Cracked it! I’ve achieved my first goal of being 92 kilos before my oncologist appointment on Tuesday. So I have earned my treat this week which will be 5 segments of a chocolate orange with dinner tonight.
So as today is a rest day I the complete the painting touch up in the kitchen, watch rugby, order a celebatory retro ice hockey jersey and T shirt from the Arizona Coyotes, chat to my youngest daughter on face time and cook a pork chop one pot for dinner. That is a lazy, celebratory, non training day of rest and recreation.
Tonight I write the blog, tweek the Tesco order and prepare to watch the Super Bowl. I could get addicted to days like this but tomorrow its back to being an adult and trying to be a reasonable rational adult; tricky with my crew of pixies looking after the cogs, wheels and levers in my head.
Of course the week brings the results of my scans, another wrestle with my oncologist and the prospect of being signed off from the DVT clinic on Thursday. So quiet a lot to come together and it will need to be processed. You will hear it first here.
Saturday and the first thought is to look at my blood results if they are in. I log on and sure enough there they are. I hate this moment as it can either be a time of reassurance or my worst nightmare. I always “batten down” and go through a ritual way of looking at them and then printing them out. Once that is done they get colour coded. I take a space to consider them and compare them to the last lot of results. Lastly I consider what questions they raise and will need to be answered by the oncologist. So here they are.
My latest results: about as good as they can get given my cancer.
Once processed I take tea to my partner and share them. There is a brief conversation and the its time for me to get moving. I load up my weekly pill wallet and take todays meds with coffee.Today I need to train first thing in order to be able to watch the rugby later. I get into my training gear and set off to the shed and the waiting exercise bike. So I get on the bike without breakfast and give it my best shot for an hour. The result was a personal best.
Time
Kilometres
Calories
An unexpected personal best.
I head for the bath and soak for a while. Hunger drives me out and I go for a breakfast smoothie and loads of water as the bike always dehydrates me. I get ready to watch the rugby international on TV. I nibble more food, cheese sticks, cheeese, soup and an apple. I put my washing in the machine and will retrieve it at a suitable break in this afternoons rugby. The rugby is okay but a little souless without a crowd. Having watched France thrash Italy there was a brief break before England took on Scotland and ultimatley lost. There is only one way to recover from this and that is to order an Indian takeaway for the evening meal. It arrived a couple of minutes after the fianl whistle was blown.
After demolishing the meal we sat down to watch the DIG. A gentle film full of nuances. Time to write the blog while watching the football highlights. Tomorrow is weigh in day. This weigh in is the last before my oncology appointment. The goal was to be at 92 Kilos by my appointment time. I look forward to the possibility of a rest day and a celebration treat.
Friday and it shoud be a day free of work and tasks but today is different. Today I have a blood test to give blood for and a one to one meeting with a colleague from work. So I am up and on my way out to the GP surgery early. Its the usual routine, arrive, ring reception to tell them I have arrived and then go and hang around at the back door. The nurse opens the door and ushers me into the clincial room where I slip out of my jacket and bare my arm for her to draw blood from my arm. These are the test results that I will get over the weekend prior to my oncology appointment on Tuesday. Blood safely in its sample vials I am escorted out of the back door.
Once home I have a bacon breakfast accompanied by coffee and drugs and settle down to review my to do list and emails. I find myself thinking about work and working out a timetable for the tasks in hand. Because of my afternoon commitments I work out I need to train in the morning while my partner and youngest daughter go for their daily walk. So I get into my training gear and head for the garage as this is a rowing day.
Kilometres
Time
A good session and heading towards my PB. I am getting fitter.
A good session and indicates that I am getting fitter as I lose my excess weight. I end up in front of my laptop screeen for a meeeting still in my training gear clutching a 7UP. The meeting turns out to be an interesting one and by the end of it I have a new meeting to go to on Monday with a colleague. It’s an interesting piece of work but one I cannot talk about. I also come away with a new client to contact and to start working with. So I am going to be busy for a while to come.
I bounce from one meeting to another to talk about training in the future. This meeting is always a pleasure as it means I can catch up with an old friend. As we chat I am invited to provide a couple of presentations in the coming months. This is a pleasant surprise and will provide me with a good diversion as it will make me have some thinking time about what I want to say. One of them is far enough off for it to be planned to be live in a yurt with no WiFi, which opens up alsorts of possibilites like interpretive dance!
