Heather feels "she is doing it alone" in her comment at Metastatic liver cancer facts : secondary liver cancer.
That’s why we have our metastatic liver cancer site so everybody can share their experience and feelings with others:
to walk the path of secondary liver cancer together…
We ask all our readers: please leave a comment so
Heather doesn’t have to walk her path on her own.
Why do we feel like walking the cancer path alone?
Unfortunately cancer keeps a taboo, too much media focuses on "heroic" cancer survivors and people lack the education to deal with palliative care:
- There are people who just shy away and don’t even dare to come near to a cancer patient.
- Then there are the "always helpful people" that have no clue. No clue about the dark and messy situation a terminal cancer patient and his loved ones are dragged into. But when these people are open to listen to you, they could be your best help. Because you need to understand: you need all the hands you can get when taking care of a metastatic liver cancer patient.
- Then there are the people who don’t even have a clue that you need help.
The cancer patient doesn’t want to bother others…
- Heather’s father feels he does not want to burden Heather’s family.
- Our father answered to my question:
"what can I do for you father?"
… Nothing special, just do like normal what you are doing…
Unfortunately this "nothing special" or "don’t bother about me" makes palliative care more difficult than it should. I mean: if father says exactly what we can do to make his life better, than we could just do it, problem solved.
On the other hand, I can imagine father really didn’t want to get "special treatment" or more attention than usual. So keep in mind that:
"do what you always have been doing"
could really be the guideline for your palliative care.
We added another guideline: making sure father didn’t have too much pain to handle during his last months of his life.
Fathers are men… and men won’t talk that much about how they feel. Men especially don’t feel like talking…
- about being sick nor
- about how much pain they feel…
Is his liver is worse then he is letting on to believe?
Heather asks further whether her father’s liver is worse then he is letting on to believe?
The answer is crude:
his liver is getting worse each and every day,
there is nothing much to hide there.
Pain is something that you cannot hide: I agree some people have a bigger pain-tolerance than others, but sooner or later, an enlarging liver will press too much on the other organs.
Will you have less time than you are hoping to have?
I cannot answer that question for you. I can only say I would have loved to have spend more time with my father than I did.
When doctors say the cancer patient has only so much time to live, then I suggest you organize your life shared with the cancer patient in that way. Hope for the best but prepare and organize yourself for the shortest prognosis.
Like they say: "live like it is your last day together"…
Self medicating…
Heather says her father:
- said no to chemotherapy
- does self medications with adjusting his food intake
- already lost one kidney
Now her father says he can no longer eat protein.
I suggest you ask your doctor and your father what exactly the meaning is of "cannot eat protein".
Our first reaction was to put father on a diet that would spare his liver. But no diet would cure father. And "quality of life" has little meaning when you can’t eat what you love. So we kept on buying father’s special treat (see New metastatic liver cancer treatment: chocolate?), which was all but "liver-friendly".
We did see an evolution in father eating his beloved food from:
- first eating all he loved but keeping his "fat, beer and chocolate" portions small not to burden his liver too much
- later on eating less because there wasn’t enough space in his abdomen to accommodate a bigger food intake during each serving
- later on eating less because his appetite just became less
- later on adding "astronaut" liquid food to his diet (drinks from the pharmacy containing lots of nutrition) to have some nutrition after all
Father’s digestion system slowly but surely wasn’t able anymore to absorb all the water from his food so his feet and later on his legs became more swollen due to water-accumulation there.
Our uncle had kidney cancer. His water accumulation in his feet and legs became more alarming than father, so he had to return to hospital to – as far as I understand it – get drained in the hospital.
Alarming means that the water reaches higher than the legs, so you need to monitor that.
Read Heather’s cancer story and leave a comment!
I have a question.
My father has secondary liver cancer.
It derived from testicular cancer that was not found in time after a year and a half complaining to doctors. The cancer sack broke and the cancer seeds went up.
Therefore, he got liver cancer as well as prostate, bladder, both kidneys (one which was lost).
He is talking very little about how things are going and he is doing self medications with adjusting his food intake.
He has said no to chemotherapy.
My question is that the other day he had mentioned that he can no longer eat protein.
Does this mean his liver is worse then he is letting on to believe, and that I will have less time then I am hoping to have?
I would appreciate if you could help. I feel like I am doing this alone. My father feels he does not want to burden us. But I need to know.
Thank you for your time
Heather