Sister Stage IV

CarolsSister

My sister is Stage IV and extremely ill. We, her family, are trying so very hard to give her whatever help and support we can but its very difficult.

The cancer is in her bones, liver, bladder, lungs and throughout her body. She has had repeated stents in her one ureter. Both hips replaced two years ago. Dry unproductive cough that wears her out. Severe unrelenting pain in her back and legs, she takes narcotics for that. She is so weak and mostly sleeps. She eats little and has lost so much weight. She is in deep denial, refuses hospice or other help. When she was still able to get out of bed by herself, she often fell because she is so weak.

She has recently found new lumps under her arm and high on her chest. Now she has a hole in her mouth that goes all the way to the bone. Her doctor says she should not worry about them.

Her oncologist just keeps saying he has other drugs he hasn't used yet and that she should just trust him. He admits that the tumors are bigger with each visit but poo poos her husband's concerns. He will not give her or her husband a straight answer to any question and her husband feels lost. I think all he cares about is that she's breathing so he doesn't have to admit he failed. Changing doctors or getting another opinion is not an option she will consider.

This week, she is starting on yet another chemo drug.

Is there any way we can learn what to expect in the near future as well as long term? How can we find out what her life expectancy really is and how to help prepare her for the end? How will the end come? All at once or just this slow miserable decline?

Any internet links would be greatly appreciated. We have all searched repeatedly but never really find the kind of detailed information we need so desperately.

I'm sorry this is so long. I hope people here will speak frankly and honestly because we all feel the time is long past for ignoring or pretending its not really so bad.

Anonymous

CarolsSister,
Im so very sorry to hear about your sister...you are a wonderful sister to her.....
I dont have the answers to your questions, but my first thought while reading your words were that she needs to see another Dr. for second opinions and such....its very unfortunate that she is against that idea....
I pray that the Dr. she is seeing does finally hit on the correct drugs to help her....
My prayers are with you and your family.....
Hugs
Jule

CalGal

Hi Carol's Sister -

I'm sorry to hear what your family is going thru ... it's a difficult and painful path ...

For background to my comments, let me say, I was dx'd with mets in 12/2005; 15 mos after my initial dx and since the mets dx, have been very aggressive with my treatment. At this point, I'm NED! My initial dx, was 4 yrs after my Mom passed due to bc mets.

My mother was dx'd with bc at age 46 and had a 13 yr off and on struggle with it, the last two years with mets and finally passing due to bc mets.

I am not one to put my blind faith in doctors; but prefer to do my own research and have a collaborative process. I wished I would have done so for my Mom ... It sounds that it is well past time for your sister's onc to use the drugs that are available ... What is he waiting for?!

It sounds that your sister's body is having difficulties in a number of areas ...

Since Carol is in denial and won't speak with hospice or consider a 2nd opinion, my recommendation is that you contact hospice and try to get an outside opinion on your own or do some internet research ... Hospice is the most caring, giving and loving organization I've ever seen. They were absolutely wonderful in assisting us with my Mom as she was on her final decline ... I imagine they would be able to give you information on keeping your sister comfortable and pain-free as well as providing assistance and/or references to you ...

When my Mother's health went on the downward decline ... and I'd fly north from So Cal every weekend, the decline each week was shocking ... she lost more and more capabilities and got weaker and weaker ... and that was how I knew that the end was coming. It was difficult ... At the end, I gave my Mother morphine by the spoonful ... Ensure, a liquid protein kept her alive the last few months.

I was a realist and at a certain point, realized that she would NOT be getting better again ... For me, I called family and friends, advising them to visit sooner as later would not be a visit ... and while I'm the "positive type", I was surprised a few people who tried to be reassuring ... (which at a certain point is just denial in my opinion).

Do what you can for you, other family members and her, within her wishes. I found it very helpful to discuss my Mom's illness and pending death with a therapist as well as read some books on death and dying ... I was fortunate in that I had a great relationship with my mother and didn't have those unresolved conflict issues that are difficult at these times ...

My best to you during this difficult journey ... If you'd like, feel free to pm me ...

CalGal

CarolsSister

Thank you both for your thoughts and good wishes. This is such a horrid ordeal for all involved and my heart goes out to the posters on this and other boards.

I do agree that hospice is an excellent resource but her husband does not want to go against her wishes.

I'll keep looking for links on line and hope to find some answers.

