Hoping that things will start to improve but since having the radiotherapy I have spent all my time lying on my back finding ways of avoiding pain with bolsters, cushions, pillows, hot water bottles and of course drugs. So let\u2019s be dead honest – at times this hurts enough to cause me to squeal = owwww!. It\u2019s nothing compared to childbirth or many other much more painful conditions, kidney stones and shingles are supposed to be horrendous but on the scale of pains I have experienced it now at number three.
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After the radiotherapy I was warned there might be a flare up and I think, but don\u2019t know, that\u2019s what\u2019s happening. Hard to tell because any walking or indeed sitting I do sets it off, so its possible that just the hospital visit (walking around with my zimmer) rather than the treatment itself may be responsible. I can still get myself drugged up enough and in a comfortablish position for the pain to abate, thank goodness otherwise I would be in a proper state, because I am not brave I am weak but I think most people are so I don\u2019t hate myself for it. It\u2019s not a competition. Macho, teeth gritting and grinning and bearing is not my style.<\/p>\n\n\n\n
Scheduling the drugs is stupidly complicated and time consuming but I think I have found the best of a bad bunch of Apps and I will stick with that for now. It\u2019s the Apple health App that\u2019s built into IOS. It has a medications alert feature and it will update across your devices (stupidly some of the other apps don\u2019t) Without it I would definitely be underdosing or no dosing or perhaps more worryingly overdosing. I don\u2019t suppose that would be super serious but I am not in the mood to negotiate drug fuelled anarchy and psychedelic hallucinations like at a Woodstock tribute gig – my preferred vibe is more \u201cthe very best of Neil Sedaka\u201d on a long playing record or \u201cFred Dibner shares his Traction Engine Tips \u201d on a black and white television set, lying on the settee with my hotee and a cup of Horlicks. Basically I am a horizontal, bore, that watches Tv and video shows that only old guys that used to work in car parking would choose to watch, demanding 24 hour love, that squeals occasionally and moans frequently<\/p>\n\n\n\n
Talking of antique technologies, communication between the hospital and the GP might as well be by morse or carrier pigeon. All I want, is to be sure I am taking a sensible combination of pain killers and that I can collect them at the surgery (30 minute return journey) not at the hospital (90 minute return journey). The GP messaging system is a classic of absolutely appalling design that a first-year interaction design student at Hull could knock out over the Christmas break. When you do something it doesn\u2019t want you to do, (any kind of error as it perceives it) eg. trying to send an attachment that\u2019s too big a file size – rather than telling you what the issue and letting you fix it, is it simply shows an incomprehensible default error message, (something along the lines of \u201cyou can\u2019t do that\u201d – no mention of what that might be) then logs you out and you have to start again from scratch.IT IS SO ANNOYING.<\/u><\/strong> It took me five attempts to send a photo of my drug packet for the doctor to use as a reference. Too big a file, wrong file format, only one attachment per message, you have tried that once and we have cached that attempt so you can\u2019t do that again till you login again. who are you again, I HATE YOU SO MUCH YOU HAVE TO REBOOT YOUR COMPUTER – NAH. All in all I have spent the last one and a half hours trying to sort out my repeats and I suspect that I will end up with calls from the surgery tomorrow asking for further clarification. Just to add to the confusion I have only just realised that the gabapentin could take a week or more to have any effect so really I am pretty much in the dark regarding what is actually having an effect. I could be just rattling with chemicals that are doing nothing other than giving me constipation and putting me in a strop. Oh boy!<\/p>\n\n\n\n In order not to confuse things I will leave writing up a positive update on all this to the next post. Suffice to say later in the day things got a lot better pain wise. I don\u2019t really know why, but I don\u2019t want to jinx it yet.<\/em> This blog past was written in bits over the course of the day while G&A were here for my birthday. I am so fortunate to have had visits from all my four lovelies even when I spend half the time in bed being incredibly boring (see note below). They visit me in the bedroom and sprawl over our bizarre bed cover inherited from Nonna, get beaten up by a cantankerous tabby who believes he owns the bed and in concert they all make me feel a whole load better (if still boring – yes I am very conscious and a bit neurotic about being an illness bore – I don\u2019t like it in others but here I am doing it myself over 6 blog posts – sorry readers). It\u2019s now bed time and G&A have just got back home. It worked out really well having the four of them spread over two weekends it gave Maria and I lots of spread out playtime. They all got me such thoughtful pressies. It has to be said some pretty bizarre and extreme stuff but so kind. Let\u2019s just say plenty of perfect reading, one so perfect because it actually has a bit about me in it. And some oh so wacky eating materials designed specifically to cut through the neutralising taste bud killer side effects that my drugs manifest with flavours from an Asian version of \u2018master street chef goes rogue\u2019 ahhhhhhhhh 5:21am – pain significantly reduced. This is such a treat. <\/p>\n\n\n\n <\/p>\n","protected":false},"excerpt":{"rendered":" Hoping that things will start to improve but since having the radiotherapy I have spent all my time lying on my back finding ways of avoiding pain with bolsters, cushions, pillows, hot water bottles and of course drugs. 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Strangely my mood is quite jolly. I seem to be able to endure absurdist chaos better than most but on the other hand I am utterly utterly utterly dependent on Maria to keep my pecker up. Without her I believe I would\u00a0 be reduced to some sort of moping amoeba \u00a0\u2013 and that\u2019s not being melodramatic.<\/p>\n\n\n\n
I will let you know how things go over the next day (fingers crossed) and then hopefully, maybe, possibly shut up for a bit and get on with something else and stop thinking about me me me. fat chance!<\/p>\n\n\n\n