Yes another day of rugby, both on the TV and at a live match. Today it was Wales falling gallantly to South Africa. This time we sat with coffee on the sofa wrapped in dressing gowns and PJs until half time when we became all action. Fifteen minutes to rustle up the desired bacon sandwiches and more coffee. We completed the task well and were in time for the second half kick off clutching juicy sandwiches and feeling pleased with ourselves. I was so pleased with life, tucked up in comfort with family around me that I forgot to take my drugs until the end of the match. At midday my youngest daughter bid farewell to drive home but not before we had loaded her up with pie and pastries to take back with her. I pottered for a while, including sending an e-mail to my old rugby club, Grasshoppers, with a photo of original rugby shirt circa 1964. I discovered that they still existed when I googled them after a conversation about my playing days when on a visit to Kew Gardens, which is just down the road from the Dysart Arms that used to be the original home of the rugby club. I ‘m not sure why I e-mailed except that I thought they might want an original jersey if they keep a record of their history. On their web site they seemed to be quite into their history. I will wait and see if anyone replies. I noted that the shirt was a size 38 chest, not a size I could get into anymore.
Original Grasshopper shirt 1964-8
During the process of waving my daughter off, I and my partner both noticed our daughters jacket and remarked on how good it looked. Of course we asked where it came from. Cyberdog was the answer. So another part of my pottering was to visit the Cyberdog website and WOW! The vast majority of the clothes would, if worn by me, give cause to question my capacity in way shape or form to make a sensible decision, however the T shirts are a different story. I impulse bought a couple of T shirts with the intention of wearing them to the next conference I go to, which will be soon. Having pottered it was time to get ready to go and watch the Leicester Tigers play. Thermal base layer on, wooly hat stowed, provisions wrapped and seating cushions stowed we set off for the game. By the time we got to the ground and got to our seats it was beginning to get a chill in the air. I should point out that the term “seat” is a loose term in this context. We actually sit on a bench with lines and numbers painted on it. Hence the seat cushions as said benches can be cold and hard on the arse in the depths of winter. The game against Saracens was dissappointing, Tigers lost in a fashion that suggests they may well loose a lot this season. In their defense six of the team are with the England world cup squad, however that does not excuse the players on the day appearing to wander around like school boys chasing a pigeon in the playground. To top it off, a Tiger’s player managed to drop the ball which would have at least given them a losers bonus point with the last play of the match. We drove home wondering it was really worth the effort. I think it must be the nearest I can get to how it feels to be a Manchester United supporter right now. So home to a good pork one pot and rice and David Attenborough telling us via a new wild life programme that we are all doomed. At this point I serviced the gas fire, well you never know. Then on to the blog. Tomorrow brings a 21 day injection and blood test booking. Always there is a little reminder that life is not, just life.
Last night I went to bed super early because I had work to go to today and all I seemed to do was hot flush all night. To such an extent that I ended up laying on a towel to soak me up! I do not know if it is where I am in the cycle of chemo or if my hormone striping injection on the 9th has kicked in with a vengeance, or whether its a combination of the injection, chemo and my self stabbing routine. If anyone out there knows please let me know or point me in the right direction. I feel like I could push pins into myself and it would make no difference.
IT FEELS LIKE STICKING PINS INTO MYSELF WOULD MAKE NO DIFFRENCE.
I can cope, more or less with the need to get up and empty my bladder on a pretty frequent basis. As a man who knows what retention is like, I know what is preferable in that department. However this hot flushing can be a really inconvenient and uncomfortable. This is the first night I have resorted to laying on a towel to avoid a soggy bed, and it is something I would rather not do. I have of course googled and searched but always come up with nothing for men and a load of implausible hogwash for women. I did find a nice flow chart, which, pun intended, seemed appropriate.
Well that’s that sorted then.
