Deciding...

Thank you to the worried readers who sent notes of concern when it seemed that I had gone AWOL the last week and a half. I have my computer to thank for that. It's hobbled along for the last six months well enough that I could still write blog posts (but do precious little else on it), but last week it turned on me. So for the third or fourth time since the spring I brought it back to factory state and re-installed all my programs; not  sure how long it'll stay up this time. It's a mess of cables and wires to get even a blog post out of it. In addition to that, my iPad has hit Apple's wall of planned obsolescence, if I'm lucky apps will stay open more than a minute before crashing (that will explain my very brief emails of late!) Quite a long way down from working for a tech company ten years ago and having had all the latest tech gadgets at my disposal! 

In my last post I'd mentioned that I had a hospital appointment last Tuesday back with my care team at Toronto Western, I wasn't quite sure what I was going to tell them about the failure to respond to the radiation. In truth, I had decided some time ago but I had to get my head around it.

Radiation is to be the last experimental treatment I'll be trying. I'm done getting my hopes up, experiencing the side effects and dealing with the disappointment when the treatments haven't worked. It's time to get off the wild roller coaster. No more bone scans; there is no need to know where tumours have spread to - I recognize the pain and it doesn't help me emotionally or otherwise to get confirmation of location. Diagnostic testing, outside of regular blood work, pretty much disappears. Far fewer trips to the hospitals. To me, in some ways this sounds like a better quality of life. Pain management continues to be a struggle, however I choose to never again be the first ECD patient to try a new approach to the disease. It doesn't mean I won't sit up and listen if there's a positive new development in research, but I'm not putting myself through this experimental process anymore.

My doctor went through a few scenarios to ensure that I truly understood my decision, along with the repercussions of having signed my "Do Not Resuscitate" order months ago. I felt that we were most definitely  on the same page; it's time to let this take its course.

Some readers may disagree with my decision and you may of course do so. What matters to me is that my daughter and I are at peace with this, and we are as best as I think we can be. It's been a surprisingly freeing experience. 

My doctor at that appointment asked me how I felt about being a palliative patient, a question I'd never been asked before. I told him I'd prefer if it was heading in the other direction, but I can accept that it isn't.

That night I played the unique sentence game. "I'm washing sesame seed oil off the bottom of the cashew nut jar whilst thinking about what the label of palliative patient means to me". Top that one.

I continued to think about my decision over the coming days quite intently. Not once have I thought I'd made the wrong choice; it was an internal thought process about what the journey ahead might look like.

The day after my appointment I received a rather surprising phone call from the organization that provides my volunteer visitors/helpers (let me add that they're four incredibly giving women whom I'm grateful to have the chance to get to know better as we go along. All quite different in personality, the coordinator has done a fabulous job of matching me to these new friends). Might I consider speaking to the group who are currently undergoing a ten week course on palliative care about what a person in my situation might want or need from a volunteer? Quite a coincidence, but then again I really don't believe in those. 

I'm immensely honoured. To think that a group of people who've made a conscious decision to help, and spend time with palliative patients might be drawn closer to this goal - or perhaps pushed away, by what I would have to say is a big responsibility. 

There's more than a hint of irony to this. A year ago it was demanded of me to find a support group to help me be a better caregiver to my caregiver. You might need to read that last sentence twice, I had to make sure I wrote it clearly and accurately.To the point that I was marched off to the local cancer support centre to find said support group. I was being told that I had to be a better patient by the person who'd tell anyone up until shortly before that day that it was easy was to forget that I was ill because of my optimism and positive attitude (and a most defiant - and certainly aggravating at times to my family - mission to doing things for myself whenever I could). A huge point was being missed; I didn't want to be defined as a patient. I wanted to be a wife and mother to the two people who mattered most in my life. It was, and still is, me in here. A person who still wants to do what she can despite growing challenges, to love and be loved and continue to grow intellectually, spiritually and emotionally. And I suspect many others finding themselves in this position would offer the same sentiment.

And here I am now in a position of participating in the process of teaching volunteers how to support we palliative patients. Irony indeed.