Monday and its the first day of my partners holiday and a weeks leave for me. While my partner goes to the shop I sort out my drugs with the GP. I had had a letter from the doctor I had talked to earlier the previous week. It was a good call but the letter was less well received given it designated the wrong leg as having had the DVT. Cannot win them all I guess. So a breakfast of bacon bagels and we set of for Barnsdale Gardens, all 38 of them. A unique collection of gardens, all with a specific theme or function.
We started at the café with coffee and hot chocolate and toasted tea cakes to fortify us for the walk round the gardens. I found my debt card would not play the contactless game, which is a pain I will have to sort out. We wandered round the gardens and fell into the trap of stating “we’ve got that in our garden”. Each garden had a helpful board giving the rationale for it and some history in some cases.
We walked around and picked our favourites keeping our distance from the other strollers. My favourite was the gentleman’s garden, which combined three areas of flowers, herbs and vegetables complete with hive and greenhouse. It was very neat and efficient. We got round all the gardens and decide to return the café for lunch. They did a good ploughman’s bite, which I washed down with ginger beer. Once we had paid, my card still did not work, we wandered round the nursery which is adjacent to the gardens. Nothing tempted us and it was the same in the shop. The drive home past Rutland Water was pleasant.
Home and I head for the shed in my cycle gear to get an hours exercise in before tea. Hard work at the end of the day. So back in the house it is time to read an e letter I got today and write the blog.
Saturday and the expectation of hosting friends for a meal for the first time in almost 6 months. First though is to get out into the open air for a walk and some exercise. We have a good breakfast and get ready to go out. We drive to Beacon Hill and after a couple of circuits of the surrounding roads we get into the lower car park by the café. We had thought that we had missed the sculpture trail but found it was still there to be seen. Its not exactly YSP but it is the work of a local sculptor and an interesting initiative. There is certainly scope for a sculpture site in this setting.
We walked the trail and then discovered that there was a tree walk featuring the 27 British native trees. So we strolled our way round endeavouring to spot the indicated trees. mostly obvious but there one or two that were a mystery.
Some of the trees are a bit of a mystery
Having walked the tree trail we retreated to the café for a coffee and toasted tea cake. We sat at an outdoor bench and watched the families that were picnicking around the area. Social distancing was well in evidence and everyone seemed to be doing the right things. I am reliably informed that the Leicestershire park car parks had made more money in the last two months than they usually do in an entire year. More proof that people have retreated to the open air as a safe space in these COVID days. We drive home and begin to get ready to entertain our guests despite our boiler failing. We prepare our dishes and lay the table with our best crockery and tidy up to be guestable. Our evening is full of food and conversation was a delight. It was so nice to be able to cook for friends again and to sit in the comfort of home and catch up. Alas the evening came to an end and we waved our friends off in to the night and then we headed for the kitchen to clear the debris of the evening.
Sunday and we wake up with a “food hangover”, we had not eaten so much for a long time. A four course meal had left its mark on us, so we were rather slow to get up and start the day. I finally got up and performed my weekly weigh in. 95.8, a loss of 0.1 Kilos, not a lot but despite my feasting I have manage to hold my own in weight terms. I need to put in a good weeks training and careful food management if I am to keep my weight going down.
So after a frugal breakfast I set about exploring why the immersion heater in the bathroom linen cupboard was not working. Fuse was okay in the switch so it was down to getting the top cover off and seeing if the reset button was working.
The immersion heater thermostat
Hurray the button clicked and it made the slight hissing noise it should do when it starts up. What was disconcerting was the slight spark that appeared when I adjusted the temperature setting. I left the heater to get on with its work and googled a replacement thermostat. So I new one is on its way and if necessary I will replace the existing one. Success the heater worked and so we maybe without a boiler but we have hot water to see us through till the boiler is repaired this week. I replace the towels and feel a sense of pleasure at the newly folded and stacked towels.
My obsessive pleasure in sorting out the towel storage.
I was on a roll so while I was at it I re-fixed the towel holders, using my tricks of collecting drilling dust and measuring the drill depth required for the rawplugs. The outcome; secure, non wobbly towel holders. Go me!
