Can chemotherapy cure metastatic liver cancer?
:-)
From all the metastatic liver cancer stories we gather, few of them are told by a cancer survivor.
Some that passed away did get chemotherapy, but this cancer treatment was only to:
- reduce pain (in case it can temporarily reduce or slow down the growth of a cancer)
- prolong life.
But we get puzzled when reading Kistan2’s comment on Avastin for metastatic liver cancer where she says :
they tried another infusion of Avastin but
we all knew that this next infusion of Avastin
wouldn’t do anything to help my husband
What worries me is where Kistan2 says : we all knew that this next infusion of Avastin wouldn’t do anything.
3 worried questions come in mind…
- when you know Avastin is not going to help, then why is it still given?
- are you sure "all" knew?
Father had clearly asked if there was any chemotherapy that could cure him, and the answer given to father was a clear NO.
Having that knowledge, it’s no point in discussing 5FU, Avastin, Nexavar or what we thought was quite a cute medicine: Xeloda (being a pill that supposedly only starts working when it finds a cancer cell…, don’t be fooled: it’s chemotherapy taken orally…).
- do you tell the patient he or she is dying?
When people don’t know the cancer will kill them, then these people still have hope and courage to try anything.
In father’s case:
if he was told there was hope for a cure,
he would have taken a severe chemotherapy cocktail, no matter what.Severe, as he had secondary liver cancer with unknown primary. In proper English: nobody knew where his cancer originated from, so in order for a chemotherapy to be effective, they needed to fight "all cancers possible".
Always ask your oncologist what can be expected and
how sure he is relying on his experience.
In simple words: in my experience I have a few friends that survived breast cancer after being treated with radiation, mastectomy and chemotherapy. So when I hear ‘breast cancer’ I have hope (knowing very well that treating breast cancer is a much more difficult and much longer road than surviving dengue fever or treating a cold).
When it comes to metastatic liver cancer, my experience so far is: not having encountered any secondary liver cancer survivor. If you have, please ask him or her to share with us his cancer story!
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Hi
Ive just lost my partner Jackie 43yrs old to Cancer Metastic Liver Dease with an unknown primary, Jackie had symtoms for only four and a half weeks before peacefully passing away at home.
Jackie never smoked or drank and had a active lifestyle looking after two Children 10 and 5 yrs old.
My self and my children are devistated.
Paul
[...] Can chemotherapy cure metastatic liver cancer? [...]
@Paul
All our hugs and prayers to you and your family. The road is long and hard.
We explained in Jackie 43 years old passed away to metastatic liver cancer why Trish of 43 is a metastatic liver cancer survivor but Jackie is not.
Please leave your support or hugs for Paul and his 2 children.
Hi
I send all of my love and support for those who have been affected by liver cancer either directly or indirectly. My father passed away almost 4 months ago at the age of 55 from this disease. I miss my dad every day that passes. So this is my prayer, I pray that one day liver cancer will be able to be treated and the statistics of those who survive this disease rise. God Bless You All!
HI ya I m so sorry to hear of Jackies Passing away I ve been diagnosed with breast cancer early stage and know i will survive and it hurts me to see people suffer from lost ones Im 41 and diagnosed when 39 never thought i d see this day but am pessimistic and think it will kill me eventually so hope your donig ok hun
[...] Can chemotherapy cure metastatic liver cancer? [...]
@Chrissy
Thanks for sharing, we still have the "4 months" feeling after now 18 months.
More thoughts about your comment at Chrissy’s metastatic liver cancer story
My hug and prayer to you and your family.
I cant begin to explain the hurt and the pain this cancer is causing my life.. Ive just turned 22 and my fathers lying in a hospice awaiting his fate. Me and my father were never close and when I went back to New Zealand in September 2007 (my dads from Norway) I got a letter in the mail in December. It was from him saying hes now found out hes got liver mets.
I remember my whole body just froze and I felt the pressure build up behind my eyes.. the only think I could do was go back. I came back in April 2008 and he didn’t look good at all, and it was only then I realized what a responsibility I had in front of me.
My family here suck to put it lightly and couldnt care less about him. So Ive had to face this war with him alone. There has been a lot of ups and downs and only now has the cancers true colors begun to show itself..
It started with him just not wanting food at all anymore not that he was eating much before that and I just knew I had to call the hospice. His liver has now enlarged in only a matter of three days and his spleen has enlarged to, I broke down in tears when I saw this as i realized this is the next level.. A level im having a very hard time accepting.
It doesn’t make it easier when the family that actually do care are down in New Zealand.. its hard not having anybody here. Im terrified to go see him as im scared as to how much more he will have progressed.. he cant walk anymore or do anything himself and hes just gotten so weak..
I’m just having trouble with the fact that hes never coming home again.. I feel like I’m mourning his death everyday as the pain of it all is so strong.
My birthday wish this year was that I hope he doesn’t suffer a lot of pain when he leaves me behind.. its such a shame we never had that father – son relationship.. and now it will never happen..
I’m scared of when the next bomb will go off.. because no matter what i do.. i just cant prepare myself for this..
[...] Can chemotherapy cure metastatic liver cancer? [...]
@Patrick
All our hugs and prayers.
Get some inspiration in our cancer story at One caregiver is never enough! Patrick’s father has metastatic liver cancer.
Keep us updated with anything you want to share: if writing things down helps you get the burden a bit of your shoulder, please go ahead.
Try to get more family members to help you: any help is better than none. For those who want to help: don’t go and visit like you would visit your brother, sister or neighbour.
A care giver needs:
@Anne
Thanks for sharing and sorry for the late reply. We answered your comment at :
Breast cancer survivor stories – please contact Anne
We request all breast cancer survivors and care givers to share their stories at the sites below, so people like Anne who have to start their breast cancer journey, don’t have to walk it all alone!
Share your breast cancer stories at:
[...] Can chemotherapy cure metastatic liver cancer? [...]
Patrick,
I know how you feel. You just explained my feelings too.
One Tuesday just over five weeks ago I awoke to the start of the worst part of the rest of my life. The day before I had taken my 26 year old son to the doctor with the results of a CT scan which showed colorectal cancer with very serious metatastic liver and some lung cancer and was told that the outcome would be poor.
This came as a complete shock as he is not a drinker, smoker or drug taker. Just a normal laid back down to earth guy.
Later he had to have an emergency operation to relieve the pressure in his bowel which was originally diagnosed as constipation.
Subsequently he has undergone two lots or intravenous chemo and is udergoing the second round of oral chemo.
He is also complimenting these drugs with alternative therapies administered by his aunt an oncology nurse with an Msc. in cancer nursing who also nursed her own way back from breast cancer with these therapies and chemo and is now completely free of cancer.
My son is in good spirits eating well (more than he has done for ages) and gaining weight. He has no repsonsibility to anybody but to just get well and is off work from his normal job in IT.
On his last visit to the oncologist his liver levels were down by 50% which is good.
I will keep you posted on his progress; the main thing I think is to stay positive and stress free.
Wish us well.
Jim
I am sorry to hear your story. It sounds a lot like the road I am on. My mom and my best friend was just diagnosed with breast cancer metastis to the liver and bone – Advanced Stage IV. We celebrated when we thought she beat Breast Cancer in 2006. They did a bone scan and ct scan in 06 that said – 4 foci consistant with mestatis in the bone. Then they did a Petscan and ruled it out. We celebrated!! Then just 2 months ago she started getting sick alot. We thought it was because of the pain meds she was taking for the pain in her back. Then she would not eat and she lost 24 pounds in 2 months. I began playing doctor back in 06 and started a medical library on her. I was with her in every single test – seriously – I was in the room for xrays and ultrasounds and in the prep room of every surgery. I thought I was on top of all her medical issues. In reviewing her records, I brought it to the docs attention that she had diabetes. We were just about to treat her leg blockage when we got hit with this diagnosis. How could i have missed this!??! This cancer has been growing in there for 2 1/2 years and we were worried about diabetes and blocks. Anyway, today she can eat and can’t stop throwing up. She can’t even take any meds for the pain or nausea – that comes right up. She is dehydrated and gets fluids every other day at radiation (which is done M-F – Chemo on Tue). The docs don’t want to say she is dying but IS SHE? What is the path of this brutal disease? Am I on borrowed time? I haven’t left her side in the last 2 weeks except to take care of my kids and husband at home and to work. I don’t want to miss a minute of her – even if it’s holding her barf bucket and wiping her face. My Dad and Mom both are holding onto hope that she will get better soon. I can’t be that optimistic. I saw the cancer in her lung on the screen and the bone cancer all over her body (including her fasical bones). Can someone tell me what stage of this nasty disease we are at? Days, Weeks, Months….. Should I take a leave from my job? Are we at the end? I want to be with her when God takes her. I need to be with her holding her hand when she leaves. Please give me any info and insight you have. I have accepted Gods will but I need the peace of being with her. Please give me an idea where we are so I don’t miss that.
Janet
my father 86 he has copd with lunger, lymph nodes and liver cancer he can do no treatments i pray everyday we have 1 more christmas with him part of me is dieing everyday with him i cant imagine living on this earth without him the hard part is not knowing when i tell him goodnight i love you and kiss him and say i’ll see you in the morning knowing 1 on these mornings i wont see him he deserves a wonderful funeral he was a POW in wwII hes a great and wonderfu manl but i dont even have enough money for a card board box to put him in i am so sorry for all of you that has been and who is going thru this god bless you and all of your families
@Janet
Insist the doctors and specialist to give you a diagnosis (no need to bring your mother along, that if needed can always done in another appointment).
Ask for a second opinion in a center specialised with the diagnosis set by the first doctors and or specialists.
We featured your story at Dying from liver failure where we also talk more about end stage symptoms.
@everybody
Give Nicole a hug:
her father has stage iv lung cancer
I have read many stories posted on this blog as I was trying to find some answers to my best friends horrible diagnosis. My best friend of nineteen years was recently diagnosed with stage 4 colon cancer which has already spread to her liver. She is only 32 years old. While I try to keep a positive attitute, I too am starting to mourn her death before she is even gone. Im scared for her. I dont want to see her suffer. She has three young children, one of which is a newborn. The doctors are going to start chemo on her and hopefully shrink the tumors before operating. Im hoping that she is young enough that there is some chance of survival. I know the odds are against her. I dont know how to comfort her, and I also dont know how to fight the tears from my eyes everytime I get on the phone with her and she tells me she cant eat, she’s constantly throwing up, shes weak, and simply tired of living. I keep telling her to fight we have to have faith. I cant bring myself to tell her Im scared shes going to die. The doctors told her she may have 2 to 8 years to live if she responds to chemo. I love her so much, we grew up together and shes a sister to me more than anything. I also lost a good friend of mine to stomach cancer 5 years ago. She died at age 34. I feel like history is repeating itself. I dont know how to Im going to cope watching her go thru chemo, possibly lose her hair and weight, and just overall suffer. Can anybody give me any advice?
@Shiana
Dear Shiana,
We shared our thoughts and answered your questions at:
Death of Patrick Swayze : never start mourning a person who is still alive.
In the case of Patrick Swayze: it’s almost one year that he outlived his cancer diagnosis, so that’s one year his family and friends have been able to enjoy lots and lots of good moments with Patrick Swayze.
[...] Shiana left the following comment at Can chemotherapy cure metastatic liver cancer. [...]
[...] Jim left this comment more than a month ago at can-chemotherapy-cure-metastatic-liver-cancer. [...]
@Jim
We still wish you and your family well Jim!
Since a month has passed between your comment and now,
we featured your metastatic liver cancer survival story at :
Colon cancer spread to liver
We would love to read an update and asked you some extra questions at :
Colon cancer spread to liver
I would like to post an update on my son. He is taking Xeloda and Oxaliplatin intravenous. He was recently told that the tumour in the bowel had shrunk from 1.4 to 1.1cm and the liver cancers were receeding. The oncologitsts were extremely surprised (they actually said the improvements were significant) and have now decided to give him a second round of chemo. He was origianally told that if the first round of chemo made no improvement that would be it. He is on the second round now and after these three he will be going onto Xeloda orally for a time (we don’t know how long).
The other thing is that the oncology dept and hospital have been marvelous and very caring.
Conclusion from report of last scan:
“Internal improvement post chemotherapy in the form of decrease in the size of lung lesions as well as liver metastasis and primary site at sigmoid colon”.
He is still gaining weight and eating well and has no sickness whatsoever and no hair loss; he even looks healthier now than he did prior to diagnosis- albeit he gets tired sometimes. He is also staying positive and we are looking after him so he can get well. His aunt also treats him with relaxation procedures three times a week.
I have to admit that I think the complimentary treatment is helping with the chemo. I don’t know but something seems to be working.
I will keep you posted.
I have so much faith that this is going to work.
Jim
@Jim
We still wish you and your family well Jim!
Thanks for the update that we featured
with some extra questions for you and all chemotherapy users at:
Jim’s son successful secondary liver cancer treatment
Looking forward for your update next month or anytime you feel like dropping by.
Thanks Jim!
I wrote about 1-2 months ago about my father he had lung cancer that had mets to the liver and was in stage 4. my father passed on 12-14-08. it was so quick and the pain i feel is so bad. keep everyone close to all of you and enjoy all time you have with your loved ones.
@Nicole
(Nicole’s lung cancer story is featured here: Give Nicole a hug: her father has stage iv lung cancer)
Give your condolences, hugs and prayers to Nicole!
We know pain is indescribable…
You can still pass Christmas imagining your father is one of the stars in the sky.
Just like we imagined father was the sun that peeped through the clouds on the cold winter-day of his funeral.
Feel free to drop by anytime Nicole!
Hugs, prayers and all our love.
I was diagnosed with secondary liver cancer of unknown origin on August 1, 2007.
I’ve been given several chemotherapy injections over the first 6 months with no change. I was on oral Xeloda for 8.5 months, again with no change.
Other than pretty mild reactions to the chemos – the worst being fatigue! I stopped taking Xeloda in Oct. 2008. I will be given another CT scan the 1st week of Feb, 2009.
Does that make me a “survivor”? Nothing has gotten better, and nothing has gotten worse. All my blood tests are fine. I imagine you are wondering if I DO have cancer. Yes, unfortunately.
In July 2007 I had a CT scan to help diagnose a cough that wouldn’t go away. They found several tumors in my liver instead.
I had a biopsy and they determined it is adenocarcinoma in the liver but of unknown origin.
I’ve decided to be “done” with cancer. I’m just going about my life as if it wasn’t there. It’s a LOT less stressful that way. I’m going to get CT scans every three months and have all the blood tests – I’m not in denial, just figure I am living with all these tumors in my liver and I’m not going to let them get me down any longer.
Anyone else have this type of experience?
Patti
[...] Patti commented her secondary liver cancer story at Can chemotherapy cure metastatic liver cancer or do we need to explore other cancer treatment option…? [...]
@Patti
Thanks for sharing Patti and
Lots of hugs
We featured your cancer story and question for similar experiences at :
New survivor Patti’s secondary liver cancer treatment eliminating chemotherapy side effects
I’m a IIIc Ovarian Cancer patient where my cancer has spread to the liver, colon, and the lungs (quite possibly more places). I live for right now. I’m married to the man of my dreams and we got married just 2 days before my very first chemo treatment. We’re in this together and still are. I just recently got off of the drugs Avastin and Etoposide after 6+ years of living with this disease. To say I have had my share of chemo is an understatement.
Now that I have a small break from chemo, I plan to try alternative methods to rid myself of this disease including a healthy organic diet, meditation, yoga, Tai Chi, and I also utilize cannabis for extreme pain, nausea, and digestive problems. My colon hardly works so I really have to be on top of things constantly. I can’t use any narcotic or really any pain medications since they tend to block up my system. Hence the cannabis. It also makes me incredibly thirsty which in turn allows me to easily consume massive amounts of water and of course the prune juice. Oh yum!
I do have an internist who over sees my many digestive problems and I am not allowed to eat raw vegetables because its too complicated for me to digest. I do eat lots of protein shakes, take vitamins, and utilize wheat grass. Yes, I wish to stay around for many, many more years.
I was provided antidepressants which I took for a few years until my cancer had returned after 3 and half years of which I decided to get my dream dog. I had always dreamed of getting a Shetland Sheepdog my entire life and since life can be short; why not? She’s a beautiful Blue Merle Sheltie named Blue Belle. She really does make a serious difference in my mood and I can’t think of anything that can make me smile (oh my husband too!) like she can. We’ve trained her very good and she is a Canine Good Citizen and my service dog. I get anxiety attacks sometimes and she is very able to calm me from them. What can I say, cancer sucks but she, my husband, my friends, my family all make living with it so much better. I hope we can find a cure soon!
@CJ
Thanks for sharing, we will feature your complete story in the beginning of next month and already a little at Jan 26th!
Hugs!!!
Just a very quick update on my son. Yesterday 22/01/09 he received the results of the latest CT scan. There has been a verry very remarkable decreased in the liver metastasis, probably more than 65 % from the last scan. The oncologoist was elated and said that the decrease was extraordiary in the short time and they have now decided to stop the oxaliplatin and put him one Xeloda for the next couple of weeks to give him body a rest. The lung lesions are stable and the colon tumour is too. They want to rid the liver of the cancer first then look at an operation to remove the colon tumour when he is strong enought to take the operation.
Things are looking good. And I am sure the alternative therapy is a major aid to his recovery.
I will keep you posted and give you a list later of the alternative medicines.
Best wishes,
Jim
[...] Because cancer is best explained by the people that have experienced it up close. [...]
[...] Share your experience about about this utterly devastating cancer so we can come together to: [...]
Many many thanks Jim for your update.
We featured your son’s improvement at Successful colon cancer treatment.
We wish you and your family well!
Looking forward to read your son’s list of alternative treatments.
My Heart goes out to all you folks as I know the struggle well. Jenny is now in her 12th year of a cancer battle and was sent home to die now almost a tear ago. When they sent her home they said it would only be a few weeks. but jenny sews from her chair every day. Breast cancer was found in 1996. Chemo, radiation, mastectomy and reconstruction followed , none of which were neither fun OR successful. jenny, My wife of 41 years cant walk or stand as tumors have destroyed her back, hips, legs and neck. All of this while in an ongoing regimen of many different poisons purposed to “help her”. At home , on hospice now, but refusing to give in or give up. She was to be “Gone”months ago.
Ive said all that to give you hope. I started a blog to help and encourage all of you who struggle. There is so very much you can do to battle these cancers , And none of it comes from your Doctor. You have the tools to change your prognosis. I would invite you to scan the articles i’ve writtin as we have learned new and important facts on our Cancer journey. to many to post here. but if you begin today to care for the body God gave you, you’ll be amazed at the results.
Begin to drink fresh organic juice every day, at least twice, drink good clean water and avoid sugar as it shuts down your immune system. Stop eating processed foods And eat as much raw veggies as you can. Jenny can be so very sick that just the smell of food does her in, but every time this happens i cut up a couple fresh tomatos and cucumbers and she eats it all. Things designed by God seem to work,,,hmmmm?
Avoid putting shampoo’s mousses, hand creams etc on your skin, they contain alcohol, bleach and formeldehyde, all known poisons that soak in your pours and tax your immune system.
hair sprays window cleaners , detergents also are toxic and hurt you, especially if your already battling cancer or some other disease.
these are just a few of the things that are hurting you right now, and every one can be replaced by somthing more tolerable.
Microwave’s leach plastic toxins on foods heated. Aluminum pans also leach chemicals. the list is long
But dont give up hope, there are many tools for you to use and you have an amazing body created by an Awesome Creator more than able to sustain your life.
Jenny’s battle is ongoing because we have addressed these issues. Gods very best to you all. If I can help , even in a small way, please visit, or E-mail http://www.cancer-isnt-scary.blogspot.com
thnx SSNUFFY aka Allen
[...] Commented by her husband at : Can chemotherapy cure metastatic liver cancer? [...]
21/02/2009
Update of my son. He was hopitlaised four days prior to Christmas for an infection and again two three weeks ago. On the last hospitlisation they found nothing, no infection or any thing else but he had a very watery dishcage from the stoma as the bowel lining was not absobing properly because of the chemo, that has now stabalised: but whilst in hospital they decided that his condition had improved and that the bowel cancer was breaking up and upon resluts of a CTI scan (already done) and a PET scan in March they think they maybe able to remove the bowel tumour and some the the liver mets as they are about 75% reduced on last scan could even be more by now. The anitbotics made him tired but not enough to stop him swimming twice weekly in his aunts indoor swimming pool, which gave him great relaxation.
His condition is stable and his attitude positive; he is also contiuning on with the alternative treatments especially the immune system booster and mushroom extracts.
He has some pain in the stomach but this only to be expected as the bowel is reforming after chemo (which he has stopped now for three weeks, as four weeks is esential for good PET scan results. When the pain is bad he takes Endone, but only when it is really bad and that is not that often.
He is staying positive and talking about when he will be able to get back to his IT job as being at home is a bit boring. He makes very complicated models imported from Japan for therapy and to keep himself occupied.
I will update after the PET scan to let you know what is happens.
Best wishes,
Jim
Just a quick addition to my previous post. My son came back today from seeing the oncologist and his cancer count is down from 2100 to 35 (Yes that is correct 2100 to 35)
Jim
[...] Commented at Can chemotherapy cure metastatic liver cancer? [...]
Hi, I wanted to share with you all a post I wrote on my Cancer Blog for Caring.com about new treatments for liver cancer. Here’s the link:http://www.caring.com/blogs/caring-currents/new-hope-for-liver-cancer
I hope this information is helpful, and would appreciate it if you’d send cancer patients to our site as well if they need more information. Also, I was invited to be a guest blogger here and would love to do so!
Thanks for the invitation!
Melanie Haiken, Senior Editor, Caring.com
Thanks Melanie!
We featured your website caring.com at:
Melanie Haiken helps you to help your parents at caring.com
Hugs and looking forward to work together.
Hello to everyone, it has only been 4 months since my father passed. Seems like forever. I still come on the site to read other stories and just feel the support I get from others stories. Dont ever give up. I know It’s hard. Stay positive. Enjoy every second that you have with your loved one. I pray for you all.
Thanks for dropping by and thanks for your prayers Nicole.
We featured your comment at:
Prayers for cancer patients
Hugs back to you and your family!
[...] Nicole left the comment below at can chemotherapy cure cancer? [...]
