Tuesday and it’s not as good as it gets gain any more. I had my oncology review today. My PSA has doubled but the oncologist does not want to use any of his other tricks (if he has got any that is), until we make sure that the last one is actually not working, so he doesn’t want to base a change on one result. I agree, as I do not want to burn my way through the options too quickly. He recognised my worsening response to my injections but has nothing to offer on that front. Thats the way it is. So, we agreed on a fresh face to face review at the beginning of January giving time for two new sets of blood tests and a new scan. He who made a pact with the devil is no one’s fool and identified some of my worsening symptoms as me slacking on my exercise and diet. Bastard too clever for his own good if you ask me, but he is right. So, it’s not as good as it gets anymore because I’ve slacked and that has to change. Exercise, diet and lifestyle are the things I can control and so it’s time to up the effort. It’s time for Rocket the symbol I use to psychologically think about how I mobilise my resources against cancer to take front and centre stage. From now and till the next oncology review its Rocket days. I will be fitter; I will be much lighter than the 99.3 kilos I weighed in at on Sunday and I will eat a healthy diet, the one of my choosing. Above all I will exercise. I have two months to do this and to demonstrate that I can still make the act of will that takes me forward. The same will that quit smoking, dragged dyslexia to two degrees, ran marathons and forged a career that supported a family. It starts now.

After the review call, I went to the Shed, filled the squirrel feeder and then settled down to write a letter and a new to do list. This was all done as the rain poured down incessantly. I dashed to the house at lunch time to have soup with my partner. I returned to the Shed to feed the hedgehog. The food from yesterday was still there but I replaced it with fresh anyway, because my hog deserves the best. I put the bin out for collection and posted my letter before getting ready to train. I decided that I was not going to pussy foot around with half an hour and went straight to a 45-minute session on my cruise level. It was a reasonably good session for a first one back after eleven days. I only have to miss a couple of days and I put on weight and lose fitness. Of course, I have Rammstein loud in my ears.

I record my session and then draft the blog before the evening meal. My evening will be football and reading before a reasonable early night as I intend to see if I can get myself up for training at the start of the day. That in itself is a challenge, but then these are Rocket days now.

Monday and its Halloween, I wake up feeling decidedly “off”. I make breakfast and coffee and retreat to the Shed as quickly as possible. I spend all morning writing letters and messages. My partner goes off at lunchtime to do some shopping. On her return we lunch on soup and fresh sausage roll. It gives me a chance to read the two new letters that have arrived. A real luxury to have two letters in one day. I’ve struggled all morning with feeling unwell, energy low and I think anxious about tomorrow’s oncology review. My latest blood test results with the doubling of my PSA level have rattled me more than I realised.

I return to the Shed and continue to write and prepare messages. I recover some equilibrium and calm down a bit. I go to the post box and send the household letters on their way. Before closing up the Shed for the day I feed the hedgehog. It is already getting dark as the first day of winter daylight starts to fade. I change in to my comfortable all in one blanket and read the gas and electricity meters. I duly send the figures off via the phone app and note that we seem to have a very large sum in credit. I suspect that it will erode quickly over the next six months. The practicalities out of the way I give myself time to think about tomorrow’s oncology review. I write a list of items to share and to ask about. I suspect I will be listened to but at best I think they will agree to scan me again and see me in two months rather than four. It all depends on whether or not the team think they have any options left. When I was making my new training and diet journal, I was numbering the days to match the blog days but when I got to tomorrow, I stopped. It may be that I am about to enter a period of it not being “as good as it gets” and I may have another period of having my fingers crossed, or something else. So, tomorrows blog maybe titled differently.

My evening goes from the news to more rugby and drafting the blog, I shall hope for sleep tonight.

Sunday, clocks gone back as I get up to try and watch rugby on ITV Hub. No joy, the match is not there. I weigh myself and find instant depression in 99.3 kilos. Coffee and put the clocks back, fill the soap dispenser in the bathroom and then back to bed. Get up again and sort out the hub and watch the English women beat Australia after croissants and more coffee. My partner goes to the gym, I clear the kitchen, clean the shower head and then watch more rugby, followed by American football, followed by more rugby. Apart from sending some pallet information to a friend, feeding the hedgehog and put my washing away I’ve done bugger all today. Actually, not quite true as I have started a new diet and training journal. The highlight of my evening was the Tesco delivery and a delicious beef crockpot.