Meeting over I head for the long awaited bath. Bath bombed of course I recline and listen to meditation music and enjoy the feel of the warmth of the water around me. A friend phones and we chat about work and the relief of getting to the weekend and having time to relax. We also chat about the intricacies of pocket money, take aways and other critical issues that make life worthwhile.
Time to dine and then an evening of some TV and writing the blog in spurts. As ever on blood vampire days I shall stay up till midnight when the blood results are posted on the App that lets me see them. It maybe that the PSA score will be delayed as it was last time. Tomorrow is internatioal rugby, training and some light research of the new client and reading some briefing papers for Mondays meetings. Today has some real highlights in it. One was part of a conversation I had about the music I plan for my funereal but we got onto the celebration part of the day and pretty soon we got to the party bag contents. I am truly gripped by the idea of creating party bags to be given out at the end of my cremation ceremony. I realise this might feel a little insensitive but I think you have to find fun where you can these days.
I would add more but for technical reasons, like the website techno cannot handle PDF images I would show more pretty pictures. But I am one of 48.3 million who are stil alive within 5 years of being diagnosed. If we all held hands we would circle the earth.
So a brief breakfast and straight to the sofa to ready myself for a meeting at 10 o’clock. It was a difficult start as a colleague who had just heard her mother had been taken to A&E needed to leave. A difficult day for her. We remaining colleagues continued with the meeting. At the end of it I had time for a quick lunch before hosting my regular Open Forum. It was a session that painted a picture of growing risks for both workers and clients as the COVID pandemic contiues to sweep through services. It is like watching outbreaks poping up all over the place . It was described to be like the fair ground game of “wack a mole”.
My open forum came to an end and I quickly changed into my training gear and headed for the shed for an hour on the bike. A tough session but needed. When it gets tough I just remind myself that this is my medicine, its not a luxury, its a necessity.
Time
Kilometres
Calories
I head to the house and strip off quickly, grab a drink and settle in front of my laptop to attend a webinar. Its the Royal College of Psychiatrists Presidents lecture and is being given by someone I know. Overcoming Fear was the key tittle and reflected on how the work on group behaviour by monkeys has a link to human behaviour especially in how as a group we are dealing with COVID. There was a clear message that the nhs needs to be recognised to be in need of over haul and a focus on relationships reinstated. There was a final question section and then it was time for me to clear the kitchen. I had just got started when a friend rang and we had the chance to chat for a while. The calls are very welcome but we both miss the time when conversations were not constrained by time and could be those glorious rambling journeys that range over ideas, opions and curiosity for what makes meaning in the world. At the end I return to the kitchen to finish my clearing and to help with the evening meal. While my partner prepares for her weekly singing lesson I settle down to a football match until Murder in Paradise comes on the TV.
Once my evening entertainment is over I write the blog. Today has been a long day and one that feels full of emotion. The theme of distress and struggle seems to have been the major experience of the day. It underscores the struggle that is going on, not just the physical fears associated with COVID and all the tenticles that spread from it but also the emotional wrestling to make meaning out of the current situation. It is becoming increasingly difficult to create the space to slow down and to think reasonably and rationally and when there is there are an increasing fissures in the community to try to make sense of.
Tomorrow I am due to go for a blood test at the GP in readiness for my oncology appointment next Tuesday. It is that day when I should get to know how much my cancer has progressed. Two days later I will find out if I am going to be discharged from the DVT clinic, reasons to be cheerful. So I sit here drinking large amounts of water to counter the darkening of my urine post exercise and to ensure my bloods are as normal as possible in the morning. Exciting eh? Thats the reality of my World Cancer Day. However compared to many I am beyond fortunate, I am alive and loved, what more could I want?
Wednesday and I get up early to be told I had intruded into my partners space, her alone time, so I made coffee and found a quiet space to drink it until I heard the familar early office day chat going on. I get myself breakfast and check the work I’ve done prior to a work call.
Time comes around to dial in and join the meeting only to find one of the participants cannot use TEAMS so we all log out and come back in on ZOOM. During the call we found that when it comes to do the main work in a months time we will be on Family Size a platform we have never used, which has a screen maximum of 15 people. This paragraph would have been unintelligble a year ago, now it rolls of the frontal lobes with no trouble at all. The call goes well, I think, and we agree what is needed to be done before the review date early next month. I do some post meeting emails and notes to tidy things off and then think about what to do next.
