My History

I've been wanting to write a blog about my experiences for a while, but never did get around to it.
I've finally decided to sit down and sort it all out, so i'll start at the beginning, and add some blog entries from my diary.
Apologies if some entries are long, and also written in different tenses - it depends when I actually wrote them!

Wednesday, 24 February 2010

Bupa Great Manchester Run 2010

Unfortunately I cannot do the race, although I would love to.
My sister and brother in law are both taking part - I'm really proud of them, they have started to train - and both aren't very fit, so finding it a challenge.
If you wouldn't mind sponsoring them, it's for a very good cause (Lymphoma Association)

Wednesday, 17 February 2010

The Waiting Game cont.....

Well, today it's a month since I went down to the Royal Free for my initial consultation.
For those who don't know me, from my previous entry you know I'm getting worse, and for those who do know me, you'll know I'm getting worse because I think I'm moaning about the pain more.

Anyway - back to the month today......and I've still not received a letter either from Lancashire PCT or from the Royal Free or The Christie[Manchester].
I'd said I'd phone the Lymphoma nurse at the Royal Free if I hadn't heard anything by today - which I hadn't, so I did phone.
I had to leave a message on Frans [Lymphoma Nurse Specialist] answephone. She did phone me back this evening, and asked how I was. Told her I wasn't good (Nurses and Doctors have this effect on me that when they ask how I am I nearly burst out into tears! Had to hold them back!), and that the pain has increased.
She sympathised, but said unfortunately they haven't heard anything from my local PCT.
Fran has already passed the message on to chase it up if possible (she passed the message on to someone on Monday), so keep those fingers crossed that I hear something soon.

Monday, 8 February 2010

The Waiting Game....

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.....