This has been a day to retrieve my balance, to be mindless for a day and calm down. Tomorrow starts my now familiar re-boot of diet and exercise. I shall start out yet again as regardless of what happens at my oncology review on Tuesday I need to exercise and lose weight. Time to grind again.

Saturday, and I wake up and process my blood results which I gathered after midnight last night. I did not sleep well as a result.

Overall, they are reasonable. The increased Urea is slightly raised and reflects either too much protein or not enough hydration, so drinking water and staying hydrated will sort that. I’ve been there before, and it has always responded to hydration. My eGFR or kidney function although below the normal 60 level is good for me at 57 given my history of kidney failure in 2019, so I am cool about it and think that it is okay. The real kicker is the rising PSA from 0.8 to 1.6 in four months. It is flagged as an alert on the results platform. I’m disappointed but at root I knew that sooner or later this was likely to happen. It makes my review on Tuesday more “sharp”. We will certainly have something to talk about. One thing that has surprised me is my rise in platelets to 171 a rise of 22. It’s been a while since I’ve so comfortably been in the normal range for this, no idea why.

I watch some women’s world cup rugby, eat the bacon sandwich my partner makes for me and drink fresh coffee. I draft the first section of the blog and get myself up for the ordinary of the day like shopping for vegetables and more bacon. I feel myself withdrawing and processing so I may or may not add to this day’s blog or not.

My day was quiet as I felt my way through the feelings about my blood results and the rising PSA level. It’s a difficult time, I am anxious, more anxious than I usually am, and I find myself rereading information about my treatment. If my medication has stopped working, then there needs to be a rethink. The problem I have is that I am not sure I trust the oncology service to pick this up with any sense of urgency. I am also frustrated and angry with myself for losing my exercise and diet discipline. Yet again I must start out again and focus on reducing my weight. Tomorrow I will weigh in and then move on.

Friday I am awake quite early as I hear my partner go off to work! I get up, have toast and coffee and then head for the GP surgery to have my bloods taken. I have totally forgotten to preload with water for the last 24 hours so my platelet count will probably be crap again. I arrive, book in and then take a seat, however I am called in immediately by the nurse. This woman is a goddess. She can get the needle in me without me feeling it and extract the required vial of blood before you can say “Bobs your uncle”. I am in and out quicker than a prime minister. Back home I read a bit and then go to the Shed. I am feeling a bit overwhelmed, probably the aftereffects of the conference. I write a letter and take my time doing it. It’s a slow morning. I finally get to lunchtime with the letter completed and make an egg sandwich for lunch, wash it down with coffee and then return to the Shed.

I am all written out, I think about another letter, but I have not got it in me so I cast around for something to do. I take down my paint pallet which is supposed to keep paint workable and to my surprise find the acrylics on it are indeed still usable. I rummage in my art bag and find a small board. I spend a lot of time just painting and using up the paint on the pallet. I appear to be fixated on gardens, trees and sky as this board turns out to be similar to one I have done before. It has taken time and distracted me for a while. There is a strange pleasure in playing with colour regardless of how talentlessly you do it. I guess it’s the process not the product.

Like all my others it will see it’s days out in the Shed. I pack up the Shed and go to the post office to send my letter grabbing chocolate while I am there. Back home I check Fort Hog and find the food bowl empty, so I refill it and reinstall the garden camera. I lock the Shed up for the day and return to the sofa to read, nibble M & Ms and await the return of my partner, who after briefly returning from work at lunchtime has gone off to see her mother with her brother. I continue to read Reaper Man. I like the idea of Death being made redundant due to developing a personality. Unfortunately, the consequences are tricky but amusing in Terry Pratchett’s Disc World.

My partner returns and after a coffee she goes to make tea and I draft the blog. My evening will be reading and TV as I wait for midnight to arrive. This is when the results of my blood tests are posted, if not tonight then just after midnight in the following days. They have to be on the system by Tuesday the 1st of November as this is the date of my next review by the oncologist. These weekends of waiting for blood results are always difficult as the logic of my life is in the arithmetic of the blood results. Either my status will remain “as good as it gets again” or something different. The something different is never going to be “better”, “as good as it gets” is really as good as it can get. Any change in the arithmetic will mean the wind is blowing harder on my dandelion life clock. Hence these weekends I can be a bit edgy.

