Friday, this was a day of preparation in readiness for the visit of my youngest daughter, her partner and their son, my youngest grandson. It is all very prosaic stuff like cleaning, washing wrangling and shopping. Mundane but necessary, which always takes longer than hoped for and is more tiring than it ought to be. So be the time the house and fridge are visitor ready the evening is one of para Olympics and TV before a retreat to bed and the hope of sleep. I take my night meds and affix my nasal strip in the hope that I shall beat off my recent insomnia. Is it a real effect or a placebo, I ‘ve no idea, just want to sleep better.
Saturday and I have slept better, my partner is already up and preparing things for the arrival of our guests. Cars are moved and food prepared. I make a breakfast and then wait. The post man delivers and there is a letter for me from a friend who has read the blog and comments on my latest brush with the nhs in a sympathetic and witty way. Our guests arrive and the house is instantly transformed by the presence of a small person who can now haul himself up to a standing position, as a consequence many items are immediately elevated by at least three feet. The day is spent playing and eating and having conversations that only families with young can have. Activities are fluid as the entertainment and wonder is constantly changing. It is amazing what one rapidly developing new universe can have on an entire family. People dip in and out, take rests and take turns but some how everyone contributes in some way. At a magical point in the evening the young one goes to cot and the adults, with one ear on the baby monitor watch a film together and then one by one drift off to bed. I am left to watch the football high lights, but I do not get the end, I take my meds strap on another nasal strip and go to bed reflecting that my diet today has not been the best, but I seem to fall asleep.
Sunday arrives, its the first of September and my partner’s mothers birthday and the plan is that we will surprise her with an afternoon party. Cakes and goodies are ready. I wake and do my vitals, that are good, and I am treated to a bacon sandwich in bed before I get up and get party ready. My youngest daughter is asleep with her son draped across her on the recliner in the lounge, I am guessing that sleep may have been interrupted last night. My own sleep seems to have been better, perhaps the magic nasal trips are doing something after all. It will take a few more nights to know. I suspect that not taking angina meds that give me a blinding headache and having a rest from my cancer pills maybe, just maybe, giving my body a rest. I am still very fatigued but that I can understand and find ways to cope with. As everyone is taking the opportunity to rest while my youngest grandson is asleep I try to catch up with the blog. Of course much of the last two days has passed my short term memory by and my long term pixies have not bothered to pick them up, I just assume that anything crucial would have been snatched out of the daily stream of the mundane and carefully stored. That’s probably a dangerous assumption but I cannot possibly know or remember what I never remembered in the first place. I guess that is how fantasy comes about in part, thinking you remember something that you never did.
The afternoon is spent amongst family celebrating my partners mothers 96th birthday. There are small children to a great grand mother all together being who they are. There is cake and conversation, a lot of catching up, sharing of recent history and requests. I am asked to sign one of my books, that comes as a surprise. So the afternoon goes by, and there are some lovely moments of children clapping fairies, falling over to find a soft spot on the lawn, and general exploring and making new contact with new members of the family. Eventually people drift away and I help clear up the debris before heading home. Once home there is a film to watch and then onto the para Olympics, where the Brits actually start to win medals at the athletics. I am now tired and will drift towards bed, but before going there is something to add to todays blog, which is important to me.
TODAY IS THE FIFTH ANNIVERSARY OF THIS BLOG! For five years now I have written this blog to help keep family and friends up to date with what has been going on with me and my battle with metastatic prostate cancerand all the other adventures along the way. It started with a welcome and the experience of my pre chemotherapy induction day. There were no pictures or videos just a description of the experience. As I got more blogging skills I was able to add more content. The very first picture was of a sharps bin that I was presented with on the first day of chemotherapy.
The blogs very first picture.
Over the yearsthe blog has developed into a running commentary on my life containing all sorts of things I did not predict but also testament to the mundanity of everyday life that accompanies the day to day life of living withprostate cancer. It is true that I have experienced things I thought I would not live to see that have given me immense pleasure and there have been moments of grimness, but overall this blog has chronicled my appreciation of being alive and kicking. To all of you who have read my blog, whether regularly or just dipping in now and again I want to thank you all. Knowing that even if there has been only one person who has looked at my blog on any given day has been an immense support to me, especially on the more dark days when I wondered if it was worth it. So even now in this period of fatigue knowing thatsomeone has been to the blog and perhaps just caught up with where I am or got an idea for their next read or a film to watch, even to read the occasional poem is motivation enough to continue to write the blog. I hope I shall be able to write this blog for a long time to come and that you are kind enough to visit it at times. Once again, thank you.
