As with many people I had a chest X-ray for something else and kaboom - here I am! It's very early days. My GP refferred me on 18th July. I've had a CT scan, seen a consultant oncologist, got myself a lung cancer specialist nurse I can call and had a PET scan. But there's a big delay with PET scan reports coming back and until that happens nobody knows my full diagnosis and I have no idea what's going to happen.
I'm 72 and until 4 years ago had never had anything important wrong with me. Then ME/CFS/Fibromyalgia. I think the prrocess of coming to terms with that is probably very similar to the process of acceptance around having cancer. It took me a long time but I got to a "it just is" place. It's still very painful and exhausting and I'm pretty much housebound. In fact I've just bought my first powered wheelchair but I'm a bit too stressed to go road testing it. One of my major worries is that throughout any treatment for cancer I'll be treated by a lot of people, the majority of whom will have no understanding of ME or Fibromyalgia. Nobody understands ME, believe me. It's not a psychological condition. The World Health Organisation says it's neurological. Someone should tell the NHS! For example as part of my "full hand" of symptoms I have peripheral neuralgia and allodynia. This means my clothes hurt. I have then all altered to put the seams on the outside! And this will have implications for any stays in hospital. I want to wear my nightie inside out. I have an oversize sweatshirt, inside out, with the arms and hems cut off, as my dressing gown - see what I mean? They'll think I'm nuts.
And added to that I am nuts. I have a mental health condition. I have a psychiatrist.
But all this sounds too negative. Part of me is quite calm and will just get on with it (mostly, hopefully). I know I'll have a whole range of emotions and that they're understandable.And I know they'll overwhelm me from time to time. They did on Thursday. My family have a thread on Fbook Messenger and I ranted and raved. And they were kind and supportive. Then was exhausted yesterday. But I'm OK today. I did a Mindfullness for Pain course a couple of years ago and it was soooo helpful. Not medidtating - not my thing at all. But understanding the role emotions play in how ill you feel or how much pain you're in. That understanding was the key to living with a chronic illness. And I can use it for lung cancer too. Once I've got my head round the idea that I really do have cancer.
Enough now.
gail
