I am so behind with info that I have received from friends abroad and home for trials and things, plus a lady who wishes anyone with meso to visit their centre of well being, I am sorry for not getting these posted yet but I am so absorbed in my pains at the moment.
The last month has been the worst I have had since surgery with morning pains, my mind is still trying to put them in boxes inside a dream or trying to create a survey where I tick them. Strange how the mind works trying to get your body out of a situation. I am now seriously worried that this is the start of the end and there is nothing I can do. If I could go to Dr Abtin then the nodules that are touching these nerves could be blasted and then I wouldn't have this morning pain. Why is everything so hard for us to have. Does every other group of cancer sufferers have the same problems as those of us with meso? No cure - no procedure!
I know that a few others are having a tough time too, Mave has been told to enjoy quality of life, but if she has pain how does she enjoy it? I have been told a couple of times that there was nothing left but have pulled through now I feel there is nothing left yet every nerve in my body is trying to tell me something and I just don't know what. The only thing I do know is that I do not want to die, and I certainly don't want to have a long drawn out painful death either.
Please find us a Knight in Shining Armour that comes in a pill to save us all
2 comments:
Keeping a look out with you for a knight in shining armour. So sorry about the pain, I know Ray is also bad in the morning but he tries to keep it to himself so as not to worry me. It seems to get easier as he moves around.
I do think meso has its sown issues with doctors because it is so easy to write you off. It's up to us to keep fighting for support and research.
wishing you both a good weekend
Amanda
Thanks Amanda, I am confident that Ray's pain will ease, the operation damages so much and it all takes time to heal.
Its good that we all support each other and share, otherwise we would be written off or swept under the carpet.
Take care Jan
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