It is a hotel breakfast day, followed by a long meeting day and a drive home from the north day. It’s a take away Indian day and an early night day. It was a disappointment day for my eldest who did not get the job she went for. Their loss, she will take the positives and move on. There will be other days. It feels a sparse day because I think that is how I feel, sparse, emotionally. Tomorrow is another day.
Its a big day today as my eldest is going for a job interview. More than one reason for me to cross my fingers today. I am feeling quite lively as today I go north to prepare for a a meeting tomorrow in Leeds and I have fish tank repairs to do. So its out of bed for me, into the empty house and grab my meusli and yogurt breakfast before setting about my fish tank repairs. I realise once I start the process of replacing the water pumps that I have not got any piping for the replacements and the old tubes are not suitable. So its off to the garden centre with its fish shop to get the needed tubing. Once there I find what I want easily and I also find the butchers and buy sliced ham and turkey. These help my high protein diet as I snack on cold meats. I resist the temptation to visit the cafe and indulge in hot chocolate, there will be time for that later. Home and I find post that includes an appointmentn letter for “he who made a pact with the devil” , my oncologist, for the 24th of March. This means the “Fingers Crossed” stage has a definite end to it. I set about replacing the pumps, which goes quite smoothly. I decide that only one pump is required at this stage so I will monitor the state of the tank for a while and check that one is enough, but obvioiusly I think it is. The tank now runs blissfully quietly.
Once done I tidy away and check the routes I am going to be taking today and tomorrow and run off the directions. Although my car has a sat nav it can sometimes lead me astray so I always take my back up directions with me. Its proved to have been crucial on soem occasions. So I head north along a route a know well and arive at the hotel by the end of the afternoon missing the end of work rush and the darkness of evening. I get a message that says my daughter got the job and I send a congratulatory message only to recieve a meassage back from younger daughter to say it is she who has the new job. I had assumed it was my eldest who had sent the first message. So my youngest has moved up the career ladder of where she works and gained promotion. Proud father describes me. I will be unbearable if it goes so well for my eldest. Tonight I shall dine and then read Early Riser till I fall asleep, which in these circumstances tends to be quite rapid.
As I drove north I suddenly realised that I had forgotten I was going to die. I remembered that I had not completed typing up my poems, which was one of my must do projects on my things to do before I die list. A list that I had set about with some purpose once I had been diagnosed with cancer. It was almost as if I had slipped into my old self not expecting to die for years and bobbing along with a causual disregard for the possibilty of death. I suppose the ending of chemo and this period of just waiting and seeing had lulled me somewhat. So apart from doing my tax return pretty quickly and sealing the civil partnership, the typing up of my poems has returned to my priority list. I need to nudge myself occassionaly to do this and must make an effort to complete this project soon.
It’s Scan day.
Ezekiel connected dem dry bones
Ezekiel connected dem dry bones
Ezekiel connected dem dry bones
Now hear the word of the Scan Man
Well, your toe bone connected to your foot bone
Your foot bone connected to your heel bone
Your heel bone connected to your ankle bone
Your ankle bone connected to your leg bone
Your leg bone connected to your knee bone
Your knee bone connected to your thigh bone
Your thigh bone connected to your hip bone
Your hip bone connected to your back bone
Your back bone connected to your shoulder bone
Your shoulder bone connected to your neck bone
Your neck bone connected to your head bone
Now hear the word of the Scan Man
Dem bones, dem bones gonna walk around
Dem bones, dem bones, gonna walk around
Dem bones, dem bones, gonna walk around
Now hear the word of the Scan Man
Disconnect dem bones, dem dry bones
Disconnect dem bones, dem dry bones
Disconnect dem bones, dem dry bones
Now hear the word of the Scan Man
Well, your head bone connected from your neck bone,
Your neck bone connected from your shoulder bone,
Your shoulder bone connected from your back bone,
Your back bone connected from your hip bone,
Your hip bone connected from your thigh bone,
Your thigh bone connected from your knee bone,
Your knee bone connected from your leg bone,
Your leg bone connected from your ankle bone,
Your ankle bone connected from your heel bone
Your heel bone connected from your foot bone
Your foot bone connected from your toe bone,
Now hear the word of the Scan Man
Oh well, dem bones, dem bones, dem dry bones
Dem bones, dem bones, dem dry bones
Dem bones, dem bones, dem dry bones
Now hear the word of the Scan Man
Dem bones, dem bones, dem dry bones
Dem bones, dem bones, dem dry bones
Dem bones, dem bones, dem dry bones
Now hear the word of the Scan Man.
