It's Great to be Home!

It's absolutely fantastic to be back here after all this time. I spoke to Happy Matt before I left and it turns out that although medically I wasn't quite ready to leave some other poor soul needed the bed and I was close enough for them to allow me to go home. My neutraphil count was 1.97, just a whisker away from the 2 they like it to be before you leave. Now it's just a question of trying to get my strength and energy back and something resembling an appetite.

So what's the experience been like? Well long to start with. It does help that they give you a rough time scale when you're starting out and I've followed that almost to the letter. They said three to four weeks, and it was three weeks and one day. For long periods I was too unwell to really care about or be aware of the passing of time, but as I've got better these last few days have started to drag. The hotel is a great idea as it softens the hospital element to a degree, although as I felt pretty unwell for periods I doubt I would choose to stay there ever again. I'd read blogs by people who had been through this and was amazed to read they'd been out for dinner whilst on chemotherapy. I didn't think this credible. But on the last day of my chemo I did indeed feel well enough to go out for a Thai meal, and on another night the cinema. So it can be done.

My overwhelming memory though is of sickness, either feeling nauseous (which is wretched) or actually throwing up. I think it's just the way my body reacts to all that poison being tipped into it. The medics did their best and I don't suppose it ever got out of control, but it did go on for a long time and was pretty debilitating. It affects your appetite, your mood and your energy levels as constantly being sick is pretty exhausting. It's the one big negative of the whole thing. On the other hand having been warned how nasty mucositis can be I think I escaped pretty much unscathed particularly in my mouth and throat thanks to the copious amounts of ice I ate at the time of the infusion. It's well worth the pain. I did suffer some nasty heartburn and disturbances to the lower bowel but I think I would have been very unusual indeed not to have had these side effects. That coupled with the nausea and vomiting made for an uncomfortable few days. It makes you realise just how toxic the chemotherapy they give you is.....I can't believe any cancer cells can have survived the onslaught.

The staff here are fantastic. I have been really well looked after and never once thought they had taken their eye off the ball. I've see the transplant registrar (Happy Matt) every day and the consultant (Kirsty Thompson) twice a week. As well as this the nurses are all absolutely at the top of their game and you know nothing is likely to be overlooked. The room has been cleaned thoroughly on a daily basis and bed changed as often.

So overall I think it's gone as well as it could really. Although I've had smouldering temperatures there's been nothing to make me feel unwell in that regard, so on the infection front I've been very lucky so far. I'm still at risk (and will be for some time) but that diminishes with every day that passes.

Day +13: SPRUNG

Just been told by the doctors that I CAN GO HOME.

Forgive me for not writing more....but I have to pack.

Day +12: So nearly there.

Here's proof (were it needed) of my new mobility and freedom as I sip a latte in the UCLH cafe opposite Warren St tube station. You'll notice I'm a little thin. I'm down around 6kgs and am starting to look a little pinched in the face. Don't worry...when I get home I'll get the weight back on I'm sure. And speaking of home....

Well my latest neutrophil count has come in better than expected at 1.7 - well above target, and so I've had the last of the growth factor injections this evening. I expect another good increase tomorrow, then provided I don't have a dramatic crash or get a fever I could possibly go home on Wednesday! They stopped giving me i/v antibiotics today, so I won't have to be woken up at 0100 for them to be administered, which will make a nice change. It has become a bit of a question of marking time now.

Dave J popped in to help me pass some of it today. He was at a climate change event at UCL and dropped in on his way back to Paddington. It was great to see him and get some news of the outside world. It turns out I was mistaken in my belief as to the identity of Kitten Kong, although Alasdair may have given it away by mentioning there was no sign of him at Sixways on Saturday. Or maybe I'm just plain wrong again? Cheese anyone?

Day +11: Open for Visitors

A quick post tonight as I'm having connectivity problems up here in top of the tower land. Just to say then that with a healthy total WBC and neutrophils at 0.72 (sure to be over 1 by tomorrow) I am no longer in splendid isolation and indeed can actually leave the room. This I duly did this afternoon as Nik and I went down to the canteen for a coffee. I have to confess to feeling really weird being in clothes again, really restricted and uncomfortable. Maybe I've discovered my closet naturist? Anyway have no fear, modesty has prevailed and will do should you decide to come and visit. I'll be here certainly until Wednesday and would love some company. Here's my address; bed 27, ward T16, main building UCH, Euston Rd. Don't forget the alcohol gel on the way in (for your hands PD!) and please don't come if you feel even slightly unwell. It would be lovely to see you. Medically I continue to improve; daily GCSF injections continue + i/v antibiotics although my guess is they'll stop the latter tomorrow. No nausea and no stomach cramps.

