9:00am Friends Blood Taking Unit, St Cross Hospital, Rugby.
The traffic getting here was lighter than expected so I arrive early. This means that I would have been better off not booking an appointment as I have to wait until 9:10! It occurs to me that my attitude since I was last here has changed. In many ways I am less worried. An irony. I know that the second operation is scheduled for next week and there is no going back. In brutal terms it’s the operation or die soon.
I am called next. Having handed in a sample of urine already, the phlebotomy assistant extracts 5 rather than 4 phials of blood. A record. surely. Three go to the hospital ahead of the operation and two go to the Genomic Research Group. For some reason I have to despatch the Genomics samples myself. Strange, but I was provided with the return packaging when I met Rebecca last week.
I am feeling very well so I stay on at work to finish some tasks, partly to make up for my late arrival and partly because I am enjoying the job!
Unless my maths is letting me down 49 divided by 7 is…..7. Seven weeks then since my diagnosis. It seems like so much longer than that. During that time I have learned much about myself and about life in general. So….another odd thing that a threat to your life should be the catalyst to learn so much about it!
Back in work and there is a strange atmosphere. There were some sudden departures yesterday and our small company is even smaller. Enough said.
My hospital admission letter arrives. I am to go in at 4:00pm on Wednesday 22nd August to prepare for the operation on Thursday which will take between 4 and 6 hours.
I am struggling to get a blood taking appointment at Rugby St Cross but finally select 9:10am tomorrow as there are no evening slots available. I’ll work later to make up the time. I have to have no fewer than FOUR phials of blood and one of urine sent off to Coventry. This getting insane. Two of those, however, are for the Genomics Research guys.
Lesley is out at a meeting so I cook some dinner and have a bath. Afterwards my mood is introverted and reflective. I am feeling a little fatigued this evening. The mood swings for no apparent reason have been catching me out and making me grumpy and irritable with others. I am starting to get used to them now and adjust accordingly.
Out for a morning bike ride. Just a quick spin around the village. The temperature is now much cooler and pleasant.
Doing some tidying up. I find tidying up tiresome and tiring. Probably not the only one to be honest!
On the way to Princethorpe we stop and I buy a new Rosemary plant. I used to have two, but the long desperate winter finished off one and the mercilessly hot summer saw off the other. I need a Rosemary plant, it being one of the symbols of the radical 17th Century Leveller movement. Lesley manages to get a bottle of dogbeer as a treat for Pippin the Spaniel
The last afternoon and evening spent with Andrew and Sharon. The mood varies between jovial and sombre. Andrew asks if I am still interested in going to Silverstone next Sunday to the 6 hour Sports Car race. I consider it and say yes. It is ages since I’ve been to an international motor race and I have loved Sports Car racing for literally decades unlike Formula 1 which I find tedious and uninteresting. This race is part of the World Endurance Championship and will feature many of the cars which took part in the Le Mans 24 hour race. I want to go for old times sake. Over the past century long distance Prototype Sports Car racing has pioneered many of the advances we now take for granted making our cars safer and easier to drive (including the rear view mirror!). It is my belief that as the rules evolve it can be an essential part in making non fossil-fuel cars better and more practical. I think it can be a component of a Green future. There is nothing quite like a bit of competition for powering technical advances.
Andrew had also ordered a pair of tickets for the Wales vs South Africa Rugby international in Cardiff in late November. I pay him for my ticket. It is an act of faith!
A morning walk. I decide to go to Lawford ford to see the height of the water.
I recall the walk along this route I made a few weeks ago in much hotter weather. I start to wonder where I’ll be in a few weeks’ time. I turn my attention to my walk and focus on the wind in the upper layers of the trees. What a beautiful sound. What a horrible place this would be without trees. About the time of my original diagnosis I was out
walking and realised that being outside was so important. The feeling of not being enclosed and isolated. Whatever the coming weeks bring I will try to spend at least part of the day in the fresh air.
The River Avon (yep – the one which eventually goes through Stratford) is surprisingly high. The water level be at least half a metre higher than when I was here some weeks ago. I guess
much of the recent heavy rain has just washed off the surface straight into the river rather than soaking into the ground.
