Joel’s bowel cancer story

In 2021, Joel completed his bowel screening test – a test for 50-74 year olds that you do at home.

His bowel screening results showed further investigation was needed and he was booked in for a colonoscopy, followed by a CT scan immediately afterwards. The result was that Stage 2 bowel cancer was diagnosed.

He then had surgery and all his treatment at Homerton Healthcare NHS Foundation Trust. The time between bowel screening test and operation on his cancer was 7 weeks. Five years later, Joel continues to be cancer free.

As well as urging people to complete the bowel screening test Joel also recommends:

• Take notes because they will be almost your only record in plain language.  Medical letters are always in medical language, even though they’re addressed to you, copy for the GP or other professionals.

• Talk about it because cancer is no longer an automatic threat to life.  Talking not only reduces your own fears by sharing the situation but helps others deal with it – “I am a cancer survivor, it can be beaten”.

• Ask questions!  Cancer is still a dark word to many; past images of it may jump back into your mind without warning.  I’ve had a few of those moments, but I’m on the good side of it.  Those moments fade but can be frightening.  What was then is no longer the case now for most of us – 1 in 2 will have it in some form, occasionally more than once.  But never forget this – it can be beaten.

Here is Joe’s story in full.

"There's no easy way to tell you this..."

Those words began an ominous sentence the surgeon said to me on Friday 04 June 2021.  Every two years, everyone in the UK age 50 and over with a National Health number receives (close to their birthday, officially!) a sampling kit to test for bowel cancer.  Mine should have been in January, when that year I turned seventy (or as I prefer to call it, sixty-ten), but was delayed through Covid and staffing issues until early May.  That probably saved my life.

I completed the test as usual, as soon as I received the kit and sent it back in the supplied envelope.  Usually, it’s a negative result which takes several weeks to come back.  The lab reply was back in a week; the test kit had found something suspicious (never definite, just an ‘indication’) and I had been booked for a colonoscopy at my local hospital, a short walk away, a few weeks hence.  Nothing to worry about, I kept self-assuring...

Preparing for the invasive procedure was probably one of my most uncomfortable experiences.  Not only because of Covid was I to self-isolate at home for three full days before the process, but I also had to go on a restricted diet.  I’ll phrase the next bit diplomatically - the afternoon and evening before the test I was not to eat anything and had to take very powerful laxatives twice to ensure my colon was clear the next morning.  My new best friend became the bathroom, giving it many close attentions, and mostly worried about when it would be safe to go to bed.

That last part was solved by applying decades of admin’ experience, first learned in my airline life.  The two laxative doses were to be taken over two sessions, first in the late afternoon then mid-evening.  By noting ‘entry’ and ‘exit’ times, and the lapse between them, I worked out I could safely go to bed around 11pm, confident nothing unfortunate would happen overnight.  Something useful from years in offices, control rooms and pushing paper.

The colonoscopy team was six women; I was semi-sedated and given painkillers.  It is not an everyday experience to bare my behind to half a dozen females but they made me mentally comfortable - the other end was less so.  The Team Head woman led the process - she explained she liked to “keep her hand in...”  Even under mild sedation I asked for an assurance that it would not be her hand going in, which got the laugh and made the rest of the experience a little less daunting.

She also said that when the probe went in, it would compress the air in my bowel, and my body would want to expel it.  Don’t hesitate she said, we’ve heard them all before and smelled them too.  On cue, a ‘window rattler’ emerged, which made two nurses at the far end of the room applaud.

The process began: one nurse sat facing me while the rest were on the other side, or carrying out duties at a bench on the far side of the room - this delightful woman asked me how I was, what I did for a living or had done given I was now severely retired by nine years, and other things to keep my spirits up.  She was also repeating the team leader’s requests in case I hadn't heard, to move this way or that.  I was invited to watch the CCTV of the examination as the probe went inside me - I didn’t take that up...

The process took about half an hour (I lost track of time) and after I had dressed was led gently, still wobbly to the reception room.  Then the real news about half an hour later - they had found and removed ten polyps (growths) inside my colon - seven were “benign” (harmless).  Two merited lab analysis but were probably ok, and one whopper (2cm across) was of concern – I may have cancer, was the slow and careful message.  Only caution here, lab tests would confirm the condition - and it was NOT, NOT, NOT fatal.  But - they knew as I did, that people of my age knew ‘cancer’ had once been a death sentence - no matter what type, if you had it, you were leaving the planet.

Not allowed to walk, I was wheeled across to the CT scan unit and jumped the queue for a whole-body scan - that was when I really began to worry, because queue-jumping was only for urgent matters.  The scan result would be passed to the surgeon along with the lab results from the examined polyps. “Do not be concerned” (what?) and they would be in touch very, very soon.

