Metastatic liver cancer

Another Liver Cancer story we received in our call for "Do
you have a liver cancer story". Thanks Kaye for sharing Kim’s liver cancer story. All our love and hugs. Please leave a comment and show Kaye your support!

For those new in liver cancer, Kaye’s story just like father’s metastatic liver cancer story tells you:

• there is an invisible killer amongst us that even the medical world cannot pinpoint on time…
• lots of doctors ignore red flags that should point to further analyses and could point to an early detection of cancer (why we have all these medical facilities and people, when they are just under used???, don’t say it’s too expensive: nothing compares with the billions wasted in Iraq…)

For those that have a loved one with cancer in palliative care

• … shocked and still in disbelief at the rapid decline and death of my beautiful soulmate…
• … the palliative care nurses came to our home like angels in the night and without them my husband and I would not have been afforded the dignity and our wish for him to remain with us till the end …
• … some things you don’t tell to even your most beloved one …

Liver cancer prognosis

Some of you might say: I have heard liver cancer stories where the cancer patient still lives on for 2 years after being diagnosed with liver cancer.

This is true, but most likely because the liver cancer was diagnosed in its very early stage.

In Kim’s story below they did notice "red spots" 18 months ago…

Symptoms of liver cancer

In Kim’s story we read some extra symptoms we never noticed with father’s metastatic liver cancer… We also learned from mother that father once told her "he had something on his mind he couldn’t tell her…".

Both:

• recognizing symptoms early and
• talking about

can let your life turn into another direction…

BUT:

why is there no talk about cancer prevention???

We are still looking forward for any politician who puts cancer prevention on the agenda…
Or in other words: who puts a healthy lifestyle on top of the agenda…

Better be safe than sorry is extremely true when it comes to cancer…

Kim’s liver cancer story

My husband, aged 49, died of liver cancer on the 5 March 2008.

He went for a employment medical in mid February2008 and the doctor noticed some red spots on his upper body. (other doctors had ignored this earlier) These had been around for about 18 months and we had put them down to burst blood capillaries that his dad has too.

The doctor felt his liver and said it was enlarged and referred him for an ultrasound & blood test

The results we received on the week preceding the 18th Feb were good news in that the diagnosis was benign growths and he had Hep C. (My husband was an ambulance office early in his career & this may have been the point of infection)

His concern was for me however & I tested negative for Hep C on the 19th and the doctor referred my husband to a clinic to treat his Hep C.

At the referred clinic appointment on the 21 Feb the doctor said my husband needed urgent blood test and cT scan. The bloods were taken that afternoon and the CT scan was performed the next day on the 22nd Feb.

My husband went into the scan appearing and feeling well and the moment he came out he complained of a sore shoulder which he thought was from laying in the machine with his arms above his head.

By that night he was in extreme pain and by the 23 Feb afternoon I took him to the local hospital emergency to get some relief.

The pain did not subside and on the 24 Feb he started to hiccup and did not stop. We again went to the local hospital emergency as the hiccups were interfering with his breathing and he was becoming very exhausted.

More pain relief coupled with valium were prescribed to relax his diaphragm. My husband was not to happy to be drugged so much and I was becoming increasingly concerned about him.

On the 25th February (Monday morning) I rang the clinic and pleaded with them to see my husband as I KNEW there was something really wrong and his face was very sick looking.

We were advised to come through the clinic’s hospital emergency and after waiting a number of hours (while my husband continued to hiccup) a registrar from the clinic came to see him. She said that the hiccup and shoulder pain were part and parcel of the “advanced aggressive liver cancer” that my husband had.

We were flabbergasted/stunned/shocked/crying and said that this was the first we had heard of CANCER . The registrar explained that there was no available treatment and requested that we keep the appointment we were meant to get the ct results at for the following Thursday (28th February) to discuss palliative care.

We returned home and Kim and I decided not to tell anyone in the near future to let ourselves digest the prospects.

That night I googled liver cancer + hiccups and some site referred to this symptom as the ‘final stages’. I shut the computer down and didn’t tell my husband this.

In the meantime the shoulder pain and the hiccups continued into the 27th and by lunchtime the drugs prescribed over the weekend by the emergency doctors at our visits rendered my husband bombed out and he stopped breathing.

I called his GP in a mad panic and shook him to life and called an ambulance.

I called all our kids and my husbands family. we became inundated with visitors.

