Thursday and I have a 9 o’clock meeting so its a quick muesli breakfast adn coffee before settling down with colleagues. Its a good meeting, a mixture of operational stuff and social engagement. Post meeting I catch up with some admin and then I read for a little while. Come lunch time my partner and I drive to our local farm butcher and buy the meat for dinner on Saturday when we are cooking for friends. Soup for dinner and then I take a trip to the garden centre to replenish Squishy and Squashes food. When I get back I find that something sneaky and probably rodent has got into one of my sheds where I am storing the squirrel and bird food. I have to re-package the food before I refill Squishy and Squashy’s feeding station. I return to the Shed for a while to write a few words and then visit the post office to buy more stamps. Back in the Shed I read more of Dead Man Running until the garden guy arrives, I equip him with tea, money and instructions and then cook a meal. The family eat and then I give my eldest daughter a lift to circus skills. I read more of my book as I wait in the car till the end of the session. Home and I watch football and then read some more and message friends. Finally I write the blog.
I realise that this is short and sweet but I intend to finish the book tonight, I do not want it hanging around any longer. It is full of stuff that is familiar and difficult. Reading the experience of a younger man with metastatic prostate cancer going through the same process as me and experiencing the same physical effects is difficult. His journey is radically different to mine as he throws himself into ultra running and travels the world to different challenges. He also very quickly integrated himself into the world of charity fund raising and the Cancer charities. Perhaps the combination of extreme physical effort and interpersonal engagement with fellow prostate cancer sufferers accounts for his survival. What is particularly difficult is the fact that he has survived for longer than I have so far by many years and he has therefore experienced the side effects of chemical castration for longer, it does not paint a pretty picture of what I can expect the longer I survive, even if I stay fit. It is the psychological battle to remain the person I recognise as myself that is the most demanding and challenging.
Tuesday and its throwing it down, welcome to winter. Time for muesli and coffee and then I potter, including putting a meal into the Croc Pot to be ready for the evening. I do some evidence reviewing before I attend a Teams meeting at midday. It is a useful meeting and I come away with some issues to check on tomorrows meeting. Lunch is a bacon bagel and then my partner and I drive over to see her mother and deliver some bottled water. We chat for a while and sort out one or two things before leaving her with her carer. We drive back to Leicester and go to the gym. I train for an hour on a cross trainer managing to shed 714 calories. A quick shower post session and we drive home to the Croc Pot creation to sustain us. The evening is taken up with a combination of football and Shetland before I write the blog. Its been one of those beige days, flat, safe, unremarkable, a jog through mediocrity of living. Yet ticking away in the background is a clock that makes everything important and all the people I am connected to special. The invisible makes its presence felt by what it effects, like dark energy and matter in space.
Monday, I wrote letters all morning in the Shed. Lunch came and went before I posted my letters in the persistent rain that lasted all day. My afternoon was spent down loading evidence and catching up with NICE guidelines for Personality Disorder. However I did have one revelation which took me aback, my friend who is fighting off COVID revealed that she drank hot Vimto as part of her recovery diet! Hot Vimto! I was taken aback, how does anyone get to hot Vimto. I am now curious about the possibilities of hot Irn-Bru. No getting round the need to train so I headed for the rower in the garage and did one of the gentlest half hours of my life as my left arm was felling over stretched. A welcome shower followed and then I put my glad rags on as I was being taken out. We drove to the pub and indulged in pie night, sneaking in a pudding and coffee as well. Home in time to see Have I Got News for You and retreat to bed before getting trapped by the TV.
Tuesday: up but no breakfast just coffee and drugs before I go the gym for a swim and a steam. I take my partners car and check the tyres and fill it on the way. Once at the gym I eat two bacon brioche rolls and a large coffee before slipping into the pool for a few lengths followed by 10 minutes in the steam room. I just finished showering and toweling myself down when the alarms went off, not a drill, and staff appeared to hustle people out. I resolutely took my time to put trousers and a hoodie before making my way to the emergency exit. It was like a scene from a disaster movie. Half naked people, old ones, in towel and staff wrapping children and swimmers in foil survival blanket. Looked like a foil cooking lesson for cannibals. Mercifully we were let back in quickly to retrieve our clothes and bags. I indulged in a coffee and a cookie before driving home to put the bins out.
At lunch time I make a work call to a clinician I met at an on line meeting and chat about some issue with a therapeutic community. Life is difficult balancing the actual clinical needs of people in the community and the embarrassment of vey long waiting lists for help. It is little wonder that some nhs trusts appear to lose their way at times. I spend the rest of the afternoon in the Shed writing letters and watching the rain get worse. I make a dash to the post box and then clear the kitchen and empty bins before tea time and he first European football match of the evening. I start the blog, watch more football and the end of a film before finishing the blog for the day once the rest of the household have gone to bed.
