Sunday, October 11, 2009

Are You Welcome in the Cancer Club?

A good friend and author has a great blog called Everything Changes. She recently posted a blog about young adult end of life issues and grieving. As many of you know this is an issue close to my heart. Her blog spurred a great conversation and there are many good comments. Check out her blog to see all the comments.

Here is the comment I made to her post.

I am an end stage cancer patient that has surpassed my “death day” expectations several times, but I know my time is near. I don’t know if it is weeks or months, but I listen to my body and I feel it shutting down.

Like many others that have commented, I have had a lot of support from friends both in and out of the cancer community throughout my treatment, including health professionals. Once treatment stopped working and was told there was nothing they could do that would be curative. I was encourage to do treatments that could give me more time, but would most likely make me very sick and weak. I decided that I wanted to focus on quality of life and have my last days me spent the way I wanted instead of being debilitated. Many people saw this as giving up, including my health professionals. I believe that especially for young adults the community focus is fight, fight, fight and feel that young adults are too young to die. I did not give up, I chose to live. My timeline is just shorter than most, but I was determined to make the most of everyday.

But the reality is that I am dying. I have noticed that many of my friends have pulled back as I have gotten sicker and do not want to talk with me about my feelings around dying and end of life issues. There have been a few exceptions in this which I will talk about. There are very few resources out there to help a young adult in my situation. I wish there was a guide book for the patient and their loved ones and for the professional community that discusses the issues they face and suggestions of what they can do to be supportive.

I go to a young adult support group once a month. This is made up of young adults with cancer that range from in treatment, just finished treatment, in remission for several years and me. When I first joined this group I was in treatment and found a lot of support from those who have “beat” the fight as well as those that were experiencing the side effects of treatment. As I got sicker though I felt like “Debbie Downer” whenever I talked about what was going on with me. As the months have passed I have been faced with much different issues than the rest of the group and wondered in I should stay in the group. While I got a lot out of their support, I did not want to hinder their own journey. I brought this up at a meeting and was unequivocally told that they wanted me to stay in the group. They said that it was a privilege for them to me to be there in this stage of my life and while they did not always know what to say, they wanted to support me. We have also talked about how they wanted to be notified about my health status when I could no longer come to group and ultimately about my death. I am so thankful for this group and the support they provide. I wish everyone had such a group to be a part of.

I know if is hard for cancer patients that are going through treatment or even those that are in remission to hear about someone that is having a different outcome. I realize positive outlook is important during treatment and many can not deal with the possibility they will not survive. However, as other people have written, the cancer community as a whole focuses on prevention, treatment, research and cures. They will quote the numbers of patients that are being diagnosed each year and the numbers of those that are dying, but what are they doing to support those that are dying and their caregivers?

It is hard for me when someone says that a person has lost their battle against cancer. Someone told me recently that I am not a survivor, because I will not survive cancer. I hate labels like survivor or victim because they have so many different connotations. I am a Survivor. I have survived the last two and half years of chemotherapy, radiation, countless side effects and being told the treatment has not worked. I am fighting to the end and will never give up. As the Lance Armstrong Foundation motto is LiveStrong. I am Living Strong, and I am Dying Strong.


Melanoma said...

I know a little of what you speak. Not because I'm dying. But because I am living. I am NED after a year of treatment for Stage IIIa melanoma and a year+ of treatment for a secondary disease.

When I was in treatment, I was a tweener---not a "young" person with cancer, not an "old" person with cancer. I fit no where in anyone's support program. I found one group for women, but it was mostly breast cancer folks and odd-ball cancers that also fit no where.

My point is---I'm not doing treatment at the moment either---yet people think I should either be "cured" or "in treatment of some sort". I'm not doing either, I'm waiting, getting scans every few months, blood work. But there isn't much more I can do until it shows up again. People don't get that there is this limbo-land I can be in. Chances are, the cancer will come back. Just a matter of WHEN.

When my cousin decided to stop chemo for her melanoma, I couldn't argue with her. I cannot fathom telling someone they HAVE to have chemo. Like any other life-choice, it ought to be up to the person.

I wish you well, I hope you have the best quality of life in the time you have left. I am happy you chose to do what is right for you. THAT is the important part. It irritates me that I'm going to lose another blog friend, but that's my deal, not yours. Every time a friend dies, it scares me a little---maybe I will follow in the same path...and I think that scares a lot of people, even those not Dx. It irritates me as well when people say "X" lost their battle with cancer. No, they did not lose the battle, cancer just has so many more weapons that sometimes, our bodies just wear out, sometimes the treatment options we have are inadequate. We fight. Hard. Sometimes, it can't be beaten.

Thank you for your insights. Thank you for your honesty. May your journey be easy.

Maggie said...

WOW, powerful words. I don't know your age, but I too have cancer and at age 45 consider myself to be a young person. I am still in active treatment, but my at my last visit with the oncologist, I heard aggressive cancer and quality of life....

I want a good quality of life and am trying to have that while in treatment. But I would be foolish to not look at the other end of the disease, death.

I want my family to know I have done all I can - and so have they! I think you are brave and wonderful and perfectly normal. You must face these things, how can you not? I will send my good energy your way and hope for a peaceful transition for you. As you peel away each layer, I wish you peace and contentment.