toothbrush

CYCLE 3 DAY 20

Its that time of the month, when I say farewell to a cycle toothbrush and prepare to launch into another cycle. My PMT (Pre Medication Tension) is always higher at this time of month but then if you rob me of my testosterone and make me fat then fuck you. “Non Regrette Rien” as Edith Piaf would sing.

Non, rien de rien
Non, je ne regrette rien
Ni le bien qu’on m’a fait
Ni le mal
Tout ça m’est bien égal
Non, rien de rien
Non, je ne regrette rien
C’est payé, balayé, oublié
Je me fous du passé
Avec mes souvenirs
J’ai allumé le feu
Mes chagrins, mes plaisirs
Je n’ai plus besoin d’eux
Balayé les amours
Avec leurs trémolos
Balayé pour toujours
Je repars à zéro
Non, rien de rien
Non, je ne regrette rien
Ni le bien qu’on m’a fait
Ni le mal
Tout ça m’est bien égal
Non, rien de rien
Non, je ne regrette rien
Car ma vie
Car mes joies
Aujourd’hui
Ça commence avec toi
Edith Piaf.

https://binged.it/2rcoUDW

Let me be clear for those that go to the link and get the English lyrics or read French, this is a reference to my relationship to the toothbrush not to anyone I know.

So I am up having been fed coffee and bacon sandwiches, I am ready. I’ve downed my extra block dose of steroids and we take off for the hospital. The drive to the hospital is like a lucky dip. The traffic density is never the same in the same place. So we crawled for the first part of the journey and then freakishly there was no problem getting into the car park. We were actually early enough to grab a coffee pre appointment time, I noted the place is almost empty.

Clear lack of enthusiasm for cancer this morning.

Thinking I had time, after all the nhs doesn’t run on time does it, I went to the loo for a pre-emptive piss and returned to my coffee to find I had been called early. Coffee dilemma, dump or take with? Took with. My oncologist, “He who made a pact with the devil”, is smiling, hand shaking and being affable. I’m warming to the early morning version of my oncologist. Yes my PSA is down to 2.2, my finger tips numbness appears to be receding (medical advice is to buy thermal gloves, thank goodness for the medical profession, I’d never have thought of that!), and I am surviving. On the down side I’m getting fat. “Ah” say the nurse and oncologist in unison, “that’s the testosterone” ( something else I might have already worked out). We chat about progressive tiredness and the oncologist gets a chance to explain his ladder analogy. Four steps up, three back, repeat six times. I make that six steps back to recover from at Christmas and New Year. A voice whispers temptingly in my ear that famous line from Zulu uttered by Stanley Baker to a young Michael Kane: “Brandy’s for heroes, Mr. Hook. The rest of you will make do with boils in your skin, flies in your meat, and dysentery in your bellies.” and for the first time in a long time I begin to think a celebratory Armagnac might be in order.

Before we leave clutching another blood sample demand slip I ask about my “21 day injection”. Oncologist looks puzzled and puts me right. “No its a 28 day injection. If your GP is happy to give it to you every 21 days then its up to him it comes off his budget”. To which I respond “I’m worth it.” Oncologist has the bloody temerity to reply ” No your not”. Just remembered why I don’t like this twat. He does assure me that a 28 day cycle does not do anything different from a 21 day cycle so I will not be losing out. I smile and mentally deck him blaming my PMT. We leave and finish our coffee before heading for the car.

Once home my partner makes a lunch box up and goes to work. I strap on butler mode and clear the kitchen. I book a service for my car and write a brief letter. Its the gym for me next. Having not been at the weekend I am really missing it, so I pack my kit and head off. The gym lounge is full of mainly women lunching, while the changing room is full of men fitting in a lunchtime session either from work or trying to avoid the tea time rush. I bound up the stairs and pretty soon I am cross training to a randomised iPod. 775 calories I burn on a reasonable resistance but to my chagrin I do not get the 10, 000 steps celebration. I have to get off after the warm down and walk around the gym floor a couple of times until I am duly rewarded with my Fitbit exploding rocket of achievement. Just for the hell of it I do some core work and some weight work on the arms and upper chest telling myself that this gets the best deal from the block dose of steroids. The reality is I am trying to build huge chest muscles to hide any budding tits I maybe growing from the hormone loss. I am hoping never to need to meet the specialist lady from M&S in the bra section. A most welcome shower and I am off on the home ward journey.

I park in the village to post my letter and realise I am hungry, so I pop into the village café for a coffee and a bacon and sausage baguette. I am soon joined by my eldest daughter who has finished work. We chat about her work and weight lifting for a while and I then give her a lift home. Once home its time to cook a dinner. We still have a huge amount of sauceages from the weekend family day so I decide to cook cassoulet. No idea how but a quick google soon sorts that and I am off on the preparation. No beans of the right type in the cupboard so a can of baked beans gets opened and the contents washed. I double the wine content of course. Pretty soon the casserole pot is bubbling away on the range. Setting it to low I leave it to bubble and start the blog. In due course my partner returns from work and goes through her geting home ritual and then its time to eat. I laddle a portion out and add a slice of bread to soak up the delicious sauce and retreat from the kitchen. No one follows me. A little later my partner appears, apparently the women of the house do not want to soak up the delious sauce with bread, they have cooked extra vegitables. Mandarins and ice cream later and I am back to the blog having a huge hot flush. Now there is something I did not mention to the oncologist. Probably no point, he would only have suggetsed bloody promrose oil or antidepressants again. So now once I’ve published the blog I shall prepare for tomorrows poisioning. What to wear is still an issue, but that also requires a quick look at the weather forcaste. The survival bag is now a routine that is well established. Hopefully I shall sleep tonight without too many loo breaks and wake fresh and begin to forge a new relationship with the new toothbrush for cycle 4. “Non Regrette Rien”

It is this point in the evening when the actual realities of tomorrow kick in. Will they get the cannula into the back of my hand? Will I respond as I have been doing or will it be different? Will my fingers get numb again? Will I be able to fulfil my work appointment the day after? Will I have to wait? I try to pack these up into a tidy box and tell myself to focus on what I can control and to keep my direction; to keep making the effort and to stay true to myself and those close to me. Survival and living more are my goals, my dream.

“Somewhere over the rainbow,
Skies are blue.
And the dreams that you dare to dream really do come true.”
Judy Garland.

https://binged.it/36yOXVZ

THE END OF CYCLE 1

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.

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.