So here we are with my fingers crossed as I leave chemo behind. I’ve stopped talking steroids, so now I will wait for whatever that means for me. Now more than ever I need to focus and keep my direction. I must not kid myself that having done chemo that I have a clear space in front of me and that I can relax for a while. Cancer won’t relax, or take a time out, it will keep trying to kill me and finding new ways to adapt and survive. I expect it will take a little longer for all that tree bark poison juice to leave my system, but it will be quite short at which point cancer gets let off the hook and can begin its come back. Clever bastard cancer got to give it its due it’s bloody persistent. So I have to remain at war and keep doing the things that I think help stay alive. Being active seems to help me stay ahead as does going to the gym. Right now I am keeping to a diet of sorts and keeping busy in terms of work. So I am of to Sheffield today for a meeting tomorrow and then I shall be in Birmingham on Thursday for more Enabling Environment work. So its life as usual except it takes on a new meaning, its life as defence against cancer. I see no other acceptable alternative. So if I appear a bit driven, irascible and pre occupied at times, that’s me in the corner fighting.
Ultimately this is about staying alive as long as possible in a state of dignified humanity and being able to go on making meaning of my personal universe, making a contribution and having my time with you. Found the Hilda Hilst poem while surfing the net and thought it reflected the sentiment.
Send me word, if you can,
“The moon is full, the house is clear.”
Send me word, and paradise
Shall be nearer, and your uncertain face
Shall seem more recent.
Send for me if your day
Is as long as your night. If it’s true
Without me you see nothing but monotony.
If you remember the gleam of tides
Some pale red fish
In certain seas
And my wet feet, send me word:
“It’s a moonless night”
And dressed in light, I come to see you again.
THE FINAL TOOTHBRUSH.THE GANG GET TOGETHER FOR AN INNUMERATE SHINDIG!
So this is it, the last day of the last cycle of chemo. My brave cycle 6 toothbrush joins its compatriots to be replaced with a new “fingers crossed” brush. No more steroids, the last were this morning and in a small act of defiance there will be no steroids tonight, so that’s it. Now I will see what steroid withdrawal will bring. Go me!
So it might be the end of chemo but not the end of hormone stripping, so I was up early to move my car of the drive and not long afterwards I was walking down to the GP surgery clutching my Firmagon to myself. The nurse and I exchanged new year pleasantries as I loosened my clothing enough to give access to my belly fat. A quick consult of the notes and we establish its going into the right side this time. The nurse makes the injection up and because it is quite viscous it takes a while to empty the syringe into me. A quick elastoplasts applied and I am done for another month. We book my next set of bloods into the dairy and I am on my way. I return home and begin to check my diary arrangements for the week. Yes my meeting in Sheffield is on, so I confirm my hotel. I send dates for other possible meetings. I set to and tidy up the house, emptying bins and the like. I order something for the civil partnership day and then I go for a late breakfast at the village café. I read a few pages of Good Omens and listen to young man being guided through what appears to be a criminal examination form. I wasn’t that interested in the content I was fascinated by his appalling handwriting, it was far far worse than mine, which is saying something. I returned home and changed the cars around from garage to drive and vice versa and readied myself to go into the oncology unit to get rid of my sharps bucket and collect the raffle prize I had won. This went amazingly smoothly with no wait at the car park, so I was out in a matter of minutes clutching a heat shaped container with cosmetic products in it. Very me, but my skin is smooth enough right now.
Home and my injection site is beginning to feel sore so at three o’clock I decide to have a hot bath. It’s cold outside and raining so I feel happy to lob a bath bomb into the bath and get ready to lazy. I sit for ages in the hot and foamy water reading Good Omens, during which my eldest returns from work. Eventually once I have reached the crinkly stage I get and come to the computer to write some of the blog. Tonight the photographer is coming tonight to discuss our requirements for the 24th. He is deaf so will be accompanied by someone who will act as is ears. So it will be an interesting evening, especially as I shall be missing a live football match on TV. So my aim is to get through the meeting with the photographer and get to bed early. Last night was full of hot flushes and some really nasty nightmares. I wonder where my unconscious gets some of its ideas from but I am sure I’ve never consciously had the desire to skin a monkey alive. Nasty and not something that is conducive of sleep.
Tomorrow it becomes the “fingers crossed” stage. Go me again!