Member_of_the_Club

You can get hospice involved without stopping treatment. Do you think you could pitch it to her that way? Hospice will look out for her comfort in a way that her doctor cannot. Hospice can also be supportive of the needs of the rest of her family, something doctors cannot do. At the same time, she can continue to see her onc for medical treatment. So she is not declaring that she is done with treatment if speaks with hospice.

The doctor may be waiting for her to say that she is done with treatment. She's not saying it and he's not raising the idea. My previous onc was like this with a family I know and they missed out on some important conversations (what to expect? How to relieve pain? ).

Another idea would be, if she isn't willing to speak with hospice, to bring in an oncology social worker. Such a person would be trained to help your sister focus on what she wants and needs and to ask for it. Most cancer centers have oncology social workers who will work with patients free of charge. Good luck. I hope your sister gets some comfort.

roseg

I think MemberoftheClub has good ideas here. A counselor or social worker might be able to help your sister and her family work through their issues and get her care that helps her live a better quality of life.

IF they will not consider this I want YOU to seek counseling. Having someone to talk to about this could help you to be the best sister that you can be and I know that's what you want to do.

kathysugarland

Your sister is lucky to have you and a supportive family to help her. I will pray that you will find the help needed to give you the answers you need. Find a new doctor that will give her straight answers. You have to trust and have faith in your doctor. Hospice can give your family some direction. Call them and explain your situation. God has a plan for all of us. Bless you

Hope_M

I just wanted to say that my heart goes out to you and to the entire family in this difficult situation. I don't have any answers really, but it is hard to know what the doctor is really saying and what your sister and her husband are hearing. Their perceptions may be clouded by their emotions and perhaps some denial.

It sounds as though the cancer is having its way with her right now. I'm not sure that there is anything that anyone can do, even if she changes doctors or treatments. There are many miracle stories out there--sometimes alternative treatments or trials hit just the right combination and someone who has a poor prognosis does survive. I certainly hope that your sister finds that combination.

Hugs to you and best wishes,

Hope M.

Hope_M

I'm sorry, but I just re-read your post and saw that you are really asking for end-of-life resources and descriptions. If anyone will be disturbed by my frank descriptions of some cancer deaths below, please do not read any further, as I don't want to upset anyone.

For an unflinching view of the physical process of death, try reading Sherwin Neuland's book, How We Die. Dr. Susan Love's book, The Breast Health Book, has some more information as well, if I recall correctly. Elizabeth Kubler Ross' "On Death and Dying" is the seminal work on the psychological stages of grief and is very helpful, if you are not familiar with the four stages (denial is one of them, as are anger and acceptance).

Hospice workers might also talk to you to help you know what to expect near the end as well. My personal witness includes the death from cancer of several people, including my mother in law. If you want to know more about how their deaths occurred, then keep reading.

Two women died within weeks of sudden downturns. They seemed fine, then one developed stomach pain which turned out to be metastasis and she went very quickly. The other one of them had difficulty swallowing, and was hospitalized for about two weeks, during which time her heart began to race uncontrollably. She went down very quickly and was unconscious at the time of her death from heart failure. By the way, the inability to eat solid foods is common when the end of life is near. One other friend had a slow decline for about two months, with moderate pain in her stomach, which was distended from fluid. Many times cancer causes the body to produce fluid which builds up and has to be drained. She felt mainly deeply exhausted at the end.

My mother in law had metastatic lung cancer in her kidneys, vena cava, etc. By her death she had tumors erupting through the skin near her spine and had lost the strength in her legs. The skin tumors were only a problem because of the pressure on them of lying in bed. I would describe hers as a year of slow decline in function and mobility, ending with about a month of being bedridden. Her pain was moderate and well controlled with morphine at the end. Hospice helped for the last week and she died at home.

Near the end she appeared to see and converse with her mother, who had died years ago. (This is often a sign that the end is close.) Her last few days were peaceful and she slept a lot with the morphine. She just stopped breathing after a few minutes of breathing with what is often described as a "death rattle" in her chest.

I think that usually with cancer death there is a decline of some time and a relatively quiet actual death. Many people are on morphine to the extent that they sleep or are unconscious. Pain levels really vary quite a bit.

I hope that this has helped to answer your questions and has not been too upsetting for anyone reading it. I know that your sister is tired. She seems to be remarkably strong. Blessings to her and to you in this time.

Hope M.