Metastatic liver cancer

Oprah tries to suck out of Cynthia Nixon why she loves a woman after a 15 year relationship with a man and having 2 children with him…

 

The same Oprah announces Cynthia Nixon survived breast cancer, the audience goes clap-clap-clap and Oprah can’t stop digging for more juicy details about Cynthia’s new relationship…

 

If you don’t have cancer, you don’t know what you are talking about

 

It’s as simple as that. Only cancer patients and cancer care givers know what is going on.

 

Just like I don’t have a clue how Oprah was sexually abused and what effect it had on her.

I can only see she has a "weight" problem, so I can only imagine what happened to her in the past still has a deep impact on her today.

 

The same applies to cancer.

 

I don’t have a clue how Cynthia Nixon must have felt when she was diagnosed with breast cancer and when she underwent breast cancer treatments.

 

I can only see that Cynthia Nixon falls in love again and I can perfectly understand why Cynthia’s love is a woman. Because:

 

Cancer is a life changer.

 

In case of father, his metastatic liver cancer changed his life for the worst as he died because of it.

 

It also changed the life of father’s closest care-takers.

 

All of us have kind of stopped our "comfortable life" from before the cancer and are going in a seemingly very different direction now.

 

Seemingly, because like Cynthia says : "love is love".

 

Love is the only reason
why care-givers carry on
caring for their loved one with cancer.

 

In the end it’s all about love, and it doesn’t matter if it’s falling in love with a guy or a girl.

 

It’s coming to terms with yourself and not giving much of a damn about what the rest of the world might think of you.

 

What about clapping for cancer survivors?

 

Before father was diagnosed with secondary liver cancer, I watched TV shows never wondering why people would clap because e.g. :

 

Cynthia Nixon survives her breast cancer treatments and
 
Lance Armstrong got treated for testicular cancer that had metastasised to his brain and lungs

 

Cancer cure and prevention: what is there to clap about?

 

What is there to clap about?

 

Most cancer patients undergo the same or even stronger cancer treatments and unfortunately most of them die after 5 years…

 

You tell me: what is there to clap about?

 

did somebody find a cancer cure? NO
 
did somebody find the direct cause of cancer? NO
 
did somebody find out how to bullet proof prevent cancer? NO

 

So what is there to clap about?

Technorati Tags: Cancer, cancer awareness, CANCER STORIES, cynthia nixon breast cancer, cynthia nixon cancer, cynthia nixon gay

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..

Technorati Tags: Care, care giver, chemotherapy, fears, hospice, Liver Cancer, love, Metastatic Liver Cancer, Palliative care

 

Thanks Trish for explaining how embarrassment can kill, please come back and write more!  

 

If you are a caregiver of a loved one with metastatic liver cancer , please read Trish’s cancer story.

 

Why? Because:

 

It is rare to hear first hand what really goes on in the mind
of somebody having secondary cancer.

 

Why? Because:

 

I remember mom saying that father told her more than a year before he was diagnosed with metastatic liver cancer something like this:

 

Father: something is wrong with me.

Mother: like what?

Father: something I can’t tell you.

Mother: but you can tell me everything, you know that!

Father:……

Father kept silent and since they were in bed, went to sleep…

 

If GPs don’t take you serious, change your GP

 

If there is blood in your stools, let it be examined! There shouldn’t be blood in your stools nor in your cough!

 

Trish found blood in her stools but her GP didn’t take it seriously. Just like my dad has colon cancer found blood in his stools and his GP said something like:
not to worry, must be bleeding hemorrhoids…

 

 

This blood in his stools came on and off for many months until father checked himself in the hospital himself. Luckily as the specialist removed a huge colon cancer that could have obstructed his colon by just a matter of a few more days.

 

And due to GP’s not taking father serious, his colon cancer has spread already to his lymph nodes. Unlike Trish, dad is in his 80’s, so he is not interested in chemotherapy…

 

We people still have a gut feeling that’s much more reliable compared with an overly busy GP who doesn’t get to the bottom of things.

 

Trish our only metastatic liver cancer survivor is back with 4 cancer stories in 1

 

Embarrassment can kill

 

Trish starts her comment to Paul at Jackie 43 years old passed away to metastatic liver cancer but

Hi,

 

Thank you for the hugs and kisses.

 

My heart goes out to you Paul & children.

 

When I thought I only had 6 months to go, I was okay with my fate, but I my biggest concern was my husband and my daughter, I knew that these 2 people would be the most affected by my demise, it was the thing that most made me cry.

 

I hope you have heaps of support
Paul, OXOXO.

 

My Mum’s partner (who she’s marrying this Saturday) entered my Mum’s life a little before I was diagnosed. He had lost his wife a couple of years beforehand to cancer.

 

From memory, she was being treated for cancer in her glands, and then it re-occurred and had gone to her lungs, she was being treated for lung cancer (unsuccessfully), but it was only the secondary, her primary apparently was hard to diagnose, she had ovarian cancer.

 

If the primary had been found first time round, it would have been treated, and if it had, I’m pretty sure he said that it wouldn’t have gone to the glands or lungs.

 

Sometimes when I don’t feel so great I get bitter, and it’s directed a 2 GP’s.

 

About 2 years before I was diagnosed, I had blood entwined with my stool (excuse me). I had managed to retrieve a stool and I took it to the doctor.

 

She gave me the obvious exam, scolded me for bringing in the stool. I remember her standing there with her hands on hips saying “What am I going to do with that?”.

 

You can imagine how embarrassed I was, she sent me off saying it was probably a hemorrhoid, by then I was double embarrassed.

 

I could feel something inside me at that stage about the size of a golf ball.

 

About 20 months later I went on a holiday to Russia (from Australia). I’m sure that being in the air brings any sickness out to open, I was sick all the way, and was sick for 1 day whilst there and sick on the way home.( I never got sick).

 

When I got back,
I went and saw another GP, same clinic, had a CT Scan, all she could focus on was a swollen cyst, which had been there for 8 years, she wouldn’t focus on the other white blob, which was bigger???

 

This GP was as dumb as the first, she gave me a pap smear, asked me to raise my pelvis cause she couldn’t get the speculum over the big lump….

 

DUH

 

…..Still didn’t register. Had it been found then, about 2 months before my final diagnosis, it would not have reached my liver. It was pretty aggressive until I started chemotherapy.

 

Unfortunately I can’t warn people to get a second opinion, because by the time you reach this website, it’s too late, the last thing you expect your doctor to tell you is that you have cancer, so you don’t investigate this far yet. I was certain that I had a twist in the bowel or something.

 

I bought two wrist bands yesterday because they were for bowel and cancer research, I just tossed them in the car. My daughter picked one up and read what was written on it. It said

“embarrassment can kill” How true.

 

It would be good if we could avoid that sniper, how appropriate was that statement, well said.

 

I had a CT Scan last Friday, 9th Sept. Hope all is well, I hope that they’ve shrunk even more.

 

Love to All,

 

Trish

 

Lots of hugs and prayers to you Trish.

 

Please drop by again if you can Trish and write about anything you have on your mind. Nothing will be censored here as too little is know and said about metastatic liver cancer.

Technorati Tags: Metastatic Liver Cancer, metastatic liver cancer survivor, primary cancer, secondary cancer, Secondary liver cancer