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.  

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…