Monday, its a jab Monday, so I get up slowly, having done my cyber checks and taken my vitals. In my cyber messages was this:

I think I get caught up in thinking that I am the person in my head, the young energetic person with youth on my side, ambitious and with limitless energy rather than the actual seventy five year old with stage four metastatic prostate cancer person that I am. Its important that I do not define myself by my disease however to remain moving I have to balance the management of it and what ever else I wish to do. Every day I get now is a real gift and an opportunity. The opportunities now are more cerebral than before but since my journey started I’ve managed holidays and trips, joined my local poetry stanza and published my first book of poetry. Along the way there has been some dips like managing my sisters death and the other challenges that family life brings so all in all the past four years has been an interesting learning curve. It has been a time of much reading in order to keep my brain fed with the result that I have read much more than I would have done and almost without exception the books have been new and outstanding, to which I owe much to friends who either point me in the right direction or gift me “must read” books. At the moment the balance is a bit more of a juggle but with smaller steps I should e able to keep moving forward.

So as I sit this morning looking at the sunshine I start to draft todays blog early. Before I go to the GP surgery later today I will hopefully type up a couple of new poems and maybe write a letter. After that I will see what small steps I can find to take.

I lunch on bacon sandwiches before walking down to the GP surgery. It is a real effort and i arrive feeling crap. Once called in I hand over the jab and soon the nurse is sticking the needle into me. I am ushered out and I start the semi shuffle back home but I become so enraged with my self that I force myself to go to the Co-op to get a paper, they have none, and a bag of chocolate buttons. As I walk home I become more angry with myself and mutter the odd motivational “for fuck sake Roland get a grip”. Judging by the look a fellow pedestrian gave me I obviously said this a bit louder than I intended.

Arriving home I cannot believe that I am so out of condition and salts. I settle on the sofa to cool down when I get a message from my eldest daughter to check my accounts. I do, and find that the solicitor is winding up my sisters estate which means the rest of my inheritance has landed in my bank account. I do not really care if its a fiver or five hundred but it signals the end of more than a year of death admin and that is a relief.

I start to type up a couple of poems that I wrote recently and add them to my “all I have file”, whilst thinking about putting another collection together to try out a British based publisher. I update the blog before returning to the poetry project and my Ruth Ozeki book.

I am feeling rough when I go to the toilet and find I have blood in my urine again. I am so pissed off that the little walk I’ve taken has induced this. All I can do is rest, drink water, put my feet up and rest. It means I cannot help lift in the Tesco order when it arrives later in the evening, and feel like a chocolate fireguard. I’m seething inside at feeling so fucking useless, all I can do is grit my teeth, and try to be rational and take it tiny steps at a time. By the time Only Connect (the impossible quiz show) is on my mid day injection is getting sore and I down some more paracetamol. Tonight is a night I go to bed early and curl up and hope I sleep as long as possible or as uninterrupted as little as possible. So I down my night meds and retreat from it all. What a day.

Sunday and before you know it, it is mid morning. It seems that the new mattress is doing its job and allowing a longer nights sleep. I weigh myself. It is not good, I come in at 99.9 kilos. It is the result of my inactivity over the last two weeks and my sweet tooth that is doing the damage. My partner and I breakfast and I take my morning meds still including the antibiotics. There are some things to do that I have let slip over the past week including ensuring the squirrels and the birds get fed. I venture into the garden and fill the feeders. While out in the fresh air of my garden I take the opportunity to drain the water butt. Such simple tasks but ones that I find drain me of energy spoons. I get everything back into the the shed and then take in the garden camera.

There is very little on the garden camera except for one appearance of our local fox. With this done its time for a late lunch and a bit of rest. I have rediscovered my foot stimulator, which is not something I get to say often, but I really enjoy that tingling feeling in my feet. It is strange watching my toes twitch as the current flows through my feet and in to my calves. It is oddly refreshing. The challenge of course is to move the intensity up. So far I am up to 65 on the dial so there is a way to go to 99. With singing feet I do a bit hoovering and then watch a rugby match. Everything is being done in small bursts.

The evening rolls round to the evening meal and the world athletic championships. This is the evening I start to take prophylactic paracetamol before tomorrows monthly injection. I am mentally stealing myself for the walk down to the GP surgery at midday tomorrow. Its not so much the actual injection, although not pleasant, it is the following 48 hours where it becomes sore and I feel like a withdrawing junkie. So I am preparing myself. All I can ask is for is a good nights sleep and no worsening of my symptoms.

