Saturday, January 1, 2011

Cottage Dreams

by Michael

I was going to title this post "Cancer Fatigue," but, yuck, not going to begin the year that way!

Yesterday, I went to Princess Margaret Hospital to look for information about an organization that helps provide cottage stays to those going through the cancer experience. I found what I was looking for. The organization is called Cottage Dreams; however, I also learned that to access those cottages you need to be 18 months removed from treatment (chemo, surgery, radiation). So we'll look forward to that in 2012!

While at PMH, searching the pamphlet trays, I found six pamphlets produced by the Universiy Health Network:
  • Cancer-Related Fatigue: Are You Tired From It?
  • Cancer-Related Fatigue: What Can You Do About It?
  • Talking to Your Doctor About Cancer-Related Fatigue (CRF)
  • Feeling Zapped? Learn How to Relax and Use Your Energy Wisely
  • Relaxation Techniques
  • Mental Fatigue and What You Can Do About It
Must say, I love that acronym: CRF. The world can't have too many acronyms!

So, yes, Kate is tired. A lot. It's what I say when people ask me how she is. "She's tired." Now I know how to augment that. "She has CRF."

Kate says she has "chemo brain." Her mind wanders. She forgets things. She's irritable. She is how you might imagine you'd be if you'd slept poorly for three months.

The other day someone asked her if it was worse than being pregnant. "Oh, yes," was her answer.

The CRF pamphlet (see how handy that is) says the fatigue can last well past the end of treatment. Oh, joy. More information we really don't need to know. Looking more forward to that cottage in 2012 now.

Anyway, CRF has links here, here, here, here and here. And elsewhere, too. But that's enough, right?

My favourite quotation (from here): "Fatigue occurs in 14% to 96% of people with cancer, especially those receiving treatment for their cancer. Fatigue is complex, and has biological, psychological, and behavioral causes. Fatigue is difficult to describe and people with cancer may express it in different ways, such as saying they feel tired, weak, exhausted, weary, worn-out, heavy, or slow."

14-96%?

Actually, this quotation (from here) might be better: "Cancer fatigue is a common complaint of many cancer patients and can take over a patient’s life if not treated."

This past fall, there was even a Cancer Fatigue Symposium. (This paper PDF seems particularly good.)

My way of thinking about this has been: This is a marathon, not a sprint. I don't know anything about running marathons, except it's an endurance exercise. You need to manage pain and concentrate on the journey not the destination. And people run them all the time.

Kate's treatment started in early November, and it's going to last into the summer of 2011. Our best guess is final chemo on February 18, surgery 4-6 weeks later (end of March), radiation beginning 6-8 weeks after that (May). Up to 12 weeks of radiation. Probably ongoing drug treatment after that.

Cottage dreams. Cottage dreams. Cottage dreams.

Does anyone know of a cottage we could borrow before 2012???

1 comment:

Rosemary said...

If it's some peace and quiet you are after you are welcome here any time. We'll rearrange bedrooms so you're upstairs and we'll cook really good food for you!

love and hugs,
Rosemary