Thursday and after a strange in and out night I wake and take my vitals, which are okay. I check my messages and the news before getting up and into my training gear. I’m soon strapped onto the rower and pulling away. At this stage of the game the goal has to be complete the 30 minutes and then get over the 5K mark. At the moment my best since restarting to row is 5,400 metres. Today I do finish and I do get over 5K but fall short of the additional 400m.
Not bad but I am functioning at about only 86%
I have breakfast and deal with the post. At last the date for my scan has come through, so on September the 10th I will be laying around having contrasting dye pumped into me. So that is some fun to look forward. I go to have a shower and find that our water pressure is down so I go to use the tank fed one down stairs. There is a delay while I scrub it out and then finally get to have my shower. Wrapped in towels I sit on the patio and chat to my partner and watch a woodpigeon build a nest in the hedge by the patio. Once dressed I return to the patio to tidy my beard and write the last poem for the next collection.
412 I’d like to write an epistle but it’s not really me, I’m more known for bony stuff without tittles, just a curator’s number. But somewhere in there is a cloud, a swirling entanglement of events that brings me to this fatigue. Five and a half years of cancer, five years of blogging every day, a DVT along the way and then a bladder stone has a say. Now the cardiac boys and girls Are chipping in with scans and medication I refuse to take; I cannot bear the headache, and all along the battles rages as I cling to reason and sensibleness, which amounts to denial, a life style of “not” and very little “do” until this damn fatigue overwhelms. I’ve no testosterone to drive me, no flushing chemical to stiffen the sinews and summon the blood. This greyhound falls asleep in the slips only to cry out “what’s for tea” and write breathless poetry.
412 29-08-2024
Apologies to Shakespeare for nicking a bit to Henry IV Agincourt speech, it just seemed apt. As the para Olympics gets under way with Brits falling off their bikes I start to draft the blog. Not many people bother with it now but as I move towards the fifth anniversary it is something that I will doubtlessly continue just to keep track of things and have for people to check in on.
I arrive to the evening via a chance finding on the drive. I go to put the recycling out and there on the drive is a letter addressed to me. When I open it I find a letter from a friend. It is a delicious surprise. The evening is all fatigue and TV before I take my meds, round off the blog and finally go to bed in the hope of sleep.
Wednesday and after a night during which I found myself eating a cheese and picked onion sandwich at about 3:30am due to some insomnia, I get my self organised and take my vitals. With a little procrastination I get up and make breakfast. I have a mission today as I have decided to pursue a new poetry project. The first step after having donated some poetry books to the local library is to take the necky step of sending a set of collections to the Poetry Review the journal of the Poetry Society. So I write a brief letter offering them for review or publication, or more likely FIBed. (Filed In Bin), wrap them in bubble wrap in an envelope and walk over to the post office and get them sent off to the editor of the Poetry Review. So step one compete, all I need to do now is wait for silence or a polite fuck off we don’t do that, or a very surprising positive acknowledgment.
Once home I get onto the patio and spend time doing todays crosswords. With all of them done without the aid of Google I go in search of the garden camera. I spot it where the tree team had placed it out of the way. The likely hood is that the batteries are dead. I make myself lunch and then set about down loading the contents of the camera. I am not expecting anything but to my surprise there is hedgehog activity. I thought that since I buried one some time ago that we had become a hedgehogless garden.
Alive and roaming my garden.
Having refilled the camera with batteries and replaced it in the garden I return to the poetry project. I check the contents of The Cancer Years: Breathless and put it into a Zip file. With that prep done I email my American editor/ project manager/ minder and tell him I am not doing audio books but he can make me an offer on price to prepare and publish the next collection. I will be interested to see if he rings me. With that done I start to draft todays blog while listening to yet another episode of Mark Steels in Town.
As my partner is going out tonight I shall watch the para Olympic opening ceremony and see that they have come up with. I’ve chosen not to train to day but hopefully I can get back to is tomorrow. The para Olympics opening was to tedious to bare for long, so I ended up watching football followed by Celebratory Race Across the World. I take my meds and tinker with the blog before going to bed.
Bank Holiday Monday and I wake up in the spare room due to my partner having a stinking cold. I make warm drinks for us both and go to see how she is doing. It turns out we are both tired and fatigued but she has the snotty end of the stick. After a lot of procrastination I get into my training gear and get myself to the garage, but not before taking my morning meds. It is a hard session, but I do manage to do 5K in the half hour. So after nine days away from the rower that included a night in hospital and my Monday jab I think I have done okay.
