Hi all,
This has proved a safe and productive place to see support. My last living sibling is much older than I, but we have been very close over the years. She had colon cancer surgery earlier this year, which was successful, but decided after a short trial to forgo chemo. She is struggling mightily with this and many other changes in her life and is terribly sad and bitter.
To say that this has been stressful is an understatement. I just learned about her stopping chemo on Thanksgiving and learned about how down she is after Christmas. This leaves me with what may be a long, slow painful process of watching my last immediate family member, and best friend die.
I spent my trip home from seeing my sister frustrated, grousing about everything from slow lines in stores to drivers to my own limitations. I alienated other people in the process, though my loving husband definitely gets what is happening and is very understanding.
I have a wonderful life, a beautiful, clean, and warm home in a lovely neighborhood. I have a PT job and other work and am blessed that my husband provides benefits that my job does not. I have treatments that help, even if they will not heal what ails me. And, of course, I have this group as well as a church family.
All that said I am profoundly sad and don't know quite what to do other than to leave my sister to work through her own issues and to be there if and when needed. I have a life that I've carefully constructed to keep my own health, but I know what a toll the deaths of my other siblings took on me and am concerned about the impact of this stress.
If anyone has any advice I would welcome it, prayers as well. Thanks for listening.
There are many options to Chemo in most situations I tend to believe. She may be able to find a cancer treatment center that would work better for her. Personally I would try everything that I thought sounded reasonable. Finding the doctors to assist in that is often difficult and frustrating.
Prayers Sent for both of you.
I am so sorry. I have a sister who is very close to me and just to imagine losing her causes great distress. So I totally understand how this would stress you out. I don't know what else to say, only that I send hugs,love and prayers for strength and hope your way.
sjogirl,
My dear husband (my best friend) underwent his first chemo treatment this week. I was scared to death, but I think it went well. They infused two powerful chemo drugs into him - one at a time. One of them is Platinum based.
This treatment that he is getting is "out of the box", in that he is part of new treatment that is being developed and pioneered by MD Anderson. New territory and the wide unknown. My husband has a very aggressive stage four cancer and last April, when my husband was first diagnosed, his doctor told him that he had to do something about it fast or he wouldn't give him more than 6 months!
Horrible words to hear from your doctor.😞😢. Well it is past 6 months now, and he seems to be going strong. He has had surgery, hormone shots, prednisone, and expensive oral chemotherapy. ($10,000 per month and our insurance approved it, thank God!!! It only took 3 weeks of fighting for him and I told the insurance company that when someone says you only have six months unless you fight this - 3 weeks can seem like a lifetime!
He is now doing IV chemo and we feel blessed to be able to go to MD Anderson (we live in Illinois) and that our insurance covers it - but always a struggle. I am praying for a miracle but may have to be satisfied with a few more years of life😥. I hope for so much more! I hope. I hope.
My heart goes out to you. I think I can begin to understand your fears but perhaps not completely. Try not to give up hope and I KNOW how hard this is, or at least I think I do. Please forgive me if I presume too much. I may be ignorant and blind in my grief. I too suffer from bitterness and I think this may be part of the grieving process.
Why my family? Why these GOOD people? Why?
You said your sister's surgery was successful? This is good. May I ask why she is stopping the chemo? Did they say they "got it all in surgery?" They couldn't get all of my husbands and told us that the most we can hope for is a few good years. But I hope.
Sending you "mental" hugs, prayers, and hope.
Kathy
I've nothing to offer aside from my support and empathy. :( Hang in there, Sjogirl.
Really, SjoGirl, you can 'be there' for your sister, if she asks for you. I take it she lives in another city. So most of the time it will be internet/telephone communication.
I wonder if your sister knows something about her condition that she doesn't want to share, SjoGirl?.
She may be reading information from cancer support groups. More and more people are rejecting chemo/x-ray after some cancers. There's always controversy.
You know what you will face at some time in the future with your sister, SjoGirl. You are beginning now to prepare yourself, which is very wise. So keep us posted.
