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.

Thursday and I wake up late after what feels like a deep sleep. Its almost the start of my oncology review time slot but I gamble the oncologist will not have their act together enough to be at the start of the slot. I do my vitals, check my cyber messages and litter and then get up to a toast breakfast and morning meds. I am meandering through emails and messages when the oncologist rings at half past ten. Its not “he who made a pact with the devil” but his registrar. She asks me how I am so I tell her I am not training, that exercise makes me piss blood and that I am tired, she takes all of this in her stride and tells me the good news is that my bone scan shows no new cancer and no increase in my existing cancer. She tells me that my PSA is now 0.973. They clearly rounded it up for the results that I got. So in fact I had a drop of 0.027, go me. She returns to the blood in my urine and notes my white blood cell count is good, my platelets are good and my kidney function is good and that as long as I do not get anaemic I should regard blood in my urine as part of having my cancer. Well there is a cheery message, although she did acknowledge that this was not a “nice” thing to have happen. Drink lots of water was her advice. With that said she went ahead and told me she would write me up for another three cycles and ring me again in twelve weeks. So basically the logic in the arithmetic is that I’m fine as can be, therefore the rest is in my head. I shall attend to my headology in due course.

After the call I renew my Rentokill insurance on the house, discontinue the mail redirection from my sisters old address and have a post oncology review doughnut and herb tea. I turn my attention to advertising my book, I have no idea how to do this so review my resources adn my options. I can pay the people who published my book a wodge of money to put it on more platforms, but that is costly, or I can put something on my YouTube channel and perhaps circulate a post on LinkedIn. I decide to post on LinkedIn to my network, a meagre 200 or so people. I’ve not posted before so its a bit of an adventure and feels narcissistic. As I am doing this the hospital pharmacy tells me I can pick up my next cycles of chemo from them on Monday afternoon, and as I finish replying to them I get my first ever “thumbs up” on LinkedIn.

Emboldened by this experience I checkout my YouTube channel that currently only has some restricted videos on it. I check the sound quality on my laptop as I explore making a video to upload. The sound is really poor so I hunt the internet for an affordable microphone to use. Not surprisingly I find one on Amazon, so I order it. It should be with me tomorrow afternoon, so I might be uploading by the evening. In the meantime my partner returns from seeing her mother and we sit down to an early tea before she has her singing lesson tonight.

Tonight there might be football and a bit more of Bodies, but I need to rest before a busy weekend ahead when my youngest daughter, her partner and my grandson visit.

Wednesday and I am awake quite early as I am taking my partner to the clinic in the centre of town later. Before I can get out of bed my partner brings me hot water and marmalade toast. While I nibble this I sort out my cyber messages and litter. Of course I check to see if my book is still on Amazon, of course it is but it taking a while to get used to the idea that bits of me are out there. I get up and get ready to be my partners chauffeur. Last night I did my navigator researcher and had todays route planned in my head. On the dot of ten o’clock we drive off to the clinic.

The clinic is in an inaccessible part of town with extremely poor parking so the plan is for me to drop my partner off and then find somewhere to park. The plan goes well, I’m good at having maps in my head so I was able to get us straight there without a hitch. I drop my partner off and then retreat to a far off Holiday Inn car park. Rather than sit like some sad person in the car park I went for a short walk to where I thought a Costa was. Alas it has fallen by the wayside like so many cafes in town. I walk back to the car and as I arrive my partner calls me serendipitously to say she is done. I pick her up and we drive to our favourite garden centre café for lunch.

Once home I strip off the fleece lined trousers that are boiling my legs and take my vitals before taking up my place on the sofa to draft the blog, during which I nap heavily. My very berry herb tea arrives and I have a celebratory pot while I draft on my laptop. I am apparently tired as I keep napping, I am hoping to watch a football match tonight but I’ve no idea if I will fall asleep or not.

I find that I have managed to do the next Tesco order, read my poetry book in the post excitement light of day and send a couple of messages to friends. By evening time pizza has been eaten, football kept an eye on and the worst Sandra Bullock film I’ve ever seen played out. I am distracted by the fact that tomorrow is my oncology review. I have a letter saying my appointment is at 10:20, but since the letter I have had texts and emails saying I should expect my call between 9:20 and 11:20. Once again the patient has to accommodate the physician not the other way round. How inconvenient it must be that people get ill and stop doctors doing what they want to do, presumably marine biology or something less aggravating than humans. I should get the results of my bone scan, apart from that I’ve no idea what will happen when I tell them that I’ve stopped training because it makes me piss blood, that my weight has gone up and I have lost my fitness. Everything they use to judge my wellness, e’g the arithmetic of the bloods and vitals are all good, so my guess is they will just give me another three cycles of chemo and tell me to fuck off for three months and to wait for another telephone call. And with that cheery thought I take my meds and go to bed.

Tuesday its book day, I do hope I am not getting myself over excited, but time will tell. I get through my cyber checks and doing my vitals before getting up for breakfast. I am starting to feel better from my cold but intend to take it easy this morning. Post breakfast I set about the task of re-editing the next poetry collection. It is a long and tedious job as I have to go through them all line by line. All the time I keep my eye on my Amazon account to see if my books are out for delivery. A friend sends me a picture of the book as it has arrived with her. Her comment is that it is thin. I become anxious.

I stop for lunch with my partner and do the days crosswords and chat to my partner about the hurdles to providing full time care for my partners mother. My partner returns to work and I put my now dry washing away and return to editing the poetry. At last I get the message that my books are out for delivery between 6pm and 8pm. I put the bins out for tomorrow and return to the editing. I start to read some of my early poems, it is difficult stuff to read and I return to editing the next collection. By tea time I can edit no more and start to draft the blog while my partner and her brother speak to the carer in Greece about cover for her mothers care. It is a sensitive juggle that is being done. In the mist of this my eldest daughter posts a letter for me and I returns with goodies for me to nibble as I continue to draft the bog. I am running out of spoons and I am getting twitchy about the book.

I have taken more photos of the flowers that are coming out in the garden and I get the sense that my garden is galloping ahead of me. All the bulbs in the garden are doing their thing, which I am grateful for at the moment.

In the midst of this day my partner gets a call to offer her an earlier appointment for her already booked appointment at the clinic, so tomorrow there is some driving to be done and another issue to be dealt with. For now though I look forward to the evening and the eventual arrival of my books. Beyond that I cannot think clearly at the moment.

With so much going on my partner and I decide on a takeaway tea, so I order our usual Indian and we settle down to wait for it. Before the food arrives Amazon deliver my package of books. I open it up tentatively and then suddenly I am holding onto copies of my book. My book has become a reality and it feels a whole mixture of thing, but mostly relief that it has actually happened. I think it is going to take a bit of time to sink before I can move on to actually getting the book on as many platforms as possible. For now I smile and prepare to take my night meds and go to bed a published poet having watched some episodes of Bodies.