The Beeb now have hold of the story...
Leicester Royal Infirmary closes wards over swine flu.
Still no signs of the disease in yours truly.
Neutrophils now 0.00 again (as per Cycle 1), so no infection resistance. Was in Day Ward again today, was sent home yet again and was informed that the daily in-out would continue into next week.
Monday was spent in the Day Ward having bloods taken and tested. Neutrophil level was clearly on the way down (0.28). Sent home.
Tuesday was spent in the Day Ward having bloods taken and tested. Neutrophil level was even further down (0.06). Sent home.
Today was spent in the Day Ward having bloods taken and tested, and having two bags of red put back in. Neutrophil level was way down (0.04), lower than when I was urgently admitted back in December. The doc said that he would admit me, but he was over-ruled by my specialist consultant. Sent home.
Thursday I have to attend the Day Ward yet again, having bloods taken and tested, and probably having a bag of platelets put in. Neutrophil level will probably be rock-bottom. No idea what the outcome will be.
Why no admission?
Well, there's a slight problem on the Haematology Ward...
Why the notices and restrictions?
The ward has 21 beds (4 rooms of 4, and 5 singles). The last time I was given any official figures (Tuesday) there were still 15 patients in there, and 8 of them had confirmed H1N1.
Apparently the plan is to get those 15 safe in order to allow decontamination of the ward, so there is a lot of bed-moving and territory negotiation involving other wards. Looks like new/re-admitted Haematology patients will be going downstairs to Oncology. Where the Oncology patients will be going I don't know.
Until the plan has been executed, it's allegedly safer for me to be at home and to travel to and from the Day Ward every day. I'm not entirely convinced.
Meanwhile, every Day Ward appointment means that Chris has to blag another day off work to drive me and my kit hither and thither. Public transport is a no-no due to infection risk, despite me being the only occupant of the train carriage when I broke the rule on Monday.
Men Behaving Baldy.
Nick V-G., Uncle Fester and Michael N.
Photo by Nick.
Woohoo! - they've finished poisoning me again! Saturday morning I had my final dose of chemo for Cycle 2. It was a "3 & 8" chemo regime, similar to the "3 & 10" previously inflicted. Later they let me out for a short respite at home, partly because I'm in rude health before my blood counts start to crash, but mainly to free up a bed for at least two nights. Back in for a Day Ward appointment on Monday.
It's not much but at least I get to watch the rugby in comfort.
It's Consolidation time.
My respite came to an end on Friday when they admitted me for Cycle 2 of chemo. To be fair, the consultant was willing to let me have the weekend at home and to come back in on Monday, but I gave him the option of starting early and he took it, primarily because it would be easier for me to get a new PICC line inserted on Friday than on Saturday, Sunday or Monday.
Anyway, we're up and running now. Only 8 days of chemo this time (with the same poisons as last time), so it shouldn't be too bad.
Respite.
That's what we all want to hear. It means spending some remission time at home. To get it, all blood counts and infection markers have to be at safe levels. It's nowhere near "healthy", more like "better there than here".
It is conditional... get a temperature-spike, or a snivel, or the squits, and it's "get back to hospital ASAP" time. Get neutropenic sepsis and it's critical, antibiotics within the hour or it's all over, the fat lady sings and I go on to mime at the back of the choir invisible.
And there's the discharge process. That's far more challenging mentally. You may well be told mid-morning that you are OK to go home, but it will be afternoon when your discharge letter arrives, and usually after 6pm when Pharmacy lets you have a full set of meds (whether you already have enough or not) which you may or may not need at home. If you are allowed only 1 day of respite, you've just wasted most of it because you'll be expected back in the next day at 09:00 sharp.
I qualified for respite on Tuesday 26th and left at ~8pm with 2 sets of meds. I'd need to attend for an outpatient blood-test on Thursday morning to check that I'd be OK to have another bone-marrow sample taken on Friday morning. Oh, and I was to bring an overnight bag and all meds, just in case.
They found "elevated infection markers" (high CRP) in the Thursday blood and decided to admit me again. The overnight bag was OK for, well, overnight, but only for the one night. When they decided that I'd be in for Friday night too, Chris had to drive home, gather all I needed for another long haul, and then drive back to hospital. And yes, you guessed it, they discharged me again on Saturday morning, having not found any infection. And they also gave me yet another full set of meds to weigh me down.
I'd need to attend for an outpatient blood-test on Monday morning. Oh, and I was to bring an overnight bag and all meds, just in case. Sound familiar?
Well, once bitten, twice shy. We packed the car with an overnight bag and the huge box of meds (by then I'd got at least 3 of almost everything), and also stashed a couple of long-haul bags (clothing/food/drink/entertainment for a week) to be grabbed if required. We were prepared for WW3.
This time the bloods were fine. No treatment necessary. No overnight bag necessary. No huge box of meds necessary. No re-admission. Just more respite and a blood-test /outpatient appointment on Thursday 4th, when I should find out when I'll have to start Cycle 2 of the chemo (they call it "Consolidation"). No doubt it will clash with the 6 Nations 🙁
I'll take my overnight bag, a few essential meds and no more. If they want all of my meds, they'll have to send a porter.
I think that I broke the rules yesterday. Respite is usually regarded as rest/recovery at home, with the knackered victim patient tucked up in bed having all needs attended to by family/friends/carers. I decided to go off-piste. After a walk into town and back I felt fine. So fine that I then walked to my GP's surgery and back. And just for good measure, in the evening Nick and I walked to the Red Lion for 2 or 3 pints of the black stuff, and still walked back.
Now that's what I call respite 🙂
