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!

Tuesday, 31 May 2011

Up to Day +125

A lot has happened since I last wrote, and I know I should have recorded things sooner, but these days I find it hard being in the right frame of mind to sort out my thoughts/feelings, never mind writing them down for people to read.

After the 'good' news with regards to my scan a few weeks ago, I saw the 'main' doctor for transplants, who told me he's not as pleased as the other doctors with the results, and that we 'still have work to do'.

I did have my bone marrow biopsy, and also my central line taken out, which is nice to be 'free' from having something dangling out of your chest all the time!

I was taken off all ciclosporin, and my skin GVHD continued to spread (face/head/hands/arms/trunk/legs), and I also developed GVHD in my gastrointestinal tract - not so nice, but I am coping with both types that I have.

Then just over a week ago I started to get out of breath doing simple things (getting out of bed/walking around the house). I waited until I went to my regular 'Tuesday' clinic - where I had my o2 tested, and I was found to only have about 82% oxygen in my blood.
The doctor decided to admit me there and then - I persuaded them to let me go home and get my clothes etc, and I was put in a side room, on Ward 11 later that evening.

My breathing was very bead for the first 2 or 3 days - I was using oxygen after walking jusr a few steps to the bathroom. I had multiple tests - X-ray, CT Scan, Broncoscopy (which I DO NOT recommend), lung function test, blood tests, nasal swabs......
The results came back with a type of PCP. I was put on steroids, and lots of antibiotics - both oral and IV.
Luckily I did improve quickly, and was off the oxygen by Thursday, and off the IV antibiotics by Saturday.
Unfortunatly the doctor thinks I should stay in for a while, which is what i'm finding hard to cope with. I've been here for a week today, and they want me here till about Friday - as long as a scan/x-ray comes back clear, and I will still continue on antibiotics for 2 or 3 weeks when I get home.

'Health' wise I actually feel fine, which I think is quite frustrating as I want to be doing things, not stuck in a hospital room! Luckily my doctor has said I can leave my room, so I've had a few walks around the hospital, and last night he said it's fine for me to go for a drive, and go out to eat somewhere.

'Mood' wise is what I'm finding increasingly hard, and it seems to get harder every time I have to stay in here.
October, November, December I spent a week in each month.
January/February I spent a month in.
May - so far it's been a week........I know there has been a gap, but you get used to being at home, and in your daily routine, happy and safe!
Right now I'm just counting hours until I can get home to my family....thats what I miss the most.

Wednesday, 4 May 2011

Up to Today - Day 98

I am now on Day 98 since the transplant, and everything is going well!
Still....more weekly visits, but the doctors being very pleased with my progress.
Dr Bloor said I was an example of how a transplant should go, and how recovery should be - thats a positive thing to hear from a Doctor, and he is always so straight! I like his attitude, he tells it like it is!

My Ciclosporine levels (anti-rejection drug) have been up and down, rather than stable (should be 150, but mine have been as low as 34, and as high as 260!) but luckily doctors didn't seem too bothered, as I wasn't having any unwanted symptoms/side effects.

Last week, on day 89 I had a PET scan, and I got the results yesterday...........lets say they are good
No signs of the cancer that was there before my chemo at the end of last year!
My lungs are very scarred, and the is a lymph node under my right arm that is 'active', but it's not grown since my scan in December, so they aren't thinking it's cancer, just scarring really (as if it was cancer, it would grow). They also tested the 'donor cells' in my body, and these are at 100% - which is apparently great
I have another Bone Marrow Biopsy next Tuesday, and they are also going to take my Central Line out of my chest
I feel i'm on the road to being 'normal' again!

I'm still on weekly visits, until I am off my anti-rejection drugs, then I'll move to fortnightly, then monthly!
They will still keep a close eye on me, so lets hope my body has learned to fight cancer now, instead of accepting it's a 'normal' part of me!

I've developed GVHD (Graft versus Host Disease) - my skin is very flakey on my face and hands, and itches a bit, but they've given me steroid cream for that.....but developing GVHD isn't a bad thing, especially before day 100 - and i've only just developed it!
I can deal with dry skin (much like psoriosis (sp)).