Sunday passed me by pretty much, I know there was football, food and flowers in the garden. Monday was little different apart from a bad gut. The overwhelming sense of the last couple of days has been one of fatigue brought about by discomfort. It feels a bit like a desert land, long expanses of arid dry sand with no life in it but I am sure that there were meaningful oasis of brain food and stimulation. It always seems the way of things that it is at these times that bloody EON want to hassle me to have an energy meter and the Americans keep asking me about producing an audio book of one or all of my currently published collection. There are lessons to be learnt as well. For example the benefits of having slip on slippers that do no need me to bend down to get my heel into them are a real luxury and make life that little bit easier. I am very aware that people are getting on with life around me while I feel that I am stuck in the pit lane while the mechanics tinker with my engine and change my fluid levels, or at the very least I have pulled into a service station and found that I cannot get back on the motorway to continue my journey. The biggest issue is the inability to concentrate for any length of time and to be as creative and adaptive as I usually am. I think the normal me would be drawing faces on my leg bag and thinking up names for it, like Koala Piss Pouch or Pissy McPiss Bag but I seem not to be inspired. The restriction that I feel is there is noticeable when I think about writing so I may go for making something on audio again. The desperate element of all this is how my energy just falls off the edge of the cliff in the evening yet despite this when I get to bed I have trouble getting to sleep. There is a lot going on in my head about the anxieties of how the removal of the catheter will go on Friday. Its the day before my birthday and for the removal to go well would be the best possible birthday present. I long to get back into normal non lounge clothes and to go out and to be able to drive comfortably. Most of all I want to be able to get back on the rower and get myself on the road to fitness again. I’m desperate to get rid of the weigh that I have gained and to restore some basic fitness.

Its Tuesday and my partner has gone to work so I have a slow waking and lazy rising. Eventually I get up about 10:30 and make breakfast, which gets eaten to a background of the TV news and then Wimbledon. Felling slightly more chipper I clear the kitchen and then begin to draft the blog, having not been able to get into my website yesterday due to a technical problem at the providers end. By lunch time I have caught up and begin to plan for the rest if the day. I have a burst of energy and mend the broken foot on the patio table, (super glue and gaffer tape of course) and then I check my car will start without lighting up fault lights. To my relief my car starts up and is in good fettle. While I am on a roll I put the bins out or tomorrows collection. Next on my list is a shower. Its a high energy sapping activity especially when I include a good hair washing given the length of my hair now. By the time I’ve had my shower got dried and sort out I am out of spoons. Feeling fresh and clean I return to the recliner in the lounge.

Just as I am settling into resting a friend rings and I am able to have a chat. We catch up with how we both are and how our families are. Its a pleasure to be able to talk to someone who is not in my household, it helps to keep my situation in perspective. My partner returns from work and we move into the evening watching a football match, eating and then watching all the remaining episodes of S.W.A.T available on Netflix. By the end of the evening I’ve nothing left except to finish off todays draft blog and to take my night meds before heading for bed, having gone through my pre-sleep routines. I’ve just got two and a half days and I will hopefully be free of this bloody catheter, and all the paraphernalia and discomfort that comes with it.

Saturday and the co-codamol I took last night did the the trick and got me through the night after I had crashed out. My partner came into the spare room (or Roland’s nurture room) for our usual Saturday morning chat and drink. As a family we are handling a lot at the moment so having time to talk and reflect lie this is crucial. While I go through my getting up rituals my partner makes me a bacon bagel, a Saturday treat, which I eat in the lounge. Today is drug wallets day. I have all my medications out and my drugs wallets opened so that I can prepare my pill intake for the next two weeks. Its a tedious and slow job but one that is helpful in making sure I keep everything on track. I have a nagging headache which I am becoming more aware of as the morning goes on so I eventually turn off all the screens around me and take some paracetamol. Alexa plays me meditation music and I let myself drift in and out of sleep while the pain killers get to work.