I like the quiet space at the end of the day, it gives me time to let my head be where it wants to be and to reset itself for the next day. I wrote today that my cancer is like a ghost or Harvey the six foot rabbit in the James Stewart film of the same name. They are both invisible. From the outside it seems like madness that I have a terminal illness when I train and work and appear to do all the normal things, internally I have a constant dialogue that wonders if I will make my next event, milestone or goal. In the lone space of the night before sleep I remember that I am lucky, I am loved and cared about. What more could a chap want, invisible rabbit or not?
Sunday, a warm drink to start the day and then breakfast. My morning is spent printing out a work book and evidence related to a TC accreditation visit I am doing in November. Its interesting the way various services have adapted to COVID and tried to maintain their central values and procedures. We try to ring our eldest daughter for our usual Sunday chat but find she is “in the forest” and the signal there is poor so she says that she will ring us back. We work our way towards going to the gym in the afternoon. I spend an hour on a reclining bike and then do a few weights for my arms. I burn 577 calories off before indulging in a long and hot shower. Then its home and the usual evening. Tea followed by Strictly results show and then I settle down to read more of Deadman Walking. I continue to be impressed by Kevin Webbers running achievements and his determination to keep having challenges and goals to work towards. The book is full of the details of the pains and achievements of he races but what stands out to me is the constant worry about PSA level. That really chimes with me. I also note that his oncologist has his bloods done on a monthly basis, the very thing I asked for that the medics have refused to do. Medical insurance or sloppy practice, dependant on the medication, or medical expectation is my question. I get tired of the reading and write the blog.
Saturday morning and its the usual coffee in bed and a chat to plan the weekend. While my partner prepare breakfast I do my fortnightly drugs wallet refills. It means I have all my drugs sorted for the next two weeks and I can take stock of when I next need to order more. We eat breakfast and then I check the foul drain outside to find to my surprise that it is clear so I set about clearing the down stairs toilet. A job well done. Having tidied up a bit we go to the the garden centre where our butcher is. So we load up with bacon and notice that the butcher is taking orders for Christmas turkeys. So we take the opportunity to order a turkey and add to our Christmas club savings to off set the cost in December. So we come away with the makings of pigs in blankets to store in the freezer and our Christmas turkey sorted. That was an unexpected bonus. I get messages from the Shri Lanka family who we have tried to help. The family who sent the video that I posted here a few days ago. They have bought the building materials they need and in the next two or three days they are going to replace the roof that has been leaking. I’m looking forward to the pictures that they will send and to posting them here.
Back home and I watch a rugby match while my partner sorts through her wardrobe to make space. I hear from a friend who is recovering from COVID and it seems that progress is being made, which is good news. The afternoon passes until I cannot put off training any longer. I go and row for half an hour and wear off a few calories. I also do a few weights curls as I’ve decided that I need to build my biceps back up. Rowing and the other stuff I do does not build my biceps and as a result they have reduced so I need to build them again.
A reasonable session.
We eat tea and then of course we settle as a family to watch Strictly. I start the blog and will gradually finish it as the evening progresses to the the football highlights via Jools Holland, or not.
Friday and its a potentially demanding one. My unconscious was obviously aware as it woke me up at 9:40. I got up and showered, which I always do when I’m going to the GP surgery. My life experience is that you can go to a doctors expecting the routine sight of the prescription being written as you enter the room and end up with a finger up your arse. Hence the shower and of course clean underwear. With a few minutes to go I wander down to the surgery to find a queue of my peers waiting to be admitted. We are all there for our booster jabs. I survey my peer group and I think to my self “Jesus do I look like this lot?” I probably do but I’m the only one in a handmade T shirt and a long ponytail. I am also almost the only person in the queue without a stick, walking frame or mobiliser. Dead on the dot of 10:45 we get let in, signing a consent form on the way. We get a leaflet thrust at us about what is going to be stuck in our arm and seated in lines in the waiting room. A nurse and a helper appear with a trolley and for a mad moment I thought I might be getting an ice cream, but no I am just asked questions and then a jab in the right arm. Like naughty school children we have to wait for 15 minutes before we are allowed to leave. In a moment of release clutching my new “I ‘ve had a booster jab card” I head for the village cafe. I’ve not been in since before the first lockdown. The first thing I see is the hand written note that states proudly, “we are cash only” and I feel welcomed. I order coffee and a bacon and sausage baguette and settle into a corner table and take stock of the view.