We travel out to meet Andrew and Sharon at the Princethorpe campsite. Friends Phil and Alison had arrived a few minutes before us. What a lovely few hours surrounded by family and friends. The conversation is easy and lively, often focussing around Pippin the Springer Spaniel. Sadly, Phil and Alison have to leave after an all too short couple of hours. The time has just flown by. I again reflect on why it is that it takes events such as the one I am experiencing to bring people together.
We have Pizza for tea and the evening is drier and starts to warm up a little. No But Giomes tonight! It is a very happy time of my life.
The day starts fine and dry so I pop into Rugby before going for a jog and mowing the lawns. Unfortunately the weather does not last and spots of rain are starting to fall by 4 o’clock.
A letter arrives from the hospital. My pre-operation assessment is on Friday morning at Rugby St Cross Hospital at 10am. Another step closer! Before then I need a load of urine and blood tests. So much blood in fact that, as Tony Hancock might have said. ‘its very near an armful’! Tony Hancock. How retro!
I prepare the wood that will provide the legs for my little railway. Even though more work is required to secure them it is already apparent that the setup will be unstable. Time for a rethink and I devise a new plan using hinges. Not quite as neat but maybe more practical.
Andrew and Sharon announce their arrival at the Princethorpe campsite by Messenger at about 3:30pm. We head out at 6pm via Cawston Fish and Chip Bar to pick up dinner. It rains heavily and we are trapped inside the awning for the evening. But we are in good spirits despite a leaky tent roof. Spoonerisms briefly take over with my brother saying ‘But Ginome’ instead of ‘Gut Binome’. In our state of mind the idea of a But Ginome is hilarious. We will not let him live this down.
I reflect on the benefits my blog has brought me, quite apart from the therapeutic value. The medical staff caring for me are able to assess my mental well-being. Also my friends, family and colleagues know where I am and so can avoid the awkward start when meeting up. They can pick up an issue they have read or ask me about a part of my experience. That way the conversation gets off to a positive start. I must start to think about gathering these experiences together in an article.
Today I feel better though my eyes feel a little irritable. The bad taste in my mouth is still there but not as strong. During lunchtime I pop up to the supermarket close to where I work to pick up a few things for tomorrow. I am looking forward to spending a chunk of the weekend with Andrew and Sharon. Annoyingly it starts to rain heavily again and I am completely unprepared with no coat or umbrella. His shows just how unusual this summer has been! I take the car to the supermarket rather than enjoying the usual walk.
Late in the afternoon my boss Steve appears in the Office for a quick catch up. He invites us to the pub across the road for a chat. Mindful of the things I need to do tonight, including fixing a broken bath tap I at first decline. Then I think what am I saying? Have I learned nothing? Humans before broken taps!!
I join Steve, Ash and Caroline for a lovely hour. I hear Steve’s plans for the future and a restructured company. I completely agree with his analysis. Technology changes rapidly and our engagement with is is constantly throwing up new and surprising opportunities. I just hope I can be part of these plans. The danger of departing from the one day at a time ethos. So many temptations!
At home I finally get to look at the bath tap. I have the wrong type of spare to repair it so it will have to wait until the weekend in any case!
Some practical issues start occurring to me such as how I pay my credit card bill and my car MOT will expire while I am laid up. In amongst all the medical stuff are the practical considerations. Just how do you prepare for a possible 3 months incapacity? I send an email to my boss Steve to update him with yesterday’s news.
I feel a little odd today, a funny taste in my mouth and a little fatigued. I have felt this way before. But the temperature is way cooler than the last few weeks and I am grateful for it.
I finally get the email off to inform people of the Rugby Green Party Annual General Meeting. With a proposed new constitution and a Strategy Document I am glad it is out of the way. With the knowledge that I will be able to play little or no part in Party activities over the coming months it is difficult to keep doing the coordinator job. Starting new activities this close to the operation is impossible in any case.
Now here is a unique event for this summer. I’m out for an evening bike ride when it starts to rain before I even reach the end of the road. Large drops, too.