So I continue to clutch my pet cool pad and constantly adjust the sheets; sheets off, sheets on, sheets off, sheets on… and before I know it, its time for another piss. All this jiggling around just serves to confuse my Fitbit. Last night it told me I slept in two chunks with an hours break in between. As far as I recall I did nothing special at two o’clock in the morning. So by six forty five in the morning I am a sponge and need to get up to go to work. Its speed everything now, superfast fried egg sandwich and coffee, daily drugs and best of all, speed stabbing. Thankfully this is the last one in this cycle. So out the door sprayed with deodorant, no time for a shower, my car needs to move to let my partner get to work, and I am heading for Derby probation office. Although I had left in plenty of time the usual array of minor accidents and rush hour traffic delayed me. Even so I arrived before time and had a bit of a breather and organised my thoughts and prepared some information. People arrived and then I was into doing the business. When Shirley Temple was a small and precocious super star child her mother would wait at the side of the stage with her. As it came time for Shirley to step out and entertain her mother would give her a bit of a push and whisper to her “Sparkle Shirley”. I’ve told people that story so many times that when they know I’m doing a day or a presentation they WhatsApp me with a quick “Sparkle Shirley”. It helps, I go out and try my best to sparkle. Today I more glimmered than sparkled I think, but it seemed to be enough. I came away with a sense of having done some good work and some practical things to do that would support the work of the teams. I drove home, abandoned the car and walked to the village café for a baguette and coffee. My eldest daughter joined me, having finished work and let me buy her a piece of chocolate orange cake. Having indulged, it was home and heads down to do the tasks I had picked up from the day. Lots of e-mails and feeding back to colleagues some of the issues alongside checking where information was. There was of course the expenses claim to complete and the check of the diary to ensure all my ducks were in a row
An evening of dinner and blogging with intermittent hot flushes. This is definitely the season for them, and I expect I will have a tricky night again tonight. I guess I will tough it out and hope that as this cycle moves on that they diminish. Its a dilemma. If it means that my hormone level is dropping, which means my cancer is being starved, then it will hopefully mean my PSA will drop or remain stably low This is my crucial marker, so I guess getting sweaty is a small price to pay for a decreasing PSA level.
Tomorrow I am up early to take the Wolf to the garage to have a new radio ariel fitted. At long last the Susuki trolls in Germany managed to make one and get it to England. We will see tomorrow if my garage can fit it quickly. It would be nice to have a choice of listening. As much as I like Bob Marley I am beginning to crave other music on my journeys. So hopefully I shall be a little less grumpy and more happy.
So I am off to bed, perchance to sweat, perchance to dream, perchance to sleep.
I woke this morning with a lot of thoughts about people who had died in my life. Not surprising given my situation, it does tend to focus the attention on such issues. I note from my Fitbit that I REM (Dream) slept for an 1 hour and twenty one minutes last night which is a lot for me. The prompt for all this was my unexpected reaction to a TV show, Juvenile Delinquents. Two very misfit adolescents, rude, crude and hopelessly inept in there attempts at relationship but having hearts in the right place, if nothing else. They reminded me of many of the borstal boys and young offenders I worked with years ago. The central theme of the show was the reaction of all the characters to death. On the anniversary of his mothers death one of the adolescents and has friend try to spend a day with two girls, trying to impress them in ways doomed to failure. It wasn’t until they all end up at singing “I can’t live with you or without you” at the grave side do they make any meaningful contact. In the background was the drunken widower visiting the grave and retreating to drink with a photo of his dead wife. His son covers him up to sleep at the end of the show. In the midst of this was a dying orca, mother of a pod. The upshot amidst all this was a sense of people finding each other and discovering for themselves what was truly important to them in others. Just the sort of thing that gets to me and opens some of the doors that I keep firmly locked away, unless I am in a safe enough space to take a peek inside. So I guess my dreams carried on the process and lead me to wake with a head full of dead people who I continued to think about as I gratefully ate my bacon sandwich and drank my first coffee of the day brought to me by my partner.
Time to get up and banish the dead for prosaic things like haveing a shower and saying hello to the new toothbrush and the oral hygiene team. Meet the team:
The Hygene Team
The new toothbrush is of course another baby brush as recommendd by the care team, and is now always followed by the rugged Listerine mouthwash. The ck one is my major partnern in warding off fears that I smell due to too many hot sweats, whereas the Cutan Complete assures me after every hand wash that I am for a moment sanitised. I seem to be getting through the mouthwash very quickly andn suspect others are using it. Fact of paranoia? No idea but hopefully paranioa, as fact would mean my compromosed immune system was being further compromised.
Having cleansed and groomed I of course take the opportunity to hop on the scales naked to see how much I actually weight. Not a pretty site, as due to the loss of hormone and eating too much is resulting in a rapid weight increase. After today, I always eat sweets juring and just after chemo to raise my suger level in response to my body having a bit of a shock with the cannula and the drug input, there will be no more sweets and buns. Its fruit and yogurts for me.
