I am feeling better, though a strange pattern has arisen where urinating becomes more difficult as the day progresses. As the antibiotics start to take effect I guess it is something to do with the operation itself.
I doze peacefully and lay in bed until around midday – something unthinkable in normal times. I am roused by a parcel. It is a small hamper of goodies from my colleagues at work. More kindness which raises my spirits.
Out for a walk, the usual 30 minute round trip to the ford at Little Lawford and back. There are some other people there but they go quickly and I linger a while. I walk back and there is a lovely breeze. I feel I can breathe for the first time in a while. I need to build some stamina.
I manage to get some work done. It is nice to feel that I am making a contribution again.
Not having driven for 10 days and following the operation I want to ensure that I am up to the task. Conveniently, Lesley is a driving instructor so we go out and I do a few emergency stops in her dual control school car. Everything seems OK and she passes me fit to drive. I wonder if other road users feel the same way?!
I had indeed ordered the 1969 move The Battle of Britain. I watch that in the evening. What is it about Second World war aerial combat tactics which is so enthralling my mind at present. There must be a deeper meaning – or maybe not!! The L’Arpeggiata improvisations on Handel also arrive.
I finish the last episode of Children of the Stones. No naff monster, loads of loose ends and unanswered questions. That’s life. I’m glad they didn’t cop out!
Despite the overnight heat I am sleeping well. It seems to be a facet of the antibiotics.
I get an early morning call from the hospital to say that the lab has detected not one but 3 infections! No wonder things have been difficult. My consultant suggests an antibiotic but I tell them that I’ve already started with a course from my GP. They are happy with my prescription.
I take the opportunity to confirm the time of the next scan – 3:15 on Tuesday at St Cross. Now Royal Mail can do their worst. Actually now I come to think about it I haven’t received a credit card statement for this month!
As luck would have it this scan notification arrives promptly through the post.
I go out for a quick 5 minute ride on my bike. The muscles working gently make me feel good and he breeze as I travel along is welcome.
I am reading Jonathon Green’s Voices from the Underground about the experiences of the participants in the 60s Counterculture. As I read I realise why I first abandoned reading it a few years ago. You can clearly see the makings of our self-obsessed, egotistical and narcissist culture. ‘What am I going to wear’, ‘what drugs am I going to take’, ‘how can I expand my consciousness’. I..I..I..I.! All under the thin guise of a collective community approach. It also reeks of sexism. But here is the irony. There was much more of a collective spirit among the wartime fighter squadrons I have been reading about, along with the wider community in which they were embedded. Green’s book is getting tedious so maybe it will get abandoned for a second time!!
Lesley admits that she is scared for the future. A feeling of uselessness washes over me. There is absolutely nothing I can say. I do not know the future. It is a blank to me. Any words of consolation or encouragement are dry and dusty – and Lesley knows it. It is a painful moment.
Nick calls me. How terrific to hear his voice. Nick is a life-affirming kind of guy. No matter how bas life is treating you, it feels better after speaking with Nick. Even if life is not materially better than before, it feels that it is so….so it is! We talk of many things including interesting points of similarity between my blog-writing and his techniques of writing part of his PhD. He asks if I had considered composing. I had dismissed it up to now. But……..hmmmmmm!
In the afternoon I tidy up the patio and outside paths of weeds. I had applied some weedkiller but in all honesty most of the weeds have frazzled to death in the heat anyway. A job that would have taken me about an hour now takes me around 4 hours as I stop to shelter from the sun and heat for a while.
I have an interesting thought. Maybe in the future cancer understanding will be so advanced that it will be just managed as a part of life, just like puberty or the menopause. People might say ‘I’m going through my cancer phase at the moment’ and just get an injection every fortnight until it passes!
A more prosaic thought. How long do I leave it until I start chasing the date and time for my new scan appointment?
I continue with the Children of the Stones episodes. What a little treat to look forward to at the end of the day.
My peculiar obsession with the British and German action during the Battle of Britain endures. Having finished reading The Hardest Day I order another called the Narrow Margin (which provided the factual basis for the 1969 film The Battle of Britain – which I may also get). At the same time I order Handel Goes Wild, a collection of improvisations on Handel tunes by Christina Pluhar’s L’Arpeggiata together with one of my absolute favourite clarinettists Gianluigi Trovesi. Some people hated it – so I bought it!! Reading about Spitfires has not sent me totally Gammon at least. Phew!
11:55 am. Rugby Central Surgery. The doctor indeed diagnoses an infection so more antibiotics. I see the same doctor who sent me for the initial tests – she may have saved my life! I get the prescription filled and hope for the best.
I pop into work and with Lesley’s help I deposit my struggling laptop and retrieve the desktop machine for work at home. The car journey is welcome.
Back home and some post has arrived while we were out. Oh No!!!! My next scan was scheduled for THIS MORNING!! Royal Mail took 5 DAYS to deliver the letter. So much for the efficiency of the private sector! I start calling the contacts I have at the hospital. I eventually speak to my consultant’s secretary and she promises to sort things out. I can only wait.
