This could be anywhere. It’s not…
This could be anywhere. It’s not…
Life’s a funny old game. Full of coincidences and quirky turn-ups. During the week I was looking in the window of my favourite bookshop, Broadleaf Books in Abergavenny, when I spotted a photo book called Urban Nomads by the American documentary photographer Harvey Finkle. The shop was closed, so I emailed Jo, the owner to ask her to hold on to it for me until Saturday. This morning I collected it, had a chat, photographed Jo’s grandson making his first sale, and decamped to a nearby café for strong coffee and poached eggs. Once there I looked through the book, a strong body of work about the displaced and homeless in Tent City, Philadelphia, in the 1990s
A few years ago, on a cold December day, I was stood at a bus stop in Bristol with my clothes and a few items of toiletries in a bag. I’d just finished a disastrous relationship, and to add insult to injury, my car had just been written off by the local MOT station. I was lucky that I had a good job, but still I was effectively homeless. After a few days of sofa surfing I found a room in a house on the edge of one of Bristol’s largest cemeteries, as the lodger of a woman who appeared to be fairly eccentric, but claimed to be a film-maker and ex-photojournalist, having been the personal assistant to a well known member of Magnum photo agency. I was easily impressed in those days so took the room, despite some reservations. The house was a meat free zone. Okay, I can cope with that; there was a canteen at work. A couple of days later I moved in, and it became very obvious almost instantly that the landlady was well beyond eccentric. I was immediately given chores to do, before I’d even unpacked. The stair carpet and bathroom needed scrubbing with vinegar and baking soda. Other cleaning products were banned. Vacuum cleaners were prohibited as they scared the ancient, flea-ridden cat. There was another lodger, Angelique who stayed in her room. I was told by the landlady that Angelique wasn’t to be trusted.
Back to the meat issue…..It quickly transpired that it was only the human inhabitants of the house who weren’t allowed to eat meat. The cat was regularly cooked chicken and salmon by the landlady, and when she went away for Christmas, leaving Angelique, who turned out to be lovely, and me to feed the cat, we were expected to do the same, but not actually eat any ourselves. We may have ignored that, as we sat around the fire wondering just how the hell we had ended up in this predicament, both in our forties, and both fairly well paid and well qualified.
To cut a long story short, when the landlady returned from her hippy-dippy gong bath and Dance of the Mystic Winds retreat in Devon, the cat became ill and was taken to the vet’s, where it was cannulated, put on a saline drip, and given very expensive medication, whilst being kept in for observation. I was presented with the bill for £800, and called every name under the sun, whilst being accused of being a psychopathic, wannabe cat killer. Angelique by this time had fled the house, and I followed very quickly, in fear that if I stayed I’d probably be subject to worse than verbal abuse. When I returned a couple of days later to retrieve my belongings, they were thrown at me from the top of the stairs, and more abuse and accusations were screamed at me. I still have it on my phone, as I covertly recorded a Voice Memo. She called the police, who when they arrived, could clearly see who the antagonist was, and retrieved my belongings for me. The law couldn’t help me get my £500 deposit back, which she refused to return.
So, what does all this have to do with the book I bought today? It goes to show that no matter how fortunate we are in life, however secure we feel we are, we are all just one or two steps away from complete upheaval, from our lives being turned on their heads. Those people we see sleeping in tents in shop doorways aren’t really that different to you and me. We’ve just had the breaks. The reason I chose to share this today, is because as I sat there eating my delicious breakfast, and drinking good coffee, whilst wearing expensive clothes, and knowing I had a beautiful home to walk back to, I opened the book, and out fell a faded newspaper clipping of a photograph by a film-maker and photographer who was once the personal assistant to a well known Magnum photographer, and who still owes me £500. I hope she’s not done the same to too many others, and ironically the clipping was from Peace News! Signing off now, as the four cats need feeding, and it’s time to put the sausages on for supper…..
