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My Journey with Bladder Cancer

Six hours after week four of my Bacillus Calmette-Guerin1 (BCG) therapy for bladder cancer, I was again painfully excreting some vile white, gonorrhoea like discharge from my poor swollen violated penis and this week it was slightly bloody. Ah yes! I thought, ‘Doris’ my Bladder Cancer Journey’, a blog, an essay, interruption, deviation, some helpful information and a cathartic process. So here are some words, which I may or may not add too. It won’t be the most joyous read and if you’re squeamish I’d give it a miss!

I am not medically trained, and this is not medical guidance in any way. This is my experience and journey of being diagnosed with and treated for Bladder Cancer.

Once upon a time… Back in 2010 I ran the London marathon so I’m a member of that minority and privileged club, posting a time of 4 hours and 30 minutes. I was delighted that I was not overtaken by the man with the fridge on his back and I just about beat the smurf. I ran for the Lymphoma Association following my then sister-in-laws diagnosis and treatment for lymphoma cancer. I think I raised nearly £3000.00 and oh such a privilege to take part in that spectacular event. The previous year I had ran the marathon in my beloved city Paris, where I lived and worked as a “bastard” chef. I was hooked on running despite all the injuries. I loved being a svelte like 14 stone, running a mean 10k and sub 1:50 half marathon. I secured a place for the 2012 London marathon and training had begun in earnest. One 10k Saturday morning training run, I started getting a stinging cystitis burning pain as I ran through Leigh on Sea, where the ‘beautiful people’ live. I diverted into the posh public loos just off the high street for a pee and to my horror out came this awful brown muck into the pan! Now this was pre yoga therapy days and I did not have much understanding about the parasympathetic nervous system, so I panicked a bit and thought shit! But composed myself and continued running because I was a knob! Some four hours later I was in front of a Doctor at Southend Hospital after my then wife who was a ‘Sister’ at the hospital had used her influence as a member of staff to get her husband seen. I recall going through a whole range of investigations, yet three months later there was no apparent reason for this haematuria. The condition happened a couple of times again after other runs, but my running career began to dwindle thereafter and there were no further episodes.

Fast forward to April 2018, I was taking a practice hike before my holidays with my beautiful sister and her entire family in Croyde when I had a sudden burning urge to pee! I managed to get to a public loo and to my horror I had a very bloody pee. I immediately booked a doctor’s appointment, but hydrated well and the blood in my pee had cleared by the afternoon. Seeing the locum doctor, whose English I could not understand, dismissed the condition as figment of my imagination, told me to go get some blood tests (I’ve since got this assholes name and an infamous ‘Stookes’ correspondence is making its way to my local GP surgery). A couple of weeks later said blood tests revealed nothing, maybe my cholesterol was a point over. The Devon holiday came a went , I cycled most of the Taka Trail, we walked the ‘Britain’s best walks with Julia Bradbury at Lynmouth’, ate some serious cream teas, Cornish pasties and just loved being consumed in the hilarity and safety of this part of my family. Back at the hallowed ‘Ghetto of Medway’ and I continued working up to the school summer holidays when I packed up teaching yoga for the summer. I was having the odd spot of dark/bloody pee, but then after bike rides and a reasonably long hikes I was getting increasing amounts of blood in my wee. Another appointment with my GP in early July and fortunately this time the ‘machine’ began to start up. I was fast tracked on the UK’s NHS cancer referral system or as my comical Zimbabwean doctor said “the British Rolls Royce of NHS health care”

26th July 2018 I underwent a bladder scan and non-anesthetised cystoscopy, the results from this were inconclusive and I was referred for a day stay for a cystoscopy. I bitched on like a baby as the probe was inserted into my chap!

