It's been a whole month since I last blogged - very remiss. But to be fair, there has been so much going on, some things that I just can't blog about, one of those times when life just takes over.....
Many of you will know that after 11 years on the drug trial it has come to a close and I am now having to secure the funding to get Glivec on an ongoing basis. The news was a bit of a shock, I knew the trial would end at some time, I just hoped the transition would be gentler. I was beginning to regret the title of this blog I can tell you...........
I am sure that it will get sorted and all will be well, but having my consultant only give me a months worth of the drug that is keeping me alive and a fully functioning member of society and the news that I would have to go through the system to get more was, to say the least, disconcerting.
I'm a fairly hardy CMLer - used to the rollercoaster life it has brought me, but I still wish that sometimes, just sometimes, people were a little bit gentler in the way that they handle things. After 11 years you crave normal - you want to avoid the reminders that there's this thing inside you that can come back and cut short your time on this planet.
The funding news brought my own mortality starkly, harshly, far too bluntly, back to the fore.
I didn't really need to be reminded that my life hangs on the next blood test, the four pills I take every night, the fingers that are crossed.
I complain about very little in my treatment - I think my care has been exemplary over the years but I think it's time that the world took another look at those of us living with cancer and other long-term conditions, it's no longer necessarily an immediate death sentence.
With fantastic improvements in treatments that is exactly what we are now, living with long-term conditions. This is a good thing, but we need to find ways to live with this, and we need those dealing with us to change their mindset too, I may be slowly dying, but in the meantime I am living in exactly the same way as every one of you.
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