Bumped

 You wouldn’t believe the effort that’s gone into the logistical arrangements to get me into hospital, out of hospital and provide support at home for a couple of weeks post-surgery based on an operation happening on 5 July…and all at breakneck speed as we had less than a fortnight’s notice of surgery and the date clashed with both kids’ travel plans…

Now what I feared might happen, has happened.  Just had a phone call from the consultant’s secretary to say that my operation has been pushed back to 19 July to accommodate a more urgent case. Obviously, that must be so if someone is in more urgent need than me.  

However, there’s been so much time and effort getting ready for 5 July, and now its all wasted.  Daughter Katie had fit in taking me to hospital around work, holiday and maternity-related appointments.  Son Jack had to cancel his trip to Geneva so he could be here to support me on my return from hospital, while Katie is having a last pre-baby holiday break. Friends have been put on standby to do shopping, empty bins, cook meals, do the heavy lifting…Now, we’ll have to start all over again.  

In the UK, junior doctors finish their strike on 18 July and consultants are due to go on strike on 20 July, so my new surgery date slots in between the two.  Phew!  But the delay brings the operation closer to my birthday at the end of July. I don’t think I’ll be dancing in the street this year…

On the bright side, at least I hadn’t started the bowel preparation; no purging or fasting next week.  

Reality check and pre-op assessment

As he was leaving last week after coming with me to the meeting with the consultant, I said to son Jack "take a look at me now because the next time you see me, there won't be quite as much!"  It was meant as a joke, but just saying it brought home to me the reality that surgery to remove part of my colon was going to happen in the not too distant future...

Reality came a bit closer yesterday, with my pre-op assessment: height, weight, blood pressure, blood oxygen levels, echo cardiogram (repeated several times, I think because the machine was playing up rather than my heart) followed by a whole lot of questions about my medical history. 

I've been given leaflets "Preparation for your operation and theatre direct admission" and "Enhanced Recovery After Surgery (ERAS)".  I'll have to do the dreaded bowel purge again the day before and on the morning of the operation (and shower/wash/dry my hair that same morning...not sure how that will be achieved in between frequent trips to the loo!).  I didn't have to see the stoma nurse or anaesthetist, so I assume that's a good sign that the former won't be needed and the latter will be straightforward.  I do hope so!

The last solid food I can eat will be a light breakfast on the day before surgery.  I been provided with six high carb drinks called Nutricia PreOp which I can have later that day and the following morning to give me some energy.  

I also have a list of things to take in with me (not a lot, so at least it will be an easy pack).  I'll find out the time of the operation and when to arrive at hospital at some point during the preceding afternoon.  On the day, I go straight to theatre admissions and it all kicks off from there...

I won't pretend that I'm not nervous about the prospect of being cut open, having a length of bowel removed and the cut ends being stapled together again.  Who wouldn't be?  But I think the time has come to take action, as I'm very conscious of changes in my digestion since March, which I assume are associated with the cancer, stricture or both.  

Up until February, I was eating and drinking normally without any problems.  The episode of abdominal pain and blood loss, followed by Covid in March meant that I didn't eat much that month.  During April, May and June, I was on and off the merry-go-round of low residue diet, purging and fasting associated with colonoscopies and a CT scan no less than four times over a 9 week period.  My poor gut didn't know whether it was coming or going - often going!! - at that time.  

Now I find I can eat breakfast and lunch, but then it gets difficult.  It's not that I don't have an appetite - I do.  But if I eat a normal size meal after 6pm, I'm still digesting it when I go to bed around 11pm; it feels uncomfortable and I often experience heartburn i.e. acid reflux.  The digestive process seems to have slowed down significantly recently, whether due to the suspected cancer mass or stricture further along the gut or both (or neither), I have no idea.  However, to help the food go down, I have to prop myself up in bed rather than being flat, and sitting up isn't good for my back which needs to de-compress.  I'm finding it easier just to snack lightly in the evening, rather than have a main meal (which sadly limits some socialising...)