Given the last week this is not too shabby
What is a disappointment is that I fall short of a 100 points on my fitness App, I do some puttering to clear the kitchen and then I take my eldest daughter to the village shop to buy in vegetables and a paper. Its sunny and as a result the village is full of people come to see the scarecrow festival. Back home I sit on the patio doing to day crosswords until they are all done and I am strangely chilly.
I rest for a while as my partner and eldest daughter go to see the scarecrows. I got this far drafting the blog and just ran out of energy and drift towards the evening, TV and meds. This sometimes happens, my energy just stops and I cannot focus on anything to finish it apart from sleep. This is fatigue as it worse.
Tuesday and I have slept quiet well, I take my time getting up, taking my vitals and then making the decision to train again. I get my training gear on and do a few a chores before finally get into the garage and mounting rower. I just want to earn enough fitness points to get me over the hundred mark on my fitness App. I set off and want to get through to 5 kilometres. The session is quite good but tiring, the upshot of the session is that I make my 5K target.
I get my 5 kilometre goal.
Ultimately I want to get to 6K and to a 1000 strokes, but that is something I will not push, I will be happy if I can make it by Christmas. With the session out of the way I make myself a bacon sandwich and rest a for a bit. Once again I get myself going and go for a bath. Its a high energy use activity and I lay there listening to Mark Steels in Town. My partner, who is at work at home, pops her head round door and says my phone is too loud and goes back to work. I am beginning to think my hearing is not what it was perhaps that’s something else I should check out. I get to the crinkly stage and get myself up and dry and continue to listen to Mark Steel. I am very tired again and just spend time trying to finish yesterdays blog that I had to abandon as I just slipped over the energy edge early. Today is hopefully different in that my energy lasts a bit longer, especially as there is a Tesco deliver to take in.
It is now a week since my night in hospital and I am hoping that slowly I am recovering. I not only need to recover physically but also get back to feeding my brain. To that end I might contact the Americans to begin the process of getting the third collection in the Caner Years series published. At the moment I am minded to call it “Breathless”. As late afternoon approaches I begin to consider my evening and how I can get myself ready for the end of the week when my youngest daughter and son and partner are due to visit. There is also a family birthday coming up so I need my energy to see me through it. I get to the evening end, take in the Tesco delivery, take my meds and ready myself for bed. Tomorrow is yet another day to recover one step more.
Sunday and I wake up after a reasonable night’s sleep and importantly no headache. My partner has a cold so I am up making warm drinks and Lemsip. We spend time lazing before I take my vitals, which are okay. I get up and clear the kitchen and then have breakfast and my basic morning meds. Because I know I have limited energy I set to and prepare tonight’s meal and get it into the crock pot and set it cooking.
By the time I have done this I am already tired. I resort to laying on the recliner and listening to Mark Steels in Town until there is sport to watch on the TV. That is where I stay until the evening meal. My evening is all TV. I know this sounds appallingly sloth like and couch potato but this is a day of fatigue when my energy for activity ran out very early. Of course I do odd chores of life admin and follow the football results. There are occasional messages and emails to respond to but mostly I do my best to rest. My hope is to return to the rower tomorrow as my burst of energy.
At the end of the day I hold my nerve and keep to my basic meds and night time routines. In 7 days time I will have been writing this blog for 5 years, so I have started to think about how I might make the blog for that day special, perhaps I can write a poem or a collection of favourite books or images over the time. I am open to suggestions.
Saturday and I wake up with a partner with a cold. When I get up to make drinks and a Lemsip I am so pleased I took the time to clear the kitchen last night and get rid of the take way debris. We have our drinks and I take my vitals, they are okay. Up and dressed I start to cook a full English breakfast which will become brunch. I manage most of it except the grill catches me out and over does the bacon. However brunch gets done and with it my morning drugs. I am still not taking the angina pills and I still I remain free of chest/heart pain and I am free of headaches so I intend to continue. I am continuing to be fatigued. At about noon I watch a football match after which I accompany my partner to the village shop to get food. It is the village scarecrow festival but there are far fewer than the last few years. Our nearest exhibit is a magnificent spider.
This chap is guaranteed to give some children nightmares!
The walk to the shop and back has tired me out, I am still recovering from the weeks exertions at the hospital. I tidy up some life admin including the new oncology appointment that came in todays post and casting up my latest blood results. Today was the poetry stanza meeting, the in person one locally but I am just not up to attending, the fatigue is overwhelming. My hope is that on minimal mediation, just the blood thinner, relaxant and single night med, that my body has a chance to balance out for a while and I can get to grips with the fatigue on its own. I have no idea how this is going to go but I think its my best shot until the cardiac boys and girls have done with me.
