This post comes with a warning. If you would rather not read about constipation, laxatives, enemas, pooing, toilets and related concepts please move on to some other place. Unfortunately, these topics are unavoidable in any honest account of my disposition at present. I could talk about kittens and clouds just to shield my audience from the issues that really matter but the topic that matters to me just now is SHIT!

Before you read this somewhat gloomy assessment of a day in the life of me jump to the end to find the surprise. Maria and I are still trying to figure what just happened but maybe we never will. In which case it possible that in future our upstairs toilet will be known as the  Lourdes of Appleton Roebuck.  As far as I am concerned it should be.

I thought I would add to what must be a significant volume of literature dealing with what it’s like to deal with cancer in full flight – hopefully this will be followed by a contribution on cancer in remission but didn’t want to miss this chance to record the moment before it’s gone.

I suppose the most significant surprise is the degree to which the experts don’t know what’s going on or what to do about it. I don’t mind this at all except it does result in us following a lot of blind alleys. At each stage whether it is new cancer treatment or new pain treatment you expect something to happen. That expectation clouds any results that might occur. You may start to feel better because you are in less pain because of better pain treatment or the cancer may be being held at bay by the new treatment. There is no way of telling, no scans or blood tests will tell you. Of course your imagination is also clouding the results – new treatments produce an expectation of new outcomes that may or may not be really there. So it a bit like watching a board game where you don’t understand the board – things keep happening – pieces keep moving about but you don’t know who is winning.

This process manifests itself, in my case, as a state of uncertainty that resolves itself from time to time as a good day or a bad day. A good day equates to controllable pain and some slight mobility. A bad day is pain that interrupts the normal processes of the day such as getting out of a chair going to toilet etc such that you dread doing them and this exacerbates a negative cycle of neglect such that the dread horror of constipation comes crashing through the door of my rough peasant hut like some angry maiden hunter from one of the German Fairy Tales I am reading obsessively. Constipation, a trivial condition to most, is my trigger for extreme anxiety due to the fact that it hospitalised me about 9 years ago and the pain when conjoined with the myeloma was very very bad. I am so lucky that a call to the acute pain nurses and 6 doses of a laxative within one and a half hours fixed it. I could kiss her were it not inappropriate.

So each day and each night can be viewed as unremittingly varied by the contortions of my bodily functions or unrelentingly samey punctuated as they are by a lot of sleep, a lot of dozing, reading, writing, eating (although my appetite has declined) drinking – I am to drink an obscene amount water, translating, tinkering with phones, iPads and laptops and computer gear that can be operated from a lying position. I shower very infrequently and have had to stop bathing as it’s not possible for me to get out and dodgy getting in.

I am very fortunate in so far as I have no great urge to do anything else although I would like to be able to utilise my studio again. Each day I start hoping that today may be the day when a corner gets turned and proper obvious remission kicks in. And my understanding is that may still happen but what form it will take and when and whether it may occur remains an unknown. So now for example it’s 11:09 am. I am very comfy and happy in bed with a tabby writing this blog post. The pain is nil and my bowels are delightfully empty. I am a little bit out of it having taken my morning dose of pain killers but I don’t feels anaesthetised like I do sometimes. I can hear Maria getting on with a million care responsibilities listening to her Italian thrillers. If I were to try to get up the pain would strike various parts of my upper body strongly enough that I would not be able to avoid a squeak. I would need to adjust myself on the side of the bed several times, several more squeaks until I could sit still enough with my head resting on the zimmer in preparation to pull myself up onto my feet. I will sit for 30 seconds preparing. Pulling myself up is not as bad as the preceding steps and once I am up it’s almost ok. I take my stick which has been resting on my zimmer and walk to the end of the bed using the bed post as a secondary support. This pattern continues of stick and secondary support the 3 or 4 meters to the toilet door where I can turn on the light from outside then do my whatever from a sitting position with my head somewhat melodramatically buried in my hands to counter the pain which is actually quite modest. Washing my hands and sorting my attire is painful because it has to be done unsupported however the lure that this event is nearly at its conclusion is strong enough to lighten my load. I travel back to the bed retracing the route and method I used to get to the toilet. The final sit on the side up by the pillow will normally trigger a squeak of pain but it’s nearly over so who cares. I lift my legs into bed using my arms and hands pull the covers over and celebrate that I won’t need to do that again for another 2 hours. Unfortunately the two hour cycle persists day and night. This routine is more or less the same for whichever bed I have selected to spend time in. The downstairs bed is the best in the day because the room is north facing so I don’t have to fight with blinding sunlight to read my iPad but accessing the bed is hopeless because of the very narrow space between the walls and the bed pillow end. Also the route to the toilet is long and treacherous without any any supports on route and it’s so cold I emerge with my teeth chattering as if I have been struck with an instant fever. Arthur and Lisa’s room is another good choice but it south facing so more battling with daytime sunlight. It’s great to have a choice but moving from one to the other is the most frightful drag for Maria who had to move all my accessories, phones, chargers, leads, books, drugs, sticks, zimmers, dressing gowns etc etc. and this doesn’t take into account the move I make to the living room sometime in the afternoon or evening for dinner and TV.