7th August 7.00 am I was booked into the Sunderland Day Case Centre day stay for what I thought was a cystoscopy. A guy in handcuffs was in the admissions bay next to me and I noted just how the prison guards were leaking way too much about their own personal lives. This lad who had at least another seven years in prison would be using this newly garnered information to his own advantage back on the wing, that’s what offenders do. My procedure turned into a transurethral resection of bladder tumour TURBT where a “successful” procedure removed a 3-4cm mass from the bladder neck. A three-way catheter was inserted, post procedure. In recovery, after a slice of soggy toast, I was given a dose of chemotherapy via the catheter and spent the next hour climbing the wall! The chemotherapy had to stay in the bladder for an hour. The nurse in charge could see I was struggling and bless her, stayed with me for the hour. I was wheeled back to the Sunderland Day Case Centre where I was informed I would be staying overnight. I continued with overnight irrigation via my delightful catheter, there was a lot of blood and it was pretty damn uncomfortable. Clearly I was catastrophising about what was going on, my wanting to see my notes and observations (obs) was noted because my folder was removed from the end of the bed and kept at the desk. The nursing staff kept asking as they did their obs if I was in any pain? No I was not, but they kept plying me paracetamol. A ‘fine’ selection of culinary delights where consumed, delivered by some delightfully interesting auxiliary staff, supplemented by fat-bloke products supplied by my beautiful sister and her long-suffering hubby. I didn’t get much sleep, there’s a further narrative about the characters in my bay overnight but I’ll save that for the book. Just as I was dosing off at 5 am the big light came on again “cup of tea anyone?” Some 12 hours later catheter removed and despite struggling to empty my bladder and provide enough urine for the nurse in charge to discharge me. I was, at 5.00pm on 8th July heading home with a big pack of drugs 15mg codydramol and laxatives. I had been told that I would be called back to the hospital for a consultation with Mr Bhat as an out-patient.

9th August I attended the hospital for a CT scan I was unable to hold on for the full 10 minutes in between scans because I needed to pee, but the radiographers scanned me anyway.

Saturday 11th August 3am I was awoken by the most awful shooting pain in my bladder/groin/penis. Oh this was the pain the nurses were talking about! So began a semi addiction to prescription pain relief.

22nd August I met with Professor Sheriff and after his wanting to talk about the work I had done with young offenders, (that’s the bedside manner thing) I was thinking… c’mon fella cut to the chase! I was told all about my G3 pT1 TCC which had been removed. Translated that refers to the staging and grading of a cancer ‘T1’ the cancer has started to grow into the layer of connective tissue beneath the bladder lining, while ‘Grade 3’ are cancer cells that look abnormal and more likely to grow more quickly2. I was informed that “we” would have a further biopsy and if there is were no further tumours or if there was nothing sinister going on in the bladder I would be put on the BCG therapy program. ‘Prof’ as I figured out he is affectionately referred to by his colleagues, duly introduced me to Jenette my Macmillan nurse, part of the Macmillan nursing team supporting the urology department at Medway Maritime Hospital. Oh, the sister of death flashed through my mind! Jenette took me off for a chat, Professor Sheriff put a hand on my back and gave one those handshakes where his hand was slightly leaning over mine, the one that says ‘I’m in charge’ I straightened his hand up and told him I had read his thesis, but he’s a good guy. Jenette, my ‘new friend’ the Macmillan nurse was rushed, probably suffers with anxiety I thought, quickly went through my booklet and paperwork, giving me a free hospital parking letter, an NHS prescription exemption card. She made every effort to tell me that this was the cancer that could be beaten, but again apologised for not having more time. I went into work mode, “it’s okay don’t worry, I know you’re busy” I kinda wanted to get out of there. Proudly presenting my parking ticket to the car parking guy he made some quip “about being escaping early” to which I replied “it’s good and bad, the good being I’ve got free parking at the hospital the bad I’ve just been told I’ve got cancer” His colleague berated the guy for his lack of sensitivity, I said not to worry. I knew I was being a shit. I walked into the August sunshine and with each step to the car I transitioned from well person to cancer patient. I spent the rest of the day processing that, although deep down I kinda knew.

29th July Second cystoscopy and TURBT with biopsies taken, overnight stay with joyous catheter. Bless the poor student nurse was tasked with removing it the following day she was rather embarrassed, the Sister supervising said it was because we had to use a big tube for you Mr Stookes, I went into stupid mode explaining because I’ve got a big… The Sister intervened saying it needed to be big because I’d had a three-way catheter . In recovery I was given a shot of morphine!!! Oh wow, that shit just hits the body like a wave of numbness and tranquillity. I was conscious, maybe with a heightened sense of awareness but completely away with the fairies and talking more rubbish than I normally do. I was then wheeled through the hospital corridors on my bed back to the Sunderland Day Care Centre with a saline fluid drip being dragged along too. A torrid night of wakefulness although the pain was managed well at obs. It was a far more torrid night for the three guys in my bay. The young paralysed lad, who had been arguing with his relatives earlier, had pissed himself and lay in it for 3 hours because he was too embarrassed to say anything, a guy with dementia kept getting up naked, wanting to wander off and the other guys nose exploded! A young doctor came along with a bastard headlight strapped to her head as she patched him up.

