So, 2023 is about to come to a close. I can’t say it’s not been eventful. I had a quick tally up on my trusty I-Cal and over the course of the last 12 months I reckon I have racked up the following:
2 major operations
2 minor operations
13 nights in hospital
14 doctor’s appointments
12 nurse’s appointments
8 cycles of immunotherapy (JJ)
10 bloods tests
9 scans *
Of course the number of scans should have gone into double figures, but the “urgent” MRI brain scan I was due to have this week was beyond the organisational skills of the NHS admin departments so I have been told I’ll just have to wait until the New Year for that. Something to look forward to as we head into 2024 I guess.
But I know I shouldn’t complain, over eight years now into a terminal diagnosis of Stage IV melanoma cancer. Physically I feel really well. I’ve pushed new boundaries as far as JJ is concerned – apparently effective for a maximum of two years, nobody has been on it as long as I have, and long may it continue. Sure, it would be nice to know the state of play with the recently discovered tumour on the left side of my brain and whether or not it has been successfully treated, but we are no strangers to the anxiety associated with my condition. It’s my lot, the price I pay and part of my life.
But one thing is certain at least. Whatever the outcome of that scan, when I eventually have it, the fragrant Dr Westwell will continue to do everything in her power to ensure I have the best possible treatment and care. That’s a given. We are so grateful to her and her team.
And while I’m handing out bouquets, I have a massive garland of gratitude to deliver. To you lot. I don’t personally know most of you but I want to say a heartfelt thank you to everyone who continues to read my musings each week and supports us on our journey. It means so much to me, honestly, and I couldn’t do it without you. Big hugs to each and every one of you.
Wishing you all a happy, prosperous and most importantly healthy 2024.
So, here we are, the Friday before Christmas. Not long now till the Big Day – I guess everyone will be frantically busy and with far better things to do than read my drivel, so I’ll keep this week’s missive mercifully short and to the point.
I’d like to offer apologies to anyone who was expecting a Christmas card from us this year, but we didn’t send any, choosing instead to make a donation to Macmillans. In a competitive and very crowded field of corporate arsewipes, the Royal Mail should get an award for being one of the most incompetent of the lot and I refuse to give them one more penny of my hard-earned pension than I absolutely have to. Their announcement recently that they were also imposing a “Green Surcharge” on certain deliveries put the tin lid on it. Britain at its current woke best…
I don’t have the technical savvy, or the interest, in creating an e-card (they are pretty naff anyway) so I guess you’ll just have to make do with the attached picture of me, taken earlier this week whilst the Blonde and I were enjoying a few days escaping the pre-Christmas hysteria in the UK on the lovely island of Madeira. A beautiful spot, which I recommend most highly.
Merry Christmas to one and all. I hope you have a good ‘un.
Ok, so last week’s scan results were a bit worrying and disappointing, but there was nothing I could do about that, and as my good friend Trish always tells me I have to concentrate on staying in the present, focus on how I feel now (really well, if you’re asking), and not to get carried away fretting about things that might, or might not, happen.
So it was with a spring in my step that I made my way up to That London last Friday for a Christmas lunch with the lads. Well, I’m saying lads, most of us are nearer 70 than 60, but we’ve been mates for over fifty years and we always have the craic when we meet up.
They certainly didn’t disappoint. We had a blast, but I’m a bit of a lightweight nowadays and by 6.30 I was ready to make my way home, so I gave each and every one a hug and made the short walk from Borough Market to London Bridge Station to catch the Thameslink train back to Brighton.
I didn’t have long to wait, but when the train pulled in it was absolutely packed. And it was rocking. There were a few commuters, but not many, sitting there feverously tapping away on the keyboards of their laptops, pretending they were composing urgent emails to the HR dept, but really playing Football Manager. Everyone else seemed to be out for a good time.
And what an eclectic mix it was. There were ladies with Selfridges carrier bags stuffed with presents from Primark, chattering so furiously they struggled for breath, a bunch of guys from Burnley in claret shirts, necking cans of John Smiths, on their way to see the match at the Albion the following day and making a weekend of it, singing songs about how Blackburn Rovers were sh*te. Then there was a gang of proper Essex girls on their way to go clubbing in Brighton, inappropriately dressed for the time of year, swigging Pina Coladas from tins and bottles of warm Prosecco through a straw, wearing tinsel garlands and Santa earrings, singing Christmas carols.
When we got to East Croydon a few passengers got off but a couple of Yardie wannabe gangstas got on, in hoodies, playing rap, or whatever it’s called, and a good few students in “Stop Oil” t-shirts and DMs, giggling about everything, off their nuts on cheap cider and Special K.