So this evening I will eat tea and try to relax and rest. The aim is to get back to the rower on Monday and to to find a routine. In the meantime I shall try to stay relaxed, occupy myself and keep some activity going. Sleep is the great gift I can get right now.
Friday and I wake up and feel reasonable, not building leaping good but okay, so I take my vitals and my blood pressure is up a bit but I’m beginning to think “fuck it” lets crack on even its a bit more sedately, this is a new phase. I get up, dress and empty Daisy dish washer and clear the kitchen I then make a ham omelette for breakfast washed down with orange juice. First real decision of the day is whether to take the additional Relosorb angina half tablet. I have no chest pain and I do not want the headaches. I believe “he who made the pact with the devil” when he said he thinks the cardiac boys and girls made a wrong call, so I eschew the angina half tablet and take the risk.
With that out of the way I get myself ready for the short walk down to the village library. I ask my eldest daughter to walk down with me. A confidence thing really. I ‘ve discovered that the medical profession are really good at knocking the confidence out of me with their algorithms, artistic guess work and shroud waving. So just in case my eldest accompanies me. On the way to the library an urban tractor pulls up and a made up woman asks where the nearest supermarket is. After a bit of interrogation I find out she is on the way to Birdland and all they want is some food to take. Easy really, one of the village co-ops is on the way to Birdland. She clearly does not think the Birdland café can cater for her palate. When we get to the library I tell the volunteer behind the desk that I live in the village and that I would like the library to have three sets of my collections so far to either put on their shelves or give to people who might be interested, its up to them, but I did say they were not for the children’s section. The guy said thank and it was very generous of me and that was it. No flicker of interest unless he was just bemused that someone would so shamelessly advertise themselves or be so egotistical as to donate their own books. A bit like going on Desert Island Discs and choosing all your own work. Still I hope it does not create the conundrum as to what to do with them. My eldest daughter and I walk home via the village co-op to pick up a paper and fruit pastilles.
On a windy but sunny patio I do the crosswords in the paper until the breeze drives me inside to settle down to rest a bit more. I recalculate the days spent and the phases that the blog has gone through since I started it back in September 2019. Somewhere along the way I’ve lost 15 days, but what with holidays and unexpected events that’s not too bad. I start the draft of todays blog and choose a new Rocket picture to head up the blog. New phase, new Rocket, same old fight plus a new complication or not. For anyone interested I have included the Phases So Far below with the days in each phase, its indicative of the changing nature of the journey and the hop from one medication to another.
WELCOME ALL: 01 SEP 201 TO 01 SEP 2019 1 DAY
INDUCTION DAY: 02 SEP 2019 TO 02 SEP 2019 1 DAY
CHEMO DAY: 04 SEPT 2019 TO 05 JAN 2020 120 DAYS
FINGERS CROSSED PHASE: 07 JAN 2020 TO 23 MAR 2020 77 DAYS
AS GOOD AS IT GETS PHASE 1: 24 MAR 2020 TO 08 FEB 2021 322 DAYS
AS GOOD AS IT GETS PHASE 2: 10 FEB 2020 TO 21 DEC 2021 315 DAYS
ANTIANDROGEN: 22 DEC 2021 TO. 22 FEB 2022 63 DAYS
AS GOOD AS IT GET AGAIN: 23 FEB 2022 TO 31 OCT 2022 251 DAYS
ROCKET: 01 NOV 2022 TO 21 DEC 2022 51 DAYS
ROCKET BOOSTER: 22 DEC 2022 TO 06 MAR 2023 42 DAYS
RUN UP TO RADIO THERAPY: 07 MAR 2023 TO 17 MAY 2023 72 DAYS
NO MANS LAND: 18 MAY 2023 TO 29 MAY 2023 12 DAYS
REARMAMENT: 30 MAY 2023 TO 07 JUNE 2023 12 DAYS
REARMED: 08 JUN 2023 TO 09 JUN 2023 2 DAYS
CHEMO II: 10 JUN 2023 TO 18 AUG 2024 435 DAYS
ANGINA ADVENTURE: 19 AUG 2024 TO 23 AUG 2024 5 DAYS
TOTAL 1801 BLOG DAYS TO DATE
ACTUAL DAYS BETWEEN 1ST SEPTEMBER 2019 AND 23 AUGUST 2024 IS 1815 DAYS, SO SOMEWHERE OVER THE PAST 4 YEARS, 11 MONTHS 19 DAYS I’VE LOST 14 DAYS SOMEWERE.