The doctors asked if my husband wanted to stay in hospital and all we wanted to do was get home which we did.

We went along to the scheduled Thursday appointment at the clinic and the doctor told us my husband had about 2 months to live. We cried all the way home in the car.

Thursday night and the pain increased and I got on the phone to palliative services in desperation on the 29th and with the help of the clinic urging them to come they visited us at home that day.

The nurse took one look at my husband …organised better meds for pain relief and told us she thought he had a week or 2 left at best.

A morphine pump was fitted to Kim on Saturday the 1st March.

He was given steroids which lifted him on the 2nd and 3rd.

On the evening of the 4th after much love amongst us all and the kids we went to bed and he started to die before my eyes.

He died on the 5th at around 10.45 in the morning.

I am shocked and still in disbelief at the rapid decline and death of my beautiful soulmate.

I believe the contrast that my husband drank for the CT scan blew his cancer and symptoms up and hastened his death. Only consolation is that this may have shortened the time he was in pain.

On reflection symptoms of lethargy were around about 18 months beforehand that we put down to his dislike of his job ( which he changed and worked hard at his new job)

He also went thru bout of itching about 18 months prior to his death.

The palliative care nurses came to our home like angels in the night and without them my husband and I would not have been afforded the dignity and our wish for him to remain with us till the end.

Do you have a liver cancer story? Leave a comment and share your cancer story with us: it’s a relief to know that other people have lived the same ordeal and that don’t have any judgments about the things you did and didn’t do…

Technorati Tags: CANCER STORIES, Liver Cancer, liver cancer prognosis, liver cancer story, Metastatic Liver Cancer, symptoms of liver cancer

Palliative care : Questions from Sue and answers from our metastatic liver cancer experience.

Sue’s palliative care questions

Sue left this comment at do you have a liver cancer story?

God Bless You for what you are trying to do.

I am taking care of my 81-year-old mother who up until last year looked and behaved like a 50-year-old. It is so hard to see her in the state that she is in now. She is so weak and does not want to eat anything. I beg her to eat because of all the meds she is taking but she does not want anything. She does drink a lot of water though. She does not want to go to palliative care and so I am doing the best that I can at home. It is so scary and sad.

How do I know when the end is approaching? I would appreciate any help you can provide.

Metastatic liver cancer answers

As you would have noticed: Sue doesn’t mention if her mother has cancer or not. But she does stress :

I am doing the best that I can at home. It is so scary and sad.

Again, although this blog is about metastatic liver cancer, we don’t look from the doctor’s point of view, but from the eyes of the caregiver, be it Sue, or you…

Do what you can for your cancer loved one : it’s the best gift for him/her and yourself

It is so hard to see her in the state that she is in now. This is a feeling we felt as well…

When you are doing the best you can taking care of a palliative cancer patient, you do have to tell yourself that you cannot do more than you are doing.

You give your loved one the live in the best way you can, although we all know that a "normal person’s day looks more full". Father knew that he was given people "more work than they should" although he never asked for that.

Compared to putting a person in a cold hospital environment, far away from the people and place they love the most: taking care of a person at home increases the quality of life of the person you are taking care of BIG TIME!

It always helps when people have talked about this before they get sick, but most likely you don’t have that luxury now. We for sure didn’t but we did know father, we did know what he loved, so we tried to give that as much as possible. That’s all you can do Sue…

She doesn’t want to eat…

Give food in small portions. Father’s belly was a few times bigger than during the times when he didn’t have his metastatic liver cancer. Just imagine you have no more space in your belly: how would you feel adding food to it?

We did give "astronaut drinks" : you can buy them in the local pharmacy: they are very nutritious and father loved them. Having cancer, being tired… most likely everything that’s makes life more easy is welcome.

We also gave father’s favorite chocolate desserts: yes, he had liver cancer, but at that moment the cancer is much more dangerous than a piece of chocolate. But in the long: expect that the next day will most likely be a bit less of everything you experienced today… So appetite became less, his eating became less and his body absorbing the food became less.

She is so weak…

Sometimes father couldn’t stand up out of his bed. We we always afraid father would fall because he looked so weak. Yet he managed to climb the stairs a few times still…

On the other hand, our uncle who had kidney cancer just fell next to his chair when trying to stand up from it, and in the process broke his hand and hip…

So again: you do the best you can and also hope for the best (uncle was monitored by his dear wife 24/7 as well, but 24 hours minus going to the toilet… and after coming back: broken hip and broken hand…)

In an ideal world there are more than 1 care-takers around 24/7. We had about 3 family-members doing that, which is a different story than when you are on your own like Sue.

