Owww then maybe ahhhh

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’s be dead honest – at times this hurts enough to cause me to squeal = owwww!. It’s 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.

After the radiotherapy I was warned there might be a flare up and I think, but don’t know, that’s what’s 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’t hate myself for it. It’s not a competition. Macho, teeth gritting and grinning and bearing is not my style.

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’s the Apple health App that’s built into IOS. It has a medications alert feature and it will update across your devices (stupidly some of the other apps don’t) Without it I would definitely be underdosing or no dosing or perhaps more worryingly overdosing. I don’t 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 “the very best of Neil Sedaka” on a long playing record or “Fred Dibner shares his Traction Engine Tips ” 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

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’t want you to do, (any kind of error as it perceives it) eg. trying to send an attachment that’s 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 “you can’t do that” – no mention of what that might be) then logs you out and you have to start again from scratch.IT IS SO ANNOYING. 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’t 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!

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’t really know why, but I don’t want to jinx it yet.

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  be reduced to some sort of moping amoeba  – and that’s not being melodramatic.

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’t like it in others but here I am doing it myself over 6 blog posts – sorry readers). It’s 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’s 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 ‘master street chef goes rogue’

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!

ahhhhhhhhh 5:21am – pain significantly reduced. This is such a treat.

One thought on “Owww then maybe ahhhh

  1. Paul Alan Barker

    For some strange reason I woke around the time you posted this and couldn’t get back to sleep. Now that’s I have written that sentence it seems like I am blaming you but no, I often wake very early in the morning although just lately I have not done so. Doesn’t sound like you are having a great time but you are lucky to have Saint Maria. I also have a version of that, thank goodness. It is difficult being a member of the weaker sex, but having a saint as a wife is without doubt a godsend. The NY saga had another unexpected outcome when I rang my dear brother to discover he and his wife have been unwell since they (probably) caught the infection off me two weeks ago. Not the greatest gift for ones family but, alas, a memorable one. Somehow I managed to get over whatever it was in 4 days before I flew back. Maria, because she has super-powers, was over it in 24 hours (cathartic attitude to illness inherited from her mum and I think a Yaqui Indian heritage. Our possibly too much reading of Carlos Castaneda. I have good news about me, or specifically about my ears, which will, of course, be crucially important to the world. My hearing aids allow me to go to noisy cafes and have conversations I thought imopossible for years and, as of last night, to go to concerts (piano quartet last night) and hear things I thought I never would again. The experience is a little like listening to the Third Programme on a transistor radio, which I somehow think you will understand, but that is better than watching musicians perform by miming or only hearing one in six notes. So, happy to share my good news. Love to you and a belated happy birthday. Xxxxxxxxxxxxx

Leave a Reply