DIAGNOSED ON 19TH OF JUNE 2019. 1894 DAYS OR 5 YEARS 2 MONTHS 6 DAYS.
So if I can hang on for another 10 days I can do a 5 year celebration edition of the Blog. I hope it has fulfilled its original purpose of keeping family and friends up to date with my cancer journey and help ease the conversations when they were needed. I also hope it helped and is helping family and friends to ask the tricky questions they want to ask. As for me it continues to help me capture my experiences and to remind me that I can live a mundane life with all the little and big gems that life has brought me over the last five years, there is lots to be thankful for that I thought at the start I would never see or achieve, whether it be new and developing grand children to, holidays I thought I would not have or that moment when my poetry actually found its way into the world. There is of course lots more but today I am content the sun is now shining and I have no headache.
The meanders into an evening Indian take away, a cute film, Gifted and another episode of Freddie Flintoff’s Field of Dreams, where he has taken a bunch of Preston lads on tour to India. It is touching and a surprisingly insightful. Finally I get my night meds down me and retreat to bed having got through the day without angina meds and a headache.
Thursday, I wake up with my partner gone to work. I laze by doing my vitals and catching up with messages and emails. I get a phone call from the prostrate nurse trying to confirm the names I left on my message call. I was still in bed and really had no Scubby Do what they were, but got through the call. My vitals were surprisingly okay so I get up clear the kitchen, shove the washing in the dryer and finally get breakfast. I take my meds including half a tablet of Relosorb XL(Isosorbide Mononitrate), and pretty soon I’m feeling shit, one of the side effects of Relosorb XL is headaches, so its trying to manage that with or without paracetamol. So as noon comes round my plans to visits the library or the village shop/café go out the window.
The post arrives. It is all for me from the nhs. The first I open is another copy of my discharge report from the cardiac assessment unit, I guess it is handy to have a copy, however the second one is for a face to face appointment with the oncologist on Wednesday 21st August at 11:30! In other words yesterday, so that explains why the oncologist rang me at at 5 o’clock yesterday. Am I being picky, but I would have thought that expecting the mail to get to me in time displayed incredible faith in the postal services and secondly who in there right mind would think I was in any condition to return to the same hospital the day after I had been discharged from in a knackered state of fatigue and confusion as to what the fuck is going on for me. So both my letters to me were useless. I resort to the blog to keep my balance. I know I need to keep active to counter the fatigue and tiredness but the meds make me feel shit. I have no idea if its the combination of current meds without my daily cancer pills or the addition of the Relosorb XL. So I am a prostate cancer patient and a cardiac patient with little joining up of the dots as far as I can tell. I am still on Apixaban, a blood thinner with the addition of the Relosorb which is supposed to dilate the blood vessels and relief chest pain by making it easier for the heart to pump. Are these compatible? I have no idea. What would happen if I stop the Relosorb to avoid the headaches? In the meantime I just try to muddle through.
I use the afternoon to edit the first draft of The Cancer Years: Breathless. I update the bio, the acknowledgements, the contents and the dedication. I run out of energy and indulge in watching the first ever Star Wars film which by the end of I am exhausted so take a nap. Post nap I try to get myself going so I go into the garden and fill the bird and squirrel feeders. My partner returns from work and we sit on the patio and catch up with our days and things in general. As we get cold we go inside and later eat tea. The evening is filled with a film and then Freddie Flintoff taking his cricket team of Preston lads to India. I take my night meds minus my cancer pills as agreed with the oncologist. I am hoping that my body will settle down and I can get into some sort of balance. I draft the last bit of the blog and go to bed hoping for relief.
Monday and it starts with getting up and walking down to the village chemist to collect my meds. That goes okay but by the time I am due to walk down to the GP surgery for my 13:20 jab appointment I am breathless and shaky, so much so that my partner drive me down and waits for me. I get called in to the nurses room and she prepares to jab me, which she does but notices how breathless I am and asks a doctor to see me. My GP is very concerned and rings the Cardiac Emergency department at the local hospital My partner drives me home, helps me pack what I need to stay in and drives me to the hospital.
And so the Angina adventure starts. I present my self to reception and get told to take a seat, they already have labels printed for me. I and my partner take a seat on the hard plastic chairs along with several other people. I look around at my surroundings. Quite stark with a few postcards stuck to the walls and typed notice under the television that is off. Its 14:25.
No motivational posters here just postcards, very nhs.
