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!

Thursday, 30 September 2010

Chemo, Transplants and TMI

Today was my appointment with 'The Transplant Doctor' (as I like to call him).
I saw him last year when I was supposed to have my transplant, but obviously that all went tits up, so I was there again today.

He just went through everything again - but obviously this time it was geared around an Allogenic SCT, rather than an Autologous transplant.
He told me the risks, the hospital stay, the chemo, the blood tests, the recovery times, and he also explained in more simple terms how the transplant works.

IF (thats a big if) the chemotherapy works enough for me to have the transplant (tumours need at least a 50% response), then I will have the transplant quite soon after - so if things go smoothly (do they ever for me?), we are probably looking around x-mas time.

Recovery time for an Allogenic SCT is about 12 that plus Chemo time in a few weeks we are talking minimum of 15 months.

There isn't even a big chance of it all working......but it's this route or nothing.


Monday, 27 September 2010


Everything is a fucking failure.
The treatment didn't work.
Cancer is more active than it was before I had the treatment, and also growing again.

ESHAP chemo starts in 2 weeks.

8 years fighting is taking it's toll on me.

Tuesday, 21 September 2010

The past 3 months....

I last posted after I'd been at home for 1 week when I'd received the CHT-25 treatment.
Now it's about 14 weeks post treatment. So much time has passed, and all I've wanted is my life to be as normal as possible - which meant not writing here.

I had a scan at 4 weeks which was very positive - nodes in my neck were no longer active. Chest tumours had shrunk by half, and under arm by 2cm. All fluid in my lungs had also cleared, as had the rash on my chest. I had energy, and could actually breathe.

Since then I seem to have been on the up - doctors have been pleased with my progress. Doing their usual prodding and poking they continued to think the tumours were shrinking.
My bloods continued to drop, but the lowest they got was my neutrophils at about 1.2.
After 10 weeks of continuous weekly hospital visits they said I didn't have to go back for my last few appointments as I'd had no problems, and my bloods were on the up. They booked me in for a PET scan, and to get the results a week later.

The LEP and both Granada and BBC have all done a few more pieces, so I was famous for a short while again.

Hearing I didn't need to go back for a few weeks, and also starting to fall back into depression - like a big chasm below me - only holding onto sanity with my fingertips, I requested my PICC line to be taken out, and I booked a holiday with Mum.

Now I'm back home, and my PET scan was today. I hate those things. hate.
The bed you lie on is metal and cold. The room is freezing. The arm rest thing is metal and cold, and a conbination of havig your arms above your head, and your whole body freezing makes your shoulders feel like they are being ripped out of their sockets. The nurse counted, and in the past 18 months I've had 5 PET scans.
I'm sure I'm always going to be slightly radioactive. Just look for the 'glowing' house on google maps.

Results day is 27th September.
In 8 years I've never been nervous about scan results. This time I am.
All I want is for the treatment to have been a massive success, then I can get on with chemo and a transplant, and get my life back on track.

I want to enjoy myself. I want to travel. I want to work. I want to feel 'normal' again.