Thursday and I wake up in my own bed to familiar sounds of the house. I get up to make breakfast, put my washing in and read the cards and letters that were waiting for me on my return from the conference. I take my time over the correspondence and indulge in a second coffee. I am aware that I am decompressing from the conference. It’s a sort of mental check to see how I am. You know when you fall over and you lay on the floor and mentally check your body over to see if you can wiggle your toes or if you are bleeding. I do a similar thing only I check myself in terms of all the symptoms of my condition. I’m tired but functional.

I am greatly heartened by my correspondence. I am very lucky to have people who write to me. I am also blessed by people who either give me books or recommend them. A woman at the conference suggested a book to me after I had made a public comment along the lines of “It’s because rich bastards own the land nobody can get access to nature”(not a complete truth but close.) Anyway, during a coffee break an unknown woman comes up and suggests I read a particular book as she thinks I will be suitably angry, based on the sort of person she thinks I am. I was so taken aback I ordered it instantly from Amazon. It has arrived and she was right, I’m only on chapter two and I am truly pissed off.

I also have a new book that I have been given by the friend that drove me to and from the conference. I have spent some of today reading it and as ever with a Terry Pratchett book I have smiled and laughed.

Lunch comes and goes, and I go to the shed and write a reply to one of my letters. I finish the pages and then check to see if the hedgehog has eaten its food. I am gratified that the dish is empty, I gather up my Shed things and then close up the Shed before refilling the hog’s food dish. A quick trip to the post box is followed by my hanging my washing up on the airer and retrieve the garden camera. I review the camera captures and copy then to the compute file Hedgehog 19. By now it’s time for tea and football, which goes to plan until my eldest daughter reminds me that I promised to take her to her circus skills session tonight. I am about to grumble but she bribes me with fruit pastilles so I comply and take her. Back home I watch football until everyone else goes to bed. I draft the blog, set the dishwasher going and extract my blood form from my files. Tomorrow is a blood test day so I shall be up early to trot down to the GP surgery to have the blood taken. So I will spend tomorrow night waiting for midnight to see if my blood results have been posted. This is in preparation for my next cancer review on Tuesday. It’s a time of anxiety so I will try to keep myself occupied.

Wednesday, third day of the conference. It is a good day, full of excellent presentations and thoughtful discussions. I am left very tired but pleased that I am now stronger in managing the reality of my situation than I was at the last conference. At the last conference I came to the end of the conference in a distressed state thinking I would not see the people there again. This time it was not an issue. I am driven home, for which I am very grateful, and get home tired and drained. I unpack, eat, watch football and the last Doc Martin. Finally, I take my night meds and draft the blog. Of course, my day has been much fuller and stimulating than the above indicates but I am far to spent to elaborate.

Tuesday and I wake in a strange bed with unfamiliar sounds around me. I am of course at conference, so it’s time to get up and find breakfast. I manage this successfully and get into the conference room in time for the first keynote speaker. From that moment the day did not stop except for food, coffee and toilet visits. I took a few minutes out to cancel my professional insurance that was due on the 1st of December. The conference dinner was brief really and was followed by the communal poetry reading and entertainment. I performed two of my poems and was applauded, but in fairness everyone was. At 10 o’clock most people went to the pub but I retreated to my room to draft the blog, pack and get some sleep. There have been ups and downs during the day. Somebody, a person who in my mind will be for ever “pony woman” gave a really good presentation on the way horses interact therapeutically with difficult children. There were some boring history bits but generally it was stimulating and of course there was a group crisis when the only black woman walked out of the group with no explanation. I am glad I am here; I think I’ve coped quite well with it, and it’s been nice to be reminded of some of the things that made it possible for me to do what I’ve done in therapeutic communities. By the end of tomorrow I will have had enough though.

Monday and I am up early as I am off to a therapeutic community conference in Birmingham. It’s just 7 o’clock and I am in the shower before an early breakfast. Plain muesli and fresh coffee, keeping it simple as I am to be car passenger today. My bags are ready to go along with my emergency food, just in case. A friend picks me up about 8:45 and we drive to the Woodbrooke Conference centre. We arrive just as the Greek contingent arrive and queue up to get our ID badges and room keys.