I sit and enjoy the view of the village mini roundabout as I munch my baguette and ponder on the changes in my life since the last time I sat in this cafe. I check my messages. My friend with COVID is suffering and trying to rest but also keep going. My sister sends a message to say she is having phone difficulties but someone had sent the fire brigade to see if she was alright. I had to reply and own up that it was me. I leave and walk via the co-op and load up on coffee which they are selling at half price.
I get home in time to go for a lunch time walk with my partner round the village. We chat mostly about what reading Dead Man Running has raised for me and our mutual recognition of some of the experiences. I think I have come to the point where I realise that nothing I do will effect my PSA score. I can be as fit as I can be, be as strong as I can be because these things help sustain me and get me through treatment, but it does not affect my cell biochemistry. It is the medication that does this. If my PSA is rising then it will need new medication/chemo to lower it again. It is the place I feel most vulnerable, because I am dependant on the medical profession, and I confess my confidence in them is low. It offends my sense of self to be dependant on anyone but it is worse when it is doctors, they appear to revel in their self perceived greater understanding and right to make decisions in their multidisciplinary teams that exclude me. There is an arrogance that offends me.
Back home we have lunch and I potter a bit before some really serious teeth brushing and mouthwash gargling, my usual ritual before seeing the dentist. Its a brief walk to the dentist where I take my place in the waiting room. I am soon called in and have a chat with the dentist and decide that my chipped tooth can be patched up and we will have a big review after my next oncology appointment. So my dentist patches my chipped tooth up, applies the UV light to set the compound and sends me off to pay my bill at reception.
Once home I immediately change into training gear and pack my bag. We drive to the gym so that my partner can have her hair done and I head upstairs to the gym. I row for 15 minutes and then X train for 65 minutes, burning a total of 868 calories. One thing about training in a proper gym is that it is full of mirrors so as I row and cross train I am drawn to wondering if my tits are getting bigger due to the medication. I decide that I ought to do some more upper body weight work, fat into muscle being the theory. A quick shower and then I sit with my partner in the lounge downing a black coffee and a white choc chip cookie. We get our eldest to order Indian take away and then drive home to enjoy it while watching a rugby match on TV. I start the blog and in the background programmes come and go till the blog is done. Then its clear the kitchen, dispose of the Indian meal packaging and get myself to bed. I thought of a good present today but when I investigated it I found I could not get it in a form that could be a present only in an electronic form that defeated the whole object of present giving. Clearly our technological world has its down sides. Its cold impersonal logic and “convenience” is not compatible with surprise or gifting in a material form. So back to the drawing board.
Its Thursday and an early work meeting calls so it a quick breakfast and coffee before I’m sitting in front of my screen. Its a catch up meeting, very practical and explores how the world is changing and what will happen to our role. We range over several areas and try to get a perspective on the work we are doing and the services we work with. It goes on for quite a while and includes catching up with each other and our weekend plans. It gets towards lunch time before we end. I get to my messages and find a friend has gone down with COVID and is feeling grotty. Difficult to support at a distance but I try. Lunchtime comes round and my partner and I go for a lunchtime walk round the village and to collect some scones and a paper.
A simple lunch. I try to ring my sister again and once again the phone rings till it cuts off. I am becoming concerned as its been doing that for a couple of days and to make it worse the BT email system has crashed. I spend some time tending to my fish and renewing their view on the world. Its a bit of a tiresome task but a necessary one. I try to ring my sister again but the phone rings and then rings off. I am concerned as I realise that I have no one to ring in order to be able to check if my sister is okay. I realise that I know the family solicitor and the local church, neither of which are practical options, but no practical options. In the end I ring Hounslow Services with a view to raising a safeguarding issues.They advise me that my best course of action is to ask the police to do a welfare visit by ringing 101. I do this and get put through to an operator who takes my details and asks about my sister. In a short time they have arranged for someone to check, apparently all the services will undertake these visits. The call ends and I get a text with all the reference numbers I need. In a very short time I get a call from the police administrator telling me that my sister is safe and well verified by the visiting officers. It is a great relief. Clearly we need to get the communication channels sorted for the future. Apparently my sisters internet had gone done.
My partner and I eat tea and then I go to collect my eldest daughter from a circus skills session. I get back home and settle down to read Dead Man Running. It is a tricky read for me. I identify with the medical processes and that moment of diagnosis, although I have to say my response was different. Kevin Webber was 49 when he was given his diagnosis, I was older and I think that makes a difference. He immediately got into the cancer support systems and charities whereas I went in the other direction. Having said that his running two marathons during chemo is a magnificent achievement. The book is sold on the basis that he was told he had two years to live, that’s not quite true. In the book he explains that he was told he had two to ten years but to think three to four not ten. So the fuzzy stats where there for him to. There is a limit to how much I can read this at any one time so I set about writing the blog. Tomorrow I’m having my COVID booster jab and filling so that’s me sorted providing I can get some gym time in.
