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, 6 January 2010

December - The end of the year. Can it bring good news?

6th December
Well, it's results day tomorrow. I finished chemo in about August. I had a CT and a PET scan in September, and got the results, which werent great.

Even though I was PET positive, and one tumour had grown, they decided to leave me till the end of November, when I would have another scan. (30th November).

Now to me...when the cancer has grown whilst i've been on's most likely going to grow in the time i've NOT had any treatment - which is nearly 3 months! (I know that isn't always the case, but thats how I see it)

I've been having lots of pain, and the Dr at the hospice I go to tried to get my scan brought forwards, but my consultant & secretary ignored my request, and ignored the Hospice Dr's calls and faxs - I'm really miffed at this, as my consultants are always telling me if you have a problem, ring us, and we'll bring your appointment forward etc.

Well, I had my CT scan on 30th November, and the results are tomorrow. We've had one good piece of news, which is that my sister is a good match for my Stem Cells, so when I'm eventually well enough to have my transplant, she will be the donor.

The dr's have said I need to be in remission before I have the SCT, but they just don't know how to get me there :(

Lets hope tomorrow brings some good news.....

7th December - Results Day

The tumours in my chest and neck have 'only' grown slightly.
The one under my arm has grown a little more, and it now 2.5cm.

I've been waiting for test results to check for a 'cell marker' called CD25. I've found out today that I have this cell, which means I have been accepted onto a trial at The Royal Free Hospital in Hampstead - which is along way from us!
I will be having a treatment called Basiliximab - which is like radiotherapy, but administered through a drip, and only attacks the 'CD25' cell marker, so won't damage other cells (Hope this makes sense!).
I will be in hospital for about a week, and stuck in a room as I will be radioactive!
In the mean time my fertility results are next Monday.

Also, today they have taken my Hickman line out.
It's not been used since August, and is just an infection risk!
They have to cut part of it out, so i've come home nursing 2 stitches, and the local anasthetic is wearing off, and it's rather tender!!!

9th December

I had to go back to Christies today for another CT scan, on my lungs/chest because of the pain i've been in.

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