Day +7: Hello Again

OK. So it seems that whilst I was asleep the US got a new President and many of you have me down as a closet Lethargian. Poor Nik had to fill in quite late last night when it became clear I was struggling with extended periods of consciousness. I've been more alert today, especially this morning and I think have felt generally the best I have got a while. (You know how it can be you only realised you were feeling under the weather when you get better as you're knowledge of normal becomes a little skewed.)

So to today. My platelet count has dropped very low and so I've has another transfusion of those. The reason for the concern is some bleeding I'be been experiencing and led to the joy of Happy Matt the Kiwi registrar looking up my bum with a torch! Anyway he saw nothing amiss (Matron!) but prescribed the transfusion to be on the safe side. My counts generally are off scale low, in fact I have so few neutrophils the machine can't find any. The docs constantly tell me that my sense of well-being will return when those blighters start showing up in big numbers again. Fingers crossed that will be in the next couple of days now. Maybe by the weekend I'll be up to seeing the kids, as it will have been a fortnight by then. Mind you tonight they could barely drag themselves away from The Simpsons to talk to me, which means all is normal in their world, which can only be a good thing. Is this how they imagine me? Doh!

Day +6: Late Edition

Nikki writes:

So while the rest of the world proletised about the new President turning the tide of history, Rory remained becalmed in the strange world at the top of The Tower. It's starting to feel almost fable-like, (fabulous isn't the word). He really did feel adrift today I think. I couldn't visit because I was unwell this morning and couldn't take the risk, and he tells me that he hasn't turned the computer on all day. So this is his message in a bottle.....

The sickness has improved if not entirely dissipated, but the two drugs doing all the business are heavily sedative, to the point that today he'd slept for so long that they actually lifted his eye-lid and shone a torch in his eye! Not the most flattering gesture ever made. The drugs are also anti-psychotics so at they are at least determined to send him home sane. Then there was the visit by the palliative care team, no more endearing, but it was simply to see if they had any tricks up their sleeve when it comes to controlling the vomiting.... they hadn't.

And now, as "Happy Matt" the Kiwi registrar put it, "it's unfortunate" that not only has the top half of his gut suffered, but now "the bottom half's gone as well". We call him Happy Matt because he's the man who has to remind you of all that can go wrong before they do anything. He seems almost embarassed about this and so erms and mutters making it seem to go on and on. Still as you can see, at least he's mastered the art of English understatement.

The dietician has also been in today, again ostensibly to make suggestions but I sense Rory's not impressed. Nevertheless he's managed a couple of spoonfuls this evening.

And so when in future years our grandchildren ask, where were you when the first black President of the United States was inaugurated? Rory will be able to read this and tell them.

Day + 5: The Doldrums

In one of my favourite books when I was a child, The Phantom Tollbooth, the small boy at the centre of the story, Milo takes a wrong turn and ends up in The Doldrums where he meets an odd group of people called the lethargians, who live by very strange rules...

"Well, if you can't laugh or think, what can you do?" asked Milo.

"Anything as long as it's nothing, and everything as long as it isn't anything," explained another. "There's lots to do; we have a very busy schedule-

"At 8 o'clock we get up, and then we spend

"From 8 to 9 daydreaming.

"From 9 to 9:30 we take our early midmorning nap.

"From 9:30 to 10:30 we dawdle and delay.

"From 10:30 to 11:30 we take our late early morning nap.

"From ll:00 to 12:00 we bide our time and then eat lunch.

"From l:00 to 2:00 we linger and loiter.

"From 2:00 to 2:30 we take our early afternoon nap.

"From 2:30 to 3:30 we put off for tomorrow what we could have done today.

"From 3:30 to 4:00 we take our early late afternoon nap.

"From 4:00 to 5:00 we loaf and lounge until dinner.

"From 6:00 to 7:00 we dillydally.

"From 7:00 to 8:00 we take our early evening nap, and then for an hour before we go to bed at 9:00 we waste time.

"As you can see, that leaves almost no time for brooding, lagging, plodding, or procrastinating, and if we stopped to think or laugh, we'd never get nothing done."

"You mean you'd never get anything done," corrected Milo.

"We don't want to get anything done," snapped another angrily; "we want to get nothing done, and we can do that without your help."