I know there will be changes to bowel habits following surgery - that seems to be inevitable when the colon is shorter and therefore food is in it for less time.  But I'm hoping that with a clear run once things settle down, I'll be able to enjoy and evening meal without having to deal with discomfort at bed time.  

Whatever happens, I might as well make the most of this short period before the operation to enjoy some good food before purging, feasting and surgery.  Who knows when I'll be able to do that again??  

Here we go, here we go, here we go…

After one set of blood tests, two incomplete colonoscopies, a CT scan and what felt like an agonising wait of almost three months since the GP put me on a 2 week wait urgent referral for cancer screening, at last things are moving forward.  

We met the consultant surgeon yesterday morning, talked through what had happened (or not happened, as the case may be) and looked at the CT scan in detail.  Although not confirmed by biopsy, the expert radiologists and surgery team are as sure as they can be that the thickening of my bowel wall is cancer.  This can only be confirmed 100% by examining tissue samples, but having tried and failed twice to take biopsies due to a stricture which prevented camera access during two colonoscopies, and there being no other guaranteed way to confirm cancer, they think that its now time for action.  

I’m pencilled in for surgery on 5 July, less than a fortnight away.  The operation is called a “high anterior resection”.  It will remove the area of the bowel on the left descending colon where it’s thickened, a safety margin of 5cm above, the blood supply to that part of the bowel and the associated lymph nodes.   It will also remove the stricture lower down in the sigmoid colon, and the bit of bowel in between the stricture and suspected cancer.  The way blood supplies run to this part of the bowel will dictate the extract location of the lower cut; there’s a limit to how far the alternative supply from below can travel upwards, against gravity.  There should be enough colon remaining after the resection to allow the two cut ends of bowel to be joined up without the need for a stoma/colostomy bag.  

The surgery will be done laparoscopically i.e. keyhole, and may be assisted by robots depending on which operating theatre they are allocated for my case.   As it hasn’t spread, cutting out this length of bowel should remove any cancer completely, so no need for chemotherapy or radiotherapy after.  It should be a complete cure.  

I won’t elaborate on the risks of surgery which are many and varied, right up to the very worst case scenario of dying on the operating table.  But I’m fit for my age, with no comorbidities of significance in relation to this surgery, and the team are very experienced.  They perform this operation frequently.  I will be in good hands.  

Of course, they may find on examining the removed bowel that there’s no cancer there at all and this drastic surgery was unnecessary.  But I’m prepared to take that risk as the alternative - cancer growing and spreading/metastasising, the associated treatment with chemo and poor prognosis  - is too horrible to contemplate.  

Keyhole surgery has faster recovery times than open surgery. I should only be in hospital 3-5 days and will be encouraged to get up and start moving as soon as possible.  The first couple of weeks back at home will be the most difficult with pain and tiredness, and I will need support.  I’m lucky to have family and friends ready to rally round!  No heavy lifting for six weeks, during which time I should start feeling better and stronger.  All being well, I’ll be back to normal in a couple of months.  I hope so anyway, as I’m already thinking about what I’d like to do then.  But if all goes to plan, the biggest delight will be the safe arrival of my first grandchild in mid-September.  That will be a huge incentive to get well quickly!

 

My pre-op assessment is next week.  I’m busy sorting out post-op support arrangements in the meantime, cancelling some appointments that are currently booked in on 5 July and beyond, and making tentative arrangements to meet up with some UK friends from mid August onwards.  It could all go belly up if the operation is bumped to a later date, but I’m trying to stay positive.  

One step forward and two steps back…

Meeting with GP

The week started well, with a useful meeting withy my GP on Wednesday, 14 June.  Although she was the person who initially referred me for fast track cancer screening on 30 March, once in the system it seems like she only hears about what’s happened relatively late in the day, eventually getting copies of reports by other agencies.  So it was good to be able to bring her right up to date with news of the second colonoscopy due to happen the following day, and the first meeting with a consultant booked in for next week, on 22 June.  

She also said she would formally follow up with InHealth (who did my first colonoscopy) what had happened to my fast track cancer pathway.  This did not appear to have been passed on to the hospital with the request to follow up the subsequent CT scan which showed a mass which looks like cancer. 

