Thursday, August 02, 2007

An Unwanted Journey: Day 0616 - Never the same

It brought me to tears, tears of empathy, tears of recognition, tears of sorrow and grief. I just watched a video entitled, "From Cancer Patient to Cancer Survivor: Lost in Transition" available on Google video here.

I've read stories from other survivors, and they are helpful (see, for instance, the collection of stories from the Lance Armstrong Foundation). I've browsed e-group discussion threads where people with similar side-effects and after-effects talk about their symptoms and problems. I've mentioned my continuing problems with oncologists and family physicians. But, unless you've been there, you'll never realize how depressed you can become, how utterly alone and lonely you feel at times, how changed you are. But in the video, you hear and see people talking like this:

"Once you've had cancer, you have cancer for a lifetime. So you learn to deal with it every day."

"I don't have the luxury of having an ache like everyone else."

"It's a long, long grief...you're not going back to your old life."

"Cancer survivors often have symptoms that go on for years...cancer is a chronic disease where the treatment may be over but the problems persist."

"I remember the day of my last treatment...I was so overtaken by grief...I felt like a warrior without a war...what about my feelings...what about my life?"

"...my sexuality has become an issue...I quite frankly wish we didn't have this problem, but we do."

"My neuropathy from the chemo, my colitis from the radiation...it goes on."

"The person who has experience a serious illness like cancer...has very special needs."

A survivorship care plan is one of the recommendations proposed in the report. Most of the information contained in the sample plan is comprised of medical details, all of which is helpful and absolutely necessary to feeling somewhat in control.

But the psycho-social and financial aspects of survivorship plans strike me as inadequate at best. Loss of work and income, loss of purpose, loss of social contact, loss of opportunities - it's truly tough. Yes, you can transform your life, and that is definitely the direction in which one's efforts and focus must be directed, but there's nothing easy. You'll never be the same.

1 comment:

LIVESTRONG said...

Don,

Thank you so much for bringing survivorship issues to your readers. The emotional, physical and practical concerns of post-treatment survivors are often misdiagnosed or dismissed by healthcare professionals. We are making real changes on this front. Thanks again for your blog posting. Please let us know if you need anything: www.livestrong.org/survivorcare

Wishing you continued courage and strength!

-LIVESTRONG