Sunday lay in and more Civil Partnership day planning, that’s
how my day started. Breakfast and drugs came much later. There was then a bout
of furious hovering, dusting, cleaning and polishing to get the house ready for
everyone to return to the real world of work and the usual grind of the usual
trying to stay one step ahead of the next crisis, nasty surprise or mishap. It
always feels so much better having a crisis if the house is clean and tidy.
Tidy house, tidy mind. So with all this good domesticity behind us its almost
time for the gym, when my eldest daughter is delivered home by her friend in
Norwich. He needed to return straight away so it was literally a flying visit.
My eldest produced a surprise, and unread Terry Pratchett & Neil Gaiman, “Good
Omens”. I of course started to read it straight away. It immediately made me
laugh and it instantly became my bedtime book. Tonight will be an early night
with Good Omens.
My New Bed Time Reading
A quick visit to Sainsbury to gather missing supplies and then it was on to the gym. The gym was a pig, I huffed and puffed for my 714 calories and at one point I thought I might not make the hour but with fifteen minutes to go I got my 10,000 steps Fitbit reward and so I carried on to the end. I was tempted to leap on the scales and see if my new, now 4 day diet was working. This of course is madness and I reigned myself in. The rule is I weigh myself once a week, at the same time, on the same day, naked, on the same scales. Once and only once. If there is a genuine weight change it needs a week to show with any degree of statistical significance. My body gave me a gentle nudge that it was still fighting the poison of chemo by disrupting my gut temporarily, but I weathered that and was okay again by the time we clambered back into the car to head for home.
Home for dinner, the end of a football match and Dr Who and
then it was blog time. Tonight I will retire early and read Good Omens till I
drift off to sleep. I am beginning to get anxious about ending chemo and moving
into the “crossed fingers” stage. I know that I will miss regular feedback
about my PSA level and the other blood results. It is the feedback from the environment
that tells me whether what I am doing is being effective or not. Without this feedback
the risk of stress is increased and there is a possibility that I lose a sense
of efficacy, which in turn taps into how I make meaning of life. This neatly
ties the psychophysiological work done on “executive stress” and the work of Ron
E Baumeister to be found in Meanings of Life. I’ve not got time to wax lyrical
about the construction of personal internal universes and their relationship to
reality and life management, let alone how this might be tied to
psychophysiological characteristics of the nervous system as modelled by the Russian
school of psychophysiology, namely Neblytsyn; I’ve got Good Omens to read.
Tomorrow is a 28 day injection day at the GPs at 8:30, so lots to look forward to. It pigeon egg in the stomach time again. I have to say not having testosterone not only makes me fat, but it is giving me the most incredible smooth skin. Silky in fact.
Christmas is over, packed away and stowed in the loft for another year. Two days of letter writing, gym and the rest has been preparing for the CP day. The once magnificent Christmas tree is in the recycling bin, chopped up and jettisoned. Now I get on with life and my personal battle for more of everything. Just three moons to the end of cycle 6 and then the “fingers crossed stage” starts. I already have CT bone and abdomen/thorax scans booked. Lucky me.
Well two days into the roaring 20s and I make my first cock
up. I leapt from my bed before 8:30 because Sainsbury’s is delivering. Well
after an inane morning news programme followed by the trials of a sick koala it
turns out they are due on Friday. At least by now the dishwasher is on as is
the washer with my latest pile of dirty clothes. The place is tidy so I abandon
ship and head for the gym with my kit and portable office. I settle in and set
about writing my bit for the CP on the 24th. It takes a time to do
this with a lot of editing. I cannot be hanging around on the day with too much
faffing so I get it to a reasonable length. All this while I eat eggs Benedict
and drink hot chocolate. The Wi-Fi at David Lloyd is antediluvian in speed and
in the end I give up trying to use it and plug my phone into the computer and
transfer stuff from one to the other as I try and organise the things I need
to. I feel momentarily tech savvy. All of this I could have done at home but I
need to avoid getting stir crazy and I have a sense that I would not have
completed my writing task while at home. I am happy to spend the day here and
meet my partner later to actually use the gym. For some strange reason there
are fewer distractions here. Apart from the Snickers bar that caught my eye at
the bar, but at this time of year when I am abstaining most sweet things catch
my eye. Its par for the course. It will go on for a few weeks and then it will
pass me bye as I get on with things. The hope is that by this time I am
beginning to see some results such as a loss of weight. I guess this is part of
my current patience learning.
