Sunday 27 November 2011

Time to think and surviving?


Although I missed the opening of the Christmas Market in Edinburgh I have managed to get along to it. The smell of cinnamon, mulled wine and pretzels is wonderfully evocative of Christmas already. I do cheese I admit (and not just the kind that goes in with the potatoes at the stalls). The kind of cheese that gets Christmas baubles for the new family members engraved with their names and in considering buying the Michael Buble Christmas album. I know, but if it lifts the dark days of mid winter and makes someone happy (and me!) why not?

And this year I would recognise all my emotions are close to the surface. My grumpy fuse is shorter than usual I confess, my vulnerability makes me over sensitive to hurting feelings at times too and of course tears aren’t too far from the surface on occasion. Like many of you I’m sure, its not the big occasions that evoke tears often, it’s the simple things that touch me. Kind words and gestures and well-timed hugs are the best. But not ever the Antiques Roadshow (;-)) or that John Lewis advert. And when Russell and Flavia left Strictly last week that was an eyelash in my eye that’s all!!

Sometimes the things that upset me most don’t just move me to tears alone, its anger too amongst the upset. On more than one occasion this week I have seen the impact of secondary breast cancer and it’s made me think about how our job is a long way from done. And that survival statistics are truly encouraging but also hide a huge amount of unmet need and suffering in its truest sense.

I remember my Dad’s palliative care specialist doctor speaking to me when I met her at his bedside as he was dying. She was a very kind and skilled professional. She took time to talk to me when she heard I had just finished cancer treatment myself. I expressed my grief at losing my father, especially at this time and also how his dying was making me doubt my own survival. She expressed her surprise and pointed out that my Dad had survived for six years after his diagnosis after all. A success of five-year survival you see? From my perspective I was 38 with the previous expectation of living to a ripe old age but certainly long enough to see my children grow up. I don’t remember my reply-I’m not sure I found one. And several years later when a good friend died of breast cancer 11 years after her diagnosis I reflected she too would have been a survival for ten years success story. But her own children were still at school when we lost her. Success? I don’t think so.

I know the question has been raised about how we collect the data to at least ensure we understand the prevalence of secondary breast cancer and indeed all other cancers too? No answer has emerged yet. But is this really one of the “Wicked” questions that defy our current thinking? I am reminded of the quote below
“If I had an hour to solve a problem and my life depended on the solution, I would spend the first 55 minutes determining the proper question to ask, for once I know the proper question, I could solve the problem in less than 5 minutes.”
- Albert Einstein
The thing is for people with secondary cancer their lives are dependent on this but at the moment the reality is fractured care pathways, poor support and we don’t know how many people are in this situation. My sense is at present we are not trying hard enough to determine the right question or to answer it. And until then the real level of need will not be known nor met. Frankly they all deserve much better than this and all of us working in this field need to ensure we keep asking the right questions of the right people. And demanding the answers too.

Yesterday I attended the first day taster session of an action learning set. It was such a valuable time, creating for me some time and space to think about my work and purpose. An article used to stimulate discussion described the tyranny of multi-tasking. As the consummate multi tasker, especially now I use social media more and more for work I recognise how full my head is often. And in recent months my body’s way of telling me to stop is to bring on a migraine. Travel has often been the culprit; I suspect the final straw for my overtaxed body. It strikes me that my blog is an opportunity to reflect and step out of the normal rushing to check in with myself. I recommend if not this, then something similar to help along the way with your own challenges, whatever they are. You can also get a perspective over time too. Whenever we are in the midst of something, its easy not to recognise change for the better or indeed worse. As I said before-blog therapy-you don’t even have to put it on the internet! But it may help others too if you do.

Reasons to be cheerful:
It’s a slightly calmer week ahead and at the end of it we are going to see my stepdaughter and her two lovely girls. I love the trip before Christmas- its always really resonant of the season and a really special time with them all that we treasure. One year it overlapped with the final of X factor. So we were lined up watching the show, cheering on our favourite. The finalist song started and the girls call out that’s the song from Shrek! I am still recovering… yes you guessed it, it was Hallelujah by Leonard Cohen (my hero you may recall…). Simon Cowell you have much to be forgiven for. Not least for having to explain (or trying to duck it) some of the lyrics to those far too young to be interpreting such things! Fingers crossed for this year….

.

No comments:

Post a Comment

Scanxiety?

  It’s not peculiar to cancer but waiting for results can be the worst time of all. Last week I had really quite bad scanxiety. Yes it’s so ...