Thursday, 31 March 2011

Good periods, and bad periods

  • I have en e-coli infection like last time. My blood pressure stabilised quite quickly.I have been decatheterized, which is good. They keep track of my fluid I input (drink) and output (wee). I need to make sure the fluid balance is neutral more or less.
  • My diarrhoea is sort of bad, but variable. At the moment I go each time I wee, which since I am not catheterised is not really inconvenient.
  • My temperature is the problem. I cannot shake the fever. So I feel bad most of the time. Taking paracetamol brings it down temporarily,but also make me overheat, which makes sleep difficult.
  • I went for an ultrasound scan of my arm. I was lucky to get the consultant, and he checked all the major nerves. He thinks it might be an inflamed nerve, but treatment seems To be just wait anyway.


I have good and bad periods according to my temperature. As time goes on,
My counts should recover which will also help beat the infection.

My bad leg from the first infection is behaving itself so far.


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Wednesday, 30 March 2011

Still ill

Too tired to blog.
Later!


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Tuesday, 29 March 2011

Back in the land of the living

Let me try and fill you in what has been happening since Sunday morning ...

Sunday


As I explained , I awoke feeling lousy in the hotel, having slept OK. Then, I got a shiver, which is a sure sign of a raised temperature, and sure enough it was elevated, although not by so much. I rang Ambicare and they told me to come across immediately. I packed my rucksack, with the new iPad in it, and Rose cleared out the rest of the room.

When we met up in Ambicare, Rose said "I even brought the iPad".
"I thought I brought it myself in the rucksack" I said.
Lo and behold two iPads! So, it was not stolen after all, but merely misplaced. Goodness me I am not doing well eh! After the initial shock, it is actually quite funny, hilarious even. The police have been informed.

So, we now have one each, or perhaps we will sell one. Who knows!

My condition was deteriorating rapidly. I got bad riger again, and it took some time to bring it under control. They gave me two doses of antibiotics, and finally I calmed down and slept sort of. The porters arrived and took me over to the main hospital; there is a tunnel that connects the two buildings. After I was settled in, Rose left.

My blood pressure was crashing, so they infused quite a few bags of gelofusine, but my BP remained stubbornly low at 50/30. So they took the PICC line out, and kept pumping fluids. In the evening they decided to catheterise me (oh joy), so that they could monitor the fluids.

During the day I had diarrhoea, but just one off (so to speak), but at about 7pm it started in earnest, every hour or more regularly. With all the tubes, the catheter bag and so on, I could not make it to the bathroom in time, so the nurse set up a commode next to the bed. At this stage I was feeling pretty miserable.

Two things were markedly different this time from the last; my bad leg was fine, and I was not bloated with fluid. This latter is almost certainly because I had been eating much better, and my albumen level in my blood was much stronger when the infection struck.

Sunday night was terrible. Firstly, I had diarrhoea every hour, secondly, they were giving me red cells, fluids, trace elements, antibiotics and so on throughout the night. Then, the catheter is always a little temperamental when it first goes in (it leaked a bit), and of course they were taking observations every hour, or more.

The amazingly good news was that my BP stabilised at 90-odd/50-odd. This was fantastic news. The bad news was that I had had no more than 30 minutes of contiguous sleep, and I was very tired.

Monday


They kept fluids going in during the morning, and Rose arrived for a visit, but I was so tired I barely managed to keep my eyes open. In truth, I did not manage. Only the diarrhoea kept me on my toes! Rose left in the early afternoon, and although I was in no fit state to converse much with her, I really appreciated her being there.

My BP remained stable, returning to it's normal level, but my temperature was still fluctuating between high and normal. Most of the day passed in a haze, but my diarrhoea mysteriously went away in the evening, allowing me to get a couple of hours of sleep, in between the nurses going about their business.

During the night, after 1am, the nurse promised to leave me alone until 6am, and I got the best sleep so far. I thought I would be in good shape for Rose's visit today ...

Tuesday


... I was wrong. My sleep deficit was still not resolved, and I kept falling asleep. However, I was a little better than Monday. Once again, although I was not much company, it was lovely to have Rose here.