Interruption 1

Ebi just rang me from the hospital so I was able to to update her on progress with constipation. I am so impressed with them. There are several of them in that team and they are all great. She will sort out more oxynorm for me because the increased dose has meant I am ploughing through it much faster than I had been. She laughed when I asked if I should continue with the mega dose of laxative the implication being only if I wanted to spend the next 24 hours on or waiting to be on the toilet. So back to the normal dose for the weekend at least.

Interruption 2

G rang to see how I was feeling. I feel bad telling him that I am still struggling but I don’t ever want to fib as then those occasions when thing are improving go for nothing.

Interruption 3

Off for an URGENT poo after finishing call to G

Interruption 4

A MIRACLE

Arthur rung while I was having my first completely normal and successful poo.

Something happened, utterly bizarre, possibly explicable but who knows. The pain that has been extreme for three days has gone. Not gone totally but back to normal levels. I can suddenly walk, stand and sit without squeaking. It is a miracle. The other possibility is that the oxynorm that I am now taking more frequently, has suddenly and I mean really suddenly kicked in. Neither seem particularly likely but for now at least I am going to enjoy the freedom to move about squeakless. I suppose given the last time this happened 10 years ago when I was hospitalised and the enema had a similar instant life changing pain killing result, maybe there is something going on in my bowel that hasn’t been detected that has a dramatic effect on the pain generated by the the myeloma. I may never know.

But I am happy!

I have been reluctant to share an update because nothing much has changed or is news- worthy. I am in a state of limbo – not sure what that means but I think its to do with dead unbaptised babies so not an entirely accurate description of my state but will have to do for now.

Positive things: I now take only 2 doses of two different pain killers per 24 hours. That means record keeping is dead easy. I have a slow-release opiate (oxycodone) which they have increased the dose of that lasts all day. The previous dose faded in the evening so by TV time I was pretty uncomfortable and annoyingly demanding for Maria – hot water bottles, cushions,  cat on lap, cat off  lap. I take one other dose that lasts all night. I think it’s the drug that has the most anesthetising effect because I do tend to drop off frequently during the day. I also take one dose of gabapentin per day and one at night. I am wondering if the gabapentin which is a nerve agent may eventually be dropped but trial and error is the order of the day and in any case I have to be weaned off it slowly.

That means I can get through the whole day pain free as long as I don’t walk or sit for any amount of time.

Negative things: I stay in my dressing gown and pyjamas most or all of the day. Probably not good for the morale but not sure if I care.

I can’t walk or sit for any amount of time. If I sit in my studio and get involved in a project later in the day or the next day I may struggle a bit with back pain.

My brain is not functioning very effectively. I get confused easily. I can do my German translation but I don’t remember the new vocabulary so it’s a pretty repetitive process but I still enjoy it. All this tallies with the effect of the oxycodone so I don’t fight it. I would rather have brain fog than be in pain so I just stop and do something else of take a nap.

Longer term – As far as improvements to the underlying condition I just don’t know. I have a meeting with my consultant in a few weeks but I am not expecting any great revelations. If this is as good as it gets I can live with this for a long as I get given and I will just regard as a sedentary opportunity and new chapter in my life. I don’t need to keep repeating this but Maria is totally on board with whatever comes to pass which gives me enormous comfort and almost normalises the whole thing.

One very positive thing is that because I spend so much time on sedentary pursuits which can easily be paused we have lots of time for chatting. I really look forward to our chats because it reminds just what amazingly good friends we are. By no means do we agree with each other about everything but we can talk about literally anything and then stop and do our duolingo or discuss dinner or TV feeling refreshed and positive about whatever it was we talked about, she energises me and makes me feel good. Aren’t I lucky.

Tecchy stuff best avoided. I am yet to be convinced that anybody read these so why do I write them. I think it might be showing off

My other drug apart form the actual drugs and translating german is, and this happened before, when I last had a course of steroids, buying stuff online. It was lighters and phones that time and it was much more obsessive with quite big sums spent. Other than the German books I have been buying old gadgets to optimise my studio set-up hoping that a day will come when I can use it again. I really enjoy doing this although it is the one thing that can so obsess me that I break my own sitting standing walking rules and pay the price the following day. It I so immensely satisfying to know that your set up will work what ever strangenesses you throw at it. My set up uses up to 5 computers recently reduced from 6 and runs 8 operating systems windows xp, windows 7 windows 10, windows 11, ubuntu 20, MAC OS 10,  and 15 as well as windows 7 on bootcamp – ‘what?’ you may say more OS’s than computers – Yes and only 5 screens. I have three switches to route different computers to different screens. This all stems from my reluctance to ever bin stuff that works because it has been superseded by a new version that may not. When I was working toward my PhD I amazed my supervisor by programming a whole series of apps to manage pauses in synthetic speech. He didn’t expect the arty farty bloke to be able to programme – to be honest not did the arty farty bloke but I put in the hours read the text books – copied code for hither and thither and managed it. The apps grew in complexity and while a professional programmer would call them amateurish at best, they worked sufficient well to demonstrate proof of concept, that was all that was needed so I am very proud of them. Here is my final and most elaborate app.

I think it took me about a year to make. Its long so skip to get to some of the more outlandish features which don’t really work in terms of delivering more liveness but are quite amusing to hear

There is one secret project that I can execute from the prone position which I am really enjoying doing now. I wont be sharing this until its nearer to completion but I am applying the principle applied by Dr. Ellen Langer and its working – it has changed my creative process although I had already been applying intuitively, this video gave my personal discovery legitimacy.

I don’t have anything else to say.