Update — March to July 2026. So, following on from my last update where I had explained that I was going for surgery, quite a lot has happened!
March 5th — Surgery Day
05:30 — It's the last time in my life I will ever have that 10 minutes with a locked door, sat on the toilet, having some solitude and time to contemplate all that life has brought me.
06:00 — Set off for the hospital. It's a 75-minute drive with just the wife and daughter, and only my daughter actually driving. My wife decided many years ago that she always wanted to be a passenger princess.
07:20 — Arrive at James Cook University Hospital for one of the biggest ever days of my life. Because I am having an operation and the waiting area is small, I say my goodbyes to them both at the entrance, maintaining the facade of all being well but knowing this is as serious as it can get.
07:30 — I'm called through to the pre-surgery room where several nurses, doctors and anaesthetists get me to sign multiple consent forms for various aspects of this procedure. I should have invested in one of those signature stampy things, but today will hopefully be the only time I'm required to give my signature so much.
09:15 — I'm all gowned up, my special hospital underpants on, although when that's where they're operating, what's the point? I know the time because there's a big digital clock above the door as I'm wheeled into surgery, and then it all goes dark.
Later that day — I'm not sure what time it is, but I wake up, lights shining in my eyes and the hum of machinery in the background. I then hear a voice saying "Great, you're awake, John," delivered in that soft Middlesbrough twang. I look around and a nurse is standing at the side of me, monitor in hand, checking my blood pressure. My mind quickly catches up with my eyes and I realise I've survived my operation. My biggest fear was not waking up from it and realising I'd forgotten to do various things beforehand. But I'm not sure if that's how it actually works, and probably eternal nothingness would have been most likely.
Anyway, I'm able to speak, sort of, and I squeakily ask for some water. The nurse finishes her check and comes back seconds later with a drink. It has a straw so I don't have to try and sit up. I daren't move, not knowing how much pain I'm really in, but at this moment I actually feel good and I sip away as though it's my first cocktail on a beach holiday. The nurse then starts to tell me things, but my mind is still not functioning and I can't take it all in, thinking I must be deaf but realising it must be the drugs, maybe? I manage to catch the words "patient's drug button," so I'm definitely not deaf — it's just coming round from major surgery.
The nurse asks if I need any food and I'm not hungry. I've not had anything all day. But she brings me something mashed and mushed, placing it on the table at my side, then comes to raise me up in bed. It's electric and the mattress is moving underneath me like a cheap waterbed. My brain is catching up fast and I'm becoming very aware of my surroundings. I'm in a ward with a few other people; it's the high dependency unit and I can see several staff standing around and others moving between bays. It looks like there are 4 of us here. I get to see a clock — it's 19:30 — and I ask the nurse how long I've been here. She told me: since 17:30. My operation lasted just under 8 hours.
It's 20:00 and the shift changes, and a new nurse comes over to me. I've managed a few mouthfuls of food, but I've not looked down under the covers to see what's there yet. She needs to check my new best friend, so it's a first for me. Ta-da — I now have a flesh-covered silicon bag attached to my stomach. This is going to be a new, interesting life for me. She also wants to check my wound dressings; apparently I pass with flying colours as I can't feel anything down there yet.
I'm tired and start to drift off, only to be woken a couple of seconds later for another blood pressure and temperature check — although when I look at the clock it's 22:00 and all the lights have been dimmed. I fall back to sleep.
March 6th–12th — The Days After
It's 06:00, and apparently that's wake-up time. I don't remember if I woke up or not during the night, but I feel rested so maybe not. It's check time again and then breakfast. I do actually feel hungry, so I opt for some cereal and toast. It's a kid-size portion but felt like an all-you-can-eat buffet — I can't manage it. I'm still mainly pain-free but can feel my wounds, and I remember the pain button, and 10 minutes later I'm feeling great.
10:00 — 2 nurses come to see me. They are the stoma team. They explain what's happened and what I need to do, but they will change me today and help me. My first stoma bag is removed and I realise I could do with shaving my stomach hairs to aid performance.
12:00 — The consultant and his cohort came to see me. He explains that I've had robotic surgery with 5 doctors, 5 nurses and 2 anaesthetists, and they consider the surgery successful — and can he have a look at my bum? He proudly announces to everyone that he's pleased with everything so far, and it feels nice to hear that.