My doze takes me to about two o’clock when I wake up feeling a bit more human. Having indulged in a fondant fancy, made myself comfortable and recorded my output I settle down to draft the blog. My partner has gone for lunch with an old friend. My inactivity has meant that I have not written or recorded letters to friends recently. I do not like this feeling of inattention to my friends, it feels as if I am being lazy and not making the effort that relationships require. I thought about writing an open letter here but it is not what I think I need to do, which is to make the effort and either go to the Shed and write or record more audio letters. While I am thinking about this I get the news that my youngest grandson is being discharged from hospital today. This is great news and means the family, who have all been ill over the last few days can finally be back together again.

The day continues with a first draft of the blog and some thoughts about writing something. There is an unread quarterly poetry review yet to be discovered and some thought to the difficult question of what I might want for my birthday. I am truly lucky, I have a garden and a library of books. I am loved and cared about: what more could a chap want. On reflection celebrating my birthday at this age is less meaningful than being recognised on Fathers day. Being alive is relatively easy, the alternative of not being is nothing, or will be nothing to do with me, however being told that I am loved as a father and a grand father seems to be a more valuable acknowledgement of what I’ve done with my life than just being born. So I am coming round to the idea that I would scrap birthday celebrations and celebrate parenting days as being more meaningful. Of course those without children or families could go on celebrating their own birthdays as achievement or growth days, perhaps even survival days. Alternative perhaps birthdays should become “birthing days” where everyone involved could acknowledge the process of the creation of new life and all of those involved, it would include ancestors and deceased parents. It feels that this would provide more “depth” to the celebrations. Our house has a spirit home outside it. I put it up after a holiday to Thailand, where all the houses had a spirit house outside to house the spirts of the families dead ancestors. I am not sure why I did it at the time but now I kind of get it. It acknowledges the continuity of family and the interconnectedness of family members, past, present and perhaps those to come.

All of the above is all very well and fine but does not answer the question “what do you want for your birthday”, or perhaps it does. Perhaps all I want is to go on feeling loved and cared about and that does not need presents and cards, just inclusion in peoples thoughts and actions occasionally. By mid afternoon my youngest grandson is out of hospital and back home with his mum and dad. It seems everyone is tired and in desperate need of as much rest as possible.

I grab a bite for late lunch and prepare for the first knockout matches in the European Cup this evening. First kick off is at 5 o’clock and then another at eight o’clock. This is where things get tasty and go all the way to penalties occasionally. No doubt I shall droop as the evening goes on. As it turns out that is exactly what happens. I take my night meds and fix myself up for the night and try to get some sleep.

Friday and I find myself up at 5 o’clock unable to sleep. I get up and go through my new rising routine and go to the lounge to see if I can nap before the day starts. For a couple of hours I doze fitfully. I eventually shake a leg get into so day clothes, take my morning meds and have breakfast, which my partner made for me. I am feeling fatigued so try to activate myself a bit. My first stab at this is to read the meters and submit the readings for June. A small task but a start. Once again I get hooked by The Post Office Enquiry where the Fujitsu expert witness continues to be scrutinised and chopped into small pieces. Of all the decisions I took when I was working, staying away from going into court and trying to mix it with the lawyers was a very good one. Part two of trying to get going was to begin the drafting of the blog.

I’ve blown it. It’s 10pm and I’m knackered. I’ve done some odd jobs but mostly tried to rest, but I’m still so tired. I’ve already taken my night meds and end the blog for the day.

Thursday arrives and its been a reasonable night. I get up after ditching the night bag I make breakfast and settle in on the recliner in the lounge. I watch the Post Office enquiry chew up and spit out a Fujitsu witness and listen to some odd radio programmes. God I’m bored and listless, in truth I’m not sure what to do with myself. I am just constantly uncomfortable and I’ve another eight days of this mixture of frustration and confinement to endure. I am sure I am not easy to live with in this state as I get more and more fractious and discontented with myself. Its difficult to engage with anything in this state and difficult to maintain focus on anything.

I have lunch and make an attempt to write something as a change to my routine. Its a painful process so I decide to try and get some time on the patio. Just sitting on an ordinary chair is a challenge but after some comfort arrangements I fire up the laptop and type up the poem I drafted earlier. Its a real struggle to be out on the patio and in the end I give up and go back to the lounge recliner and draft the blog. I add my effort to write earlier today.

