Monthly Archives: March 2017


Spasms having finally diminished back to a tolerable level, I slept for 9 hours last night. I couldn’t believe the time,  when I woke up at 10 am and realised that 9 hours had elapsed since I last looked at my watch ( just not being used to that at all )  but it had.

What ive done is to to what I’ve always done – just carry on, just keep pushing until I get there eventually.  I did know that resolution would come eventually, however long it took… and it did.  That knowledge doesn’t make it easy, but it does occupy the time until you get there.

To that end I’ve been exercising hard and been  out as much as I can have. Last night I went with Pia and Cliff, and Leigh and Bev, to Camden to see a great guy ( George Morgan / The Beach ) sing. I’ve known George since he was about 5, and now he’s almost a rock star. Look him up on YouTube/ Vevo or Spotify.

Just before leaving, Pia mentioned that the gig was ‘ upstairs in a pub, but that they were on top of that ‘ .  The hilarious reality was a portage up 4 flights of narrow stairs in a Victorian building.  To me, there is no fear of falling if dropped, because I just don’t care if I get hurt. What does concern me is the risk of injury to my ‘bearers’. If I was dropped, then for sure it would be pretty calamitous for me, but as I tumbled over and over down steep stairs I’d take at least 2 guys with me. My chair is hard and unforgiving, and could do a lot of damage to someone knocked over and dragged down steep steps, which I’d be 100% responsible for.

As it was, The Beach were brilliant, I wasn’t dropped, and the train and night bus combination worked like a dream. Thanks as always to Pia, and to lots of other people too.

Marc Almond was also brilliant this week, though I did feel like crap, and Cress was really cool in her  play tonight. My consultation in hospital went well today, and I’m all prepared for admission in 2 weeks. Thank you to my help today at the hospital, to the kind staff there who were all extremely courteous and professional.

The video is a clip of The Beach, last night.

Spasm Resolution

The point of a catheter is for urine to flow from your bladder and out into a bag or container of some kind.  For wee to flow freely, the catheter tube has not to be blocked in any way. If it is, then obviously pee can’t flow out, or flow out properly and your bladder is full of urine. It may be that only when your bladder is full, is the pressure high enough to force pee through the semi blocked tube. In my case, if my bladder is full, I get spasms.

When you get a UTI, you gets lots of sediment in your urine. Guess what sediment does to a tube? Yes, it either blocks it, or partially blocks it.  Having had a UTI, with lots of sediment that looked like it might block the catheter, I requested that the District Nurse change the catheter for a new, not clogged up one. To me, a layman with a basic concept of plumbing, that seemed like a sensible plan – pee would be able to drain freely and there would be no urine retention ( also a cause of UTI’s ).  To my surprise, the DN wasn’t convinced by the abject bloody logic of my theory, and declined to change the catheter ( on the basis that doing so might introduce an infection.  The fact that I ALREADY had an infection seemed not important, the fact that I was already taking antibiotics that would STOP an infection seemed not relevant either )

I’ve badly spasmed for 7 days and nights now, and suspected that my bladder not draining is at least possible. This morning I saw that pee was escaping from my willy, AROUND the catheter tube. Now that implied strongly to me that the tube itself was blocked, at least partially.  Having lost faith in the District Nurses, who seem to base all of their actions on whether or not they might be sued for doing something, i donned rubber gloves ( with Francesca’s help ) got another catheter ( yes, I’d ordered a spare ), sprayed iodine ( that I happened to have ) over my willy, and syringed out the fluid from the balloon that keeps a catheter inside the bladder. Having withdrawn the blocked up tube, I then watched a full male flow of pee and sediment arc into the air, that went on for 15 seconds. I then inserted another sterile catheter, syringed water into the balloon tube and observed whilst I steadily pee’d for another 20 seconds.  I think it’s fair to say that the catheter HAD been blocked, and my bladder has NOT been emptying for 5 days, giving me non stop spasms and hardly any sleep, and contributing to my UTI not resolving.

As a capable, dexterous and logical guy, I was able to deal with this ( in the end by myself ).  Had i been senile/partially sighted/non dexterous I would NOT have been able to, and would have suffered torment and sleep deprivation for God knows how long.

Yep, yet again I’ll be writing to the people in charge…  I really don’t mind the actual process of complaining….

….but I really object to the fact that I have to in the first place.

Bloody hell!

My right leg has jumped once or twice every 5 seconds for about 12 hours non stop. The left one jumps hard intermittently only. If I press on my tummy, the leg kicks hard.

I slept only when i was too tired to stay awake, and then woke at the point where my body had presumably had just enough sleep, so about 4 hours later.  Four hours is enough sleep to function on, but not enough, night after night, to make you cheerful.

I’m definitely being tested by this.