14:00 — Family time. The wife and daughter come to see me in all my glory and it's wonderful. Mentally I'm fine; physically I'm different. 10 minutes later the physio team turned up and made me get out of bed to walk around the ward. I wasn't expecting that, but it's important to start as soon as possible. 5 minutes later I'm back in bed discussing stuff from home, and then they leave and the granddaughter and son-in-law come in. She's excited to see what's been done to me and can't believe this is my new poop chute!
For the rest of the day I'm left to my own devices and try to do a puzzle book, but my mind can't concentrate, so I drift in and out of sleep, being constantly woken for physical checks on my body.
March 7th and it's moving day — I'm being moved to a specialist ward that deals with lower body issues for both male and female. I'm put in a room with 3 other people and the staffing level is definitely lower, but I guess that means my dependency is lower too. As I sat there admiring my new surroundings, a massive sound echoed around the room. It's my bag — it's starting to work, or should I say my new colon mouthpiece is. The bloke on the other side looks up and smiles and I start laughing. "Sorry, mate, can't be helped," I say. "Don't worry, it's a good sign," says Paul opposite (I found his name out later).
March 8th – 12th. Several visitors, family and closest friends, stoma nurses daily, physios and the consultant regularly come and check on me. It's been an interesting few days, with a couple of accidents resulting in me standing stark naked in front of the nurse at 4am covered in my own poop — but the dignity ship sailed many moons ago — and then, amazingly, 3 hours later, a repeat of the same incident! There's no on/off button for this thing, so I'm having to cope with it the best I can.
The 12th is discharge day, and I seem to spend more time awaiting the forms than I did the operation, but it's my medications that are holding the process up. Finally, at 14:00 we set off home. The daughter and wife have collected me, so it's a weird one on the way home, listening to my new bag gurgle away. It's as though I'm bringing a swaddling baby home (sorry, ladies, not trying to compare with birthing).
March and April — Recovery
It's a slow, steady rest of the month. I'm on low-dose painkillers as I'm expected to have a slow recovery, so it's a case of managing the pain rather than eliminating it, as I'll be on these for a while apparently. I managed to visit the pub and it feels such a treat, and it's good to see friends again as it feels like ages since I was there — it's only been 2 weeks. I'm having to monitor my intake for the first time ever as it feels different, so from 4 or 5 pints on a teatime to a couple or 3 all night, it's a whole new experience for me. But it's nice to still have a social life. To me it's also very important, as the banter doesn't stop just because I have no bum hole. Lego man is a favourite term of everyone's, and many others I literally cannot put into print. With friends like these, who needs any others!
I'm having fortnightly meetings with my local stoma nurses, who advise on best practice and change my bag over. It's a skill, this, placing it just right over what looks like a little dog's lipstick. But we're getting there.
At the end of March I went to my local GP surgery to have my stitches removed. I had been the week before but was told they weren't ready to come out yet, so here we are, back again. The nurse gets me to lie on the treatment room bed in a position I have become very familiar with. Her first reaction is that I have the neatest set of stitches she has ever seen. I explained that a robot had done it and she was very impressed. Anyway, she can't get to the first stitch as it's covered by a bit of skin, so she asks for the GP's help. A man with the biggest hands ever comes in, and within about 3 seconds my soul goes through the ceiling — but we've started. They've used a wire similar to fishing wire, but it feels as though it's wire for a whale shark. I touch the ceiling several times through the extraction, and we get to the last stitch and it's scabbed over. The GP comes back and I put myself into the brace position as he starts to tug on the wire. Absolutely amazing, the nerve endings that are near our bum area — however, he announces that I'm done, all out. I get part of the old stitching and contemplate recycling it into a statue of the area it covered.
April, and we have managed to only have a singular accident at home. Not the most pleasant experience, with a mini Mount Vesuvius spurting from next to my navel whilst I frantically try to get to the bathroom and my wife hysterically laughs about the smell. Yeah, sympathy is coming out in waves — and you've got to laugh. I'm just building up material for telling at the pub.
I have an appointment to see the consultant surgeon to check on my wounds, and he declares that he's satisfied with how everything is looking. I'm advised that a scan will happen in June time, as they wait an extra bit of time to ensure that any clotting has disappeared and it doesn't show up on the scan. "Can we travel?" is the question my wife and I fight to say in unison. "Absolutely — 6 weeks' time." Is that 6 weeks from the operation or from now, we question. "Operation," he replies. Woohoo, we're going away — not sure where, but we are.
I see that my Italian music hero Tommaso Paradiso is playing in Catania, Sicily, in mid-July, and my wife finishes working at school early, so we can actually go. I book the tickets, flights and hotel, and we have our first holiday to look forward to. But what to do at the end of May when she's on half term? Message the cousin in Alicante, Spain, and she invites us over, so flights booked and we have 2 holidays already in the bag.