Too few hormones and too many sweet things
We set off early for the hospital and on the way I check a WhatsApp from my nephews fiance who is now very happy with having an interview with the BBC to be a traffic annoncer and has also been offered and interview for a salaried post doing what she is doing on a zero hours contract. So today the sunshone for her. When I checked my e-mails I found one from the insurance company with whom we have been at loggerheads with since my illness in Jamaica agreeing to pay 86% of hotel medical and ambulance bills. So the sun shone for us too. All good results until we realised that we had been sitting outside the hospital car park staring at a car park FULL sign for ages and at the same time watching cars regularly leaving the car park. Eventually a bloke wanders out and raises the barrier. So once again we have to trudge off to the car parking office to sort out or payment card. Another irritating start to a chemo session.
I hand in my appointment card and we go and sit in the waiting area having loaded up with drinks and sweets and of course partake of a preemptive visit to the facilities. We waited until my Fitbit told me I needed to get my 250 steps in, at which pont I ambled up and down the corridor till I had completed my steps. I sat down and was soon having a hot flush. I’ve got this sussed now, I just “man fan” till I feel comfortable.
Man Fan and be damned
I’m called in and guided to chair 14 and set up my table with all my goodies and a book to read. The now usual questions about who I am, when was I born, any allergies, have I had my steroids are all answered satisfactorily and we got on with the cannula. I select my right hand thinking it will end up in my left hand anyway given the last two experiences of multiple tries at getting it in. Bingo, first time! What a relief, I will end up with just one fluffy cloud taped to me today.
Yea first time!
We settle down to read and eat M&Ms. Half way through I get my visitor, a friend of one of my nephews wife who is completing her chemo tomorrow and has been reading my blog. We chat about chemo and our mutual friends. She gives me a present that her mother has made. She makes them for alsorts of people as encouragement and support, so I now have my own angel. My new friend gives me a link to an App she uses and I promised to put it on my Blog for others to access. Its called Belong. Life. Just click on the following link; https://belong.life/ Her husband arrive to collect her and we said our goodbyes and promised to stay in touch.
Inside the following message:” Keep the Angel close to you and when you see Her you will know that someone is thinking and praying for you.”
I settled back down to reading my book, Goethe’s Faust, inspired by my oncologist, ” he who made a pact with the devil”. My version is an 1889 edition of the play which I remember reading a long time ago and was surprised by some of the things I had forgotten. I did find one bit in the prelude on the stage between the Manager, the Poet and Merry Andrew when discussing putting on the play that spoke to me. The Manager says:
What’s left undone today, Tomorrow will not do.
Waste not a day in vain digression:
With resolute , courageous trust
Seize every possible impression,
And make it firmly your possession;
You’ll then work on, because you must.
The Manager ,Prelude. Goethe’s Faust
This fits in with my ideas of keeping a direction and continuing to make a contribution while I can with some sort of urgency as I have no time to waste. It prods me to look to my own projects and to complete some of my own writing. The folowing scene, the Prologue in Heaven reminded me that in this play it is God who engages Mestistopheles to corupt Faust for a moral bet, which to my mind makes him a bit of a bastard! But it is only a play after all. Still the audience always boos Pinkerton at the end of Madame Butterfly and that is after all only an opera! I have digressed. But the time of this chemo session has gone quickly and without a hitch, so it has been a good session. I am unhooked from my poison bag and saline and leave clutching my drugs and of course a new set of five self stab sticks. That joy is to come, but not today.
We leave and head for the Cosy Club and a decent lunch. I always like to eat and drink quuickly after chemo. I think I want to indulge before the poison start to get to me. It also starts the process of getting enough liquid down me to flush me through. We head home where my partner continues to work from home via the magic of IT and I head out to Sainsburys. My mission is to buy printer cartridges, Yacolt yogurts, a birthday card for my grandson and collect Swedish Krona. Sainsbury’s have stopped selling printer cartridges and filled the shelves, in fact a lot of shelves with crap plastic, made in china, toys. I assume the looming profit of Christmas is involved but clearly whatever it is there is no green thought around. No thoughts of energy conservation, increasing non bio degradable plastics, and the sheer hideousness of plastic. What is worse if that the Swedish Krona are not there to go in the birthday card I buy. There is going to be a longer delay than anticipated. I shall have to confess in a WhatsApp soon. I leave and go to Pets are Us, or something like that, opposite Sainsbury’s in search of oxygenating pond plants. They have tanks with fish in and there they are swimming around the odd plant but not what I need. What does catch my eye is the rows of shelves of crap plastic plants with no oxygenating properties whatsoever, incapable of supporting insect life and making no contribution to any form of echo system fit for pond life beyond choking it with its indigestibility. I go home and get ready for the gym. Tonight I cross trained away 770 calories and stretch out my back and slightly painful side, whilst downing a litre of fluids.