Well I doubted that this would be sung to me as the cameras whirred around me as I lay dead ridged on a slab in the depths of the nuclear medicine department at Glenfield hospital. I was right, all very professional.
First there was breakfast to do and the usual tidy round and feeding of the fish. It was calculating how long it would take me to get to the hospital, in theory quick and easy, and then there is the parking. I left ridiculously early having got bored with filing my chemo claws into something like a reasonable appearance. This was a good decision. As anticipated the actual “getting there” was easy and quick but I ended up on the back of a queue playing “joust for the space”. We circled like sharks sensitised to every reverse light flicker or rattle of car keys coming out of a pocket. Then out of the blue I got a break, a pair of full on reversing lights right next to me, instantly I backed up giving the driver behind a shock as he had to hurriedly back off himself. Out the little white car came and in I slide my shark finned sleek dark blue carriage. Yes this is my day. It was until I realised it was a pay and display car park and al I had was two pound coins which would only buy an hours parking. One thing the nhs could do is install parking facilities with contactless facilities. They are all the bloody same, living in the dark ages and taking the piss as none of them give change either. So I went off to find the change machine in the main reception area, where I find my only note is a £20. So I limp back to the parking ticket machine and get one that will cover me for long enough.
I find my way to the nuclear medicine department and check in. While I wait I fill in a form about surgical history, pain and something I forget. I note the sign opposite me telling me that in essence once I am radioactive they do not want me hanging around in reception. Friendly.
I am collected by a smiley nurse who takes me into a room and checks who I am and then gives me the pre cannula chat. Then its hunt the vein time. My veins are looking good but the first one just will not play. Obliviously I am needle resistant. She tries the next one across and this time there is success. Saline to flush thorough to start with and then she gets a solid metal box in which lurks a metal cased hypodermic. This is screwed in to my cannula and the magic radioactive dye is pumped into with a bit of saline mixer. Job done I am told to came back in two and one half hours to be scanned. So I wander off, disappointed that I am not glowing or acquiring any superpowers.
I meet my partner at the main reception café and we have lunch and chat about accreditation and award processes for different organisations until it’s time for her to return to work. I walk back to her work place car park and then return to the hospital. I get back to nuclear medicine and settle down in their waiting area and read “Early Riser”. I am fascinated from the very first paragraph and find myself happily reading oblivious of anything else.
As scan time approached I went for a pre-emptive piss, as this is always something scan people ask you to do. I got my timing just right as as soon as I returned to my book a chap came along and showed me to a changing room and presented me with a gown. I duly changed and sat in the changing room reading my book with just the gown, pants and socks on.
I got collected and shown into the scan room. There they checked I was me and then laid me out on the couch. I was left on my own while the technicians scuttled off to their room to drive the scan. I did what I always do when left alone horizontal on a slab, I dozed. No point in wasting the time if there is a chance for some sleep. In no time at all they were back saying they had finished and that I had to lay there and wait until the doctor was happy with the pictures so I was free to wriggle and move for a while, no chance I was back to dozing as soon as possible. Unfortunately the doctor was speedy in his/her assessment and did not need any more pictures so I was rudely roused and told I could go. I changed back into human clothes and wandered off.