399
So it appears
a pipe up the prick
stunts poetic urges.
Nine days after Uluru
is crushed to dust
and passed through plastic
I am a slave 
to catheter and bags.
My new found 
nautical gait impedes
along with a sloshing
calf.
It all sounds flip 
and fun
but the fitting in
and fixing to me 
was a night of trauma
as eventually the surgeon
mutters “got it!”
and I am bailed out.
All the horror of Jamaica
came flooding back
and once again 
I become medical flotsam. 
Slowly I wash up 
on beds of protection
and beaches of pills.
So days become
drainage and disposal
against a vista
of unexplored radio
and television gruel.
I’m stuck like this
where seven days 
becomes seventeen
before I get my chance
to prove I can pee 
free style,
and I can get back
to battle the cancer
that remains,
lurking and leering 
at my discomfort
and hoping my energy
has been leeched.
No chance sucker!
I’ve got clown pants
and athletic strapping
so I will be out
and about. 
Beware!

						399 21-06-2024

So I slide into the evening distracted and once again listless, I’ve got eight days of this, while other family members are ill and struggling. Its the fact that everything is such an effort and I become so spoonless so quickly that is getting to me.

Tuesday and it was a bit of a pig of a day with one or two bright spots. My night was uneasy and I woke fairly early, but I had managed to avoid taking any co-codamol. I got myself up and dressed and then started the process of organising my life as well as I can. I get a phone call from the TWOC (Trial Without Catheter) nurse who cheerily tells me that my TWOC will be on fucking July the 5th! Really!. I explain that I was told that I would get a TWOC after seven days and was only provided with enough bags to last me ten days. All the nurse at the other end would say is that they are busy. “So where do I get the bags I need”, I ask,” you can collect them from the hospital” says the nurse. When I tell her I can’t get to the hospital I get the medical shrug and “tough shit”. So I am left with nothing.

What followed was me phoning every number on my Urology and catheter care paper work. I start to source alternative sources and ringing my local chemist. I get referred to all sorts of people including suppliers who tell me that they only supply goods in ten week blocks! My local chemist does not stock them but will get them in if I have prescription from my GP. On ringing my GP surgery the receptionists is unsure and asks if I have product identifiers. I do have the labels from the packaging which they then ask to see. I am by this time at my wits ends and when my partner suggests ringing someone else I just loose it big time. My partner takes the packaging to the GP but they need to talk to the doctor, so I still did not know where I was. I buy stuff off Amazon and then try to relax on the lounge recliner for the rest of the afternoon till there is football to watch. A friend rings me and we chat about how work is going for her and how her family are. It is good to be able to chat to someone outside my immediate family. By now I am feeling physically and emotionally exhausted.

I spend my evening watching football mainly England playing like schoolboys against professional players. As soon as they managed a dull, drab and miserable draw I went to bed, took my night meds and tried to sleep. All goes well, I do take a co-codamol at one point. At 4:30 am I wake up and find that my leg bag had leaked! I empty my night bag and fit a new 7 day bag and strip the bed and get it all into the washing machine. I end the night on the recliner in the lounge fitfully sleeping and inwardly desperate.

Wednesday and I finally wake up achy and tired. My partner has hung my bedding out and I have ordered a new mattress cover. I go through my waking routines and get breakfast. My partner tells me that the doctor has sent the prescription to the chemists so the things I need will be available to collect tomorrow. I settle down in the lounge for the morning until my partner goes to see her mother with her brother. An email tells me that someone on the writing course that I went on some time ago is having her book published. There is an invite to the book launch in London, obviously I will not make it but I pre-order my copy of Prospects by Kate Wilson. Once it arrives and I read it I will let people know what I think. I watch more of the Post Office Enquiry and relish how the lawyer picks apart a Fujitsu so called expert and their role in the prosecutions of the postmasters. They adjourn for the day and I start to draft the blog while the tennis at Eastbourne provides the backdrop.