Home to watch the great british bake off and to eat before starting on the blog. In the middle of doing this my internet went down. All I got was a message that my hub manager could not sort the problem and to ring the help line, I should expect to spend twenty minutes. I got through to a nice guy who reassured me all would be well soon, and it was, within five minutes I had my merry blue light back and I was back to my blog. Nice one BT, I am impressed. I’m tired now, its past 12:30 and I think the day is catching up with me so I am off to bed, hoping that this has not become too dyslexic.
Sometimes the early morning bacon sandwich and coffee makes me think of odd things and the rocking turtle I’d seen on LinkedIn came to mind this morning. With it came the Bee Gees classic circa 1977, which reminds me of how long my hair was at the time. Ironic that only one of them now survives and did the legend spot at Glastonbury. Equally sad that my hair will never be that long again.
This really is a diversion from the fact that I’m off to see the oncologist, “he who made the pact with the devil”, this morning. I am feeling quite okay about it actually as I am quite content with them apart from my platelet count. So we set out really early and because we expect bad traffic at this time in the morning. As it turns out there is very little on the roads and we realise that its half term. No urban tractors dropping off the millions of mortality projects at various conditioning units across town. It strikes me that it is a real waste of time. Just home school the lot. Think of the green saving, all that pollution that would not happen, free road infrastructure, lower accident rates and saved travel time. As a family of dyslexics, partner excluded, we achieved what we have despite the crap education system not because of it. I spotted this the other day:
Believe me this hasn’t changed in a generation.
Just a favourite hobby horse of mine. The fact that I have now downloaded a Plugin spell checker to this system suggests that there are still some areas that do to make reasonable adjustments for it. I hope fellow dyslexics find there ways to overcome their particular version of it. Personally I now regard it as an enhancement as the things that come with for me are really helpful, always have been if I let them, but sometimes did not recognise it at the time. I could always visualise and be creative, however that did not help with the consequences of not being able to read at fourteen and have illegible hand writing. In my time at school I and my fellow dyslexics did raffia at the back of the class, if we were there, or went out nicking stuff or trying our luck in the bookies.
I digress. We arrived at the hospital car park to find the barrier was up and a message taped to it telling everyone to immediately go to the car parking office to get a timed ticket. Mass confusion as people wandered around trying to find the office and get a ticket, then wander off to whatever part of the hospital they were actually meant to be going to. As a man who is “Ah Ah Ah, Stayin Alive” it was okay but I think for some it was an unwanted diversion and stress they could have done without. If it was broken then leave it open and don’t charge anyone. It would provide an incentive to get it fixed quickly and be compassionate and kind to the people coming to the hospital.
We arrived at the oncology department really early, checked in and wandered off for a coffee. I spent time scribbling notes for the session, however to our surprise we were called twenty minutes early. Result! We went in and found “he who has made a pact with the devil” in a good and smiley mood. I wondered if he had read his reviews but it dawned on me that I might be the first one in and as I am doing okay I’m not a “difficult” patient to have. I guess after a day of telling people they are going to die, or that they are going to die sooner, or that they are not well enough to continue chemo, the smile and cheeriness is difficult to maintain. I wonder how he protects himself from the emotional wear and tear of it all. I think he just wraps himself in the professional blanket and keeps on. Anyway all is good, my concern over the lowered platelet level is a result of the chemo and in normal bounds for the chemo experience, given my blood was done 5 days before the next cycle starts. My partner asked some questions and I asked about the slight numbness in my finger tips. It is only slight but he noted it and said the danger was that it got worse and became permanent. I note incidentally that the spell check plug in has stopped working. I.T. is never straight forward. Jane Street Porter got sacked as Director of Channel 5 before it reached air, when asked why she thought that was her reply was, “They told me the IT would work and it fucking didn’t!” Hospital barriers, spell checkers, the list goes on. I use Janet’s experience as a touchstone of my approach to IT.