17th September 2018 Appointment to meet Professor Sheriff or a member of the Urology team. I met Mr Guuman (I apologise I’m not so sure of the spelling of his name), I liked this guy. He asked me to explain what I knew was going on. Of course, I obliged, ending with “I’m here today to learn it there are any further tumours or if the cancer has spread.” Mr G replied “excellent you have very good understanding of what is going on” there was a pause, which seemed to last forever. There were no further tumours and the cancer has not penetrated the bladder lining so “we” are going to proceed with the BCG therapy program. Some further discussion with Mr G I was able to talk about the continuing pain I have been in with since the initial procedure and not being able to control or needing to go to for a pee all the time. Mr G explained that the instruments used for the cystoscopy were pretty brutal and invasive, he went on to say I’ve probably had an overactive bladder for several years and he proscribed me a life saver… VESicare3

Benefits – Having stopped working as a self-employed yoga teacher and therapist a little research and I figured I was entitled to the brand-new Universal Credit. Loved the disparaging looks and comments from G4S staff at Job Centre Plus, but I shared some opinions about their shite reputation which provoked some muffled ‘smart arse’ responses. My personal work coach tells me what I’m going to have to do to comply with Universal Credit. I then tell him what I will be doing, as in focusing on my cancer treatment, but then I can be very arrogant. I’ve recently sent off a Capability for Work form as apparently, I may be entitled to some additional money. I do get how complex it is to complete the Universal Credit assessment and I like to think I’ve got half a brain. As yet I’ve not got a Blue Badge for parking but I’m working on it!

Pain – I have experienced pain most days since I had the tumour removed. A dreadful burning sensation as I pee, quite possibly peeing over the wound from where the tumour was removed at the neck of the bladder? I have had a whole range of painkiller medication, going back to the doctors to check out whether I had an infection. Some days the pain has been excruciating and other days bearable. If you take too much medication you get constipated and dependent upon the pain relief, I’ve had a taste of Tramadol, that’s awful. Mindfulness was a real struggle to focus on, but when I did it worked as did finding my yoga practice, odd considering that’s how I make/made my living. Getting out for a daily walk is probably the best thing I do. I have joined the gym, been out on my bike and got an indoor bike trainer, as I’ve put on a stone in weight from comfort eating, eating crap!

The BCG Immunotherapy programme – Session four 22nd October. The Process – you are given six dates. No drinking for 4 hours prior treatment, you arrive hand over your bottle pee which is thrown away. Your date of birth is confirmed. You lie down on the bed, boxers/pants pulled down. The nurse cleans your chap, it’s cold then the nurse engages you in conversation as a catheter is inserted into the urethra, up past the prostate, any urine from the bladder is drained and then the 50ml of BCG is passed into the bladder. The catheter is then removed, you have to try and keep the solution in your bladder for two hours. Side effects, possible blood in urine, flu like symptoms, chemical cystitis, pain when peeing.

My first treatment I could only keep the product in for 1 hour and 20 minutes. The next three session I’ve kept the stuff in for the two hours, not peeing. But… oh the pain, I’m leaking some horrible white discharge, my pee stings and its awful for a good five or six hours after the two hours of keeping the BCG in.

After treatment you must go home, not share a loo, the product is infectious, and you need to clean the loo with bleach, not flushing for fifteen minutes, repeating for six hours after treatment so be careful!

If the treatment is successful, I will have another general anaesthetic biopsy and if there are no new tumours I will go on to a maintenance program three weeks every three months.

If it is not successful, there are a whole range of treatments that I have to move on to. Equally the cancer can move to other parts of the body. But that’s for the future and I am very positive about my journey and my future.