She does drink a lot of water…

That’s good news, father didn’t drink much…

If there is too much water in the body, it will start accumulating from bottom to top (feet become bigger…).

If there is not enough water, then the skin will become dry. Pull your skin up and see how it bounces back. Then do it with the person you care about: if the skin is not bouncing back, it’s an indication that the person is getting dehydrated.

Again: when talking about terminal cancer: all will get worse every day, so you have to do a difficult balancing act between:

• enough water,
• enough food, not too much pain and
• enough stool…

And these are just the primary needs of life, we didn’t talk quality of life yet…

How do I know the end is approaching?

First you take the liver cancer prognosis from your doctors as a guidance. Then you make sure like we did: get palliative nurses in every day and make sure the house-doctor comes in every once in a while. Like that they can tell you following their experience "if the end is approaching or not…".

Yet they are not eager to give you that information because nobody can predict the future. It’s a give and take between the care-givers and at the end stage of father’s metastatic liver cancer: the nurses did put their attention to mother: telling her to take better care of herself. Meaning: the end was near "when mother was almost finished and father was as well"…

In medical terms: the liver cancer patient will get jaundice (yellow eyes). Now I one day thought father’s eyes were yellow so I asked the doctor. And the doctor said: you father’s eyes are as normal as possible… In other words: if you don’t have the medical experience, even yellow eyes are not easy to spot.

According to our doctor the last days are approaching when the cancer patient becomes itchy all over… We never experienced this either: father passed away in his sleep…

When you are very close to the person, you feel when the end is near though: the last day father took all the blankets from his bed (it is said in the common believe that that’s a sign of a person that is changing this life for the next). But more compelling were his words to mom: "if I had to do it all over again, I would have done it with you for sure"… Very clear words from a very weak person…

That night his breathing became weaker and the next day there was no more breathing…

Myself I had the feeling that father was "getting worse" suddenly, so I told all my brothers and sisters: if you do want to come still: better come soonest. They all came that week-end: father must have seen that we all managed well without him and the next week he passed this life for a life without pain…

Do you have a liver cancer story?

If you have a cancer story, please share it with us in a comment: it’s more easy to say: you have cancer than it is to deal with cancer… But we see that people that lived with a loved one having cancer do have similar questions, anger, feelings…

So share your story : it will help others and you will find out yourself that you are not alone…

Technorati Tags: blog, Cancer, cancer answers, cancer experience, cancer patient, CANCER STORIES, care questions, caregiver, god, Liver Cancer, liver cancer story, lot of water, meds, Metastatic Liver Cancer, old mother, Pain, Palliative care, point of view, stress

Terese for Pammy and the rest of us
(pammy’s liver cancer story please give your hugs)

I am reading this. My husband,45, has Angiosarcoma of the liver.
He never smoked, took drugs or worked in a factory that emitted chemicals. We have two children,13 and 9, and we just found out that the chemo that they are using is not working so they have switched him to a new drug. He just came home from the hospital and doesn’t have enough energy to make it up the stairs. I can’t stand to see him in this state and I fear he doesn’t have much time left. We just found out on Oct 31 that he has a liver mass so it has only been 8 weeks and already I can see how cancer causes such pain, pain that no person should have to endure. Keep us in your prayers.

Terese 

Dear Terese,

All our prayers and hugs for you and your children.

Father most of the time didn’t have the energy to walk up the stairs either, so we put a hospital bed in the living room where he slept the last months of his life. Yet sometimes "father was gone" : just managed to walk the stairs on his own and sleep in his good old bed…

Pain: we opted for NO PAIN : meaning giving the pain medication every so many hours and progressively adding more medication when needed.

Hugs and prayers.

What is Angiosarcoma

A type of cancer that begins in the lining of blood vessels. This type of tumor tends to be aggressive, recur locally, and spread widely. It can originate anywhere in the body but is well known to arise in skin, soft tissue, liver, breast, spleen, bone, lung and heart.

Father’s metastatic liver cancer was called adenocarcinoma… all in all words without a real meaning for us, especially when you hear the word cancer and you don’t hear the word cure…

Technorati Tags: chemicals, chemo, Drugs, liver cancer story, liver mass, oct 31, pammy, prayers, stairs, terese