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.
Sunday and I am up and off to the shop for chocolate biscuits, cake and papers while my partner cooks me a breakfast bacon bagel. We have just about finished breakfast and cleared away when our visitors arrive. My nephew and wife bring there five month old daughter to us. She is of course just beautiful and a delight. We sit and chat over drinks and biscuits while my grand niece charms us. Have I said how lovely she is?
Enigmatic
Revolutionary
We chat and all have a chance to give the youngest member of the family a hug until its time for us to say goodbye. We wave them off and return to our Sunday. I unbox the croc pot that has been delivered during the morning and start to prepare our first meal with it while my partner goes to see her mother. My eldest daughter goes to the shop for onions and returns as I start to put ingredients into the cooker. I settle down and watch a rugby match as I do the weeks Tesco order and book next weeks slot. My partner returns and we ring our youngest daughter to see how she is. She is excited as she and her partner have signed the contract for their house, however she had no time to talk and arranged to call tomorrow.
I write the blog as the tea cooks and look forward to my evening of Strictly and an early night. Tomorrow is 28 day jab day, a zoom training day so I preload with paracetamol. I did weigh myself today and found I had slipped over 95 Kilos. This is not good, it means I need to change what I am doing. It means a change of diet and it means a more intensive training regime. I had hoped that I might have some physical credit in the bank, that an odd biscuit here or there would be okay, but its not. So tomorrow and tomorrow and tomorrow and tomorrow and tomorrow until the new year of 2022 dawns it must be different.
Friday, I collected my drugs as Monday is my 28 day injection day, which means a weekend of prophylactic paracetamol, not my favourite time. I spent the morning doing very little really till lunchtime when I gave my eldest daughter a lift to circus skills while I carried on to the gym making a call to a friend as I go. We catch up and talk about how disruptive COVID in the household is. At the gym I cross trained, swam and steamed myself. By the time I was done my partner arrived to do yoga so I retuned home to cook the evening meal and watch a film stopping at some point to order a croc pot. With this gadget we can put a meal in before going to the gym at the end of a working day and not have to cook at stupid o’clock in an evening.
Saturday and it is the usual ritual of bacon bagel and putting the washing in. Then my partner and I go off on an adventure to research mattresses. We drive to Dreams in Nuneaton and engage in technological banter with the sales bloke. Usual sales chat but it helps knowing what you want. Rock hard should be simple but the labels include crap like how many recycled plastic bottles have been used in each mattress. As for spring type and fillings there is endless crap to be ploughed through. Then there is the issue of whether a super king mattress can be got into the house and bedroom without bending it because as any fool knoweth that to bend a mattress breaks the side bars and it wont sit flat on the bed, hence the exploration of zipped half mattresses. Laying on show room mattresses is such a strange experience. It seems to me that my body plays tricks on me. How can a “very firm” with 4000 springs feel softer than a cheapo 1000 spring one. The one that feels the firmest is about £700, however a top line one at Dreams could be over a £1000. We gather up literature and I take photos of labels and info boards. We then drive to Leicester to have a coffee and muffin before going to Lewis to lay on their mattress selection. Even more confused here. We find a familiar brand and it feels completely different from the upper the range. I am staggered that some of the upper range ones cost upward of £3000! We gather more pamphlets and lay on more mattresses. By the end I am totally confused, I’m sure my body is having a laugh, I just want to go home and re-acquaint myself with the beds at home, one of which we want to replace and one we like and is our “role model” for what we want our new one to be. I am convinced that the “role model” is the cheapest one we found in the last shop. Can it be that the cheaper ones are constructed to be less comfortable and hence are just “hard”. How delicious an irony if this is the case.
We return home, have sandwiches and settle down to prepare teas and watch Strictly followed by the second half of the England game. Time to catch up with the blog, resist the temptation to stay up for the Fury- Wilder fight and instead prepare to meet my grand niece tomorrow. Interesting being a grand uncle.
Thursday and I have a meeting at 9 o’clock. A swift breakfast and then I am sat in front of the screen. It’s a productive meeting and by mid morning it comes to a conclusion and I am free to catch up with my social media. I find a video from our friends in Shri Lanka with several messages. I watch the video and I am set back on my heels as I see how the families home has deteriorated since we saw it ten years ago in 2011. It was basic then but clearly things have got worse. COVID has hit Shri Lanka hard and things have become very difficult. The messages from the families eldest daughter tell me that the whole family has an income of only 30,000 Shri Lanka rupees, a month which equates to £110. There are four adults and a young boy the family. The video makes me realise just how fortunate I, and my family are. In case you are wondering the video was made on the pone we provided so that the children could continue to study during COVID. The daughter sent messages asking me to show the video to all my friends and family and so I have included it here. I am not expecting anyone to do anything or contribute but I think it important to know that others in the world who are friends are struggling to survive. I am sure our friends are not alone in their difficulties. This family are survivors of the tsunami that hit Shri Lanka and have been living in the same emergency concrete cube temporary housing sine that time. It seems as ever they are trying to make the best of their situation but COVID has placed yet another obstacle in their way.
I will not be complaining about my situation again, the gift of her video has once again jolted me back to the reality of the world. I and my partner will of course respond.