Co-morbid stuff – Along the way I have had some PSA blood tests for prostate. My first gave a reading of 12!! Sky high, my second was 6 halved but still sky high for a 57-year-old guy. I’ve another planned four weeks after my final treatment.

The mental health stuff – I’m pretty grounded and level headed, but it (having a cancer) does screw with your head a bit, Dr Google is a fuckwit in the middle of the night and there are times when I don’t want to be around people. I loved the family friend who in between fags passed on his pearls of wisdom “oh I’m sorry to hear about the cancer Chris” and proceeded to tell me of half a dozen friends and work colleagues who had died of “just what you’ve got” or made a point to telling them they needed to go to their doctor to get themselves checked as they had blood in their pooh, they’re dead now. I wish I had recorded it because it was a very comical. I do keep dipping into my ‘therapy training’ and that is a great source of reassurance and comfort at times. As many of you know I don’t own a TV but I do have a TV licence and watch quite a bit of crap on my iPad and oh thank goodness for the World Service and Radio 4, I’m totally up to date with the Archers!

Thank you’s… So many many beautiful people around me, with gifts, cards, treasured words and well wishes. I am truly humbled, grateful and privileged to have such a wonderful group of people around me. Knowing how to reach out to people is hard for anyone but it’s an important thing to do and some people do feel awkward talking about it and it’s good to be aware of that.

I hope this has been helpful, please do not hesitate to contact me if you have any questions.

1Bacillus Calmette-Guerin therapy: Bacillus Calmette-Guerin (BCG) is the main intravesical immunotherapy for treating early-stage bladder cancer. BCG is a germ that is related to the one that causes tuberculosis (TB), but it doesn’t usually cause serious disease. BCG is put directly into the bladder through a catheter.
2 Understanding Non-Invasive Bladder Cancer, Macmillan Cancer Support 2016 5th edition.
3 VESIcare – Solifenacin succinate, a muscarinic receptor antagonist that reduces muscle spasms of the bladder muscles and is used to treat the symptoms of overactive bladder such as incontinence, urinary frequency, and urgency. A medication for Overactive Bladder (OAB) with symptoms of urgency, frequency, and leakage

 

Some thoughts on Study…

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Here’s a funny thing… with that study malarkey… I didn’t fare too well in school, dealing my own early developmental trauma (more on that in the book) and actually wanting to stay on at school to study the arts. With a pianist father, an actress mother and the wonderful support and encouragement from my music, art & drama teachers thought I was in with a good shout. But no… the ‘rents’ had other ideas, the seventies, three day week, winter of discontent and the fact that they were prize assholes prevented me from staying on at school. A little bewildered and somewhat arrogant I thought I’d do something that would piss my parents off! Be a chef, that was airy-fairy and art-farty just like my beloved arts! I had been the only boy in the cookery class at school and could rustle a mean shortbread and beef casserole with dumplings. But no they loved it, my plan backfired. A couple of months into my job at the Tudor House (now the Tudor Park in Bearsted) the lad I shared a caravan with in hotel grounds died in my arms. A bit fucked up, but seems he was terminally ill, had discharged himself from hospital in Yorkshire travelled to Kentstable to die so as not upset his sister. I met his sister a few weeks later, she came and thanked me for being with her brother and said how his corneas had been donated to a young girl to save her eyesight. Maybe the late Joe was also looking out for me as one afternoon, not long after his passing I was speeding up Hollingbourne Hill on my way to my fathers house in Bredgar, At the top of the hill it was completely foggy and I got stuck behind a bus. I thought I knew the roads well and on a motorbike I’m a lunatic, boring fart in a car lunatic on a bike. I opened up the throttle and began to speed past the bus… ahead of me two lights and the sound of a horn emerged from the fog. Next thing I know I’m in a field with the motorbike, no bus, no lorry, an eerie silence and stillness, broken by the sound of crows squawking. Maybe Joe was there, looking out for me, if you believe in that baloney!

I guess my study journey never really ended… I qualified as a Chef with those spectacular City and Guilds qualifications. Although the late great Jean Claude will forever be my one and only teacher… Stookes you little fucker!