Monday March 27th

After a week of spasms, fever, sleepless nights and  mental torture, my GP has finally agreed to change my antibiotic. As I’d told them 7 days ago, Nitrofourantoin is ineffective against the UTI’s that I get.

Today I’ve taken the first tablet of a 5 day course of another drug.

Today I also attended my dermatology appointment in Hammersmith, and saw a 35 year qualified consultant dermatologist. She very quickly diagnosed me as having 5 basal cell carcinomas on my chest.  I was given 2 options – to freeze them twice so that the skin was solid, the thawing out process selectively killing the cancer cells, leaving me with 2 weeks of  5 sore, blistered areas that would be permanently pale, or using a cream that I applied for 12 weeks, killing the cells and leaving me with no scars.

Not caring about a few scars, or the pain, I opted for the fast kill approach, and now have 5 sores on my front.

I’d barely thought about this appointment until today, but  I had then come to the conclusion that I had about a 70% desire to be diagnosed with terminal skin cancer.  Having had the odd brush with death in the last few years, I now find myself regarding it as almost a friend, and certainly nothing to fear. I realise that that may sound odd, but in the way that older people who ( perfectly cheerfully and unemotionally ) have decided that they have been around for long enough and are happy to shuffle off, I feel perfectly content to go too. My 6 month long sustained uplift in happiness has not changed that ‘ relationship ‘ with mortality that I have.

As it is though, I’m not going just yet, via that route in any case.  When she said that they were not malignant melanoma  areas, as suspected by my GP, I didn’t feel any sense of relief at all, just indifference / slight disappointment !

So… tomorrow i go to a gig ( The Beach ) and Thursday too, and now know that I won’t have to give away tickets that I have for something in November.

I told one of my daughters the good (?) news, and  she seemed happy, the other one not having shown any interest in the first place, I assume may find out by chance in the future, possibly.

Kids, eh…

An extremely close friend told me, the other day, about his ( factual) theory about daughters.  At some time between 12 and 14, the aliens come and take away your lovely, smiley and sweet daughter, and in her place leave a visibly perfect replica of her, identical in every respect except that the one they leave is spiteful and selfish, cruel and hurtful, intent on upsetting you.  They keep your own daughter for up to 6 years, and then, after that they bring her back to your house and swap the two around again. He said that it’s such a relief to get the real one back that you forget all about the imposter that’s occupied her bedroom and worn her clothes for 6 years, and instead are just grateful.  As the aliens have indeed visited and carried out an exchange in my house, I’m comforted by the knowledge that my real daughter is in a safe place, being looked after  , and exploring the Universe. As it’s not my own daughter here with me, I have no qualms about chipping away at next months pocket money every time that I hear ‘ God, i HATE you!’  With every profanity, I save money, and feel no associated guilt or upset. Every parent should know about this, as it’s extremely helpful.

Wednesday is another hospital appointment, this  time a Pre assessment for my week long April admission, Easter in hospital this year.  I stopped eating sweets a few weeks back,so no eggs for me  unless they’re from a chicken.

Signing off, as spasms still in full swing until the new antibiotic kicks in, hopefully by Wednesday.




Today I’ve had thoughts of the darkest sort, the sort that I used to get often, and was very relieved to have behind me. 5 days of a combination of fever and spasms, tiredness and confused thinking, has had an effect on me.  I punch my legs hard in bloody frustration, but that doesn’t help to stop the interminable hard jerking that has been rocking the whole bed for an hour.  Going to bed early in the hope of sleep isn’t any good unless sleep is possible, and it hasn’t been at all. Taking a sleeping tablet ( for the first time in âgés )? 90 minutes ago seems to have not had any effect at all, and it’s really pissing me off, frankly.

I have no idea what to do except write this and wait and hope for sleep.


Having woken to see just how much discharge / sédiment was in my catheter tube ( a ridiculous amount ) I made the conclusion that I’d probably been put on the wrong antibiotics – something that plagued me for almost a year ( October 15 – June 16 ) for my UTI. Turning my head quickly induced spinning, and my sheets were again soaked in sweat.

Next up was the diarrhoea… and when you’re unable to move, that’s pretty claustrophobic, and beyond a mess. The smell of that,  combined with the smell of myself,  having  spent the night sweating was enough to almost make me vomit – but that really wouldn’t have helped the situation very much….

Poor Francesca is left with the awful task of cleaning me in bed, the bed itself , everything else I come into contact with, and then the transfer of me to wheelchair, the transfer of me to  shower bench, the further diarrhoea, the further cleaning up, the getting me dry and into clothes, and the tolerance of my ( understandable ) dip in mood.

Francesca copes with this stuff as though it’s a day out at the beach, and I’m eternally grateful to her for her coolness under pressure – if she were a guy she’d be in the SAS.

My spasms continued until around 10.30 pm, persisting through my French class ( where I just couldn’t concentrate ) and beyond.