[...] thank Jim for his continuous updates about his son, who was diagnosed with secondary liver cancer September 2008, spread from the colon both to the liver and the [...]
hello everyone, my mother passed away january 12th of 09 with liver cancer the doctors said it probley came frome the pancreas she was sick for 2 years before with pancreatis attacks and a ruptured appendix she also had copd and was a smoker it was a struggle she was in the hospital more then out with phonomonia. She always complained of alot of pain and i couldn’t understand why the med the doc gave her never helped she always wanted more pain medicine. I honestly, thought maybe she was just addicted but, as the holidays neared and she kept getting sick and couldn’t get better i realized it was more then just COPD. I kept asking about cancer and the doctors never would say the c word she was constantly on antibotics and then iv antibotics but it wasn’t helping the pain was also alot worse she was going to a pain clinic and instead of uping her pain medicine they decreased it because it did’t show up in her urine and come to find out it was because of the cancer in her liver it did’t show.We had a really rough christmas I was trying to get her pain to ease with what little med the pain clinic gave her.3 days after christmas i took her to the hospital i told her they would give her something stronger. That was actully the last time i really got to see my mother at herself because that was when they did a liver biopsy and said it was mastastic liver cancer and that she may live another month she came home the next day with hospice we never told her she had cancer i never got a chance she slipped into a coma the day she come home and passed away 2 days later. Its been almost a year and im still having a very hard time understanding how this come about so fast without the doctors knowing i hate her not ever knowing why she was so sick and hurting the way she did some doctors think people just want the pain medicine they need to realize if someone is sick for 2 years straight SOMETHING is going on. No one should suffer with this cancer I know know she did.
Dear Angela,
Our hugs and condolences, thanks for sharing.
What we learn from your story is that if you have pain that doesn’t go away after one week, then don’t stop knocink on doctors doors until they find out what is causing the pain.
Pain is just telling you that something is wrong with your body. Painkillers take away the pain, but don’t cure. Worse: since you are no more in pain, you “forget to” make an effort to look for the cause.
On the other hand: when you know what the cause of your pain is and how to solve it, it makes perfect sence that you take a painkiller if that makes you feel better. Yet painkillers do have side-effects, hence Patrick Swayze opted not to take them to be able to work in his last months suffering with his spread pancreatic cancer.
So for all reading this: if you are in pain, do make an effort to find the cause of your pain!
Thanks Angela, all our hugs and prayers for you and your family.
My sister-in-law was diagnosed with breast cancer 5 years ago. The Drs. said she was cancer free at least we thought a few years back and then it came back or was still there. She has fought this battle for a long time now and I just need someone to talk to. The cancer has mastisized to other parts of her body and now is in her liver. They say there is nothing else she can do just to live her life to the fullest. She now has jaundice and is very weak. I want to know what we can do that maybe we aren’t already doing to help her. I dont know if there is much but any suggestions would be appreciated. We know that Drs. put a time limit on people’s life but I just think that God is the one who decides that.I dont really want to know how long she has but has anyone dealt with this type before? Thank you for your time and please write back.
Dear Karen
We have been in a similar situation. When doctors say "there is nothing else your sister in law can do just to live her life to the fullest.": they actually say: "with normal efforts and with our limited experience
we won’t be able to cure the disease".
If you would have a doctor in front of you that has a cancer survivor patient with a similar cancer as your husband, he would say: "we can cure this disease although the statistics are against you."
What our cancer survivors say is: you need to 100% believe you can cure the cancer and then you need to do everything right. If you have that mindset and energy, then read on at Jim’s son’s victory over metastatic liver cancer and step to an oncologist who believes as well and do everything right.
If you don’t believe there is a cure, what we happened to believe when our father was diagnosed with secondary liver cancer, you need to contact hospice asap and organize your life knowing that tomorrow will be more difficult than
today. Make sure you get all your friends and family members ready to help when more help is needed. They better start helping today, so your sister in law gets used to see their faces, as when the liver begins to fail more, recognizing people could become more difficult.
"Live life to the fullest" is a typical doctor’s statement. Most people just want to carry on with daily life and do the things they enjoyed doing, eat the things they enjoyed eating and see the people they enjoyed seeing.
Our father never showed any jaundice symptoms, although his last weeks were badly effected by failing liver functions.
Hugs and please ask more questions or just speak and we will listen.
My Grandfather passed away on December 1st 2009. He first was diagnosed with pancreatic cancer of December of 2008 which he then had surgery in January. Everything looked great after words but then in June of 2008 he started feeling pain in his back which spread to his belly; we took him to the doctor they did ct scans, ultrasounds and other tests they finally told us that the cancer spread to his liver. Well our real journey began after that. He began recieving chemo once a week after that but it was really rough he experienced a lot of nausea, vomiting,and weakness but he always had faith and hope. In October he ended up in the Emergency Dept. where we got the devestating news that the tumor regrew even more and he only had about “6 months” left. We grew as a family closer together but what her us was his ups and downs that he had. November was the toughest he didnt really eat anymore he couln’t get up and he would seem confused sometimes thats when the hospice nurse told us he was close to the end. Thats when we made a difficult decision we had to make his last wish come true which was to take him back to Mexico to see his two oldest sons and to be back at the house he called “home”. My mom flew with him on Nov.22,2009 with my uncle but if you could have seen him he was so happy. He had THE BIGGEST SMILE on his face and I still remember him waving bye to me with that glow in his face. We all prayed just so he could get there well b/c the doctors didn’t want him to fly but it’s a decision he took too. Thankfully, he got there safe and was well for about 3 days after that I was told his disease really progressed. Sadly he passed away on Dec.1st I understand what people are going through because I went through it. I miss him so much but atleast he is not suffering anymore. But you always have to have faith and be strong for your loved one It’s not easy but I really appreciated each day I got to spend with him. May my prayers be with those who need them because I know what they’re going through.
Thank you so much for writing me back. The whole family has been helping out with alot of things. Her husband has to work so my mother-in-law has been staying with her during the day and I as well get over there mostly everyday. She has 3 brothers and one is my husband, they go everyday after work to see her. We are doing everything we know to do. Hospice was brought in about 2 weeks ago and they come about twice a week and check on her. They told us that we are doing everything right for her and they said they admired us for talking about the possibility that she may not be here much longer and that she also talks about it and excepts it because most people dont.
I just wish there was something we could do to help take away her pain and to heal her. We do believe that God will heal her whether that be here on earth or in Heaven. It’s just so hard to imagine life without her because we are a very close family and everything we do we do together. Our kids are so close, which is good for her youngest daughter who is 14, the same age as my youngest daughter. They have always been together mostly everyday and now they are really clinging to each other. I am sorry to go on and on, just sometimes I need to talk about it.
I am trying to stay strong for my husband who is the oldest and he feels like he should take care of all of his younger siblings and trys to hold it all in, well now it’s finally breaking him down and he is so sad, as you can only imaging.
I really appreciate you letting me talk about this and it really does help to have someone outside of the family to talk to about the way I feel.
God Bless and have a great day.
Hi Karen,
Feel free to drop by anytime, also on moments of anger or, well, anytime!
Which pain are you talking about? Painmedication is a “must” unless people choose to live and work it like Patrick Swayze.
Hugs and God Bless
Hi Sayda,
God bless and hugs.
Great to hear that you were able to give your grandfather the biggest smile and let him change universe at the place he calls home.
Feel welcome to drop by anytime and share your story with others who will walk the same path as you did.
Thank you all for your comments. God took my sister-in-law home with him on Monday December 14th. It has been a rough week for all of us but we know that she is with God now in Heaven and she will no longer have to suffer from this crazy, no cure cancer.
Thanks again and God Bless.
RIP Brenda, I Love You!
My mom has stage 4 small cell carcinoma that has metastised to her liver. they gave her 3-6 months in oct 09 because of it rapidly spreading. she is now starting to get sick after meals and i am so scared this is a sign that she is failing. does anyone know what to look for? i am scared.
Hugs and condolences Brenda.
I don’t agree when you call it a crazy, no cure cancer.
I do agree that doctors are crazy to believe they can find one magic pill to cure cancer and keep on wasting billions in not finding the magic cure. That just sound like Medieval times where people believed they could make gold out of lead.
All our metastatic cancer survivors on our site show that with a change in lifestyle and a believe to cure the cancer, there is living prove that cancer can be beaten with an holistic approach: we need to do everything right and stop looking for the magic pill!
Again: hugs and condolences, there is no pain in heaven.
Hi Tracy,
Please elaborate “does anyone know what to look for?”
When doctors give up on a cancer patient and you believe them, then the cancer patient becomes like a snowman in the sun: every day there will be less snowman than the day before. If you have a cold winter, the snowman will last longer, but it won’t last forever and it will become less recognizable day after day.
Please ask your questions as most of us walked the same path as you with the same questions and same fear.
Hugs!
2010 Metastatic Liver Cancer Invitation
To keep your spirits high in 2010, we ask you to leave a comment anywhere at http://www.metastaticlivercancer.org to inspire others that are going the same path.
Sharing is caring!
Update on Jim’s son 16th January 2010.
My son has gone through some tumultous times in the past few months. In December he was hospitalised for fluid on the lungs with a poor prognosis; but he pulled through with the help of the ED and oncologly unit. At the time we were asked if we wanted him rescucitated if anything went wrong when removing the fluid on the lungs!!!! BUT he came home albeit very weak and tired. Then a few days later at home his stoma bled so much while he was cleaning it we had to call an ambulance to take him to ED, which resulted in an infection. Again, he pulled through afer spending three days and Christmas morning in hospital; he was allowed home for Christmas day and then had to return on Boxing Day morning, he was then allowed home on antibotics. He was then called back to the oncolocy unit as they found another bug in his blood. At this time we thought we were going to loose him; BUT again he pulled through and is now home.
On Thursday we got the good news that he was going to be given Erbitux as he was a candidate because the other chemo treatments were not working.
Yesterday he had the first infusion of this $40,000 progamme (paid for by the Australian government PBS for which I am so grateful). When he came home for the oncology unit yesterday I thought we might loose him as he was so sick.
This morning he was also very tired and confused and not even able to walk the stairs on his own; BUT this evening he in on his computer in the lounge having eaten the biggest meal in ages (Two small racks of Texan ribs, mashed potato and a full corn cob), and he is feeling pretty good,considering.
He has just gone to the fridge on his own and taken an ice block to eat.
I don’t know whether it is the Erbitux or the fact that he feels that he has been given another chance at medication that may cure him, or at least prolong his life.
I thank Austalian Government PBS scheme for at least giving him another chance.
Love and prayers to all people who are suffering with their loved ones or themselves.
Jim
Hi everyone,
I hope to be able to leave some of you with some HOPE – I was diagnosed in April of 2006 at the age of 30 with Stage IV metastatic breast cancer with liver metastasis. At the time I had 20 tumors covering the liver and had lost 50 pounds and felt awful. The doctors did not give me much hope. They started me on Taxol, Carboplatinum, Herceptin, along with Femara and a Lupron shot to put into early menopause. I did the above for 6 months with amazing results. For the past 3.5 years I have just been taking the Herceptin, Femara and Lupron. I also use olive oil daily as it is said to help HER2+ breast cancer patients and I drink pomegranate juice as it also says it is good for breast cancer. I seriously expanded the amount of veggies I eat – such as broccoli and brussel sprouts and we started growing our own vegetable garden. I also have prayed for healing and have many others praying. So far I am hanging in – it will be 4 years since diagnosis this April. I realize I am very lucky – but hey if it’s possible for me it just might be possible for you to!! Keep on keeping on!!
Kelly
Hello all. I am new to this type of stuff, but I read all your post and I still feel very scared for my friend who was recently diagnoised with stage IV metastatic liver cancer. I believe and pray that she will be the next survivor of this horrific disease. My heartaches when I think about what her and her family may be experiencing. I am truly sympathic to all your your lost. The hospital removed the cancer in her colon (primary site), but says there is nothing they can do about the liver. When she gets better from the surgery they will start chemo. All the odds that I read is that she will not survive and that is not what I want to hear or feel the pain of her parting this life leaving behind a beautiful daughter who is 12 and her husband, and many other family members and friends. This has happened so quickly, I do not know how to wrap my thoughts around it.
Dear Tina,
When the primary cancer is completely removed, part of the battle is won. You need to ask the doctors why they say they cannot help your friend and why they are doing the chemo (cure or palliative)?
Here I would advice “to do everything right”: live a healthy life, believe in being able to kill the cancer, reduce stress and boost the immune system.
However: start asking the doctors (or ask your GP to ask)
-what do they mean with: “there is nothing they can do about the liver”: did they mean “we can’t operate on it”?
-why is the chemo for?
Hugs and keep us posted!
My dad was diagnosed with prostate cancer in November,he spent a lot of time in hospital. He had blood in his urine,gone off his food and lost weight,his stomach had swollen. New years eve they told him that the cancer had spread to his bones, he became really poorly and spent some days in icu, he then perked back up it felt as though the cancer had been playing games with us. He would be confused and then ok again. On the 19th of January Dad had been diagnosed with cancer of the liver, he sadly passed away on the 21st. It was so quick in the end, i knew it was coming but did`nt expect it to be so quick. He was semi concious and half an hour before he died was smiling at some light banter. The death certificate read Metastic Neuroendocrine Tumor and Prostate cancer..
Dear Julie,
Thanks for sharing!
Our deepest condolences to you and your family.
Palliative cancer doesn’t play tricks: it’s a path down hill with some days a little better than the previous one, but overall a downhill battle
Our father was also rushed to hospital 2 months after his diagnosis, and left the hospital again a few days later: it was “a big fall downwards but he managed to stand up again”… to walk further downwards
Always remember that your father had a smile on his face when he passed away
Hugs and prayers for you and your family!
My dad may possibly have metastatic liver cancer from diagnosed bladder cancer. His pet results have also shown swollen lymph nodes and he is scheduled for a biopsy next week. The last couple of days, he’s been screaming with intense pain coming from the liver. I’ve e-mailed his oncologist and wondered in the mean time if they can do a biopsy of the liver at the same time.
Also, I have come across on the internet a potent soybean product bottled under the name of Haelan 951, originally discovered by the Chinese. There is plenty of information on this product if you look it up, including case studies (if they-re true), research and clinical trials. It is very expensive but most important, is I wonder what the drug interactions with these natural therapies would be and who would verify this. It scares me that I cause further harm, even though I’m so desperate I would try anything at this point. Has anyone come across this product? I went through the trouble of downloading all of the information for my dad’s oncologist but he was not receptive to reading it as he claimed he was too busy. Clearly medical doctors, unfortunately have not make the bridge with natural therapies, as they still are not treating the whole person and not just the disease. I wish the billions spent on finding a cure for cancer research would be spent on education on therapies that would strenghten individuals’ immune system, as I strongly believe therein lies the answer. I would love to hear from all of you that can guide me with my dad. I love him dearly, as do his grandchildren, and he’s not ready, nor are we, to let him go. Pleae help!
Carol
Hi Carol,
I strongly believe like you that the immune system is the best qualified to treat cancer.
I also agree that the billions spent on cancer research is like looking in 1 corner and ignoring the 3 others
I also believe that you have to “do everything right” in order to boost your immune system and your overall health, and not look for “the one miracle alternative cure”. I believe you should only eat organic food, yet Jim’s son – metastatic liver cancer survivor – says that variety is the key of a healthy diet.
Some doctors are open for your input, others are not. Go to the doctors that want to hear your story and be aggressive in finding one, as life is priceless (hospitals unfortunately think different as they have bills to pay
).
As far as I know, a liver doesn’t feel pain. Yet if your father has pain where his liver is, surely that should be addressed in a proper way that tells you the cause of the pain and a solution to take the pain away (painkillers are no solution).
Biopsy will tell if and where the cancer has spread, as far as I remember from my father, after his liver biopsy, he felt pain where the biopsy was taken.
Please keep us updated and find a doctor that will listen to you. In our case we went to father’s GP who picked up his phone and called the specialists: some specialists are much easier reachable through your GP than going there yourself.
Hugs and keep us posted!
Update on Jim’s son 09/04/2010.
He has just celebrated his 28th birthday (Feb) and we didn’t expect him to make 27.
My son is doing well, his bloods are good and he is looking good even though he is still sick. He is to have two other chemo drugs as well as the Erbitux (#12 of 16 today);not sure what they are but he has to have a valve inserted in his chest for one of them which he starts next week. I will keep you posted.
He is now 18 months into a three month prognosis. He eats well (four meals a day) and has lots of protein which is a must.
The key to the success is to boost the immune system as soon as you start to take the chemo, which is why I think he has lasted this long, all thanks to his aunt.
Please find someone who is genuine and not a ’shonk’ just wanting to take your money. Make sure they understand cancer and the body in general.
That’s all for the moment.
Best wishes to you all.
Keep strong and don’t give up.
Jim
Please read Jim’s son’s update in the next comment!
Best wishes and many happy returns
2004 i was diagnosed with non hodgkins lymphoma 4b…it then metastasized to the bone marrow and now as of 11/09 i have liver cancer nhl…its of a folicular cell which is incurable sometimes treatable..after two years of chop chemo every three weeks and here i am again…im opting at this point for a dnr and no life sustaining treatment of any kind…i just cant do it anymore…and now they say they have to treat the original cancer which is the nhl and then treat the liver depending on how that came out…im sorry i cant do it…im 58 but im tired of suffering all of my life!
Dear Kathe,
It is true: in order to have any success treating the secondary cancer in the liver, doctors need to treat the primary cancer first.
Statistics are against us, yet the few cancer survivors on this site are an example that statistics are no match for the human spirit.
We thank you for sharing your story and invite you to share more.
Hugs!
Update on Jim’s son.
My son is ok! He was stared on DBL Fluorouracil Injection BP this last weekend. This is administered via a Power Port inserted into his chest. The chemo works in conjunction with the Erbitux which is still being administered, the chemo takes two days to be injected and he has to carry around a special injection pump for 48 hours and then when finished he returns to the hospital to have it removed. This last weekend was the first one of we don’t know how many. Currently he is very tired; this always seems to be two to three days after the drugs are put into him.
He is in good spirits, though sometimes a bit grumpy-but that’s what we would expect.
I will let you know how this new combination of drugs are going.
Take care all of you. Be inspired by my boy; he has been at the ‘brink’ four times now (at Christmas only given a few days) and has bounced back, he just won’t give into it.
I have to give special thanks to the Australian health service for their fantastic treatment and drug administration, and also his aunt.
Best wishes to you all.
Jim
My last submission was dated April 8 and I wrote to you about my dad who is 77 years old with we believe(not sure!)primary bladder cancer with metastases to liver and bone. Sadly, my dad passed away on Sunday April 18, at 1:45pm, in our arms. He had a surge of energy on the Friday night where he asked us all to eat and drink with him at the hospital. We took pictures with the children and videos with the children and he had a beautiful color. Saturday, he started to change, he wasn’t as responsive to us as the night before. The Sunday of his passing, he was in a vegetative state. He had mentioned to my brother who had slept at the hospital that night that his father who had passed years ago was present and stood by his side. Later that afternoon he passed away. I’m still in shock and so is my mother and the children.(I have 3) We cannot imagine our lives without our dad who is our strenghth, our compass, out lighthouse. We are angry as all further interventions diagnostice and chemotherapies were denied. We mentioned some of the combo chemo Jim’s son was taking and they said he was not a candidate and too weak to receive any further treatment. He would have to improve in health first. We soon realized that was an unlikely possibility as his degeneration was daily and within a month he was gone. We realized the doctors were just trying to keep the hope alive but they knew better. Was the cancer to advanced? Was something missed? Should we bring the file for another opinion? We celebrated his funeral on Friday the 23rd, and we still can’t find any comfort and closure. This is not how it should have ended. My dad was not ready to leav this planet and we still needed him!
Carol
Dear Carol,
Read our complete answer at: Our deepest condolences.
kath-e….here i am in need of an answer..i have metatastic liver disease with non hodgkins lymphoma stage 4 b as my primary cancer…
anyone ever heard of BENDAMUSTINE ????
THIS IS WHAT IM BEING OFFERED ALONG WITH RITUXAN!
SEEMS LIKE CHEMO IS SUCH A GUESSING GAME HUH!
THANK YOU!
Love and prayers to everyone that has commented on this site.
I am new to this sort of communication regarding such an emotional and heart full situation.
I have my best friend that has just been diagnoised with metastasis liver cancer, primary breast cancer witch was diagnosed and treated 3 years ago. She starts chemo(Nab-paclitaxel)next week. Has anyone had this chemo, and if so what can I expect. I know this sounds naive and I have had experience with cancer before, but not liver. Everyone is so matter or fact about liver cancer and I need alittle positive or strenght to help me care for some one I love dearly.
Thankyou from the bottom of my heart.
Thanks Caroline for sharing your story. The more we share, the more we can learn as cancer is not a hard road to take that will shake your personality more than once, I am sure you know that out of your own experience.
I can’t tell you about Nab-paclitaxel but reading our survivors one should do anything to boost the immune system and overall health, which now is hammered on by the chemo and the bad news.
Love, good news, relaxation, smiles and hope are amazingly strong positive treatments and we hope you can get inspired by Jim son’s story.
For the medical aspect: do know there is a difference between liver cancer and secondary liver cancer. In your friend’s case: the focus is about treating breast cancer of which some cells have moved around and settled in the liver as well.
Lots of hugs and do drop by to share anything, anytime!
CANCER! What a frightening word that nearly knocked me to my knees 4 weeks ago. The most precious person in the world to me has it. My mother. I am her care giver and I would not change that for the anything. I am blessed to share this time with her. Blessed to sit in bed and read scripture with her each day. Blessed to hold those sweet hands that hugged me when I was little and directed me when I was older. It is hard to watch her slip away from me every day, but God has a special place for her in Heaven.
Kendal,
This quality time is a gift that your mother is giving to you and that you are cherishing every moment of it is going to be a great source of comfort to you in the future. From my own experience, my only solace was the month and a half spent with my dear dad at the hospital just talking with him, holding him, sometimes lying next to him in the hospital bed. He was so happy to spend that time with me and I with him. He passed peacefully in my arms, exactly I hoped it would be. It’s been 1 month yesterday since his passing and there isn’t a moment in the day that goes by where I don’t revist in my mind the time we spent together
We always had a very close relationship so there are no regrets. I take much comfort in that as I hope you will too.There is also anger that sets in where little was done for him as the cancer was rapid and aggressive. Yes God may have other plans for him but so did we! The ache grows with each passing day with the realization he is not coming back and that our lives have to go on without him. It’s a painful thought as he was a model dad and an exemplary grandfather. He was our lighthouse, our compass, our rock. Nothing got done without his blessing, and every bit of good news had to be shared with him first as he was our biggest fan. He was wise and had vision, and much of his efforts were spent on us, his children and grandchildren, guiding us in whatever we did in our lives. We miss him so much, including our children. He’s left a hugh void in all our hearts. We still cry for him, visit him at the cemetery weekly, talk about him all the time, and quite frankly we are till in disbelief that his hideous disease has taken from us a most significant person! We still ask why?
