Every sixth Friday I have to present myself for an appointment at the Outpatients Dept of the Royal Sussex County Hospital for a series of blood tests to be conducted. They look at all kinds of stuff, liver and kidney function, bone profile, glucose levels etc etc. It’s all to ensure that I have experienced no adverse reaction to my last infusion of Pembolizumab (“JJ’) and I’m well enough to receive a further dose on the next working day, which on this occasion will be on Monday 19th January.
Today (16th) is one of those Fridays. I’m booked in at 08:40 – I like to get it done and out of the way early. Hopefully my friend Si will be working; he’s been jabbing my arm and warning me about a “sharp scratch” since I started on this journey, and over those last ten tears or so he’s probably taken enough blood out of my arm to fill a medium sized bath. He’s a top bloke and has become quite a mate, as have so many other NHS staff involved with the treatment of my Bastard Cancer.
He’s a big lad and clearly likes his grub, does Si, so i think I might pop into the bakery, sorry “patisserie,” on the way to the hospital and pick up some cream cakes to hand out to him and his colleagues in the haematology ward, as today is my birthday.
And not just any old birthday either. I’m seventy years old today – three score years and ten no less.
Who would have believed it? Especially after That Bloody Doctor delivered my prognosis back in the autumn of 2015 when I was just a slip of a lad of 59 and informed me that my life expectancy was short at best. A lot of water has passed under the bridge since then but I have been truly blessed with good fortune and met some wonderful people along the way. So I Intend to celebrate this unexpected milestone with copious amounts of continental lager, very spicy Indian food, and a proper “knees-up” with friends in the pub on Saturday night when I’ll be sure to raise a glass and say a big thank you to all of you who have kindly supported me on my journey and helped me get this far against all odds.
Did you have a good New Year? If I had to guess I’d say 90% or more of the people reading this will reply with: “Ooh, you know, quiet. Couple of drinks and in bed by 10:00….”
When I was younger, much younger than I am now, New Year’s Eve was a special day. Before I was old enough to get served legally in a pub, I’d go up to Trafalgar Square with my mates where you could watch some eejit dive into one of the fountains and break his neck, swig from a bottle of cider you’d swiped from an offie on the way to Central London and kiss random girls in the crowd at the stroke of midnight. I’m not talking polite pecks on the cheek either, I’m talking full-on snogs with a complete stranger and a grope if you fancied your chances. And nobody seemed to mind – it was the sort of behaviour that would get you arrested and banged up for a lengthy spell with some nonce newsreader from the BBC nowadays, plus an entry on the sex offenders register for good measure.
When I got a bit older we’d just go to the local pub. It was one of the best nights of the year. Every pub would have a disco with a DJ and even if you were a regular and you’d drank in that pub 360 day of the year you still had to buy a ticket in advance to get in on NYE. At midnight you all joined arms and sang “Auld Lang Syne” – well we’d sing the first two verses anyway as nobody knew the words after that. There’d be an extension till 01:00 and you’d throw up in the gutter on the way home. You’d have to walk as all the cabs were booked up and charged treble their usual rates if you got one. This was long before Mohammed in a Toyota Prius arrived on the scene, obviously.
And nowadays? Most of the pubs near me close at about 20:00 through lack of trade or to keep the riff-raff out, and with the only other option being a gala dinner at some naff restaurant that charges £200 a head, it’s an early night for most with nothing but Jools Bleedin’ Holland on the telly or some alternative woke shite on Channel 4. Kenneth McKellar must be turning in his grave.
But my New Year this time around wasn’t entirely quiet as it happens. Maybe not NYE itself, but a couple of days after. My New Year started with a BANG. And not just one big bang either, there were lots of them, along with booms, clangs, clunks and high-pitched screeching noises…
Yes, it was back to business as usual very quickly in the New Year; I was up at my second home the Royal Sussex County Hospital for my latest MRI brain scan. It’s too early to ascertain if the CyberKnife treatment I had in November has been successful – this was just to see if there was any evidence of new tumours.