I have also booked several concerts at the local Open Air Theatre, starting June 5th with Mr Rick Astley and a few others, ending with Teddy Swims in late July. We are planning on going to the USA for summer to see family, as it's my 60th birthday at the end of August, so we have a whole road trip planned — Seattle to San Francisco, Hawaii for a week, and then Alaska for 3 weeks, to include an actual birthday party for me too. Can't book anything at the moment as I can't get insurance until I'm given a definitive health statement.
May and June — Travel, Concerts and a Scan
Carrying on from April mainly — back to my normal routine and doing school runs every day and a visit to the pub most evenings. Towards the end of May we fly to Alicante to stay with my cousin. It's a nice 26–30 degrees Celsius. I experience no issues flying, having worried that my bag might swell due to the air pressure (the thought of it exploding mid-air and the consequences do not bear thinking about!).
Going swimming on the beach, and it's the moment of truth: do I have the confidence to take my top off and expose "Donald" to the full glare of all the other holidaymakers around me? Of course I have, and soon enough I laid on a towel on the sand, Donald enjoying his first public airing. It's a liberating moment, and I realised nobody actually cares. No stares, no finger pointing. It's fine.
June, and I've got a scan date — it's the 14th, Sunday lunchtime. Set off nice and early to Northallerton, passing through James Herriot countryside; it's glorious, naturally. The CT scan is over and done within less than 30 minutes. Time for a pint and lunch — it's almost 12 noon, or 5 o'clock somewhere. We return back home and go to the pub (again, but it is Sunday Funday) and my mind is thinking, please don't call me, please don't call me. "No news is good news" is my motto.
We get to the end of June and no contact from the hospital. I must be in the clear, but I've not heard anything and need a confirmation so I can get my travel insurance. I contact my unit's secretary and she says they're awaiting my results, as it's a standard scan, and once they have them and it's gone through MDT they'll contact me. No issues.
We go to our first concert of the season down at Scarborough Open Air Theatre, and as we have attended quite a few in the years before, we are recognised by staff with "Back again?" Within 3 weeks we have seen Rick Astley, Madness, Paul Weller, Skunk Anansie, Anastacia, Pete Tong, Richard Ashcroft and Billy Ocean. We've also managed to get tickets for James Arthur, David Gray, Alanis Morissette, Michael Bublé and Deacon Blue for early July, plus we've got Tommaso Paradiso and Teddy Swims in late July. 15 concerts in 7 weeks (we add an additional one later to make it 16 in 8 weeks).
July — The News I Wasn't Expecting
Friday 10th, 15:00. "Hi, is that John?" the person on the other end of the phone asks. "Yes," is my reply, and I can see it's the hospital on screen. "We need to see you Monday 13th at 13:30. Is that OK?" Hmmm. My mind is immediately suspicious, but I readily agree. "Can I have a telephone appointment?" I ask. "Sorry, face to face with the doctor, please," is her reply.
Sunday 12th. BBQ time at ours, and we have about 50 people in our garden and bar, eating, drinking, chatting, etc., whilst my mind is going through multiple scenarios of what's about to happen tomorrow. Lovely day, and one I would like to repeat again this summer — not the thinking, just the socialising.
Monday July 13th, 13:30. I'm called into the small conference room, the same one I was in last January and the January before. My consultant surgeon and colorectal nurse both enter the room, faces non-committal. The doctor asks me a question: "How long have you known me, John? It's about 20 months, isn't it?" — answering his own question. "And in all that time I've always told you matter-of-factly exactly what's happening and what to expect."
"Yes," I replied.
"Well, unfortunately your recent scan has shown that despite us removing the lymph node and surrounding areas and operating to the surgical limit, the cancer has spread into the perianal wall and is aggressive and, unfortunately, terminal."
I'm not sure what it would feel like to be hit with a brick, but I can imagine it's something similar. I didn't expect particularly good news, but I certainly wasn't thinking of this.
He goes on to explain that they should be able to treat me with chemotherapy, but they have exhausted their surgical limits and repeated radiotherapy is most unlikely. I am supposed to have an additional PET scan, and then they'll determine what chemo regime I'll be on. He then leaves and passes us over to the nurse, who starts to go through the next stages of not just my treatment but practical issues as well.