Plus me of course, but I was squashed up by the door by a twat cyclist who thought it was OK to bring his bike onto a crowded train. There’s always one, isn’t there, standing there in his cycle clips with his treasured Specialized mountain bike by his side. Why is it by the way that these blokes never take their silly cycle helmets or go-pros off when they get on the train? Is it a badge of honour something? This particular Bike Wanker’s helmet was, fittingly, purple in colour…
The train reached Burgess Hill, the cacophony was increasing, the door on the other side of the carriage to me opened automatically and a very old chap was standing on the platform. He looked a bit like Major Tom, but without the medals. He had the sort of confused expression on his face that old timers have when they have hit the wrong pedal in their Honda Jazz and driven through the window of their local Sainsburys.
A lady in a National Rail hi-viz guided him towards the train, but as he put his stick on the carriage floor and took his first nervous wobbly step on board, the strangest thing happened. The massed crowds standing by the door parted like the Red Sea in front of Moses and without exception all the passengers seated near the door got up and offered the old boy their place. One of the gangsta boys led him carefully by the arm and helped him into one of the now vacant seats.
“Y’all cool dere blud?” asked the kid from Croydon.
The old man probably didn’t understand him but nodded politely.
“I’m going to see to see my daughter in Brighton” he replied.
“Course he’s alright, he’s wiv us now, innit!” screeched one of Romford’s finest, passing him a bottle of Baileys across the aisle and inviting him to have a swig. He declined, but did graciously accept a Polo Mint from a bearded bloke in a frock sitting opposite him.
Before long the train arrived in Brighton. A couple of commuters jumped straight off, but amazingly, just as in Burgess Hill where he got on, as the doors opened almost everyone else patiently waited for the old boy to gingerly get down from the train; many guiding hands were offered, nobody pushed or shoved and he had almost a guard of honour accompanying him slowly along the platform. As he approached the barrier he saw his daughter, a ruddy faced lady in a duffle coat waving frantically. He waved his walking stick back almost triumphantly. By then I was almost walking beside him; he turned to me and said, almost proudly:
“There she is. It’s Elaine, my daughter. I’ve come to see her in Brighton.” The Network Rail ticket guy thoughtfully used his pass to open the barrier for the old guy and he was greeted by his daughter, clearly relieved that he’d arrived unscathed.
“Did you have a good journey dad?” she asked.
“Lovely dear, what’s for tea?” he replied as they walked arm in arm slowly across the concourse and the rest of us all made our separate ways, our paths unlikely to ever cross again….
I’ve no idea why I’ve told this tale, other than it’s true and the whole episode made me smile. Maybe it’s as near as I’ll get to a Christmas story, or maybe it’s just that there are many good people in this world and the proof was right there in the carriage of the 19:05 from London Bridge.
The latest period of scanxiety finally came to a close on Wednesday morning when we attended our appointment with the fragrant Dr Sarah Westwell at the Royal Sussex Hospital. There was only a one hour delay which wasn’t too bad, but it feels more like a week as you sit there in that gloomy corridor nervously waiting to be seen. We never complain though; she’s such a busy lady with an enormous workload.
As you may recall, this appointment had particular significance as we were to get the results of the most recent scans following the Cyberknife procedure in September at the Royal Marsden to blitz the new tumour that had been found on the left side of my brain in July.
Unfortunately we didn’t quite get the news we were hoping for. The MRI scan on my brain on 20th November, compared to the images from 29th July, revealed that the tumour appeared larger, not smaller, with further swelling surrounding it. However it was not clear whether this apparent increase in size had actually occurred between the dates of the July scan and the Cyberknife procedure in September, as it may have stabilised since then. There was also the possibility that this was due to “treatment effect”, that is to say we were looking at damaged tissue and evidence of trauma which was a direct consequence of theprocedure itself and the swelling a collateral result of my brain being blasted with a hefty one-off dose of radiotherapy. Maybe the scan was scheduled too early at nine weeks, and we should have allowed it a little more time to settle, or quite simply maybe the Cyberknife hadn’t worked….
At least there was some positive news – there were no new tumours reported anywhere on my body or brain. However the existing tumour in my left lung was reported as having increased both in size and activity, although unhelpfully the radiologist didn’t advise by how much. We’ve had similar scenarios in the past, tumours are not uniform in shape and can appear slightly different in size depending on the angle of the image, a bit like slicing an egg. Likewise activity of tumours can vary on a daily basis, they have up days and down days just like me and you.
But whatever way you look at, both tumours in my brain and lung were bigger than they had been reported previously, which was certainly not what we wanted to hear. Dr Westwell could sense how this rather disappointing development was really concerning to both me and the Blonde, but she looked me square in the eye and said three words: “Hold Your Nerve.”