Wednesday and its an Elders meeting day, always a good day. It is also a day when both of the other people in the household have GONE to work. Yes actually got up and left the house to go to work. Its bliss, I clear the kitchen, make a bacon bagel and wander down to the village shop to buy coconut milk and a paper. I have a five minute burst of culinary activity and load all the ingredients in to the crock-pot, set the timer for 8 hours and bingo there will be chicken curry for tea tonight, just a pan of rice to do later. I am rapidly falling in love with the crock pot, it enables me to in effect cook while I have energy rather than when I am feeling jaded at the end of the day. It also shares out the cooking duties more equitably so that I get to do more cooking. That’s got to be a good thing.
My new best cooking friend
I catch a story on television about a bloke with prostrate cancer who was told in 2014 that he had 2 years to live. 7 years on he is still going strong, in fact he has run over 15, 000 miles raising money for charity during this time. He does not believe in bucket lists just doing what you want to do and for him that’s running and raising money. Hs name is Kevin Webber and his book is called Dead Man Running, out now. It was his positive attitude towards living his life that was interesting.
I’ve said before that I am not the person who feels the need for the extremes. I know I am alive every moment of my days and nights but I also know that I value the people I love and want to be around them in the ordinary day to day life of them. I have always held close the idea that the generative power of everyday living is enormous, one just has to pay attention to it. I’m not sure I would feel any more alive, and likely to live longer, running a jungle ultra marathon than I do when I am paying attention to what I am doing when I am cycling in my Shed. I am sure the physical exercise is the key element not the extremeness of the effort or the environment. I maybe wrong. It maybe that that the adaptions that the body has to make to survive the extreme stress it is put under somehow fights or impedes the growth of cancer. I confess my ignorance and probably need to do more research. If it is true I am still not sure I would run a marathon across ice and snow. However hats off to Kevin Webber, he’s doing something I doubt I could do. I wonder if he can rollerblade.
It is a book I shall read as I am interested in his approach and his story. He himself said that he lives each day in a way that means he does not create new regrets about not doing things. He runs everyday and goes off to run ultra marathons in extreme climates, including jungles where he was accosted by a cobra. I have of course been to Amazon and arranged for a copy to drop through my letter box tomorrow. I am interested how hos clinicians were able to give him two years to live. That seems a bit precise. My lot, “he who made a pact with the devil”,could only say that the chemo would give me an extra 18 months but he could not tell me what the 18 months was being added to. I had to look at the survival curves and work out where my Gleeson score put me. In a report to the GP the oncology team seem to have taken my word for reporting my calculation but not saying what theirs was. So you can see my interest in the fact that it appears some one can make that prediction, even though they now appear to be at least 5 years out to date. When it comes down to it I do not think anyone knows, people just take a punt on a best guess based on some fuzzy statistics. Fuzzy in that the average is what gets reported but not the standard deviations and range. As my sister pointed out life is terminal, cancer just quickens the process maybe.
I attend the Elders group for an hour and a half and as always its a delight to be in conversation with ones peers. The choices that face us as we journey on are interesting. Where do we put our energy to best effect and how do we stay true to the things that bind us together. As we get older the issue of energy management is no small matter. I am certainly aware that I do not have the energy I once had and I want to use what I have in the best way. It is something several Elders share. As I say these meetings are stimulating and are the dialogues that keep me thinking, adapting and trying to make sense of the universe and my relationship to it. Everyone should have spaces like this but unfortunately in this world the room for such spaces is rare and I wonder if there is room in my village to create such a space. I have lunch, try to ring my sister and find I have a defunct mobile number for her and the land line is not answered. There is no answer phone message either. I am slightly perturbed but will ring again later. I draft the blog as my partner returns from going to work and then I head for the Shed to use the exercise bike for an hour. It feels quite chilly as I step outside so when I get in the Shed I put the heater on and clamber onto the bike. It’s clear after a few minutes that the heater was a mistake but I’m too obstinate to get off the bike and turn it off, after all if Kevin Webber can manage a jungle run an hour in a Shed with a heater on should be doable. It turns out it was doable, hot but doable. A reasonable hour of sweat.
Time
Calories
Kilometres
A reasonable session.