Outside the hospital there was a fruit and vegetable stall. It seems all hospitals now have these, it’s a strange phenomena and I think it’s done in the vain hope that people, fat and unhealthy people, will have a Damascus moment and experience a revelatory hunger to consume plants and their fruits. I indulged in strawberries, lychees and cherries to supplement my protein and fruit diet. So this particular vegetable and fruit stall spoke to the already converted.
Home and I start to write the blog. I am still not glowing in the dark and I detect no super powers developing. But I am looking forward to the start of the television adaptation of Good Omens tonight on BBC 2.
A day when the workers have gone to work and I have a brief lay in before getting up and clearing the house up a bit. Breakfast is grapefruit and coffee as I look at my e- mails and organise the day. Washing in the machine and the dishwasher on I laze for a bit before getting ready to meet my friend for lunch.
It’s a short drive to the pub we have agreed to meet at and we find that we arrive at the same time. Settling into our reserved table we set to chatting. It’s a real pleasure to have the space and time to have a conversation that can roam across whatever comes to mind. We take our time and compare experiences of things like book clubs. Before we realise it several hours have passed by and I need to head to the gym while my friend has to make her way to her yoga class. So I drive to the gym and read the papers while waiting for my partner to arrive. Once my partner arrived we went up to the gym floor. It was packed with New Year get fitters who were accompanied by the rustle of new spandex. The tightness index of spandex is clearly going up. Second skin is not an adequate description. All I could get on was a bike, so I peddled for an hour and 564 calories and 10,000 steps.
Home and a porch full of packages, two for me, which when I open are thoughtful, kind and stimulating from a good friend in York. She has been unable to resist her Occupational Therapy training and sent me a solution to my numb finger’s difficulty with buttons. I am really pleased and will practice in the days to come as I have some work commitments that are probably not T shirt suitable. The other present a book to add to my growing pile of future reading. Dinner consisted of cold meats and grapefruit after which I sat in front of the TV typing the blog.
It’s one of those days which is just normal. It reflects one of the comments by my friend at lunch time, that I look so normal. Apart from my oddly thickened nails I obviously appear normal to the outside world. This being “normal” to everyone and the outside world is a strange factor that I am still not sure of. I am not sure what effect this is having on me and how I am interacting with the outside world. I suspect that my altered perception of myself has changed the way I interact with the world if part of me thinks that the world can see that I am cancerous. I wonder if some people with cancer go on their “experience binges” as a way of saying “look at me being normal doing all these things that others do”.
Below are two poems that I found while researching Probation LDUs this morning. In the Worcester LDU web page I found these in the women’s services page. I liked them and thought they reflected some of my experiences of the industrialised oncology services. My view of the verse referring to God is of course that God is mute because he does not exist, but it obviously works for the poet.
When I ask you to listen to me
and you start giving me advice,
you have not done what I asked.
When I ask you to listen to me
and you begin to tell me why
I shouldn’t feel that way,
you are trampling on my feelings.
When I ask you to listen to me
and you feel you have to do something
to solve my problem,
you have failed me,
strange as that may seem.
Listen! All I ask is that you listen.
Don’t talk or do – just hear me.
Advice is cheap; 20 cents will get
you both Dear Abby and Billy Graham
in the same newspaper.
And I can do for myself; I am not helpless.
Maybe discouraged and faltering,
but not helpless.
When you do something for me that I can
and need to do for myself,
you contribute to my fear and
inadequacy.
But when you accept as a simple fact
that I feel what I feel,
no matter how irrational,
then I can stop trying to convince
you and get about this business
of understanding what’s behind
this irrational feeling.
And when that’s clear, the answers are
obvious and I don’t need advice.
Irrational feelings make sense when
we understand what’s behind them.
Perhaps that’s why prayer works, sometimes,
for some people – because God is mute,
and he doesn’t give advice or try
to fix things.
God just listens and lets you work
it out for yourself.
So please listen, and just hear me.
And if you want to talk, wait a minute
for your turn – and I will listen to you.