I met a chap who underwent his stem cell harvest at the same time of my (unsuccessful) first attempt whilst in the canteen. He's just starting his transplant. I was mightily relieved to be sitting on this side of the procedure as we chatted. I'm being to feel a great sense of relief now; that I appear to have come through this reasonably unscathed (so far) and that it should, with any luck, be a long time before I have to contemplate chemotherapy again. A massive weight is being lifted from my shoulders.

Day +10: Neutrophils!!

The cavalry are definitely on the way. From being completely undetectable there are now neutrophils present in my blood again. The current figure is 0.09. To put this in context it needs to be above 1 for me to be allowed home as this is deemed a safe amount. So what happens is we wait for that to happen and then withdraw the growth factor I've been getting to stimulate them just to check I can keep up production without any extra help. Once that is confirmed I can go home! What's encouraging is that even though my haemoglobin has dropped under 10 it hasn't crashed completely which suggests that my bone marrow has definitely started to work again.

I'm generally feeling a lot better today and have asked them to remove the pump that's feeding me constant anti-sickness meds. I'm also aiming to drink enough today to remove the need for i/v fluids. I don't want there to be any reason for them to delay my departure.

On reading my comments it became clear that kitten kong had taken a few drams too many and that Lynn and Dave may have joined him. AMIL and AFIL provided an answer as to what the A stands for....I of course have my own version but I feel it would be impolite to share it here. Welcome to Rob Jacq Lauren and Sarah and Max in Bonnie Scotland. I'm glad my posting earlier in the day fits in with your Swiss schedule a little better, Chris! When are you taking up Alpine horn blowing?

No visit from the kids today as Honor has a bit of a cold and it's just not worth the risk, especially as I might only be a few days away from home anyway.

Day +9: Lack Of Inspiration.

And so the desert stretches on for miles and miles with little if any change. That's a bit how it feels here right now. As I began to think about what to write today I realised nothing had changed. Still got a low grade fever, still on anti sickness meds, WBC still creeping up. In fact I could probably just cut and paste yesterdays effort! There is one interesting little twist, however. As I write Nik is fast asleep on the sofa which is a bit of a role reversal from the last few days.

I suspect as I begin to feel better that the days which had passed mostly in a drug induced haze will begin to drag a little, so watch out for the magic moment when I'm no longer neutropenic and I can declare the good ship Morrison officially open to visitors! (Early next week with a bit of luck) Looking through my list of followers I seem to have attracted the attention of an over sized kitten which looks suspiciously like a refugee from a 1970's television programme. Every time I look though the Post Office Tower is still there. Joan...miracles it appears do happen! I saw your comment, not though through divine intervention but the intervention of St Anne of Malvern who pointed out where it was hiding. Chris and Sandra, Matt the registrar will not be sharing his observations following his examination of my nether regions on this blog because of medical confidentiality (taste and decency). He has however, AFIL and AMIL will be pleased to hear, given me a nice vase of daffodils for the window ledge.

I lied by the way about no new news. My hair has started falling out again and the hospital bed has the look of a well used dog couch. No fleas though, yet.

Day + 8: Green Shoots

I know it currently seems the vogue to "shoot" anyone who mentions the phrase Green Shoots of Recovery, but I think I'm on safe ground. Happy Matt announced today that my overall white blood cell (WBC) count had started to rise. This is normally the precursor to the return of the all important neutrophils which we'll hopefully see in the next couple of days. In fact he actually smiled; maybe he does enjoy his job after all. With these come all sorts of good things like feeling well again, so I can't wait. I continue on GCSF to help them along, but they've removed the Cyclizine from my anti-sick meds to no obvious detriment. (Having written that sentence I had to pause to be sick, so what do I know?)

I am begining to be alarmed by my neighbour in the next door room who is issuing horrid groaning noises at all hours of the day and night. Either he is seriously unwell, or this really is like the Tower of old and the poor chap's on the rack next door? Seriously though it is disconcerting, but things are obviously much worse for him than they have been for me so I'll just wish him the speediest possible recovery.

My food intake is still pitiful, and drinking not much better; I get nasty pains everytime I consume anything. I'm also dreadfully tired...today the combined effort of lunch, a shower a poo and a wee knocked me out for over 4 hours!