In the meantime I need to a bit of research to find out if there are any side effects of coming of the steroids I am on. On the 7th of this month I stop taking any steroids so I need to know what to expect. This latest curiosity is prompted by a comment by my partner who in conversation said I could not just come off them. It sounded like she knew something I did not. So I need to find out as part of my “Knowledge is power” approach to managing my cancer and its treatment. Apparently the prednisolone needs to be trailed off; no one told me that, unless my dosage is so low it won’t matter. Withdrawal symptoms include; weakness, fatigue, decreased appetite (yippee), weight loss (Hurray), nausea, vomiting, diarrhoea and abdominal pain. The withdrawal symptoms can allegedly be difficult to diagnose. The good news is that short term usage is unlikely to induce withdrawal symptoms. I reckon that the 126 days of my chemo cycles is short term, even given the 18 days of block doses that are included in that. So if I am l lucky nothing will happen, if I am not lucky my appetite will reduce, I will lose weight, feel a bit tired and have the shits for a bit, which looks like a win to fat boy! So I reckon that’s a win win situation, roll on the 7th of January. With luck my Civil Partnership clothes will fit me better on the day. Well that was research well worth doing; it’s cheered me no end. The one thing that worries me is that no one has talked to me about coming off my steroids, just like no one told me I had to self-inject for five days each cycle. It would appear that it’s what people don’t tell you that is the biggest problem. I suspect that they either think someone else will have done or that there is just too much to remember that it’s usual to forget bits. I suppose it’s all part and parcel of the learning that goes with joining the cancer club, like the institutionalised sexism of assuming men would not want wigs and that women would be more affected than men. Where’s my false beard opportunity? And what about a merkin?
So this is a new year. 2020, the roaring 20s is what everyone seems to be calling them. I wonder where they get such fanciful ideas. I woke up feeling still 2019 and still with cancer. I’ve not made New Year resolutions but will attempt to make some life style changes. A few diet changes, more fruit, protein and less carbohydrates, certainly no sweets or sugary things. More of the things that give me magnesium like avocados and nuts. Of course I will keep taking my drugs and making sure I get my B12 shots on a regular basis. More exercise is going to be a priority when I can. I need to keep pumping the blood round and making the heart and bones work. I need to combat the weight gain, by exercising on a balanced diet.
Finally I need to learn patience. I’ve no idea whether or if my nails will grow normally again, I have to wait. I have no idea if my beard will grow back, I just have to wait. I have no idea if my hair will grow back, I just have to wait. I have no idea if I will get my sense of taste back, or lose the metallic taste, I just have to wait. I do not know if I will stop getting cramp in my calves, I will just have to wait. I’ve no idea if I will get my strength back, but I can work on that. I have no idea if I will completely lose the numbness in my fingers, I will just have to wait. I have no idea how my body will continue to respond to being stripped of testosterone, I will just have to wait. I have no idea if I will get to be able to sleep for more than three hours before needing to empty my bladder, I will just have to wait. All this and I have not yet reached the end of cycle 6, I’ve still got another 5 days to go before I have come to the end of the chemotherapy. I have no idea how long the cumulative effects of being poisoned since the 3rd of September 2019 will last. All I can do is wait. I’ve no idea if how I feel about being a sexless fat semi male is going to change or whether I will continue to avoid mirrors, dislike the feel of my own body and think I smell of chemotherapy. All I can do is work when I can, be scanned when I am told to, give blood samples when I’m told to, attend oncology appointments when I am summoned and pretend that it’s possible to live a life with some sort of meaning, efficacy, and contribution to make. It becomes an “as if” life. I shall live “as if” it is all possible while knowing that I live on an island with the sea of the real world lapping or storming around me. The direction is to keep putting things in order for the family, doing the right things, staying focussed and under no circumstances buckle. So here I come into 2020, waiting, learning patience and waging my own internal war.
As for the practical things of the day. I did my claws, visited my partner’s brother to deliver his CP invitation and cooked a curry. We also ordered food to be delivered tomorrow at 8:30. Tonight I watch football, write the blog and plan my day as my partner returns to work tomorrow. So tomorrow I fix the direction and focus on the life in hand.
