Patrick is scared for what is to come… Patrick’s story below (commented at Can chemotherapy cure metastatic liver cancer?) feels like he is telling our story with our father, our fears included …
We will share what we did in the hope, Patrick, you can gain some much needed strength out of it.
Get as much care givers as possible
Rule number 1 is that your father needs a person 24/7 who only takes care of father’s need. This would be the ideal situation.
As you can understand, one person can never-ever give 24/7 support. So you need to find as much people to help you as possible and as much help as possible.
When people wanted to visit father I told them:
if you have a pot of thick, healthy homemade soup ready, just bring, so we have some food already.
Because people who don’t know what metastatic liver cancer is about, don’t understand that care-givers just don’t have enough time nor energy to do it all on their own.
So what’s crucial is:
- to know you need lots of help
- to be assertive-aggressive in asking help
And don’t be fooled: my hubby went all the way up in father’s health insurance company because the social worker in charge didn’t see mother was having a problem taking care of father.
We managed to get:
- mom who was around father 24/7
- 2 children who dropped their work in order to help out
- 2 nurse-visits a day to wash father and-or give medication, food…
- father’s GP on stand by 24/7 always prepared to answer any call and do what he can (mostly emotional support for the care-givers by listening)
- 2 times a week a 4 hour "family-helper": a person that helps in the household and is trained in being a shoulder to lean on emotionally and 2 extra hands to help out in the house and around
- emotional support from a palliative service, although seeing them twice in all the months father was sick didn’t bring much. Again:
the idea is to surround you with as much people as possible!
Be strong for father who is suffering the most
You need to have a plan and always tap yourself on the shoulder when your plan is working. Nobody else will drop by and tap your shoulder…
Smiles on father’s face were the biggest taps on the shoulder we got. Father died with a smile on his face, so as bad as it is, we do feel happy for that.
Our plan (from the care-givers in our family) was:
- to be around in father’s final months
- to show all our love
- to make sure father’s metastatic liver cancer would cause him as little pain as possible
Love and family
I understand when you say "me and father were never close". Well, this is the ideal time to show how much you love your father.
We as well as you Patrick are a family living overseas, so not being able to see your family is part of our life. Some of us came back and spend lots of time with father, some of us kept living their lives and only came for the funeral.
It’s amazing to see that some of your family members have other priorities than taking care of the person that has brought them up and sacrificed so much.
But that’s a reality Patrick, we had a few big quarrels amongst our siblings, but none of the quarrels ended up in extra hands to help. And extra hands and shoulders is what you need!
True colours of the cancer
Terminal metastatic liver cancer can be summarized as follows:
tomorrow won’t be as good as today…
Metastatic liver cancer facts
Eating becomes a problem due to the large liver taking space in the abdomen where the food should be. Simple logic, very painful for the patient and for you seeing it happen each and every meal.
We did have some "astronaut food": very condensed survival food, but even that can’t stop the fact that
tomorrow won’t be as good as today…
Levels of metastatic liver cancer
We were briefed about levels as well: then this will happen, then that. More pain will need more pain medication. More pain medication will cause more constipation so stools need to be monitored.
What were weren’t told was the mental breakdown of father. In fact: all our diploma’s, work and life experience didn’t prepare us for this at all…
We didn’t see much of "the levels" as every day was a new challenge with new experiences. All you can do is making sure all your friends and family knows what is happening exactly and then wait for the response.
We did get enough help to get things done, although we have to stress:
much more help is needed
to really talk about "quality of life".
The family that cares lives in New Zealand
This sounds so familiar: the people living the furthest away seem to be caring the most. We cannot give a solution here Patrick. We can only say that those who care and want to help do need to make a sacrifice. The question is simple:
- can a sacrifice be given without jeopardize your own life
I mean, quitting a job is easy, getting it back when you are above 50 could be a problem. But then there are other ways to get income and we must say by quitting what we have, we managed to built up new things we wouldn’t have done otherwise.
I read you saying :
it’s hard not having anybody here.
Do get people around you, be it your family, friends or professionals. Make an appeal to the people you love to join you and help you. Show your fears, worries and situation because lots of people think metastatic liver cancer is a disease like flu is a disease…
Scared for what will come
Your father will always be your father who will be able to feel your love.
So go there and show yourself.
People do change every day, it’s just that metastatic liver cancer changes a person with a velocity you aren’t used to. But you could compare your father changes with what could have happened in your entire life-span. Just that now it’s condensed.
The advantage you have is that you are fully aware of your father. Lots of people only realise about a person once the person has passed away.