They’ve got new machines at the RSCH, much quicker than the old ones but just as noisy. Not my first rodeo, obviously so I knew what to expect. The lovely radiographers give you little earplugs and headphones to drown out some of the noise. They used to ask you what type of music you’d like to hear – my stock reply would be anything apart from hits from musical theatre (sorry, Marc) or reggae. You don’t get a choice now, it’s just a loop of calming and soothing mood music whilst you watch a screen showing CGI moving images of waves gently lapping on a tropical beach.
As I lay there on my back, my mind started to wander. I hadn’t made any New Year resolutions. Maybe I should look for a new challenge this year, something like line dancing, martial arts or perhaps tap. Alternatively something stimulating for the mind – a Home University course in 17th century Eskimo Folk Literature or meeja studies like all those students do nowadays. But they would be totally worthless, naturally, and I’d end up poor, living in a damp basement and working as a barista….
I couldn’t make up my mind and before I knew it I was all done. The machine slid me gracefully out of the metal donut and the pretty Spanish radiographer was helping me off the plank. I felt a bit giddy – I generally do after those scans – and she kindly put one arm around my waist to steady me, took my hand in hers and supported me as I found my feet. As it was New Year my mind instantly raced back to those halcyon days in the early 70’s in Trafalgar Square, but I resisted the temptation. Too old for all that nonsense now and I didn’t much fancy sharing a cell with the likes of Rolf, Max and Gary, not with everything else coming up.
Going into 2025 my mood was uncharacteristically optimistic. I was feeling generally well, my cancer seemed to be stable and under control and my fitness levels were returning after non-cancer related surgery.
All I hoped for, moving forward, was a year without any further major medical issues or dramas – a chance to worry about other things apart from my health. My golf swing for example, or the fortunes of the not-so-mighty Hammers.
But sadly it wasn’t to be. It was barely six weeks into the new year, the middle of February, when I learnt that a new tumour had been identified on the left side of my brain that would require urgent treatment.
Reluctantly I had to surrender my driving licence. Again. That wasn’t the worst aspect of the diagnosis but the one that kind of hurt the most. I love driving and I had worked so hard to have my licence reinstated some three months beforehand, and now in accordance with DVLA regulations I had to rip it up again. God knows when I’ll ever get it back.
It all rather set the tone for the rest of the year. After having the CyberKnife radiotherapy treatment on that tumour in March and recovering from the lengthy after-effects I was back at the Royal Marsden in November for two more tumours to be zapped.
Every year will inevitably have its highs and lows, but 2025 seems to have had more than its fair share of downs, not just for me but in general. A good friend said it was something to do with the alignment of the moon, or something like that, not that I believe in all that stuff.
Losing three good friends, taken well before their time, didn’t help. Two of them succumbed to Bastard Cancer and the third, dear Martin, just finally ran out of bravery, optimism and positivity.
Looking back on the negatives isn’t going to do any good though. There were highlights and good times in 2025 too. Keeping in touch with old friends, making new ones at Macmillan’s and elsewhere, having the craic, great nights out, travelling to new destinations as well as back to our beloved Portugal etc. And most of all there was the achievement of lasting ten years since my initial terminal cancer diagnosis. I’ve got another milestone to look forward to and celebrate in the near future, and hopefully positive scan results later this month….
And so it’s with renewed optimism that I’d like to disregard the bad, concentrate on the positive, look forward and wish everyone a very happy, healthy and prosperous New Year. Let’s all hope 2026 turns out to be a good one.
I doubt if many will be reading this week’s blog post. Surely you have better things to do on Boxing Day, like heading out to the sales to buy even more stuff you probably don’t need or want; maybe you’re off to a sporting event or just spending the day pigging out on mountains of cold meat, bubble and squeak and assorted pickles (my favourite).
But I’ve published a blog every single Friday morning without fail for over ten tears now, and even with Boxing Day falling on a Friday this year I can’t break the sequence.
It’s meant I’m having to disturb our usual Christmas Day festivities as despite what you may have believed I don’t get up at 04:00 every Friday morning full of creative juices and rattle off approx 800 words of mainly meaningless rubbish or updates on my battle with Bastard Cancer in time for it to be published by about 07:00. No, I’ll always sit down and prepare my missive on a Thursday afternoon and have it ready to press the “publish” button on Friday morning after a final quick read-through.