Forget flash cameras, expensive clothes, vintage guitars, stacks of vinyl records, books that cost an eye-watering sum. Forget trips abroad, new boots, French workwear, and furniture by obscure mid twentieth century Danish designers that no-one else has heard of. Forget gear acquisition syndrome. All of these things, to be fair, are nice, and pleasure can certainly be derived from indulging their muse, but if there’s one thing the last two years have taught me, it’s this……
You can have all the trappings of a stylish, vaguely aspirational life, but without these two things, you’ve got nothing. Nothing! Luck and learning.
Some people might think I was unlucky to be diagnosed with bladder cancer. I don’t, I think I was born lucky. Lucky it was non-invasive. Lucky I live in a country with healthcare that’s free at the point of use. Lucky I have the support of a loving partner and family to support me when I’m vulnerable. Lucky I have colleagues and friends who still take the piss out me and don’t walk on eggshells around me or wrap me in cotton wool. Lucky I can write about it, which is of course attributable to learning. Lucky I had a good education, but more importantly, very lucky that since my diagnosis, I’ve been in the care of a team of clinicians, from Consultant to Healthcare Assistant, via Nurses and ODPs who have all benefitted from learning related to their speciality, ensuring expert, holistic care and surgical intervention. Behind the scenes of course, hidden away in laboratories and seldom seen rooms are the oncologists and histologists, deciding courses of treatment, and analysing specimens and samples, keeping not just me healthy, but giving all those who need the NHS in their hour of need, the best possible chance.
Take another step back and you’ll find the researchers, constantly learning new ways of fighting cancer. I’m lucky that my cancer has given me the opportunity to shoot a photographic project for a national cancer research charity. Luck and learning combined. Through cancer, I’m learning how lucky I am.
So what’s this all about? Life is short, so why not do something to celebrate being born lucky, and remind myself of the importance of learning? Something personal, something permanent, but ultimately something frivolous. Something that makes me smile when I see it, but is also a conversation starter. When I started writing about my cancer it was partly a way to take ownership of it, but also to start a dialogue, try to break down taboos and if possible help others deal with whatever battle they may be facing. Ink on the page has become ink on the skin. Another tattoo, this time a horseshoe to represent luck, and an open book to represent learning. Craig, the tattooist, warned me as he was shaving the hair off my inner elbow and bicep in preparation, that this was a very painful place to be tattooed. Bring it on, I said! Let me tell you what pain is, but then I decided that he really didn’t need to know about having a camera shoved through your prostate, particularly as he was about to steady himself to etch fine lines on to my skin.
Here’s to luck and learning but also to doing stupid things!
I’ve waited a while before updating my cancer blog, to give myself a chance to scratch my chin and ponder my place in the world. Two weeks ago, or was it perhaps three, I went on a hot date. The one where I go into a room with three or four strange women and lie back on a bed, and try to make polite and humorous conversation as they all stand around me in a semi-circle, and insert a camera into my bladder. Yep, there’s still only one way in! Grip the trolley sides and cough!
So there it was, in all its glory, looking slightly the worse for wear, a bit scarred, a bit like a piece of wrinkly pink tripe (I’m talking about my bladder here!), but most importantly free from gremlins. No multi-fronded little fuckers clinging on to my epithelial lining and waving hi at me, tauntingly. A clear test! That’s now two in a row. Get in!
This was obviously good news. This obviously is good news! The room breathed a sigh of relief. One thing that is really noticeable when you have an ongoing condition that requires regular checks is how invested the staff become in the welfare of their patients. We have a laugh. We go through this together.