They called me in a week later for a Multi-Disciplinary Team review, led by my surgeon with others present from the colorectal team and the care nurses.  My surgeon (I didn't yet know this - a friend looked up his track record as I had no idea that could be done) was a world-class bowel cancer specialist, very open and friendly.  As they could see I was taking notes (years of minute-taking at meetings coming in useful - I have almost verbatim notes) they all spoke slower to let me write it all down - the only surprise was that they didn't ask for a copy.

“There’s no easy way to tell you this, Joel - you have cancer...”

As I was writing that down, my reaction was muted.  Then after a short pause of maybe a second or two, during which every worst thought of my life flashed through my mind, he said, allowing me to write this down verbatim too – “It’s operable, it’s curable...”  Then the emotion hit.  From the very worst to the very best in under a minute.

The emotional roller-coaster was unlike anything I had ever been through.  I am of a generation that when we heard the dreaded word ‘cancer’ that was a terminal event.  ‘How long have I got?  What do I have to do now?...’ raced through my mind,  The despair was measurable in tons.  Then the better news, and as a former airline inmate, I was flying higher and faster than Concorde.  Then the less welcome impact of the good news – ‘Will I live that long?’ and that bottomless pit beckoned again…

He consulted his computer while talking to me (the others present were also joining in) about things which out of sheer relief I couldn’t write down – “We can operate on you in three weeks - is that ok?”  I was expecting a wait of possibly a year.

“Yes – I’d prefer right now...”  My surgeon smiled and said he was busy today, so was three weeks ok (again)?

“Yes, because that means I can go to an air-fair...”  The change in him was incredible - he too was an aviation enthusiast and we immediately side-tracked into our favourite planes - his is the Comet, and mine are the VC10 and the Lockheed TriStar.  We both liked planes which never quite made the big time, were of different designs to the norm, but never lived up to their early promise.  He was now more than just another medical professional, and I felt more confident he could cure me.  And I was more than just another patient – he’d look after me even better!

The other staff present talked me through processes, and I was taking notes again.  My lights were back on, not that they were ever going out, but emotions play strange tricks with your mind.  I met the MacMillan Nurse and was given a wad of literature about my operation and the post-operative care plan.

Another hospital visit for a pre-operative check-up – every ailment I’d had and those I still had.  More good news from that – plenty of Covid-related walks for over a year, never smoked, didn’t drink a lot of alcohol, been a vegetarian for over half my life.  The odds on coming through the operation successfully were 98.5%, because of my ‘good health’ - the first time I’d ever been told that... The missing bit was because of my asthma.  I liked those odds a lot.

In those three weeks between diagnosis and operation I took a conscious decision, to tell everyone about my condition.  Not because I sought sympathy (which in all honesty I did) but because I had seen the damage keeping something like this to yourself can do, mentally and physically.  It also brought out the better sides of humanity in many, many people; I felt supported by family, friends, neighbours and union / other colleagues throughout my recovery, which would take to the end of 2021, as the stitches across me were massive and took that long to heal/dissolve.

The operation was the easiest part, I would be out cold for four hours, my hard work began with recovery.  Apart, that was from the preparations, similar to the colonoscopy – those laxatives again, ‘orrible diet and plenty of toilet visits the day before…  Plus Covid-protective isolation.  I walked to the hospital that morning in two different states of mind – ‘it’ had been caught early so I had a great chance of beating it.  But the ordeal – I had never had a major operation before – was a less comforting thought.  I was there at 7.30 in the morning, made welcome – all the nurses understood what I and the others were feeling, very supportive.  I changed into hospital robes and was shown to my bed, which would be home for a few days to come.  The team called to prepare me, all understanding – it was a sort of routine for them but not for me, all of that allowed for, everything explained and I was encouraged to ask questions – but what do you ask?

The anaesthetist called before I was walked to the operating room – he’d do this and that to me.  Did I want an epidural?  “I’m a bloke, I’m not pregnant…”  I suppose that was a standard response – he’d heard that one several times before.  While I resist tick-box medicine, in this case I wanted everything which would make life easier for them.  I’d said to him and the nurses “Your job is to make me better, and my job is to do everything to help you do that.”

I was only in hospital for four days, because of that ‘good health’ – under the knife early on the Thursday morning, came round without needing to go to the High Dependency Unit, walking the next day, successfully using the toilet for sit-down purposes soon after that – everything was working!  My surgeon visited on his Monday ward round, spending a few minutes on my health, that I was good to go home.  No need to stay, as I was already off the painkillers routinely given for post-operative recovery.  Not that they needed the beds, I was over-assured, as two in my ‘cubicle’ of six were empty.  Then fifteen minutes on planes and what I had done in BOAC and British Airways, especially some of the more unusual flights I had taken, being on a brand new Boeing 747 five months before it went into service, going sideways on a Boeing 707 training flight in a thunderstorm – and I hadn’t even started on my true life as ground staff!