Author Unknown
Listening Poem
You are not listening to me when…
You do not care about me
You say you understand before you know me well enough
You have an answer for my problem before I’ve finished telling you what my problem is
You cut me off before I’ve finished speaking
You find me boring and don’t tell me
You feel critical of my grammar, vocabulary or accent
You are dying to tell me something
You tell me about your experience making mine seem unimportant
You are communicating with someone else in the room
You refuse my thanks by saying you haven’t really done anything
You ARE listening to me when…
You come quietly into my world and allow me to be me
You really try to understand me even when I am not making much sense
You grasp my point of view even when it goes against your own sincere convictions
You realise the time I have taken from you has left you a bit tired and a bit drained.
You allow me the dignity of making my own decisions, even though you think they may be wrong
You don’t take my problem from me, but allow me to deal with it in my own way
You hold back you desire to give me good advice when you sense I am not ready for it
You give me enough room to discover for myself what is going on
You accept my gift of gratitude by saying how good it makes you feel to know that you’ve been
helpful.
I woke up in an empty house this morning, it’s raining outside and I thought “Brian won’t come today”, then I remember, “Brian’s dead”. Brian isn’t coming ever again. It’s a thought that repeated itself during the day. I suspect there might be other days like this, but then that isn’t surprising. I’ve not told the garden yet, but I suspect it knows already.
So I get up and get my work ready for the meeting this afternoon. Once I am clear about my route and what I am going to do I go for breakfast in the village cafe, do the crosswords and then return home to the car. Being slightly tyre paranoid I drive to the garage and check my tyres, spot on. I put more air in anyway and my tyre paranoia disappears. I drive to Sutton Coalfield YMCA for my meeting, which goes well. Back home I reboot the boiler and settle down to write the blog. We have a house guest tonight so I little tidying is done and of course the standard toilet roll audit in the toilets. After that she will have to take us as we are.
It’s a week since the end of chemo and I am not sure how I am at the moment. I weighed myself this morning and came in at 98.6 kilos. 17 days ago, in the first week of my last cycle I was 100 kilos, so I suppose my efforts since the New Year might be paying dividends, along with a lack of steroids and the dwindling effects of the yew tree bark poison. My body feels as if it has less aches and pains, which means it is important to keep going to the gym and doing the work. I need to to do more core and upper body work as well as burning off the calories. My hands have cramped up less often over the last couple of days, which I cannot explain reasonably. The biggest inconvenience is my thickened finger nails. It is clear that cycles one and two created the initial thickening of the nails. Interestingly the thickening progresses in thickness from little finger across to the thumb. I have a small ridge for each of the other four cycles so the ends of my nail are the problem. This couple with the residual numbness in my finger tips from the chemo means that my fine manipulation skills are not good. I find small button such as those on a shirt are difficult so prefer T shirts for the moment. I likewise prefer clothes with zips, which seems to be more manageable.
Obviously the weight gain around my gut is the most psychologically distressing. Although I have bought trousers with a two inch increase on my normal waist size I am still conscious of my expanded being and self conscious about the bulging nature of my body. It is from this baseline that I shall be measuring myself over the coming weeks.
The tricky bit is keeping track of my psychological state. Trying to avoid becoming self obsessed and overly narcissistic is quite difficult when carrying around something inside yourself that is trying to kill you. Actually that’s not true. Cancer has no idea that it is killing me, it is just doing what biochemistry and physiology does. There is no sentience in there knowing what it is doing. There is no “being” with an appreciation of life and death or intentionality, just stuff growing in a maladaptive and non synergistic way. Whereas I am sentient with a sense of life and death and therefore I am doing everything I can to make my physiological and biochemical environment as hostile and death inducing to all those errant, malfunctioning, bastard cells as I can. Go Rocket!