She let that sink for a second or two then proceeded to explain. In her opinion it was too early to conclude that good old JJ (Pembrolizumab) had finally run its course. It deserved one last shot at least, particularly as the scans were to some degree inconclusive. She suggested I have my next cycle of JJ, number 87, as planned next Wednesday (13th) but urgently arrange for a further MRI brain scan between Christmas and New Year and a follow up appointment with her on 3rd January. Then she could determine whether other drugs or treatment might need to be introduced.
So, more waiting and worrying, nothing new there I suppose, but I know I’m in the best of hands. We trust her implicitly and have done for the last eight years. She’s got me this far, and as the lady says, I’ll just have to hold my nerve.
The Blonde and I were sitting waiting patiently in a doctor’s waiting room in Portugal on Monday morning when the door burst open. A guy walked straight up to the desk, leant over to where the two receptionists were busily going about their business and announced in a very loud and very Glaswegian voice:
“My name is Colin Mackintosh. I have a blood test booked for 2pm today. I won’t be able to attend it.”
Despite his ridiculous almost caricature accent, the Portuguese receptionist understood him perfectly.
“Ok, Mr Mackintosh, why do you have to cancel?”
“Because I have Covid. I just tested positive.”
The girl gave him an incredulous look, which was shared by everyone in earshot. But she retained her composure, thanked the idiot for letting them know but stopped short of asking whether he’d ever heard of a telephone. She ushered him out, muttering something in Portuguese along the lines of “get the fuck out of here you moron” and proceeded to spray and disinfect the whole of the office, apologising profusely to all the waiting patients, although clearly none of this was her fault.
We’d come to the doctor as the Blonde was suffering with an infection. Despite the fact we didn’t have an appointment the doctor agreed to see her, identified the problem and prescribed a course of antibiotics which thankfully have resolved the issue. But I was the one feeling nervous as we entered the surgery. I was walking back in time and revisiting a very painful period in my life.
To explain, this was no ordinary doctor’s surgery. This was the office of a German guy called Dr Habeck in Monte Carvoeiro. He saved my life eight years ago and I’d never had the opportunity till now to thank him. Just to refresh the story, I’d had what turned out to be a cancerous mole removed from the back of my calf in England in August 2015. I then had an operation on the NHS called a “wide local excision” to cut away a section of tissue surrounding the sight of the mole to supposedly ensure the cancer didn’t spread. It required over 100 stitches and left my left leg looking like I’d been attacked by a shark. We went to Portugal to recuperate, but fate took a hand, the wound became infected and that took us to Dr Habeck. I told him my story and he asked if the scan following the operation had confirmed that my body was clear of cancer.
“What scan?” I replied. He couldn’t believe that it wasn’t common practice for patients in the UK to be scanned following the removal of a cancerous mole. Apparently they automatically do this everywhere else in Europe, just not the UK. He immediately booked me a CT scan for the very next morning in Lagoa, fast tracked the results that afternoon and had one of his staff call me to arrange for me to meet him at his surgery later that evening. It was an out of hours appointment, long after the surgery had closed. We got there early and paced up and down the square where his surgery was located, waiting for him to arrive. He opened the main door, ushered us into his office, and delivered the bombshell. The cancer had already spread to my lungs and perhaps other organs.
There is very little in life that is as terrifying as hearing the words “you have cancer.”
He described the situation as “very serious.” He knew of a specialist in Heidelberg in Germany who might be able to help, I should go straight there, but we decided to come back on the first available flight to London, where further tests confirmed the presence of Stage IV metastatic cancer. I eventually met the fragrant Dr Westwell and started my treatment on JJ. The rest, as they say, is history.
But if it hadn’t been for Dr Habeck, and his professionalism, his diligence and his care, I never would have had the initial scan in Portugal. The cancer would have quickly spread and by the time I’d presented with symptoms it would have been too late.
So, eight years later I was finally back in that same office. I shook him firmly by the hand, looked him in the eye and asked him if he remembered me. He said he did and looked very pleasantly surprised. I told him my story since our last meeting and tried desperately to find the words to thank him for saving my life. But no words in English or German or any language could adequately express my gratitude. After he’d dealt with the Blonde’s issue I shook his hand once more, thanked him yet again, resisted the temptation to hug him, and left his office, back out to the square where we’d paced up and down all that time ago. And I’m not ashamed to admit that I had more than a single tear in my eye.
Then, yesterday (Thursday) we went back to the surgery, just to ensure the Blondes’s recovery was going to plan. Fortunately it was, we didn’t outstay our welcome, but as we left the doctor embraced me, smiled and said: “see you in another eight years.”
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