Five weeks since my cancer diagnosis.
Another working day. I spot a massive error on our test system during Quality Assurance and fix the issue. I update the live servers and all is well. I wonder if I’ll be doing this next month? I briefly wonder what, if anything, I will be doing next month. I am feeling irritable for some reason. It is an irony that the tempo at work is increasing and may reach a head at exactly the moment when I will be taken out of the game. The specialist nurse warned me that this will be a big mental issue. Letting go. Lao Tzu would heartily agree with the nurse. In many ways this is one of the biggest learning experiences of my life.
My new soldering iron arrives this morning. Impressive delivery! No excuse, now. I can get soldering. Oh dear!
I need to get on and make arrangements for Rugby Green Party’s AGM. The date, time and venue is all arranged. I have a proposed new constitution and a strategy for the coming year. I want to hand the party over to the new coordinator in good shape – whoever he or she may be.
No sudden phone calls or letters from the hospital. A relief.
Reading my copy of the Narrow Margin in the evening some extraordinary facts emerge. For example in 1938 the backbone of Britain’s air defence was the Gloster Gladiator, a hopelessly outclassed biplane with a radial engine! The new Hawker Hurricane must have been a bit of a shock not to mention the soon to be introduced Spitfire!!
A day at work. I need to move quickly. I have lost track of time and tomorrow is the last day of the month – online product update day. I get some updates completed and the finished article ready for uploading to our test webserver ahead of a quick Q/A and go-live tomorrow. During lunchtime I decide that I am going to bite the bullet and learn to solder. A new skill to master. The little railway demands it! But I am sure I have some equipment somewhere at home,
Home again. I go for a jog. A little longer this time (just!), about ¾ of a mile. I am out of breath. Good!
Washed and changed I spot Brandi the Cat sleeping among some clothes on my bed. She is so peaceful and relaxed, almost as if time has stopped. It is difficult to reconcile with the disease inside my body which will end my life unless terminated quickly. The external and internal realities present a stark contrast.
I hunt for the soldering equipment. I find a tiny 12v iron long past its best and, at the other extreme, a huge 70w behemoth with which I could solder Blackpool Tower!! I need some appropriate gear so I order a new soldering iron and solder from RS Components of Corby.
I listen to some Gesualdo motets. Music for meditation and contemplation rather than easy resolution. Bach, Feldman, Radiophonic Workshop, Handel, Pink Floyd, Soft Machine, Gesualdo, etc, etc…..musical life is never boring. That’s before I start on John Cooper Clarke, the Bard of Salford and Poet of Punk (souls of a sensitive disposition, beware)!
I awake still with a feeling of lethargy and fatigue. But the rain has started and the temperature is mercifully much cooler.
Around midday the rain eases and I put on my light boots and set out for a walk to Little Lawford, a round trip of about 45 to 50 minutes if you don’t dawdle. As I reach the path across the fields a light drizzle starts. The sky is overcast with variegated darker and lighter grey clouds accompanied by a cool breeze. My sort of day at last! But, really, what did you expect from a boy born in a narrow steep sided valley in south Wales? I am willing to bet that my parents first took me home from the little Tredegar General Hospital wearing their macs!! My parents. Cancer claimed my mother’s life and her mother before her. My father, heart disease. At least with cancer you get time to say goodbye.
A tree blocks the path. That ain’t stopping me. I meet a woman walking her lovely Border Collies. We stop and exchange pleasantries on dismantling and cleaning shower and sink waste plumbing. Who said us British are emotionally frozen!
I reach the ford at Little Lawford and dawdle at the edge of the River Avon viewing the opposite bank, accessed from the path I took last week.
In the evening I listen to the improvisations on Handel. I wallow in the gorgeous counter-tenor singing. I loves a good counter-tenor, I do. Now an alto voice with clarinet obligato accompaniment by Gianluigi Trovesi. Life is good. The rhythm mutates to a Latin American base. Yes!! I bet those critics of this CD wouldn’t be able to talk to a stranger about waste water pipes!
This morning I feel awful. I am seriously fatigued and my muscles are stiff and ache. I lie in bed until about 10:30. I have breakfast and decide to try and work it off by going for a bike ride. It helps and the muscles loosen a little.