She explained that when they had had their MDT meeting on the previous Friday, everyone was totally shocked and faces had dropped when they'd heard that my cancer had come back and its manner of doing so. I would be entitled to certain government benefits, which, to be fair, I had already applied for when I came out of hospital due to my reduced mobility at that time, but now that application would be fast-tracked due to my diagnosis. It's £10k annually, tax free, so not to be sniffed at. I consider it a personal tax refund that I'm overdue, but I guess everyone says that.
Friday 17th July. We arrive in Catania, Sicily, and it's over 34 degrees Celsius. Hot, hot, hot. A beautiful old city, and we're staying in the middle of it, only 100 metres away from the concert venue. The following evening there are 5,000 of us in Villa Bellini — well, 2 British and 4,998 Italians — listening to one of my personal favourite concerts ever. It's all in Italian and I don't speak Italian, but I know all the words like the worst karaoke singer. People have brought their dogs, babies and pushchairs to the concert, and although we are standing in the city's main park, there are benches all around. There are dozens of police there, but they're just filming the concert on their phones. He's massive in Italy. It's an awesome evening.
The following night we went to watch the World Cup final at a local bar and sat with a Swede, a Frenchman, a Danish guy and a young German couple. We shouted at the TV and all applauded and drank limoncello when the Spanish won — well, we actually had about 100ml of limoncello and drank it like a shot. How British!
3 glorious days later we are back in good ol' England in time for Teddy Swims, and I decide I can get tickets for the Sex Pistols since we can't travel — the travel insurance quandary rears its head.
I've got an appointment with my oncologist, and also my GP practice is coming to visit me to put a care plan in place. The oncologist says I will be going on a 4-week cycle of a 2-drug therapy, with 3 infusions followed by a break, repeated up to 6 cycles, scanned after 3 to see where we are and whether I'm coping physically and mentally. As he repeats to me, this is not a curative treatment but one to maintain me and, hopefully, my quality of life for as long as possible. However, if that treatment isn't working, then we'll move on to an immunotherapy treatment. I do not question my practitioners, as I believe that after many years of study and clinical practice they have the right to tell me what's right for me. No Dr Google here!
My GP care coordinator has been, and she's advised us about the benefits and governmental help we can be getting — but I've literally just received a nice pot of cash in my bank account. Cheers, DWP. It's a pleasure paying taxes and knowing the system works more than it fails or lets you down. This is also a great moment for my wife, as the coordinator says that she can be included with any help or support that's required even though she has a different doctor, and that the support can be given via her own GP practice. This is being very proactive on the part of the NHS, as it's only 22 days since I was given a terminal diagnosis and I already have cash, a care plan and an outline treatment schedule all in place.
Personally, it has also been a good time to ensure that all our affairs are in order and that when something happens, it's as seamless as possible for the family. We don't have a lot, but what we do have is the ability to use it efficiently and effectively. I have been a bit grim and written my wishes for my final celebration day, plus I have written the order of service booklet. This, for me, is also a very practical way of looking at things. I have also promised my wife (say it in a Borat voice) that I will get the loft/attic cleared out, as there is quite a lot of rubbish up there and I believe I put nearly all of it there. I also have to write an A–Z of how to do all the things I normally did.
I have become an even bigger advocate since the terminal thing, for telling people about my condition — a bit preachy at times, maybe, but who cares, I've not got that long! I guess raising awareness of this particular cancer is very important, because when I tell people that I have anal cancer, they nearly always say, "Do you mean like colon/rectal/bowel cancer?" and I have to explain that no, this is its own particular brand, like Nestlé and Mars are both chocolates but different! Sometimes the simplest analogy is the easiest.
I haven't been given a life expectancy yet, but if I was a betting man I wouldn't bet on double digits. Add me to your deadpool list and hopefully I'll fulfil your bet, although apparently you have to be famous for that. Having said that, Facebook sent me $40 last month and another $30 is on its way this month, as my concert videos have reached over 500,000 views. I did also mention my terminal diagnosis — not for clicks, but to update everyone outside my inner circle, and not on the concert posts anyway.
Anyway, does $70 make me an influencer? Ha, I wish. But actually I don't, unless that means everyone donates to this wonderful foundation, The HPV and Anal Cancer Foundation. I set a birthday fundraiser up on Facebook, a modest default target of £150, and on the first day we've raised double that. Hopefully more to come — but if just 1 or 2 people are helped by being made aware, then it's more than worth the 2 minutes it took me to sort it out.
So, To Conclude
- Yes, I am aware that I'm going to die.
- No, I don't know when.