Saturday and I wake first and make my partner tea in bed. We chat before I take my vitals and check my cyber messages and litter. Once up I make a light breakfast and take a walk to the village chemist to collect my monthly order of drugs including Mondays injection. Yep its that time of the month, which means come Sunday I will be taking prophylactic paracetamol. Anyway I walk home picking up a paper and some doughnuts on the way. By the time I get home I feel absolutely knackered. I had planned to go to the gym while my partner had a pedicure at the club spa. but I could not face it.

I tried to distract myself by watching snooker, athletics and writing a couple of poems but I continue to feel pretty rank. Of course I am scared that I am going to slip back to how I was last weekend and try to relax. My partner makes lunch and I continue to try and rest doing crosswords and keeping an eye on the athletics. I read for a while but I am becoming more and more frustrated with myself. Its the pervasive feeling that something is not right that constantly niggles at me. I think it is partly to do with coming to the end of my 28 day injection cycle. In a moment of frustration with myself I drag out the Circulation Max Reviver and give my feet thirty minutes electric stimulation. I take a rest and read for a while in the quiet of the bedroom before my partner askes me to run my eye over a draft document. It takes a little while to get my head in gear but I manage it and help send it off to her brother to read and comment on.

All during this time I revert back to drinking a lot of water and trying to remain as hydrated as possible, my anxiety is high and I am twitchy about any exercise in case I trigger a worsening of my condition. Its the swings from feeling relatively well and positive to the sense of apprehension that is difficult to manage. Staying calm without apprehension is the difficult. I would like to just get on with things but find myself regularly assessing whether I am doing the right things to keep me as well as possible, which leads to a sense of vulnerability. I know I want to be active, to not fear the Real World and to get out and about but fear exercise adn effort will trigger the bleeding into my bladder. I feel between the devil and the deep blue sea. My solution is to take one day at a time and set really small goals, like fill the squirrel feeder, type up poems and prepare for the next attempt to publish. I try to stay organised and to make contributions around the house. Every so often I check my social media. I did post something on LinkedIn and was surprised how many people responded in a supportive way. Everything else has been muted.

The evening passes and I end up drafting the blog, taking my meds and going to bed. Before I do though I challenge myself to think about the day and whether its been as bad as I feel it has been. Its true my gut has been off and I have lacked energy but I did get a lovely card from a friend in Scotland, I’ve drafted two poems and read for a while. I have also toyed with a thought I had when I woke up. I have been watching a lot of Mock the Week clips of scenes we would like to see. I thought about the one that goes “Things you wouldn’t see on an exam paper”. My thought for that one was: Religious Education, Question 1 “if there are no right or wrong answers how will God score you?” It amused me at the time. Electrocuting my feet was fun, I shall do it more often. Of course the major positive of the day has been no blood in my urine or pain. Its amazing what we take for granted, and what cancer forces us to reconsider. I also noted the first cherry blossoms of the year on a neighbours cherry tree. In fact Spring is everywhere. Note to self, “join in”.

Friday and I wake to yet more rain. I am brought my usual hot water and I skip through my cyber checks and then on to my vitals, all good, before donning my leopard head slanket and making breakfast. I do nothing of note for a while and then have a shower. Showering is taking a lot of spoons at the moment, a friend who is continuing to battle long COVID has confided that taking a bath is less heavy on the spoon economy. I fully agree with her. However I shower and then have the task of drying my now long hair. Once I am dry and coffered I dress and feel much better for the experience and join my partner in a bacon sandwich for lunch. As she goes off with her brother to see her mother I get ready to go out to the post office.

Its cold outside but I am wrapped up warm as I walk slowly to the post office. I am sending paperwork to the solicitor who is still dealing with my sister’s estate a year on from her death. It feels as if the end of the death admin is in sight, which will be a relief to us all. Having sent the documents guaranteed and trackable post I treat myself to fruit pastilles, chocolate buttons and a can of diet coke with a paper. The can of diet Coke is a rare treat from me as all I have drunk for days is hot water and very berry herbal tea. Once home I do the cross words and have my treats before settling down to read my Ruth Ozeki book. This is how I drift through the afternoon, that and messaging my son in Sweden, until my partner returns and I start to draft the blog. Today is very much the needed mundane of recovery from my recent ills.

The evening has world indoor athletics in it and at least one comedy panel game, beyond that I have no idea, although I like to think I will read for a while. There has been no telephone call from the Americans about my book, despite them saying they would ring back. I guess I will have to email them and nudge them. So I tentatively feel I am getting better from my set back but need to be careful with myself and grow the confidence in my body back to a position where I can function in the Real World again. I understand now how people can loose confidence and become averse to going out.