The reason I sat on this one for a while before committing my thoughts to the wider world, is because I wanted to be sure what those thoughts were. I needed time to process the good news. The language around cancer is complex to say the least. We all have different ways of referring to our predicament, and we all have ways of talking to other people about their predicament. Clear is fabulous. In the eyes of many people though, understandably, it’s all clear. It’s not, physically or mentally. That day is a good way off. I hope it comes. It might not of course, and that’s the reality of cancer. I was chatting to a friend a while ago who revealed to me that he had had leukaemia many years ago. Physically, cancer is well and truly in his past, but every time he has a cold, the nagging feeling that it might be coming back is there, somewhere in the back of his head. That’s cancer. It doesn’t define you, but it changes you. It shifts your perception, not always in a bad way. It just gives you a more acute take on where you are in the grand scheme of things. The last year has probably been some of the most focused and creative time of my life. At times I’ve felt like every idea I’ve had has been a good one, every time I’ve picked up a camera or a pen I’ve felt inspired. I’ve been running on adrenaline, keeping strong. All of my effort has gone into fighting. Cancer gave me a kick up the arse. In some ways getting two clear checks has taken the boot away. Don’t get me wrong, I wouldn’t swap that result, but the driving force has been taken away. I can sit back now and take a deep breath and assess where I am. I feel like I’ve slumped. This weekend I’ve not picked up a camera. That’s rare. It’s usually welded to my hand. I feel tired. I’m allowing myself the space to do very little. Write a few words, pick up a guitar, go through my photography book collection, but also just sit there and stare at the wall with a coffee and a biscuit. Things are sinking in, more slowly now. The adrenaline fuelled sixteen months have been replaced by something more contemplative. I’ll take that for now. I’m still here to enjoy it. As for the future, although I can happily say that as I type I don’t have cancer, well that’s as clear as mud.
A long day in the driver’s seat fuelled by coffee, and nature needed to take its course. A swift stop off at Membury Services westbound, to take on more caffeine and lighten the load. One out, one in if you will. I’m standing up, whistling Dixie and reading the adverts over the urinals for funeral planning, and cures for erectile dysfunction (insert joke about stiffs), when I realise I’m surrounded.
They’re all there; a break on a return coach trip from London. The anti vaccine and Covid denial lobby. The porky bloke with acne who looks like he spends most of his time in the dark playing World of War, proudly wearing a yellow Star of St. David upon which is written “Genicide” followed by some scrawl that looks as if someone has dipped a badly dyslexic spider in ink and let it wander around for a bit. Blokes who are wearing combats and T-shirts emblazoned “Covid Con! We all have an immune system”. The corpulent middle aged man who looks like he’s moulded out of porridge; his ironed white T-shirt with the logo “Unvaccinated Lives Matter”. Last but not least, the punks! Imagine if scientists grew something in a Petri dish from a decades old specimen of John Lydon’s sputum, and there you have them.
I felt like I was watching a documentary explaining the Dunning-Kruger Curve in pictures.
We’ve all seen these Covidiots on social media, but I think I’ve just met and shared a piss with the Beta Variant. I need a beer and a Chlorhexidine shower stat!
I heard this evening that Derek Ford has died. I knew him from Abergavenny market. A huge man with a bigger character. He wore his scars from his battle with cancer visibly. Facial cancers are a bastard. He told me that he scared children, and people crossed the street to avoid him. It was their loss. An incredibly interesting man, Derek was invaluable when I was diagnosed with cancer last year. He didn’t offer sympathy, or false platitudes. He didn’t tell me “You got this!”. He didn’t offer advice. He listened and told me his story, his fight. People often, understandably, don’t know what to say. Derek did. He’d been there and bought the tee shirt. We spoke after he received a terminal diagnosis a few weeks ago. I asked him how long he had. “Oh, months rather than weeks” he said. He was wrong. Goodbye Derek. I’ll miss seeing your lumbering frame, and you peering through a loupe at jewellery in the market. Rest well big man!
The psychological battle against cancer is one that I’ve found myself surprisingly well equipped to cope with so far. By breaking it down into bite sized chunks, set dates and targets, I’ve managed to face each hurdle without breaking sweat too much. When I was wheeled into theatre back in June, my blood pressure was 105/65. Even the coolest of cucumbers was jealous, although that’s possibly a dodgy metaphor given the surgical position I was soon to find myself in. When the nurse discovered a new, small tumour back in December, I prepared myself for a procedure in March to remove it. All was good.
Newport in the rain…
Yesterday I went to work as normal and was setting up theatres for an operation when I received a phone call from the urology nurse. There’d been a cancellation and they could see me sooner. “Great, when can you fit me in?” The answer brought me out in a cold sweat and a frantic search in my mind for reasons why I couldn’t possibly make it. Work need me. My partner might not be able to take me. “We can do you tomorrow at 9am”. Shit!!!!