My evening is football and S.W.A.T and the Tesco order. I think about writing but I am so distracted by my need to manage myself that it is hard to find words or inspiration that I can capture. The Americans have tried to ring me a couple of times but I cannot face them at the moment so I’ve emailed them and told them I’m recovering from my operation and if they have proposals for an audio book to email me. They just want my money. I prepare for bed, it takes a while at the moment. With my meds inside me and me rigged up for the night I publish the blog and try to sleep. Tomorrow I might make another YouTube video, or try to spend time on the patio

Sunday, and I try to get up and about to be able to see my youngest grandson before he and his mother leave for home. I just fulfil this before they leave. I spend a large part of the day on the recliner in the lounge watching endless Poirot reruns until there is football to watch. By the time the football ends and sees Scotland crash out of the competition to a last kick of the game goal I am spoonless and retreat to bed. I go thorough my now familiar night routines of fitting a night bag, taking my meds and settling down early knowing that at some point in the night I will take more co-codamol to aid my sleep. This is what happens.

Monday and its 28 day injection day, which means I have to make it to the GP surgery by 9am. I am on a mission. With what energy I have I get up, take my meds and sort out my night catheter bag then comes the big challenge, having a shower. I remove the restraining straps and and get myself into the shower, slowly and carefully. I am fully oiled up with the anti bacterial shower gel the hospital supplied when the shower stops working and flashes LP at me, meaning the water pressure is low. This happens if the mains water is run somewhere in the house. The LP sign persists and in the end I go to the down stairs shower, fed by a hot water tank and not the mains to finish my shower noting that the washing machine is on, hence the LP in the other shower. The whole process is knackering.

Eventually I finish my shower and get back up stairs to change into my going to the doctors clothes. I choose training undergarments from my gym kit as they provide the right support and means of hiding my pipe work. With these and a little gymnasts self adhesive strapping I am able to get mobile under some normal clothes. There is time for toast and water before my partner drives me to the surgery, where I book in and gingerly take a seat. When the nurse calls me I have to get my partner to give me a hand to get off the chair and walk with a very nautical gait to the nurses room. I am soon jabbed with my 28 day regular injection and as an added bonus today I get my three monthly B12 jab in the arm. Then its home. I not that the mock orange is now in full bloom and smelling sweetly in the warm sunshine.

I nap for an hour to recover from the mornings efforts and then I start to do admin. There are numbers to ring to follow upon my TWOC (Trial Without Catheter and not as I always knew it: Taking Without Owners Consent, the most common car thieving offence). The trail of numbers that I call eventually leads me to an answer phone service where I leave my details and enquiry, they say they will get back to me, I wonder if they will. I move onto prodding the Hippo Bag company to come and collect the waiting Hippo Bag that they said would be gone by now. I chat to the chat bot who promises to email me back, at least I can see my collection is still pending on my account. With lunch time looming the post man arrives with my quarterly Poetry Review to be quickly followed by another delivery man. The late brings a surprise. A fathers day present from my youngest daughter and her son. Its a zip through hoodie with a photograph outline of me and my youngest grandson cuddled up together on the sofa with a message embroidered on the sleeve. I love it instantly and message my youngest daughter to say so.

Lunch time arrives and its time to do my routine comfort making process before a bite to eat. I eat lunch on the patio with my partner and do the crosswords but after a while I feel uncomfortable and return to the house. I retreat to bed to doze, which I do fitfully and as the afternoon continues my usual post 28 jab pain starts to kick in. I try to relax though it but eventually I resort to co-codamol. As I wait for for the pain killer to kick in I revisit the blog and note I have have had no response from either the TWOC clinic message line or the Hippo Bag chat bot with its promise of an email. I’m tired and feel myself loosing energy all the time. This is all I shall manage on the blog today, I need to rest and get myself comfortable and pain free. It could be a long evening and night, perhaps there is poetry in there, it feels beyond me at the moment.

Friday, was a day of joy as I got to see my youngest grandson for a while, blow him bubbles in the sunshine on the new patio. The rest of the day I spent managing myself and watching football. Its not exciting but it is a phase I need to get through. My world has become more confined so less interesting, so feeding my head has become more of a tricky task. Thankfully I have found Radio 4 and 3 again, with gems like the News Quiz and the afternoon concert.

Saturday and after a night of co-codamol sleep I surface and drop into my self maintenance routine. I am getting listless and want to get rid of this damn catheter as soon as possible. I distinctly remember being told I would get a letter with an appointment to go back to have my catheter out in a weeks time but as yet no letter has arrived. I suspect I will be ring the ward at some point soon. Of course Monday is my regular 28 day injection day, which is booked in with my usual organisation. So there is going to be some juggling to be done. It would seem that life has a quirky way of finding new ways of making life just a bit more difficult, to whit I discover whilst having breakfast that I have a filling that has disappeared. Whatever the process is, it has impeccable timing. By lunch time I am organised enough to think about getting up and having some sunshine patio time.