Now that I’m in bed and feeling sleepy, and not spasming, the world seems far better again, but today has been a test of my resolve for sure, the UTI definitely unhinging my positivity significantly.

I hope that this sleep will be dry and uneventful..

( also thanks to my social worker for her ongoing advice, and her own extraordinary mental help during adversity )

March 22nd

Eventually, after much delay and a chunk of NHS procedural error, I do have a diagnosis of a positive UTI, explaining 3 nights of fever in a row, and a dip in my mood ( thou I was definitely the most cheerful of the 4 of us that went out to ‘ celebrate ‘ my daughter’s birthday last night, so the irony wasn’t wasted on me ).

When i wake in the night, drenched in sweat, it’s an odd one, because I can’t feel so much of me that it’s only by touching myself or the sheets with my hands that I know I’m soaked.  It’s not like I can jump out of bed and have a shower and change the sheets, so I have to do what I can to dry myself. I can get the pillow from underneath my head, so I pull off the pillowcase and use that as a towel, drop that to the floor, and then flip the  soaked duvet the other way around, so that the soaked bit is then on top and above my legs, and the dry bit is in contact with my chest.  I can’t do anything about the sheet beneath me that’s soaked, so I just have to put up with that…… so I add that to the already long list of things that I can’t let upset me…. and hope that I go back to sleep.



In the hour or so since my last post, my spasms have returned with a vengeance. Having not drunk that much water today, I think I can definitely relate them to my troublesome bladder, and just drank 5 pints of water. Having ‘ concentrated ‘ urine is definitely not a good tactic in my life, so I messed up today by not drinking the copious amounts that I normally do. I think my spasms and fever  yesterday were probably a UTI that I managed to largely flush out with litres and litres of water, but should have carried on with the Big Flush today.

Lesson learnt.

As it’s very well documented that UTI’s have a depressive effect on the ( usually ) elderly with Alzheimer’s, I reckon it’s fair to say that that ought be extrapolated to anyone who gets regular UTI’s.  When I had them for about a year, pretty much non stop, it definitely had coincided with a significantly depressive period for me. Looking back, I went from ‘ coping kind of ‘ to wishing I was dead all of the time. When the UTI’s diminished, looking back I definitely cheered up a  fair bit, a mindset improvement that has stayed with me ever since.

Having what is likely to be a UTI now, is definitely not good for my head, but at least knowing your adversary puts me in a more advantageous position.

My first weekend away then since August , and my introduction to British College events.

I couldn’t have done it without the help of Victoria and Francesca, and without the kindness of British College staff. We travelled by car, which was also a bit of a change for me. I can’t get in by myself now, or out, and I’m not driving myself… but I’ve never had a problem with not being the driver, which is just as well.

My usual dose of bad luck kicked in and I had a ridiculously spasming period that lasted for 12 hours, including my visit to the Conference and the Ball afterwards, and meant me missing the last day after a feverish night in bed last night.  As usual though, I’ve bounced back and feel ok now, except for more a more than average amount  of spasming still – never good, but I’m coping.

I saw my friend, Philippa, who I was really close to in Uni, and was undoubtedly responsible for me actually getting a degree at all – she’d loan me a whole year’s worth of notes 2 months before the exams started, and I’d spend 24 hours and a lot of money photocopying. The way I looked at it – it made perfect sense – she made better notes than I would have ( had I turned up for the lectures ).   We had a real laugh, which made up for the bad bits, and made a few new friends, including Parth and Mike, which I love doing.

I’m looking forward to seeing Jo tomorrow, and Nev on Wednesday, as well as a gig with Pia on Wednesday night in Camden, which should be brilliant.

Thursday the 16th.

My french lessons continue apace, and vocabulary  is  steadily coming back to me. The class is actually becoming a bit of a laugh, and I do my best to make crap jokes in a foreign language, as well as take the p*** in French, my touch of Tourette’s not being limited to only one language.

The toxicity of divorce is evident around me, exchanges with my soon to be ex becoming ever more rare, and when they do occur being pretty short. Tonight I was told that ‘ I’m becoming more like my father every day’ … I think that was designed to be a 2 generation encompassing insult, and now recorded here for posterity.

Aside from the verbal slings and arrows, things are pretty good all round, except for the obvious and my eagerly awaited dermatology visit.

I’ve had real laughs with a number of blokes that I’d not seen very often for a bit, including Dan, Lal, Adam  and Nick. My now daily gym sessions have also brought me into contact with more of the peeps that I used to see, as well as the host of new acquaintances that I seem to have made. Well… you can never have too many friends, can you?

I’m also losing count of the number of times that I overhear my fast Triride wheelchair attachment being referred to as ‘ sick’ by males under 23 years old.

As we b.a.m.f’s  around here say, that Triride is me trey… innit.