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…

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…