My general state is as follows: I am weak, but ambulatory, still catheterised though. My diarrhoea has not returned. My appetite is not great, but hospital food is not helping! My taste is holding up OK. I am not very swollen, but I have problem with my left arm. It is a bit swollen, because of the deep thrombosis I had there in January. These can take many months to resolve, and it's presence is making it harder for the fluids to dissipate. It is not terrible, but I have some bruise or muscle strain as well in the tricep that is making my arm weak.

They plan to de-catheterise me tomorrow morning, as early as possible. Later in the day, they plan to perform the final intrathecal that will complete this treatment cycle. Then, my blood counts should recover over the coming week, and I should be able to go home mid to late next week, for a couple of weeks.

After that, things are unclear. Originally I thought we would move ahead to the transplant, but there is some confusion over this. I asked my consultant to clarify, so I should find out on Friday.



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Monday, 28 March 2011

I am exhausted

No post today other than this. I will catch up with you when I am better.


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Sunday, 27 March 2011

Infection again

I woke up feeling lousy, and took my temperature. It was 37.6, and I had a slight shiver. I rang ambicare and they told me to come in right away. The riger got worse, and they eventually stabilised it with antibiotics and IV pethedine. 

I have been admitted to the hospital, T16 bed 36. My blood pressure has crashed, so they are infusing that expanding stuff. If they can get my blood pressure up the PICC line might be able to stay, otherwise it will be removed later.

Thanks to Rose for clearing out my room and checking out for me.

I am hoping we caught this one earlier, and it will not be so bad as last time.

Saturday, 26 March 2011

My iPad has been stolen

... and I feel like a horses ass! I went to Ambicare as usual, and left around 11:30. I had the iPad in my zipped-up rucksack on my shoulder, but when I got home it was not there.

I called Rose, who logged in to MobileMe.com and told me it was still in the vicinity. There were some policemen on the street (probably as backup for the march going on today), so I told them my dilemma. One of them took my phone, and Rose directed them using the web site. in the end, they came to the conclusion that it was in the hotel (yes, my hotel), and the police said there was not much they could do.

I filed a police report online, and I hope I will be able to claim on my insurance on Monday. But in the meantime, what to do? The only recourse is to buy another iPad. However, ipad2 only went on sale here yesterday, and nobody has them in stock. I thought I would be able to get a good deal on an iPad 1, but no. So I bought a replacement iPad 1, 3G but only 32gig this time. I never really needed 64. I walked all the way down Tottenham Court Road looking for the best deal, but ended up in PC World opposite the hotel! For my trouble I got a blister on my toe.

Rose brought her laptop in, and I upgraded the iTunes on it, then upgraded to iOS 4.3 on the new iPad, and then synchronised. I am more or less back where I was, just a couple of small apps and a book are missing, although you would think I could download these for free.

We wanted to wipe my iPad using MobileMe, but Rose's browser did not work on the site, so she called Yvonne who did the business, so many thanks Yvonne. I hope that my email account has not been compromised, and I am not intending to change it until something happens to make me. The thief only had the iPad for 20 minutes before we wiped it. Apart from the email account I don't think there was anything serious on it.

I intend to take more care of this one than the last one.

Health wise, I am still feeling OK. But I could do without this stress.


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Friday, 25 March 2011

Business as usual in Ambicare

Rose and I slept well, and breakfasted similarly. She left to beat the meter maids, and I went across to Ambicare.

My treatment was over quite rapidly, but I had to wait quite a long time for the doctors. I am getting jittery about being neutropenic, and I can imagine pains in my bad leg. I keep taking my temperature and so far it has not gone above 37. Like so many things, the mental side of this is becoming as trying as the physical side.

I have been in the hotel over three weeks now, and I am starting to long for home. But it seems that after my treatment finishes on Monday, I will have to stay here for about another ten days whilst my blood counts recover. It may be less, it depends on how well I do, and how bad an infection I get (if any). It is better than being in hospital, but I really wish this cycle was over.

Prof Kwaja, my consultant, was passing and said hello, so I quizzed him about next steps, and it seems there is some extra chemo cycle that I must do after this one and before the transplant. He was vague, but it means my treatment will extend longer than I had been thinking. When I know more I will share it with you.


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