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| Blood cells - which disappear just when you need 'em. |
The same - or different?
Time will tell. One thing I have learnt is not to under-estimate the side effects and the neutropenic stage of the chemo which can be more disturbing by far than the actual chemo itself. What is apparent is that each person reacts differently so there is no formula for treating these side effects because they may not happen, or new ones might appear. But with the benefit of hindsight it should, in theory, be possible to head off some of them second time around; for instance, prompt infusion of blood and platelets rather than waiting for non-stop nosebleeds and zero cell count. One to discuss with the docs I guess.
A long week
My week+ back on D3 was a mixed bag; officially still infectious I was treated with the yellow apron/white glove approach. Luckily my Norovirus didn't make me vomit from start to finish (and nobody is quite sure when it started and from where I got it, nor when it officially ended - which is officially 48 hours after last signs of symptoms').
I added gout this week to my long list of ailments whilst in here. Not a bad attack - I remember having an extremely painful attack of it a few years back when it was so painful I couldn't put a sock on or even touch the red hot big toe with a bed sheet. But they jumped on it (metaphorically speaking) pretty quickly and it seems to have disappeared.
Back in my sideroom on D3, in familiar territory, is good. A little quiet (not helped by my deaf ear) but it has helped with my ability to get a good night's sleep; one night a rather enthusiastic agency nurse woke me up at 2am to take blood pressure/temp etc but painfully slowly and with the b****y light full on so wrecking any chance of a quick return to slumber. But for the most part, the night staff tend to leave me alone as far as possible.
A source of frustration has been the ENT department's reluctance to attend to my ear. I have been receiving 'softening up' drops for a week but only after much pestering (more of this word later) did I get an actual appointment. As far as I was aware it was a simple case of syringing out and I would be back to full hearing...
I have noticed that Southampton General suffers from London Bus Syndrome; you wait for hours then they all arrive at once. You can be left alone to your own devices for hours on end. Then by some kind of Sod's Law if you have some kind of unforeseen procedure, often involving being wheeled to another art of the hospital for an X-ray, scan, intrathecal or whatever, you can bet you bottom dollar that lunch or a visitor will arrive just as you are wheeled out of the room.
In the case of last Wednesday, someone fixed my long-awaited ENT appointment on two floors up for 1.30pm, followed an hour later by an intrathecal (lumbar puncture chemo) three floors below. Optimistic? Somewhat - because the two were effectively one after the other and because the latter procedure meant I had to lie flat on my back for an hour afterwards, I was wheeled in my bed and left in a corridor outside ENT at 1.25pm. My 1.30pm appointment, after (more) pestering and anxious wait, being ignored by all and sundry, turned out to be at the end of a 'more urgent' queue, an hour and a quarter later. My ear was duly syringed; but alas no sudden return of hearing. Instead I was told have an infection in that ear (can't be helped by a two week wait to be seen), to take some drops which, as they work will get rid of the infection and my hearing 'will return'. They want me back for 'review' and more syringing five days later.
So by this time I was well late for my intrathecal and nobody knew whether to send me back to my ward or to the intrathecal ward. They opted for the latter, where I was told I was an hour early, was taken back to D3 and twenty minutes later enthusiastic porters arrived to wheel me back yet again.
Another long wait for the doc, then the news that I could not have the intrathecal after all because I was inadvertently given an anticoagulant the previous night, so too dangerous. Bordering on farce, I was (eventually) wheeled back up to D3. A completely wasted afternoon and not one to improve my 'morale' (officially declared low) or my faith in the internal comms here.
I had the intrathecal the next day; the previous three or four I have had have been relatively painless. A needle to put in the local anaesthetic, a longer needle inserted to rummage around in my spinal column, draw off a small amount of spinal fluid and replace it with chemo. The occasional coming together of the needle with a nerve, causing an electric shock to send a shock down a leg, some discomfort but on the whole not the worst thing in the world - until today's procedure.
By luck, and a degree of luck or clairvoyancy, I was given some gas and air this time. A 45 minute procedure went on for a miserable two hours and twenty minutes and was very nearly abandoned. They had trouble locating the right spot with the needle and once in could not extract any fluid. Eventually, after I had drained a gas bottle and was feeling highly emotional and sore, they succeeded, thank goodness, and an extra large patch applied to my sore, pin-cushion, back. And five days later I have another one of these?
Feeling Low
The next couple of days involved nothing much - no procedures except for a fifteen minute 'push' of chemo. Side effect or not, I was starting to feel very low in myself for no apparent reason. So when, on Friday, the Prof declared that I could go home for a short weekend, it was just in time to prevent me going bonkers. The news sustained me for the 24 hours required to wait until released on the Saturday lunchtime for 30-hour respite in the comfort of my own home with my darling wife and dotty dog.
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| Home sweet home. |
Gout? Better make sure they replace that Merlot with some genuine red cells next time they hang the red bag on Horace.
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