From here I went on to train as a tutor in adult education, teaching cookery. I then trained as a Youth Worker, I somehow bumbled through two degrees one with theology for some bizarre reason. I got diploma’s in NLP, Solution Focused Therapy, Group work and Mediation which are pretty cool. I’ve counted up some 100 shitty work related courses that in the main are complete crap especially the likes of online Information Governance, GDPR, Lifting and manual handling!

Then yoga teacher training, Essex which I hated, Trauma Sensitive which was a joy. Yoga for Autism, Restorative, Yin and Meditation. India which was just pure immersion. Then the incredible Yoga Therapy.

So what next?

I do like the idea of that PhD!

 

 

Six weeks of BCG Immunotherapy done – My Journey through Bladder Cancer

Well six BCG sessions done, each one a joy! Thank you, Emillie, Alison and Jeanette, I’m sure it wasn’t the most joyous experience for these wonderful professionals. Jeanette, my MaIMG_5351cmillan nurse administered my last treatment and we chatted for a while, she eventually realised that we had met when I was first told I had cancer and proclaimed that I was hers! Jeanette joked about her being a scouse and spoke of going to yoga. Of course, Jeanette and her daughter went to the yoga teacher Kayleigh, who I had berated for writing about wanting to experience yoga using cannabis!   Back to the BCG… The administration was different with each nurse, the chemical cystitis  continued for the remainder of the sessions and my prostate seems to have gotten in the way for the last two, with the final dose causing me to have blood in my pee for several hours after.

To celebrate not having any treatment I attended the urological cancer support group which was a somewhat humbling experience coupled with my head dipping into the process of how a group works and functions… There was the usual awkwardness as a group of people gather, some know each other, others painfully shy, those with an enforced jollity about them. The team of Macmillan nurses doing their best to welcome and recognise everyone. It was odd, the sense that all of us (well the men – wives/partners are welcome) had, or were recovering from cancer. I mused as the Chair (I forget his name), a little bespectacled man with an air of self importance, his checked hillbilly shirt tightly tucked into neatly ironed jeans and clearly suffered from ‘little man syndrome’ all his life, kicked off proceedings. A welcome, an invitation to buy a raffle ticket, bloody raffle tickets, always catch you unawares! There was a little joke about the last meetings raffle, but you had to be there. I rustled together a couple of quid. The opening announcements were a bit freaky, but given the nature of the group I’m guessing it’s not that odd, deaths and health deterioration of members. The chair spoke of how Charlie had passed but remained a character till the very end, having his ashes sent up attached to five rockets on fireworks night. We were also invited to take a look at Keith’s funeral order of service and how there were some “fantastic pictures of Keith in his younger years”. The thought popped into my head how I need to be sorting out my funeral arrangements, which are there will be no funeral, a David Bowie-esq cremation, I don’t want a funeral or anyone mourning me. The chair managed to drop in his “church” and how he and Carole (his wife) wouldn’t be at the next meeting as they would be at a wedding in Scotland… y’know what fella, I don’t give a fuck, but I do like the way you love the sound of your own voice and you’ve clearly had this type of role many times over the years and groups need guys like you!

Dr Taylor duly arrived, introduced to his embarrassment by our chair. Dr Taylor gave an informative, yet informal overview of latest developments in diagnosis and treatments. Of course there were gripes from the ‘naysayers’ and ‘oh woe is me’ but then of course… we’ve all got cancer and we’re gonna die! The take home message, which thrilled me was ‘exercise and sugar’ cancer hates exercise but loves sugar, which fits nicely with my latest health kick and Keto diet. I was also intrigued by the developments in artificial intelligence, robot assisted prostatectomy and a cancer treatment that shakes the cancer cell to death, a kinda fracking for cancer cells. Dr Taylor articulated beautifully the concept of “patient preferences”, would you prefer to be continent and have sexual functionality but a potentially shortened life expectancy or do not have that quality of life, no sex, pissing in a bag but the possibility of living longer. I guess it’s personal choice, I know mine. I noted how there is a lot of “surveillance” in relation to prostate cancer. Dr Taylor ended his talk with a Q & A, he did well to bat away some of the more contentious questions. I did feel for the guy who has currently been discharged yet wants to have a regular check ups and blood tests because he is anxious, scared and lonely. I guess this group is good for him, I did think… ah! yoga and mindfulness will help you to down regulate some of that stuff. The meeting finished up with some social chats a cup of tea, biscuits and details of the next meeting, a Christmas social with fish and chips! Here I met Roy, a seventy-eight year old survivor of both bladder and prostate cancer. Roy delighted in telling me how the BCG treatment didn’t work for him and how he had his bladder removed. Roy is a clear exponent of living longer. Despite being full of old chat he graciously offered me the “if you ever want to talk” line and “I’ll show you my bag if any time” er thanks, maybe some other time fella! There were a few exchanges in the loo, three of us were first timers!