- Yes, I'm mentally stable and comfortable.
- Yes, I'm feeling physically well.
- No, I am not doing a bucket list — I believe we have always lived our life as though it could end the same day.
- Yes, we do joke about it in the pub, and whether my wife will or should move on.
- Yes, it is funny, and I see no offence.
- No, I don't want people to feel sorry for me. Empathise, yes. Pity, no.
Anyway — live life and live your life, and as always: be kind, be generous, be supportive.
Part 1 — Diagnosis, Treatment and the Road to Surgery
My name is John and I was diagnosed with anal cancer on Saturday, December 21st, 2024. My diagnosis followed a prolonged episode of what was believed to be external haemorrhoids. Next week on March 5th, 2026, I am scheduled for an APR surgery with a permanent colostomy bag. This is a situation I never expected to be in but one that I am willing to accept in order to save my life and to be able to be there for the people that matter to me — my wife, my children, my granddaughter and the rest of my family and friends.
So for a bit of background, I am a 59-year-old UK man who has been married for over 32 years. I retired in July 2021 from my role as a senior buyer in an engineering company. I took early retirement because neither of my parents had lived past 70, with my dad passing at 69 and my mum at 65, and my family history isn't brilliant — longevity genes we have none. Cancer has accounted for more than 60% of my aunts, uncles, parents and grandparents.
2023 — "It's Just Haemorrhoids"
So way back in late 2023 I started to notice bleeding whilst having a poo. No issue, it's just a bout of haemorrhoids — I'm a 56-year-old man who doesn't eat enough fibre and probably has one or two too many at the pub too regularly. Anyway, let's get some cream from the supermarket and that should clear it up.
Fast forward a couple of months and the bleeding has not improved but the pain has increased, so better see the doctor. I make an appointment and the doctor asks the standard questions and two minutes later I'm curled up on his treatment couch while he boldly goes where the sun doesn't shine. OK, he says, definitely external haemorrhoids, and he'll prescribe some cream and painkillers — if it hasn't cleared up in a month, come and see me again. Cheers, Doctor, I say and get on with my life.
A month later and I'm not getting better. In fact it's getting progressively worse and Christmas is fast approaching. We make another appointment to see the doctor, who is more concerned now and asks me to do a FIT test to eliminate any serious issues. Christmas comes and it's now January 2024.
2024 — The Long Road to Diagnosis
It's early January and I get a request to make an appointment to see the doctor. I'm dreading it. It's not normal this way round after a test. We go and the doctor says that the elevated blood content of my sample has raised concerns, so I'm being scheduled for a colonoscopy. I have an appointment set for the following month, nicely timed for just after my trip to Benidorm with my pub friends.
It's my first time going there and several of the others also, so we want it to be a great time. I really enjoy myself on holiday but subconsciously find myself unable to let go and truly throw myself into a week of partying. On some nights I find myself going back to the hotel at the unreasonable time of 10pm — what a lightweight — but my head wasn't in it nor did my body feel up for it. I was constantly thinking of this colonoscopy.
Upon our return I only had a few days to wait for the appointment. Lo and behold, what do I find on arrival but two close acquaintances sat in the waiting room, all for the same procedure. We laughed and talked about why we were there and eventually it was my turn. I walk into the treatment room and see the masked nurse, bed and screens in front of me. Next thing I get a greeting of "Hi John" and I realise it's one of my neighbours — I knew she worked at the hospital, just didn't realise this was her job. Guess we are going to know each other a lot better after this. No more awkwardness about what colour bin needs putting out now.
Anyway, I've already been given a sedative but as the camera starts to enter me I grunt and cry out in pain. They stop, apply more lubricant and try again, but the pain is too much. I'm feeling disappointed in myself for not going above and beyond but it felt not just painfully uncomfortable but like someone was using a red-hot stick to enter me. They called it off there and then and I was trolleyed for a surgical assessment. A consultant surgeon came to see me and inspected my tender area and said that it looked highly inflamed and I would definitely need to come back for further investigation.
Two weeks later and I'm back. Different nurse but same experience, only this time a successful conclusion — and as the camera rapidly exited I was told that there were no signs of polyps or internal cancer cells. This was a great moment and we celebrated as a family that evening.
We then carried on life as normal. Even though I was still in pain and bleeding occasionally, it felt less onerous as I'd been informed that I had no cancer present. We travelled as a family to the USA and back to Benidorm as a couple. And then we got to the summer holidays and I was starting to feel tired constantly, would have daily nana naps, and then I had a couple of days where I bled seriously and went through several pairs of jeans in rapid succession. My wife insisted I go back to the GP and I did. At my appointment he said he would refer me for a haemorrhoidectomy as long as I quit smoking.