Thursday, and the day starts with my usual rituals of checking my phone and drinking hot water. That out of the way I check my vitals, all good as usual. Then its up for breakfast followed by a morning of editing poems. I ring the prostate nurse and leave a message asking for advice. By lunchtime I am tired and make myself a couple of rolls to be interrupted by the solicitor who is managing my sister’s estate ringing me. She brings me up to date and promises to send the final account by end of the day. I carry on reading my Ruth Ozeki book waiting for the Americans to ring me and do the book deal. They never do, bastards. On the bright side the solicitor is as good as her word and sends the final accounts through to be signed off, so I have some admin to do. The prostate nurse rings me back and we have a chat about starting my blood thinners again The evening rolls round and I watch the final episodes of Payback and then take my night meds before heading for bed.

Its been a slow pedestrian day, to allow me to rest and to get a plan together. I’ve rested but not really got a plan, I do know that I need to get out and to become more active again, so that is my next priority.

Wednesday and I wake up feeling somewhat strange but I put it down to the change in my medication. I’ve been on blood thinners for four years so I guess coming off them for a few days is going to be a bit odd, coupled with the antibiotics, its no surprise. I lay in for a bit before doing my vitals, which are all good, so the arithmetic of my life is still sound. I get up and have a plain breakfast with my morning meds. When I check my to do list and my cyber stuff I realise I have not posted yesterdays blog so do that before I move onto other stuff. My partner and eldest daughter go off to the hospital pharmacy to collect my next three months of chemotherapy. Today is the start of cycle 10.

My eldest daughter has talked the solicitor of my sisters estate and manged to get a response from her and in theory there will be an update soon. With that out of the way I can get on with the pressing matters of the day, like keeping warm and doing the meter readings. My intention is to contact the publishers of my book and ask them to do a second one, called the Travelling Years, which will comprise of poems I wrote in hotels and restaurants when working away from home. So my maintenance project is to prepare the manuscript to send. I also have another new book to read. It was a question on Mastermind about the Buddhist nun who wrote an award winning novel. I just caught her name as the answer and thought that it sounded interesting, so I hunted it down on Amazon and order it. Amidst all of yesterdays ups and downs I had forgotten that it had arrived. It starts with a young bereaved boy who starts to hear voices but realises they are the voice of the things around him. I am hooked already, so now I have two books on the go.

I read for quite a long time and get drawn into my new book, it is very much “up my street”. I am so taken with it’s first thirty pages I log onto Amazon and send my book sending friend a copy before returning to it. My partner goes to see her brother as they continue to wrestle with their mothers full time care. It is clearly a huge juggle and not without its stresses. While she is gone I draft an email to my American “publishers” but also follow up on the contact that my partner has found for a reasonably local publisher. I create an account with the new contact and use their instant quote facility to get and idea of how much they charge, which is reasonable, but an unknown quantity. I plan to ring them tomorrow to have a chat about what they offer. I also plan to ring the Cancer specialist nurse to ask about the discontinuation or reduction of my apixaban as it appears that my current management plan is working so far.

The Americans ring up and make me an offer. They want to publish my second book and distribute them both across twenty platforms on a global basis. They quote me a “special” price, which is a bit of a “gasper” but not so far beyond the quote pro rata that the English company has quoted. I tell them I will think about it and to ring me tomorrow. I am not sure where I stand at the moment, I do not want this to take over my life, I see it as I view gambling, it has to be money I am prepared to lose, but then this is about vanity nothing to do with high class poetic quality. I always said I wanted to publish stuff so that family and friends would have more of me, those bits that are not often, if ever, on show. Given my circumstances, time is of the essence and there is a lot to get through.

I go into the evening with projects on my mind, with football on the agenda and really good book to continue reading. Despite everything it would appear there are still fruits to be plucked in this life. Of all the things that I have done since my diagnosis this blog is the thing that I think is most useful both in achieving its original intention of keeping family and friends aware of how I am doing without the need to start difficult conversations or wondering what to ask or how to ask it, and giving me an outlet for the experience of dealing with my cancer. Everything else is being icing on the cake. I must not get hung up on how many books I sell or views I get, that way lay true madness. So tonight I am able to start Cycle 10 due to my partner and eldest daughter collecting my Chemo meds for me, so it is onwards for me.