It’s that day, New Years Eve, when I wake up and think bacon sandwich and magically it happens, lazily. There is a superstitious tidy up and putting things in order just so that things are straight for the new year. Then it’s time for the gym as it closes at four on a bank holiday eve. So off we go to burn 774 calories and get our 10,000 steps in, Success and a warm shower to finish off. I go into 2020 in a non chemo smelly state. No sitting around feeling good about ourselves it off to the local Italian to dine. Definitely not going to make a mess in the clean kitchen before New Year. I drive home as my partner has had a glass of wine and we set to on the last tidying up.
A number of friends have already posted their New Year messages on WhatsApp. It is clear that they either think that they are going to be so rat arsed at midnight that they stand no chance of sending a sensible message, or they are already in their PJs and are intending to sip hot chocolate and go to bed early as they do not give a rat’s arse about New Year. My plan is to Hootananny with Jools and then go to bed.
I’m sick of 2019, and I’m sick of being sick in 2019. Just to remind me that I’m going to be sick in 2020 an appointment letter arrived this morning booking me in for a bone scan on the15th of January. I get to be radioactive for 24hours again, and again I bet I do not glow in the dark. Where’s the fun gone in nuclear medicine?
Yesterday was a day of laziness and the gym. I woke up
feeling quite poisoned and not having slept until the light of morning. A
recurring theme is emerging regarding my sleep. This sleeping better at dawn
and into the light is becoming quite marked.
The one good thing about the day is that I get to the gym. I grind out my hour on the cross trainer and burn 770 calories. Again I have to walk the gym floor to achieve my 10,000 steps reward from my Fitbit before I flop onto a mat to stretch out. I get the strange “tell your flab” machine to do a read out on me. My weight I knew about but prior to being ill I had a physiological age of 53, of which I was rightly proud, since being ill and chemo it has jumped to 69. This is very disappointing and means I have a lot of work to do once the chemo ends on the 7th to get my fitness back. I feel like I need to rebuild myself and that means I will need to do something different in my training. It’s going to be something more like rehab than training.
Once home we ate all things in the fridge that we bought
as nice to haves at Christmas but were in danger of running over there sell bye
dates. The result was an indoor picnic, which was a pleasant change from
standard hot meal format. In the middle of this a university friend of my eldest
daughter arrived out of the blue and whisked her away to the cinema. When they
arrived back my eldest said she was off to Norwich with her friend so she could
go to a New Years Eve party with him. Ah the impetuosity of youth. So off she
went with a bag of books and glad rags wearing sparkly Doc Martins to spend a
couple of days continuing to write her doctoral midterm assessment and to
party. I finally retreated to bed late hoping to sleep.
Monday 30th December 2019
9:30am is becoming early for me but there I was sitting
up in bed drinking coffee, trying to make the effort to get my arse out of bed and
get moving. So up I get and start to tidy stuff up while my partner makes me
the life enriching bacon sandwiches. We are both determined not to sit around
too much, so we clear the decks and get ready to go out for a walk.
Sanctuary; alledgedly
The most meat
After a bit of faffing about we drive off to Bradgate Park, don our boots and walk through the park. We walk past the deer sanctuary and onto the cafe. There is a long queue and slow service and I am impatient so we turn around and start back. My partner takes advantage of the facilities and while she does I look inside the information hut, where I find a vending machine for venison. Nothing else just packets of dead deer, the well managed dead of the herd that live in the deer sanctuary. I guess if it helps keep my council tax down its a good thing.
The edible at play
The walk makes us aware that we lack one or two of the essential park walkers must haves, namely 1: A child, 2: a scooter, 3 a dog, and 4: a sports type buggy. What was noticeable was that a large number of adults were carrying any combination of the four essentials and in some cases all of them. By the time we made it back to the car I was tired and did not want to see another scooter for a long time.
Home and all the chores we had walked away from greeted
us on our return. So as a priority we walked down to the post box to send the
official invitations to our civil partnership ceremony for the 24th.
On the way back I picked up my next lot of drugs from the chemist. Always in
the back ground there is a kind of sub routine running that keeps an eye on my
drug supply. It checks that I have my next 28 day injection in stock and enough
pills to keep my drug pouch topped up for the next month. Once back the
remaining chores beckon, so more washing goes in and I start to catch up with
the blog.