A smoothie lunch and I settle down to listen to a webinar on “Psychological Safe Environments” given by a Dr B who claimed to be a doctor/psychiatrist turned organisational consultant. It lasted an hour. It was unremitingly dour, negative and and provided nothing on how to create a psychologically safe environement only the misery and dread of toxic stress. The presenter managed to boil the whole of psychoneurology down to the “green spot” and the “red spot” to refer to the amygdala and frontal lobe functions. It was a really clear example of patronising the audience. The trouble is that once you take the prescription pad away from a psychistrist they turn into amateur psychologist.
I change into my training kit and head for the garage and the rower for half an hour. My injection sight is still sore but easing so I tried to take an easy pace.
Not bad post jab
I head for a bath bomb bath and actually read for a few minutes as I listen to some relaxation music. I then slide towards an evening of football, food and a TV drama, The Bay, until I write the blog.
Suddenly I am tired of all this COVID crap, the distancing, the confinement and the stifling of being. I have a day of work to do and a training slot to fill tomorrow, but really the fish need cleaning, the garden tidying and letters to write.
Tuesday and I struggle to get out of bed after ten hours of broken sleep. I still feel sore but I have stoped shaking. Just to make the effort I put on trousers and T shirt (tucans) and go down to make an omllette and coffee. I am expecting to be in a one to one meeting but then one to my one to one emails me and cries off due to headache and nausea. I immediately think COVID, well you do don’t you but of course it could be a myriad of things from a night on the piss to bad prawns in the take away. Life and its little hiccups go on despite COVID. So after a few work emails I settle down to review the evidence that has been sent to me prior to a therapeutic community accreditation visit, virtual of course. I spend all morning reviewing evidence from a screen and matching up with several paper sheets to try and get a grip before tomorrows pre visit phone call.
At lunch time I go for a walk in the village with the family, I follow my partner and eldest daughter and listen to them rant. The rule is you can rant on the way out of the house but you have to not rant on the way home. Seems to work for them, I said nothing and surreptitiously slipped away to the post box to send a letter to a friend. Gods knows when it will get there as I got a message to say that a letter sent on the 16th of January has only just arrived.
I put the recycling bins out and contemplate changing into my training gear and rowing. As I get ready I am struck by how crap I feel and that rowing is probabley the last thing I need to be doing. I put on lounge pants and an ice hockey training top and retreat to the lounge for a bit more work and a french football match. I think about having another go at having a row but a friend calls and it is of course far more sensible to talk to a friend and do real world things. I return to the sofa and write a draft of the blog.
It’s an evening of football and Marcello and an edit of the blog. The news is basically a downer and I shall retreat to bed,a book and sleep.
Somewhere over the rainbow, new post office mail delivery policy
Monday, its stabbing day. I get up, gather the jab pack and drive to the GP. I phone in and go to the back door where I hang around till the nurse opens up for me. Its the right side for the jab this month , the worse side. This time it takes ages to get that stuff into me. As I loose weight and get lean the volume of drug feels like it gets bigger. Not a comfortable experience.
I get home and have breakfast and a coffee. I solve a delivery problem, send some emails and organise some tasks. I’m beggining to feel post jab aches so I head for the shed to write letters. I finish my writing and strip off to clamber on the bike and give it my best shot. Its a bloody hard hour as I can feel myself getting more sore but I know I’ve got this, the scales will judge me on Sunday, so I push on.
Time
Kilometres
Calories
Hard earned but this is my medcine
I get myself in doors and head for the bath. I feel shit and just bath bomb the bath and get into try and warm up because by now I’m doing the shakes like a two bit junkie. This is what happens to me now at jab time. I lay in the bath and realise I need to move the car so Tesco can deliver. It’s crap but I get out and dress and go and move the car. I get back inside and just sit on the sofa waiting for food, home made pizza and the Tesco to deliver. Pizza arrives courtesy the efforts of my partner and then just as I finished Tesco delivered. Burst of energy and we wave farewell to Tesco and I retreat again to the sofa to write the blog. I’m cold and shaky so I shall go to bed and try to get warm and stop shaking. As I’ve said it’s shit but I can sleep through this and be better in the morning. I’ve a letter to read and some preparation to do for a meeting tomorrow but I shall take my own advice and look after myself. Pain killers and a warm bed, this animal is curling up and stuff anything else. Tomorrow I will rise magnificent.