A parcel arrives; a long tube. Some track I’ve ordered for my little railway. Next I travel over to B and Q in Coventry to pick up some cork for the surface. Its coming together.
Later, a letter arrives from the hospital. My next appointment is on 8th August, nearly two weeks away. I am conflicted. One part of me realises that the quicker the disease is eliminated the better. Yet after this trying week another part of me longs for a brief respite to catch my breath. A fortnight is a good compromise.
I start to feel better and decide to do a little work, developing some more learning objects for our next product. I am still struggling with the focus of my eyes. Could it still be the treatment or the dryness of the surface of the eye?
More music. This time a late night documentary on BBC4 about the development of psychedelic rock in Britain. It conflates Hippies, the Summer of Love, the Counterculture and the Underground movement a little too much for my liking. Although some of the elements overlapped they were sometimes at odds. But a fascinating era when all sorts of things coalesced. I particularly liked the Pink Floyd and Soft Machine clips. Love Soft Machine, especially when they evolved into an experimental jazz-rock outfit with the terrific Elton Dean on saxophone.
I awake. It is peaceful and I am not in pain.
I make friends with Brandi the Cat who bears no grudge against my apparent rejection of her last night.
I go to work and put in a steady effort. Nevertheless, anything out of the ordinary taxes me, which means my stamina is down. At least this morning I can enjoy a cup of tea, There is a light shower but not enough to relieve the heat which climbs to 30c again.
On the way home I stop off at the surgery and drop off a prescription. I get home and slump in the chair, completely drained. The week has been stressful.
I had indeed ordered another book on the Battle of Britain, the Narrow Margin on which the 1969 film was based. It arrives today. This history is fascinating. As usual with history the facts are rather different to the popular history of public consciousness. I appears almost that the Germans fought the battle from a totally inappropriate strategic position!
Later on BBC4 there is a treat in the form of the Pioneers of Sound electronic/orchestral prom. Two of my favourite musicians, Delia Derbyshire and Daphne Oram are featured alongside more contemporary artists. For the first time since my diagnosis I am happy to go with some overt experimentalism. I love it. But I wish I had been in the audience for Still Point, As a site specific piece, whose site happens to be the Albert Hall itself, you would really need to be right in the middle of it rather than listening through a flat set of TV speakers.
I drag myself to bed.
8:40am The last time I can eat or drink anything apart from water until after the scan.
I go to work and get through the morning without my usual tea. It is a good morning and I get much done. Maybe it’s the lack of tea!
3pm at Coventry Hospital’s Department of Nuclear Medicine. Wow, impressive. I am there for my PET scan. My details are taken and I am fitted with a canula. I am wondering whether to have a canula permanently embedded in my body!! A direct line into my bloodstream. That would make even the most impressive of tattoo’s seem wimpish!
A radiographer injects me with a radioactive substance and I have to lie down quietly for an hour while it circulates. The drink I need to sip while resting is disgusting, best described as rotting aniseed. Urghh. I am taken to the scanning room and the process is begun. The machine is like the one at Rugby, though this one is worth £750,000! This time the procedure takes 25 minutes and lying with my arms above my head is tiring for that length of time.
The canula is removed, I am discharged and we travel home. I decide that I desperately need some exercise so I go out for a short jog. Again the heat is oppressive and I am quickly back home to do some stretches. Some rain and cooler weather is promised for tomorrow. Bring it on.
I am radioactive for the rest of the evening! As she is small I spend the evening avoiding contact with the aat. She is confused and a little put out as to why I am rejecting her. Not pleasant.
11am and my old mobile phone (as opposed to my new one) rings. A private number. I’ve learned not to ignore these calls. It is from my consultant’s secretary. Can I make a 1pm appointment? I reply I’d need some time to make arrangements. Lesley is available and I can rearrange other things. I accept the appointment.
12.45pm I arrive at Outpatients 4 I am not recorded on the system which causes some problems. We wait for 45 minutes in a =n environment which is noisy, with loud air conditioning, phones ringing, the bustle of activity. It is stressful
The meeting with my consultant confirms that I will need my bladder removed. He starts the process of going through the details of the procedure. By necessity I am told all the unpleasant and dangerous aspects of the operation. It is grim listening.