She is happy for me to contact her by email with updates or queries, taking into account that she only works at the surgery on Wednesdays, so better to contact the practice generally rather than her directly with anything urgent.   

I can request copies of any reports/notes etc, but the CT scan report and images are still at the hospital so would need to arrange access via the hospital rather than the surgery.  I should get advice from the consultant next week when/whether to restart iron tablets (paused in the run up to the CT scan and second colonoscopy).  Up to me whether to take probiotics: no real downside; little difference between branded and unbranded products, just see how I feel.   

Colonoscopy No 2

After meeting with the doctor in the morning, I started taking the bowel prep ready for my second colonoscopy the following day.  This was requested by the multidisciplinary team (MDT) who want images and tissue samples from the mass which showed up on a CT scan, which the original colonoscopy had been unable to reach due to a constriction (narrowing) of the colon which prevented camera access.  

Even if the biopsies had not been examined by the time I meet the consultant next week, it should be possible to establish from the images whether the mass is cancer or something else, and this would inform my treatment plan. Until then, the MDT err on the side of caution and assume its cancer (the most likely outcome).  However, only a biopsy and images will confirm this for sure. 

If you have ever had a colonoscopy, you will know it’s not a pleasant procedure.  It starts with a “low residue diet” for 2-3 days before - food with fibre like fruit, vegetables, anything made of wholemeal flour or containing seeds is forbidden.  In short, really boring and uninspiring meals.  Then starts the purging and fasting.  Meds are designed to clear out the bowel so the camera can see what’s going on inside.  No solid food intake for 24 hours before the procedure, and what’s already in there comes out, usually very rapidly and without much warning.  You really can’t go very far from a toilet while this is going on!  Then nil by mouth for a couple of hours before the procedure itself.  Difficult on a very hot day, like last Thursday when you dehydrate quickly and are gasping for water by the time it starts…

I have now been through this process (or something very similar) four times in the last 9 weeks.  No wonder my guts don’t know what’s hit them!  I really hoped this was the last time I had to do it, at least for quite some time.  I also really hoped that this time, the smaller paediatric camera would be able to get through the narrow gap where the colon is constricted, and be able to take images and biopsies of the mass.  

Sadly, my hope was in vain.  Once again the camera could not progress beyond the constriction about 60cm along the colon, so no images of the mass and no tissue samples.  This was what I feared…Quite where this leaves me in terms of a treatment plan and start date, I guess I’ll have to wait and see until next week when I see the consultant.  What will Plan B be?  

Breaching the cancer pathway 

In the UK, there are time targets for dealing with patients who have suspected cancer.  You are supposed to have a diagnosis within 31 days for a fast track referral from your GP, and start treatment within 62 days of the referral if cancer is diagnosed.  This is so that patients don’t have the shadow of cancer hanging over them for a long time (and believe me, it’s stressful waiting for confirmation one way or the other) and so that detection is early and treatment starts quickly so as to give the best outcome.  

Technically, I don’t have a firm diagnosis yet -just a “mass” which looks like cancer on a CT scan, but has not been tested and confirmed via a biopsy.  And that took 50 days, rather than the 31 day target…Even if I am given a treatment plan on 22 June and surgery happens some time in July, that will be significantly longer than the 62 day target to start treatment in the cancer pathway.  Even that timetable appears to be in jeopardy now, with the failure of the second colonoscopy to access the “mass” in order to take pictures and collect tissue samples.  

What now, I ask myself?  Deep breath and try not to panic…

Some questions answered and more raised…

 Rather than sit around waiting for things to happen, I took the initiative and contacted three cancer charities hoping to get answers to questions which are still nagging me.  Bowel Cancer UK was the first to reply… so now I’m not only a bit older but a bit wiser too!  I also talked to my cancer care nurse on 13 June and she filled in some more blanks.  We can bring the GP up to date when we meet her the following day. 

Cancer Pathway waiting times

My first query was the date on which waiting times for diagnosis and first treatment are based, using the UK Cancer Pathway waiting times.   