Today was a wake up late day, a go and make a cup of tea and go back to bed day. After such a lovely evening out with our friends the night before and a very good meal it seemed a suitable Sunday morning lay in. We had finalised our civil partnership ceremony with our friend who is going to be the conducting registrar during the meal so we were pleased to have go things clear, which meant we could finish our organising. All of which I did until my partner got up to make breakfast and found a message to ring a friend. She came back and just said “Brian is dead, died of kidney failure last Thursday”.
Brian has been coming to do things in our garden for about twenty years. Much of how the garden looks is down to Brian. This spring will be full of daffodils, crocuses, tulips and snowdrops that Brian has planted over the years. He was part of the family having known our daughters since they were young girls who he always remembered and asked about. Every Christmas we made him a full size Christmas cake, which we coupled with a bottle of his favourite Jack Daniels. In fact the last time we saw him was just before Christmas when he dropped our Christmas card in. My partner gave him a lift home with this year’s cake and bottle. That was it. Although he had recently had a cold which he complained he had had trouble moving, there was no indication that he was about to be so severely ill and ultimately die. It is always a surprise when someone who has been in your life suddenly dies and leaves a gap. Brian was a vegetarian, an animal, lover as witnessed by Rupert his dog, the cat and his birds, and he earned his living gardening. A fit and positive life style that I thought would take him far beyond me. He was my age but someone I thought would out live me. It just goes to show how fickle and arbitrary life can be. I find myself wanting to go to the funeral, not a usual response for me, but I do not think I want to be in a state of “Brian not there” and that’s it.
Needless to say breakfast was a quiet affair. We tidied up and got ready to go to the gym. It was the gym or going to watch Leicester Tigers play Cardiff Blues in a cup match. Given where I am I will always chose to be active rather than to be a passive watcher. It feels my current situation demands it, although thinking of Brian his healthy life style appears not to have helped him. We go to the gym and work out. I cannot get a cross trainer so I settle for a bike and pedal away for over an hour to get my 600 calories burnt and to collect the 10, 000 step reinforcement. We return home to get dinner ready and for me to blog. I’m not feeling “bloggy” I have to admit and suspect I might end up watching TV tonight rather than settling down with a book. I think my partner and I feel surrounded by death at the moment as she is going to her aunt’s funeral tomorrow with her mother. So something mindless is probably the order of the day this evening.
Breakfast
Clean fish out
Watch Rugby
Bath
Go out to dinner.
I woke early and moved my car to let my partner go to work. The usual tidying and breakfast plus drugs routine and then I was reading waiting for the Sainsbury delivery. It duly arrived and I stowed the goodies away. The post arrived and brought me a letter from EE basically threatening me that if I did not pay them £30 they would grass me up to the credit agencies. Cuts no ice with me. I rang them and asked what it was for, they were vague to start with except hat it was an old account about which I had forgotten any security answers to. I realised that this was for a mobile dongle that I had got years ago and had been paying Orange for years on a direct debit. The helpful person at the other end went off to talk to his manager and left me listening to crap music. Result they were happy to close the account and they had decided to waive the £30. Thank you very much I enthused and smiled as I put the phone down. I knew it was a good idea to cancel all my old direct debts when we set up the joint account. I relaxed in to writing letters. By lunch time I was craving Thia chicken soup at the gym, so I drove via the post box and indulged in soup and hot chocolate surrounded by ladies that lunch and those that bounce up and down in water believing that this is good for them. I returned home and finished my washing and started the blog.
I realise that this waiting is very like a Kafka story, The Trial in particular. This strange state of waiting and not knowing seems familiar coupled with a sense of being watched by dark figures.
Tonight we are going to the opening show of the Leicester comedy festival. It’s a bit of a gamble on who will turn up. Sometimes it is good other times less so. Hopefully tonight will be a good one; I could do with a lift. Today is the first full moon of the year, that’s encouraging.