Dejectedly I set up the desktop and configure it to let me access work files remotely. Things appear to be getting better until I come to access a vital piece of software and find that the suppliers have screwed up the licence. I am locked out. I send them an abrupt email. That’s it, I’ve had enough.
I start my antibiotics but am fully aware that it will be at least a day before they start to take effect.
In the evening I recall Trade Secretary Dr Liam Fox on the TV last night extolling the virtue of free trade and the opportunities that gives for improvement in public services. I feel an urgent need to take his Doctorate certificate (whatever slot machine he clearly purchased it from) and ram it so far up his arse that he feels the same physical pain I feel at this moment. If I am wrong and he really is a Doctor he should be able to extract it and heal himself. There, a little test for him!
I reread the last paragraph and see the bitterness resulting from the pain. I consider whether to take it out. But I have determined to put in thoughts as they arise so in it stays. It is me.
I have a difficult night’s sleep with no real rest. I awake early and feel tired. Some challenges today.
Three weeks since the diagnosis. It feels an eternity. So much has passed – sometimes painfully!
The day starts well. I have everything on my laptop I need to start work. I am feeling more positive and stronger. I start with some video processing. After a couple of hours the display becomes random and finally dies. I get dispirited and tire quickly. No stamina
Following the computer problems I start to feel some discomfort. Not the peeing glass kind but one I was familiar with 10 days ago. Infection? Not again. This is getting tedious.
During the afternoon it gets worse. Urinating feels like trying to piss the Atlantic Ocean through a peashooter. What little comes out has the consistency of the product of a Herefordshire Scrumpy farm and burns like a most potent shot from Big Chief Sitting Bull’s bottle of firewater!
7:30. In a little discomfort I am at Rugby Green Party’s monthly meeting. Surprisingly it is my first time in public since my operation.
I am Chair and Coordinator and procedure needs to be followed to divest myself of these roles ahead of a difficult few months. Tonight I transfer the position of Chair and announce that at next month’s AGM I will stand down as Coordinator. The business of the meeting transacted I am looking forward to going home. Alas someone decides to give a meandering account of a meeting they had attended. At last I can call a halt at 9:30pm and Lesley drives me home. The dark thought that I am starting the withdrawal from life is moved along – OK Lao Tzu, I’ve got this one covered!
Lesley gives me a lift to the bookmakers and I collect my winnings. What a feeling of satisfaction! I have triumphed
Some good friends call and there are difficult conversations. Difficult in an emotional sense. Personal circumstances and life histories are related so that I can learn from them. I am truly honoured and privileged by this. I only hope that I can help them in the future. A small but tight knit group of family and close friends providing a kind of net – a safety net for the times I will stumble.
I email my boss and agree a plan of action for me working from home.
Later I start watching The Children of the Stones. How I watch is important. The series was a children’s series made 40 years ago. This means that the production values of the series can in no way be compared with current production values and to watch it from the perspective of an adult living in 2018 completely misses the point. So to the best of my ability I view it from the perspective of its era. this works well. But in some ways the series stands up better than today’s efforts. For a start the music is imaginative and creative and the writers do not condescend to the young audience, presenting challenging images and concepts.
The whole production reminds me of the 50s b-move Night of the Demon which similarly scared the shit out of me when I was 11 and also contained similarly imaginative music, which for much of the movies was the aural representation of demonic forces. Sounds good, but Night of the Demon was a gigantic missed opportunity which still interests me as a wizened old afult . Based on an M.R. James ghost story (love M.R. James!), under the directorship of Hitchcok collaborator Tournier NoD was heading to be a great psychological thriller/shocker with all the ambiguity that entails. BUT. The studio insisted on Hal B. Chester as producer who in an act of eternal stupidity insists on a physically manifested monster in the closing sequences. 50s special effects were not up to it and Chester goes down as the true monster of the movie. Arse – feel sorry for the wrecking of Tournier’s work. Hopefully Children of the Stones have not employed a Chester – at the moment it is highly enjoyable – coloured of course by nostalgia.
Enough of the amateur Mark Kermode, I go to bed feeling stronger than I have in quite a while.
A truly awful night with almost no sleep. The temperature is ridiculously high. I move around the house but fail to get comfortable. There is no discernible difference between being in bed and being up so at some point I arbitrarily decide to have a shave to impose a distinction.
Lesley hauls the lawn mower out of the shed for me as I am not supposed to be lifting heavy weights. Relying on other people. Wisely, the specialist nurse forewarned me that this will be one of the most difficult things to accept. It is clear that I have options as I go forward. But each option will inevitably mean that I need to allow others to take charge of areas of my life.
I mow grass. The heat is unbearable. I return indoors and slump in a chair. The medics warned me that fatigue is the biggest obstacle and, boy, are they right!
I watch the World Cup Final. France win and I make a profit. I have beaten the bookies. Yes!
A parcel arrives through the letterbox. Must be a mistake – I haven’t ordered anything. Puzzled I open it and it is a DVD of the old cult children’s series ‘Children of the Stones’. Light starts to dawn and I examine the slip. It is from my good friend, Phil. What a lovely gesture! Something to look forward to. I make a thank you call.