The information I needed to know, whilst not watching television.
Its the red small print that is the heart sink info.
I get called in and I am triaged. Measurements taken and lots of questions asked, bloods taken and then I am back on the bloody hard waiting room chairs as we and the medical staff wait for the results to come back. In the meantime people who stated out at 9 o’clock in the morning at another hospital across town have been ambulanced over, so those poor bastards are at least 4 to 5 hours into this stuff already. From this point onwards time may become a little confused, I can only do my best.
My partner and I, we wait and we wait and we wait We get food from the little café stall in the hall way and we picnic, the decaff coffee making my partner feel really odd. We resort to playing “squares”, which is one of our ways of coping with waiting in emergency situations. I make a grid of dots in my journal (yes of course I took my journal of my ins and outs with me, I’m organised!)
It never got finished as the doctor called.
The doctor called us in and spent ages asking me questions about how I felt, my history and what was going on for me. He says my bloods are normal, there’s a surprise. So the upshot is that they are going to scan me. I go back to the waiting area, where no else seems to have moved. After a while I get taken over over to a scanning room where a lovely lady lays me on a bench and runs a probe over my chest in a sort of Star Trek way, all the time talking to the doctor who had initially seen me pointing out the bits of my heart and speaking medical lingo hoping I would not understand. Apparently there was no signs of some thing but there might be a bit of “misalignment”. I of course get returned to the waiting room, only to be recalled with my partner later. The nice lady says it could be mild heart failure or angina she cannot tell which without a more clear and advanced scan. She thinks she is going to send me home so that I can be called in as an outpatient to get it in two weeks. The Cardiac Assessment Team have turned her down for a bed. Then she says I am “atypical” which for me appears to be a theme, all my arithmetic is good but am clearly exhibiting all the symptoms of fatigue, breathlessness and the other things that someone with mild heart failure or angina display. Suddenly she says I’m not happy with this give me a few moments and goes of to talk to the Cardiac Assessment team again. She returns and says your staying in, you have a bed. Mark those words carefully, you a have a bed!
Its now about 6 or 7 o’clock. The doctor walks me and my partner over to the Cardiac Assessment unit, I’m expecting to be met and taken to a bed where I can rest and be attended to. The rational for me staying in was that this would short circuit the two week wait for the advanced angiogram, that I would spend one night have the scan get a proper diagnosis and not need to wait two weeks to get the scan. What I actually walk into is a reception area packed with couples all waiting to be assessed. When my partner enquires what is going on she is told there are no beds available and it is going to be a six , yes 6, to eight, yes 8, hour wait for a bed to be free. I feel like I’ve fallen into a Kafka nightmare, having been given an aspirin and a “Cholesterol pill” before being shunted off to this cattle truck of a waiting room. My partner declares it a third world service. I find a recliner at the back of the room feeling truly shit.
If ever there was an oxymoron this is it!
I think it must have been about 9 o’clock when I told my partner to go home, there was absolutely no point in her waiting for me to get a bed she might as well go and get some rest I was not going anywhere soon and all I could do was wait. It could be any time between now and the morning. She left and later told me that she had got home safely having found her easily in the vast hospital car park, it was the only one!
During al this I had left a message for the specialist cancer nurse to say I was being admitted adn that I would not be taking my cancer pills and for her to inform ” he ha made a pact with the devil” and to give me advice going forwards. On the stroke of midnight a nurse approached, called my name and escorted me to the Clinical Decisions Ward bay T9, where there was a bed onto which I flopped.