So, I’m composing this message on Christmas Day with a large glass of something alcoholic beside me, and I’m going to keep it mercifully brief.
I just want to say it’s another Christmas I honestly thought I’d never see when the C Bomb dropped in 2015. The support I’ve received from everyone who has been kind enough to follow me on my journey has and continues to mean so much to me and I’d like to take this opportunity to send heartfelt thanks for your continued indulgence and best wishes to you all from the heart of my bottom for a very Merry Christmas, sorry, Boxing Day.
Christmas is generally a low-key affair in the Shay household. We don’t have any kids, or much of a family to speak of, so we are immune from the general insanity that grips the UK in the lead up to Christmas. That doesn’t mean we don’t have a good time, we just don’t get wrapped up in all the panic shopping, stocking up on massive quantities of food that will be thrown away over New Year or spending fortunes on presents for relatives that don’t particularly like you, purely because you feel obligated to.
Our Christmas shopping will probably consist of a swift dash to Marks & Spencer on Christmas Eve to grab a turkey crown, a few satsumas and a bag of sprouts. Which is a good thing as I am particularly fond of sprouts.
Over the past few years we have tried to book a holiday in the week immediately before Christmas; everywhere is deserted plus it’s nice to get a bit of winter sun and avoid the retail madness in the High Street. Sadly we had to cancel this year’s trip (to Gran Canaria with friends) as I wasn’t sure I’d feel like travelling too far afield following my recent CyberKnife radiotherapy treatment. It’s turned out I was right – I’m “getting there” but still short of match-fit.
And another reason to keep clear of the shops is the bloody Christmas muzak. Even the thought of it fills me with horror. How those poor shopworkers can tolerate that infernal row on a continuous loop from the end of October for two months is beyond me. They have my every sympathy. I can’t stand it. No wonder the shops are dying, and everyone buys online.
I‘m blaming Elvis; he kicked it all off in the 50’s with Blue Christmas and countless other grim Yuletide musical tragedies. Since then every year we get assaulted by Slade, Wizzard, Cliff Sodding Richard, Andy Williams, Paul McCartney, Mariah Carey with that screaming final note that makes my ears bleed, Jackson 5, Shakin’ Stevens…. The list is endless and it’s all sh*t.
Even Kylie has jumped on the bandwagon this year. Now, I’m partial to a bit of Kylie but that song “XMAS” is an abomination and makes me want to throw myself off the end of Brighton pier. I also secretly pray that Chris Rea’s car would fail its MOT and Bruce Springsteen gave Santa a dodgy Tom-Tom last year so he didn’t come to town this time.
Until, that is, I happen to hear the dulcet tones of Kirsty MacColl and Shane McGowan bash out their rendition of Fairytale of New York. Nothing quite encapsulates the birth of Christ like their immortal line: “You scumbag, you maggot, you cheap, lousy faggot…..”
I’m joking, naturally. “It’s the most wonderful time of the year.” I’ll be singing along to all the favourites with the rest of you, whilst swigging from a bottle of Bailey’s and gorging on mince pies come the Big Day. Of course I will.
It was one of those really “dark” nights as I made my way out through the sliding doors of the Royal Sussex Cancer Centre on Monday evening (8th December). It’s strange how some nights seem darker than others, and this one was a particularly inky black. The wind was blowing off the sea, fine drizzle was falling as I tightened up my lucky tartan scarf in readiness for the short walk home.
Fortunately, although we never planned it of course when we moved to Brighton, our flat is only a stone’s throw from the hospital. It’s the one with the broken windows.
I walked slowly, it’s downhill all the way, but as I did I reflected on the events of the preceding month. I’d had an MRI scan on my brain, a full-body CT scan, a pre-op appointment at the Royal Marsden in Chelsea, three CyberKnife stereotactic radiotherapy treatments also at the Marsden, a consultation with the fragrant Dr Sarah Westwell, an appointment at the Outpatients Dept for blood tests and I’d just emerged from having my 104th infusion of JJ at the chemo ward.