Carol
kath-e here again…not to hurt…only to share..and from me you will only hear the truth…from wht ive learned about having on hodgkins lymphoma stage 4b and now that has now spread to my liver!!!
ive been told metatastic liver cancer is worse than primary liver cancer bec at least primary is very treatable with good success but with myself..im not treatable…ive been given 6 months or less to live…hmmm….ive been searchin all over the world for answers…
they just cant be found!! they told me if they attempted to treat me with heavy duty chemo that ild never live long enough to cure overcome go in remission…call it what ever you want..so i had no choice but to call hospice…it was the best thing i could have done!!
HOSPICE IS NOT ABOUT DYING! ITS ABOUT LIVING AND THEY WILL DO WHATEVER IT TAKES TO KEEP YOU COMFORTABLE AND ALLOW YOU TO CONTINUE TO DO THINGS THAT WILL ENHANCE WHATEVER LIFE YOU HAVE LEFT! THANK YOU JESUS FOR HOSPICE!
IM ACCLAMATED TO THE FACT THAT MY LIVER WILL BE SHUTTING DOWN AND THEN ALL THE TOXINS WILL GO TO MY BRAIN AND I WILL LOSE MY MIND AND PROBBLY BECOME COMATOSE AND THATS IT FOLKS!!! BEC UR BRAIN IS NOT USED TO THE TOXINS BEC THE LIVER ALWAYS TOOK CARE OF THEM…AND NOW IT CANT…
SO THE BRAIN BECOMES UNABLE TO FUNCTION BEC OF THE TOXICITY…1 800 4 CANCER IS HELPFUL…
SO IS THIS WEBSITE!!!ITS THE BEST!!!
BUT IF YOUR NOT LOOKING FOR THE REAL TRUTH AND ARE IN DENIAL…THIS IS NOT THE PLACE FOR YOU…THROW UR HEART UP TO THE LORD AND PRAY FOR THE STRENGTH YOU NEED TO GET THROUGH THIS AND BE SURE TO KEEP A HEALTHY MIND BODY AND MOST OF ALL…SPIRIT!!!
FOR YOU NEWCOMERS..IM NEW TO… JUST DIAGNOSED LAST MONTH..STAGE 4B METATASTIC LIVER CANCER…PRIMARY IS NON HODGKINS LYMPHOMA (LYMPHATIC CANCER) THAT SPREAD TO THE BLOOD AND NOW THE LIVER….
ON THIS WEBSITE PLS READ BILLYS STORY AND WHAT THE DRS DONT TELL YOU !!! THAT SUMS IT UP BETTER THAN I EVER COULD BEC IM ONLY WAITING FOR THE NEXT STAGE OF THIS DEMONIC DISEASE….
GOD BLESS ALL OF YOU..PATIENTS CARETAKERS AND FRIENDS AND FAMILIES!
KATH-E HERE AGAIN….
IM SO SORRY TO HEAR ABOUT JACKIES PASSING…HER SUFFERING IS NOW OVER…THANK YOU JESUS FOR NOT LETTING HER SUFFER ANY LONGER…
PLEASE LORD GIVE THIS FAMILY THE STRENGTH HEALTH AND SPIRIT TO GET THROUGH THIS…
ON EARTH AS IT IS IN HEAVEN…JACKIE HAS ETERNAL LIFE NOW AND SHES WAITING AND PRAYING FOR THE DAY YOU WILL ALL BE TOGETHER AGAIN!
GOD BLESS YOU ALL!
Dear Kath-e,
Thanks for sharing your story.
We perfectly understand your anger, as we felt our anger once our father was diagnosed with metastatic liver cancer and doctors basically said : “your father is dying”.
Do know that Jim’s son is one of the few metastatic liver cancer survivors still contributing to this website.
We want all doctors to know that one can survive this disease, and that one should learn from the survivors.
We also want all care givers to listen to your story. Hospice is great but in our experience we could have used way more help to get through it in a comfortable way: there was too little man power to be comfortable although without the help of hospice and the nurses, we most likely wouldn’t have been able to keep father at home.
Father also passed away without jaundice and with way to much toxins in the brain
Lots of hugs Kath-e and God bless!
kendal…kth-e here and i just wanted to say that i hope sincerely that your moms suffering isnt to bad and ill pray for her and already do so…ill pray for you for strength..jesus loves you …your mom s very special and hes calling her home bec he needs her…to give her eternal life with no suffering kendel…and just think ..you will be with her one day s it alwys was…she will always be with you…pls jesus give kendel the strength to make the right decisions for her mom and to keep them both as happy and healthy and spiritually sound with your love and pls jesus spare them the most suffering you can…
community hospice in my county has been wonderful!! i love them….they have given me the strength i need to get through my prognosis which is 3-6 months bec of metatstic liver cancer from non hodgkins lymphoma..unfortunately for me chemo never worked and now its in my liver…im taking it one day at a time…praying to the lord to reign down on my with his holy spirit…
i wish i could have chemo but its not an option to prolong my life…as ive been told…
kendel pls know im here for you if you ever want to talk …however im not gonna tell you what you want to hear only what i know to be a fact…
check out billys story…what the drs dont tell you…i asked my hospice nurse about it…yes its true…
god bless you and your mom eternally!!
stacy….kath-e here with stage 4b mets from the blood…i too have been given 3-6 months..they say you have to cure the primary first…however when the primary is in the blood…then what…
as for your mom…im sorry stacy but from what ive read on the acs webite and the nci website..yes this is one of the things that happens towards the end…im going through it right now…cant ever eat cuz im always full…and when i do try to it i throw up also..my hospice nurse comes to my home twice a week…however there is nothing better than sharing with another mets patient..how better to find your answers right…1 800 4 cancer is also great…veryhelpful with their knowledge!!
they say so ive been told that as the cancer grows you will eat less and less and be more full than ever…next they say vomitting after eating is quite common along with fatigue..however they do say the worse comes when the liver cn no longer filter out the toxins in our bodies and the toxins spread to the brain…and with the brain unable to figure this out…ive been told the brain gives out…
just prepare yourself and know that you can call hospice 24/7 with any questions that may help you…
just dont be in denial about this and thats half the battle!
god bless you and your mom..lord jesus pls give this girl and her mom the strength they need to get through this!
bless all you mets patients!
My oldest brother Dick (72 years old) has metastatic liver cancer. He was diagnosed with stage 1 colon cancer in 2006 and underwent surgery but no adjuvant treatment. A year ago in July, he received this current diagnosis and was told it was incurable and has 18-22 months to live (now it would be 6-10 more months).
He’s underwent 1st line of chemo last year and is now on a 2nd line. He’s got poor appetite, lost quite a bit of weight and hair and struggles with intermittent bouts of diarrhea.
My concern is that he’s refusing to discuss his treatment or prognosis from his 2 college-aged kids from whom he kept a secret, as well as our 93-year-old mom, and his siblings. We all live in the same town and he sees everyone daily. He’s had an unfulfilled life in the public eye and is now trying to live off his monthly pensions and our mother while pretending to still be a “big shot.”
His kids do not have much of a relationship with their grandma or others in the family. I am the closest to them and try to maintain good ties. I’ve offered to accompany my brother to his oncologist appts (it’s the same doctor our other brother went to for his Stage 4 colon cancer and the same clinic my husbandf went to for his non-Hodgkin’s lymphoma treatment).
I think Dick is in denial which is understandable but he’s not taking any steps to think about or arrange for care as his disease and conditions worsen. I’ve tried to approach him about hospice, estate documents and getting support for his kids. (I helped my mom, siblings and husband prepare for their illnesses and end-of-life needs.) His children are in their early 20s (he was a late dad and is now divorced) and don’t know what to do or what to say around him. Now my brother wants to take a sentimental vacation with them around the 4th of July, driving out to Yellowstone and visiting relatives, most of whom are not aware of his terminal illness.
I take it he doesn’t want anybody’s help, maybe not until he can’t do things by himself anymore.
I also realize that he’s always been afraid of being old, lonely and sick and now that’s what’s happening to him. I was going to ask for suggestions on helping Dick but I guess, as I’m writing this, I’m answering my own question: He doesn’t want help…now. Thanks for listening!
my brother is in the hospital right now diagnosed of liver cancer. we dont know what to do since this is the first case in the family. the cancer is already stage 4 and we are very afraid. kindly send me some advice. thanks
Dear Toto,
We understand your fear.
Just like you, when we first heard father being diagnosed with “adenocarcinoma, secondary liver cancer with unknown primary”… it didn’t mean anything except that we couldn’t cure him.
That was then, meanwhile we found some metastatic liver cancer survivors on our site and we know that it is not true to say: metastatic liver cancer is not cure-able. However we know that statistics are against us and that doctors don’t want to go the extra mile because they have easier cases to attend to in a hospital where being profitable is more important than trying to save every person’s life.
What to do? Ask the doctor what’s happening: liver cancer stage 4:
-is it a cancer that moved to the liver or
-is it a liver cancer that moved somewhere else?
This site talks about cancers that originated outside the liver but moved inside the liver.
There are 2 options: cure or care:
-in cure: your brother needs to believe he can beat the cancer. Your doctors will explain him how and we advice you do everything possible to boost your brother’s immune system.
-in care: you need to organise as much manpower as possible and contact hospice to care for your brother with the knowledge that what is today, will need even more care tomorrow: it doesn’t get any easier the longer you are taking care.
I know, this is blunt information, but it is basically the 2 options you have.
Do ask more questions and share your experience, as we all went the road that’s ahead of you and walking the road together is easier than walking it alone.
Hugs and God bless!
First off I’d like to give my condolences to those who suffer from this terrifying disease and their family members who as well go through the sufferage. A few days ago my father and was given terrible news pertaining his health. His dr. found cancer in his liver.It was a blend of emotions; anger then sadness, its been a nightmare since day 1 when he was diagnosed with colon cancer, three yrs. later they found a tumor in his brain and cancer then spread to his lungs,now its his liver, due to his age and past history its been an even harder trial for him. I’m devestated because I love my father so much and its very hard for me to see him suffer. I’d be very grateful if someone would guide me and give suggestions on what I can do to prolong and give my father a ” quality of life ” with the least pain possible…anything would be appreciated..thank u…
Dear Alba Velez,
Thanks for sharing your emotions, anger and sadness.
Let me put my emotions aside, so I can write this post as good as it goes:
-anything that boosts the immune system is beneficial for everybody: both the sick and the healthy. Now don’t go overboard buying acai berries and what have not: you need to do everything right as we state in our sidebar.
-”quality of life” is what’s most important for everybody: both the sick and the healthy. If you father has wishes, then you know what you can do. If your father is like mine and doesn’t want to bother anybody with his disease, then it’s up to you to find out what quality of life is: mostly it boils down to doing the simple things of every day life with the people you love.
-help from others is needed: you need to organize as many people as possible: especially loved ones for their love and energy, and professional help for their experience and giving you moments of breathing space when you feel lost.
-pain medication should be advised by your doctor: opium based medication is strong, but again, when you see pain on your father’s face, it indicates that there is still pain.
Hope this helps you a little, but do feel free to ask many more questions.
Hugs!
First off I’d like to give my condolences to those who suffer from this terrifying disease and their family members who as well go through the sufferage. A few days ago my father and was given terrible news pertaining his health. His dr. found cancer in his liver.It was a blend of emotions; anger then sadness, its been a nightmare since day 1 when he was diagnosed with colon cancer, three yrs. later they found a tumor in his brain and cancer then spread to his lungs,now its his liver, due to his age and past history its been an even harder trial for him. I’m devestated because I love my father so much and its very hard for me to see him suffer. I’d be very grateful if someone would guide me and give suggestions on what I can do to prolong and give my father a ” quality of life ” with the least pain possible…anything would be appreciated..thank u…
KATH-E…HERE AGAIN…PRAYERS ARE WITH YOU ALL…WELL TUES 6/8…TOMORROW ALREADY…THE UNDERTAKER IS COMING HERE TO MY APT SO THAT THE FINAL ARRANGEMENTS MAY BE MADE FOR MY SOON TO BE DEATH…
THANK YOU JESUS FOR NOT LETTING ME BE IN DENIAL AND ALLOWING THE TOXINS TO HAVE NOT FULLY TAKEN CONTROL OF MY BODY…
IVE MADE MY DECISIONS BEC I COULDNT BEAR THE THOUGHT OF HAVING MY ONLY CHILD WHO IS 40 TO HAVE TO ENDURE THIS SORT OF THING…
I DONT KNOW IF WHAT IM DOING IS RIGHT BUT I JUST WANT TO SPARE ANYONE AND EVERYONE THE PAIN OF DEATH…LOSING SOMEONE THAT YOU LOVE…
ITS FUNNY HOW YOUR LIFE JUST DOES SEEM TO GO BY…AND I FIND MYSELF REALLY THINKING ABOUT MY ENTIRE LIFE NOW…
ALL THE RIGHT DECISIONS IVE MADE IN LIFE…AND THEN THE DECISONS THAT WERENT SO RIGHT…
I DO HAVE MANY REGRETS HOWEVER…BUT SOMEHOW THIS ISNT AS HARD AS I THOUGHT IT WOULD BE….HOWEVER
THE HARDEST THING IS WATCHING MY 40 YR OLD SON NOT BEING ABLE TO HANDLE THIS AT ALL…THATS BEC HES IN DENIAL AND WONT LISTEN…
THANK GOD FOR HIS LOVING WIFE WHO GIVES HIM THE SUPPORT THAT HE NEEDS BEC IT APPEARS THAT MY SON AND I CANNOT BE IN THE SAME ROOM FOR MORE THAN 1 MINUTE…
MY SON CANT STAND TO LOOK AT ME ANYMORE BEC OF THE DETERIORATING CONDITION OF THIS HORRIFIC DISEASE…ITS SO DEVASTATING IT REALLY IS…
ALTHOUGH EVERY DAY IM HOPING JESUS WILL GIVE HIM THE STRENGTH HE NEEDS TO GET THROUGH THIS…
ITS NOT SO MUCH THE PAIN…THE FEAR OF THE UNKNOWN…THE FACT THAT ITS INCURABLE AT THIS TIME….
NO ITS JUST THE FACT THAT MY FAMILY …MY SON…MY TWO GRANDCHILDREN AGES 15 AND 22…
AND MY GREAT GRANDDAUGHTER AGE 2 1/2 OR MY GREAT GRANDSON YET TO BE BORN ON DEC 30 2010…
WILL NO LONGER HAVE MY LOVE…I WILL NO LONGER BE ABLE TO GUIDE THEM AND GIVE THEM STRENGTH AND COURAGE TO HELP THEM MAKE PROPER DECISIONS…ILL NO LONGER BE ABLE TO PROTECT THEM ALL…
IM SPEECHLESS FOR THE FIRST TIME SINCE IVE BEEN ON THIS SITE….
CRYING…CRYING…CRYING…NOT JUST FOR MYSELF..MY FAMILY…BUT FOR ALL OF THE METS PATIENTS OUT THERE…
BUT FIRST AND FOREMOST ILL NEVER STOP LOVING OR CARING WHEN IM GONE…AND NOT BEING IN DENIAL HAS MADE THIS SO MUCH EASIER FOR ME…
CRYING AGAIN…FOR THE HURT AND PAIN MY DEATH WILL CAUSE MY FAMILY…THIS BOTHERS ME SO MUCH…EMOTIONAL PAIN IS THE WORSE THAT ONE CAN ENDURE….
TOMORROW IN LESS THAN 24 HOURS ILL BE ENGAGED IN A CONVERSATION TO HAVE MY BODY CREMATED AND THE SHES DIRECTLY BURIED WITH NO OBITUARY…NO VIEWING…NO SERVICES OF ANY KIND…BUT PLEASE UNDERSTAND THAT THIS IS SOMETHING I FEEL I MUST DO TO PROTECT THE ONES THAT I LOVE …I DONT WANT THEM TO REMEMBER THAT DEAD BODY LAYING THERE SAYING WELL SHES AT PEACE NOW…AND THEN HAVE THEM LIVE WITH THAT VISION OF MY DEAD BODY FOREVER…I MAY BE WRONG BUT MY MEANINGS ARE RIGHT…
WOW EVERYTHING IS HAPPENING SO FAST RIGHT NOW…IM SORRY THIS IS NOT PLEASANT BUT ITS REAL AND ITS TRUE…
GOD BLESS MY FAMILY
AND GIVE THEM THE STRENGTH AND
LET MY DECISONS LIGHTEN THEIR LOAD!
AMEN
Hi Kath-e,
Now you got me crying as well, but hey, life is all about sharing emotions
Don’t be too hard on your son: everybody reacts differently and some don’t know how to deal with it, especially when it’s the first time.
In our family similar story: some could help out if and when they could, others reacted like your son and tried not to be around.
It’s just basic human nature: 1 runs away, the other 1 stays, but both love you equally.
And at the end of the day, it’s no longer about words, but about who you are and how you have been for each other.
Lots of hugs and God bless!
Kath-e
you and your family are in our prayers.
You said it yourself, you will never stop loving and caring for the members of your family even from the Other Side. You will always be there to protect them and guide them. When my dad passed away 2 months ago, even though the pain and emptiness of his passing is forever present, his love, his guidance and his teachings are his legacy. I, my husband, my children, my brother and mom talk about him every day. We are comforted in the knowledge that daddy and granddaddy is looking after us. Please find comfort in knowing that your family will be ok as you will be in God’s loving arms and you nor God will abandon them.
Bless you.
Carol
Kath-e,
I’ve never met you or seen your face, but you sound like the most beautiful soul in the world to me right now. As I read your posting, I could feel your anguish poring through your words but I also felt the love you have for your son, your daughter-in-law and your grand (and great)children.
So much hurt as your son averts his eyes from you as he knows your time is close at hand. His hurt is unspeakable as well.
You are wise to plan out your end-of-life choices especially since it appears your son may be have a difficult time handling them himself. He may not be thinking about it now, being that he’s in apparent denial, but he would want his children, your loving grandkids, to have the opportunity to pay you their respects and say good bye to their Nanny.
It is an important time and end of a difficult journey for you. As much as you want to “lighten their load” you don’t want to totally deny them of their chance to grieve for your loss.
I don’t know you; you don’t know me but you sound like a wonderful woman, someone I would have loved to have met. Your legacy IS enduring.
Best of love and tread gently along your final path.
Jeri
My oldest brother has stage 4 metastic liver cancer, primary was from his colon. He was diagnosed a year ago last July, so nearly a whole year ago and he was “given” 18-22 months to live. He’s 72, divorced, usually lives by himself in his old house. A “late bloomer” he’s got 2 kids, 20 and 22, who are living w/him for a few months over summer break.
He kept his recent diagnosis and prognosis a secret from his kids and the rest of the family until we accidentally found out early this year. He’s now on a second line of chemo and apparently getting ready to try something else. I’ve tried to approach him about his estate plans and what he wants to do end-of-life-wise. He doesn’t talk to his kids, our mom (she’s 93 and very sharp and still robust) or any of our other siblings.
I’ve accompanied him to one of his oncololy appts. and tried to keep the door open to him. My question is this: He’s asked me to go to another appt. this week and I want to know what questions I should bring up to address his end-of-life options, in particular hospice?
While I’ve helped with other members of my family I’ve never experienced hospice. My brother’s been secretive about so many things, I imagine he doesn’t want to share any financial info w/me, which is fine. But becuz of his relatively young kids, I’m afraid that they won’t know what to do not just when he passes away, but in the time before that, when he’s feeling really poorly and in pain. He’s a former politician so he has a wide circle of acquaintances but no true friends. He goes to several churches but can’t confide in any pastor.
I don’t know how much I can help him. We weren’t close growing up with 15 years age gap and we’ve had a lot of differences as adults. I’m the only one in my family who’s able and has reached out to help him. While I respect his right to privacy, I worry about his kids and also his struggles. He’s never said, leave me alone yet, and I wonder if I should just butt out and stay involved. Any thoughts?
Hi Chibi,
In your previous comment (27th of May) you wrote:
“I take it he doesn’t want anybody’s help, maybe not until he can’t do things by himself anymore.”
This sounds like a “logical” idea when you are healthy. However, it is advice-able to surround your brother now with the people that are going to help him until he can’t do things by himself.
Why? Because it could be possible that in a later stage he wont accept help from strangers. Same with my father: introducing a new person or a new treatment when the liver is preventing your mind to think clear, is no longer obvious.
However: if your brother doesn’t want the world to know he needs help, you must be able to introduce him to the care-givers, “without the rest of the world to see”.
In our experience: we contacted all the help we could get, simply shared our story, and with a lot of aggressiveness got a team together that really did the best they could and made all possible. Just for your info: months after father passed away a person ringed our door: “we heard you are looking for hospice, how can we help?”
The only questions yo need to ask are: what can we do, what can you do and how can we do it together? They will then ask you ‘the right questions’ and you just share them your story, including tears.
Like we said before: some ’services’ will reply fast, some not, so your main effort is to find as much people possible that could help you in any way.
Practical things about hospice:
-is it free, covered by your insurance?
-what do they offer?
-how much man/woman power do they offer how many times a day/week?
-how much experience do they have, are they familiar with a story like yours?
-do they know anybody else that can add extra help to form a stronger team?
Main thing is that hospice will become your friend, and not only help you out in caring for your loved one.
I would suggest you call them now and ask for an appointment asap. The one mentioned above that came “too late” worked on a national level, so do try out a few contacts and see which one works the fastest to start with. The hospital you go to should also be able to give you names to contact.
Hope this answered a few of your questions, if not, please ask more.
Hugs and God bless.
let me share with you…do yourself a big favor and call hospice right now…they are there 24-7…they are so wonderful and quite helpful in more ways than you can imagine…they make a difficult time so much easier…there very caring and giving…they are about the living not the dying…they want the patient to be as comfortable as they can possibly be…they will do everything to help you …they will be able to answer any and all of your questions…give you your options…i dont know what i would do without them…and they want the patient to have the best quality of life thats possible! do yourself a favor call your county hospice you will be glad that you did! god bless many hugs n prayers!
To Secondary Liver Cancer and to KATH-E: Thank you both for replying to my postings. I didn’t realize I made the first post on 5/27! Obviously my brother’s situation has been weighing on my mind. On top of that, our 93-year-old mom was with Dick Monday when she fell flat on her face, fracturing her orbital rim (the bony structure around her eye)! In the chaos, my brother couldn’t take any action or make a decision despite my repeated requests he just drive her to the ER. Then when he was talking w/the doctors, he couldn’t get the information straight and I was finally able to take over.