Tuesday, I wake after a reasonable nights sleep. My partner goes to work and I check my messages and cyber litter. My eldest pops head round the door to ask if I have any Ibuprofen, I haven’t as I cannot take it with my cancer. She retreats. I go down stairs to get breakfast and find my eldest daughter very distressed and throwing up violently. She either has norovirus or food poisoning. She is desperate for Ibuprofen so I get myself together and go to the chemist, When I tell them what I want them for the pharmacists says no. Apparently Ibuprofen is a stomach irritant and is the last thing you want to take. So I take their advice and get Co Codamal and some Dioralyte. I pop into the village store and get a paper and some chocolate orange hot cross buns. They do not turn out to be that good.

When I get home my eldest daughter is curled up in bed, so I set up a bedside table for her and explain what the chemist has said. I leave her with the pills and potions with instructions to stay warm and hydrated. I make breakfast and retreat to my sofa end office to eat and rest after my exertions. I have several WhatsApp chats and divert myself with doing the crosswords in the paper. It takes me a long tine to work through them as I need to pee more frequently. Its clear my symptoms from the last couple of days are still with me but at least there is no blood. I am hopeful that the medication strategy is working. I am trying my very best to rest and be calm. Juggling my energy seems to be an important task at the moment.

At lunchtime I make soup and continue to rest .I discover a women’s football match to watch. Scotland loose to Finland on penalties in a cup final that no one has heard of. I check on my eldest daughter who is still snuggled down in bed but appears to have stopped throwing up. I leave her to rest. I put the bins out and start to draft the blog. Finally I start to read The No.1 Ladies Detective Agency, which is the latest book my friend has sent me to keep my brain fed. I remember it being a TV series so settle down to read it while Alexa plays me meditation music in the background.

The rest of the day and evening is consumed with a football backdrop as my eldest daughter recovers what now seems most likely to have been food poisoning and the family trying to sort out safe twenty four hour care for my partners mother. Its been a bugger of a day full of distress and tears as we all try to get through it.

Eventually I take my meds and get myself to bed and hopefully sleep. Tomorrow there will be the ripples of today to deal with and whatever the new day has to throw at us. I can only do what I can and keep fighting forward.

Monday and after a reasonable night I wake early and mentally check myself over. I am not too bad, a bit groggy and a bit knocked about but oaky. My partner brings me a hot water and I leaves me to go through my cyber messages and litter. Before she goes to work my partner collects the antibiotics that the paramedic prescribed yesterday and goes off to work. My eldest daughter rings me toast and water so I can take my antibiotics. I check my vitals and find they are within range, so a good start to the day. Having got up I head for the lounge and try to make myself comfortable for the day and write a to do list.

Surprisingly I get through to the GP surgery and book my next injection time for Monday. Ordering my drugs for the next month goes smoothly which gives me time to ring the solicitor to check if there is progress on my sisters estate, but it goes to voicemail and I wait for a return call. Next on my list is incorporating the antibiotics into my drugs wallets over the next week. So I’ve managed my meagre to do list and now I resort to resting and watching TV. I get bored and read my poetry book, I am interested to see how many of them actually chime with me now. All the time I am drinking water and herb tea to keep hydrated.

At lunchtime I clear the kitchen and make myself tuna pasta. I also start to collect urine samples to test to reassure myself my that I am not passing water. So far the results are good but I’m still experiencing some pain so I take paracetamol. My afternoon is old TV and crosswords. I’m still feeling knocked about by my condition and difficult to really relax and rest. Its not a good place to be but I’m trying to work my way out of it. I was unable to collect my next round of Chemo from the hospital pharmacy today so will have to make an effort tomorrow or make some sort of arrangement.

This situation is very wearing, I feel hemmed in and find it difficult to find ways out, it is the frustration of not being able to do the mundane and ordinary without worrying it is going to trigger a worsening of my condition. I know I should just rest but it is difficult when those around me are carrying enough of their own stuff to deal with, without having to pick up what I cannot do. Being able to focus on something is difficult at the moment, part chemo induce, part current condition. Ironically I got my next appointment letter from last Thursday’s oncology review. Someone will phone me on the 16th of May. I am not sure what my rational response is, my less than rational feeling is one of being abandoned to get with it with the help of anything I can get from dialling 111.

My evening will begin with a meal and then I will try to settle into a state of resting, which probably doesn’t help with sleeping at night. The one blessing is that the new extra firm mattress is so much more comfortable than the old one. A good decision and investment to be thankful for.