It is a strange time. Since the operation to remove the surface tumor I have felt increasingly better. It now seems odd that as I feel well that I need the major operation to remove my bladder. Almost as if there is some mistake.
9:30am. Ward 33, Urology; Coventry Hospital. The first of three medical appointments today. This one is with Lorraine a member of the specialist nursing team. She takes me through the practicalities of what to expect living with a stoma. Like her colleagues she is professional, reassuring and helpful. I feel happier. The support I can expect is very welcome.
2:45pm Clinical Area 4. A meeting with Rebecca of the Genomics Research Group. She outlines the work of the group and the sort of research it does and information it can provide. Apparently they need to process 3 billion pieces of information just for me! That should keep a computer busy for a little while. One possibility is to forewarn me of potential medical problems before they arise. After the conversation I realise that I have seen a tiny glimpse of the future – someday everyone will have a genetic analysis with the possibility of preventative care. Wow!
3:00pm Appointment with Mr Sriram, Consultant along with Lorraine. No nasties from the scans, apart from one which will be dealt with by the surgery anyway. I mention my blog and a note is made. If you are reading this guys (and anyone else from the Urology Team), then I’m really pleased to have you along and I appreciate what you are doing to help me. A profound Thank You! A date is set for the surgery – 23rd August. In two short weeks. I’m struggling a little Mr Tzu. Help me focus on today!
In the evening Lesley goes out to a meeting. I play a CD – Nuit Blanche by the Tarkovsky Quartet consisting of piano, cello, accordion and soprano saxophone. The music is more fluid, much closer to the forms I would normally play.
Six weeks since my cancer diagnosis. Back at work. I find that my book on the Tredegar Iron and Coal Company has arrived, A day early again. Good for efficiency, but it makes reception planning difficult.
It occurs to me that much of my time is involved with things from my past, often from my hometown. Even Elis James Feast of Football falls into that category with its familiar accents. Add in watching some of the videos from my old art teacher PJ, historical books from Tredegar and so on. I think I understand, an unconscious need at this moment to get back to times and places where I felt safe and secure.
I arrive home and get a nasty surprise. Walking around to the passenger side of my car I find somebody has put a small dent in the panel below the rear side window.
A bad mood, now. Some post has arrived. One letter calls me for a 9:30am appointment with the urology specialist nurses at Coventry. With a 2:30 Consultants appointment and a meeting with Rebecca of the Genomics Research Group, so much for travelling in to work. Another of those weeks when appointments suddenly and unexpectedly stack up. Good job I can work from home, so no problem.
Yesterday my brother messaged to confirm that he and Sharon will be spending the weekend at Princethorpe campsite. Yippee. Hopefully some friends can join us for a happy weekend. This may well be the last before the surgery if it goes to schedule.
9.20am. Puzzle solved! My old mobile rings and it is the same number as Thursday’s missed call. This time I take the call. Intriguingly it is from the Genomic Research Group unit at Coventry Hospital. A non-clinical department, which is presumably why they don’t share numbers with the rest of the hospital. Biomedical Assistant Rebecca is calling to see whether I am willing to take part in a study (called the 100,000 project) into malignant DNA.
I vaguely recall receiving something about it a few weeks ago among the ton of other literature I was given. I am more than willing to give consent for them to use tissue samples. Another positive thing, albeit in a tiny way which will hopefully help future generations. I agree to meet Rebecca on Wednesday afternoon when I am visiting the consultant.
Being a humanist I have no God to answer prayers, in fact no praying at all!. Instead I have an unshakable belief in the ingenuity of man to make life better. In this I trust – and being a Green I include climate change in the scope of solvable problems. So no scam after all. Just as well since the technology required to pull off such a stunt would be very advanced indeed!
We pack up the car and set off for home. My mother in law persists in trying to get us to say when she can expect a visit. She finds it difficult to reconcile this with her earlier advice of ‘take each day as it comes’. Lao Tzu would recognise the discomfort! I stick with Lao’s advice and refuse to make any predictions, difficult though that is for her to accept.