In reading about the later stages of his disease, I couldn’t help but wonder about his state of mind. I appreciate your advice on enlisting hospice care now even though he’s not “that bad” just yet (I don’t know for sure as he hasn’t shared too much until now). I guess I had no idea getting a hospice plan in place would be so challenging?
I hate to sound selfish and uncaring, but I’m somewhat reluctant to get “too involved” with Dick’s situation. He squandered away his political career, his marriage of 20 years, and his relationship with his kids and his family by being irresponsible. He has a lot of current troubles that will be overwhelming for anyone to handle (debts, a deteriorating house, disorganized records, etc.) even in the best of health. I don’t want to pat myself on the back, but I’m the one who usually has to lead my family out of various situations and it puts a huge strain on my own marriage. My husband resents that we’re the ones doing the heavy lifting while everyone else piles on.
I know Dick’s life has been miserable before his cancer and it’s considerably worse now that he’s sick & dying. I feel I’m probably the only one with the time, resources and logic to help him the most. If nothing else, I plan to bluntly ask the oncologist a lot of hard questions, even if Dick himself doesn’t want to ask — or hear — them. I’ve seen what happened with my elderly dad when he was rapidly failing from bile duct cancer and the “H” word (hospice) was pointedly avoided even when I tried to bring it up with his doctor. Mom was filled with all types of false expectations as he was sent to rehab because she thought if the doctor didn’t think hospice was needed, then Dad must be all right. He stayed less than 2 days in rehab, was sent back to ER and died 2 days later. From what I’m hearing and reading about the benefits and advantages of hospice, I really want to utilize it for my brother.
I am so glad I found this website about metastatic liver cancer. The support, the information, both personal and technical, are wonderful. Thank you for listening and sharing.
Chibi
kath-e…here again to lend some advice to the person that didnt leave a name…
quality of life is what its about…quote unquote…and for that ild recommend hospice..they want you to have the quality of life you deserve…they want you to be pain free as possible…they want to help in any way…they become your family in every way and meaning of the word…
hospice is for the living…to give the best quality of life to the patient….they strive on quality…they are limited bec of lack of people working with hospice however they can provide some housekeeping chores…getting groceries…meds…they want to see you up and functioning for as long as possible …
be rest assured that your local hospitals have home health aide services where they can give time every week perhaps even up to 3 days if needed…
also to let you know hospice will allow you to live at home and be under there care for your pain meds…and its these meds that take away your undescribable pain and make you feel whole again…almost like a burst of energy to do things and painfree i might add…
unfortunately the time will come with metatastic liver cancer in the end stages where the pain will increase severley and the appetite will decrease severely just as well…and thats bec the cancer is growing and pressing on other organs whereby causing this horrible pain…the meds will take care of it believe me and they wont stop until they get the right dosage and the right med (most likely of the opium family) bec that is the class of drugs strong enough to relieve that kind of horrific pain…
and then the pain comes from eating if your able to bec there is just no room in your belly for the food and this will cause you chronic abdominal and liver pain…however all of this pain is treatable and most always its instant relief…
you must realize the end comes all to fast and your condition will begin to fail you day by day…so …
enjoy quality time while your able to ..bec soon the day will come and you wont be able to have quality life anymore…and thats only bec the liver will have failed and the toxins normally filtered out by the liver will rush to the brain…the brain will not know what to do with this toxic overload and may begin to shut down as well…taking with it …your quality of life altogether…liver failure is imminent and happens very quickly…every day of your life will be less than the day before…and will continue like that until the end of your life…you will still be pain free however your liver and brain will stop functioning altogether…
come out of denial about mets liver cancer is the first step…bec in order for you to be good for someone you have to be good for yourself first and foremost…you need to understand the obstacles the mets liver cancer patient will face…so you can be strong in spirit body and mind so you can help them to be that way…
once the confusion of the patient sets in and gets worse their condition will deteriorate severely…
this is a great website here and you will benefit from it as long as your not in denial and can face facts…you will never be alone…and we all understand what its like…either as a patient or as a caregiver…
i say to all mets liver cancer people and their families and caregivers…with this disease it is about quality bec that is the only thing that matters!!! so i say either give or get that quality of life you or yours so deserve right now!!
hospice is a great place to start…im sorry to say this but i have found that they are more understnading of this than my entire family…i dont know what i would have done without them in my end stage of life here…
hugs love and prayers to all!
patrick…kath-e here…just read your writings and wanted to share this with you…
when your life is at its hardest point and seems to become unbearble…lift it to the lord…yes the lord…ask him to take your pain and suffering away and help you become stronger so that you can be there for your dad in every way…he will take your pain and anguish and help your life become more bearable …he will help you make choices..the right ones and he will guide you forever…that is if you just let him…jesus loves you never forget that and he does listen …so i say start speaking now…
my prayers are with you always!!
Think about it Kath-e and all:
Why is it so “easy” to get a team hospice, and why is it so difficult – almost impossible – to get a team of people that really want to do all they can to make sure you beat the cancer?
I do respect hospice and the work they do.
But if my father would have had an equally strong team that was doing everything they could with all means available to cure my father, my father would have taken the chance and fight it.
And it boils down to economics: what does it cost to send 3 nurses a day and some help to do the shopping, cleaning and somebody that get’s you through it emotionally. And all this knowing the recurrent cost won’t go on forever.
Now what does it cost to get the best team of doctors, oncologists, oncology nurses, immune system experts, relaxation experts, nutrition experts and all the latest medicine. With no idea how long the recurrent cost of prolongued treatment will take?
It just show the little price lots of governments and health insurances are putting on a person’s life.
I am only talking economics here, I do appreciate anybody helping out.
Hugs and God bless!
Hi Chibi,
You are most welcome and please ask all questions or thoughts that come up.
I have some tears in my eyes at this moment, because of your and Kath-e’s story.
Hospice: go and talk to them asap, because time is an issue. They will decide if and how they will approach Dick, so you don’t have to break your head there.
Go and talk to your brother’s doctor without your brother being there. Because when a doctor takes away the hope of a patient by saying: there is no cure, you need an utterly strong patient to swim against the flow. However the doctor can speak his mind when the patient is not listening. If you can’t get an appointment, then use your or your brother’s GP to ask the right questions: doctors talk easily to their colleagues.
Why is it difficult to get hospice? Because of a lack of manpower: the number of terminal patients is rising, and it’s very difficult to argue that “your terminal patient” needs more attention than “the other terminal patients”.
Every family has a lot of different characters. For a character like yours that seeks for answers and is able to organize things, you must be thinking; “what is wrong with the rest, it’s obvious that something needs to be done”. However for some reason I don’t understand either, some family members just don’t get it. Maybe they aren’t put with their nose on the facts, and maybe they are the ones that freeze when a difficult situation rises. Freezing from fear is unfortunately a deep, fundamental human emotion, like running away or attacking the problem head on. Seems you are the latter Chibi.
Now your husband has a point: why you and not the other family members? That’s again another reason to get hospice involved: you need to tell them the situation and also how your husband feels. They can only access the situation with the information you give. If you leave your husband’s resentment out of the picture, they will have no clue that they have to add an extra effort in order to make sure your husband can support you enough to get you through the whole situation.
Bottom line is that care giving is hard. Suppose you + hospice would be the sole caregivers, and your husband’s resentment or just you being too tired leaves you no choice than to choose for yourself and your marriage, then hospice wont be able to carry on either because they didn’t know they had to put in more effort then they could make available.
No hard questions, but just share to hospice what you share here.
“state of mind”: once the liver fails to clean the blood that goes to the brain, the brain gets confused. Compare it with the stories you hear from people that are shipwrecked in the sea, or are walking in the dessert without water. Hallucinations are a direct cause, not being able to do something that you have been doing all your life, no more able to think straight, answering a question that was asked 30 minutes ago, not understanding why you need pain medicine because you don’t feel too much pain … And suddenly the opposite: utterly vivid as if the brain was as good as ever.
When you talk about selfish and uncaring always know that: you can only help others when “all is ok” in your life and you have some extra time, money, energy left that you can give away without needing to get it back. If you have “extra” help to spare, you are good. If you are cutting yourself in order to help others, you are damaging yourself big time.
Just a practical example: if you are the one doing all the heavy lifting and suddenly you break your leg, then the whole pile falls down.
A better strategy is leverage: you organize a few pillars that can do the heavy lifting, so you can lead your own life and the piles are still being lifted.
You seem to be an organizer Chibi, so use your good qualities to organize others to lift the weight!
Practically there are 2 directions: cure or care.
Cure, like with Jim’s son secondary liver cancer survival means: organizing a team of doctors, nurses, who want to go for it. And you need the money to get things done + the patient needs to believe 100% he can beat the cancer. Organizing a team of specialists is very difficult when you don’t have “insiders” in the medical world that can pull some strings. On top of that, the team will face challenges because we all know how little times a team has been trying to cure a metastatic liver cancer patient successfully.
Care: is easier to organize as it’s very easy to contact hospice, cost less and – with a little push if needed – get things going with proven strategies, because they have done it before many times.
With cure and care; you can clearly see that you can only be the organizer to get the ball rolling.
Do know that with hospice, you are not out of the woods from the moment the cancer patient passes away. At that moment all your adrenaline will stop pumping you up + the grieve will start using up extra energy. You will need an extra boost from your loved ones around you. You cannot afford a husband that is not there when you need him the most.
Bottom line: you cannot do it alone Chibi, you are only one person with “obligations to yourself, your husband/marriage and your mom”. So call hospice and let them help you in deciding how to deal with your situation.
At the end of the day: when Dick doesn’t accept any help, you can sleep in peace that you went the extra mile and did all you could to help him.
Hope that helps a bit Chibi, I can sound crude here, but there is no use in sugarcoating palliative care.
Hugs and God bless.
To Secondary Liver Cancer (do you have another, shorter “handle” I can use?): Again, I appreciate your thoughtful and insightful advice and thoughts.
FYI, I was able to talk to Dick’s 2 college-aged kids about coming to their dad’s oncology follow-up yesterday. The younger kid is a 20-yr old daughter who had already decided to come becuz she knew her dad has asked me to. Her older, 22-yr old brother, on the other hand, was “too busy” with work and couldn’t make it. I wasn’t surprised that he declined to come because of the friction that’s been going on between him and his dad.
So, regarding Dick’s appt. and condition, I drew up a list of about 15 q’s to ask his doctor including how he’s doing on his current therapy, what his current prognosis is, and what if any future therapies she was considering for him. I also asked her to talk about the various symptom to see which was he was experiencing or which ones he should be on the alert for going forward.
I’d faxed the doctor these q’s prior to the exam along with a separate memo explaining his family situation and asking for her assistance in helping to open up the floor for discussion and to explain palliative/hospice care. I’d already done a lot of research on my own (plus I’ve had some experience with another brother who had stage 3 colon cancer and our mom who suffered traumatic brain injury due to a bad fall earlier this year in addition to my husband’s own bout with cancer and morality issues). I wanted to openly discuss these topics for my brother’s benefit as well as his young daughter’s.
She basically said, somewhat misleadingly I thought, that he was “improving” and that she plans to continue w/this current therapy. I asked for clarification on what she meant by “improving” and she explained that the tumors in his liver and in his lung wall had slightly shrunk from his last CT scan in April and hadn’t changed since although he’s putting off another CT until after July.
Then she segued into palliative/hospice discussion saying that his cancer ins NOT curable (I felt he and his kid both needed to hear this together) and the chemo is basically palliative, trying to prolong his life by keeping he tumors from growing or spreading further.
His hemoglobin is “less than 10″, his vision is mysteriously blurry, and his neutrophil count is low, but she didn’t seem very concerned. I asked what precautions she had for him when he takes a 10-day road trip by car to Yellowstone Park and out to Utah and Idaho to visit relatives (a final hurah trip). He’s wanting to drive with his kids over the 4th of July, a very hot and crowded time. She basically said he should do fine and to just take along his meds for nausea, diarrhea and altitude sickness.
She also said that hospice wasn’t appropriate for him at this time but that she’d expect him to inform her when he’s in more pain or noticing more swelling (his feet and ankles are swollen) or feeling really poorly as she’d manage his symptoms. So, while I appreciated her taking more time than before in March when I went w/him to discuss my concerns, I still felt she was somewhat vague. I like your suggestion that I try to have a one-off talk w/his oncologist where she can be more open about discussing his situation. But right now, he’s only got his son down as an emergency contact, the one who doesn’t talk much to his dad.
I had planned to continue a dialog w/him and his daughter after the exam so that I could ask him about whether he had his “affairs” in order and to also allow more people access to his information since his boy is not very reliable. Unfortunately, he had an eye exam later that day and we didn’t get a chance to meet again.
He has several doctor appts. as well as various meetings or events he’s always trying to go to (he loves the public life), so it’s difficult to pin him down to talk seriously about these matters. I’m always having to follow up or pester him about this or that. I guess I’m just going to have to insist on sitting down to specifically talk about these matters.
I’m afraid I can’t contact his doctor until my brother authorizes me to do so and I can’t discuss hospice since his doctor indicated it was not appropriate yet and that she wanted Dick to let her know when he “had enough.” Not too helpful.
When I spoke w/his son today, I asked if he knew whether his dad had executed the various estate docs and health directives and explained them to him; he said “not really.” I get it that his son is clueless but he actually said he didn’t understand what he signed and that he can’t talk to his dad.
I’m sorry, I’ve gotten really tired and will end this for now. I probably am not being very coherent. Dick just called me (11 pm) to ask me what his daughter’s phone number is. He keeps “losing” the number and his cell phone.
Later and thank you!
Chibi
Hi Chibi,
Kim is the shortest handle you can get
It shows you have done this before, you are doing great and very coherent.
The doctor is clear in saying that she is NOT curing the cancer. From that decision onwards, Dick is a palliative patient and hospice can step in.
Hospice is there for all caregivers, and you clearly are a caregiver now. I agree that hospice cannot help Dick if Dick doesn’t decide to at this moment, but hospice can help you now. They can answer a few of the questions you are asking in how you should deal with this situation.
In an ideal world, Dick not contacting hospice is logical. But Dick contacting hospice when he needs them and his energy levels are too low to do so + hospice being ‘fully booked’ at that time: it’s a common reality you can overcome by contacting them now. You and hospice talking about how you can help Dick before Dick needs hospice.
You do have to tell them your story sooner or later, and for best results, I strongly advice you to do it now. They will decide, listening to your story and Dick’s oncologist’s advice.
You have made Dick’s kids clear – I have the impression – that their father is dying. (We are all dying, but lots of us tend to forget that). However, dying with metastatic liver cancer is not a nice way to go
As you said: Dick’s feet and ankles are swelling. You can ask the doctor if that’s from the chemo, medication, or in my father’s case: a direct consequence of the liver slowly being less able “to do the job”.
“improving”: we heard the word as well. Father was going down hill and during that trip, there are ups and downs. So the ups are called “improving”, the bottom line however is going down all the way.
The doctor is not too concerned about haemoglobin “less than 10″, blur vision… Again you need to see this in the overall perspective: there is no cure, we know that Dick is very sick, so it’s not relevant to compare his readings with those of a healthy person. The body is amazing that even when all the blood readings are utterly wrong, a person still doesn’t look that sick at first sight.
The doctor is not too concerned about haemoglobin “less than 10″, blur vision… Example: Patrick Swayze who had pancreatic cancer spread to the liver was still smoking. “Oh dear” you could say: “smoking is oh so bad for your health”. True, but compared to pancreatic cancer, smoking a cigarette is as dangerous as lighting a match next to a burning house: it’s no more relevant.
You can always talk to your GP/doctor for some clarifications about the medical issues, especially when your GP has experience with cancer patients and palliative care. He/She can answer the medical questions that I illustrated above.
The 4th of July trip: as far as I hear the oncologist, she finds Dick “ok” for now. Love and motivation to do something are very strong powers for the body to keep it going, both in sickness and health.
Dick’s son who has friction with is father. This is something hospice can address. Do know that anger becomes an extra ingredient during a cancer story. And if you don’t know that, then you can understand that things can escalate, due to an extra portion of anger that is not “channeled” in a good direction.
Also hospice could answer you what to do with the emergency contact being his son, when his son is not in the best terms with him. Easy solution: why not put 2 emergency contacts.
You want to talk, but Dick doesn’t. Again a question for hospice how to deal with this. If Dick’s “quality of life” is pretending he is not sick (which is perfectly human), then you have a more difficult task in talking to him. Since he likes public life, go to a public place with him and you both have your way.
Anything other vague you want to have clarified Chibi, do ask here.
The one on one talk with the oncologist is advised as well.
Hugs and God bless,
Kim
Kim,
I feel like I’m spinning my wheels! I took our mom to the oral surgeon to determine if she needed to repair her fractured eye socket. Dick had planned to be take her but asked if I could pick her up as he was trying to “take his time” driving over from his own appt. with an opthamolgist. He’s been dealing with blurry vision (not cataract) for a few weeks now.
He met up w/us in time for Mom’s appt. and it turned out the doctor didn’t recommend surgery (good news-bad news because she’ll have double-vision forever). As usual Dick jumped into a number of side conversations with the medical resident, his assistant and Mom’s doctor, e.g., “I should speak w/the Chamber to ensure this teaching hospital receives the proper recognition” and “Ya missing kimchee?” (to the Korean fellow!) and “You know, I’m having some vision problems myself…” After a few deferrential moments of silence, I butted in as these doctors were obviously behind schedule and didn’t need to be playing “20 questions” with Dick about HIS eyes. When they politely chatted about what might be the cause, asking about meds, recent problems, I finally said, “Yes, he’s been taking chemo since last fall for his metastatic liver cancer, and he IS seeing an opthamolgist.” Of course they deferred to his specialists.
Later, I asked him who he had for emergency contacts and he pointed to our mom and mentioned his son. I said that for next-of-kin that made sense, but shouldn’t he consider his daughter and perhaps a sibling or me given Mom’s own issues and her age (plus she can’t drive anymore)? I also said I’d like to talk to him about getting his final affairs in order but he got distracted by some nurses and said he had to get his WB booster shot and Mom had to go to the bathroom!
During coffee at the hospital, I informed Mom she was one of Dick’s contacts and she said she didn’t know what his final wishes are. I suggested she sit down with him to discuss this and she said that he doesn’t like to talk with her and that he’s so hard to sit down, something I’ve mentioned before. He gets very sullen and defensive. Why is it so hard for our family to discuss important matters? I asked Mom.
I think Dick wants to believe that his son will take care of him and become responsible (when pigs fly!) when the time comes. I think he also wants to continue avoiding the fact of his situation. OK, Kim, I must admit I’m playing a game, too, being P-A about trying to help yet playing “coy” with him. Hoping he’ll ask me to help him rather than my directly offering. Shoring up his kids, my mom and my siblings with ideas and indirect support but not being upfront about my own intentions. Perhaps I’m just afraid of my own limitations or perhaps reluctant to get caught up with all the messes he has with his life and family both before and during his cancer.
But I see a train wreck around his corner. The same’s true for our mom with her declining physical condition and our other brother who although a colon cancer survivor is in horrid physical shape 5 years later. My family in town is comprised of 4 singles: widowed Mom (93), divorced brothers (73 and 68) and never-married emotionally unstable sister (60). They have a big love-hate and bicker about everything. They’re all involved in Mom’s social life and business so they’re constantly together at work and at play.
So one person’s problem becomes the others’ problem. I’ve kept a healthier distance but as the “baby” there’s resentment about my not keeping in my supposed place. That is why I’m hesitating about jumping in w/both feet as I’d land in the overlappying messes of the others.
I know, I know, this isn’t a family counseling site but I wanted to explain a bit why I’m not being more forthright with Dick.
I just got a call from one of my favorite cousins in the state where Dick is wanting to drive to next month. She heard from her mom that Dick wants to meet up all these relatives in all these towns and wanted to get his itinerary plus she expressed her concerns about his health and driving all that distance, etc. I thanked her for her concern and briefly explained his doctor has given him a green light to make the trip and suggested she call Dick directly about his trip plans. Then a different cousin called with basically the same questions and concerns.
I’ve suggested to Dick that he write up an itinerary and write/e-mail it to a few of the relatives. It’s just that he’s so disorganized and unreasonable I feel that I’m swimming upstream against the current w/him and my family.
To be continued… Thanks for listening, again.
Chibi
Kim,
Your words are full of comfort and support to me! Obviously, you have been-there, done-that! I hope to play it forward to others someday when I’m in a better place.
Dick’s 20-yr-old daughter has been stepping forward these past few days, I’m pleased to say. Because her dad has been in such denial he’s not let his proverbial hair down w/anyone. He’s been putting on such a good front (and being a former public official, he loves being around people even though his off-putting ways had been isolating him before his illness) so I’m sure it’s been extremely stressful for him as his appearance belies his cheery manner. Especially since his relationships with his siblings, son, and mother have so dysfunctional. Since going w/us to her dad’s oncology visit last Friday, she’s accompanied him to his eye exams to deal with his ongoing vision problems, i.e., blurriness, and to his impromptu PCP exam yesterday.
Re: his blurry visions. Apparently cataracts has been ruled out. When we discussed it w/his oncologist, she wasn’t too worried which, in the big picture, is understandable. Bigger fish to fry, so to speak. She did mumble something about possibly his chemo could be a culprit. The opthamalogist is trying 24/7 protective contact lenses to allow his eyes to heal, not that they itch or burn. That doctor is unsure of the source of the irritation. Since he’s been on chemo since last September (he’s on his 2nd line now), I couldn’t help but wonder if it isn’t chemo causing his vision trouble and if so, how long he/the doctor would consider continuing treatment. He’s still driving himself around with vision like “rain showers” and is still planning the mountain trip from Nebraska to Yellowstone, Utah/Idaho and back over the 4th. Anyway, the good news is that his daughter said his PCP doc will be following up w/him prior to the trip and he’s still seeing the eye doc.
The better news is that I’m sure he’s tremendously grateful that Vicki is actively supporting him. She asked me a number of q’s about what to anticipate for the trip beyond the normal planning topics although her dad is notorious for his lack of organization and reliability. She did ask him if he had his affairs in any order and while he claimed he does or is “working on them” she couldn’t get him to show her where any of the documents are. (He’s likely not comfortable sharing this info w/her just yet and/or doesn’t have them.) Unfortunately the friend he’s chosen as the primary is elderly and often away so the backup is just his son. I’m talking about emergency contacts, POAs for health/finances, and executor for his will. His son confessed to me last week that he has no clue as to what legal docs he signed last fall when his dad had “mystery” surgery which turned out to be 4 bypasses (he didn’t tell Mom or any of us and he sees us almost every day).