I spent the rest of the day building myself up into a state of nervous anxiety. I’m pretty good at covering it at work. Amazing colleagues help. The right balance of concern and taking the mick goes a long way. If you can’t joke about cancer what can you joke about? An evening sat on the sofa, however, with an alcohol free beer and a crime heist thriller on Netflix saw me restless and fidgeting. Fingers tapping on my glass, feet twitching, and exhaling loudly.
This morning we drove to Newport. I once spent several hours counting the bricks in a wall as I waited for a passport to be processed in Newport. I also had my first photography exhibition here. It’s a town I have mixed feelings about. Today, having arrived early we sat in the car, in the hospital car park watching the rain fall on the windscreen, a dismal day on multiple fronts. I was lucky, I was first on the list, and I know the surgeon, a nice man, from having worked with him on several occasions. The walk to the gallows was a short one. The tumour had grown a bit, and it appeared to have a mate next to it. There was a bit of confusion at first as I appear to have two resection scars from my primary operation, so it looks like I had two tumours removed initially. I definitely need three monthly checks but on the bright side, those checks will now be done on an operating list so that any recurrence will be dealt with immediately. It wasn’t pleasant. Having electro-surgery on your bladder wall with only local anaesthetic to ease the scope in, is a very strange sensation, but it could have been worse. And so it goes…
A pot to piss in…
I’m trying to find silver linings to every cloud. In these strange times being in a room full of people you don’t know and having a conversation almost feels like a social occasion. As well as taking the badness away, they made me a cuppa, gave me biscuits (four!), and I discovered the work of Martyn Webb, a local artist on the walls. Hospital art is usually atrocious. This was superb! I must investigate.
Back home now, drinking water like it’s going out of fashion, and remembering that sensation of burning as if a red hot wire is being poked up your urethra as you go for a piss. It’ll pass just like it did last time, at least I don’t have to wear inco pads and net pants. Another battle in the war won. Life goes on….
Since my diagnosis for bladder cancer on June 8th 2020 there’s only been two things I’ve not been able to bring myself to do. One of those I conquered last week, when I ate a serving of beetroot. The second I managed today when I went for a run. I first knew that something was wrong with me almost two years ago when after a run on a hot day I pissed blood. The aversion to beetroot is self explanatory.
Cancer teaches you a lot, and it changes you a lot. It’s still there, it’s not gone away. It can take parts of you away. If you’re really unlucky it can kill you, and there’s no shame in that. But it can also give you tremendous strength and focus. What it can’t do is beat you unless you let it. Strap your boots on and take the fight to it. It doesn’t have to be physical, it can be whatever gives you purpose. Put on some good music; there’s little in life that a good playlist won’t improve, and crack on.
Today was less than 5km, but psychologically it was a marathon. Next time will be easier. Cancer may one day rob me of many things, but it will never steal my simple pleasures away. While I can still enjoy suffering and beetroot, there’s still plenty to live for. The harder they come, the harder they fall!
My year this year, 2020, can be summed up by three words all starting with the letter C. Well, four words if you count cats, but no-one wants to read about a middle aged man and his four moggies. Although on reflection, that may get me more followers on Instagram and Twitter, and hey, it’s all about the likes! It’s been a while since I blogged, but today seems like a good day to do it.
Cameras and Covid; there’s the first two. The latter showed the general public what I could do with the former, gaining me a degree of very minor celebrity in certain circles. Nowhere near enough to put me in the jungle, but enough to be interviewed by several publications, have a book out, and have the front page of a national newspaper, who are also planning to feature me in their end of year edition in a feature on people who have had notable years. Thats one way of putting it!
The Queen memorably described 1992 as her annus horribilis. 2020 has been mine, although it’s not been my annus that’s been the problem, it’s been my bladder that’s been a bit on the horrible side. It seems that I can’t get away from cameras. As I wrote in a previous entry, I’m a person who prefers to be behind the camera than around it. The third C, Cancer, means that I have got used to having polite conversations with people, as they insert a long one into my bladder to see what lurks within. Anyone with even the most basic knowledge of anatomy and physiology can tell you that there are only three ways into a bladder; two from the kidneys, and one path that leads from the open air. That’s the one they chose. Lucky me! So this morning, as the urology nurse held my manhood in one hand, and a cystoscope in the other, I learned that the site on my bladder wall where a three centimetre tumour was excised in June looks pretty good, but not too far away from it, another papillary tumour is waving its little fronds around. The fucker! Bizarrely I felt very calm, and I discovered that after the last operation I had a stricture in my urethra which explains why I’ve had to adopt a slightly jaunty angle whilst having a pee. A straight on approach is once again possible!