Seven weeks later I was back but my GP had left the practice and I had a new doctor. He examined me and questioned me and said he would make the referral. I was very pleased and glad that some action was finally taken — but hey ho, it's only haemorrhoids. The next few weeks I was waiting for that NHS call and finally got one in early October to say that I was on the list and would be contacted shortly to arrange an appointment.
Mid-November and the call came. "Hi John, where would you like to have your operation?" Anywhere that's quickest — I'm retired and can go anytime. "OK, well your local NHS trust has a waiting list of between 8–12 months." Oh, wasn't expecting that, but at least I'd have a date. But then a shining light of NHS goodness came and the caller said, "Can you travel?" Absolutely, I replied, and as if all my wishes came at once I was asked if I could go to an appointment the following week but with a different NHS trust. Wow — yes, yes and yes again. The only thing was all treatment and follow-ups would be at the same trust, 50 miles away. Appointment in hand, we were 50% of the way to finally dealing with the issue that was destroying not only my underpants but my self-confidence too.
November 27th, 2024 and we woke up to the worst snowfall for 10 years — roads closed, the whole town is cut off. No, of all days it had to be today. I phoned the hospital and spoke to the secretary who said they had no snow but not to worry, she would reschedule my appointment. She was true to her word and made an appointment for Thursday, December 12th. My wife asked if she needed to go with me and I said no need, it's an initial appointment, no problems.
December 2024 — Diagnosis
Thursday, December 12th. The weather has held and it's a normal day. I arrive at the hospital and meet my colorectal surgeon, who is going to go through this haemorrhoidectomy procedure with me. Curled up again on another treatment bench — this feels like what my life has come to. However, we are about to find light at the end of the tunnel where the sun doesn't shine. Unfortunately that's not quite what happens. Within 10 seconds of his initial inspection he says, "Please get dressed, I need to make a phone call." Confused, I listen as he makes a call referencing concerns and biopsy ASAP. He finishes and turns to me to say that he believes that one of my dangling lions is of serious concern and he needs me to come back ASAP for a biopsy. Two minutes later his phone goes and 30 seconds later I have my appointment — it's for the following day, late afternoon. He says they need to get to the bottom of it. Literally the colorectal man said that with no sense of irony. I leave and phone my wife, who is shocked, whilst I'm just trying to absorb what's been said to me.
Friday the 13th of December. This, my readers, is why the dates are all remembered — of all the days of the year I have to be getting an operation on Friday the 13th. It's a quick procedure for this biopsy business and within an hour of my arrival I'm gowned, sedated and in theatre. When I wake up my wife and daughter are in the room with me and I'm feeling good. Apparently that's the reason why fentanyl is so popular. 90 minutes later, after a cup of tea and biscuit — how British — I'm allowed to go home, and best bit: I'm pain-free for the first time in ages.
It's now the last week before Christmas and I need to get ready for the big day itself, as I'm cooking for 60 people. It's a tradition since COVID — I cook at home and take it all to the pub and we have a carvery there with family and friends. Wednesday the 19th of December and my phone rings. It's the hospital: "We need you to come for an MRI and CT scan on Sunday the 22nd, and you need to see the consultant on Saturday the 21st." This is serious. It starts to sink in. What's happening to me? Why now?
Saturday, December 21st, 09:00. I'm sat opposite the consultant with my wife beside me and he delivers the words I never expected: "You have been diagnosed with anal cancer." The world stopped and I started to cry as he continued in his metronomic voice, designed to minimise the impact of his words. It can be treated successfully when caught in time, and he believed they had got it in time.
I returned the following day for the first of what would become many scans. I returned home and started to prepare for what would be a busy few weeks.
After Boxing Day I needed to see the doctor because my pain meds weren't helping much, and I got an appointment instantly. I mentioned my diagnosis — a small win, but we will have it. My GP listened intently as I explained my condition and he said that he has only seen one case in 15 years of practice, which is why nobody had picked up on it sooner. He prescribed something stronger to help me sleep and I went away pleased. Maybe I should have complained, but it would do no good now, and as he said, he would like to see all my imaging and notes so that he can see what they missed but the colorectal specialist saw instantly.
It's New Year's Eve and the phone goes again — it's the hospital. "We need to make an appointment to have a PET scan as we have seen something on your liver!" Life just keeps on getting better, so we schedule an early January appointment.