I told Vicki that I’ve been hesitating about directly asking her dad to be at least one of his backups for several reasons. I’m concerned that as his baby sister he might not be comfortable my helping out the eldest brother. Because of the large age difference (he’s 72, I’m 58, his ex is 57 and his daughter is 20), he’s always treated us like his children and grandchildren versus his sister, wife and daughter. Also I remain close to his ex-wife and he’s still very bitter since his divorce 3 years ago that ended 20 yrs. of marriage and fears that all his assets have and will be drained by her.
OK, I know this isn’t family counseling website. While I’d like to initiate contact with palliative care, I’m unable to if I’m not on record with his healthcare providers as one of his authorized contacts, right? I’d need to gain access to his medical information first to even start a discussion with palliative care.
To exacerbate matters, our 92-yr-old mom fractured her eye socket and was seen by an facial surgeon on Monday. Dick came w/us. Because of her age, they’re not recommending corrective surgery so she’ll be stuck w/double vision with extreme gaze angles. Dick can’t see well either. Our other brother who is a 5-year stage 3 colon cancer survivor, is being told his type 2 diabetes is worsening again and his vision is declining. That brother works and lives w/our mom and drives. Mom wants Dick to move in w/them. They’re ALL deteriorating. A lot of stress on the family as the older members (92, 72, 68) experience more health and lifestyle issues. I also have 2 older sisters, 64 and 61, who are morbidly obese and don’t have diabetes or cancer…yet. One lives out of town and the other who lives here is emotionally unstable. She’s very emotionally dependent on Mom and extremely jealous of the other brother who’s with her. She fights w/everyone and yet overdoes everything.
I’m sorry; I’m digressing big time. I dread the future of not only Dick but my entire family. I’m grateful for my health, my supportive husband (for the most part!), my kids, and all my creature comforts. I feel guilty for keeping distance from my family for years until about 10 years ago when Dad was ill and died. But I’ve stepped forward to manage several major family crises since, and while the family may not have very grateful, I know they appreciated someone handling their messes. My mom has often said that some people have “good hearts” which I’ve interpreted as she doesn’t think I do because I have a “good head.” Hmmm, backhanded compliment? I think with my head first while the rest of my family tends to think with their hearts first.
Anyway, even if Dick declines my offer to directly help, I’m going to continue supporting him in what other ways I can including his 2 kids. Call it obligation, guilt, responsibility. I know, “love” is missing, what can I say?
Thanks, Kim, for listening.
Chibi
Hi Chibi,
Thanks for sharing what caring is all about: 1001 things at the same time and all kind of questions popping up about not just ‘the patient’ but about your whole life and your whole family.
No need for more words because your actions speak louder than any words could.
Great achievement that Vicki is “onboard”.
Will comment more tomorrow, it’s about time you make some “you time” for yourself and re-charge your batteries a bit before pushing the wagon again
Hugs and God bless, thanks for sharing!
Kim
Kim, I stumbled across a short article today by Jame Smiley entitled, “What I Believe: It’s Nothing Personal.” She wrote that “…people have histories and motivations that grip them in ways they don’t grasp–ways you don’t have to respond to.”
Going through a painful divorce (her husband left her for another woman), someone told her one sentence that rang true to her. It was “There is nothing personal going on here.” Meaning that she had to grow up, step back and view her turmoil from a distance; that “my life in the world around me is better understood when taken not too personally…fear recedes. Anger recedes. Patience sets in and, like a reader, I get interssted. What will happen next?”
In reading this article, I’m beginning to see that there is a “larger pattern to my life than these fears” and “what is going on is worth contemplating.” But I don’t have to respond to these passions, motivations and histories of others automatically.
Somewhat liberating.
Best regards,
Chibi
Hi Chibi,
Thanks for sharing Jame Smiley: it’s true: from time to time you have to sit down and have a look what is going on around you
Back to your previous comment:
Yes, I have been there, done that, just like any other reader on this site. Do know I was not the primary care giver, not the second, but only the 3rd. So Kudos for all that live through it minute after minute.
Since I lived more than 10.000 miles away, I traveled back to help out twice: first to organize as much help as possible, the second time to add a helping hand because the help needed is just tremendous.
That’s why I advice you look for all the help you can get: both professionals as friends and family members. Rest assured: the hardest work normally is in the hands of the closest relative(s).
“possibly the chemo causes blurry eyes” if that is the case, then one should know how long it takes before the eyes are back to normal after chemo. Mumbling oncologists are not the best help. Chemo has side effects and it should be the experience of your oncologist that could have a good educated guess. I know, guessing is not what you expect from the medical world, but during palliative care, nothing goes according “the book”, so gut feeling becomes an important instrument.
You also mention other people in the family with not too good vision, so one should have a look there also if they ever ncounterd “blurry vision”.
Stress is to be avoided as much as possible, so up to Dick if he wants to give a different impression than what you would expect. Nothing wrong with that behavior as long as it doesn’t harm others. Cats also look their best when they are sick and you happen to come near them: showing strength is part of survival. However driving long distance with high possibility of blurry vision is no option. Do his kids drive, in case his vision is not like it should?
Since his son signed some legal documents, he should be the one asking those questions, how close is he to Vicki? So they can work together and come together as a trinity.
If you want to be at least one of the backups for Dick, you can simply tell him or tell Vicki. You can offer a hand, but it’s not up to you that it’s taken. Keep the hand in reach in stead of “making it a one time offer”: when one is drowning, one instinctively reaches out for the first hand available.
You ask: “While I’d like to initiate contact with palliative care, I’m unable to if I’m not on record with his health-care providers as one of his authorized contacts, right?”
There is no right or wrong here: a person who is reaching out to help is doing the right thing. OK, there are laws and regulations and for sure the health insurance plays a role as well. It’s all about finding out: what help is available and how you can get it. You don’t need to mention Dick’s name when you are calling any agency that you have a question about what help they are offering, what conditions they have.
Once you have a clear in understanding of who provides what at what cost and in which frequency, you have the homework done for Vicki, who as you mentioned has lots of questions.
Like Kath-e also metions: not only hospice is important, are there other health care people you can ask help from like: help for the elderly, help for the sick, help for the people with blurry vision, a cleaning service, a shopping service, a cooking service, a meal delivery service, a laundry service… All help you can find is needed when you want Dick to spend his life in the comfort of his home.
Another matter all together – one that we are facing here as well – is taking care of our older siblings. In the early days everybody lived in the same village and could add a helping hand fast and easy. It’s no more as simple now when people live dispersed in different cities, countries and continents. Elderly care is slowly growing, doctors that cater specifically to the elderly population are finally starting to come about, but the overall elderly care is poorly elaborated. Again you should ask around what help can be given by which services for what price.
Obesity is another matter all together, and in my eyes equally dangerous than cancer when not treated. Elderly care, obesity, cancer and diabetes: all very “young” diseases that our societies are not addressing properly and push back to the individual.
And yes
Every family has their odd characters…
And when your mom says that “some people have good hearts”, I would interpret that as saying “you have a good heart”. And there is nothing wrong with a good head on top of a good heart
“Anyway, even if Dick declines my offer to directly help, I’m going to continue supporting him in what other ways I can including his 2 kids.”
There you go Chibi, that’s what I call a good heart
Hugs and drop by any time Chibi,
Kim
chibi…kath-e here again..just read something from you dated recently…about lettting go and the back up sort of thing…
cibi…just let me tell you this ..for someone with mets liver cancer…its so hard not just for them …but for you as well…
you will feel that your walls are closing in and your options are less…you will find yourself stressing out more than your share…i understand what your going through and im so sorry…
but regarding your statement…mets liver cancer patients do lose touch with reality and that can become quick to happen…but it is that quick…and you do need to be prepared if that only means the right foot knowing what the left one will do…t
the toxins from your liver are now or will soon to be filling the brain…the brain shorts out because it cant handle the situation…the brain with all its functions are lost because the only thing it doesnt know how to do…is filter out the toxins…the job previously done by the liver
although never to be done again..
cibi..the road is long and the ride is rough…a never ending trail…just getting nowhere aint enough…pray to your lord now,,,hes all that you have…you need him for strength to carry you through…to keep your sanity to give your courage a chance to grow…let yourself rest you need it my friend…patience and understanding you will watch it grow now…ill will pray for you and yours and just remember you cant let go…you are now needed …thank you for who you are and what you stand for…i will pray for your pain both in suffering and for the healing…
god bless
kath-e
toto…kath-e here again…wow i know how you feel and im truly so sorry…there is nothing good to say about this cancer..its fatal…is it a primary cancer or did they get it from another part of their body…if its from another part of the body and it went to the liver its now called metastatic liver cancer aka…mets liver cancer…
there are very nice people you will find here and quite knowledgeable as well..more so than even the drs…everyone knows what everyone is going through bec that is what this site is about…
if you have questions…ask….someone will always be here for you…
i wish that i had something good to say bout this but i sure dont..i have mets liver cancer that spread from my lymphatic system…which is called non hodgkins lymphoma…its a blood cancer…and now its in my liver…
chemo or radiation or resection or any of them other treatments are not an option for me bec i have already done two years of chemo every three weeks for two years of a very high potent chemo…i never saw remission…anyhow im living right now with a 3-6 month diagnosis ..its ok..but ill tell you..the first thing and most important thing is you have to come out of denial about this fatal disease and realize many people die from it…lose their mind from it bec the brain cant filter out the toxins…but just know their is hospice where you can live at home and have caregivers…you will be kept pain free as possible as hospice is about the living not dying and they try to provide the best quality of life that they can…they are always there for you…
there are also home health aides that are there for you and youwill find as you go along everyone will share to you what worked for them..
ok ok
god bless you and yours
many hhugs and prayers
kath-e
Kim,
I am trying to stand back a bit and “recharge” as you aptly suggested. The sister who’s very unstable, dropped by my house unexpectedly last night. As 2 long-time singles, she/Dick used to be “a couple” until he finally married at age 49. Similiar in temperament, outgoing yet with no true friends, she complained about Dick’s son not being responsible or supportive and how his daughter’s too busy playing around and that their mother was a gold-digger, blah, blah. I tried redirecting the conversation back to Dick and how we might help him as his health further deteriorates.
She said that his son is the one who ought to step forward and he’s a lazy *#?@! She’s such a toxic and unhappy person that I could only cringe. My daughter was there with me and I suggested now was the time for us to move past old issues and focus on the present and future as it pertained to Dick. (She later told my daughter that I had abandoned the family and always sided with Dick’s ex wife and never helped our mother out.)
She went on to say that she took Dick out for a Father’s Day dinner because neither of his kids were around and that she’s going out to the cemetery tomorrow (Father’s Day) with our mom, Dick and our other brother to visit Dad and then have breakfast. Because it’s Father’s Day and she’s a good daughter to our deceased dad and mother and apparently a surrogate one to Dick! It’s hard to listen to her not just because of her vileness, but also just last fall she proclaimed she’d never come to another family event again at Mom’s. At the same time (this was before the family knew about Dick’s cancer), he announced that he’d never come to another family event tht Julie is at because of her explosive temper and constant criticism. She directs her wrath mostly to our other brother, but also to our mother, the out-of-town sister and occasionally to Dick, and his kids. Can you believe I’m the “closest” to her as our my children?
Just venting. By the way I tried calling a couple of local palliative care programs, one of which is in the hospital he goes to. Waiting for a call back. I’m hoping that the palliative people can help our family out, not that I’m expecting old issues to be resolved but to help us help Dick face down his cancer and deal with his end stages.
It’s a crisis that my family seems to thrive on yet while it brings us together, it’s like an emotional garbage disposal. My sister is like the shards of glass wanting to scorch the earth with her unhappiness. I’ve seen this happen when Dad died in 2001 after a long illness and hospitalization, when both brothers dealt w/colon cancer, and most recently with our mom’s multiple falls and now Dick’s terminal cancer. Each time I’m the one with the “good head” while the “good hearted” ones suck out the energy with old fights and hurt feelings.
The good news for my own family is that my husband’s non-Hodgkin lymphoma is still in remission after one year! We’re both realistic that recurrence is always a lurking possibility especially after reading about Kath-e’s experience and finding out a young man who was in chemo with my husband last year is now back in the hospital for a bone marrow transplant.
The “real” cancer seems to be the inability of my family to come to terms or least call a truce long enough to help Dick. I can’t wait to start the conversation with someone from palliative care.
Chibi
Kath-e,I enjoyed and appreciated several of your thoughts to me in your recent e-mail. Such as \”…keeping your sanity to give your courage a chance to grow…\” But more importantly, your cautionary note that \”…just remember you can\’t let go…you are needed now.\”
Dick called me up unexpectedly this afternoon asking me to meet him at a nearby coffee shop and to drive him home. He was having someone drop him off and needed a ride home. When I got there he was on his cell phone, talking to his eye doctor, and frantically pulling on his eyelid. As soon as he saw me, he asked that I look to see if he\’d lost a contact lens. Then my daughter called me up asking where her uncle was, that he was supposed to be at a meeting with her in 15 minutes. This was a mtg. that he\’s president of and he\’s the one who called the mtg!
I ended up driving him and later picking him up. He invited me to dinner and we shared a plate. He engaged the hostess in mundane conversation, then the waitress, and then the manager, and 2 tables of guests, none of whom we knew. He talked about his kids and his eye problems. I inquired about his plans for his care as his symptoms worsen. He vacilated from one topic to the next. He became angry talking about our brother, then our sister, his son and his ex-wife.
He became sad when he talked about having to put his old dog to sleep since he can\’t/doesn\’t want to take care of it. Then when I took him home, he showed me where the dog lays in the dirt it digs along the house. I told him it\’s because it\’s too hot out (he leaves him unleashed outside). When we went inside his house, I noticed the dog\’s water and food dishes were empty.
His house was a mess with dirty dishes in the sink, trash on the floor and all kinds of paperwork on the table and counters. Even though his 2 college-aged kids are living with him over the summer, they\’re both always out at work or at play. He\’s glad they\’re home for awhile but there\’s no communication.
I\’m telling you this becuz I took your words \”you can\’t let go\” came to mind. I was feeling I can\’t deal with his problems and want to let go but then I realize if I don\’t stick around to help, I don\’t know who will/can.
He\’s selectively hearing that his oncologist mentioned a met patient who lived 6 years and thinks that prognosis applies to him. I guess that gives him hope, albeit false. He also heard that because his liver feels no pain that his symptoms will not be painful, that his symptoms will be short-lived. That logic doesn\’t make sense to me but I can figure out why he\’s thinking that.
I did offer my help to him but honestly, I\’m not sure what I can do. I did finally connect w/a palliative care program at the university hospital where he goes for his treatments. They basically said it\’s up to either him or his oncologist to ask for a referral to their palliative/hospice care program; however, based on our conversation, they said it appears he\’s not ready for hospice.
He looked very tired and pale. His hands look brownish and very wrinkled. He looked old and worn out. I felt sorry for him.
Chibi
Thanks Kath-e! for answering Chibi
Hi Chibi,
Quality of life – and you don’t have to have cancer to seek quality – is about enjoying the little things of life you enjoy, is about surrounding you with the people you love doing the things you love or feel good about when done. Drama should be reserved for a TV that has a switch on/switch off button that you control.
Like you say: time for a truce and help out Dick.
I can only share what happened in our family: hospice doesn’t solve old family probs. Some family members are helpful, some are not, some are draining out energy. You get rid of the latter, meaning you don’t waste your time. Keep it friendly: say you need to run errants for Dick or his children, or yourself and your family, please come back later.
The ones that want to help are the ones you organise the chores with.
The “neutral” ones: sometimes they have no clue of the severity of care-giving, but once you tell them, they could be happy to lend an extra hand. An example: moms very younger sister loves to help out as a volunteer in an old folks home nearby her. So I told her: my parents are also old and they are your family, just that they live further away, so you could easily volunteer there if helping people is what you love to do. And of course, she happily jumped in to help a hand, and learned how much help was needed.
Every helping hand is a good hand, even a listening ear sometimes does miracles in letting the steam off and get ready for the next round.
Like father’s GP said: all the help you can get is great, but at the end of the day it will be the close family that’s going to do the most of the hard work.
All the drama from siding with Dick’s ex, lazy son, playful daughter… that’s great for TV but you don’t need extra excitement. It’s now about getting people on board of the good cause and whoever wants to row in the wrong direction, you kick them out of the boat. Sounds bad? Nothing is more bad than wasting energy around people that don’t have the luxury of having time to waste.
Palliative care can’t solve family relations, but they have the expertise to help you coping with the situation much better than when you have to figure things out for yourself. Every helping hand is a good hand, every listening ear is a good ear.
Hugs and God bless,
Kim
Hi again Chibi,
I am sure Kath-e will jump in as well, so let me share father’s story.
Liver doesn’t cause pain. The pain only starts when the cancer is growing and needs extra space in the abdomen, hence pushing all other organs out of the way. Painkillers is a solution but you need to know: when you have a headache: you take painkillers and few hours later the pain is gone. However, the cancer is constantly pushing the organs away and you constantly need painkillers, more and more when the cancer grows. In father’s case we could see the growth pushing his belly outwards, so when you see that, you can only imagine how painful that must be.
“False” hope: unlike Kath-e who is in full acceptance, I feel it’s a very thin line that doctors are walking: as soon as a doctor says: you only have 6 months to live, lots of patients just get struck so hard by the verdict that the fight is off. I mean: father felt bad before being diagnosed, but showed his best effort, hoping that tomorrow would be a better day. From the moment he was diagnosed with incurable cancer, ‘the best effort’ was wiped out big time. The disease didn’t change, the perception of dealing with it had a very negative effect on father.
I think the problem is that palliative care should be the ones that bring the bad news to the patient, and not the oncologist. Because with all respect: oncologists are not trained to deal with the psychology of the patient. Palliative care has a very different approach to a person.
Anyways, I have no answer to who should say/do what and when. It’s all about gut feeling and asking the palliative care people for advice.
There is also a rule: once the patient cannot take care of himself, somebody else has to take over. In the case of Dick’s dog, it’s clear that somebody else should be taking care of the dog. It’s up to gut feeling if Dick himself is still in control or should be advised now to be taken care of better. At the end of the day: do you intervene when you find Dick without food nor drinks but lying in his own dirt? I don’t think so.
Is it Chibi that has to provide Dick’s food, drinks and clean up? I don’t think so either. Palliative care has to be more active than sitting back and “waiting for the dog to die”. That’s what i mean when I said before; you have to become aggressive in getting the help that’s obviously needed.
Talking about the dog: the dog should be NOT put to sleep. Not to difficult to clean him up and provide food and drink, there are dog walkers and there are automated food and drink trays. Dogs give love, love reduces stress, love brings extra energy or to say it with Patrick Swayze’s words: “you got to have a dog”.
But is Dick really talking about his dog or was he trying to open the conversation about himself? Some subjects are taboo, but like I said before: there are no real rules and regulations here unless your own humanity.
Dick’s house is a mess, so that’s where normal elderly care or house care or cleaning people come in. No need to wait for palliative care, although palliative care could suggest who does what in Dick’s region.
Also that’s where the 2 kids come in: at least they should clean up after their mess: you can’t outsource basic, domestic living rules.
“I did offer my help to him but honestly, I’m not sure what I can do.”
By being on top of things Chibi, you are already doing a lot.
“They basically said it\’s up to either him or his oncologist to ask for a referral to their palliative/hospice care program; however, based on our conversation, they said it appears he\’s not ready for hospice.”
Hello Palliative Care: who is ready to accept that he cannot be cured, who is going to ask for help when feeling reasonably ok – especially when not having a clue how ugly this disease can be? Anyways: you can use the example of Dick’s dog to draw the picture. 6 months or 6 years, that’s not the point. The point is making preparations now whilst in the mean time still being able to do the things he wants to do.
“He looked very tired and pale. His hands look brownish and very wrinkled. He looked old and worn out.” One of the side effects of a mal functioning liver is dehydration: it shows on the skin: it’s no more flexible but becomes like a dry worn out shoe. Also the feet will swell with water. Again: grooming can be outsourced: we had a hairdresser coming to the house to give another example.
Just sharing Chibi, hugs and God bless,
Kim
Kim, Your description of your father’s end-stage symptoms provided a lot of clarity for me about what to look for and anticipate. Especially hearing about where the dreaded pain I’d been reading about, comes from. Mom said that when she was giving him a massage about 2 weeks ago, she noticed something unusual “protruding” from his side as he lay on her couch. I told her what I knew then about how the liver as it enlarges pushes the other organs around which causes the stomach to get squeezed (loss of appetite) and other discomfort.
Your description of his skin resembling worn out shoe leather was on point, because that’s what I was thinking. We are Asian and Dick is not the outdoorsy type so he’s relatively lighter in complexion but not only is his face and bald head a creamy-yellowish color, his hands reminded me of a mummy’s: brownish, dried-out and very wrinkled, like leathery paper and like an old African-American’s hands.
I’m learning. I’m observing. I’m trying to open up. When he called me for the ride yesterday with little explanation, I immediately ran over to get him wondering why he wasn’t driving (he couldn’t see because of his blurry eyes? he wasn’t feeling well enough?). Especially when I saw him pulling around his eyelids and asking me to look. When I felt around his eyes, I was taken aback that his eyeball seemed so swollen against his eyelid and in his eye socket (I’m more atuned to the eye because of my mom’s recent fractured eye). It was difficult trying to pull up his eyelid.
Over dinner, he talked further about his experience with his vision problems and how he was going from one opthalamologist to another, 3 altogether, I think. He didn’t like one office because of the sales person, the other because of the receptionist and so he shows up without an appt. to the first one demanding he get his eyes dialated since he’s convinced it clears up his blurriness! We had a patient waitress who bent over backwards to accommodate his demands, which were trivial but many; in the end, he was beaming that we got free desserts and he began regaling us with stories about his runs-in with bad restaurants and poor service. Our mom has a small retail shop that’s been declining since even before Dad passed away 10 yrs. ago and he said how he understood the importance of treating your customers well. Or how, as a local politician he got all these freebie trips, meals, etc. Then as he talked he grew angry about his kids and his ex, etc. When I tried to ask about who was going to handle his affairs, he griped that one of his best friends (he had 2) has been distancing himself ever since Dick lost re-election, what an ingrate he is, etc. I gently tried to get him back on track and changed the subject to this trip which he’s obviously looking forward to.
