Someone tell my muscles!

Can someone please have a chat with my muscles?? Tell them that my scan results are really good. So good in fact that the charity that provides me with palliative care support on behalf of the Belfast Trust have signed me off! Unfortunately I still have an incurable brain tumour, but it’s behaving itself and I’m no longer deemed to be at immediate risk. I didn’t even know this was a possibility. I thought I was on one path and it was only the time frame that could vary. That’s probably still true, but it looks like that time frame is potentially going to be a lot longer than was thought. 

Fantastic news! The best we could ever have hoped for. Now, in order to enjoy it fully, I just need to find a way of getting the message to my poor joints..... I remain in agony! Across my neck, my shoulders, my arms, my back, my legs and even my hands and feet. The pains move around but overall it’s just constantly uncomfortable. Not only am I plodding about like the Tinman, I also get shooting electric shock type pains. Night time is the worst. 

I refuse to let it stop me. I may have to learn to live with pains like this for a while at least. As ever I have two choices; lie down to it or stand up and fight. I don’t generally do the former.... 

Hopefully we’ll get some answers soon but in the meantime I’m gently working through. Nothing has stayed the same on this journey. This won’t last either. 

So I tentatively celebrate the fact that my brain tumour is happier with me and no longer trying to assert its authority. I’m getting on with life as I have done from the start. I am more grateful than ever for the amazing family and friends I have around me. Those that have stuck with me and shown me unwavering support and love. You’re the best! Xxx