Tuesday, March 16, 2010

Home again -- and prognosis

Coming home from the hospital yesterday was a bit weird. I was alone for a few hours and felt a little lonely. In hospital you feel like you're suspended while whatever you're there for is being done -- and you're certainly never alone in the crowd of nurses and visitors and patients and doctors. Even if you have no visitors, there are always people around. Plus, someone brings you a meal three times a day, which motivates you to get up. Somehow the fact that I am now officially palliative (12 months or less to live) didn't completely sink in.

At home, I can think about the new circumstance more, but I'm still intellectualizing it and trying to control it rather than feeling it. Or at least trying to control the few things I can control. I like to look at it as strictly a bureaucratic necessity. Once the paperwork is done, everything is in place for the future, and some extra things kick in, including some insurance benefits.

Today I met with my new palliative care case manager and my very nice nurse, and it looks like the locally available services are pretty good. I don't want to die at home, preferring a palliative care ward, but at some point I'll probably be on a waiting list, so it's good to know that I can get an increasing amount of help in my home when my condition deteriorates, and already I am setting up home visits with a doctor. Apparently there are some free complementary treatments available, like Reiki and massage, which would be nice. They'll even bring in a hospital bed for free.

I gave up the option of the rehab hospital because it was going to take a long time, but I'm on a list for outpatient care, and a physiotherapist will also come to the house, which may be enough to keep me on my feet as long as possible.

Last time I came home from hospital, I had pretty much recovered from radiation side effects. This time my only side effects seem to be extreme fatigue, which is making me simply want to lie down all the time. And I'm still quite dizzy. My legs feel weaker, and that scares me.

I'm planning a vacation to B.C. with my mother and a friend. What a crazy thing to do. Who knows how I will feel in six weeks. But it's fun to plan, especially something expensive (I want to fly first-class). Anyway, that's what cancellation insurance is for, and that's what money is for, and I can't take it with me.

Pollyanna moments:
  • Last week I got so frustrated with the poor Internet connection in the hospital that when Geri suggested sneaking me over to the Eaton Centre to shop, I went straight to a phone store and bought a wireless modem turbo stick. Took a one-year contract! And had proper Internet (mostly) for the next four days. Who knows, I may need it again if I land back in hospital. Spend, I say, spend!
  • A friend raked my garden this afternoon -- tulips are baring their heads (little do they know what the squirrels have in store for them).
  • A beautiful, peachy bouquet of snapdragons from another visitor!
  • I'm sleeping like a baby, pain-free.

5 comments:

dixyan said...

Like the "pain-free," like the "sleeping" and LOVE the holiday idea!

Pollyanna said...

Hi, I'm a 46 year old nursing student in Colorado, interested in Oncology. I got directed to your blog by a Canadian friend who sometimes works with chronic illness policy. It's been such a gift to read your perspectives and your thoughts, your Pollyanna moments, and your feelings through the process. I see such a small window into people's experience on an inpatient unit.

Thank you for writing this.

Cynthia Brouse said...

You're welcome, Renee. It's nice to know the blog is helpful to you. And surprising, too!

Cate said...

Cynthia, I'm the Canadian friend -- the one who met Robin at a tea party last week. (Also a friend of Suzanne B, which is how I got here in the first place). I find your blog so thought- and emotion-provoking. Thank you for sharing this experience with the world.

Cate.

Cynthia Brouse said...

Nice to finally meet you online, Cate.