Running From Cancer

I haven't written since November last year, the muse left me big time.
In my last post I mentioned that I'd been invited to speak at a Kidney Cancer Information Day in Birmingham and that a blog would follow...it didn't. I now feel I've left it so long it's hard to give an accurate account of the day itself. As I initially wrote this blog retrospectively I suppose it's a trait of mine. Those issues which I find hardest to deal with I tuck away and leave a while before addressing or in the case of my blog, sharing.
The last time I wrote concerned the start of my new business which has been largely inspired by running and yoga which I attribute with my recuperation. Since then I have begun a new blog Sew Fit, Sew Healthy This has been a conscious effort on my part to distance myself from the C word and focus on the F word, Fitness.
The problem is that when I log into the new blog (as I just have) there is An Unfashionable Cancer reminding me that I need to catch up, write, update.
The Kidney Cancer Information Day was definitely a turning point. It was an excellent event put on by The James Whale Fund for Kidney Cancer It is this charity that has given me so much advice and support and so I was more than happy to give an account of my kidney cancer story on the day. However, the impact of preparing for and then actually speaking out loud had a profound effect on me.
I couldn't find the positivity I wanted to relay, my experience had been - in my opinion, awful and hopefully not common amongst kidney cancer patients. Other than thanking the Fund for their help during my illness I just wanted to apologise for having shared this tale with the audience, I even gave a disclaimer before starting! When those assembled then gave me a round of applause I just wanted to cry, I wanted to ask 'Why are you clapping, this isn't how it's supposed to be'. I just felt awful.
Afterwards, I spoke to a few of the patients there, only 5 others attended which again made me so sad, despite all the hard work and effort the Fund puts in this cancer and others like it are just not getting recognition - in my opinion. Those patients who had been through or were still being treated for kidney cancer each had similar stories of poor care, lack of information, isolation, lack of medication, no access to support etc.
When I left the hotel that day I just wanted to run, literally run away from my association with kidney cancer. I had an overwhelming feeling of 'what's the point?' I felt guilty for having shared my story rather than pride in getting up there which is why putting it into words has proven so difficult.
The longer I left it, the harder it became until the urge to put kidney cancer firmly behind me in every sense grew and grew.
This was made even harder by another action I took following the Information Day. If nothing else, one of the pieces of advice I took and followed through with was to pursue my medical records. In light of what I went through maybe I'd find answers there. Bad move.
I could write a huge essay on those findings but will sum it up as succinctly as I can; Multiple wrong diagnosis recorded, drug administration incorrect, drugs given inadequate, pain levels recorded as 0 when at the time they were off the scale and it went on. The most infuriating letter was one from the consultant to my GP afterwards which managed to get the size and grade of my tumor wrong despite histology reports to the contrary. It is a complete farce.
You may ask what I've done with this large document of information which adds insult to injury - literally. I've shoved it to the back of a cupboard where it can stay until I can face reading it again.
And there it is. The reason I want to run from cancer, the reason I want to focus on running and fitness, the reason I haven't shared these feelings earlier. What's the point.
Until 'Cancer' is recognised across the board with equal access to funding, support and in general help then I can't keep banging on about kidney cancer. Along with other lesser known forms of the disease it just isn't dealt with using the same gravity as those ranked higher and that's the truth.
In my talk back in November I included the experience I'd had in Clinton's card shop - not one I'm alone in having. When offered the obligatory pens for certain cancers I'd reacted by saying, When you have a pen that funds 'Cancer' research I'll buy it. Still waiting.
I'll revisit this blog as and when I can or need to, I still of course have a way to go before I'm given that all clear signal. There will be scans and so on which I'll update here on the blog. Other than that I have nothing else to add for now and will focus on the F word as the C word is just far too offensive for me right now.