In theory, its the date on which the GP refers a patient to hospital under the faster diagnosis 2 week wait (2WW) referral.  However, my GP didn’t refer me to hospital straight away, but to a community endoscopy clinic for a colonoscopy to check for cancer, after becoming concerned about my blood test results (low haemoglobin and high platelets).  That happened on 30 March 2023.  

I was eventually referred to hospital not by my GP, but by the endoscopy doctor when she received the results of a subsequent CT scan which showed a “mass” which the colonoscopy camera had been unable to reach due to a narrowing of the colon (a “benign constriction” according to the report).  That referral didn’t happen until 19 May 2023.  

The cancer pathway is 31 days (approximately one month) from first referral to diagnosis, and 62 days (about 2 months) from first referral to start of treatment.  The 7 week/50 day difference between the two referral dates is therefore significant in the context of the cancer pathway. 

Bowel Cancer UK confirmed the start date for calculating diagnosis and treatment waiting times should be 30 March. Based on that date, I’m already way behind the Cancer Pathway diagnosis and treatment waiting times.  This has fuelled my anxiety, not surprisingly.   

It seems that my cancer pathway from 30 March went missing somewhere between the InHealth Endoscopy Clinic and the hospital.  The GP might like to follow this up.

Delays carrying out the colonoscopy

My second query related to the delay in carrying out the colonoscopy first requested in early March.  The service provider InHealth said they couldn’t do the procedure because NICE (National Institute of Clinical Excellence) guidelines advised waiting until 6 weeks after a course of antibiotics had finished.  As a result my first appointment was pout back from 3rd to 26th April, and the subsequent fast track appointment on 13 April put back to 2 May. 

Bowel Cancer UK was unaware of any NICE guidelines but confirmed it was good practice not to carry out a colonoscopy until 6 weeks after an acute bout of diverticulitis to enable the bowel to recover and reduce the risk of damage and pain. So…the right decision for the wrong reason.  At least I know now…

Chemo before and/or after surgery?

I know that surgery will be the key to dealing with my cancer, but wasn’t sure whether chemo would be required before or after.  Bowel Cancer UK confirmed my understanding that chemo not usually required before surgery for my current staging of cancer.  Whether I need it after will depend on the pathology of the removed cancer and lymph nodes, and other factors that can only be determined once removed, such as biological and genetic make up of the tumour.  That makes sense to me. 

Is the delay to treatment significant in terms of prognosis?

I have been getting very stressed that the cancer might have grown through the bowel wall and started spreading by the time I have treatment.  That’s always a possibility.  However, Bowel Cancer UK pointed out that bowel cancers are often present 2-3 years before they are discovered, so the waiting time I have experienced may not be significant in this context.

Is a biopsy essential before treatment when you know surgery is necessary? 

Bowel Cancer UK pointed out that bowel surgery is a big operation and the colorectal specialist teams will will require a biopsy to confirm cancer before operating.  

My cancer care nurse explained further…the mass looks like a cancer tumour on the scan, but there is a very, very remote possibility that it might be an inflamed stricture rather than a malignant growth.  Unlikely, but remotely possible.  They can only rule this out if samples are extracted for testing.  While surgery would be necessary in both scenarios, if it’s not cancer, then they would not remove the lymph nodes as well. Now this makes sense of the advice given before that they do not want to “under or over treat”.  

If the colonoscopy camera couldn’t get beyond the stricture last time, what hope now?

This has been worrying me…but my cancer nurse tells me that in hospital they have paediatric colonoscopy cameras used to examine the bowels of children which are much smaller.  If necessary, one of these could be used to get beyond my stricture.  They will stop the procedure if it becomes unsafe to carry on.  If there is a problem caused by pushing through a very small gap, then I’m in hospital where they will be able to deal with it quickly in an emergency, unlike the endoscopy clinic which is attached to a small community hospital where such facilities and expertise may not be readily available. That would explain why the doctor who did my colonoscopy was reluctant to push through the constriction in case of an emergency…

What happens when I see the consultant on 22 June?