The conference starts and I settle into my TC mode. There are some familiar faces here that welcome me, it is comforting. There are interesting presentations and being a therapeutic community conference there are small reflection groups and “big” community meetings. By the time dinner comes around I’m tired and have a lot to reflect on. I take myself off to the quiet room with a coffee where I sit with 26 empty chairs and reflect upon the content of the last community meeting. I chat to the chairs (not out loud obviously, that would be weird, or so the pixies tell me), and think about the issues around dialogue and silence. It’s an old teaser at these events. I sit for a long time wondering what the question would be that might help my thinking at which point the chairs suggested this; “What’s the difference between a chair and a chair with a silent person sat in it?” Struck me as a good question (perhaps I am too easily pleased with myself). After staring at my 26 new chums (11 without arms and 15 with arms) I finally decided that my answer would be, “I can no longer see the chair.”

Time to finish my coffee, retreat to my room, listen to Diwali fireworks and draft the blog. I’m out of spoons so I will make one more drink, take my meds, set my alarm and go to bed.

Saturday and its excitement day as we, my partner, eldest daughter and I are off to Birmingham to see Cirque Du Soleil. We breakfast and I check the train tickets. By about 9:45 we are ready to leave so I summon up an Uber to take us to the station. The Uber driver had an interesting approach to speed limits, he ignored them. We arrived at the station with time to spare and while away on the platform. We had discovered that although I had ordered the tickets together and asked for reserved seats, the seats allotted us were not together, clearly too difficult. Anyway, we found our seats and settled into the journey and experienced the “being packed in like sardines” experience. We eventually arrive at Birmingham New Street and find our way to the world.

We walk through the centre of the Bull ring and find our way to the canal path that takes us to the Utilita Areana. We have hours to kill before the performance, so we dive into the Cosy Club to have lunch. It looks plush and we settle in and order. My choice, a dirty chicken burger was a mistake, not good. What is noticeable is the reduced quality of the Cosy Club menu, it is much poorer than it was. No more ham hock hash for example. So, it looks posh but doesn’t live up to the look.

I cannot move on without pointing out that in their wisdom the owners of Cosy Club seem to think that those of us using the “gentleman’s” toilet do so wishing to be observed by a bevy of young debutantes from the pages of Country Life! Not only do they overlook the urinals, but they sneak into the stalls as well. I present a couple of examples and hope that Cosy Club have paid the royalties due and have consent.

Having whiled away enough time we move on to the Utilita Arena. We get through the security and take our seats, discovering that the start time is half an hour before the time printed on the tickets. There is of course no filming or taking pictures of the performance, but I did snap the drop curtain.

The show is just excellent and full of real theatre and some touches of absolute brilliance. There is a twenty-minute break before the fun continues. The second half is also excellent. I am enthralled by the musicians especially the guitarist that also plays accordion, the whole musical backdrop to the stage performance is amazing. The end comes too soon for me. We leave and walk back by the canals until we pick up a taxi to the station. The journey back is less crowded and when we pull into home we hop into a taxi after stocking up with chocolate goodies. Home and I feed the hedgehog before settling down to eat the chocolate and watch football. I go to bed tired by the travels of the day and very much peopled out.

Sunday and I am up early to watch the England rugby team thrash their latest opposition in the women’s world cup. I go back to bed and wake again at about 10:30. I set about trying to mend or stabilise my collapsed plastic greenhouse.

I get the tools away, my new plants under cover and then indulge in a bacon sandwich. The Sunday call to our youngest daughter gets made late but we arrange to visit her in November. My afternoon is full of rugby, league and union, and then I pack for the conference I am going to for the next three days. Always a problem to decide on which image and wardrobe to choose, but I decide on an ice hockey jersey-based look draped in a long black cardigan. As the conference is going to be at a Quaker conference centre, I decide I need to take survival rations. I take a walk down to my local Co-op and stock up on chocolate, wine gums and other “can’t live without” items. I pack my “technology backpack” which in effect is my traveling office and run through my pack and to do list. Tea follows along with Dr Who and a Strictly catch up. My final tasks of the evening are to feed the hedgehog, clear the kitchen and put the final touches to my packing. Of course, I draft the blog not sure if it will be possible over the next couple of days, but I hope to be able to post something. I shall go to bed nervous about the coming conference but just hope I am able to juggle my spoons, yesterday took quite a lot out of me and I think I shall need to keep a sensible pace for the next three days.