I collect a new appointment on the way out and we head for home. My partner goes to work and I get the Wolf out of the garage and put the Beast back in. The Wolf is my toy, its an old 03 Suzuki Jimny, bright red convertible, which converts to a four wheel drive and HD by the use of a mechanical lever next to the gear stick. We keep it because in winter it skips through snow and ice with relative ease. Its more of a rescue Wolf really as the previous owners clearly abused it and it took several visits to the garage to get it well, but now its in fine fettle.
The Wolf.Little Red Riding Hood was more apt but too long, hence the Wolf.
I set off to the garden centre to get food and pond oxygenating plants. All goes well, I indulge in a cheese toastie, comes with crisps, which I eat disregarding my diet, and deal with my enabling environment e-mails (sometimes the IT does work) and set off to fulfil my “to get” list. No pond plants to be had, chicken pie, sausages rolls, sausages, strawberries and root vegetables are all in abundance and easy to get but where did the WierdFish hooded fleece come from? I really should not be let out on my own, but I guess I could not resist and there is a bit of me that thinks “why not…”
Impulse buy, but cuddly.
This is not the end, by the time I got out of the garden centre I had ordered pond plants from Amazon and a swing seat cover for the winter. Worse was to come. Once home I checked e-mails, sorted a load of washing, put tumble dryer on and then set about booking treats for 2020. Two shows later I stop and think I had better do the blog. So here we are coming up to dinner time and England are on the television tonight. It will be a diversion from thinking about starting cycle three tomorrow and saying farewell to cycle two’s toothbrush. I am already wondering how many goes it will take the team to get the cannula in my hand. However a new found friend via the blog is going to come and see me after she has her last session with her oncologist in her last cycle. There are always new things and new people to explore, which is always an opportunity to learn new ways of seeing and understanding the universe.
For those that wondered what happened to my waterboard mole hill and trench, the above pictures are of what is left. A new mains water stopcock and a neat trench scar to show where they renewed the pipe to the street main. I can now sleep peacefully in my bed knowing that if a pipe bursts I can at least turn the water off.
So I woke this morning with a niggly headache. The sort of headache that only warrants one paracetamol, not the sort of headache that just makes you want to destroy the world or act out your favourite Rocket fantasy!
That Rocket headache that makes you want to destroy the world!
Having dealt with the niggly headache I down a bacon sandwich and coffee and march off to the GP to have my bloods taken. Once again I have barely booked in than I am called. This nurse, not my 21 day injection nurse, is also very good and has the needle in my arm in a trice. A couple of dextrious flips of the syringes and I am done. I do as I am told and apply pressure to the fluffy white cottton cloud on my arm while the nurse labels my blood and tapes my cloud to my arm. Now I will wait till I can see my results over the internet and be anxious as to whether my PSA level is up or down.
My fluffy white cloud taped to my arm for safe keeping.
I pack my bags ready for London and Kew Gardens,which I am excited about, however I realise that I have to fill my drugs wallet for the week to come. I count pills into small cubes of gayly coloured plastic noting that Monday will bring “he who has made a pact with the devil” closer and the start of cycyle 3, which of course means block doses of steriods followed by five days of self stabbing. Best not to get ahead of myself and focus on something useful like making sure my camera is ready for tonights illuminated glass art exhibition. Expect lots of pictures later on and in tomorows blog.
My weekly chore, my rainbow of drugs.
We pack the car and head for London, stopping once for a comfort break and a gratutious bacon roll, before arriving at our Premier Inn just across the way from Kew Gardens. We book an early dinner and retire to rest before this evenings outing. I set to on the blog and have to up grade my wifi in order to upload pictures, so as I said earlier, expect a lot of pictures soon.
Just returned from Kew Gardens and our walk through the illuminated glass art sculptures. I’m tired so I am not going to say much just show you some of the beautiful things we saw. Sometimes words are useless and this art work proves it.
Today was the last day of cycle one of my chemotherapy, One down five to go. Tomorrow I start cycle two with the blessing of my oncologist who we visited today. The man who made a pact with the devil looked at my CT scan and showed me how I have cancerous spots in my lymph system, nothing ping pong ball or cricket ball size but nevertheless sitting there inside me being threatening. He also showed me once again the bone scan with its nasty black patches on my spine in three places, I find these more macarbre as it brings to mind an old advert for spine health that stated “If this goes the lot goes”. Not a pleasant thought.