Even if the biopsy results are not ready, they can look at any pictures taken at the colonoscopy and tell from those images if they are dealing with cancer or something else.  We will probably discuss surgery; likely to be keyhole (laparoscopic) surgery.  They have an enhanced recovery programme after surgery (ERAS) and aim to get people moving soon after the operation.  My cancer nurse couldn’t say for sure, but it seems likely that treatment i.e. surgery will happen some time in July.  At last, a draft timeline! 

Back to life, back to reality…and it goes on, and on and on…

 No news then a gobbleydegook letter

I arrived back home after my InterRail trip to Scandinavia on Saturday, 27 May, half expecting a letter or message confirming a second scan appointment to check whether any sign of cancer spreading to upper body, as indicated by both the doctor who gave me the bad news and the specialist cancer nurse who contacted me afterwards.  Nothing.  

I waited until after the Bank Holiday on the following Monday, thinking there might be something in the post the next day. There was, but it wasn’t very helpful or user friendly: 

What do you make of that?  Apart from being gobbledegook, the bit that really worried me was the request not to do anything until 14 July if I hadn’t heard from them.  Do they really expect people with a cancer diagnosis to wait 8 weeks before following up an appointment?  

Talking sense with the GP

At that point (and remembering the nonsensical phone call I had in Oslo about where I wanted to be treated) I decided to contact my GP.  We talked things through on the phone the next day, 31 May.  She hadn’t seen the CT scan report (just had a message from InHealth to say the scan had shown a “mass”) so she was none the wiser than me about its size, location etc.  

She thought that the two colonoscopy referrals (one standard, then a fast track one) had confused the system.  The original one had not caught up with the subsequent fast track referral. The letter above was wrong regarding waiting time to follow up; ignore it.  She would follow up with the hospital to check that all the referrals are in the right place.  Although the cancer specialist nurses were best placed to advise if I needed more information, but she’d be happy to talk things through. We arranged an appointment in the surgery for a couple of weeks time. 

Cancer care nurse call back - more information

Later that day, there was a call back from the cancer specialist nurses.  My case was due to be considered by the Multi Disciplinary Team (MDT) on Monday 5 June.  According to the scan report, I have a 3cm mass in the left descending colon which looks like cancer, but there’s no biopsy to confirm.  The MDT may want another colonoscopy to try again to get biopsy (the first colonoscopy camera couldn’t get beyond a benign stricture - narrowing of the colon - to see or take samples of the mass).  No sign on the scan that it’s spread to lymph nodes or other organs.  No need for another scan - the ones I had before show the upper body as well as the abdomen.  All good on that front.

In technical terms, the mass is T (tumour) 3 - out of a possible score of 4 so quite large - M (metastasis) 0 and N (lymph nodes) 0.  In old money, stage 2 i.e. growing but not yet spread.  

The MDT will decide if it’s suitable for surgery; they may go straight to surgery or it may take longer if chemo thought necessary (unlikely).  She will get back to me with news next week. 

The MDT meeting 5 May

I was hoping to hear from the MDT meeting on 5 May that I’d go straight to surgery.  The sooner this tumour is removed the better, as far as I’m concerned.  The longer it’s in there, the larger it gets and the greater the risk that it will grow through the bowel wall and start spreading. That would NOT be good for the NHS or for me.  

My hopes were dashed when the nurse called back.  The MDT has decided that a proper biopsy is needed, and that it’s worth trying again, even though last time the camera and biopsy instrument couldn’t get beyond a benign stricture to reach the mass.  My heart sank…at the thought of another colonoscopy and all that entails (low residue diet, bowel prep, purging and fasting, and the inevitable sore bottom); with fear that trying to push a camera through a space too tight to get though first time round would be painful and risk perforating the bowel, and last but not least, at the additional time this would add to the delays I’d already experienced with diagnosis and treatment since the 14 day fast track referral back on 30 March.  Still no end in sight…

I was told that Endoscopy would call to arrange an appointment, and that I was still on track on the fast track referral pathway. 