As I pedal away the guy who comes to tidy our garden turns up and start to clear the debris away. Once I’ve finished my session I have a chat with him and we decide on what needs to happen now to get the garden winter ready. The peonies and some of the bigger perennials need to be cut back quite harshly to leave room to put some new clumps of spring bulbs. I make him tea and leave him to it so that I can change. My partner goes off to the dentist and I settle down to update the blog and check the progress of the curry. In the background there is an ice hockey on.
My evening is Mock the Week and chicken curry as I run out of energy. I try to ring my sister but cannot get through so send an email. It remains at the top of my the list of things to do. I finish the blog for the day with a sense of distraction that somehow things are not right. Tomorrow I have meetings to start my day and then a load of evidence for a TC accreditation to review and organise for a visit coming up soon. I sense I am not attending to some of the important things.
Tuesday, 9 o’clock, bugger I’m in a training session in half and hour. I make it full of coffee and muesli. For four hours I listen to stuff about personality disorders and wait eagerly to get to the psychopaths. We never do. Its time to put tonight’s meal in the new croc-pot. I beaver away and soon there is a beef bourguignon in the pot timed to be ready about 7 o’clock tonight. Time for cheese on toast and to open the morning mail that looks exciting.
My first parcel turns out to be my new ice hockey jersey, our local team Coventry Blaze. I’m very pleased and of course I’m in it straight away.
Coventry Blaze is now in my collection.
I am really chuffed but there is more surprises to come. My sister has sent me a parcel full of surprises. As always she has found lovely cards. This time there are cards from Nonsense Botany and Nonsense Alphabet by Edward Lear.
Just loved these cards.
Along with the cards and some Royal Academy of Arts magazines there was also a cosy alpaca scarf to keep me warm when I go to watch the Leicester Tigers. It is indeed very warm and light, I like it a lot.
A new and cosy alpaca scarf.
There was one more surprise, my sister had included a cheque as a contribution towards the needs of the family we try to help. She had seen the video on the blog and spontaneously offered help. Without any ado I paid the cheque in via my app and then sent the money to Shri Lanka. The family there have already started to use what we sent to renew the broken door and order the “stone” required to renew the building. My sisters contribution will mean a lot to them. They have promised to send videos of the work they do as it gets done, something I am looking forward to.
I get myself organised to go to the gym putting the bins out as I go. I get to the gym and spend an hour on a cross trainer burning off 715 calories. A post training coffee and cookie as I wait for my partner who is going to arrive to do a pilates group. Time goes on and it becomes clear that we have missed each other so I drive home, put the potatoes on and start the blog. Tonight is a football night as England take on Hungry. My partner returns home and I dish up the meal as the teams come out to play. The meal was very good, even if I say so myself, far better than the mediocre display by England’s team. I continue to write the blog before downing my drugs and going to bed to read. Tomorrow is an Elders meeting and then I am hoping for a gym session and a swim. My gut is still sore from yesterdays injection so it will be one more dose of paracetamol.
Monday and its a training day so I have breakfast and set myself up in front of my screen. Happily a friend rings and we chat about how this Monday is and how managing COVID and work is going. Then I am sat in front of a screen observing the training day. I recognise some people on screen and wonder why they are there and why they are not using the resources they already have.It seems a common theme is that staff do not want to do the EE stuff. The old issue of leadership and management seems to continue to be at the root of so much. I keep going but leave when it comes time for me to go for my 28 day injection.
Well I hit the jackpot, not only did the new nurse give me my 28 day injection but I also got a pneumonia inoculation. So its a sore gut and arm this month. To add to my joy I booked my COVID booster for Friday. I return home to a chicken soup lunch and then I am straight back to the EE awareness training. I am intrigued by the way the management relationships and style get reflected in some peoples contribution to the session. The session comes to an end and I clear some outstanding admin tasks. Time to clear the kitchen, empty the bins and make it hygienic enough to cook food in. As I do this I notice that the bird and squirrel feeders are empty. I go out and refill them. My next move is to change in to my training gear read to row for a while. As I make my way to the garage I notice that Squishy and Squashy are having tea at the feeders. I really like my young squirrels and feel happy that they will have eaten well before tonight.
Squishy and Squashy having supper.
I continue to the rower and grind out a half hour at a reasonable level but my injection site feels sore and I am beginning to feel my usual 28 day reaction to the injection.
A reasonable jab day session.
I finish the session and retreat to the sofa to record the session. I change and settle to write the blog till tea is ready. Tonight is the mental challenge of Only Connect followed by University Challenge, it confirms my view of my cognitive abilities, logical and creative but a useless memory for anything other than images. So I shall take my mental beating,write the blog and then try to continue to read my current novel. Tonight is the night I take more paracetamol and hope for sleep.
