Well i'm still waiting for new from the PCT and the Royal Free. It's going to be 3 weeks on Wednesday.....
I'm getting good at this waiting thing.....waiting in the hospital for an appointment, waiting for chemo to arrive, waiting for results etc etc.
This waiting game is particularly hard because I know the tumours are growing, and causing me more and more discomfort.
It's now been 6 months since I had any chemo, and to me it's getting worrying, it's getting harder to stay positive and keep focused on the good things that i've got.
I've not got marks on my chest in the area of the tumours, a rash (not visible)on my arms, my collar bone has a swelling over it again. The tumour under my arm seems to have grown rapidly, and quite large, as I have a visible lump, and i'm still in pain.
The past week has been a bad week for pain.
Since the pain started at the end of October 2009 it got very bad, then subsided, and I even got a few days earlier this year with no pain, but at the moment it's getting to 'very bad' again.
Im reluctant to take co-codamol because of the way it knocks me out, and takes away my 'normal' quality of life - I sleep a lot, don't wake up even if the phone rings next to me, can't drive, slur my words.......
I received a reply from St Marys in Manchester with regards to my complain. Needless to say the letter is full of crap, saying things I was supposedly told....which if I was, I wouldn't have needed to put a complaint in.
So this weeks task is to write a reply and get it sent off - whilst still checking my postbox every day for a letter from Lancashire PCT.
Fingers crossed that the letter comes soon, and their decision is that I can have the treatment down at the Royal Free.....