After a brief lunch we went for a walk in our local park to feed the ducks and get some fresh air. Once again everyone seemed to be doing the social distancing well. When home I settle to watch the end of the cricket before tea after which I settle down to catch up with the blog before watching Strike at 9 o’clock.
Gas fire serviced, lawns mown (not by me), and a trip to Sainsburys. A ghost shop with plastic boxes and an empty car park.
Sainsbury’s a ghost shop with cubicles.
So I spent my afternoon cooking beetroot and hard boiling quails eggs before marbling them. Once that was sorted there was time to whip up lemon mousses for the meal we are cooking friends tomorrow. However there was a moment to wander the garden and bump into my resident bee busily about his business.
Oh brave new world that has such creatures in it. Any way I now have a fridge full of goodies and an evening well spent.
I woke up today with the instant thought of “Fuck it the boiler needs sorting”. Reluctant to get up I got dressed and went down stairs in to the office where my partner was already looking at a full diary page. I retried to activate the boiler more in hope then expectation. No joy, its still fucked. I make coffee and breakfast egg noodles, then text the boiler man, who says he will come in the afternoon. I move a car off the drive to give him access and bring in the garden waste bin. So chores done for the moment I go on e-bay and look for Marshall McLuhan books so that I can research a debate that I am going to do at a conference in November. There is something about acquiring packets of knowledge and I am excited about their arrival. They will have to live in the shed with me. More coffee and I take my drugs before getting ready to trudge through the pouring rain to the shed to amuse myself till its time to host my open forum. I spent sometime playing with a craft kit with Christmas in mind, until it was time to get ready for todays open forum.
I have been hosting this forum for 22 weeks now and I still have moments when I wonder what I am doing on this impossible media. The participants are an interesting group and they seem to get a lot from one another and I get an insight into what is going on in the world of Enabling Environments in the criminal justice world. There is a part of society that lives in our communities that are attempting re-entry to the normal world. At this time re-entering society in its COVID state is a severe challenge to those trying to. I am full of admiration for those people who work through everything to try and provide the support that these people need. I finish the forum and before I write up my weekly notes I divert myself by updating the Tesco order due for delivery tomorrow. We are going to entertain for the first time in almost six months so there are some additional goodies to get. I miss cooking for friends, I like to see people enjoy fresh food that I have cooked, there is something primal and right about it. I guess sharing food is the most ancient of ways of expressing caring and acknowledging the interdependency of the species.
Tonight is my favourite meal of the week, tuna pasta, which will be followed by more Heros, I suspect, but of all of this is dependant on the boiler man turning up and doing his magic. So I wait with anticipation and a nervous lower half of my wallet.
Its a year today that I begun to write a blog of my cancer experience I started the blog in order that family, friends and interested others could keep track of my progress. The idea was to save everyone the hassle of having to ask me how I was or what was going on. I thought it would be easier for everyone to do it this way. Of course it did not mean that people could not ask and many did for which I than you. It means a lot for people to feel able to ask and it should not be underestimated how being asked helps to reduce the sense of being on your own with cancer.
This day a year ago I attended my pre chemo induction at which I found out I was going to start chemo the following day. I bit of a surprise at the time. It was a strange day especially as it was sprung on me that I needed to start feeding myself steroids. The steroids that ended up piling the weight on me that I am now still trying to loose. I started out at just under 92 Kilos and end up 102 kilos. So now I’m beginning to slide down the scales at half a kilo at a time. Down to 95.9 kilos, at least another 4 or 5 kilos to go. The joys of medicine eh!
It was a day I began to explore what was possible in writing a blog. I had to find out how to get a site, and email to match and sort out a look for the site. I guess it was quite crude to start with. However it seems to have done the job.
It was a day that has recently come back to me as I become aware of the anniversaries of my illness and treatment. It was not a pleasant experience the first time round and it is not being much fun the second time. Although my mantra is that yesterday is done and today is what needs focusing on I find it difficult to push the memories back. So today has been a bit of “heads down and get on with it” day.
For those interested in the that very first day of steroids and blog the following link will take you there. https://prost8kancerman.co.uk/induction-day/ As you will see it was a bland, imageless and colourless attempt of a first blog. I’ve learnt a lot, in many different ways since that first try.