We also had a chat about hot flushes. He listened kindly and offered the suggestion of Primrose oil. In my head I thought, “Stuff that I’ve read the research, it is no better than a placebo”, but nobody likes a swot and a know all so I said “Its okay so far its manageable.” I said I woke a couple of times a night in a sweat and he continued “we can always give you fluoxitene, ” I think “the fuck you will that’s an anitdepressant, I’m not having that shit in me,” and say “I would like to avoid that as I do not want to put anymore in my body than I need. Like I say, so far they (the hot flushes) are manageable.” End of conversation. After all I had sat in his stuffy waiting areas faning myself with my black silk fan and getting the usual weirdo looks from fellow cancer club members. If I can do that hot flushes are the least of my worries.
The meat of the conversation was around me trying to get some sort of timetable for my mortality. I had spent time looking at prostate prediction tools and aids to prognosis. I had also been looking at survival curves. I had a crack at the nhs prostate predictor. I put in my details and some of the figures I have for me. I got to my Gleason score of 9 and it politley told me the tool was not for those with metastatic prostate cancer. No joy there. I explained to he who had formed a pact with the devil that in my head it was like a satnav prediction of a journey. My satnav gives me an expected arrival time and being a bloke I try to get there earlier. With my cancer I want some sort of death arrival time that I can then be late for. It helps me plan and prioritise my life, balance my effort and undertake the most meaningful things in my life. He nodded and then we got into the “it is a difficult thing to predict, no two cases are the same.” type of conversation. I had already read that 30% of men with a Gleason score of 7 do not make it to five years. Mine is 9. We went back and forth but all he could really say was that when my cancer returns (it aways fucking does) the only thing they can say is that the chemo will give me about 12 to 18 months more, I reckon that’s eight months. We will see, no escaping the empirical data on this one, but either way I won’t be a round to say I told you so. So the game has changed, its all about how long the hormone depletion therapy works. As long as the PSA score goes down and stays down I’m winning. If it goes up I’m in trouble. I will keep you all posted. All the time we talked my partner listened and helpful clarified some things that I missed or did not get right. The specialist nurse, who had done my care plan sat in too and nodded at the right times and I think tried to be supportive. So there we all were metaphorially looking down my trousers and guessing how long…
“metaphorially looking down my trousers and guessing how long…”
The time came to an end and as a parting gift I was presented with what is in effect my “go to cycle two pass”. It comes as a blood test specimen envelope with instruction as to what is to be tested before I see the oncologist at the end of the coming cycle in order for him to declare me fit for poisioning. For those interested, my next one is below with an explanation for those curious about what the abbreviations means.
the blood test pass
the test abbreviation
So its home time, lunch and as my partner goes back to work I start the preparation for cycle two. In truth there is not much to do apart from turn up tomorrow, but I check the paper work, make sure I take my second block dose of steriods in the afternoon. They suggest this because apparently it “wires” some people and they do not sleep. Me, not a thing, I sleep, I hot flush, I wake up, I go for a pee, I sleep and so on. To date nothing else. Except that my Fitbit tells me that I am having more deep sleep and REM since being on chemo. Prior to chemo I used to have regular nights with out either deep or REM sleep. I was going 5 or six nights without either but now I get nightly doses of both.
There is one thing that I will do as a result of my pre chemo course. It was very clear that a soft toothbrush was recommended. Baby ones were said to be good and that they should be changed for each cycle. So when I finnish here tonight I shall brush my teeth for the last time with my faithful baby Cycle 1 toothbrush and ruthlessly discard it for a new one. Cycle 2 will start with more steriods and a new toothbrush.
Goodbye faithful Cycle 1 toothbrush.
Today is the autumn equinox
As I come to the end of a chemo cycle so the autumn equinox arrives. That time of equal day and night. A sort of fifty fifty situation, one that feels very like mine at the moment. It is a reminder that in this process the balance is always changeing and it is the rare moments that a true balance exists. It is the struggle to maintain mental and personal balance within this usually out of balance environment that takes the energy and the reflective effort to keep ones direction. When balance comes it is a moment to savour and for me provides sancuary from the ever changeing nature of the real world.
Nature just doing it
Humans trying to explain it
Time to go and say farewell to toothbrush Cycle 1. To sleep,to keep direction and to believe that impossible things can be.