More drama, TV soap. Anger towards his son. He saw a group of baseball players and started up a conversation w/them. After the usual sports chat, he visibly outstayed his time and the players tried to resume their dinner obviously surprised at his appearance and his over-friendliness. On the way out the door, the hostess recognized him (he’s been a frequent patron) and he stopped her to compliment our waitress for about 10 minutes. Lonely. Looking for recognition and a friendly face. He takes and has taken comfort in the presence of strangers. Superficial. He lamented missing the free business trips that he took his family on for family vacations. He wished our siblings were closer and had more children like so-and-so family who took these vacations together…
I listened. I said I understood. I hoped his trip with his kids went well but it’s a nightmare waiting to happen with his planning, his stubborness, lack of communication, his health.
As for his dog, I’m a dog-lover and know dogs are comfort creatures, usually. The dog is 11-12, has cataracts and is very anti-social. Dick has always mistreated it even before his illness and even when he was married. He keeps it in the house while he’s gone during the day or night, maybe 10-12 hours. It defecates and urinates in the basement. It runs away and sometimes into other people’s houses; there have been complaints to the humane society. When it doesn’t come back home, he’ll give up looking for him and “tell him” he has to stay outside, hot or cold (we live in Nebraska so we have extremes), and throw his dog bed out on the front step. His wife hated pets and was against him getting it. At night when the kids would come home — this happens even now — they’d see the dog running up the driveway and they’d let him in. The son hates the dog; the daughter feels sorry for it.
Why am I telling you this, Kim? Because I’ve had the same insights about his dog, especially now that Dick’s sick: is he comparing himself to Bishop (dog) and keeping him because he’s feeling empathy for it or sorry for himself, or both? I think so and have tread lightly on the subject of taking it to the humane society (they said it’s too old and sickly and would likely be better off put to sleep rather than languishing in the pound waiting for the inevitable). We also talked about euthanasia being an possible route, something I had to do with my own sick dog. About 2 months ago, he talked some “friends” into taking Bishop because they had the same kind of dog and a “beautiful mansion” and “wonderful family.” After 2 weeks, the friends gave Bishop back because, SURPRISE!, it poops and urinates in the house. Worse, it attacked her dog and bit her hand. Well, the poor guy isn’t used to being around other living things, can’t see well and the house IS its potty; in fact, he doesn’t like to poop outside. Despite this, Dick was convinced this family a cool-down time and said they’d take Bishop back and get him a “personal trainer” (they didn’t, of course). When I asked what his plans are for him now, he said he was going to put his picture up at a church garage sale…
Dick has never been “normal” or rational or responsible. Being terminally ill doesn’t make his life any easier. While our family has always been dysfunctional, his family has become more so. Your suggestions about his keeping a dog, getting it a dog-sitter/walker, or even getting home health aides are excellent, but he’s not open to help or to even discuss this.
I feel I’m up against a closed door for now in trying to get some help. I’m not a contact with his doctor (although I do have some “in” with his oncologist because she’s our other brother’s doc and I helped him thru his treatments). I asked if he’d could put my name down since his son isn’t always available (literally!) and he was non-committal. The palliative care people said his oncologist needs to refer him. His oncologist says “he’s not ready.” Dick isn’t open.
I know it’s a matter of precious time that his door will be forced open, when he’s no longer able to drive or get around by himself. When his kids return to college and he’s alone again in his house. (My husband told me that when his mom was hospitalized for 4 years with leukemia, he was 19 when she finally passed. He’s from Japan and the rural hospital required the family do the tasks we’d consider the role of the nurses, e.g., change bedding, do bathing and feeding. He had to drop out of school activities, forego friends and college, take care of a much younger sisster and work. So my hubby has little empathy for Dick’s kids who “have” to get back to their college lives and friends.)
I can be the helping hand, the listening ear. I’m hearing from you and Kath-e that when the pain comes, it comes. When the toxicity affects the brain, it’ll really muddle his thinking and feelings. His oncologist said that she and Dick are in a “partnership on this journey.” Well, yes, kinda, but only along certain paths. I’m worried about his “reckless driving” along this path but, like our elderly mother, I can’t take her keys away. Her doctor recommended a driver’s test but our other brother who lives w/her “lets” her drive when it’s inconvenient for him. Family interventions don’t work because of other issues getting in the way of a useful discussion.
I love your analogy of the boat about kicking out those who don’t want to row the same way! I have a similar one about the sinking boat filling up with water. While some are throwing out water over the side with buckets, others are rowing. But some person(s) is jumping up and down yelling that the boat is sinking, obviously not actively helping. Additionally, there isn’t a leader, one who can lead the way or coordinate the activities so the boat veers and circles and fills with water. Everyone’s trying to grab the lead or push someone out. I feel like jumping out myself…and I don’t swim!! Just joking, of course, but that’s the helpless feeling I have.
But I do want to put Dick on a life raft so that he doesn’t have to struggle too much. I don’t want him to be like or feel like a castaway, but he’s so bitter and resentful from such a long time ago. He’s grasping onto others for his comfort and companionship and struggling with his family. I know that he can gather or contact all these people around him for comfort but they are not the ones who will be washing his body, changing his bed, holding his end. I can picture my mom, my siblings, Dick’s kids and me arguing over him just like when Dad was dying. I’m sure Dick dreads that scene as well as it left the family even more bitterly divided. Äs you so succintly put it: nothing’s worse than “wasting energy around people that don’t have the luxury of having time to waste.”
As his dog suffers, Dick is suffering. Misery loves company but he’s unable to take care of it and I’m in no position to offer as it breaks my heart to see it in that situation. My daughter wants to call up the humane society or offer to take it to the vet’s. I just called up the vet to get some basic information about putting his dog to sleep. They said it’s overdue for its rabies shot, something he often neglects.
He mentioned leaving legacies, trying to create a family for his kids with the distant relatives (note he didn’t say anything about our immediate family), showing his kids the places and people of his childhood, a daunting task given he’s trying to accomplish this all in his final chapter. Ïronically, one of his e-mail addresses is “too-little-too-late.”
Chibi
Hi Chibi,
Thanks for sharing. A few short thoughts:
If Dick talks about legacy and he is Asian, then his son should take over in true Asian tradition, just like your hubby did.
Then there is the western idea that you can only help a person when he asks for it. Making it easy for palliative care to sit back and do nothing.
Maybe Kath-e can shed a light why Dick just doesn’t want any help. My father was the type of not wanting to bother anybody, not mentioning any problems, but when help was presented, he appreciated it.
You should know if Dick is that type or he is just not willing to take matters in his own hands, waiting for somebody else to clean up any mess. Or he is just trying to live the live he used to live as long as possible without facing what is going to happen (denial as Kath-e calls it).
You should ask Dick’s oncologist how she sees her “partnership on this journey”: this sounds like a very strong commitment to me, unlike what father’s oncologist had to offer. Father’s colon doctor said: “your father is dying, easy for me to say that, sitting behind my desk in the comfort of my 4 white walls, but you guys will have a hard task ahead.” A crude but to the point statement, so better ask Dick’s oncologist what she actually means and how she sees her partnership during the journey.
Hugs and may your God be with you.
Hi, Kim,
Dick and I are 3rd-generation Japanese-American so unfortunately, his idea of legacies and taking care of family are long on ideals and short on reality! My hubby’s from Japan and, ironically, his ex-wife is also native Japanese. Because our elderly mom (and dad) were robust until their late 80s, Dick and we never had to worry about taking care of our parents. Dick has been dependent on our folks for a lot over the years and actually feels quite entitled.
Yes, yes, and yes: he doesn’t want help; he’s waiting (hoping) for somebody else to clean up any mess; he is just trying to live the live he used to live as long as possible without facing what is going to happen.
Regarding his oncologist’s statement of partnership, I thought how generous it was of her to make that pronouncement but given what I’ve seen so far with Dick and before with our other brother, I wonder how deep she means. I’d rather have a blunt message than a white-washed one.
The fruits of my efforts so far are that his daughter’s trying to help out and understand more about her dad’s situation and what she can do. I’m encouraging her to try to talk with her brother (they’re not close) more since they’re in this together whether Larry likes it or not. I think he’s in big-time denial because he knows his dad’s expecting a lot from him that he doesn’t want to do. Shirking (or shrinking from) responsibility! Join the real world, kid.
We are all dying, but his end is nearer. Like Kath-e said, it feels like all 4 walls are closing in and she was kind enough to say this feeling is for the caregiver as much as it is for the cancer person.
I’ll stop blathering on so much for now and will update when there is an update!!
Chibi
Hi Chibi,
Any update is an update
Even a short one like this 
Do ask the oncologist what she really means. Being blunt is no longer necessary here, but if she really can offer more than “just adminestring chemo”, she should tell you what extra she can bring.
I do remember father’s liver specialist saying: “we are on the right track” when they were diagnosing the problem. I mean: that sounded extremely hopeful but just meant that she was following procedure until a liver biopsy would tell the exact problem. Good communication is an asset in this situation, and that means with everybody involved.
Could this be a “japanese cultural thing”: Dick not wanting to accept any help because he feels there is no way “he can pay you back”?
Main thing is to get Dick’s 2 children involved: it’s a hard and fast way to grow up, but if they can get through the short-term hard life ahead, then they know they can get anywhere.
Thing is that the road ahead is unclear for those that never walked it. So if you can tell them what is going to happen, they will be prepared. Other than that, you can’t force anybody to help or to accept help (but you can force in a gentle way father’s GP replied!).
Hugs and God bless.
Kim
Hi again Chibi,
Only now found your comment of June 15. Just FYI, I am the youngest as well, which like you makes me hesitate to jump in until it’s clear nobody else is jumping in.
You can always ‘gently advice’ the older ones until “as if they came up with a good idea themselves” and as such get the ball rolling, giving them the credit for the genius idea
Hugs,
Kim
kath-e …here again…just for a moment but ill be back…just taking a breather…but…dick how is he doing…well i just came across this as i havent been feeling to well…less energy day by day…so im a little behind the times right now with all your situations but ill catch up …you will see…
about dick…you just need to do this….you all need to come together right now…you can say well when hes ready he will ask …or hes to proud to ask and so on and on and on…well its time to stop the insanity and the time is NOW!….you need to all realize there may not be a later.,..time is one thing we dont have…and ya know im going to tell you all i believe that hes mortified with the entire situation…its a fire that will never go out…its going to burn and burn and burn…hes thinking of so many things right now…oh my god how i know so truly….hes probably confused and hurt …feeling less than a person…dick is probably trying to put things in perspective in his mind…i know with me…hmm…when i think about it all i remember since day one so clearly…the thoughts that raged through my mind…i pushed everyone away at one point…yes i did…just the thought of my not being able to do things for myself anymore…sigh…feeling like ill go without before i ask anyone for anything…its funny my apt is one block from the price chopper and so is the pharmacy…so i thought well this isnt to bad as long as i can get there ill be ok…well that was then…3 months ago…i cant walk anywhere except in or out of a car for a drs appt…now what do i do i thought…im alone and single and have one son who is in such denial…but that is a nightmare in itself…bec im weaker now and now is the time for him to really be there for me emotionally….but that wont happen ive realized that hes so hurt over my dying he feels powerless over inability to help me…bec all he can do is sit back and watch and wait…as i deteriorate day after day….buts whats worse for me is the fact that i have to sit and watch my sons heart break…day after day after day….im now on ms contin for continuous pain relief with oral morphine for breakthrough pain…i cant take the drama of life anymore…bec its to short…and now….im coming to the end of the 3 months on a 3-6 month prognosis…
wow…just like that 3 months is gone!!! sigh….the pain is very intense and it wasnt that long ago and i was thinking oh i wonder when the pain sets in …huh….and now my feet are so swelled with fluid and they hurt and are very tight and its now above my knees and there is a leak of fluid in the lining between the liver and the abdomen…i ws informed friday that my non hodgkins lymphoma which is cancer of the lymphatic system (primary) now in the liver..and they now believe that the lymph vessels arent working as they should bec the liver cant filter either…i was then informed its something thats not going away…and not only that the pain meds arent working and now my liver is so swollen i cant sit at all for any length of time bec it protrudes out so far but its also growing inside as well so whats happend is that the liver is extending out of the rib cage coverage area……and now my vision has begun to become blurry quite occasionally…i said to my son just today…could you pls bring over my great granddaughter to see me…before i cant see her anymore….and then can i see her again before i forget who she is ….what………….did i astound you…im not in denial and i thank god for that…however lets get real about this…you will lose your mind or go into a coma…and then you die!
my son said ok mom…ill bring her over to see you…nothing ws said…and just today he wanted to pick me up a sub…i told him no thanks im not hungry…and then when he stopped over he sai …mother you cant be taking morphine like this and not eating…your on a mission to kill youself…sigh…hmmm….i tried to explain about my mets liver cancer so many times but he just wont let it be that way…see what hes doing to me,,,,by being in denial as he is….hes taking time from me from us…tears…from my grandchildren and great grandchildren…when this is it …make no mistake about it….
get your butts out of denial…please dont let dick wait one more minute without you making that phone call…bec im telling you honey right here and now…not just for him but for you as well…you need to pick up that phone and call your community hospice…this is imperative…you will be so glad that you did….you will now begin to give him life …once that call is made…all they want is to give him the best quality life possible…and they are so good at what they do as this is a specialty to them…they are all for bringing families together…they provide grieving services they want dick to enjoy his every day!! not one day a week …every day a week…they will do everything to address all issues and answer all questions and be honest about it all…no punches barred…grant it they are short handed and it would be nice to get more from them but what they give is quality and that is what dicks deserves…
dick is at the end of his life… no matter who wants to be in denial or not…facts are facts….
when you wake up from that …call the community hospice its a start and its not for you…its for dick…not the others…this is the only thing that will give that man a life at this time ,,,so pls reach inside your heart and just make the call and tell them there is someone that needs their services of hospice immediately and they will set up an appt to go there…just be sure to have your medical id cards…and that is it…the end…hospice will take over from here…yup…thats right…take right over and you will finally be able to sit down and take that deep breath and you can cry from happiness and joy bec you have breathed life into hiim and he will at least now be able to die with dignity…its bec of them im still alive with as much quality as posible! thank you hospice…your the best!
ya know im gonna tell ya …you all can no longer enable dick…that is right!!!!! your party is over…bec the only thing you all have is time…however time is what dick doesnt have…
and this way dick will know that you did the best thing a person could do…this death is so horrifying…painful…sickening…degrading…senseless..not just for the patient but even more so for the family and caregivers…so this is why the call just has to be made…then they become very important to you as a friend…and as family and that is how they make you feel…
but as i see my mets its just like they said…that cancer primary has to be treated first however my primary being a blood cancer….probably didnt help to much bec the blood and lymph nodes are everywhere just as my cancer and thats why im not treatable although many people are and with the great progress they are making daily one day soon very soon…
now pls know that when hospice comes to see you just talk to them and be open and honest bec that is the only way that they can help you…when they came to me on my first visit i cried through amost 3/4 of the visit…but it ws ok yes it was good because so much knowledge was gained….
they will work out a plan for dick such as the amount of days the nurse will stop over to see you and assess your your overall…you are able to reach them 24-7 and with no probem…for any reason….and when it gets to the point when dick begins to deteriorate with his disease there may be other options for him such as help from home health aides to tidy the house and do dishes…run errands….do laundry…and every little bit helps….and its all with a smile…and then what…just like cancer…wait and watch…if his condition deteriorates to the point where he will find himself needing bed pads under him when he sleeps as he may not be able to hold bodily functions….and he will be eating less and less day by day…but i told them when i get to the point when another human has to wipe me bec i peed on myself well its now time for the nursing home bec now i cant live this way….although it will be your choice on what you want and they will be asking….also now all you have to worry about is if the mind goes unless your fortunate enough like me and ill just skip the mind part…ill take the coma…thankyou
well now i know i said alot …sorry…i had and have so many things to say and nows the only time bec i dont know if ill have tomorrow…yes that s right tomorrow
tomororw is when your going to call hospice and say you need an evaluation and give them dicks name and such and thats your job!
no more enabling…. bec as you continue to do this you are wasting such precious time that you could be spending together instead of becoming further apart…however…stop enabling and make the call to hospice and get him an appt for asap….
bec this is the only way it will happen so right now the choice is yours call and give him life or dont call and never forgive yourself for as long as you live…dont worry about dick…he will accept this fine bec they will make him feel that he is the most important person in the world!
how many people that have to face this decision about not enabling a patient…i know,,,,,,
well dick isnt going to be one of them anymore…im speaking for him as we are both facing death to the same disease …and to be told that leaves a person scared beyond reality…again aftaid of the unknown..
well from this day forward im praying for the lord to hear my pleas to give her the strentgth to call hospice…you dont need a referral bec they can also use your primary to say what the prognosis is and that he s aware hospice will be called…that can organize everything that comes your way…and oh what a relief that is …was…and can be!
once dick opens his eyes and comes out of denial he will be so greatful of you…and to you! and please know that hospice is on your side they do care about you to…pls know that…and they will care about dick and make him see that its ok they will be their and he doesnt have to be afraid…they will give him the security that he needs to feel like a person again….if his pain isnt under control they are there to help with that as well…as anything else that could come up….so please on behalf of dick please call hospice bec you would be giving him the most important thing in his life right now besides you…dont wait…time is of the essence…there are no terms or guarantees with that ugly ferocious demonic disease called mets liver cancer…you have to do this now while dick still has his faculties about him please do it now while he will understand…please call right now bec then and only then will you be able to regain some of your life back…im the patient but i do know what the caregivers do and the families of course that goes without saying…except my family of course….they are careing and loving not to mention supporting and giving and giving and giving…time energy effort money love but that can only come about once you make that call…if i can help you in anyway…you had better let me know!!!
ok ok ok…sorry i took up your whole day…but it was worth my whole day as long as hospice gets called for dick…hes not able to make the call himself and for whatever the reason it does not matter…bec it seems that your the only person that can do this so what are ;you waiting for …go go go!!
today is the first day of the rest of your life…let tomorrow be the first day of dicks life bec of you!
on behalf of dick and any and all patients and caregivers or family members or friends thank you all for your patience and love …and understanding!
please dont give up or wste any time bec its time…that we dont have!
kim …kath-e here again…about a couple of thoughts i have…regarding a comment posted on 6/22…i just cant get this through my head…your still enabling dick and i dont understand it…is it you that s in denial or is it dick…now i have to wonder…hes unstable not to mention your still enabling him and refuse to take away the keys just like with your mother…why do you enable people and allow for them to make decisions which are in poor choice…how can you do that!!!
and the leathery skin well i can sure identify with that as my skin is so wrinkled just like leather…its digusting to say the least…i hve a question for you…you say your learning and coping and trying to open up …hmm…well it seems to me that opening up is not your problem…its the enabling that you do that is going to allow someone that your trying to protect…the ability to not only kill themselves but perhaps others who may be in the wrong place at the wrong time…wow…im sorry but i cannot justify your behavior..you continuously enable time after time after time…oh now you cant take the dog and to the humane society he will go…but no lets enable some more…dick obviously cant take the dog or care of it and obviously neither can you by your attitude so what now…just let the poor dog be old and in discomfort laying next to dick why …so he dont have to suffer alone…is that it…how can you not only sit back and watch an individual who needs hospice someone to make a phone call on his behalf …again it just seems to be so plain…right out in the open…all you do is complain and complain and complain…are you suffering from any type of mental health issues bec it sure does seem like you are …and of course you will probably do nothing about it just like with dick ..do nothing….wowow your a chronic enabler…who seems to want to justify her actions but just cant….and then to do nothing but put dick down and let him handle his own issues when the time comes…however …all this writing you have been doing is all to no avail as far as im concerned…bec its you…yes you who enables dick by doing nothing knowing one day he will wake up not knowing his own self let alone anyone else…hmmm…you remind me of my oncologist…ok now lets wait and watch…yup…and now after waiting and watching doing nothing just waiting and watching you know like your doing with dick…. waiting and watching…till he makes a move only then and then only…will you then realize that this isnt about you not at all…however even though its about dick with all the time you have wasted enabling …putting him down…not understanding…im sorry but you make me sick…
and then to have the audacity to bring to the light of the world that hes tken on another e mail…too little-too late…well you will be hearing them words till the day you die they will haunt you and with all due respect that is the least he can do for you after the way you humiliated him to the utmost…never a kind word…huh….everything you say is well i was gonna or my daughter was going to or whatever….ya know after this ive lost so much respect for you and im so mad at myself for not seeing through you…you are the kind of person that needs to be patted on the back constantly and continuously be told how wonderful you are and why and for what…you dont deserve it…not at all…why may i ask are you even on this site..this is for mets liver patients and their families and caregivers…and just plain people that happen to care and be interested….
you are not one of those people…im sorry but come out of denial and just try to look at yourself in the mirror…just try…and when you cant see the person in the mirror you will understand why…its bec of your selfish uncaring ways and the way that you do and say what you do…there is no jusification for your behavior or any of this mama drama stuff…get with it…im sure that you will find a site out there perhaps for mental health or mental illness so then you can learn why the justification for your behavior and mannerisms are not excetable by any means at all…and im sure if anyone can go bck and read some of the nonsense and despicable things you said about dick…and that is tottally unacceptable to me the mets liver cancer patient…and im sure its unacceptable to alot of people on this site both caregivers families friends and other enablers just as yourself who dont know any better…
the problem is dick is extremely sick with an incurable horrfying disease of this mets liver cancer…and i totally understand what this is like but you have no conception …and that is so so sad! and you know its funny but i called hospice myself and was told that a referral is not needed they got verbal by phone and then went to the drs office and had him sign a paper that gave me 3-6 months…so ya see thats bec they dont want people like dick falling through the cracks …however you showed no determination at all or had any remorse for what dick has been through…what hes going through…or the hell that he is now facing…
finally …may i add that anyone who comes to this site to complain about the patient and all of their wrongdoings pls…take it home cuz its not welcome here….this is where we all are trying to get comfort for the unknown….understanding is trying to be gained…and strength for all….the caregivers… friends …patients and families …this site is for us to share and learn and seek any knowledge that we can…and all of that will help us with insight all to be focused on the patient first and the caregivers next…
however it just doesnt seem like you fit in any of these categories….so sorry…so maybe you will find a new home where you wont do the damage that you have done here…
if any one out there feels that im wrong …im sorry for your insight to all of this…and i can surely see how you became that way…wwowowowo…she really had a way with words didnt she…poor dick…his life to soon end …he who is so confused about this darn disease,,,still doesnt understand his hell hasnt even begun yet and yet this woman will only put him down and find fault with all that he does or says…
to all of you that feel insulted and taken in by her ….im sorry for the emotional pain she has caused you also…this goes to the patients and their families friends and other caregivers….it is all of you and all that you do for the patients that make their short time left as much quality as possible i want to thank all of you for what you do bec sometime a thank you may go unsaid even though it was truly meant…it takes a very special person to carry this disease and caregive for this disease as it is the most humiliating debilitating painful and devastating confusing way to die…but that is the painful truth!!
too bad you didnt give dick his chance when there may have been a chance for him to have a slight quality of life however its all been taken from him by time…yes time…something he never had just as i and you and the others!
yes now its to late and you have to live with this the rest of your life…if you can that is…
Thanks Kath-e for sharing, Hi Chibi,
I am not going to play referee here, because Kath-e is at this moment our only contributing member in hospice, hence her experience is first hand, Chibi like me is further away from the disease as we are on the care giving end.