Fortunately today has been a busy one with work and entertainment to keep me occupied. Soon after breakfast the Hippo van rocked up to tack their bag containing our old fence away. A brief but strangely interesting activity.
Farewell to our dead fence.
So after the excitement it was down to work and making calls to services and following up the work from them. By the time this was done it was time to down a bacon bagel and get ready for the days Open Forum. Another interesting hour past with some acute perceptions and observations of what is happening at the moment in prison Therapeutic Communities. After the forum I wrote an abstract for a presentation to be submitted to a conference organising group. A colleague and I have agreed to rerun the debate we did at a annual forum earlier in lockdown, only this time we will refine and extend it. I sent the abstract to my colleague and I changed into my training gear. I my search for weight loss with some strength building I decide to use my weights vest and wrist weights. I had forgotten how heavy the weights vest is fully loaded but managed to get it on the right way round on the second go. I pedalled away for 45 minutes, ten of which I wheezed through using my altitude training mask. It was a long 45 minutes as I listened to the rain spatter on the shed roof. I kept going by playing the Leggo “everything is awesome” anthem. I was well tired by the end of the session as I trotted through the rain to the house.
I changed and found my desire for a bath thwarted by our boiler continuing to play up. So I settled down to begin the blog. Tonight we will east dinner and watch some more Heroes, it is quite addictive, and leads to fantasies of having “powers”. I quite fancy the one where I could heal and regenerate my body. Not surprising really.
I left the blog yesterday heading for the comfort of a bath and in that endeavour a found a new friend.
My new bath time friend
I am assuming that this is a cricket. This of course begs the question of what is this crickets name. Jiminy is a bit obvious so I think I will go with Heyhoe , after Racheal Heyhoe-Flint. Somewhere Heyhoe is keeping herself warm but to day I’ve not been able to locate my cricket friend.
Today started with noodles for breakfast and then before I could escape to the the sanctuary of the shed I was ensnared by Enabling Environment e-mails. I spent the morning replying to enquires and sharing information whilst trying to download some contract attachments. It funny how things roll in clumps after a period of dormancy. By the time I had finished it was lunch time, when I finally escaped to the shed to write letters and to make out my August invoices. I came back to the house to use the Wi-Fi to send my invoices and then trotted through the waiting chores, like filling my drugs wallet for the week and putting out the bins. I popped out to ensure my letter got in the post. Back in the shed I hear someone I know talking on Radio Leicester about new ways to bake potatoes and this weekends virtual Pride for Leicester. We exchange messages afterwards and catch up. Time to train. I change and get aboard the exercise bike and do an hour, while my partner and daughter go for there daily exercise walk. I’m still pedalling as they return. Time to change and have tea before writing the blog, perhaps I will look for Heyhoe again and watch some more Heroes.
Sunday; only one things matters, the result of the weekly weigh in. As usual I got myself as light as possible and tiptoed onto the scales.
95.9 Kilos
This is a result and meant that I did not need to train for the day. What it also meant was that I was up to greet the plumber who arrived to rescue our boiler that had stopped working. The boiler has a problem related to a strange phenomenon which means it sucks in water where it should not due to a mysterious vacuum that gets created in the outlet system. All it needs is a quick release and the water drained out of the U-tube trap. For him it was a five minute job, which he did quickly and efficiently. We had the “what this really needs” conversation and agreed he would return next week and fit a value that will rectify the problem, he thinks. I love a good theory. For the rest of the day I gardened, rescuing tomato plants and preparing for the autumn. I also found a busy bee about its business.
Oh to be a busy busy bee.
Monday, bank holiday so doing something outdoorsy was on the cards but before we could go out there were birthday presents to be order for Sweden and wrapped for Loughborough. So breakfast done and presents sorted we head for Beacon Hill for a midday walk. The place was much fuller than the last time we visited but undeterred we set off for our stroll, taking in the GPS ordnance survey point, a carved head and a good view.