Little stories… Having had time, I’ve been reflecting and recalling some of the more humorous events that occurred during my time working with young people and the incredible colleagues I met along the way. There were of course a vast amount of idiotic morons too, not least the many individuals embroiled within the statutory structure that eventually led me to whistle blow, but more of that in the book. As I trundle to my friendly little GP surgery for a repeat prescription, I recalled doing some work in the Sunlight Centre, where my doctors’ surgery is currently situated. We ran a project with Kent Circus Skills, back in the days when the Intensive Supervision and Surveillance Program was given millions of pounds by the then labour government, the idea being it was an alternative to custody. The ‘G’s in a chaotic and belligerent state participate in a range of circus skills activities as a way of developing self-esteem, confidence and learning new skills. Although these activities were positive and constructive for a group of young who had become embroiled in, or only knew a life of offending. The counter argument is that the majority of young people don’t get in trouble yet are not given these wonderful opportunities, again I argue the pyric defeat theory in the book. Anyway, back to the story… opposite the Sunlight Centre is a small independent grocery store, a treasure trove of all sorts of wonderful items, a myriad of products that create a festival for the senses. There only ever seemed to be one or two people in the store at any one time. The smell of spices begin to consume you as the prices slightly alarm and the ‘nisa-londis’ quality is somewhat questionable. But oh how delightful to be able to buy one single cigarette, duty free Chinese cigarettes – the ones reportedly with glass in! You can run a tab on the never never and so on. At some point during one afternoon, a very angry, somewhat pissed and smelly man came into the Sunlight Centre shouting and yelling, brandishing a claw hammer and wanting to kill the “fucking little cunt” that had upset his daughter in the corner shop. Apparently our lad had made some sexual advances to the guys daughter, which she thankfully declined, but the idiot child then attempted to take the girls money and was verbally abusive. I managed to de-escalate hammer man and suggested that although yes I’d be very upset if this had happened to my daughter, bashing his brains out with a hammer was probably not the best idea and I’d have to fill out a lot of paperwork! A few more slurred words and hammer man was off on his way, good times!

The day after the support group Jeanette emailed me to say thanks for coming along. I replied with a rambling email about how humbling I found the meeting, that Dr Taylor was very informative and how the group must mean a lot to many people. I didn’t win any of the raffle prizes of biscuits, chocolate and wine, which made me smile given the health kick focus.

Mr Chair closed by reiterating how the first meeting in 2019 would be about “intimacy” he seemed to be a little too excited about this to my thinking! I happily made my way out into the drizzling November night, thinking time for pumpkin Thai green curry and gym tomorrow. I’ve become a bit of a gym junkie!

I’m doing okay, my immune system has been super boosted, better than it has been from years even! It is so good to be catching up with people, the continued love and support from so many is phenomenal, I enjoying getting back into some yoga, although free yoga is a thing…  Don’t worry I won’t name and shame those who wanna come along and then blow me out, shit happens! I’m quite liking the Universal Credit and Medical Health Assessment journey, I ended up counselling my work coach on the phone coz his father-in-law has bladder cancer and he is worried about his son and knife crime? Actually the very mention of “I’ve got cancer” brings out everyone’s story, just like Mick I mentioned in my first post. I do find it very amusing.

Anyway that’s my update for now… I know I’ve got a big mouth and muck about, don’t take yoga too seriously because it’s only ever a practice, but I really am quite a shy guy! Yes, I’m scared about having cancer and the inevitable outcome 6 months, a year, five or twenty years from now, who wouldn’t be. Unfortunately, the Stookes mindset is that I now have a licence to muck about a whole lot more and live every breath.

Om Shanti Namaste