Trying to get things back on track

Having taken time to digest all this, it seemed to me that the hospital was not aware that my GP had put me on the fast track 14 day referral back on 30 March, and I was already way off the cancer care pathway timescales for diagnosis and treatment.  This delay would only make matters worse, and with it the increased risk of the cancer growing and spreading.  I emailed the specialist cancer nurses on 6 June to express my concerns and anxiety.  

Appointments for colonoscopy and to see a consultant

Later that same day, radiology called to fix the next colonoscopy appointment.  It will take place on 15 June at a hospital in Banbury rather than my own city of Oxford (where waiting times are longer).

My cancer nurse called back too, to let me know that she’d passed on the information in my email to the MDT and now that the colonoscopy appointment is fixed, she will book me into a clinic to see a consultant on 22 June.  At long last, things seem to be moving in the right direction! 

Actually, I’m not sure what will happen at the meeting with the consultant on 22 June.  I hope by then that results of any biopsies taken at the forthcoming colonoscopy will be available and that my case will have gone through the MDT at the preceding Monday meeting on 19 June (or the overflow meeting they sometimes have on Wednesdays).  We shall see… 

Colonoscopy call back

7 June and a call back from the colonoscopy nurse to let me know that the bowel prep had been posted and to talk me through how to take it.  I discussed my fear of pain and how sedation last time round had not made me feel any different. She checked my notes and found I’d only be given a low dose sedation last time (no wonder the experience was on the painful side of uncomfortable).  She promised to document the sedation issue on my notes but advised me to flag it up again on then day.  You bet I will!  

The consultant appointment letter

I’ve since received a letter dated 7 June confirming the appointment with a consultant on 22 June.  It says “should your surgeon decide you need an operation, you may be offered a pre-operative assessment on the same day -please allow extra time for this”  Yes please, I do hope so…Bring it on!!  

Phone calls in Scandinavia

 In the week after hearing the news that I had bowel cancer while in Copenhagen, and before I was back in the UK, there were phone calls…

Telling the family

The first, and most difficult, was the group Whatsapp call on 20 May when I had to break it to my grown up kids.  I was dreading it.  In the event, there was no way of breaking it gently, so I just told them what had happened.  I think they must both have had some inkling about what was coming. Why else would your mum schedule a WhatsApp group call (something she’d never done before) in the middle of a trip abroad?  They were asking the questions I should have asked but was too knocked back to even think of at the time I took the call…I couldn’t answer them, but promised to let them know as soon as I had any more news.  

Call from the cancer nurse

The next call was from one of the cancer nurses on 23 May, making first contact.  I was asked whether I had taken on board and understood what the colonoscopy doctor had told me.  I more or less repeated the discussion and he seemed satisfied that I’d got hold of the right end of the stick. Although he would be on leave when I returned to the UK, everything would carry on in his absence, as discussed before.  The scan would happen the week following my return and my case would be discussed by the MDT the Monday after that.  He said that would be 12 June (which, when thinking about it afterwards seemed strange as if I had a scan the week of the Bank Holiday, the first Monday after that would be 5 June).  Whatever…one of the cancer nurses would call me to let me know the outcome of the MDT discussion.  If only surgery required, they aimed to do that within 62 days - but it could be longer if chemo needed beforehand. 

The 62 day (and 31 day) time frame for treatment

I’ve since found out that he was wrong on the 62 day thing. It’s 62 days from the urgent referral to start of treatment (in my case, 62 days from 30 March i.e. 31 May - now long since gone) or 31 days from the decision to treat and start of treatment.  If the MDT agree a treatment plan on 12 June, I should start treatment by 13 July.  

It worries me that the cancer specialist nurse does not know the timescales they are supposed to be working to!! 

Where to be treated

A couple of days later (25 May), standing in the middle of a public building in Oslo, camera in one hand and phone in the other, there’s another call which is bizarre to say the least. The chap on the other end tells me my referral has changed from colorectal to gastroenterology and asks where do I want to be treated? 

We have a strange going round and round in circles conversation, with me telling him I’ve been diagnosed with bowel cancer and am already in touch with the team at my local hospital in Oxford, and him asking me again where I want to be treated.  I keep telling him that what he’s saying does not make sense in the context of a cancer referral which is already going through the MDT/treatment process at my local hospital, and him repeatedly asking the same question.  