Having strolled and viewed the country side we dutifully socially distanced queued to pay for the parking and drove over to see my partners mother and deliver birthday presents for tomorrow. We stayed and chatted and then drove home. I prepared one of my famous one pots and popped it into the oven and went to train in the shed while it bubbled away. I have a lot of training to do to get to my first target weight of 95 kilos, it would be nice to get there this week, so I wonder if a kilo is possible this week. I’m going to give it my best shot. I shall watch Strike tonight and if I am lucky I will get a soak in the bath.
Saturday the Wolf has gone so there is room in the garage now.
The Wolfs space is now taken.
Breakfast is followed by tidying up and putting things away for the Bank Holiday weekend. Trying to place all the accumulated paperwork from the last couple of weeks was an interesting challenge. While the weather was reasonable I headed into the garden to harvest the meagre crop of runner beans and re-stake the tomato plants that are valiantly still trying to flower and fruit. As I tidy up I have the pleasant surprise of finding yet more new blooms and a rather pretty caterpillar.
As the rain started I abandoned the garden, taking in the washing as I did and got into my training gear. In the shed I cranked up the heater to full and pedalled away for an hour or so. I was saved mid way through by partner returning from a trip to town who turned the heater off. Training over I watched Liverpool loose to Arsenal in the Community Shield on penalties. While preparing tea I noticed the boiler was not working and would not reset. It made a distinctive bubbly sound as if floundered. No option but to turn it off and text our local boiler man, who being a hero text back to say he would see us at 9:30 tomorrow morning. He is truly a hero.
The evening was full of Heroes till it was time to write the blog. Tomorrow is the day for the weigh in but as I have been less than active this week I am not hopeful of seeing a weight loss. We shall see.
It is an in controvertible fact that motor car traders are bastards. I go to my “we buy any car” appointment having been offered a valuation of £950. I of course expect a hassle. I arrive and an over friendly person, over weight, and a prole sack dress sense takes my V5 to “check it”. This person returns with a clip board and wanders around the car pretending to know what is being looked at. A few lines are scribbled on the board while I remain in the car and watch in awe of the technical expertise that this person clearly has no idea about. It disappears into the shack to check “what they can offer”. It got all the hallmarks of bullshit written all over it. It strolls, actually more rolls, out and says “we can offer you £700”. I immediately indicate clearly that given the low mileage, good condition, the full years MOT and excellent running order that their offer was derisory and that I would not be accepting their offer. My V5 was returned with the most insincere platitudes of understanding. I drove off cursing myself for being so optimistic and hopeful, older, wiser and even more convinced the motor trade is shit.
I get home and log onto Gumtree and for £26 put the Wolf up for sale. Its an easy process and very effective. The moment the ad went live I got a text offering me £500, which I politely declined. Then a call and then within three minutes I had sold the car for £850. A weird guy who told me a story of being gazumped on a car in Nottingham and said he would pay cash, arrive in two hours and asked if I would take the ad down. I said that if we had a deal then I would and he asked that I save his number and use a password to check it was him. Redbull was his choice of password. So I waited for two hours and he rocked up with a “mate” who turned out to be a mechanic, which on his performance I believed. We go out to the car and start it up while mechanic man looks and listens under the hood. He notes the fan has kicked in on start up which is unusual. He notes the coolant is not the nice pink colour it should be and is in fact very dark and dirty. He also checks the oil level and finds its low and generally the car needs a service. I go for a drive with mechanic man, who drives and we “idly” chat cars and garage space and driving history and al the casual car inquisition crap yo expect. We drive a village down and back. On our return we flip the lid again and he looks again at the engine, he’s not convinced, I can tell. He then notes that the cylinder head gasket is leaking oil at the rear and to one side! Bollocks I think I’m stuffed, this is a major negotiating problem. We lock the car up and the more rotund and surly one starts with the “we are interested” speech. Here we go. “I’ll offer you £400”. “Fuck off and go home” was the start of my rant, which continued as I walked back down my drive. The mechanic, at least looked a little embarrassed and started to make excuses for his fat moron friend, and then we started to haggle, he trying to say he could see I was an alright bloke and could we at least talk. We talked and I refused his offers and then said if we could not get to £800 I was out and started to walk away. At that point we agreed, shook hands and we went inside to do the paper work, while my daughter counted the money. With everything signed off they left. I waved them off partly relieved that moron man had given me good reason to be righteously indignant and knowing that a leaking head gasket was worth more than £50 off the asking price. If they had been reasonable in their offer I would have been knackered.