Today is about direction, as it is the penultimate day of chemotherapy cycle one, and the day before I see my oncologist again. The course that is plotted is for six cycles but each one has to be approved before I can embark on it. Tomorrow my oncologist will wave me on or defer me till I am poisonable again. As I have access to my blood test results I know with a good degree of certainty that he will wave me through, my touch of chemo mange being par for the course. My PSA is down to 3.6 which is a further drop, my kidneys are functioning normaly and my platelet count and hemoglobin levels are in the normal range. So I reckon I’m fit enough to go the next cycle.
It is also about direction in another sense today. One of my nephews visited today with his wife and four year old son. Having a small person in the house and in the garden full of energy and curioisity reminded me that there is a direction that is always moving forward, where the young are developing and learning about a world that is new to them but all too familiar to me. That impetus to explore and to grow, thrive and learn is a delight to witness and to dip into. Playing crabby crabs and buiding magnetic pictures was a great fun, as was zooming toy cars around the table top. It helps to keep things in perspective to experience the world of growing up and it is a timely reminder that its not all about me. I had a lovely time and he enjoyed the fact that we have a frog toilet seat in our downstairs toilet. We waved him good bye as he was due at a party later in the afternoon, all part of his busy social life and his parents Sunday.
In the background was the rugby world cup, England beating Samoa and various football matches but once we had waved our visitors off we headed for the gym. My own direction being to keep fit, push my weight down and make my body a place that cancer does not want to be and where the poison can work. It is illogical and does not stand up to much scrutiny but I act out of some strange belief that if my body is as fit as it can be then my chances of staying alive longer are better. Like a fish swimming north to fulfill its destiny because it is part of its being I keep heading in my direction. I’m interested to see what happens.
So tonight I cook, I do chemo admin for tomorrow and watch Peaky Blinders, I do after all have the Peaky Blinders cap to watch it in and cover my shedding head. Tomorrow I keep my direction.
An ordinary Saturday, apart from the Rugby World Cup starting at the crack of dawn on TV, to notice that the hair on my head is beginning to shed like my beard. I though that having had it cut down to 2 millimetres all over I might get away with it but I guess no one told my follicles what the plan was. More delusional stuff from me and another reminder that cancer does what cancer does and chemotherapy does what chemotherapy does.
First job of the day, fill the pill rainbow for the week
So today I sat and watched grown men play rugby at a speed and ferocity that is wonderous to behold. As a player long ago it is inspiring to see the levels that the game has reached and the athleticism that is required by the modern game. As fate would have it my new bamboo gym wear arrived at half time. It is one of my resolutions to train more often but in the comfort of light weight kit which helps cope with the hot flushes. By the time New Zealand had out played South Africa I had ordered additional light weight underwear to go with my new kit. Bright red of course, if I’m going to flog myself in the gym then I want to be easy to find as I fly off the end of the cross trainer or get pinned under an over ambitiously loaded weights bar.
Apart from new underwear I retreated to write letters to friends in the shed. I like the intimacy of letters and I like to receive them. There is something about the joy of receiving something that someone has sat down to and thought about, wanted to share and taken the trouble of putting pen to paper. Its something to savour, to drink coffee by and to nibble thoughtfully on a chocolate digestive. Its even better if this can be done in the shed in the garden to the sound of birds and insects going about their business. It also fills the time it takes for the washing to get done or for it to dry on the line.
So not an exciting day but a quiet one of some doing the ordinary. However I like the ordinary, someone once said that the generative power of the everyday should not be under rated or ignored. I agree with this. There is much in the mundane that is extraordinary, I just have to pay attention properly.
I’ve spent part of today trying to learn how to put audio and video into my blog but to date I have failed. I came close once or twice but could not get it to function reliably. I shall preserver but for now enjoy the link below, its one of my all time favourites.
Tomorrow I might have blood tests to share and the joys of being visited by one of my nephews and his family, I’m really looking forward to it, drinks and chocolate cake all round.
Today was to be a treat. A visit to the the Black Country Living Museum. It started well, car filled, tyres checked and then the satnav stuck its oar in! I knew I wanted to be on the M69 the satnav had other ideas. In the end I won, whoever holds the wheel will always win. We arrived, one packet of wine gums down and in need of coffee and food. Having got comfortable we began to tour the museum. At first the overwhelming impression was where did all these school children come from and where did all these old people come from? Not difficult to spot the the self blindness there then. Rather than talk you round the dark, coal dusted industrial environment in which we played “I remember my grandparents having that, doing this, smoking those” I’ve included a few photographs.
the pit
the engine house
the fly wheel
The canal side
forge by the canal
open forge at the canal
coal is everywhere
iron is everywhere
forges are everywhere
Not everything is industrial, there are shops to.