Hugs and prayers for you and for your sister, Elaine
(((hugs))) I personally am a believer in going to therapy when under excessive stress. This might be a good time for you to consider going. I also don't really care for long term therapy....unless it is a very extreme situation. Perhaps if you've been in the past, you might consider a few visits. Or you can find someone to to go for a little while to help you through this difficult period of time.
Your sister has every right to refuse chemotherapy. Surely chemo has helped many cancer patients. This is true. But, I also believe that it absolutely is NOT a one size fits all situation.
You must read this: I really enjoy this website and FB page I go to called simply "Chris beat cancer." I think about ten years ago, Chris, while still in his twenties was diagnosed with colon cancer. I believe stage three. He had surgery, but something told him to refuse chemo. Instead, he went to an alternative doctor. He took herbs, juiced, became a vegan, drank a lot of pure water, etc. To everyone's shock, the cancer went away and stayed away. Today, he is a semi vegan...very rarely eating meat (not sure why he eats a small amount once in a great while). On his website and sometimes on his FB page, he has people give testimonials on how they cured their cancers without chemo. Yes, it is controversial. I have discovered that chemo, while helpful for some, is not always helpful. And there is even a test out there in the world, that can accurately predict who it is likely to help. They affectionately call it the "greek test." I've watched testimonials from some folks with very serious stage four cancers get cured without chemo. It is shocking. Then again, I have a friend who had breast cancer, who absolutely got cured using chemo. Again, we are all individuals.
Chris has some informative videos and interviews on You Tube. There is one called "What every cancer patient needs to know." And another on nutrition vs. chemo. Plenty more of interest. I bet your sister would love them!
I LOVE this book (different author) called "Spontaneous Remission," something you might consider reading. None of these folks in the book had chemo.
Anyway, take extra good care of YOU. Consider the therapy, but sometimes it's also the little things....a date night with your husband, a pedicure, going to see a movie. Be conscious of the fact that you need and deserve some extra tender loving care at this time.
I may have a slightly different take on this situation, and I in no way suggest that others haven't better or more practical, definitely easier, suggestions, but here goes.
Primarily I'm deeply sorry for the situation in which you find yourself.
You say your sister is older, and I'm assuming has led a successful and independant life. She has recently dealt with what was probably life altering, and particularly body image altering, major surgery; which I'm sure she considered intelligently and weighed all options. Her considered opinion, having tried a limited trial of chemo ( I'm guessing from your post) that she doesn't want to go that route, and is now dealing with what could be the end of her life; of course she's working through anger and depression issues. You don't say if the chemo is an extra assurance, having had "successful" surgery, that was recommended as a safeguard not a primary form of aggressive treatment.
(OK, this is where I'm probably going to get gasps and arguments)No matter how it impacts on you, she is entitled to this choice.
As difficult as it will be for you, your well crafted lifestyle based around your own chronic illness, and your grief and loss, try to support her. You've already said it
Quoteto leave my sister to work through her own issues and to be there if and when needed
For your own health and safety, try to maintain your healthy lifestyle, optimize whatever you can, be it meds, diet, supplements rest, exercise, quiet time, meditation, prayer, counselling; whatever works for YOU. Unfortunately you should also prepare for some deterioration in your own health, it's unavoidable when dealing with such immense stress. Does your employer offer the opportunity for leave for family crisis? You've already indicated your husband's benefits will help, but I'm wondering about time, without the threat of job loss due to absenteeism. Being prepared in advance can actually reduce the effects of stress quite a bit.
Meanwhile, you do have my prayers, and I'm sure the support of this website, we are after all, community!
People have reasons for stopping or opting out of chemo.
My step-sister, a nurse, had re-occurring cancer after mastectomies, etc. Eventually she decided enough and opted to take her family to an island for a vacation and let things take its' course.
A pathologists who specialized in oncology opted out and "let things take its' course".
My mother when Dx'd unexpectedly, I asked the pathologist "What would you do if this was your mother?" The Dr. said he would leave her alone.
So there are often solid reasons for choices and they are beyond 'our' control.
