Freedom!

At last, yesterday early evening, I escaped hospital. The doctor had told me on Tuesday that I was 99.9% certain to be able to leave yesterday, but I didn't tell you lot because I didn't want to tempt fate, particularly as that 0.1% has a nasty habit of proving vital... And it seemed as though it was once again going to ruin everything, when my morning blood count showed an increase in one of the liver counts. I got sent to Scanning for an ultrasound scan... but fortunately it was fine. So finally I was given the All Clear, and rang Sue, who very kindly drove up and brought me down to the South Coast.

My arm is still proving quite difficult to straighten entirely (due to the PICC line), though it generally isn't as sore as it was. Partly that may be due to the poultice I had on it (looks like mud, smells like Vick's) for 24 hours, or perhaps my arm is getting used to it and the mechanical irritation (that's the technical term) is easing. I have to go back on Monday, to the Day Unit, for a blood test, particularly because that liver count was a bit up, so I think Michaela's going to have another look at it then and might have to take it out (boooo!).

Excitingly, it seems I should be able to make it to the OMV Autumn Drinks Party on Friday, which I am very pleased about. My legs aren't as strong as they used to be, though, so if you're there and I insist on using a chair, don't take it personally.

I have lots and lots of emails to catch up on, so I'll slowly work my way through them - if anybody needs to know anything urgent then let me know and I'll try to get back to you asap.

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Date: Mon, 23 Oct 2006 22:40:45 +0000
Subject: And then there were 1
x10^9 neutrophils! Quite a leap from 0.4 yesterday. Hurrah!

And the beat goes on...

Sorry I haven't updated for quite a few days - it's mainly because nothing seemed to be changing and I was waiting in hope for something to break the cycle... Still having a low-grade fever, and with an infection marker showing a possible bug, I was still getting antibiotics and starting to wonder whether I'd ever get out. My neutrophils were down to 0.0 and I did indeed have a PICC line put in.

The line went in easily enough, and has been working fine, but unfortunately there's been some 'mechanical irritation' - my upper arm is swollen and pretty sore. Michaela, who put it in, will hopefully have a look at it tomorrow, but I'm not quite sure what the options will be. The doctor mentioned something anti-inflammatory, though I haven't had it yet, or they might have to take the line out. Which would be very annoying! I don't have much luck with lines.

Meanwhile, my neutrophils are climbing (0.4 today) and the high infection marker is falling, so hopefully my temperature will come down too. The doctor seemed quite positive about that, particularly because if there is any infection, the neutrophils should now be able to whack it. Hurrah for neutrophils! However, we all know by now that nothing is certain, so I don't want to get excited about getting out just yet.

One excitement this week, though, was meeting the Mayor of Wandsworth, who had heard a couple of ex-RMU patients extol the virtues of the ward, and decided to visit. I was nominated as one of the patients for him to talk to, so in he came with his white hair, beard, enormous height and massive bling. Well, his mayor's chain. He seemed a nice feller.

Another excitement I'd LOVE to be out for is the OMV Autumn Drinks Party this Friday, particularly because of last year. I went along, a couple of days before my appointment with the haematologist, and was quite soon a bit of a wreck, ending up in A&E because I was in such agony. So I would love to be able to make a healthier appearance, to show how much better I am, rather than my friends thinking 'remember last year, George was very ill... Is he here tonight? Oh, no, he's still in hospital'. It would be a psychological boost, as well as lots of fun...

I'll keep you all updated on anything that changes - hopefully as soon as possible!

The End of the Line

They seem to have vaguely sorted the temperature - admittedly it's a bit temperamental, veering between very warm and a bit cold - so life's a bit more comfortable in that sense. It does still sound as though they're building another hospital upstairs, though, so daytime sleeping isn't quite as easy as I'd like... And no, I'm not just lazy - it's as impossible as ever to get an uninterrupted night's sleep, particularly when Obs are joined by antibiotics being given at ungodly hours.

Anyway, last time I wrote I was probably spiking temperatures every so often, and the culprit was named as a small infection in my line. The doctors were giving me the right antibiotics for it, but it was stubborn, so on Friday the decision was made to take out my Hickman line. This made sense, but was nevertheless a sad occasion, as it has served me well and saved me from hundreds of jabs...

Since then, my temperature has stayed down, and I had hoped to be finishing my antibiotics today. Unfortunately, my consultant seems to be in no rush to stop them, so it looks as though they're still on the menu.