"You see," continued another in a more conciliatory tone, "it's really quite strenuous doing nothing all day, so once a week we take a holiday and go nowhere, which was just where we were going when you came along. Would you care to join us?"

"I might as well," thought Milo; "that's where I seem to be going anyway."

I have become a lethargian I think but mainly through the meds they're giving me. I've slept most of today away and am not great company for poor old Nik after she's driven into London. Other excitements: the nausea may at last be under control, I've not been sick all day. I had a platelet tranfusion yesterday as mine had got critically low. And just before midnight I was wheeled down to x-ray so they could see if the infection is sited there. That was an odd experience suddenly sitting in a waiting room full of people who'd broken bits of themselves on their way home from the pub! Now if you'll excuse me I'll have my mid evening nap.

Day +4: Infection

They told me it was inevitable but even so part of you still hopes it won't happen to you. I am not however a medical miracle so late last night my temperature started to rise slowly but constantly until it got to a high point of 38.5 degrees, at which point they decided they needed to take some action. I was reviewed by the on-call doctor and put immediately onto intravenous broad spectrum antibiotics. So far these seem to have had the desired effect, my temperature has now come down to 37.5. The scarey thought is how quickly these bacteria move to take advantage when your defences are down. The doctors think this may have been a break away faction of Mr Yakult's friendly bacteria high on drink and drugs who got involved in a killing frenzy. The reason for this is that the Melphalan I took (was given) has caused my intestines to become thick and less flexible and therefore prone to tearing allowing those normally tasked with doing good things to turn to the dark side.


The rest of my world: still can't really keep anything down so they're now threatening to start feeding me, which I can't say I'm really happy about. If they can just resolve the nausea things would be so much better all round.

Day +3: Blogging by proxy

No not some new form of Munchausen's but as today has been a similar uphill stuggle Rory has asked me to write something for you on his behalf. It's the first day I haven't been able to visit so I'm pleased to be able to do at least this. Nausea and sickness have remained the problem, but they've increased the number of meds he's getting through the pump in the hope of getting it under control. He has managed one of those foul body builder milk shakes so possibly they are having some success, mind you the ice lolly defeated him so who knows? The side effect though is that he continues to be very drowsy. During one wakeful moment however he did manage a shower, important for infection control, and to move rooms! Not sure of the motivation but it brings him closer to the nurses station and I suspect the other transplant patients. He tells me that the fab view of London has been largely obscured by a flat roof although I somehow doubt that's a big deal right now. It seems that the neutropenia and the sickness have come on a little earlier than some might have expected, the hope is they will pass sooner and those precious stem cells do their engrafting sooner too. Rory and I have a 1 - 10 scale for how rank he's feeling, yesterday was an 8.5, today is 7.5; his temperature remains in normal bounds and most importantly he's still positive....if dopey. Please keep the comments coming, they really do make a difference. Love Nik

Day +2: Neutropenia

Ah! The Tower, the place where for centuries enemies of the state were incarcerated for the good of the nation. Well my modern day equivalent is certainly nowhere near as picturesque as this, and the reasons for my incarceration are all for the good of my health. It was confirmed that as of this afternoon I am now neutropenic; my immune system is in no shape to repel any would be opprtunistic infections that come along. So I've got to watch what I eat and they'll start to grow cultures with my blood to try and pick up any nasties before they do any real damage. It really becomes a numbers game from here on in as we count the number of neutrophils and platelets on a daily basis until they bottom out and then quickly (we hope!) recover. I'm not sure when I'll hit the bottom, but I'd like to think that by next weekend I'll be on the way up again. (But let's not count chickens) It's been another day battling nausea and basically just being quiet and still. I'm hoping this will resolve soon. There's a cracking view from up here...

And here I am zoned out in my new room. Not as nice as the Radisson but ok.

Day +1: The Tower

So, like a medieval miscreant I have been banished to the tower. This is where the transplant ward is up on the 16th floor. It was decided it was for the best that I come in now as my blood counts are coming down and I'm still feeling pretty nauseous most of the time. I'm now on constant medication to help with this. The upshot is I'm pretty sleepy, so a short post today. Hopefully more details and a few more pics tomorrow.