Do know that emotions will go up in your own family, much higher than what you can feel from Kath-e’s comment.
Like Kath-e says: there are 2 options:
-doing nothing
-doing something
And this dual question will pop up more than once during Dick’s future: do we act or do we sit back and do nothing. (and even when you act, you need to ask yourself: what are we going to do?)
I would follow Kath-e’s advice to contact hospice and get their expertise. They can still decide with the oncologist how and when to proceed, and again the question will be: do we act now or do we sit back and wait.
Please Kath-e and Chibi, don’t take your different opinions personal: it is clearly the dilemma between:
- taking action or sitting back.
Or like Kath-e says: “when do we take the key out of Dick’s hands?” The dilemma question where again hospice expertise can help you out best.
Just that Kath-e shows her passion, and that’s what will happen: you need lots of passion and energy to get things going and keep them going in the right direction, you need all the helping hands you can.
Since Kath-e and Chibi seem to live both in the US and when laws are the same all over the US, then there is reason to contact hospice now.
Like I said before: when taking care of a loved one, one has to do the right thing and forget about laws and protocols, so do get on the phone and contact hospice to advice you how to best take care of Dick, or how to take best care of “one of your close family members” if you think hospice shouldn’t know Dick’s name.
As you can see Chibi and most likely already know from your previous experiences with your family: the road ahead is not going to be easy and emotions will rise up enormously high.
Normally in “a statistically typical family” the logical way is the closest relatives will do the most of the care giving. Again hospice can help you out how in each family things can be dealt with best. Hospice can solve lots of questions and problems better, giving more time to get involved.
The road ahead is a hard one and we are here to share our personal experiences and emotions. Please keep sharing.
Lots of love and hugs for you both Kath-e and Chibi,
Kim
Kath-e,
Your comments were well-taken. I AM being selfish about taking the initiative with Dick, but believe me, it’s not for lack of my trying. I did contact the Humane Society here and was told the OWNER has to release the dog unless it was a runaway. I did contact our vet’s office and was told the OWNER has to give permission to euthanize his dog. I did contact the hospital’s hospice and palliative care program to see what could be done to get him this care and was told his ONCOLOGIST has to make the referral. I am NOT on his list of authorized contacts (just his estranged son and our 93-yr-old mother) and therefore cannot discuss his case with his oncologist, even though I’ve been to a couple of appts. with him. OK, I get what you’re saying about certain protocols or laws that can be overcome and I need to be more assertive and ramp up my efforts IF I really want to help him.
I asked Dick last week to add me as an emergency contact; he said he was thinking about it. I asked if I could get information for hospice/palliative care for when the time might come. He told me that he “didn’t want to spend $ on these programs” and that his doctor said he wasn’t ready for the care yet.
Right now his son and daughter are living with him for a couple of months and they cannot get him to discuss his situation. He sometimes have them drive him around but mostly he drives himself. How am I supposed to take away his keys or my mother’s keys if they insist on driving and their doctors (primary care, eye doctor and oncologist) say it’s still OK to drive? What authority or influence or expertise do I have other than to say they shouldn’t be driving? Am I just being over-cautious or just trying to take away their independence (their view)?
I do appreciate your heartfelt comments about the purpose of this website. Granted, I am not the mets patient but I am a “caregiver” in the loosest sense of the word and I am finding the information posted by you and Kim and others to be very helpful and supportive especially this very harsh one. I’ve read all your postings and have only an inkling of how hard it’s been for you and must be or will be for Dick. I understand your concerns that I am not being as helpful as I should be but each person’s situation is unique and it is difficult to totally appreciate what someone else is going through. Believe it or not, it IS hard for caregivers to give care to someone who is in denial and rejects help.
Your candid words rang some big bells for me, though. For example, despite my running into some roadblocks with my efforts to help out or get information for Dick (since he’s obviously still resisting efforts for help), I will contact his oncologist again to plead his case to her and ask that she make the referral to palliative/hospice care or at least convince him to accept my help. As Kim as pointed out, even if Dick isn’t “quite ready”, he, his kids and family could benefit from the support.
Kath-e, I hear and feel what you’re saying to me. I apologize that my postings have been upsetting to you. It was certainly not my intent to be offensive. Please understand that I am hurting as well albeit in a different way than Dick is. I do feel that caregivers also have a hard task trying to empathize and offer support to the one who is suffering the pain and horrors of the disease, as you so aptly put it. Even though my attempts up til now appear half-baked or inadequate, I am trying in my own way. I imagine your son may possibly be struggling how to reach out to help, not knowing what is the “right” way versus the “wrong” way, not wanting to upset you or upset himself. My niece has been admirably stepping up to help out her dad just within the past 3 weeks while her older brother is avoiding the situation. When I last talked with him, he says he doesn’t know what to do or how to help and his dad’s always “mad” at him so he doesn’t want to help. Plus his sister is taking on a lot of the tasks which makes it easier for him to do nothing. A vicious circle.
FYI, they left on their 10-day road trip this morning. Dick saw his doctor yesterday who expressed concerns about the strenuous trip but nonetheless gave his approval for him to go. So did his opthamalogist and oncologist. It’s his attempt to create a legacy or lasting memory for his kids despite the risks along the way. Is it wrong for me to not stop him? Even Mom tried to stop him and the kids have pleaded with him to at least take a plane. He’s been so looking foward to this trip and declined offers of rental cars, airplane tickets and anyone else to accompany them. I’m sure he’ll be exhausted when he gets back.
I am not asking for sympathy or pity nor do I want to be “barred” from accessing this site. I will attempt to temper my postings where possible. I wish you and your family well.
Chibi
Hi Chibi,
Thanks for replying Kath-e’s comments.
“Quality of Life” is what doctors and hospice will tell you ‘what it is all about now’ for Dick.
Now ask them what quality of life is, and some won’t know: so here you have somebody telling you what to do but not knowing themselves what that means…
Some like Kath-e will say: “hospice is the answer”, and as you can see, it works well for Kath-e. Again I repeat: I am happy for all helping hands that helped taking care of father in whatever way.
Now for the tricky part: “western culture” is so focused on the individual that legally you as a sister are unable to do anything: “cannot take care of the dog”, “cannot refer to hospice”… There you are: ready to help but thrown some walls between you and Dick. Compare this with how your husband in Japan HAD to help out, and you see the weakness of “western culture”.
Now I can hear Kath-e thinking: “Kim, western culture: that’s another excuse not to take action”. And that’s where I will tell you my experience:
Father’s paid healthcare had a social worker whose written task I read on paper is to organise and coordinate all help needed in more complicated medical problems. So I called him up and his answer was: “I gave your mother some phone numbers to call because she is ‘emancipated’ enough to call herself, so my job is done here.”
So I asked him: “if calling is so easy, why don’t you call”?
His answer: our healthcare follows the “emancipatory strategy” where we will only interfere when the patient really needs us.
Blablabla summarized: “I am not going to help you guys although I should as that what you imagine you have been paying healthcare for”
That’s a big wall to hit as the paper you read tells you that this is the right and ideal person to help. But according to him, he has done his job. I have the feeling Chibi you are at this point of your experience: asked around and got some walls thrown at you.
In our case, we started calling around as much people as we could to hear many times: “what? your social worker says that?, really?”…
Bottom line is: we bypassed that social worker and got the help we needed. It’s here where I say: “you have to get aggressive in order to get things done and don’t get too much stuck on laws and regulations. When you care, you dare
”
Ok, back to “quality of life”: do you take away the keys when all Dick wants is to drive an enormous journey? Did we take away father’s chocolates? First we thought that we needed to give him a healthy diet so his liver could cope. And we all know how bad chocolates are for your liver. But what “quality of life” do you have when you get deprived from something you love? Especially when your appetite is fading?
So that’s a little question about chocolates, and many more questions like that will follow about other ‘little things of life’. Just like the question about the keys: in my opinion: if Dick wants to drive and the doctors give an OK, then drive it will be, cautious of course that the kids are plan B when Dick’s driving is not up to standard. Always have a plan B, and when you don’t have one, make one up on the spot as fast as possible with all the energy, knowledge and helpers you have.
The next question is: what when Dick comes back?
Another question: Dick really doesn’t want to spend money on hospice? A new wall? Ok, then you spend it. “Bang”: question answered or excuse wiped of the table.
“Bang”: as soon as your niece says: “this dog is mine, I keep it at my father’s place and that’s obviously not working”, then who is going to complain? I am not in favour of killing dogs, but I am equally not in favor of letting animals and people sit in their misery.
Above, I just wanted to give an example that there are ways to deal with what I call “walls thrown in front of you”.
Bottom line: one question after the other needs to be solved, and most likely each question will be the first time you ever came across it.
If people/Dick are finding excuses, then you have to curb the excuses in order to find out if there is a deeper problem or not, “Bang” answers is one method, but again, hospice is much more experienced and should be advising you. We always tried to find and execute “a good plan”. “That’s a good plan” is a sentence we started to use a lot…
Why can Dick’s daugther help and his son not? Your Asian heritage will tell you that nagging and pushing people to do something is also a way of showing your love and care. You don’t need to ask, you do. You will then see how much or how little of what you are doing will be appreciated. If you really notice that you are of no help, then at least you tried all you could. You know Dick long enough to know what he wants and what not, without having to ask him.
Asking my father what I could do for him, his first word was: “nothing”. Now we all know that doing nothing is not an option here, although my oldest brother kept to his point of view: “if father doesn’t ask for help, I cannot give it”. You can imagine how many heated discussions we had, well, imagine again: only a few because we all knew we didn’t have time nor energy to debate. At the end of the day I love my brother and he just iterates what you have been hearing: it’s up to the OWNER, the ONCOLOGIST to start to take action and ask us to help. My brother can live with that knowledge, I couldn’t so I acted in ways I found best. It helped to see a smile on father’s face once in a while, because when we would have done nothing, those smiles wouldn’t have come.
On another note: I do agree when my brother said: “you can only help others when you can help yourself”. Meaning that you need to have enough energy and strength to run your own life. Because if the caregiver runs out of energy, that’s a disaster in the whole “help-structure”. Do know however that humans have much more energy than they imagine, but at the end of the day, we are humans, not supermen.
Summarized: please keep on sharing your experiences, even if the answers will sound hard. They are hard because nobody has ever told them to you, and what you will hear is so far away from the drama you see on TV about terminal diseases. However, none of the comments on this site are hard when you compare them to the metastatic liver cancer itself and what it does to the patient and the care givers.
Lots of love and hugs,
Kim
ANGER!
On a final note: the most unexpected news from one of the professional care givers was:
‘Do know ANGER is part of the process as well’: both for the patient as for the caregivers. Some will go to a process of emotions, some will just flare up with no pattern.
So when things heat up, do know it’s not just you or the people around you, but it’s heated by the disease.
Hugs and love to all,
Kim
kath-e here….kim i do feel that anger in your voice…and im very sorry…
i will pray for and yours!
Hi Kath-e,
Thanks for your prayers! No need to feel sorry for me, nor my anger
Take Uruguay’s example: Uruguayans are saying "NO" to tobacco,
thanks to a new law promoted by a local cancer oncologist who is also Uruguay’s new president.
Only when somebody who knows the problems is in power and makes it a priority, problems can be solved. (Every eight seconds, someone dies from tobacco use.)
The anger keeps my question alive:
Why isn’t the government taking care of it’s own people,
why do we need a website like ours where we have to ask others how to care???
Take the oil spill in the Gulf of Mexico as an example:
Not only does BP create a disaster, they even make it bigger trying to cover up that ‘at least they are doing something’. And governments have no clue either: both to prevent the disaster to happen and now to clean up the mess.
Same goes with cancer: it’s no rocket science that our modern lifestyle creates an incredible poor immune system. And just like governments allow off shore oil drilling, they allow:
Just imagine, we have the term "junk" in the food we eat and we are even loving it…
kath-e here again …finally…eh…hope all …i mean all…are as well as possibly can be…yes first and foremost thank you to our caregivers and families ..friends and survivors…strangers and all cancer patients and those who love those those cancer patients…
chibi…..oh chibi….i just started reading your e mail of most recent…pls allow me to say something i said i would ever say again and that is …im sorry…ive never meant to hurt anyone and i never would…however to be honest with you the only thing keeping me sane throughout this entire bout of non hodgkins lymphoma with mets liver cancer is you and yours and the others all of you are…and i want to thank you all for that…
however in return i owe you all the truth and that is what your going to get from me…and nothing but the truth…that s all ive ever given as much as many of you hated the words i spoke bec they were so true….mortifying…horrible …ugly…and fatal…again…only the truth….
ill be back to you all later with an update on myself…as right now i need to speak to chibi …yes you chibi…i have to go back and reread what youve spoken bec it upset me so…i think you need to call the drs office and tell them your calling for dick and he needs an immedicate appt for an oncoligst and ask him for his fax number and then call the drs office and ask them to pls fax a request for an appt for dick immediately…and then tell them at the same time…that you want the drs office to call hospice at the local hospital so that you can get an immediate appt…please chibi you have to do this whether you want to or not…if you dont and dick dies soon you will never forgive yourself for doing nothing…you cant allow this …
there is another option and that is to call adult protective in the county that you live in and tell thim that dick has been diagnosed with stage 4b with mets liver cancer and hes in desperate help and is not able to get it…..i guarnantee that they will do something immediately….and im sure they wil light a fire under the drs ass so he can get moving…
the sad truth of it all is there is no cure and they cant help dick in that sense…however with the help of hospice that ball will start rolling down the hill like you cant imagine…i dont know what country you live in but this is so sad what s happening here…ok so what there is no cure right now and mabybe some day there wil be but dick at least should not have to suffer over this mentally or physically or emotionally…
dick dam you…you owe it to yourself to die with dignity feeling physically as best you can…you need to give a hospice a start bec they begin from the moment you say hello…there is not a question that they cannot answer…not one from a-z…it felt like a million pounds were lifted from my shoulders ill tell you that much…at least your time left will be as much quality as you allow dick…you…now you can see before you know they will be at your door…you dont have to go and live in a hopspital …nope…stay right at your home they will come and visit you often to make sure no suffering is going on and to see if they can do anything they will want to check the blood pressure and thats about it…if your in pain you may ask for meds and im sure depending on your pain it will be taken care of…you dont have to run out to the drs all the time cuz hospice comes to you….and if you need help at home they can get aides to come in and the local hospital may also get aides to come in to help and also if there is something you like to do they will be more than happy to arrange it….
its an added family….as in family…they are wonderful compassionate people ….so…..so long for now but remember chibi…and all of you others out there god bless…but just remember this may be are last day what…last day to breathe…last day before the toxins set in and confusion becomes a reality….and then the coma…
im in this for three months since my progosis and a brief update…things changed since 3 moinths are im on morephine all day long …funny thing it doesnt get me high..or confused and it doesnt even take away that belly wrenching pain….appetite is barely none…now i weigh 88 pounds down from 105 and i cant sit for a long length of time bec of the liver being swollen and protruding from under the ribs it becomes painful….stay tuned…
chibi…pls for yourself and for his children and for dick pls make that call before its to late…
oh yea one more thing…money is the last thing to worry about when it comes to cancer…between all of the agencies in our wonderful country and hopefully everyones there are people even that volunterr just bec they want to make a differnece in someones life….
so let them someone be dick….let dick have what he deserves and that is the best
please any and all of you out there that are in denial …please pray for that to end…and pray for the strength to help save someones life…especially when it only takes a phone call…oh just fyi hospice loves to see it that the family and friends are able to come together and they will also do what it takes to have that …they are willing to have family meetings for discussions or whatever will help the patient and/or the caregiver!
god bless you all and give you the strength and compassion to do what you need to do! remember this is about dick and dicks life and hospice would love to see you be apart of it…so make those calls now!
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kath-e here and not happily i should say…well in partial answer to you big blah blah blah….you have some serious mental health issues…it doesnt mean your crazy just someone suffering from at least ocd…o c d….look it up not to mention add…just not capable of making a decision even when someones life is at stake…that is poor and pitiful to say the least…
this site is about us mets liver cancer patients and yes all the wonderful care givers and family and most of all thank you for your patience and understanding….however…why you are bringing the war of afghan and iraq into this…is far beyond me…and you know you say why is all this money going to fight this war…
you make me sicker by the day…sicker than my liver mets makes me!
why you say why…so your country has a country …to protect one and to protect all….
soooo…why dont you stick to the site and what its meant for and not what your politcal quips quotes and blogs…
i sense evil coming from you and i wont waste my prayers on you bec your not worth it…
you want to call me a quitter …go ahead….please be my guest…you see you obviously werent listening when i was speaking but thats fine….and as has been said that im the only one on the site in hospice …well its not bec im a quitter oh no..its bec im a realistic person and im not in denial about my disease…i know there are no treatments available to me so ive come to terms with it….as it was do that or lose my mind bec i have no control over my disease….all the fruits and veggies and the special diets and etc etc etc…none of them can help me …i cannot get one extra day of life no matter what i do as its cure or care …so ill be happy to get the care ….and maybe you and yours will be to!
Hi Kath-e,
"Whenever you find yourself on the side of the majority, it is time to pause and to reflect" – MARK TWAIN (United States, writer : 1835-1910)
My message on this site will always be: when you have metastatic liver cancer, you need ALL the help you can get. This is the simple truth. Both for those who want to seek treatment or those who opt for hospice, and especially for those who don’t know what to do.
All the stuff I talked about in my previous comment are all examples that are not contributing to a better immune system nor a healthy lifestyle.
True enough: why talk politics when you can call hospice? Because as you can see with Chibi and me: calling hospice didn’t have the positive result as you got. Like I said before: 1 person that came to visit us after father died was sent from our official regional hospice agency to ask: so your father is sick, how can we help?
That’s why I keep on saying: act as fast as possible to organise ALL the help you can get in an aggressive/assertive way, as not everybody has the luck to find hospice like in your experience Kath-e, or to find treatment like in Jim’s son experience.
To be practical, this is all the help we got:
The professional help we expected but didn’t get:
I am sharing my experience Kath-e and I am happy that my experience is different than yours. I am happy to hear that with 1 phone call you can get all the help you need. I suggest you share your hospice contact / phone number so all of us in need have a clear example about how it can be done right from the first minute. Once there is a good example, only people like you and me can ask law makers/politicians to duplicate that good example in their region of influence.
Thanks for being around and sharing Kath-e, and sorry I am adding to your not feeling well.
Lots of love and hugs,
Kim
kim ….kath-e here…. is this really necessary that you have to write in this language…im sorry but i dont have the time for such nonsense so for whatever msg is trying to get to through…all you others can decipher it oh and did i say have a nice day
ps…wow .you hav a lot of issues…
kim…..kath-e here again…im not talking about what you said im so talking about your punctuation …and you know exactly know what im talking about …you obviously never really appreciated anything that ive had to say and you know what …that is just fine with me…ya got something to say …say it…but dont make a person have to take forever to decipher …thats all kim…you obviously have an O.D.D. and im sorry for you but that is something else you need to put into place as well as everything else…you do have some knowledge although not that of a scientist….im going to back now and read what you just sent me again bec this is certainly not what i was talking about…im talking about the blog with all the doo-dads…you do have a way words some education here i see…some of it however is just a waste of my time…in fact most of it…as it is i without that quality…
kim….kath-e here again…you have sent me so many messages and wasnt feeling a bit down so please allow me to apologize…ya know you really amaze me…i like the way you say oh wow you made one call and got it all wow you and jim <<>>>>
your in orbit somewhere and god knows how the people are that are subjected feel…im glad i dont…
its funny you dont even really know my whole story ..i tried to spare the feelings of many and not write a book …like you however a blog or two might do…
you assume and let everyone know how im turning down chemo and turned to hospice …you have done nothing but put me down since day one since we have come to met …why does my situation help me yours easier on holding on for nothing because nothing can be done…
let me tell you a thing or two missy…first of all i have a blood cancer yes and let me tell you that i had it for 5 years however it went undetected …so by the time that they did it put me in stage 4 b now what thats what i said to just like everyone else…
well what else is there to do …chemo…i cant die …omg…my son…my grandchildren…my great grand daughter and great grandson to be born on 12/30….
so chemo it is…it began immediately and bec it wsa a blood cancer it had to be a very strong cocktail every three weeks for two years…and then it didnt work so then we tried something else for four infusions it didnt take however it took me over three years to get over chemo brain and all the sickness that goes with chemo and a blood cancer….
now i tell you now that cancer is in my liver stage 4 b so again i say now what do i do…oh boy…
problem is you have to treat the primary first and that is a blood cancer and how in the name of god can you receive chemo and then treat the secondary which in my case happens to be the lymphatic system…the blood…bone marrow…and now the liver…now that talk about the immune system…well i dont have one..i do actually but its loaded with cancer…not to mention they said bec the impotent 5 ingredient cocktail that i had forced me to see how much damage to my heart was done by it (the chemo) the test is called a mugascan….but im sure you already knew that kim…and due to the fact that 60 percent of my left ventricle is damaged and no chemo is an option nor any other treatment either….now
in nov 2009 i was told about the liver and again lets do a wait and watch…jan 2010 another scan worse than the one in 2009….again wait and watch…another scan in mar 2010 which is worse than the one in jan 2010.so a liver biopsy was done to this (several names for one thing) it had been referred to as a cyst…lesion…mass..nodular regional mass…so now this past april 2010 is when they told me the cancer is now in my liver…
well let me tell you all what waiting and watchig did for me ok…i found medical reports that dated back to 1999 talking about a cyst…well i remember when i went and talked to my dr about it he told me oh dont worry thats nothing…
just a fatty cyst thats all…everybody has them…wow do they really …just my luck…well kim there were many details i could have left out to spare many feelings as i said but it seems that you are only trying to put on a show here….
me…im only trying to tell the truth and im not in denial…your making the people think that i ran to hospice and im living life….im living at in home hospice…the nurse is here everyday m-f…social worker is here twice weekly and a sponsor for social activites once weekly although im not able at this time to really socialize bec of the way that i look…yes the way i look…sad as it seems when your 58 and you look 80 its hard…but its ok ….they so told me that if i need a houseworker they could gve me one a week…after that ild have to call the county agency and receive a home health aide twice weekly from them….if you are without anything they will do what they can to help you get it…they are having a need for this agency to become larger but until that time other agencies need to speak up….
so kim sorry to disappoint ya but …i tried eating right and drinking right…however in my case nothing i can do will help…can you get that through your fat head…im also finding out and only now that my liver cancer was spread to the liver right after i got my blood cancer…so its been growing all of this time….
kim i hope your happy in succeeding what you have done in degrading me in front of all of these poor helpless people…how dare you….why dont you share and address the desease instead of making it all about you..if one thing i could say could help one person that would elate me…
kim there is help out there for your o.d.d. you really should seek treatment….
and to all the other patients and caregivers out there…im kath-e and im so sorry for all of this nonsnse that this woman hs placed on us all…
much love and prayers!
