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