I’m finding the start of a new year a double edged sword this year. I think I am too old to think that things can change overnight, at least not for the better; I will be pleased to have survived 2019 but know that 2020 will carry periods of fear and anxiety. For the first three or four months I shall be in a phase of waiting and seeing what happens, after that its anyone’s guess. At some point I want sunshine, beyond that I am not sure. There are some projects that need to be focussed on, like the civil partnership day, the completion of the poem typing up and of course the “fatboy” project. Beyond this it is grey, but then I spent my entire therapist career wading around in the “grey areas” of mine and everyone else’s attempts to make meaning of their lives, so nothing new there then. So 2020 should be a doddle, all I have to do is stay focussed, keep fighting and enjoy the grey stuff.
Christmas is jigsaw time, when relatives torture their loved ones with the jigsaw. Above are the two we got this year. 250 pieces of family fun with novelty pieces and a fiendish 40 piece little gem of ingenuity. Apart from a quick diversion to the garden centre to buy carrots this is what took up time today between meals and the odd rugby match on TV. Oh Sainsbury’s delivered as well. I suppose everyone has days like this occasionally. Tomorrow more action and effort, maybe.
It’s Friday and in this house, Boxing Day. Being Boxing Day everyone lazes and wanders about slightly over faced by sweets and newly acquired things which need to be found homes amidst all the other things. The only intrusion from the outside world is post and deliveries. My jacket for the civil partnership ceremony on the 24th arrives. I try it on in secret and then hang it up. It will be okay on the day. At least I think it will be providing I can put operation “Fatboy” into progress pretty quickly. In the atmosphere of relaxed lazing I retreat to a long warm bath enriched with one of my bath bombs. A combination of popping candy and golden glitter swirls around me and I read and WhatsApp. There comes a point at which the water cools to the point where getting out is the only option, for me that means I cannot avoid the scales. 100 Kilos!!!!!!!
100 KILOS OF GOLD
100 KILOS OF HEROIN
I know that everyone mutters “it’s the steroids” but this is serious. I’m not a ripped rugby player (like I used to be) I’m a guy fighting for his life against cancer and this amount of extra weight needing to be dragged around is a big impediment. My first thought is to dump all the sugar based Christmas goodies I can lay my hands on and start living on water. Immediately the little voice of resentment pops up and starts with its, “ for fuck sake your entitled to have some fun and indulgence over Christmas and the new year”. What it hits is my tiredness at having to make the effort all the time, every time, for all time. Staying alive for what I ask myself. The Dark and Tricky parts of me start to churn and nudge the “what’s the point” internal conversations into action. I turn to my shelf by the computer, where I am typing this, and there is Raspberry, tongue out and reminding me that it’s down to me what I choose and to stay focussed and keep my direction.
Raspberries to the Dark and Tricky
So it’s about when I start whatever it is I am going to do to combat this weight crap. Of course I will change my diet and I will change my exercise routine, but when and to what I am not sure yet. I still feel quite poisoned this cycle, although I hope that things will start to get better, however there is no guarantee of this. My fixed points are New Years day, which is really an arbitrary point and still in my cycle, and the 7th of January the last day of this cycle after which I will stop taking steroids. Four days to the first of 2020 or 10 days to the 7th and steroid freedom, which am I most likely to use most effectively is the question. There are a number of things I can opt for; recording my food intake, which will reduce my intake by 12% ; going for more protein and less carbohydrates; cut out sweets; cut out buns/cakes/tarts; cut out carbonated drinks; eat more fruit; eat more plants; exercise more; remove a limb. The last option is even too radical for me. The trick for me is creating a space where I can build a routine and have long enough to embed it as a habit. That’s a twelve week project according to the research into habit formation. It also sets the timescale for what is realistic, so I need to be patient with myself until the end of March. So by the end of March my weight needs to be going down consistently. This allows for an initial period where my weight may fluctuate for a bit as I do not know how the lack of steroids will work out. It also gives sensible time for my body to begin to adjust to whatever I decide to do to it. Sorted, all I have to do now is carry out the plan starting…?
Well that’s almost sorted, so its time to read and
prepare to go and see Cats with the family later on. Apparently according to
the critics its crap and social media is not being kind with a lot of people
claiming to have left the film before it ends.
Cats were good, but now time for drugs and sleep. Tomorrow we booked an early Sainsbury’s delivery slot so there will be no sleeping in.