This is war, this is medcine, this is the rage that makes me make the effort for the people I love.
Sunday, weigh in day. A very disappointing 92.8 kilos, a rise of 0.5 kilos. It set the tone of the day. Apart from a walk with my partner to deliver a birthday gift to one of her friends who lived in the village I’ve done very little all day. A little preparation for an up coming TC accreditation review is about all I have done of any constructive nature. Refilling the soap dispensers has been my only domestic contribution. Apart from that I’ve watched sport and then suffered bloody David Attenborough telling us what shits humans are and how the planet is dying followed by a TV drama documenting the pain and aftermath of a woman being widowed and failing to manange to survive. With the joys of tomorrows monthly jab due I’ve just about had enough by the time I get to write the blog. Unlike Pink Floyd I am uncomfortabley numb, but the song is worth a listen anyway; turn the volume up!
Time to take up the compass and keep steady the direction.
Saturday and due to my tardiness in not training yesterday I need to get up and train straight away. So I get into my training gear and make my way to the shed to do an hour on the bike. A tough session but I glad I made the effort.
A tough but necassary session
A refreshing shower and a mid day breakfast set me up for the rest of the day. My partner and I took her mothers walker to the care home where her mother currently is, along with some flowers and biscuits. It was a passing visit as we of course were not allowed in. So close yet so far. On the way home we called into the local garden centre to get some food from the buthchers and the mini Sainsburys, so we are food viable for the weekend. Having got home there was time to watch the end of a football match, get my washing done and order tonights Indian takeaway. After that its time to watch the TV and wait for the meal to arrive. The evening sees the family eat and amuse themselves whilst ignoring the TV that chirped away like noisey wall paper in the background.
Tomorrow will bring joy or pain as I step on the scales for my weekly weigh in. If I am lucky I will get a rest day and a treat, which this week will be a winter pudding. Making the most of such moments is important as it is a small gain in a sea of loss. Lost holidays, lost time with friends, lost sense of security and loss of trust of others. It begins to feel like the pains of imprisonment.
The coming week is an injection week and already I feel aprehensive about it as this week it is a right side injection, always more sore. At the end of the week I have a blood test due all in preparation for my annual review with the oncologist. It is the one of the few times that I get factual information about how my cancer is or is not progressing. I wonder if I am about to enter another phase of “its as good as it gets” or whether I will need to find a new name for my blog. I shall know after Februay the 9th when I have my high noon telephone call from the oncologist. It will interesting to see what “he who made a pact with the devil” has to say.
Friday and I wake late, an egg and coffee breakfast before I settle down to do some preparation for a review I am doing in February. While I wade through imformation the post arrives and I get a lovely card from my friend and supervisor. It makes me smile and chimes in with some of the ways I feel at times during lockdown.
Sometimes it just feels the right thing to do .
By lunch time I am in my training gear but decide its ideal to wash and wax the cars in. So I spend a hour or so doing just that. It is a fact that when you finish washing and waxing a car it rains, so of course it did. I rang a friend to catch up with what was going on at one of my old places of work and to talk about the reality of working as a student mentor. It was a really useful conversation apart from being good to catch up.
I discuss with my partner when it would be best to pick up her mothers walker from her house. We decide to go today so that we can have the weekend free and not have to drive in the coming snow. I start to prepare a pork stew, for the evening meal when a friend calls and I have the pleasure of another call. She has just had the excellent news that all the families COVID tests have come back negative so some of the constraints can be loosened. I returned to preparing the evening meal so that I can stick in the oven while we go off to collect the walker. We drive off to collecect the walker, the round trip takes long we enough for the meal to cook.
Home with the prize we eat tea and settle down to watch Leicester Tigers get beaten by Sale. Another crap performance by a bunch of muscle monsters who seem to have little idea about rugby that does not include an endless kicking of the ball to the opposition in some mythical quest for yardage. I think it is defintely time to give up the season ticket and invest the money saved in some other indulgence like going to watch the local ice hockey team in Coventry.
Today I failed to get to the shed to train, my excuse is that I was overtaken by other things, but that’s not the case. So tomorrow I shall need to get myself in gear and do a longer session. I am desperate to get below 92 kilos this week at the weigh in on Sunday as Monday is an injection day and if it goes to recent form I shall feel crap for a couple of days afterwards.