Slowly the peeing glass effect starts to fade, but urinating is still uncomfortable.
I awake. It is peaceful and I am not in pain. The words have more meaning now.
I get up to a lazy shave and breakfast. Whew!! That is enough for the morning. On Wednesday my new Lauttern Compagney CD (Timeless) of music arrived. Once again it was an intriguing mix of baroque and contemporary – Tarquinio Merula and Philip Glass. I put it on and reflect on the irony. Today will be a day of two types of glass – Peeing and Philip!! I am developing a glass obsession!
This CD is different. The baroque Merula is more freely interpreted, but of course the minimalist Glass is tightly structured so the order I desire at the moment is restored. Around midday I am looking for some tasks which will get me moving but not be arduous. I decide to do some routine checks on my car, oil, tyres etc despite the fact that I won’t be using it for a few days. Then I check out my bike. That’s enough for the moment.
Lesley comes home. She drives me to a betting shop and a cheese shop. Remember my bet on Uruguay when I first got the cancer diagnosis – the only logical thought of the day? This is the final result – a hedge bet on Croatia to win the world cup and I am guaranteed not to lose. I am not a natural gambler – the reason I do this is the challenge – is my system better than the betting shop? It is an intellectual challenge with the money staked a token of belief. But the thrill of winning is undeniable! I wonder what Lao Tzu would have made of it? I guess the sense of attachment to an external event would bother him.
Aside from that we buy cheese.
We go back home. It is mid afternoon and I feel wrecked. Urinating is still like peeing glass – the specialist nurse said expect it to last 48 hrs.
Another two day double posting – the hospital days.
Day 16 – Thursday 7.30am SODA (Surgery on Day of Admission) Unit, Coventry Hospital
I go through the admission process and change into a surgical gown. I nervously mention my possible infection to a Junior Doctor. He seems unperturbed and assures me the surgery will go ahead. A peculiar sense of relief. Various medics including the anesthetist visit me and by 8:15 I am ready to go.
A cheery theatre assistant calls to collect me and we walk down to the theatre area chatting calmly. The informality and friendliness is a relief. We sit in the waiting area while more medics double and even triple check my details. Again very informal and relaxed. I reflect for the umpteenth time on the professionalism and care of NHS staff. Finally it is my time and I am led into the theatre anteroom. I am prepared for surgery and the consultant appears. Even at this moment there is time for humour as the theatre assistant tells me she has tucked my glasses into my slippers for safety. As the anesthetic takes effect I have a bet with the consultant that I shall remember the fact.
6.31pm Ward 33 Coventry Hospital. I am in a room on my own. I hear the consultant approaching and he has encountered Lesley arriving for visiting time. He says he is glad that she is here. My heart sinks at the tone of voice.
Pleasantries are exchanged and the consultant comes straight to the point. Today’s surgery has gone well but has revealed that the cancer has gone into the bladder muscle. This means there is a strong possibility that to eradicate it completely I will need my bladder removed.
The consultant leaves and closes the door. The same sense of blankness descends and this time encompasses Lesley. An hour passes before we can make any meaningful communication. A nursing sister slides in to offer any support we need. The void is immense. The only good news is that early results from the CT scan indicates that the cancer may not have spread.
Friday Day 17 7:30am. I have spent the night partly sleeping and partly reading. Spending all day in the same position is getting tiresome. Now the catheter is coming out. Because it was large to allow surgery the pain for two minutes is intense. The nurse leaves me and I lie back waiting for the pain and throbbing to subside. The day is full of challenge. The next one being to pee on my own. Some blood and more pain.
I am visited by doctors and consultants all anxious to know that I understand what is happening to me. I am visited by a specialist urology nurse who gives me more practical information about what the future may hold than anyone so far. She is kind and reassuring and insists that I am not alone that they will be with me every step of the way. I mention the pain I am experiencing urinating. She says that is common and describes it as ‘peeing glass’. The perfect description!!
My surgical gown is spattered with blood and is reminiscent of a Halloween costume worn by a rock guitarist at Coventry’s Tin Angel venue a few years back. Now I am looking forward to going home. First some problems. They want to make sure my blood pressure which was slightly low has returned to its naturally slightly high value. Then I am retaining too much fluid in my bladder – as a result of drinking too much!! I am moved to a general 4 person ward room and go stir crazy waiting for my bladder fluid level to fall. Finally a scan at 7:30 pm proves satisfactory and I am discharged.
Lesley takes me home and I manage to call my brother before falling asleep on the sofa. I crawl to bed.
+++ Writing my blog I make notes during the day and type up my blog when I can. I did not do this for Day 15 so I simply publish my few notes retrospectively as they are. +++
My last day in work. I am worried as my infection symptoms have returned. But it is too late to do anything about that. I really hope tomorrow goes ahead.
I get calls and texts wishing me luck. Despite the advice of Lao Tzu I find myself constantly thinking of tomorrow.
Dark thoughts return and are difficult to push away.
I watch the football, again distracted by its pointless nature in my world.
Assuming it goes ahead I shall be unconscious during some crucial political events.