Hi Kath-e,
Just for the record:
-I say “oh wow” for the way hospice is helping you out.
-I am not assuming you let down chemo.
Like you say, I don’t know the rest of your story, so I invite you to write it all with all the illustrations you want to add.
Sharing your story will help others react in a more helpful way than how you feel I am doing.
Thanks for being around!
Hugs and lots of love,
God Bless,
Kim
This message is for Kim from Chibi: Is it possible that your text is showing up in HTML code and that it appears “foreign” in some browsers? I personally like the special fonts (bulleting, bolding, etc.).
I appreciated reading your blog from 7/6 that listed the caregivers in your father’s case. Obviously overwhelming, the care is “total”, that is, 24×7 and reveals the importance getting a team of folks together to help the mets patient. You listed your mom, your brother, yourself and so forth, in that order. I see a ragtag combination of Dick’s daughter part-time, myself, and a little bit from our mother and less help from our other 3 siblings and Dick’s son.
Besides family, your list included some great suggestions on outside help to do such chores or tasks as cleaning, cooking, shopping, etc.
I must say that Dick seems determined to “go it” alone and takes great pride in “proving” to everyone that he’s capable of living the way HE wants to. Is it denial or quality of life?
I sent his oncologist a note asking for her input on getting support for Dick; however, she’s on vacation for 2 weeks and his case nurse says we need to discuss this with her!
Kim, I remember your comment recalling how you all let your dad eat his beloved chocolates even though they “aren’t good” for him. There’s a lot to be said about letting Dick eat HIS chocolates, too…for now anyway.
Kim, thank you for your inspirational comments. Kath-e, thank you for telling it like it REALLY is, no phoney-baloney, just straight talk.
Chibi
Hi Chibi,
Well possible some browsers won’t show the HTML format well, I better stick to text
Our 24/7 care: looks good on paper, in reality it’s not that you can say: I look after father from 00.00 till 8, the next one takes the 8 to 16.00 shift and the next one continues till midnight.
Mom wanted to be the 24/7 care giver, which is understandable when you have been married more than 50 years. Not long after father passed away, mom had to undergo a ligament operation due to lifting father in and out bed. And she was completely at her end (we needed to give her a sleeping pill so her body could get some energy) the night father passed away. Of course we heard many times already: “why did you guys give me a sleeping pill, just one more night and I could have done it all by myself all the way”.
You have to do what you think is right and what you think you can live with the rest of your life. and is the best solution in your mind knowing what you know at that moment.
Is Dick in denial or not? I would assume that he is kind of like mom: although there is help available, she wanted to do as much as possible herself.
Dick wanted his 4th of July trip, that is clearly all about quality of life. Once the trip is over, you can discuss what he wants next, that is if he is willing to discuss. Maybe his daughter found out more during the trip or she is more able to communicate with her father to ask the ‘tough’ questions. Nothing tough actually, not knowing what Dick wants is the only thing that’s tough.
Is it denial? Maybe it’s not wanting to cross the border where you accept that you are in need help. Who doesn’t want to stand strong? Dick wants to be in charge, well, any boss in a firm is in charge, but they only get the job done by telling others what to do. Maybe you can ask Dick what he wants others to do with keeping him “in charge” and help him to achieve his goal(s)?
As a caregiver I don’t have the experience to answer the ‘is it denial’ question. Dick and Kath-e are the ones that can answer that question.
Chocolates… were part of “quality of life” in my father’s life. Cigarettes were part of “quality of life” of Patrick Swayze when he was sick with cancer. As long as Dick can decide for himself, and his decisions are no threat to himself (compared with the threat of the mets) nor to others, then Dick should decide. If Dick gives you a ‘will’ what he wants others to do when he can’t decide for himself anymore, then you all have “a good guideline” what to do.
Hope that helps Chibi, but I am sure more questions will rise, so please ask and we will share.
Hugs and lots of love,
Kim
KIM …kath-e here again…seems the sicker im getting the less time ive been able to spend online however…kim im just now getting to your mail regarding that… being as though another cancer patient with mets liver cancer and both living in the united states that we shouldnt have any problem over here because were a country that makes up the laws as we go along and then on the next line you say no nevermind just call hospice…well your ignorance just doesnt stop does it…mental illness is one thing..however ignorance has no excuse…
kath-e here again for everyone wishing you all well and to let you know your in my prayers as well…
as for me…i just hit my 4 month mark…on a 4-6 month prognosis…i will say i feel ive been fortunate on the first 4 months for the most however…part what of what …has just ended…now on to a new beginning on whats being called the last two months of my life…
today..my hospice nurse will be here and its always a pleasure as hes a very kind gentle…gentile and extrememly knowledgeable…
ill begin trying a new pain medication today and im anxious for many reasons…that it wont work…it will make me sick…will i be able to be functionable …i hate this part….but i cant suffer any longer and the prior meds stopped working… so hopefully
anyhow…. a typical day is pretty boring…living at home i love that part…the nurse is here every day 5 days per week and as of now im still able to care for myself and dont need any help at home but probably bec im stuborn (like we all are)….i need pain meds although with meds its barely bearable….thats why they have to be changed or increased and nauseau is setting in and im down to 87 lbs…food is the last thing i want to think about…sleep oh yes…cant get enoughbut then theres my poor piggys…they are so swollen and its almost to the point of disfiguration from the ankles down…but today they are going up from the ankles and this has been a month with the right ankle being smaller than the right …just looks like you got a pop-it like a balloonj or they are gonna break….yikes….anh yes they do hurt and they feel tight…but when i get up in the morning they are swollen so i have to keep-off as much as possible
im thinking that the nauseau is being caused by the liver failing from the unability to filter out the toxins…its a week now since i need the zofran at least 3 days per week…but it tastes alot like a baby aspirin and you let it dissolve it under your tongue and in less than 10 minutes your nauseau is gone….
ive got a lot of liver pain and also abdominal discomfort as well….itching itching and itching…hmm like cancer of the itch…but i thnk that may also be a symptom of my non hodgkins lymphoma-folicular cell stage 4b…ya know ill tell ya…i am a litle worried bec they say you have to treat the primary first which is the non hodgkins lymphoma follicular cell stage 4b upon 1st diagnosis…2nd diagnosis same time(2004)…bone marrow cancer…liver cancer on the hepatic artery….not to mention all of the nhl symptoms and liver symptoms….so ok all of this is lymph node cancer …ive just heard that…and also that the liver and the lymphoma have one thing in common and that is blood…non hodgkins lymphoma is also a blood cancer…i get to thinking and i say self…what do i do now…treat the first one ok gotcha but…the blood running everywhere which makes the C uncatchable…. with that runnin in all the spots of C that it is …its everywhere …fevers daily..chronic nite sweats..tired..no appetite…no desire except for great granddaughter and my grandson and granddaughter and my great grandson to be 12/30/10..i love my family and hospice..be back again
god bless
all
Hi Kath-e,
Feel free to update when you feel like updating
Seems you misunderstood me about calling hospice so let me clear that up:
1. You called hospice and they came to help you.
2. Chibi called hospice and they didn’t come to help her.
How you relate these 2 facts with me having a mental illness or being ignorant, is up to you to explain
Itchiness in father’s case was a side effect of not being able to get enough fluids distributed everywhere in the body: simply drinking more doesn’t help as the body isn’t functioning as it should and water/fluids starts sinking with gravity to your feet. Sleeping with a pillow under his feet was a little helpful.
What new pain medication are you getting? Hope it will keep the pain under control: in father’s case some days it was difficult to adjust the dose of the pain medication due to a growing liver that keeps on pushing more and more into the nearby organs. What works today therefore doesn’t work tomorrow.
Lots of hugs and love,
Thanks for sharing,
Kim
KIM-kath-e here…you sicken me …helllloooo is anyone home ive about had it with you kim putting me down bec i think hospice is so nice n wonderful…more than anyone can express…you are mocking me and i dont freaking like it!! so just check out your O.D.D and your other obvious mental illnesses that need to be addressed…what is your problem with me..as from where i see it …your abusing me an i dont know why im allowing it…not to mention why your doing it and dont say doing what bec you know exactly what im talking about…if it aint you talking about me saying how wonderful hospice is mocking me..and then it turns to the western culture and what would kath-e do… oh we know what kath-e would do dont we cuz shes from the wesern culture…damn you…this isnt bout you ok got it …its not about cultures or thoughts or about the fact the you people cant make a proper decision bec you are probably A.D.D. and cant pay attention as to making a proper dedcision…you need more prayers than i can give and i am sorry for that….
just want you to all know if it werent for hospice there would be no one at all…thats right now ya got it kim…i have no back-up plan 1..2…3…4…none kim do you comprehend that unlike you who were so able to put plans together…i feel bad enough that i have no help at all and then there is your situation but no worry there bec you have everything in place kim right…no errors im sure…well…congrats to a job well done…according to you that is….all i m worried about would be the quality of life and aother thing kim you act as if this money would be coming out of your pocket…hmm…im sorry but that one im not buying kim…ya know you do more bitching than the poor patient who obviously according to you can afford his own healthcare…get over it kim this is not about you…or cultures as it seems you want to be the renowned care giver…give it up kim….you obviously careabout you and what you do more than you do any one patient…you make me want to vomit!
i have minimal health care however in the catastrophic level…i pay nothing extra and actually the ins company for my health ins even has their rn call me once monthly as well as being there for me 24-7 as the hospice organization is their 24-7 as well…you watch a lot of tv kim or your so caught up in your own mental health that you are what seems to be all that matters…what you feel ….think..not to mention your interpretations of other peoples feelings…all sickening bec the focus here is on you and only you…get over it kim its not about you not now …not ever….
KIM…a pat on the shouder is what you want but you wont find it here with me and thats for sure….its about the mets liver cancer patient first and foremost…but seem to have lost that ideal…sorry kim…your only perhaps…next in line…
Dear Kath-e,
I appologize for you thinking that I am mocking you or putting you down. I am not.
I am not looking for a pat on the shoulder: what is there to pat about? Parents take care of their children 24/7 for at least 20 years and then the rest of their live as and when needed. So giving back a bit of care at the end of father’s life doesn’t deserve a pat at all.
If there is a person to be admired here, then that person is you Kath-e: going it with no help from others it seems.
Don’t assume that I think I did the perfect job. I never said that and I never will. Did I make errors? Sure I did.
Like you say Kath-e, this site is not about me. It’s about my father who passed away due to a failing liver caused by metastatic liver cancer. He asked me to put this website online where he would start the first posts: http://www.metastaticlivercancer.org/2006-11-09-cancer-treatment/metastatic-liver-cancer/ . Until he couldn’t post no more. He asked me “when the day comes I stop posting”, keep the website alive so others can learn something or at least know that they are not alone.
Hugs and love,
Kim
KIM…kath-e here again..thanks to the morphine that is…which im taking morphine that is liquid and for breakthrough pain as well as morphine tablets for so i am suppose to as i said suppose to…take away the pain and doesnt however sometimes it does take the edge off a bit…tis common sense one day you will always need something stronger..
as for the itch 1st of all its called pruitis and there are several kinds..its an itch that never goes away as it just cant…due to a brain avm…which is an incurable brain disease and not cancer im unable to take certain types of meds such as aspirin..nsaids..any anti-inflammatory drugs..i’ve become an epilectic and taking an anti seizure med called dilantin..a lot of it as well…and guess what ..it turned toxic in my body and i almost died as a result..thank god they changed it to a newer anti-seizure med called keppra and ill tell you what… omg what a difference it made in my life…another drug though that is metabolized through the liver…not to mention my migraine meds go through the liver as well in fa all my meds go thru the liver duhh….my point is ive been referred to many anti-itch meds but cant take them due to chronic and serious side effects…sometimes fatal…i scratch till i bleed sometimes and bec i cant fight off infection ive got to be extrememly careful..have to avoid large crowds bec my immune system has been abnormally compromised and i cant afford to catch any germs as im not able to fight off infection in anyway…
nows…the moment we have all been waiting for ..im sorry sometimes for being so honest bec im not one to hurt anyone …however…you are on my last nerve..dont get me wrong though…
mental illness–Oppisitional Defiant Disorder===O.D.D.====
one who is always on the opposition…primarily arguementative to the utmost extreme…your well spoken which can easily make someone intimidated by you and i think that is your fuel…for your car…please dont mistake this for a glass half full a glass empty…please dont insult my intelligence…something you seem to be quite well at… i might add i however can see right through you and what i see is sad…so sad…
hmm..what masters degree was it that you have …ive seem to forgotten..
im mentally ill as well=i suffer from chronic depression which is the least of my mental illnesses….but ya know what…my name is kath-e and im mentally ill…see its ok but again like anything else…you have to come out of denial first….
one thing more about swelling of the feet of which you mentioned..i was told by mr dr that the swelling is called lymhphedema and its bec my lymphatic system isnt working properly bec of the non hodgkins lymphoma (blood cancer) did i mention its not working right bec of the cancer of the lymph system…as well as from the mets liver cancer…and with all of the lymph nodes in my liver it doesnt make anything easier …just a new home for the follicular b cell cancer to liver..did i ever mention i did two years of chemo hard core 5 chemical chemo 8rs day every three weeks for two years…and i failed that…i then tried another kind of chemo (1chem)
it didnt take …and not to mention all of the blood abnormalities i have including low white and red counts and anemia..high lymphs…high ldh…leukopenia…several others….
i believe i answered your questions…
ps my feet are now since yesterday not able to be walked on bec of the fluid that has accumulate in my feet and up one leg to the knee…elevated for 24 hours less 15 minutes…they didnt go down…im told its not going to get better …only worse…and im still searching for answers…
please all share with me i need to know..what will my end be like …ive stopped taking most of my other meds bec their metabolized in the liver and whats the sense… thats less toxicity going to the brain…
prayers and love till i cant no more…
Hi Kath-e,
Your doctor should be the one answering what the end would be like based on your personal situation. Sharing experiences:
My neighbour passed away with lung cancer, because he couldn’t breath properly. No side effects to the brain.
My father passed away due to a failing liver caused by metastatic liver cancer with unknown primary. What his mind went through is comparable with Steve’s father’s experience having kidney cancer spread to the liver:
http://www.metastaticlivercancer.org/2008-08-23-cancer-treatment/metastatic-liver-cancer-mind-games/
Again, your doctor should be able to give you an accurate idea since he knows you.
Love and hugs,
Kim
My mom – 62 – was recently diagnosed with secondary liver and pancreas cancer. Started with cervical cancer 8yrs ago, she’s been cancer “free” off and on over the last 8 yrs – many rounds of chemo. With this latest diagnosis, mom has lost 20 pounds in the last 2 weeks, has fentanyl patches and morphine pump for the pain. She was jaundiced, so they successfully inserted a stint in her liver – and the jaundice is gone. Doctors have indicated mom has a couple of moms at best – hard to keep up with how quickly this disease progresses. I’m trying to be positive – but 2 months…really?
Hi Debbie,
2 months: as in Billy’s cancer story :
http://www.metastaticlivercancer.org/2009-01-13-cancer-treatment/how-billy-passed-away-what-the-doctors-dont-tell-you-about-metastatic-liver-cancer/
Lots of hugs for you and your family.
Hi, Debbie,
I’m sorry to hear about your mother and her grim prognosis, “2 months.” It doesn’t seem real or fair that your relatively young mom should have such a short amount of time left. Time is all she has left, yet time is just days on a calendar, hours on a clock.
I hope her pain can be maintained so that she can continue to share her time with you in relative comfort.
Chibi
Hi,
I’ve been reading the posts on this website trying to get information about metastic cancer. A family friend was diagnosed with breast cancer about 4 and a half years ago and she went through CT and since then, had been cancer free.
About two months ago, she started to cough and her family doctor gave her antibiotics assuming it was nothing serious. After a month of having this cronic cough, he sent her for X-rays where they found cancer on her lungs. After seeing her envlogist, he asked for a number of tests and they confirmed she has the cancer not only on her lungs but also the liver.
I went woth the whole family (3 daughters and her husband) when he gave us the last results but he didnt give any explanation as to how long we are talking about (life-expectancy). He sais he wanted to start CT right away and she’s having her first treatment tomorrow.
We wanted to talk to the doctor openly about a number of things but we didn’t. My friend wanted to go on a trip to visit her family overseas and he suggested to start the treatment ASAP and didn’t recommend her travelling although a few weeks ago when we went to see him he had told me he would let her go on the one-week trip before starting any treatment. I wonder if the last tests showed something that forced him to cancel those plans.
Do anyone of you think she could be OK to travel once she starts CT? Would it be too late for her to see her family overseas?
Right now, she has a swallen arm which is painful at all times, her tummy is starting to grow (she noticed that on the weekend when trying to put on a dress), she’s never hungry and she’s always tired.
Ah, the doctor also told her they had found somethings on her brain and asked her to stop driving. She doesn’t feel anything on her head to suggest she has anything wrong there, but the doctor told us they found something there.
Any suggestions on what to recommend?
Dear Martin,
I recommend you ask a diagnosis first and why the treatment will be given:
-to eliminate the cancer (meaning the doctor believes he can cure it) or
-to reduce the cancer (meaning the doctor doesn’t believe he can cure it).
Since the oncologist wants to proceed asap and doctors sometimes aren’t approachable easily, I recommend you ask her doctor to ask the oncologist “all the questions you wanted to ask but didn’t ask”.
Lots of hugs and prayers for you, your friend and your families.
To all,
Here are two links to a radio interview by Terry Gross on National Public Radio’s program called “Fresh Air” and to an Aug. 2nd article in “The New Yorker” both by Dr. Atul Gawande.
He talks about focusing on improving the days a terminally ill patient has left.
1. Dr. Atul Gawande’s radio interview is called ” Make End Of Life More Humane”
http://www.npr.org/templates/story/story.php?storyId=128828629
2. The doctor also wrote an article called “Letting Go.”
http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande?currentPage=all
You can copy and paste these links into your browser to read/hear the interview (transcript is also available) or article.
Since so many of you have shared great advice or listened to my hardships with my brother who has metastatic liver cancer, I hope you can find Dr. Gawande’s words helpful.
Chibi
Thanks Chibi for your research, which I summarized at : I’m willing to stay alive, if I’m able to eat chocolate ice cream and watch football on TV
Feel free to update what’s going on in your life and please give feedback how we can improve this site.
Thanks for sharing,
Kim
Kim,
I was happy to share Dr. Gawande’s words with your website as they really struck a chord with me and I find I often refer back to them. One of his comments, attributed to the neurosurgeon-father of the palliative care doctor-daughter, that I took to heart as it related to my brother was: “I’m social — I need to be around people.” It’s when I realized that more than anything, perhaps even more than his kids and his family, going out and chatting with people, being listened to was vital to his wellbeing. Even if he’s not feeling too well and he’s pursuing a lifestyle what I see as reckless, he’s able to draw energy from others. That is what’s important to him, even if it’s unspoken, and so he makes his tradeoffs. His priorities are what’s important to HIM and that’s what I need to understand and appreciate.
Right now Dick is entering his 8th month of chemo (2nd line begun in January) and his 13th month since his current diagnosis. He’s been delaying a CT scan (last one was in March) and still struggling with vision in his left eye. The eye doctor says an operation to remove (?) the tissue under his eyelid is a possibility, provided his oncologist, cardiologist and primary agree to it AND insurance pays for it. (His eyeball is bulging outwards making his eyelid scrape against it, causing a film to smear over his eye.) I think he’s holding off the CT scan because it may show he needs to stop chemo or if he does get the surgery, he’ll be unable to drive for awhile or his vision may not improve — could even worsen. Actually, I wonder if his chemo or affects of cancer are causing this eye bulging. He said he’d let me know when his next oncology appt. is.
In the meantime, I’ve invited both his kids to go to the American Cancer Society’s support group meeting next week. Their topic will be “Sharing the Stress for Caring for a Loved One with Cancer.” I’m hoping one or both will go.
Another comment from Dr. Gawande that I picked up on: “The moment of crisis always comes, and we want medicine to help with many of those steps. We don’t want to abandon things that might get us more of the life we want. But medicine’s focus, what we do as doctors, is we sacrifice time now for the possibility of prolonged life. ”
Take care,
Chibi
8th August 2010
Update on Jim,s son.
In one weeks time it will be the second anniversary of my sons’ diagnosis of metastatic liver cancer; much better than the six weeks he was given at the outset.
His is still doing very well; his cancer counts are down below 300 and is is still maintaining weight.
Obviously the Erbitux is working for him and it is being continued.
I don’t have much more to say but take care of yourselves and loved ones.
Best wishes,
Jim
To Jim,
What a wonderful update on your son! He is so very fortunate to have great doctors and treatment but more so, to have a supportive and loving dad, too! It’s tremendously encouraging to hear that he’s at his 2nd anniversary.
More good luck to you and your son!
Chibi
Many happy returns Jim – Did a doctor’s mistake ever make you happy? –
and thanks for keeping us updated.
Thanks Chibi for Dick’s update and your articles. It just made me think how good it could be for a patient and his loved ones, when a doctor could talk to and treat the patient with the compassion, time and experience of a hospice care giver. And of course using another word for hospice when the patient still opts for a tratment in order to get cured. Bottomline: "something is missing in the doctor’s office".
Big hugs to all of you and take care!
I am 15 months out after liver resection/10 months out after chemo. Feeling pretty good. Pretty amazing.
Kath-e,
This is Chibi hoping you are alright and wondering how you are.
Please take care,
Chibi