The afternoon is taken up with lounging and managing myself while the garden guy mows grass and puts pots back in place. My youngest grandson plays with the family until his early bedtime. About the same time I retreat to the spare room to rest and watch the final football game of he day, then its my new bedtime rituals, night meds and an early night. I am going from hour to hour trying to keep myself comfortable and pain free. As always tonight I will hope for sleep and assist it at some point with co-codamol. I realise the blog is hardly up lifting at the moment but it reflects the grind that things are at the moment. I keep telling myself that this will pass, I really hope it does.

Thursday and I wake early after a patchy night but at least my catheter management is back on track. I spend time just trying to snooze before I get up and get my breakfast, which I take back to bed. I get myself organised gradually surrounding myself with the things I need to keep occupied for the day. I am still feeling exceedingly groggy and lack any real appetite so I doze and begin to do some of my ritual things. I do my vitals and find they are still good, to my surprise. I start to prep for the blog. My morning passes till I get to football time and the early match. Of course I watch and before the England match I download some of the pictures I took at the hospital.

Now too tired to write any more, all I want is sleep.

Tuesday and I have survived an horrendous night, thankfully there was morphine and some drifting sleep. I was woken at about 7:30 for my vitals to be taken by an apologetic but kindly nurse. All around me were men like me laying in beds and trying to rest and deal with their particular package of woe. The guy opposite to me was desperate to leave but had talked in his sleep all night and every time he fell asleep again began to talk again. Others like me were desperate to sleep and to be able to leave. I get offered breakfast from a trolley and select cornflakes and a yoghurt as it is all I can face. Not long after a crew arrive to make my bed, which I was grumpy about as it was changed at 3am. not long after 8am the consultant does his ward round and is surprised that I did not have a catheter put in during my operation but the bottom line is that I can go home once the paper work is done, which will be by 4 o’clock in the afternoon. I try to sleep but hospitals are noisy places and I drift in and out with a real post morphine downer and I feel absolutely exhausted. I do manage chilli concarni for lunch and another yoghurt. My vitals are checked several times adn to my surprise they are all spot on. Spot on is definitely not how I felt. All day at regular intervals a nurse comes and empties my catheter bag and records my output. One nurse comes and gives me a lesson on catheter maintenance and another delivers me a bag of bags to see me through the coming week before they have me back in to take my catheter out. My partner has not been well but she arrives at about 4 o’clock, all I need is my release papers and as luck would have it they arrive quickly and I am able to leave. My partner drives me home and I try to rest. There is football to watch but I am exhausted and distracted but I have to sort out my medications and get to grips to sleeping a full night with my catheter. I take myself to bed and hope for sleep.

Wednesday and I wake up after a better nights sleep, I seem to have managed myself quite well. I sleep as much as possible before getting up for breakfast on the patio with my partner and then my eldest daughter. My eldest daughter and I chat for a while before I retreat to the recliner in the lounge. I’m so tired I doze for long periods of time while my partner and eldest daughter go out for a while. I am drinking water and my biggest challenge is over coming the constipation that the morphine induces. I doze and doze making myself comfortable from time to time. I watch a football match, eat pizza and then draft the blog before watching Scotland play football. Its going to take me a couple of days to get myself fully organised and begin to feel better but for now I will settle for sleep and not needing to take any pain relief. Today is the fifth anniversary of my prostate cancer diagnosis. I’m still here, still fighting and still Rocket and I battle the cancer, now that my bladder stone is no more there is hope I can keep fighting for longer.

DAY FROM HELL. BLADDER STONE REMOVAL ALSO KNOW AS ULURU’S REVENGE.

ITS BEING A BASTARD OF A NIGHT.

AND NOW iTS A MIDNIGHT CATHERTER., FAILED

3 O”CLOCK SURGEON AND CAMERA FINALLY GET CATHERTER IN. 4AM MORPHINE

EXHAUSTED, BUT SLEEPING AT LAST.

ALWAYS