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 December 2010

Low bloods and waiting..

Ok, so Christmas is officially over.
I got home about 6:30 on Christmas eve. We managed Christmas Dinner at Mums house (with a nap on the sofa), and have muddled through the last few days as always (eating loads, but getting quite dehydrated as I can't drink after chemo for some reason).

29th December were Lung Function Test and ECG at Wythenshawe Hospital in preparation for the transplant.
Today I had to go back to Christies for a blood test, as last week my HB was low.
My blood results today were as follows;
HB - 8.6
Whites - 1.8
Platelets - 57

All still rather low, but luckily no transfusion needed (just).

Wednesday, 22 December 2010


Am now bald (ok, I have fuzz), and half-way through my hospital stay for this last chemo.
Should be out sometimes x-mas eve late afternoon/early evening!

Very bloated as i'm on massive bags of sodium chloride and potassium 24/7, aswell as the bags of chemo- very uncomfortable!

I've been rather depressed this week, as not only is it mine and OHs first christmas together, and we're apart this is 15 years since my Dad died of cancer. He was also a patient at this hospital (didn't die here though) - but doesn't help the depression!

Saturday, 18 December 2010

Getting hard to remember....

It's getting hard to remember to update anything, my mind is so mashed with the chemo!
This will probably repeat a lot of the last entry, but here goes anyway.....

Had 2 scans after 2nd chemo, and got the results a fortnight ago.
It's worked really well, so doctors are pleased.
We got to see the PET scans, which was amazing to see how much the cancer had shrank, and also how less active it is.
Don't get me wrong, i'm not cured, and it hasn't gone, there is a LOT of cancerous lymph nodes in my chest. The ones under my arm are a lot smaller and less active.
A lot of the ones in my neck have gone, and the ones that remain are not very active at all.

Last Tuesday Shelley came with me to the hospital as I had an appointment with the doctor who deals with the transplants.
I should be having my transplant in about 4 weeks, but before I have it, I've got to have some organ functions tests, and Shelley (my donor) also has to have some tests, and have some medication just before she donates - to stimulate the growth of more stem cells.

Because i've got to have these tests, the doctor wants me to have another dose of chemo - not because I 'need' it, but more because he doesn't want me to go 8 weeks with no chemo, as my cancer is very agressive, and will start to grow in that time (it's 4 weeks since I finished 2nd chemo, and 4 weeks till transplant).

They tried to get me a bed late last week, so I could be out by the start/middle of next week, but unfortunately there were no beds until Monday.
So I go in on Monday morning, and they will try to rush the chemo & fluids as much as they can to get me out on Christmas Eve. If not, it will be Christmas Day that I get out on!

I have to go back on 4th January to see the transplant doctor again (I will have had organ function tests by then), and hopefully should have the transplant a week or 2 after that.

Friday, 10 December 2010

Where does time go?

Well, it's nearly 'that' time of year again - already.
The past 12 months have been bloody hard, harder than I thought anything I go through ever would be.
But do you know what......I've made it this far with the help of friends and family, and I know I can make it further.

I got out of hospital on 13th November, and went for a CT scan on 17th November. Earlier than they wanted me to have a scan, but the next available appointment would be too long to wait, so this one had to do.
It wasn't fun - as usual it didn't run smoothly (come on, face it, what runs smoothly for me!)
I was taken through to the back, told to put my gown on, and then proceeded to sit there for over an hour as they forgot about me. The actual scan went ok, which was good.

Next was waiting a few feeks for my PET scan. Hard doesn't describe it.
Pain in my chest started to come back, and the uncomfortable feeling under my arm returned. Of course, me being me, I was fearing the worst. I've had to put myself back on Tramadol periodically for the pain.
Luckily I haven't had any problems with my central line, which is a bonus.

Tiredness and depression have been my other enemies since I came out of hospital. I've had no drive to get up and do anything, and have slept a lot during the day

The day came for my PET scan (Friday 3rd December), and when I got there the nurse recognised me - i'm not sure thats a good or a bad thing!
The scan went fine as usual - just freezing when you are laying on that cold metal table with freezing air conditioning blowing onto you!!
Now to pass the weekend until Monday - results day.

Monday came after a sleepless Sunday night.
Mum and Mike came with me - both for moral support, and as I wanted them both to be there for my results because I felt that day would be an important day and I needed the people I love around me.
All Sunday night I had been planning my 'speach' to the family for when the doctor told me the chemo hadn't worked as planned. How sorry I was for letting them down, and how worried I am for what comes next as I wasn't sure what kind of chemo I would be able to have next, as I've had most of the drugs they use for Lynphoma (and for relapse patients).

Of course the doctors were running behind....don't they always when you are anxious.
Over 2 hours after my appointment time, the doctor (Adam) finally came into the room.

He said hello, shook our hands, stood there and said something along the lines of "You had your scan on Friday and everything is looking good."
Thats when I went into shock, and I think I had to ask him to repeat what he had just said! I really had set myself up for more bad news, as all i've had for the past 20 months is bad news.
He told us that the tumours are less active and smaller. I asked if we could see the scan, as i've never had the oppertunity to see one.

We trooped into the doctors office, where my scan from Friday took up half the screen and the other half of the screen was taken up by Septembers scan.
I think my words were "wow".
It's always hard to remember what was said (by others and yourself) when you are in shock!
It really put things into perspective, as it's one thing for someone to say "the chemo has worked and the cancer is shrinking and less active". It's another thing to SEE that the cancer is less active, and there are less tumours, and the ones that are there are smaller.
The big one under my arm was showing up black on Septembers scan (black is very active), and on Fridays scan it was gray! I didn't realise how many lymph nodes in my chest were cancerous before seeing the scan, but comparing September to Fridays scan was great, as even though there is still a lot of cancer, the nodes are smaller, and less active.
Seeing my neck was great, as there were only a few very light gray nodes - which I was hopeful about anyway as both myself and Kim [the doctor] haven't been able to feel any lumps for a while.

Now to wait until Tuesday when I see Dr Bloor again. He might decide I need another dose of chemo, but hopefully with how well the chemo has worked I should be able to start planning to have my transplant. On Monday the doctor (Adam) said we are probably looking at January.

Well done if you've got this far - this has been a long entry, but now you know my good news :)