And so it begins again…

To celebrate its 50th birthday, InterRail offered all its rail passes for sale at 50% reduction in the spring of 2022.  The passes could be used at any time up to 11 months from the date of purchase.  The opportunity was too good to pass up, which is why I found myself at the start of 2023, the proud possessor of a “global” i.e. Europe-wide, senior Interrail pass, planning to travel around Europe by rail in the spring, make the most of photo opportunities and reduce my carbon footprint in the process.  

Rather than go away for a whole three months, I organised my travels by groups of countries.  Embracing my inner teenager, I set off on my first trip on a route around Spain in February, finishing in France in early March.  Why am I telling you this?  Well, it’s where and when my other journey started…

Feeling unwell

All went well until our last full day in France.  We arrived in Bordeaux, checked into our hotel and set off to visit the Cite du Vin, looking forward to a glass of wine in the Belvedere and enjoying views over the city.  I began to get abdominal cramps on the way there, and ended up spending most of the time in les toilettes (fashionably painted a dark colour with low level lighting) thinking I had diarrhoea.  It wasn’t until we returned to the hotel and a well lit en suite bathroom that I realised I’d been losing blood rather than poo.  

Looking back, I’m not sure how I managed the journey back to the UK the next day but, somehow, I made home and took myself straight to bed where I stayed for most of the next day.  Feeling no better, the following morning (8 March 2023), I phoned the GP and described my symptoms to the receptionist.  The GP returned my call and after a brief discussion, I was asked to attend the surgery that afternoon.

Suspected diverticulitis 

The doctor listened carefully, examined me, and said my symptoms were consistent with diverticulitis.  I was advised to stop taking a non-steroid anti inflammatory drug (NSAID) which I’d been prescribed to help with chronic back pain caused by damaged lumbar discs, and was put on a 5 day course of antibiotics to clear up any infection.  She also said, she’d refer me for a colonoscopy to confirm the diverticulitis diagnosis and check there was no other reason for the pain/blood loss episode, just in case…

Back at home I collected the prescription, put the NSAID away, and took it easy as I had zero energy.  The diverticulitis diagnosis seemed very plausible.  Indeed, a friend we had met up with for a meal in Montpellier a few days earlier had described his own experience of diverticulitis which sounded similar, so I thought it was a sad but almost inevitable consequence of getting old, exacerbated by long term use of a NSAID known to cause internal bleeding.  

Colonoscopy appointment(s) 

By the end of the week the pain had stopped, likewise the bleeding, but I still felt absolutely wiped out in terms of energy.  However, the surgery had sent me a link to arrange a colonoscopy appointment online, and one of the few things I did manage to do was fix that appointment for the first available slot on 3 April. Plans for my second InterRail trip were shelved then quickly abandoned as I realised I couldn’t make it work around the appointment date, but I hoped to get back on track when it was over...

Then a few days later, just as I was beginning to feel better and having dodged the Covid bullet for nearly 3 years, I tested positive for the first time since the start of the pandemic. Covid wiped me out again for another 10 days or so, but the last test was negative just in time for an appointment on 24 March for the surgery to take bloods for testing.  Then I sat back and waited for the colonoscopy appointment, little realising that it would be the first of a number of such appointments before the procedure would actually take place…

As it happened, the bowel meds for the colonoscopy did not arrive when they were supposed to, so I contacted the service provider InHealth to follow up and was told later that day that the appointment booked for 3 April would have to be cancelled/rearranged for later in the month as NICE (National Institute for Clinical Excellence) guidelines said not to carry out a colonoscopy until 6 weeks after the end of a course of antibiotics.  The new (2nd) appointment date was 26 April.  

It came as a bit of a surprise therefore when the GP phoned me on 29 March to say she was concerned about my blood test results - low haemoglobin, which explained the fatigue and high platelets, a sign of infection.  The blood loss earlier in the month could account for the former and Covid the latter, but she would fast track me (14 day referral) to bring the colonoscopy appointment forward to screen for cancer, just to be on the safe side.  The referral came through on 30 March 2023. According to the Faster Diagnosis Cancer Pathway, I should find out whether or not I had cancer within 28 days i.e. 27 April.  

InHealth contacted me shortly after the referral; my second colonoscopy appointment on 26 April was cancelled and a new 3rd appointment made for 11 April. I assumed that a suspected cancer diagnosis trumped NICE Guidelines regarding delaying the procedure until 6 weeks post-antibiotics. As they already knew about the course of antibiotics and dates, I assumed that InHealth would have said something if that was not the case.  I also assumed the GP knew about this guideline.  I was wrong on all counts.  

However, I didn’t find out until I arrived at the clinic, having gone through 3 days of low residue diet, 2 litres of vile tasting bowel medication which clears out the system, associated diarrhoea, fasting, then nil by mouth for the last couple of hours, only to be told they wouldn’t do the procedure as it was not six weeks since I’d finished the course of antibiotics. I was devastated given the fast track referral.  The endoscopy doctor said in so many words, not to worry; all my symptoms were consistent with diverticulitis, it was unlikely to be cancer especially as I felt well and my poo stick test under the national bowel cancer screening programme in February had come back negative.  The appointment was rearranged for the next available slot which was on 2 May - ironically, a week later than the date of the 2nd appointment which had been cancelled following the fast track referral. 

As I was feeling much better by then, I arranged my second InterRail trip - a week in Italy in early May visiting the Cinque Terre, five small towns strung out along the coast of the Bay of Poets, between Naples and Genoa, only accessible by train and boat. I was due to travel out the two days after the colonoscopy. As any biopsy results from the procedure wouldn’t be available for a week or so, and I was feeling tired but otherwise OK, this was too good an opportunity to miss.

In the run up to the 4th appointment on 2 May, I went through it all again - low residue diet, purging, fasting, nil by mouth - and finally had the colonoscopy, only to be told that there was a benign constriction (narrowing of the colon) which stopped the camera getting any further.  I’d have to have a CT scan to look at the rest of the large bowel.  Another delay, but it had to be done.  I was also told that they couldn’t remove any polyps found (standard practice in colonoscopies) as I was flying to Pisa two days later and the pressure in the plane cabin might cause bleeding.  Why don’t they tell people that beforehand, when fixing an appointment?

CT Scan 

The CT scan was arranged quickly for 15 May.  I booked my third InterRail trip to Scandinavia starting on 16 May, and then headed off to Italy to enjoy the distractions of the Cinque Terre, Italian food and wine, gelato, sunshine, photography, train rides and boat trips, and tried to put it out of my mind for a bit.

The CT scan on 15 May appeared to go off without a hitch.  I double checked that I could fly the next day (not a problem) and was told to contact the In Health doctor if I hadn’t heard anything in 7-10 days.  Then I left and headed off to Denmark to start my third and final InterRail trip and make the most of my rail pass before it expired on 23 May.

The bad news

I was in Copenhagen when the bad news came on Friday 19 May.  I had ignored several calls during the day from a unknown caller (having had a recent flurry of scam calls) but answered the final call as the code came up as Witney, where the colonoscopy had taken place.  It was the InHealth doctor who, after a few enquiries as to where I was and whether anyone was with me, advised that CT scan showed a “mass” in part of the colon the colonoscopy camera could not reach due to the stricture.  I had bowel cancer.

It took me back immediately to Steve’s diagnosis of mesothelioma, shortly after we had started our grown up’s gap year traveling.  How ironic that my diagnosis came as I was embracing my inner teenager and traveling round Europe by train.  To find out what happened next, you’ll have to wait until I’ve written next blog post…