Tuesday starts at midnight with me popping to the toilet to change into baggy pyjama bottoms and a Star Wars T shirt with ” I am your father” emblazoned below a head shot of Darth Vader. In my innocence I thought I would be left alone to sleep until seen by the doctor, an angiogram ordered and done and then some sort of diagnosis from which I and the medical world could proceed. How stupid could I be. At a quarter to one, that’s 0045 my vitals are taken and I am interrogated again and given something, no idea what because by the I could not give a shit all I wanted to do was sleep as I was extremely fatigued and yesterdays 28 jab site was getting sore. I buried my self into the bedding and began my sleep rituals and then became aware that I had been brought to a place Hieronymus Bosch would have been proud of. It would appear that Milton had constructed an additional layer of hell. Every one who was wired up to a vitals monitor was responsible for a continuous beep or chirp, it was like trying to sleep in the middle of a flock of electronic owls. Add to this the fact the that the guy to my left clearly was not at all clear about what was supposed to be happening and kept engaging the staff in conversations that ranged from lucid to tangential to say the least. To my left was Norm, a lovely 92 years who was having none of it and would be off at the drop of a hat still wired up to his monitor. I got quite fond of Norm, had to respect his indominatable spirit. To this has to be added the blazing illumination of the nurses station, the constant staff chatter and the random turning on of bay lights that accompanied whatever routine vitals were being run on whichever patient, at one point it was like a disco. At one point all the bay lights went out but the noise level from the nurses station coupled with the bloody electronic owls was incessant. I would defy anyone, who wasn’t pissed or drugged out of their heads to sleep in this environment. Given I was extremely fatigued, hungry, in discomfort and probably a tad concerned about being breathless and having been told I might have had mild heart failure or angina I cannot think of a better environment to make me more exhausted or to induce full blown heart failure. I was desperate. I then remembered I had my ear buds in my bag, what a stroke of genius that was to put them in my bag. I fished around and found them, plug my phone charger into the phone and the sockets above my bed for serious medical equipment and listened to Hungarian night on radio three. I did not sleep but I heard some lovely music and best of all I could not hear the bloody machines bleeping like some fiendish water torture.
It could not last. At 7 o’clock there was the news on Radio 3 followed shortly by the ward being woken up for vitals and the start of the hospital day. In what universe the day had been deemed to stop was any bodies guess. Droves of staff appeared for change over, they wandered round the ward exchanging information and numbered i-pads, I assume I had one on me. As they stopped by my bed, a nurse said ” this is Ronald”, Oh no its not, I say it Roland and realise that they had got my name wrong above my bed. I discovered over the coming hours that nursing staff seem to have difficulty Roland, particularly the Asian staff. This was definitely not a one off as it happened several times with different Asian staff. Fair do’s really I could never manage some Sri Lankan names of work colleagues at on place I worked at, but then I am dyslexic and names are not my strong point.
The breakfast trolley arrives, cornflakes and toast for me. The toast having been done by the toast monitor for the day. There then followed a very long time where I was ushered off my bed in to the chair next to it where I listened to Mark Steels in Town. I listened to several episodes. I’ve also managed to keep Norm from wandering off a couple of times and got the nurse to come to him. For 92 he can be pretty nippy and if not careful pulls all his wires out or drags the monitor with him. I am desperately tired and so I write in an attempt to keep going so about 11:30 I write this:
411
I feel I must write perched on my hospital bed after my latest fright. It would appear my heart has played a trick or two to over come my rampart. This plummet into purgatory and Kafka like night has redefined the horror story. All night the beep machines persist the misery of no sleep like some dripping Chinese torture, its my sanity it reaps. My symptoms are extreme fatigue but the chirping tossing room is painful beyond what I can believe. I cannot believe I'm trying to rhyme. Bosch would be proud of this Dante add an additional ring, so much care with so many unforeseen ill consequences. I'm planning my escape, forming a committee of one but when it comes to it I will probably just do a runner, actually more of a breathless shuffle. I am eyeing the walker parked up across the way no one will notice in this chaos. Thank fuck for radio three and ear buds. Hungarian night has saved my head as I lay trying to sleep on my bed, damn I've tried to rhyme again that's so not me, its so tame. Enough, enough there is nothing to be gained. They serve lunch at the same time as doctors rounds! I fucking give up.
Yes they serve lunch as the consultant does his rounds. He gets to me. “No you have not had a mild heart failure, its probably angina. All your tests and x-rays are good. We will give you angina medicine and send you home. You will have an angiogram as an out patient. Good bye” Remember why I spent a night in hospital? Yep that’s right to get an angiogram quicker because I have the symptoms! It all been for nothing.
I wait for my new meds, have vitals done and settle down to wait my discharge drug and letter and my partner who is coming after 4o’clock. As I idle away more time the trolley woman arrives, a jolly, smiley person and as it turns out an observant person. “Roland would you like a drink? Of there are two Rolands, Oh there are two Roland Woodards!” She is right. Norm has my name above his bed. Really you could not make it up. No wonder the poor man has appeared confused if staff have been calling him Roland. The tea lady points it out to the team and it’s she who changes the name board on Norms bay. I check with a nurse that the bloods and scan that Norm have just had were not for me, I am assured they weren’t and I assume they did all the usual ID checks. My partner arrives and we chat for a while and Norm’s daughter and wife appear. His daughter looks at my name name board and says “are you from D….d”, to which my partner replies we are. “We live over the back of you, you just had your trees done, which is great”. There follows a conversation about the village and neighbour type things. I am now glad I heeded Gil Scott Herons advice, “If you can help someone along the way why wouldn’t you”. Having shepherded Norm to safety a few times and got the nurse to him sometimes he thinks I am a friendly man. So we now have neighbours whose dad thinks I’m friendly, karma. Mind you he won’t have a clue who I am today even though he was me for a while in hospital.