Over the weekend I had a horrible cannula in the back of my right hand - other locations had failed, so it was left to that tiny vein to take all the antibiotics coming in. Ouch! Fortunately that came out this morning, and the plan currently seems to be to give me another PICC line - remember them? I don't have enough treatment left to make another Hickman worthwhile, but a PICC will save my veins from regular cannulas. So it's good!

As cold as ice

The most significant thing to happen since I last wrote has probably been the night I spent in the Day Unit. Room 1, having been quite toasty generally, suddenly became absolutely glacial on Sunday evening. I think it was approaching absolute zero.

Somehow I survived Sunday night (sleeping in my dressing gown and woolly hat, with at least 4 blankets), but on Monday I realised just how cold the room was, and spent the entire day out on the ward. The kindly Day Unit even let me squat in one of their comfy chairs! The engineers had been called regularly throughout the day, but never appeared.

So night-time arrived, and the nurses agreed that there was no way I could be expected to sleep in the Room 1 freezer... So, the Day Unit it was! It's not really designed to be slept in, but it was lovely and warm, and I got a good night's sleep, as well as a slight frisson at being somewhere I shouldn't really have been...

The one drawback was, of course, that being the Day Unit, it needed to be used during the day, so at 8am I had to leave my warm sanctuary and venture back to the Arctic. Fortunately by now another patient no longer needed their portable heater, so climbing into bed in Room 1 (again armed with 4 blankets, dressing gown and woolly hat) was just about bearable.

And now at last they seem to have sorted the heating out! My room is at more of a normal temperature, and I can control it to some extent with the portable heater. It did mean, though, that having gone to bed all wrapped up in blankets etc, I woke up bakingly hot! You can't win...

As for my own temperature, it seems generally to be better, though whenever I think it's settled down for good, it seems to spike. It hasn't for a couple of days now, so fingers crossed. I did wonder at one point whether my room temperature had been dropped so low in order to try to keep my temperature down!

I've been a bit less fed up with being in since I've been off IV fluids, and therefore able to wander the ward, but it is frustrating not having any idea when I might get out. Soon, I hope!

Just when you're ready to go...

Bizarrely, there must be some little chip inside me that really likes staying in hospital. Almost as soon as the possibility of getting out for the weekend arose, my temperature went up and my blood pressure went down... My white blood counts are good, so they're not too worried, but to be safe they've got me on antibiotics and a saline drip. On the plus side, the nasty diarrhea I had seems to have cleared up.

I assume the plan is to carry on with the antibiotics etc until my temperature and b.p. are definitely settled, and then hopefully if my blood counts are at a good level they might let me go. I don't know when that will be, though.

Today I've been pretty restricted by having at least one, and usually two drips plugged into me all day - between saline, antibiotics x2, potassium, magnesium and anti-sickness my in-tray has been quite busy!

Good news! Bad news...

Good news! Consolidation 3 is finished.
Bad news... I can't go home yet.
Good news! I can probably stay with friends locally for the weekend.
Bad news... I'm moving to tiny isolated room 1 (ext 2560) this afternoon to free up my big room 7 for someone coming out of ITU.

Sleeping the sleep

All is well. Though I do have somewhat low blood pressure. The natural nursey reaction is to tell me to drink more, but my fluid balance charts show that I've been drinking quite effectively, thank you very much. I don't think it's anything worrying, and it might just be because of the chemotherapy , but I do wonder whether it's linked to me feeling pretty sleepy recently. Last night, for example, I must have slept for over 12 hours, but still dropped off again this afternoon...

Now, those who know me quite well might be surprised to hear this, but I'm actually slightly scared of sleeping too much. I guess this has only really been the case since I've been ill, and the logic seems to go something like this. If I sleep an hour longer every night than the night before, eventually I'll reach 24 hours sleep, and I'll never wake up! So, much as I enjoy sleep, I can't help but feel very slightly worried about sleeping too much. It's only a very small fear, but thought it worth mentioning.

Otherwise no real news. The food is still the worst thing I have to put up with, but fortunately good people like Cat and James exist, who restocked my fridge yesterday. I've only two more days of cytarabine, and then finish this phase on Wednesday with the last tioguanine (which is the tablet chemo). HOPEFULLY they'll let me out soon after, though they may wait for neutropaenia to come and go. We shall see.