I’d be lying if I said I wasn’t hoping for a clear screen this morning. I would however be naive if I said I wasn’t expecting some recurrence. Shit happens! Ultimately I’m on a journey and I deal with obstacles as they arise. If there’s anything this year has taught me about myself, it’s that I really am a stubborn sod. I’ve got cancer, but I’m back at work, I’m riding my bike, I go for long walks, I shoot a lot of photos, I play my guitar, I lead a full life, and I can still pee standing up. I’m the Duracell Bunny!
If I look back on this year, I’d have to say I probably wouldn’t change anything that has happened to me. Sure it’s on my mind all the time, and I mean all the time, but I now know my mind a lot better than I did at the beginning of the year. I processed a photo today that I shot on my first walk after my operation. It was a half hearted attempt at a self portrait. You do a lot of looking in mirrors when you have cancer. They tell you a lot about the person looking back at you. This mirror has a big smiley face on it, and that’s a pretty fair representation of where I feel I am in my life. At two years from initial symptoms to diagnosis, I could be in a far worse position, if here at all.
Keep smiling, and let the good times roll!
Some time in 2000 I was in a bookshop in Kingsbridge in Devon when I spotted a large book with a very distinctive cover by the photographer Chris Chapman, who at the time had a programme on ITV looking at the West Country through the lens of his camera. The book was called Wild Goose and Riddon, and was a stunning documentation of life on Dartmoor. I was self employed at the time, and living a hand to mouth existence, and couldn’t stretch to the £50 needed to buy it. About a month later I decided to treat myself but couldn’t find a copy anywhere as it had sold all of its print run. I decided to do a bit of detective work, and tracked down the author and photographer, who told me I would be highly unlikely to find one as there would be no more printed. I had just started collecting photography books and I was gutted. Two years later I found a copy in America, and paid £80 for it. Finally I had it.
Roll forward to around 2010, I’d lost my business to recession, and had split with my long term partner, and had no money in the bank, and expensive rent to pay. I started to sell possessions including the book, which earned me £180. I regretted it almost instantly. Along with Don McCullin, Chris Chapman is probably more responsible for the way I shoot than any other photographer. To call him a hero sounds a little over the top, but he’s a huge influence. It took me until two years ago to find another copy of the book at a price I could afford without selling a vital organ. I now have around two hundred photography books in my collection, and Wild Goose and Riddon is the prized possession.
This year after having some of my own work reach an international audience, I became friends on social media with a photographer called Helen Duvall. We were chatting on the phone one day about our work when she said she was helping another photographer put a book together. I asked who it was, and unbelievably it was Chris Chapman. I told her the story of the book and my admiration for his work, and she then passed that message on to Chris, who to my surprise, a few days later sent me a very long email congratulating me on my success, and later that week phoned for a chat. I sent him a signed copy of my book, and he sent me a signed copy of one of his. When I was diagnosed with cancer I received a beautifully worded message of support and advice and an invitation to visit him when I was next in Devon.
Last week I went to visit Chris and also met Helen for the first time. We talked, laughed, took photos, discussed technique and promised to do it again. Both I’m sure will become firm friends. He persuaded me to buy a certain lens, and I inspired him to buy a particular camera. This could be an expensive friendship, but it’s good to know that it’s possible to meet your heroes and they turn out to be top notch human beings!