Talking aviation did as much good as all the other care the excellent nurses and physiotherapist were offering.  I could see staff were struggling at times -talk was of lots of overtime on offer because of staff shortages.  Their normal nursing shifts are twelve hours, so not everyone took the extra work...  The magic words were as always ‘please’ and ‘thank you’, try to make them laugh and not press the buzzer unless there was no alternative.  One nurse said I’d have to marry her – I did not think she was serious but we shared a lot of jokes…

I had expected to spend a week in hospital before being well enough to go home.  But, they kept saying how good my health was - all my vital signs of pulse, oxygen saturation, blood pressure and heartbeat were “very good”.  Even at 3am when they woke me up for the regular four or six hourly tests.  Covid had made me mask-up and go out for a walk most days, either around the local park which has a three-mile perimeter track, or on foot to the shops, coming home by bus.  Most colorectal patients don't leave their hospital bed for several days, but I was walking (only a few yards at first, carrying around an intravenous drip, still on nil-by-mouth for a while) on the next day without any discomfort at all.

And I was hungry – my first meal (I hadn’t eaten for several days) was three full courses.  The plates went back cleaner than they had ever been.  I was encouraged to eat, not because they knew I was famished, but to know whether my disposal system was working and had successfully entered the sewage system.  That was a moment of triumph twice over – what I achieved (great joy!) and telling the nurses (more joy!) – how something so mundane became magical, and the first clear sign that I was on the way back to independent life.

That same friend who told me about the surgeon’s superb track-record picked me up from the hospital to drive me home and make sure I had everything to hand.  No worries about having restricted mobility – I had home help organised by the hospital and the MacMillan Nurse, and that biggest park in east London was on my doorstep.  Just make for the first park bench, read a book and enjoy the sunshine, once a day.  When you feel stronger, go to the next park bench and gradually build up your strength and confidence.  Summer is best to recover from a major operation, long warm days (even in Britain, sometimes) and people are generally happier, perhaps even more chatty.

Three weeks after the Op’ I was called back to the hospital - good news, it had been successful.  The cancer had been an even younger single cell (stage T2) than they thought, and the part of me removed has no sign of spread through the bowel wall – my ‘lymph nodes’ (I had to ask what they were) were intact.  I had been rejoined-up successfully and everything was now back to normal, or heading that way.  That was one of the most emotional moments of my life - effectively being given my life back, as a part of me didn’t believe the condition was survivable.  They do tell the truth.

My recovery programme is a five year “surveillance” plan, of tests, interviews, more CT scans and (oh yippee - not) more colonoscopies.  I also have a phone number to call for “any reason” at “any time” which in practice is Mon-Fri office hours.  This is normal - I have also been assured that if any recurrence happens, or if I suspect it might be happening, I will be taken into hospital instantly and operated on ditto.

So:

One - do the ‘bum scrape; (some call it ‘Pooh Stick’, others have a more blunt expression) test when it arrives.  I’m proof that it may save your life.  The four-month delay probably saved mine - had it arrived on time in January, the cancer was so young when it was found that it could not have been there in January but was found in May.  Otherwise, unless I realised something was odd or wrong and sought help, nothing would show up until my seventy-second (sorry, sixty-twelvth) birthday ‘Pooh Stick’, which would be well-advanced and complex to cure.

Two - take notes because they will be almost your only record in plain language.  Medical letters are always in medical language, even though they’re addressed to you, copy for the GP or other professionals…

Three –it pays to talk about it because cancer is no longer an automatic threat to life.  Talking not only reduces your own fears by sharing the situation but helps others deal with it - I am a cancer survivor, it can be beaten.  In sharing these events (I have become an evangelist for the ‘Pooh Stick’), what has really surprised me is the number of others who having found someone who ‘understands’ they have told me their cancer tale.  So this helps others too – the mental approach is a critical factor in beating this disease.  Sharing and dispelling those dark moments, even if you’ve been told a hundred times it will not end your life, still needs that reassurance from someone else who’s been through it successfully.

Four - ask questions!  Cancer is still a dark word to many; past images of it may jump back into your mind without warning.  I’ve had a few of those moments, but I’m on the good side of it.  Those moments fade but can be frightening.  What was then is no longer the case now for most of us – 1 in 2 will have it in some form, occasionally more than once.  But never forget this – it can be beaten.

And best of all – it was all on the National Health Service, free at the point of delivery, world class treatment, positive attitudes from everyone, not just me.  Cancer can be beaten - a positive attitude (plus a sense of humour) helps!