Quality of life is feeling a person next to your side who loves you. It’s as simple as that and that’s what you can give your father Patrick!
I will still remember father hardly being able to walk, eat and carry on a conversation suddenly grabbing my moms hand and saying:
if I need to do it all over again,
I will do it with you again.
That was the day before the night father passed away. Imagine father would have had that thought but not able to communicate it because nobody was there…
People are only death when they are death
Sounds logical but people tend to talk about a person when he is still alive as if he is death.
So keep this in mind:
- as long as your father is alive, you can show him you love him and he can show you he loves you
- know that your father won’t have as many moments nor possibilities to show his love as when he was healthy.
Pain medication
Pain medication does work, and with a growing liver more pain medication has to be given constantly. It’s difficult to monitor when your father comes in a stage where he cannot communicate as you were used to.
You need to learn how to communicate without words again, like parents communicate with their crying baby. Rule of thumb from the nurses: when a patient sleeps, he is not in pain.
Father Son Relationship
Maybe you would have dreamt things to be different, showing your father all you had accomplished in New Zealand. Just like parents dream about their sun growing up as a famous footballer.
But lots of sons don’t become footballers but do other professions parents will be proud of.
You can be assured your father will be proud of having you around now when he really needs you the most. That’s all that matters.
All our hugs and prayers to you Patrick!
Patrick’s metastatic liver cancer story
I can’t begin to explain the hurt and the pain this cancer is causing my life..
I’ve 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 he’s now found out he’s got liver mets.
I remember my whole body just froze and I felt the pressure build up behind my eyes.. The only thing 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 couldn’t care less about him. So I’ve had to face this war with him alone. There has been a lot of ups and downs and only now has the cancers true colours 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 I am 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. I’m terrified to go see him as I’m 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.. It’s 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 can’t prepare myself for this..
@Elke,
Thanks for sharing Elke. Since we live overseas far away from our father when he was diagnosed with cancer, we share our story and answer your questions at :
Breast cancer in liver
Feel free to ask more question!
Lots of hugs for you and your family.
My sister has breast cancer spread to both lobes of her liver.
My sister who lives in Germany was diagnosed in September 08 with stage 4 breast cancer which had already invaded both sides of her liver. They can not operate and it is a very fast and agressive spreading cancer.
She receives pain medication which makes her constipated and chemo (taxol) along with Herceptin. The later has caused some big allergic reactions.
The second time she received Herceptin she went into some kind of a shock the doctor said it was an allergic reaction. She turned ice cold could not breath and kind of passed out, and had to be given medication to come around. The next week it was the opposite, 2 minutes into the treatment she said she felt like burning up and she rolled her eyes and passed out. Lucky there was one more patient in the treatment room who alerted the doctor to check on her. It took them a while to get her out of it again. Again she was told it is an allergic reaction and next time she is getting something at the same time to prevent this.
She is very sick all the time, difficulty breathing, nausea and of course all other side effects apply.
My sister is trying to protect her family an 18 year old son, husband and our father by not telling them the whole status of her health problem. She asked the doctor not to tell them the whole truth and I am the only one who knows more details. She is trying very hard on the phone to play everything down. I think to make it easier on me to, or she might not know the truth herself to the full extend.
She does not want me to come over yet, until she feels better and stronger again. I live in Missouri, USA and it is not easy for me to visit that often either, but of course I would come right away and see her if she is okay with seeing me.
So I do not know if she knows the full extend of her cancer or if I am overreacting and that there is a chance she can live many more years.
I am afraid that something could happen very quickly while receiving her medication, and I did not see her again.
She is my only younger sister and just turned only 47 years old, I can and will not accept to loose her anytime soon.
I am very, very sad and have searced the internet up and down for hours to find something to give me hope for her. Most of the time I only read that if the cancer has metastases to the liver it is always fatal, in a matter of fact extremely fast going towards the end.
People at work tell me I should just go and visit her, regardless of her wishes to wait until later. If I would do this, her family would become very suspicious, because I just paid a visit in March 08 and normally come around every 2 or 3 years.
When our mother died in 2004 in her seventies of breast cancer I came in between and everybody knew why, except my mother. She died however while I was back in the states so I did not get to say good bye either.
Only people who had this in their family can understand the feelings of sadness and anger at the same time. I keep thinking about my poor sister all alone with her fear and pain, because she has nobody to talk too. She wants to protect all of us from pain, while she really needs moral support.