(If you’re new to this journal “JJ” is the name we’ve given to Pembrolizumab, the cancer-fighting immunotherapy drug that’s kept me alive since 2015. It’s delivered intravenously, looks and smells exactly like chemotherapy but a different animal altogether. It was on the second session we decided that “Pembrolizumab” was too much of a mouthful, I came up with “Jungle Juice” which in turn became “JJ.”)
But as I made my way along Edward Street the realisation struck me that after all those appointments, treatments and associated stress, all condensed into such a short period of time, I’ve got nothing booked now until 5th January when I’m scheduled to have another MRI scan to see if any more new cancerous lesions have formed on my brain. Sure, I’ll still be covering my usual shifts as a support volunteer at Macmillan, but I’m not counting that – I’ve got no actual cancer-related appointments for four whole weeks, and anyone who is sharing experiences similar to my own will be able to recognise what a relief that can be.
So, the best part of a month “off”. A chance to build my fitness up and work off the fatigue that’s gripped me since the CyberKnife treatments, eventually get back on the golf course and take long walks along the seafront that I enjoy so much.
What’s more I’ve been something of a hermit as far as socialising is concerned; it’s time to get out and about, spend time with friends, back to the pub and restaurants – surely there’s something coming up that’s worth celebrating in the next couple of weeks, apart from my temporary but welcome reprieve from the treadmill of Bastard Cancer?
I’ve now been discharged by the Royal Marsden following the recent CyberKnife procedures on those pesky cancerous tumours that were recently discovered on my brain and returned to the tender care of Dr Westwell’s team at the Royal Sussex County Hospital.
The handover was formerly confirmed by a charming lady called Lizzy who called me by phone for a follow-up consultation on Tuesday (2nd Dec). The call was predictably punctual – I’ve come to expect nothing less from anybody connected to the Marsden – and with genuine concern for my wellbeing and progress in the week since the last of the three stereotactic radiotherapy sessions.
I was pleased to be able to report that I was finally sleeping almost normally; as much as six hours a night or more, which after the interminable insomnia whilst I was taking all the steroids during and just after treatment was a blessed relief.
But the extreme fatigue, that was a different matter. Lizzy was totally understanding and empathetic when I tried to explain how debilitating that could be. It’s difficult to articulate how it feels – I even turned to AI and it came up with terms like “profound and overwhelming exhaustion.…difficulty concentrating….brain fog….lack of motivation…” Yes, all of those. She went on to confirm, not that I didn’t know already, that it’s all down to the brain reacting to the massive concentrated blasts of targeted radiotherapy smashing the cancerous cells and a few more on the periphery of the lesion to try to ensure the cancer is obliterated with minimal chance of returning.
Lizzy mentioned a common phenomenon known as the “Two Week Peak.” Patients often found that although fatigue can last for weeks or even months post treatment, the condition typically reaches full effect after two weeks. Well today (Friday 5 Dec) will be fourteen days since the first of the sessions and I love a challenge, especially where Bastard Cancer is concerned, and having been inspired by talking to my dear old friend and ex business partner Martin and learning of his resolve in the face of his latest setbacks, I was determined to push on.
So on Tuesday afternoon after my phone call with Lizzy, and with massive encouragement from the Blonde, I went out for a walk to our corner shop. It was the first time I’d left the house in almost a week. They seemed pleased to see me at the shop, albeit surprised I didn’t pick up my usual order of eight cans of Sam Miguel, just a small bag of Fruit Pastilles and a pack of Maltesers for the Blonde. I was tired afterwards, knackered in fact, but it was a start.
Then, on Wednesday, a bit further. All the way to Lidl no less. I like their fresh fruit. I resisted the temptation to buy a marzipan reindeer and an inflatable LED Christmas Santa, a snip at £19.99, from the Aisle of Shame, and took a slow walk back.
And so it has continued through the week, slow walks, a little further each time, nothing too strenuous, often a doze afterwards, but building every day. You wait, another couple of weeks, forget the peaks, and the troughs for that matter, I’ll be right back in the game.