Saturday was one of those days of great joy and deep fear. My seven month old grand son came to visit with his parents. That was deeply joyous. An additional bonus was the delivery of the new extra frim mattress, something that had been long in the wanting and acquiring. The deep fear was my worsening of blood in my urine and the frequency of going to painfully piss during the day. While the family went to the the local bird garden I stayed at home trying to rest and drinking water and taking paracetamol. I watch rugby, ate with the family and retreat to the sofa again for more rugby and TV feeling progressively crap. I went to bed with more paracetamol for a difficult and interrupted night, although I noticed the greater comfort of the new mattress.

Sunday, I check my vitals and they are normal. I am first up and make my partner and I warm drinks, my condition worsens as I have breakfast with the extended family and then wave them off by midday. By now I am feeling distressed, concerned and very shaky. I ring 111 and get through to an assessor who asks questions which I try to answer honestly. The out come is some texted advice and the assurance that a clinician from the out of hours service will ring me within an hour. I take paracetamol, drink more water and start to draft the blog. As I do this I get a call back from the after hours team, they have decided to send a team out to me, which will be with me in anything up to six hours. I am told to ring back if my symptoms get worse. So here I am waiting. I take a urine sample which is very red with blood. This is going to be a difficult day.

I do my best to calm myself down, to breathe and think positively, but it is difficult as it brings back memories of Jamaica and the trauma that brought. Of course it is not made any better by the fact that today is the anniversary of my sisters death. All I can do is wait. My partner packs me a bag in case I get taken to hospital. So now I wait. I will not post again today unless I suddenly get better. I concentrate on saving energy, being calm and trying to be rational.

I wait and eventually a paramedic arrives and assesses me. Abbey the paramedic has read my notes and knows more about me than I did or the oncologist has shared with me. I have thoughtfully taken urine samples that she tests and then she takes my vitals and askes more questions. After this process she tells me what she thinks is going on based on her assessment adn the reading of my notes. Apparently the tumours in my prostrate have invaded my bladder something the oncologist forget to tell me, which explains why I am getting blood in the urine. It also explains why at the oncology review the oncologist just passed it off as a normal part of my condition. The paramedic thinks we can in the short term manage the situation by stopping the blood thinning Apixaban for at least three days. She also prescribes an antibiotic to guard against any infection. If things get worse I can call 111 again. So I have a plan in the short term. The paramedic leaves and I settle down to drink more liquid and see the night through before I can start my antibiotics. So there you are, the battle takes a new turn, game on. So here I go, life got a little more focussed and a little less mundane.

Friday I wake feeling, no knowing, this is a tricky day. I had an interrupted nights sleep and I feel sluggish and and low on spoons to start with. It takes me time to come round, to drink the hot water my partner brings me and to go through my morning cyber rituals. It feels as if I am treading water. I do my vitals and apart from slightly raided blood pressure everything is tickety boo. I get up and make a simple toast breakfast and retreat to my sofa end office. My malaise is broken by the early arrival of my new TalkGo microphine for the laptop. The idea is to get better sound for any videos I make to go on my YouTube channel. Of course I play with it immediately and instantly find that it is not as advertised a simple plug in and use tool. I end up making several test videos with no sound while I rummage around in the settings of my computer. At last I manage it and I am rewarded with really good sound quality.

Before I can get going on some real recording I notice the garden guy has arrived in the garden and is edging the beds and the lawns. I make coffee for the gardener and go out for a chat with him. While in midst chat my partner returns from the physio and joins in the conversation, which ends we depart to do some additional shopping for our visitors tomorrow. I am driven to our favourite garden centre where I eat a substantial lunch and have the opportunity to share bits of information with my partner. The most important of these being that our new mattress is arriving between 1pm and 3pm tomorrow. The weather is closing in and how we juggle the weekend may be up for grabs depending on what my youngest, her partner and new grandson want to do. Lunch over we go to another garden centre to buy additional food before returning home via the chemist.

Once home I once again retreat to my sofa end office and make a YouTube video for my channel. I keep it simple and save using my video editing suit for another time as my nice new microphone seems to be generating a high pitch whine I cannot get rid of with this software. In the end I keep it simple and upload my video to my YouTube channel. I set the time for going live as 7pm this evening. I have no idea what I am doing really, nor any idea what will happen but I guess I will find out over the next few days and weeks, quite possibly absolutely nothing. The link is below, feel free to share it.

The evening arrives and there is visitor prep to do, a meal to eat and a friendly women’s football match to watch. I need to get myself together for a early night so that I can prepare for tomorrow. Its going to be a big day with the visit by the new grandson and parent, a new mattress arriving and whatever unexpected things pop up.