In the end, to shut him up and move on, I ask him what are my options.  He replies, in theory, I can be treated anywhere, but for all practical purposes, it’s the hospital in Oxford that I’m already involved with or another some distance away in Banbury.  I tell him that as I live in Oxford and don’t have a car, I’ll be treated at my local hospital in Oxford.  Only then does he say there’s a long waiting list and I won’t get an appointment until August.  Next year!  

I repeat that what he’s just told me doesn’t make sense in the context of a cancer diagnosis, but that I’ll take it up with my GP when I’m back home.  

Bemused, frustrated, concerned and puzzled, I try to put it out of my mind and go off to enjoy the afternoon with friends I’m meeting up with for the afternoon.  Much more fun!

Digesting the bad news

If you have read my last blog post, you will know that I was given the bad news that I had bowel cancer while I was away from home, on an InterRail trip in Scandinavia.  I was actually in a hotel room in Copenhagen, at the end of a long day’s sightseeing and photography, having walked over 8 miles around various locations (according to Strava) - the seaside, the University area and Orestad - using public transport to travel between these places.  That day was my last chance to explore Copenhagen as I was moving on to Stockholm the following day.  I was thinking about packing and what I was going to do when I arrived in Sweden, so the phone call took me by surprise.

The doctor introduced herself (it was the same doctor who had carried out the partial colonoscopy, and she said she remembered me).  I joked that it might be an expensive call, as I was abroad.  I remember she asked if I was alone and I replied yes, I was traveling solo as I often do.  She went on to say that the results of the CT scan had come through, and it showed a “mass” the other side of the benign constriction which the colonoscopy camera had not been able to pass. She was sorry.  It was cancer.  

She gave me a phone number for the specialist cancer nurses at my local hospital and advised me to contact them if I had any queries.  She would pass my contact details on to them and they would be in touch.  She also advised me that I’d need another CT scan of the upper body.  When I asked whether this was to see if the cancer had spread, she said it was “just routine”.  I told her the date of my planned return to the UK on Saturday, 27 May and asked whether the scanner worked over weekends and Bank Holidays, which were happening immediately after my return.  The answer was yes.  I supposed I assumed that I’d have an appointment waiting for me when I got home, if not before.

I can remember asking what happens now and being told that the scans, colonoscopy report and blood test results would be considered by a multi disciplinary team (MDT) who would decide the best course of action and let me know.  It would probably be surgery, maybe keyhole surgery, possibly with chemo before or after surgery. I recall saying that I wanted to be involved in the decision making.  When asked whether I had any other questions, I said I couldn’t think of anything - I was still processing the news.  Her last words to me were if I couldn’t eat anything or felt sick, just keep taking little sips of water. And that was it.

In truth, I couldn’t quite believe what I’d been told.  My regular cancer screening poo stick test taken in February had come back negative.  After the initial gut episode early in March and post-Covid recovery, I’d felt fine.  Travelled to Italy, Istanbul and now Scandinavia without any problems. All the medics I’d talked to indicated that my symptoms were consistent with diverticulitis.  A cancer diagnosis was the last thing I’d expected.  Oh, shit.

The practical part of my mind swung into action, prompted by the doctors remarks about taking sips of water if I couldn’t eat anything (which sounded serious and more than a remote possibility, otherwise why mention it?).  I phoned my travel insurance provider to tell them what I’d been told, to make sure I was covered in case of a medical emergency (I am, but must tell them the treatment plan when known so they can adjust my cover - and the cost, no doubt - accordingly).  

Then I had to think about how to break it to the (grown up) kids.  Wanting to tell them both at the same time, and feeling unable to wait until I was back in the UK, I set up a WhatsApp group phone call for the following evening, after I’d arrived and settled in at the Stockholm hotel.  They probably guessed that something was up, but I needed to bit more time to digest the news before I talked to them.  

I think I must have finished a bit more packing, double checked train times from Copenhagen to Stockholm, and got ready for bed.  Life would never be quite the same again…

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…