I waved them off and immediately got on the DVLA website and reported the change of ownership, job done, almost. I then spent several minutes waiting on the phone to Sainsbury’s insurance before getting to tell them not to renew my insurance, which was due in 10 days. So I was at last Wolf free, road tax free, and insurance free with money in my back pocket. A day of aggravation, adventure and interaction with my fellow species members that did nothing to raise my opinion of the motor trade.
Just as I finish all my car chores my partner and her brother arrive home from a research trip to a mobility centre with a view to convincing their mother to go for one. Nice to chat and relax after such a day of lows and highs. My evening was quietly waiting for Tesco to save us from starvation and a chance to play hide and seek provisions. Then more Heros and a chance to blog.
It’s been a while. It’s a combination of business and a certain reluctance due to this being a period of time when lots of anniversaries of my illness are coming around. This has been prompted by our current correspondence with the financial Ombudsman as we argue over the issues related to my time in Jamaica back in March 2019. I also notice that not many people are looking at the blog, but as it was only meant for friends and family that’s okay. I guess most of the odd people that dropped in occasionally will have got bored with the humdrum nature of my daily life, with or without the cancer element to it.
On Tuesday of this week I took off and went to have coffee, lunch and conversation with a friend at the Yorkshire Sculpture Park (YSP). It was my first “long haul” drive and my first trip on my own to see someone outside the family. I was quite nervous about driving a reasonable distance, not because I did not think I could but just the time since I had done it. I think this is part of my institutionalisation and one of the reasons for my determination to get out in the world again and try and do ”normal” things rather than retreat to my shed as a first response to getting up in the morning. I need to know how the world functions at the moment in its new COVID form so that I can understand where there are new risks for me as a person who was told I had to Shield due to my vulnerability. That’s another part of my institutionalisation, the internalising of being “vulnerable” and as a consequence dependant on others for my safety. That does not sit well with me and I need to l know what the reality is. My basic view is I have a life limiting illness and I am not going to spend that time cowering in a corner, I intend to live it as fully and as well as I can. It sounds cold but it forces me to prioritise what is important and what is dross and to be discarded.
Any way I drove up the M1 and found that I was being very law abiding and pootling along at 70mph and negotiating the traffic and the rain well. It felt good to get into the car and settle into it again, although I was aware of tension on my neck as I concentrated on getting everything right. I also had to think twice about some of the controls for the “toys” on the car as I had not used them for a while, but it soon came back to me. On arriving at YSP the first encounter with COVID was my using an electronic ticket on my phone to get entrance. One thing that has increased during lock down is the number of Apps on my phone. The attendant scrutinised my phone ticket and waved on to the new one way system. I met my friend in the car park and we went off to have coffee in the upstairs restaurant. There was a one way system and a socially distanced queuing system for the toilets. The same one way system and queuing rules applied to get coffee and food. There were of course plastic partitions up at the counters and the staff all wore masks. In fact I also wore my lion face covering. We got coffee and moved into the dining area where the tables had been thinned and were far apart. It was strangely sparse with attendants in mask hovering with table cleanser. The tables slowly filled with a whole range of people and families with very small children who looked a bit odd in their “small people” face masks. We talked for a long time, interrupted only by bacon sandwiches and more coffee. It was a real pleasure to talk about the world and to hear about this COVID world from another view point than my own family. It was also good to talk about the effects of COVID living and compare the experiences of dealing with the restrictions as they had effected both our families. We took a walk around some of the grounds that are strewn with sculptures of all sorts of shapes, sizes and impact. The grounds are breath taking and incorporate a large lake that can be walked around, along which sculptures are studded.
The lake at YSP
We returned to the restaurant for afternoon drinks and a snack and watched as the rain poured down across the park. The experience of being out in the country was immensely relaxing and freeing, it made realise how confining lock own had really been and reinforced my sense that I needed to be getting out and about and doing the normal things again. I also realised that the world will be this new sanitised version but that it is doable. It also reinforced the knowledge that maintaining friendships and being able to exchange ideas, experiences and observations is vital to keeping reasonable, rational and thinking. We left as the restaurant was emptying and the attendants were spraying and cleaning everything, using the hand sanitiser as we left. Saying farewell I started the drive home in quite persistent rain. I was still a bit anxious about the drive but as the rain stopped and settled into the old routines of driving I found I relaxed back in my seat and enjoyed the last leg of the journey.