At lunchtime I bathe and get ready to go to my very first chiropody appointment. As I drive to the appointment a friend calls me and chats about how the family are coping with one of their daughters having COVID and the situation at her school. I arrive at the chiropodist to find her rearranging an appointment for someone one whose partner had died unexpectedly. A difficult call to hear. I am ushered into the clinical room and seated on the special chair. My socks are removed and my feet are examined with a running commentary on how they are. They are in fact “good feet” but need a little work. My troublesome big toes will need some attention. The chiropodist sets to with a scalpel and then her high speed grinders, filers, buffers and sanders. In order to sort my left big toe out she had to cut my nail back a long way on one side which made me wince but was necessary. She finished the work and finished by massaging lotion into my newly gleaming feet. I have to say my feet felt very happy and comfortable. I know instantly that this was a good idea, one of my better decisions. I follow her into the reception area and waited to hear the bill. It is £29, a genuine bargain, it is the best £29 I’ve spent in a long time, although I do reflect that it is 7900 Shri Lanka rupees and the equivalent of just over a third of our friends monthly family income.
I drive home, eat and change into my training gear and go and row for half an hour in the garage. It feels that I am coming down with a cold as my nose is streaming so I do what I always do and that is try to burn it out of myself by training. The session is sluggish and hard work, so I am clearly under the weather a tad.
A session that will do for today.
I record the session, change and eat tea, the usual Thursday tuna pasta. I settle down to watch the Great Britain women’s ice hockey team beat Iceland in a pre Olympic qualifying game and then write the blog.
Wednesday, bin day. Breakfast of muesli and then some bed stripping, laundering , hanging out, tidying, bedclothes changing, ordering drugs, booking Mondays jab appointment and doing a bit of admin work. So by lunch time there was still training to be done and some tidying before our guest arrived. Frankly I’d had enough so I went to the club to drink a quiet cup of coffee and do a bit of google research. I decided that the Bond movie at three hours long was an ideal afternoon escape so I strolled over to the Vue cinema and indulged in a reasonable film and a packet of fruit pastilles.
I was quite pleased, given my condition, that I managed the film with a single piss and that “excuse me, sorry” shuffle down the row. Film over and everyone dead ready for an 007 reset I decided to eat out as well and made my way to Frankie and Bennies as the decent Italian could not give me a table for an hour. Frankie and Bennies has taken down all its signature photos and covered the walls in bland non COVID harbouring paper. Its even more soulless than it was before. The bruschetta was okay but they had no macaroni cheese. I selected Spaghetti Bolognese as an alternative, a poor choice as the sauce was insipid and tasteless. I tried to end on a high by choosing the exciting sounding Tolberone cheesecake, another mistake but at least the black americano was hot. I also discovered that this week is dyslexia week, my week! This invaluable piece of info came via LinkedIn, I see no evidence that it is recognised anywhere else. Perhaps I should wear a badge with some bollocks about a hidden disability along with one that says I’m dying of cancer and see if anyone notices or which one they think is more notable. I pay my bill and drive home via the garage to top my tank. I seem to put a lot into the tank but my mileage calculator in the car does not seem to go up very much, I am suspicious.
I think there are tipping points in the experience of cancer, today was one of them or at least raised the issue of there being tipping points. I realised to day that there are two distinct positions with this diagnosis. You either fight to stay alive, e.g exercise, diet, research, stay informed, stay engaged with the world and continue to try and make meaning of life and ones personal internal universe or you settle for dying in as peaceful and quiet way as possible. In short you quit because it does not make sense to go on doing all the other things that give you the allusion of agency and purpose. I think the divide between the two is subtle and very fragile as time goes on. Those moments when the aggregation of the worlds aggravations coalesce to raise the issue of a tipping point are unpredictable and certainly caught me unawares. It is something I need to learn, to recognise and to be clear about. On the other hand my life is now too short to be taking any more shit than I need to.
I get home and retreat to the peace and quite of the bedroom to write the blog and reflect on the day. Tomorrow I have work and my first visit to a chiropodist to sort out my chemo thickened big toe nails. Now life does not come any more prosaic than that.
Tuesday, the day the bin goes out and I get a day to myself. It starts with a muesli breakfast and then I head for the Shed to write letters. I notice the squirrels, Squishy and Squashy, have emptied the bird feeder and refill it before settling down to write. I spend the morning writing letters whilst a friends lavender candle scented the atmosphere and the heater kept me snug. I have a growing pile of envelopes but my stock of pretty writing paper is almost spent. At lunch time I have soup and walk to the post box to send my letters on their way. It is then time to do some Christmas shopping. I browse and research and by the end of about an hour or so I have cards and wrap with one or two luxuries to nibble. Christmas fun over I set about some enabling environment work and organising some future training sessions. By late afternoon I’m ready for the gym. My partner and I go to the gym where I cycle and cross train burning off about 500 calories. After showering I sit in the lounge and order an Indian meal and then my partner and I race home to be there to collect our meal. Its the wonder of technology and the encouragement of sloth that makes this possible. Having said that I am pleased to tuck in to my butter chicken and not have to cook. I watch the conclusion of the current Silent Witness episode and start the blog. It feels that like this is one of those periods of humdrum routine which I hope will keep me fit for as long as possible and will help hold my own at least up until my next oncology appointment in December. On the day of my appointment I have booked a pantomime for the evening. It seemed apt.
Monday: up, breakfast, a welcome phone call from a friend and then I am in front of the screen for a morning meeting. Lovely people and doing their best so a good experience. The post arrives and I have the excitement of getting a letter. I do some admin and then go for a lunch time walk with my partner to buy a paper, flowers and some buns. A brief lunch and I take time to read my letter, which is a really nice thing to be doing. I am soon back in front of my screen for a team meeting. All of the afternoon is passed in the meeting and then I am doing more admin including sorting out my invoices. There is a brief brake to take the Tesco deliver in and then there re more loose ends to sort out. By the time its time for tea I’m up to date with my invoices and ready for tomorrows work. WhatsApp crashes and several hours later is still down.The evening is the weekly challenge of TV quiz programmes. Then its the blog. My plan is to spend time at the gym tomorrow, to get out and about, perhaps even breakfast after some exercise. Time to leave the the sofasit.