I have changed into my escape clothes and go to the toilet. When I come back there has been a major to do, Ed across the way has thrown his tea over the nurse. Trust me to miss the excitement. The heavies have arrived but it is de-escalating and things get cleared away. Ed has had no visitors and been sat in the chair by his bed all day and clearly quite agitated, I think he probably just got so pissed off he did not know what else to do. My discharge papers arrive with my new half a tablet a day meds and I am free to go. I say goodbye to Norm and his wife and daughter and leave with my partner. She guides me expertly through the hospital to the car park past the vapers and onto the car via the pay station. I am so relieved to get home. My partners friend is there. Fish and chips is the evening, its easy. I have few chips and go to bed. No beeps, no chirps, no chatter. It takes me a while and a couple of wanders to settle down but once I do sleep through to the morning.
Wednesday, I wake up and laze for a while, do my vitals before getting up, unpacking my hospital bag and making a fried sandwich for breakfast, I will deal with the alleged cholesterol association later. I take my meds and my new heart (half a tablet) and start to try and capture the past couple of days on the blog. I decide to rename for a period of time until the cancer stuff becomes clear, which it will do once I get the ASAP face to face appointment. It takes me until mid afternoon to catch up and I am tired and head achy so I intend to rest, perhaps nap and see how the day goes. But I will write no more today, hoping to be able to rest.
POST SCRIPT: My oncologist rings me at five o’clock and asks me what’s going on. I tell him what has gone on and he says he thinks its been a wrong call but he cannot interfere with the clinical stream they have decided. All he can do is contact them to get them to sped up the process of the scan. In the meantime we agree that I will stop my cancer meds for one month and then have a blood test before being seen by my oncologist. So my angina adventure will go on for a month at least. The downside is that the angina medicine gives me headaches.
Saturday and its been an appalling night of insomnia, where I have resorted to co-codamol to help my sleep and now pay for it, all day. I am wiped out, unable to raise enough spoons to do anything other than lay around and make the odd foray into the garden to hang out and hang in my washing. Apart from that I listen continually to Mark Steel is in Town and watch football, and latter McDonald and Dodds. I am exhausted by the time I take my night meds and vow never again to take co-codamol and to rely on paracetamol. I am just glad to get to the end of the day and pray for sleep.
Sunday and I wake up lucky to have had a better night. I check my vitals and submit my blood pressure to the GP surgery and slowly get up to have breakfast on the patio with my partner. We have friends dropping in the afternoon so once the meds and food is over me and my partner take to the obligatory pre visit clean and tidy up. In a moment of domestic pride I clean and shine the recliner and then once again organise office corner before continuing with the rest of the chores. By lunchtime the house is visitor ready, so all that remains is to snack and wait. While I wait I jot another poem and tentatively decide to call the third collection in the Cancer Years series “Breathless”
410 Is this the age of breathlessness as my blood pressure creeps up? Where my Sisyphus plods slower no matter the slope or the volume of the accursed rock. This feels like a new battle where the enemy has higher ground and my weapons are blunted. Each manoeuvre has now to be planned carefully, considered, conserving. Base camp is held, only forays now attempted to gain reconnaissance from the field. I await major reinforcements but my allies are far off, and stretch across many campaigns, so now I am entrenched. My observers diligent, my signallers at the ready, but if rushed I may not repel. This is a tricky time, more camouflage than action so I wait and while I do so I write despatches in hope that this is not the last.
410 18-08-2024
My friends arrive and we go out into the garden and settle down to cream and jam scones accompanied by conversation. It is a real pleasure to see my friends again and to have a chat and catch up. We of course talk ailments and changing times because that is what older people do. Its all about acknowledging a change in the balance in our lives and what we can ditch and and what is now truly important to us. We also talk about what new things we have discovered to listen to on the radio or the new writers that we have found or simply a new pleasure. My friends leave and I re-park the cars on the drive and start to draft the weekend blog finding that I had forgotten to finish and post Fridays blog.
I have no idea what I will do tonight apart from read, watch TV and prepare myself for tomorrow for tomorrow is Jab Monday. I will need to collect my jab from the chemist before I attend the GP surgery at lunchtime tomorrow. What I do will all depend on how tonight goes, sleep or no sleep but definitely no co-codamol.