Home and I had time to reflect on eh new COVID world and the fact that everyone else in the world seem to be just getting on with it with some or little adjustments. I recalled a virologist on TV commenting that the incidence of COVID virus I the population is generally low except in those areas where there is a spike. My experience of YSP would seem to support this in terms of the way most people are responding to it. So I settled into and evening of Heroes and with a long to do list for Wednesday.
Wednesday arrived and I set about my long to do list. First was another trip out to buy a Hippo bag in which to dispose of the fence that was to be taken down later in the day. Our local B&Q provided the need bag and I returned home to start on the various tasks of the day. I have decided to sell the Wolf, my Suzuki Jimny, I can no longer justify keeping a second car, the garage full and the expenditure for the very few miles that I drive it for.
The Wolf
Having got it through its MOT on Monday now is the time for it to go, so I did the “We Buy Any Car” valuation on my phone and found they were offering a couple of hundred more than they did pre MOT. An offer too good to refuse, so I booked an appointment for Friday. If I sell it on Friday I avoid a full years tax and insurance, which is a lot of taxis or hire car days. Feeling efficient after this I moved onto finding a stained glass repair service and sent them photos of our front door with its damaged circular glass panel and asked if the work can be done. I await a response, I suspect it may be too boring or too small to whet anyone’s appetite and we will resort to more stick tape, plastic sheeting.
By the time it came to the open forum that I attend on a Wednesday I had dealt with some work e-mails and was looking forward to a good discussion. It never happened, Icould no tget in on the lonk and I heard later that no one turned up. As the rest of the world gets on with life there is no need for a forum to talk about getting back to normal and dealing with COVID, people are, so they do not need a forum any more That’s my view an I think I am probably right. I will see if anyone turns up to the one I host on Thursdays. I hope they do for a little while yet as I enjoy hearing the experiences from around the country in the various services that are represented.
My afternoon was one of grunt and carry as our gardener, Dan, turned up with his chain saw and equipment to take down the back fence in the garden. I unfurled the Hippo bag and acted as labourer. I humped the bits of chainsawed fence to the Hippobag set up in front of the front hedge of the house while Dan sliced though the panels and reclaimed the posts that were worth saving.
One dead fence waiting to go
Good old fashioned manual labour that works up a sweat and makes you feel you have achieved something when the job is done and done well. As the neighbours over the back have put up brand new fences I have no need to put a new fence up so the back end of my garden now look really good thanks to their new fences. Sometimes life smiles.
So as the sun shone I felt pleased with the decision and the outcome and was ready to watch more Heros during the evening. I am beginning to wish Heros was at an end as I find I am not reading at the moment and I want to finish Girl, Woman, Other. I note that there are another two series to go when I do get to the end of this first series of Heros, I might have ot pace myself.
Thursday starts with a phone call from the hospital to check on my DVT. A socially skilled doctor chatted for 12.5 minutes about my DVT and medication, in contrast to my oncologist who could not get off the phone fast enough. We discussed how Iwas and agreed to reduce my apixaban to a prophylactic dose for the next six months and if all goes well he will sign me off but keep me on the prophylactic dose for the foreseeable future as my cancer is a precipitating factor in DVTs. I came away happy. So here I am writing the blog when I am not tired and trying to get back to what it was intended for. I think part of my abruptness of entry has mostly been due to tiredness but also the re-stimulation of al the Jamaica stuff and what followed. My phone is a running history and as I have had to refer to it a lot in order to frame a response to the Ombudsman I have found myself siting with a lot of memories I thought I had moved on from. At the moment I am combining the philosophical saying that life is not a problem to solve but a reality to be experienced with my view that yesterday has gone, today is to be experienced and tomorrow is what I make it. Having these memories re-stimulated is a nuisance and makes experiencing today a little more tricky, however I have an open forum to host soon and Wolf to prepare for tomorrow, not to mention a training session to do.