2025 — Treatment
January, and we go for our first scan of the year, which also includes my first meeting with the oncologist. He explains what they currently believe to be the situation and that I'm T3 N1 M0, but they are awaiting the PET scan results for final confirmation. My prognosis is good though, which makes me shed a tear as I realise it's not as bad as I thought. Throughout this whole experience I've refused to read Dr Google and stuck with official NHS, Cancer Research or university publications. I'm told that I will have chemo/radiotherapy for 28 days and I will start within a few weeks. Bummer — I'm supposed to be going to Benidorm with the pub again in early February. What do we do? Well, I'm an adult so I obviously choose treatment.
Very quickly my scan results come through and my liver has what's believed to be a blister on it, so they'll monitor it but it's nothing cancer-related. However, I am diagnosed with anaemia due to the consistent blood loss and require an iron infusion. And back to the hospital we go, just to sit in a chair for 45 minutes with a drip and to be asked at the end, "Do you feel different?" No, I don't, but I'm done with this now. Several days later I'm back again for my bolus meeting. What's that, I hear people say? Well, for me it's a small plug that helps target radiation to the affected area. This means for me it's a mini butt plug — yeehaw! So many people have looked and inspected my special place I'm starting to track the numbers.
February arrives and I've had to give up my place on the Benidorm holiday. Fortunately a good friend has stepped in and taken my place and I don't lose any money. However, it's half term so I'm saddled with the granddaughter until I commence treatment. What a week we have — days out across God's own county, Yorkshire! She's 9, very savvy and very good company. It's a reminder of what I have to live for. She's my only grandchild and means the world.
So D-day finally arrives and I'm due for my first treatment day. It's Thursday, February 20th and I'm already apprehensive about it but the staff are so supportive that my worries went away. I started at the chemotherapy daybed unit for my first and only session. 45 minutes later I'm done and out and over to radiotherapy. I have to have a certain amount of liquid in my bladder before my treatment can start and it's a struggle. Eventually after two hours my bladder's at the correct level and I can start. Laying on the bed, knees raised and everyone staring at me through the cameras, my new life starts. Seven minutes later it's over and I'm out whilst the conveyor belt of other patients continues.
So for the next six weeks this becomes my daily routine. I have a weekly meeting to discuss my medication and this gets changed frequently to help me deal with the pain. My fatigue levels are highly elevated and I'm only sleeping for 1–2 hours at a time. Life is becoming a major struggle. Towards the end of the third week I realise I'm not going to be able to drive anymore as my burns are starting to become really uncomfortable. I also realise at this point that I've had 32 different doctors, nurses and technicians all inspect or check my bum out — thinking of writing to the Guinness Book of Records and seeing what I can claim.
I have asked friends and family for lifts for my final two weeks and they come through for me like I hoped they would. If I had known what my health would be like at this point I would have done some things slightly different — like not driving myself and allowing other people to help from the start — but it's a big ask, four hours daily. Probably would have moved my bedroom downstairs and also invested in wholesale Epsom salts. Baths and soft cotton jogging bottoms became my new favourite things.
April 2025 — Ringing the Bell
It's now April and my final day of treatment. I arrive with presents for the various teams who looked after me and I get to ring the bell twice in both radiotherapy centres. My wife and daughter are with me as the emotional toll takes over and I cry in front of staff and patients alike. I go home laden with gifts — well, actually they were classified as dangerous medications for my new pain areas, but I gratefully accepted them. I have 15cm × 3cm of raw open wounds on the back of my legs and I can feel all 90 square centimetres of them.
My body is wrecked and I have no strength. Fatigue hits constantly. Sleep is erratic and short-lived due to the pain.
Anyway, two days after the end of treatment I go on a stag weekend. Go-karting and drinking is the order of the day in Newcastle and it's also Grand National day. I survive until 6:30 in the evening, having had two pints, and make my excuses and return to the hotel.
The following days pass by and I'm sleeping or resting for more than 20 hours a day. I need to be more active but realise that my body needs the time to recover. The doctor calls and checks my pain relief and prescribes me different medications. Two days later life's good — can't remember what I was given but my pain has retreated and I feel in control. I start taking the dogs out one at a time, just for a walk around the block. I'm also going to the pub for a pint and gradually life starts to feel normal again.