I’ve already waxed lyrically about how marvellous they are at the Royal Marsden Hospital in Chelsea. But you don’t need to believe me – just ask any of the patients past or present, the customers in the Kosovan Café across the Fulham Road enjoying their paninis before or after treatment, or any of the countless people I have met throughout my involvement with Macmillan over the past 9 years. They will all say the same – the Marsden is in a different league when it comes to cancer care.
I saw that yet again when I arrived for my latest bout of stereotactic radiotherapy CyberKnife treatment last Friday 21st November. You may recall from last week’s blog that they had thrown a bit of a last-minute curveball by announcing that I would need to make three trips to Chelsea instead of one. I didn’t question their change of programme – I know I can trust them implicitly to do what’s best.
I was greeted in the waiting room like an old friend, and promptly led by Rosemary the charming CyberKnife technician to the dedicated treatment room. It was just after swiping her access card in the digital reader and getting me settled on the plank that she explained why one trip had become three.
“We are treating the new, little, tumour today Bill, should take no more than an hour.”
That confused me; what new little tumour? I had been told I was there to get an old tumour from 2023 blasted, the one that had “woken up” in August.
“No, we’ll deal with that in two sessions on Monday and Tuesday. This is another new tumour, we spotted it in the last scan.” A shock, but at least I didn’t have time to dwell on it. I was quickly locked in with the mask restricting every movement of my head and the CyberKnife machine was spinning and swooping around, zapping me from all angles like some demented “nodding donkey” that you see on those TV programmes about oilfields in Texas.
I was out within an hour as promised, home for the weekend and back again on Monday and Tuesday as booked for the remainder of the mercifully shorter sessions.
All along I was taking my steroids as instructed. They were keeping me awake at night as I expected, but far worse this time. Rosemary explained that it was probably because I was having two separate sites zapped on virtually consecutive days and it was the intensity of the blasting that was causing the insomnia more than the medication. Evidently your brain doesn’t like having two bits fried off so close to one other.
So from last Friday I have been getting on average about two hours sleep per night. I am absolutely shattered. But the course of steroids stopped yesterday – I know things will start to improve. The discharge papers I received on Tuesday mentioned the likelihood of “extreme fatigue for some time” and “sleep disturbance for 4-6 weeks.” No shit, Sherlock.
But I still had to get out for a scheduled appointment with the fragrant Dr Sarah Westwell at the Royal Sussex on Wednesday afternoon 26th, for a debrief. She confirmed to me that my fatigue was expected, especially this time as I’d had a double-whammy, and pleasantly surprised that I wasn’t suffering with headaches.
But she was very mindful, as I was, that we had a problem.
Recapping, I had a new brain tumour become active and treated in March this year, the old one from 2023 woke up in August, and a further new one emerged two weeks ago. That makes three in well under a year. Despite good old Pembrolizumab (JJ) keeping the cancer in my body stable for so long it was starting to look like it could potentially have started to lose its effectiveness.
It could be time therefore to stop the JJ and look elsewhere for another drug to hopefully keep everything in check and stop the cancer spreading or developing further in my brain as well as my other vital organs. There are these new ‘BRAF MEK” inhibitors, they are the new kids on the block, with a good success rate. We could try those.
But before we do jump ship, Sarah suggested we organise another brain MRI scan for the first week of January. This will be far too early to monitor the progress of the two lesions that have just been treated – they will still be swollen and healing, taking typically about six months to settle – this will purely be to see if anything NEW shows up.
So that’s the plan. Brain scan early January and see her in her usual Wednesday clinic for the results and discuss our options. She suggested an appointment on 14th January, but caught my eye and mentioned that another week wouldn’t make a busting difference – we agreed to defer that consultation until the 21st January. She knew why, and I guess some of you may too.
It’s Thursday afternoon (20 November). I’ve just finished the blog that I was planning to post tomorrow morning, but I’ve had to rip it up and start again, as things have changed.
The reason being I have just had a call from the Royal Marsden Hospital in Chelsea. I have an appointment there tomorrow, as you may recall, for my 4th CyberKnife treatment on a cancerous tumour on my brain that has become active again.