In the classic British tragi-comedy Withnail and I, one of the central themes is the inexorable waiting for something to happen, and a sense of impending doom. In many ways that sums up the post surgical period. People often say that the hardest part of dealing with cancer is the wait for results from the histology department, and that’s probably a fairly reasonable assessment. One of the things that you can never understand unless you are unfortunate enough to have a diagnosis is how all pervasive the presence of cancer is on your being. It is there constantly, lodged in your mind twenty four hours a day seven days a week. It doesn’t matter how strong you are mentally, and I think I’ve coped pretty well on that front, it’s a war of attrition, and it wears you down, bit by bit, just through the act of thinking about it with a sense of expectation. I sometimes joke that I’m a bit like the Duracell Bunny, I don’t get tired. I didn’t, but I certainly do now.
I’m luckier than many. Distraction is a wonderful technique when facing uncertainty, and I live in a beautiful area in a beautiful house and garden, with access to family land and a cottage up in the Black Mountains which is a perfect bolthole to escape to. We spent five days there recently, almost off grid, reading, walking, watching wildlife. We took three of our cats. It was perfect. A couple of years ago I rescued an eighty year old camera from the cottage to prevent damp ruining it. Each time we go up, I use it to document the surrounding area. Perfect distraction.
Last week I spoke to the Nurse Practitioner and the Consultant dealing with my case. Good news. They are confident that my tumour was excised completely, and being the lucky bastard that I am, it was non invasive, meaning that it hadn’t put down deep roots into the musculature of the bladder, an altogether more serious prognosis. Not only is it non life threatening, I won’t be pissing into a bag anytime soon. A big relief on both fronts. It is however a high grade cancer with a significant chance of recurrence anywhere throughout the urinary tract, so with that in mind, I’m booked for a CT scan later this week to make sure that hasn’t already happened. One wait ends, another wait starts. Even a stopped clock tells the right time twice a day. I was offered the choice of a six week course of localised chemotherapy, but after a lengthy talk with the Consultant I declined. When I asked him what he would do in my situation, he said he wouldn’t have it, and that’s good enough for me. Catheterisation once a week is something I was keen to avoid. I do now have the pleasure of a flexible cystoscopy once every three months to check that I’m clear of regrowth of tumours. It’s all glamour, I tell you.
Last week, a month after my last ride, I tested the nether regions and got back in the saddle, and boy did it feel good. Thirty kilometres at a gentle pace, and it felt like I hadn’t been off the bike.. It’s the things that you take for granted that you miss, and it’s those things that are essential for giving you a sense of normality, speaking of which, tomorrow I return to work. I’m being eased in gently with three half days in the first week to see how I go. I was genuinely moved that my colleagues had a collection for me in my absence and raised enough for me to buy a bottle of Penderyn Welsh whisky for myself, and a bottle of gin for Hetty who has been my strength throughout this journey so far, and continues to be so. This is the only chemotherapy I’m considering at the moment!
I’m not out of the woods yet, not by a long shot, but I do feel like I’ve won the first battle in what may well go on to be a long war. As a friend who is a surgeon advised me, live in the moment, and hope for extended periods of peace. This is a life changing diagnosis, but I’m determined that it won’t be life defining. In many ways my condition feels all the more surreal, because although I’ve had a particularly unpleasant surgery, and had a large tumour resected, I have no visible scars. I look in the mirror and everything looks the same. In some ways I’ve improved, as I’ve lost a bit of weight through looking after myself a bit better. What scars there are are hidden, physically, and within my thought processes. I’m the same person, but I’m different. Nothing will ever be entirely the same.
I was talking to a friend the other day who looked completely taken aback when I told her that in some perverse way I’ve enjoyed this process. It’s taught me a lot about myself. Don’t get me wrong, if I had the choice, I wouldn’t choose it, but there is nothing like staring fear in the face to give you a sense of clarity and focus. It throws things into perspective, and certainly makes you reassess what is important in life. You’re a long time dead, so make your days on this earth count. I have a much clearer view now of what I want and need from my life, than I did a month ago, and I fully intend to get it. Every hurdle, every kick in the teeth, every pothole on life’s convoluted and often treacherous highway is an opportunity to grow. This is no different. I just need to remind myself of that when the nurse comes at me with a scope in three months time, and make sure she uses plenty of local anaesthetic, and plenty of lube!
The fight is still on, my cancer journey still needs to be completed. As Withnail would say……”The fucker will rue the day!”