Apparently I snore. Apparently I snore so loudly that my partner abandoned me in the middle of the night and took refuge in the spare room. I noticed at 2 in the morning and went to look for her. Having found her I returned to our large bed and “starfished” immediately, hoping to wake refreshed in the morning. The problem with this is that I was now in charge of the alarm clock. So I fitfully slept the night away, waking at regular intervals to check the alarm was not going. When it did, it did so quietly. It sounded as if it was apologising for having the temerity to wake me up. So up I get and go and wake my partner. There was then a three way scrabble to get ready and leave the house. I am the last to leave having showered , breakfasted and drugged. I drove to Birmingham YMCA, having to check the post code once I had arrived at a rather nice group of houses in a cul-de-sac. I had transcribed an F for an A. To my relief my destination was just around the corner.
I introduced myself to reception, gave them my car registration and was lead up to a training room with “Enabling Service “on it. I was getting suspicious as I thought I was coming to a senior managers team (SMT) meeting. I was assured that no such meeting was booked and that this must be me doing the training to 25 delegates who would arrive at 10 to be enlightened. Fortunately I had my portable office with me and set up a training presentation on the projector and was set to go for a mornings training at which point a familiar face arrived and we had a chat about what we thought we were doing. She thought we were meeting the SMT as well and was as bemused as me. The receptionist and training admin people came in to check on us and they reaffirmed that no SMT meeting was expected, to which my colleague pointed out that they were all sitting in the cafe downstairs. The two workers disappeared and returned and apologised for the miscommunication. I was off the hook and did not need to be doing training, someone else was doing that on something very different. At this time the SMT arrived and we decanted into a different room where we introduce ourselves and got on with the business.
A couple of hours later I emerged and headed for the car. I was home quite quickly and found myself doing the clearing chores and cooking a protein lunch before deciding to go to the gym. The gym was tough. My hour on a cross trainer yielded 718 calories and the 10, 000 step reward, but I was really tired by the end of it. I think I am feeling the effects of steroid withdrawal at the moment and a disturbed gut as a result of it.
I notice that I change differently in the gym now. Once I would just strip off and parade around naked while I organised my locker and my gym kit. Not anymore. Now I disrobe in such a way that only ever half of me is naked, and for as short a period as possible. I’m embarrassed and appalled by my fatness created by the hormone stripping and the chemo and the steroids. I take a larger towel with me so that when I go from locker to shower I can try and disguise my spreading form and when I emerge from the shower wrapped around me I dress in half stages. Thank goodness I am British and learnt the art of getting swim wear on and off without a hitch on various windswept English beaches as a child. This skill is now standing me in good stead. I hope my efforts with diet and exercise work, at least a little. Its having the energy to exercise enough to drive off the pounds, or in my case the kilos.
I drove home via the garage to fill with petrol and arrived home craving something simple and warm to eat. Chicken soup and cold new potatoes filled the bill. I retreated up stairs to finish Good Omens and to await the arrival of my partners singing teacher. I blog with the strains of a ballad in the distance. Tonight is an early night. I crave sleep, deep uninterrupted sleep, like sleep from night to light, but I know that I shall have interrupted and spasmodic sleep and wake feeling tired. It is that slow grind of poor sleep that accumulates until at some point I will just collapse and sleep for hour perhaps days. Anyway tomorrow I have to get up early to move my car to let the worker out and attempt to be cheery when Sainsbury’s deliver early.
Today I drove back from Sheffield and found I was feeling worse as the drive continued. Got home feeling pretty lousy in time to see my partner off to see her mother. I settled down to do some work but ended up retreating to lay down and rest. I read Good Omens and dozed until my partner came home. Dinner, more Civil Partnership thinking and then the blog before sorting out my work and travel plans for tomorrows trip to Birmingham. I am hoping for an early night and a reasonable nights sleep.
This is the first two days without chemo and steroids. I’m hoping my feeling grim is the result of withdrawal. If it is then its a case of gritting my teeth and just getting on with it. My 28 day injection site is still sore, red and irritatingly uncomfortable. Probably needs a warm bath to ease it. Just one of those days when its okay not to be okay.