Does anyone know how long she will still be with us. Is there a chance of a miracle and she would recover again, that means the tumors on the liver would shrink at least. She was told that she has very fast growing tumors, but to my knowledge was not given a time, but the doctor said, she has to have hope.
Is this just to calm her down, is chemo even doing her any good at this time? Is she suffering even more, and it has no effect on significantly extend her remaining time? Would she die sooner wihout chemo or is it about the same. Does anybody know this.
Thanks for any information and hope you can give.
Elke
@Patrick,
Thanks for sharing, our stories sounds so similar…
I share my grief after father’s passing away for about 2 years now in:
my dad is dead.
Hi everyone.. thank you all so much for your kind messages..
this is the first time Ive been back at the site since my dads passing.. its been a really hard journey for me the past weeks.
The day dad died I spent the first night alone.. it was probably one of the hardest nights of my life and being that it was a painful death and there was no one there but me and him when he died made it even harder. I’m still struggling with the pictures and movies playing in my head from those last moments.. When my dad died he took his secrets with him. Im just hoping things will get better soon.
Im sorry to hear what some of you have in front of you and all I feel I can say is to be strong – I know that’s hard when all your emotional energy just gets drained from you. But for those of us that get put in this situation, the will to stay strong comes from within
Again.. thanks for all the support..
Patrick.
@Lisa
Dear Lisa,
Read our cancer story answering your cancer story at :
Stage iv colon cancer
All our hugs for you.
My Dearest Friends,
I am going through the same as you with my father. We have been fighting the cancer for a little over two years now. It was first discovered in his colon and then popped up in his liver. They stopped him with his Erbutux Chemo’s over 5 months ago and since then he’s had more energy and has seemed healthy and happy and we were able to “pretend” that everything was going to be ok but still knowing in the back of our minds what was going to happen. I feel as though the beginning of the end has started to happen. He’s having severe pain in his right abdomen area and is not eating as much. I am currently 6 1/2 months pregnant and am trying to be so strong for the health of my baby but am finding it to me more and more difficult as his health depreciates. I am so scared as to what I’ve read online about what lies ahead for my mother, brother and I.
I want him to be ok again. It’s so unfair that we know what is happening to him that he is dying. I’m trying to continue living my life, I have a 3 yr old, pregnant, work a full time jobm, have a husband and now every second of every day want to be with my dad but can’t. I need someone to help me with some words of advice. Thank you.
@Rosanne
I agree with you. Although I would love father to be next to me sane and sound,
I really didn’t see the point in him going to all the suffering in the last months of his life.
Then he is much better off where he is now, and it was nice to see that he had a smile on his face when he passed away.
Patrick
I am very sorry of the death of your father. My mother too died of colon cancer metastsized to her liver. She was diagnosed in Dec 2004 and passed away om 27th May 2006 at the age of 60.
What makes me carry on everyday is as you say they are in a better place and not suffering anymore.
Take Care
With deepest Sympathy
Rosanne
Patrick, I am so sorry to hear of the loss of your father. I unfortunately will be facing the same fate as you soon.
My Father was 55 when he learned he had Colon cancer and upon surgical removal of the tumor and part of his intestine the surgeons noticed that it had already mets to his liver.
We have been fighting his Colon Cancer in the Liver since then and though he has lived longer than anyone thought he would, it has been very hard to see him deteriorate each and every day.
We are at the point that he needs his gall bladder out as it developed 2 types of Staph infections inside of it due to Chemo, however we cannot have surgery as he has such bad portal hypertension that he will bleed to death.
His Spleen is not working and is also suffering and much larger than it should be, we also cannot have that removed.
We also found out that it has spread to the lymph nodes of the lining of the stomach.
Needless to say he has had over 130 chemo treatments, multiple surgeries and still no remission.
Last May we were told he won’t make 2 years. He has become immune to every chemo he has taken and there is nothing left for him to try and he still can’t have surgery.
He recently turned 60 and many days he stays in bed the entire day due to the pain he is in. There is only so much more he can handle.
I truly am so sorry to hear of his passing, may your memories always keep him close to your heart.
With deepest sympathy, Lisa
@Patrick
Our deepest condolences.
It’s great that you were around when your father was waiting for you.
Please leave your condolences for Patrick’s father
Update –
My father passed away the 24th of September at around 3pm
I held his hand until the very end. They say my father waited for me to arrive before he felt that he could leave me.. It was like its always been – Just me and him and it wasnt until I said – I love you dad and I know you Love me that he finally took his last breath.. I know hes in a better place now and he wont have to suffer anymore..
I love you dad and will always remember you..
Patrick.