Wednesday, 24 September 2014

Collecting Invisible Illnesses

I have made references in some of my WoW posts recently to having more health complications than usual, but I haven't really gone into it in any detail. This is more from a wish to pretend it isn't really any worse than from a desire to keep things hidden.

This month, on top of the ME/CFS and irritable bowel syndrome, I was diagnosed with cancer. As cancers go, this isn't a heavily aggressive type that will invade my whole body. Its a soft-tissue sarcoma located on my left leg a little below the knee. Since the beginning of June, this tumour has grown from a barely discernable pea-sized lump, to its current size a little larger than a golf ball.

I have been going back and forth to a hospital in London that specialises in cancers for seemingly endless tests and scans and on 30th September I will be admitted for surgery in the hopes that the tumour can be removed entirely.

I am actually a lot more worried about what surgery will do to my current level of ME/CFS symptoms than the cancer surgery itself. I've had to consider many things that probably don't become an issue for people being admitted to hospital. As my condition is made much worse by an increase in sensory input, even a short stay on a hospital ward is a problem. Bright lights, other patients with visitors or medical practitioners talking to them, regular nurse observations...the list is almost endless. Each of these things take a little bit more of my very short supply of energy. My energy levels will be low already with the travel to central London, as well as from the surgery itself. Even with dark glasses, ear plugs and eye masks I am likely to deplete my energy stores incredibly quickly.

Then there is the general anaesthetic itself. Patients with ME/CFS often react badly to anaesthetic and I've had to supply pages of information about types of anaesthetic that cause frequent problems with ME/CFS, as well as things that need to be checked before surgery to prevent chances of heart failure or breathing difficulties. Its been rather overwhelming and Mr Wench has been incredibly stressed and worried as well as myself.

I worry that the short stay in hospital and the surgery I will receive will cause my body to relapse and drop to a more severe level of ME/CFS. It happens often to people in my situation and can last for years or even be permanent. Its all out of my control and as the days tick past towards the surgery I find myself wondering just what quality of life I will end up with once I return home.

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