My cousin has had mastectomies and thyroid cancer.. so I call her and check in. I have to steel myself as sometimes it can be draining for me. She tends toward the drama and negative (always has..lol) But, with my experience with loses and doing Hospice with Mom, I talk (mostly listen) and then interject/redirect conversation to fun times family shared.
One way or the other we will all pass on.
When we focus on what will come in the future; we can miss the blessings of the present.
I am so very sorry that your sister is sad and bitter. I hope she can perhaps find help for that?
The holidays (travel) take a toll on us, add to that the situation with your sister.
Life will settle down soon.
I am going to answer your questions about the same as the others but probably in a little different way.
Everyone has to deal with their own mortality and illness when it happens. Your sister is older than you and has gone through the surgery I think your said. It may be that she doesn't feel that great now and the cancer may be the type that the doctors feel is hard to kill no matter what drug or radiation they use.
She may not want to do that "fight" as it is hard to do the chemo and then if it doesn't work she will still have to deal with the process of dying. Sometimes the doctors will give short courses of chemo or else some radiation because there are times it helps decrease the pain, etc.
Ultimately she will probably have to be under the care of hospice and this is usually a good help in dealing with the pain and illness of the last days. It is hard dealing with death and as a sister you will have to get your head in the place that processes the situation and your emotions are going to be roller coaster.
With the autoimmune disease this stress is going to be hard on you as you very well know. The best thing you can do is get your rest and maybe talk with someone (minister, whoever) who can give you some things to help you deal with the stress.
As a nurse who worked with the elderly the later years of my career I worked with a lot of death and dying. I always felt it was a privilege to help someone to leave this earth without pain and with a body that was in as good as shape as possible. With nursing one wants to keep their patient clean and free from bedsores, etc.
Dying can be a marathon for the patient as well as the caregiver and relatives. AS my husbands caregiver for quite a few years of illness, his last 15 months were truly a hard core marathon and both he and I got really exhausted from the amount of work it involved. This was 2 1/2 year ago and I have not really recovered yet from the stress. So, I am hoping that you can help prevent some of this. If you are going to be a caregiver, I hope that you will only do it a small amount of time. Just take care of yourself and I will be thinking of you. Irish
Thanks all for your thoughtful and helpful comments. A few thoughts/reactions:
1. The docs originally said they got everything, but my sister's blood work suggests that there is cancer somewhere in her system. I am actually not sure that she understands this or she may be choosing not to acknowledge it.
2. She was on a very low dose of chemo, pill form, that she was to take off and on for six months. She is very medication sensitive, like me, and just could not take it.
3. My niece said from the beginning that we had to honor my sister's wishes. I agree and came to terms with that logically because I worked with elders for the past seven years. I watched people make very difficult decisions about their health and lives, some choosing to forego treatment. My former boss used to speak about "doing death well" saying that providing comfort and support at the end of life is one of the highest callings we can follow. I understand intellectually, but the emotional part when it is your own family member is challenging.
4. Yes, therapy might be in order a some point. Right now I've decided to further enhance my own self-care and approach to life. Starting today I began focusing on the positive as much as possible, decided to be sure I'm getting exercise, danced in the kitchen with my husband after dinner (when a great slow song came on the radio) and hope to spend 1/2 hour reading (less TV thank you).
Thanks all, your support is always appreciated and even more so in such times.
I wish the happiest of new year's possible to all of you.
I hope you don't mind my saying, but , in the midst of this serious and heartfelt discussion, " danced in the kitchen with my husband after dinner (when a great slow song came on the radio)" was so delightful, spontaneous and uplifting, that it made my day!
Since it's only 6:25 AM, I can thank you for setting me up for a good day no matter what!
Quote from: Linda196 on January 02, 2017, 02:26:47 AM
I hope you don't mind my saying, but , in the midst of this serious and heartfelt discussion, " danced in the kitchen with my husband after dinner (when a great slow song came on the radio)" was so delightful, spontaneous and uplifting, that it made my day!
Encore.. applause!!!
(Sometimes I do a few steps when a great song comes on while grocery shopping.. Others "Dancing with the Stars".. me: "Dancing with the Cart"lol)
Linda, Gald that I made your day! SjoGirl