Up until now there was the possibility (admittedly remote) that this would all not have to happen, that the doctors would be wrong and the biopsy’s would prove otherwise. It is anticipated that the operation will take place before the end of August, just a month away. In a month my life changes forever
Travelling home is yet again a reflective and introverted time. I include mental events in the class of events and so, in the words of Lao Tzu at the top of my blog, I let them take their course. I cannot face driving back to work so I take a break for a while and then open my laptop to log in and work from home.
I decide that travelling 200 miles on Thursday evening is out and visiting my mother-in-law is off.
I do some more work on my little railway. That’s better!
Four weeks since my diagnosis. Unimaginable. So much has happened.
Another CT scan. I go to work until about 1:30pm when I set off for home.
Arriving home another hospital letter awaits me. Yet another scan, this time a PET scan in Coventry. The relentless nature of the tests and scans depresses my mood. But this one I have to confirm early. Apparently I need an injection of a radioactive drug for the scan to work. Another scary event in a whole series of scary events. I cannot be sure of how I will react physically to any of these scans so the mother-in-law visit is immediately in jeopardy. But I won’t know until after the scan
First things first and I need to get today’s scan over. This time the process is a little more relaxed and informal. But the routine of warmth inducing drug, moving bed and deep breathing is repeated.
Lesley takes me home. My mood is still depressed and reflective. I go out for a bike ride around the village. The sensation starts to lighten the mood. When I get back I decide to start sawing up the wood and begin construction of my model. My intuition proves correct. I am absorbed in sawing, drilling and screwing together the wood. I am feeling happier – creativity to the rescue. The next scan is not until Thursday and that is in the future and cannot be changed – facilitating Lao Tzu from a creative act!
Another warm night and it is forecast to get even warmer.
Back at my desk in work this morning. I wasn’t looking forward to this, but people leave me alone in the main. Those that do want to talk about work matters which suits me just fine. I work slowly but consistently and I find I am not tiring. I am glad I did at least a modicum of exercise and activity while I was off. Ashley is already in when I arrive and we start to exchange jokes and information in a kind of shorthand manner that only colleagues who have shared an office for a while can do. I feel a kind of comfort in being back into the formal activity of a workplace.
Feeling well I continue working until 6 o’clock. Some colleagues tell me to work as I feel able, but it seems they want that to be shorter rather than longer! The idea that I feel OK to carry on well into the afternoon messes with their preconception of what I am experiencing. On other days they may well be correct! The only problem I encounter is with my eyes, but I put that down to the heat drying them out quickly and altering the focus. I have eye drops so use them.
Phil calls around one o’clock and we chat about things such as meeting up sometime soon. Not next weekend, though, as we have promised to visit my mother-in-law.
On my way home I stop off at a local DIY store and buy a small amount of Plywood and some battens. I haven’t a clue what I’m doing, but hey, the internet is awash with people telling you how to build a model railway! Apparently Pete Waterman has a huge model railway. Proceeds I guess from a life pumping out superficial industrial pop music.
I get home, put away the wood and get some garden refuse into the bin for the morning. Now I really do start to feel tired and jaded.
I awake early. The heat is intensifying once again and it is not pleasant. I decide to go out for a jog before it gets too stifling. Getting the heart rate going for a short while is invigorating.
My car needs to be taken out for a drive as it has not been started for 10 days. Needing some things from a DIY store I travel around ones in Rugby and Coventry to get exactly what I want.
I have a need to work on something, to have a project which I creative – the need to be creative again. I have come across a video where someone is building a model of a coal mine. A model railway – that takes me back decades.
It seems very attractive to me – some practical skills, some planning required and a lot of creativity in making things. I start to think things over but I am learning to trust instincts. Plus it has the great advantage that there is no one to place deadlines or judge what I do. I am starting to feel like the guy in Close Encounters who feels a great compulsion to build a model of a mountain out of anything, including mashed potato!! But what the hell.
I do some gardening and dig out some pervasive weeds including the ever present brambles.
Lesley wants to see if we can schedule a visit to my mother-in-law next weekend. I’ll give it a go.
I am still reading this damned book about the narcissicists from the 1960s. Can’t figure out why I keep on with it. Coincidentally the John le Carre novel is also set in the 60s presenting a different image of demonstrations and social unrest.