I went just down the road and under the subway earlier, to get me to the Thames in time to see the  Boat Race, or more accurately a few seconds’ view of it, after which they’ve gone by and are receding from view.

As I was watching it on my phone in advance of them getting to where I was, I was surprised when they suddenly appeared, about 2 minutes before I expected them to.  I hadn’t realised that there was a 2 minute delay in the coverage compared to real life. It did strike me as a bit odd,  until I thought about it. It’s only a theory but I think perhaps they were guarding against live televising a terrorist incident, or that WW2 bomb going off near Putney Bridge, which would have made a fair bit of mess ( as it was intended to by a different enemy 75 years ago ).  Happily, there was no such disruption and as usual it wasn’t really very exciting, with one team leading from start to finish.

Amazingly I am today spasm free so far. It’s been a long time since I have been able to say that. I’m in the chair that stands me up and I’m not hanging on whilst I jerk around, which hasn’t happened for ages. It’s not clear as to why, but I suspect the passing of the UTI and not being blocked up ( bowel wise )  combine to make my body more at ease. It’s not as though I’m sleeping  well, and I’m still waking up in the night drenched in sweat most nights, including last night  ( no idea why ) but today London was warm and sunny, so perhaps that just agrees with me ?

Tomorrow I go with Marky P, Pat and Jo to the RGS to hear one of the guys from the ‘ Mutiny ‘ series on Channel 4. The voyage of Captain Bligh, after his ejection from the Bounty by the mutineers was recreated, albeit with a support boat not far away, for TV.  Unlike the real thing 230 odd years ago, no one was going to die from starvation or being shot or being eaten by cannibals or from falling ill, but hey. It’s definitely the sort of challenge I’d have enjoyed, although I don’t think that sailing whilst a bit hungry or thirsty, and with an annoying Scouser in the crew for a few days before he was kicked off ( rather than shot ) with the safety boat a few hundred yards away, can have been too hard.

It’s all relative, hardship, and depends on your own experience and psyche.

Good morning sunshine.
How is sunny Chiswick?
I feel like I haven’t been over in ages.
I relate to your alien stories. ***** is 21 and it hasn’t got any easier. You may want to consider a longer time period attached to the unnatural behaviour ?
It’s probably easier for you and I to cope/accept this behavioral style, since we were both so goddam awful.
***** (goody 2 shoes) can’t fathom how these boys can behave the way they do. My boys are no worse than I was.
I can always predict what they are going to do and what they are up to. Because I did it all myself.

Love and kisses.
***

Having taken the 6 year sabbatical during the ages of approx. 13 to 19 yrs, I can report that I thought it was an awesome time in which I totally knew better, and was way smarter than anyone else in the world. Lucky for me, having actually continually fucked up in that period and having been an utter nightmare to be around, I was able to resume to normal life and carry on without retribution, due to the kindness and good grace of others.
Just affirming the phenomenon, and wishing you patience and wisdom as you endure xx

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.

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.

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.

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 )

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.