Of course there is a pub
and domestic life.
Time for coffee and the revelation
After a while we are ready for another cup of coffee and a snack so we wander over to the canal and tunnels society centre. Sitting on the balcony with a can of coke and jumbo sauceage roll I look out over the canal boats and the forges and remember that Peaky Blinders is partly filmed in this location. I am thoughtful and stroke my beard as I tend to do when I am roaming around in side my head and living in that grey world between being in the here and now and peeping into the unconscious that tends to surface now and then. I look at my hand and I am taken aback at the number of beard hairs that are on my hand. I stroke again and there again is a tuftette of hair. The more I stroke the more I become aware that I am losing my beard. Fuck. I thought I had got away with it, having had the number two on my head and not noticed any shedding I thought I had dodged the hair loss. My beard has let me down is my first thought, stupid, but there you go. Its the sense of dissappointment that gets to me. Another unwanted message of how real this cancer and chemotherapy is.
Of course the question is what do I do. Shave I hear you yell but like so many men my age my beard is not there by accident. As we men age we get the dreaded throat sag and so we respond by growing a beard to hide our turkey like necks. So its vanity and that denial of age that tells us that a beard is a good idea. After all it makes us look mature and manly when we know we are on the wane. So I shall not shave myself clean, I shall go for rugged stubble. At some point soon I shall emerge from the bathroom sporting as good as I can get groomed stubble. I will see how it goes, but if I end up looking like I have mange then clean shaven it will have to be.
With the moulting beard I had thoughts about whether the hair on my head would go soon. With winter coming that could be cold. My solution? I am now the proud owner of a heavy weave Peaky Blinders cap. Should look good with the biker jacket.
Tomorrow we are going to Pure Land a Budist meditation centre as it has a Zen garden which is well known. Perhaps I will have the opportunity to reflect upon my falling beard and the vanity it represents.
This stopcock should now be nestling above my currently dysfunctional one. Obviously it is not, due to the discovery that the water suppliers street stopcock is not functional. So having thrust his arm deep into the pavement to no avail my plumber waved me farewell advising me to ring the water supplier, whose responsibility it is to maintain the street stopcock. I, of course, did and in fairness they replied to their free phone number quickly. What was less inspiring was the fact that they cannot come until the 27th of September, a full ten days away. So no quick fix then. Fingers crossed that the pipes hold.
Hey ho! Off to Twycross Zoo
What is there to say about a zoo apart from saying the pictures were worth it.
I am still not sure about zoos. On the one hand there is the conservation work that they do with cooperative breeding programmes across Europe. On the other hand there was the solitary rhino and a couple of singular apes who looked bored and less than thriving. I know from the experience of going to the home of some of the big animals that given the opportunity and a full belly a lot of animals will just laze or sleep. Come to think of it so will I, so its not surprising that many zoo animals do. Having said that where and animal is a social animal being kept on its own seems perverse.
And where is cancer today?
If all goes well over the next week then this time next week I will have started cycle 2 of my chemo. Between now and then there is a blood test to do and an oncologist appointment to meet. I will not know until Monday whether my blood results will have held up well enough for me to enter into the next cycle. I also have to gamble and start my pre cycle block steriods before seeing the oncologist. All of this nags away at the backof my mind. The worst thing is that I know if I progress then I will have to begin to self inject again in about a weeks time. I hate that. I tell myself that I will get used to it, but I really do not want to get used to it. I do not want my body to become medically institutionalised. Its not normal to push a needle into yourself and push substances into it. It might keep me alive longer but its not normal.
My other issue that is nibbling away at me is that I do not know what my baseline for living was. I’ve done the research and think that chemo may give me another eight months beyond what I had, BUT I have no idea what I had. So what am I adding eight months to? My CT scan is suppossed to act as a baseline against which any progress I make can be compared. What I need is for my oncologist to be honest with me and give me an opinion of what my prospects were without this chemotherapy, so its eight months plus what? Some sort of timetable is what I need, as do those around me. It would be like having a target to beat, just like having a predicted arrival time on the satnav to beat on a journey. Of course the aim in this case would be to arrive as late as possible.