Late April and another stag weekend, but for my soon-to-be son-in-law. Leeds this time, and I survive until 8:30 before I need to return to my hotel. It's the beginning of May and it's my daughter's wedding. Proud dad moment — walking, well shuffling really, my daughter down the aisle. It's an amazing emotional roller coaster and I know it. I hand my daughter over and take my place with the rest of the family, including the son who has returned from Australia for this moment. Afterwards we partied hard. I gave a speech and had a dance with my daughter and by 10:30 I know I'm done and need to go home. Life is good.
Remission — and Then Not
Tuesday, May 20th and it's my six-week follow-up appointment with the oncologist. And as usual I'm soon curled up on a treatment bench whilst person number 49 gets to inspect me. My body is prodded and intruded but it's all for a good cause. Finally the doctor says he believes that I am in remission — and yes, I can travel. That's all we'd been waiting for and returning home I was on cloud nine. It's a glorious sunny day and we're about to book a trip to Australia for the summer with our granddaughter. We're also going in style — Etihad business class to Manila before heading to Sydney.
Sleep starts to normalise itself and my strength is returning. My fatigue is getting better and I'm more active now than I was before. My wounds are healing and I'm able to walk more rather than shuffle around. We attend concerts seeing some awesome bands and artists. All's going well until just a week before our extended holiday. I'm back in mid-July having a CT scan to check my progress, and nothing thought of it, until I'm called the day before we leave. "Hi, so we know you're going on holiday, but what day do you return, as we need to do another scan — one of your lymph nodes is looking odd." Back in six weeks, I say. The reply: "Can you come in on Monday, the day after your return?"
Six glorious weeks pass in the Philippines and Australia. We visited Sydney, Byron Bay, Brisbane, North Stradbroke Island and the Gold Coast. The granddaughter loved it. We saw whales, kangaroos and koalas in their natural habitat. What a time to be alive. However, it's soon time to return and very shortly I'm back at the hospital.
Friday, September 5th. I had my scan on the 1st and am back in a discussion with the oncologist. One of the lymph nodes hasn't changed at all since treatment, so they currently believe it's necrotic. However, they are scheduling a scan in 12 weeks so they can check. Brilliant — just when I thought I was getting my life together. OK, we'll take it on the chin and just get on with necessary things. But first, let's book a trip to Portugal with the pub for February 2026.
Fast forward to late November and I go for a CT scan. Only three days later they are phoning me up saying I need additional scans — MRI, CT and PET. Things are not looking good. So the following weekend I'm back for my CT and MRI, awaiting an appointment for the PET scan.
December 16th. I'm back at the hospital in a small conference room with my doctor and a nurse. "So just to let you know, John," they say in the metronomic voice when bad news needs delivering, "your lymph node has increased in size and we believe that surgery is your only option, other than palliative care." The news I had dreaded was finally here and my eyes let me down again and filled up. So close, yet so far from a NED diagnosis.
Christmas comes and family from the USA come to stay and visit. Dinner for 60 again and all of my heart and soul goes into making this the best one ever. It's a success and family are claiming it's one of their most memorable Christmas times too.
2026 — What's Next
It's the new year, the year of my 60th birthday, and for my present my wife has treated me to a Liverpool vs Leeds match with hospitality and a two-night stay in Liverpool. An absolutely fantastic time apart from the match, which was an unbelievable 0–0 bore draw.
January 6th and I'm meeting the surgeon and another nurse — but she's there for me, for mental support. He explains that I'm going to be in surgery for six-plus hours and I will have my "sun don't shine" hole covered and a permanent colostomy bag installed. This isn't just life-changing but life-saving for me, as my lymph node has grown aggressively so they want to treat it ASAP.
Selfish I know, but my first reaction was: can I still go on holiday? You spoiled it last year, and if I can't travel again after surgery I would like to be able to feel the Mediterranean sun on my bare skin one last time. Anyway, he went — yes, no issue — and he'd reschedule for March 5th, which as of today is next week.
So I've been on holiday with the pub and am going to be doing bottomless Sunday lunches at home, both figuratively and literally. My now 10-year-old granddaughter is trying to come up with names for my bag for life. I'm looking for a Manchester United bag cover — I'm a Liverpool fan, don't forget. The pub banter has kept me sane and staying off Dr Google has allowed me to focus on my life and my responsibilities.
So apologies for the lengthy story — it's only Part 1! But I haven't lived the other half yet, so we will all just have to wait for that.
Many thanks for reading this. It's been cathartic and good for the soul to do it, and hopefully I'll be able to do a Part 2 in a few months' time. Might make it a soap opera, who knows.
Always remember to be kind, be supportive, and be generous.
