The great escape

Ah yes, home sweet home :- a sanctuary from the world; a haven of peace from the hustle and bustle of everyday life; a retreat in times of stress and pressure; somewhere you can relax and be yourself. Or, more realistically, a place where the dog is ready to pounce at any time, lick your face and proudly show you the latest fox poo she's collected on her walk; a place where the kids bounce on you regardless of the huge line hanging out of your chest; and you tiptoe around afraid to touch anything in case it's got bacteria on it. I wouldn't swap it for the world!
After a lot of faffing around yesterday (I can go, I can't go, etc), I managed to get home from the hospital by late afternoon and it was great to see everyone again. I went in for more chemo this morning and was again allowed home afterwards. I'm feeling surprisingly well and, after initial misgivings about my energy levels, I think getting home when I can is a great way to distract me from the transplant itself.
So, here I am, in the middle of a bone marrow transplant, sitting at home worrying about how I can get out of doing the washing up and hoovering the house - what a lovely distraction!
It won't be long before I won't have the energy to get out of bed, but I'll deal with that in due course. As it currently stands, at this moment in time, I feel great and am spending time with my beautiful family - nothing else matters.

No sleep til Brooklyn

When I'm not jogging, volunteering, playing guitar, eating and drinking, I can occasionally be found playing guitar hero with the kids on their Wii. One of the songs we like to play is No Sleep Til Brooklyn by the Beastie Boys. It's fun watching a 5 and 10 year old hopping around to the tune.
I was thinking about this at 2.30 am this morning when I was finally unplugged from the drip after another full day of Campath- the itchy chemo. As I type, I'm having another attack of hives - particularly on the soles of my feet and between my toes (trying really hard not to scratch).
Anyway, back to last night. The joys of sharing a hospital room meant that just as I was drifting off to sleep around 3am, the guy in the next bed let off a ripper of a fart and a snort. That woke me up again I can tell you. I guess I now know how Sue feels after I've had a couple of pints 😄)
So, feeling tired now, but very comfortable. We've had breakfast and I'm enjoying a peaceful moment before the docs come around. I hope to have a better night's sleep tonight as it may be in my own bed. The lengthy chemo that takes 16 hours per day has finished, and the next 4 days will be just a quick hour-long infusion that is well tolerated by people, so if I'm not reacting to anything, I should be able to go home and come in every day until Tuesday. After that I will be back in for the duration - in my own room I'm happy to say, so I won't be troubled by smelly thunder in the night anymore (well, at least until I get home.....)

Long Day, late night

I sneaked out of the hospital to the nearest pub and went drinking until 4am. Ok, I didn't! It took until 4.30am to finish yesterday's treatment. It was scheduled to be delivered over 12 hours anyway, but I had a reaction which meant they needed to slow the rate of the drip. Fever and shivers and I've never see so many hives in my life- everywhere, even in my mouth and ears! The nurses here are great and took care of each reaction as it happened.
I'm feeling fine again now. Just sitting here waiting for breakfast. I'll enjoy a couple more hours off the drip before I go back on for the same again today (if I don't go to the pub instead ☺  )

Here we go

I'm on my second day in hospital already. Yesterday was a mixture of a lot of hanging around for them to put in the central line and then waiting for a bed on the ward. The central line insertion was fine and it's being used as I type for today's chemo. I was nervous before the procedure, but then they gave me a sedative and suddenly all my problems were over! I floated around for a while before it wore off, and the procedure went smoothly.
Today's drug is called Campath. For the medically-inclined among you, it's a monoclonal antibody whose purpose here is to reduce/remove my T-cells (a certain type of white blood cell). This is effectively starting to dampen-down my immune system and make it more receptive to the stem cells when they arrive. I will have the Campath today and tomorrow- 12 hours each day hooked up to the drip.
Sue's here with me at the moment. Once she's gone I think I'll get very bored as I can't get my tablet to connect to the WiFi network- I was relying on that to watch tv/films. Luckily my phone connects, so I'll watch stuff on that.

Hair fun

I've been going through the hairstyles a little these past few months. Back in September, I decided I wouldn't get it cut again until after Christmas - just to see what I looked like as a mophead (I used to be a mophead when I was a kid - a real beatles-type cut).
So I got a bit raggedy up until Christmas - I even had some small curls (sorry, no pics). Then after Christmas I had it cut - the intent being that I wanted people (especially the kids) to get used to seeing me with shorter and shorter hair. The next step on that process was this morning when I had the kids give me a #1 crew cut. They had a lot of fun doing it too (see below). The next hairstyle will be in about 3 week's time when I go bald. Then 6 weeks or so after that, it will start to grow back. Last time it grew back after chemo it came back thicker and darker - that's one of the good things about chemo. Weight loss is another good thing, as is increased private parts size (but that's another blog for another day!)

Why am I not more nervous?

With one week to go before I start my Allograft (that's short for Allogeneic Stem Cell Transplant - a transplant of stem cells from a donor), I'm feeling surprisingly relaxed about the whole thing. I thought by now I would be getting very nervous, but maybe I'm just getting better at blocking out the worry of upcoming treatment as I've had a lot of practice over the past four years.

Maybe it's because I've already been through a transplant and know (kind of) what to expect. The big difference with this transplant is that I am using donor stem cells to rebuild my bone marrow, rather than my own. This introduces the risk of Graft Vs Host Disease where my new immune system will attack my body. We want this to happen to a small degree because it means the new immune system is also attacking the Lymphoma, but don't want it to severely attack my organs - this is the balancing act the docs will be performing in the upcoming months until my new immune system beds-in and recognises my (Adonis-like ;-p ) body as friendly.

My donor is a young German male - 27 years old and is fit and healthy. That's all I know about him for now - and that's all I need to know. Once I'm through this and out the other side, in 5 years time, I can meet him - all in good time. Out of 25 million people worldwide that are registered as bone marrow donors, they found 2 perfect matches. Interestingly, both are in Germany - maybe that says a lot about my ancestry and where my forefathers came from. Unfortunately, none of my three siblings were matches - but I'll let my mother explain why that might be :-)

I'm in good shape at the moment. I wasn't too good seven months ago when I relapsed - my spleen was huge, I was anemic and had no energy. But six months of chemo got me back into remission and I'm feeling really well at the moment. I'm back running, eating like a horse and trying to put weight on before I go into hospital. I have passed all my pre-transplant health checks and have reached the point where I am ready to just get on with it now.

Having been through a transplant already, I'd like to think I know how the transplant is going to go, but nobody can predict how I will react. It starts with seven days of chemo to get rid of my bone marrow. Then on Feb 4th I get the stem cells and, after that, it's a waiting game - waiting for the stem cells to build new bone marrow and for the marrow to produce new white and red blood cells. The waiting can be anything from fourteen days to a month. In the meantime, I may suffer from infections, sore mouth, diarrhea, vomiting, no energy, no appetite and so on. Sue doesn't want me to talk about what might happen in case it's a self-fulfilling prophesy. With that in mind, I think what will happen is every night, nurses in short skirts, black stockings and suspenders will sit on my knee, give me a massage and feed me chocolate with the occasional cigar and glass of brandy. This will go on for two weeks after which I can go home as the transplant was a resounding success (and I didn't even notice it as I was, er, otherwise occupied).

Let's see what happens.....

Jan 19th - one week to go

One week to go. Testing, testing, 1, 2, 3.....