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 🙂