The registrar that called explained that the MRI & CT scans they took at the Marsden when I reported there two weeks ago have shown the tumour has grown further and is now “borderline” and above the threshold for just one blast of concentrated and targeted radiotherapy. I’ve been told I will now have to have a course of THREE treatments spread over tomorrow, Monday and Tuesday. I also learnt from the call that this is particularly important as CyberKnife is not as effective when dealing with Melanoma as it is with other cancers. I never knew that. I’ll also need a much lengthier seven-day course of steroids to minimise the likelihood of brain swelling, detritus and oedemas from the concentration of treatments. Can’t wait for that.
I guess it’s what we used to call in the old days a “belt and braces” approach. I know I am in the best possible hands and I’m grateful the team there are “all over it.” I have absolute confidence in them and I always try to remain positive but sometimes I really do get tired of all this shit, and to be honest that’s just how I feel right now.
Few will argue that the NHS in its current state is a flawed operation. It eats up an annual budget of approx £200 BILLION, employs 1 in 25 of the adult population in England, but should you suffer from a non-critical condition like rheumatism or earache it’s not uncommon to wait a year for a routine appointment. Or longer.
No such criticism can be levied at the fragrant Dr Sarah Westwell and the members of her oncology team at the Royal Sussex in Brighton of course. I literally owe her and them my life and I can’t praise them highly enough. The same goes for all the nurses who also battle tirelessly against an ever-increasing workload in the chemo ward at the Sussex.
However, other branches of the NHS that I am obliged to regularly encounter on my journey are nothing like as commendable. I have a constant battle to get my regular scans booked with a team who seem determined to make a patient’s life as difficult as possible and appear to take great exception in fulfilling the task for which they are handsomely paid – making bloody appointments, which for some unfathomable reason once booked are then confirmed by post. Have they never heard of email and text, and are they not aware that our postal service is about as reliable as a Labour MP?
But on the other side of the coin, last Friday (7th November) I had to make my way to the Royal Marsden in Chelsea for the preliminary appointments in preparation for my fourth CyberKnife radiotherapy treatment, booked for next Friday 21st, on a brain tumour that has unfortunately become active again. And these guys really are different gravy.
We arrived bang on time for the first appointment at 10:30. The radiotherapy department is located in the basement of the building – we’d been there several times before so we didn’t require the directions that were offered by the charming receptionist who greeted us at the main entrance. As we made our way downstairs everyone we passed – doctors, nurses, porters – all smiled and said hello. My bum had hardly touched the chair in the waiting area before I was whisked off to have the first of the scans on my brain that were required, the dreaded MRI, but before that a blood test to ensure my readings were in order.
From there it was straight to the CT scan on my brain (I don’t know why they need to do both. – I didn’t think to ask) and the mask fitting. I was greeted by Chloe, the radiographer in that department, who I recognised from my last visit, and I was flattered to learn that she recognised me too. As soon as the CT machine stopped whirring, I was slid out of the big metal doughnut so the hot latex mask could be placed tightly on my face and left to set, but not before holes were made by my mouth to allow me to breathe. Eventually the mask was peeled off my face and carefully placed in a container ready for next Friday’s procedure. I noticed that they had marked on the mask with a blue cross where the radiation was to be targeted.
As I jumped down from the scanner, Chloe asked when I’d last been there. I told her it was in March this year and explained why I had returned so soon.
“Don’t worry, we’ll get that sorted for you Bill” was her cheery reply. She even remembered to call me Bill, not William, which was really kind of her. She told me how she liked to go to Brighton, especially the Lanes.
From there it was straight to the in-house pharmacy, the last port of call, to collect the steroids that I would need to take during and after the CyberKnife to prevent and reduce the likelihood of swelling on the brain and oedemas.
As we walked back out into the bright sunlight on the Fulham Road I glanced at my watch. It was 11:45 precisely. I had had a blood test, an MRI scan, a CT scan, a complex mask fitting, collected my drugs, all within the space of 75 minutes.
That’s what the NHS is capable of. I defy anyone to receive better treatment anywhere in the world at any cost. And Chloe’s words still rang in my ears as we jumped on to the tube at South Ken station.
“Don’t worry, we’ll get that sorted for you Bill.” And, you know what? I rather think they will.
BILL'S BLOG 