Colon Cancer - My Journey - A good outcome
When you first encounter bowel cancer, either because you have some symptoms or you have had that first investigation, you certainly get knocked sideways with a head full of worry and what-ifs. I thought I would write this post detailing my journey. I will say that I have been lucky in several respects, and not everyone’s journey is going to be the same as mine. However, one of the things I discovered early on is that as soon as you reach out to the internet there are an awful lot of stories about people having a tough time. My story is about someone not having a tough time, and I want to post it to add some balance, because it’s all too easy to become depressed and despondent.
I’m 57, a Company Director with a fairly sedentaryjob but otherwise lead an active life (although I’m a little overweight – 5’8”, 15st) – currently my spare time is spent renovating a family house that has been passed down, so lots of manual work. For a while (6 months+) I had been having intermittent crampy pains lower left and to be honest hadn’t really thought too much about it – just thought I’d strained something. After a few months I noticed that crampy pains were associated with rather mucusy movements, and that sounded a bit of an alarm bell – something wasn’t quite right. My wife helped persuade me to see the GP, and she didn’t mess about when I described my (few) symptoms “we’ll arrange to have a look and see”. She immediately put me on the fast-track “possibly cancer” investigation and referred me for a colonoscopy. I can't thank her enough for this - my symptoms were few and subtle - no blood. Many people would have ignored my low level symptoms, I'm sure.
Within a few days, on a Sunday I had a follow-up appointment at the local hospital with one of the colorectal team. He said he thought I was probably not showing symptoms of cancer, took me off the formal 2 week programme but did arrange for an early colonoscopy appointment. It came through for 2 weeks later.
For anyone who hasn’t had a colonoscopy, the day before you have to drink a bowel-clearing prep. I had read bad things about this, but in the event as a bloke used to supping the odd pint or two, I found consuming the necessary 3 litres of fluid over half a day not so bad. I had moviprep orange, and it didn’t even taste so bad. The effect of this is that after the second batch it runs out the bottom just about as quickly as you pour it in the top, and almost as clear. An interesting experience, but no big deal.
The colonoscopy itself I was also a bit concerned about having read various stories about pain, and there seemed to be a choice between either sedation or just a bit of “gas and air”. In the end, I decided to forego the sedation as I really wanted to see for myself what was “in there” – you get to watch it on the monitor. In the event it wasn’t painful for me at all – a bit of a weird sensation having that snake fed up you, and a little uncomfortable at times, but I was glad I made the choice I did. I was able to see THE THING as the endoscopist saw it – a blobby growth about 35mm. It was obvious that it shouldn’t have been there. The rest of my innards looked clean and smooth.
The endoscopist immediately confirmed what I already knew. It had to come out, and there was a good chance it was cancerous. He told me when I asked that the most likely outcome was I would have an operation to remove part of my bowel.
As you can imagine, this was pretty shocking news, which for me prompted the start of a trawl around the internet reading everything and anything about bowel cancer – there is a lot out there. At the end of this I thought I knew a great deal about the subject. One of the interesting aspects is the newer procedures coming out of the far east, and now being practiced by some specialists in the UK called “Endoscopic Mucosal Resection” and “Endoscopic Sub-mucosal Dissection”, which is where the endoscopists, using highly specialised instruments and techniques, can get polyps and early cancers out without the necessity for complete bowel resection. I found out who was doing this in London, and also even looked at a hospital in Singapore offering international patients this specialised treatment. I actually emailed the secretary of the London specialist to enquire about Private access, should the need arise – although I intended to stay in the NHS, I wasn’t going to forego the latest treatment if the only barrier was funds.
After my colonoscopy I was scheduled a CT scan – another new experience. Very straightforward – you get injected with a “contrast enhancer” and then lie in the machine while it scans you – in and out in an hour, which included 20 minutes sitting around just to make sure I didn’t have a reaction to the enhancer drug.
Around 3 weeks after my initial GP appointment, on a Thursday, I met with my surgeon for the first time. he confirmed that the biopsy taken during colonoscopy showed a moderately well differentiated carcinoma. He explained that he intended to carry out a Laparascopic High Anterior Resection (Sigmoid Colectomy). He explained if all went well it was unlikely I would need a stoma, but there was a possibility. He said he had a slot for the following Wednesday for the operation (so soon!). At that point I introduced what I had been reading about ESD and did he consider that my growth was a suitable candidate? He said from the CT scans and appearance they were initially staging me T3N0M0, and he didn’t think I would be suitable, but he would seek a second opinion.
All credit to him and his team – they emailed the London specialist immediately with my photos and results. Simultaneously, I also emailed him so he could connect my earlier enquiry with the info coming through from my NHS hospital. The specialist emailed both my surgeon and me back over the weekend saying that on balance I wasn’t suitable for ESD and only surgical resection was suitable. This because of the risk of lymph node involvement.
Again, the day before the op I had to go through the moviprep experience. This time with the added bonus of some pre-op nutritional supplement which was supposed to just be a tasteless carbohydrate, but to me tasted worse than the moviprep. After the familiar results, I went to bed and was up early for the big day.
My wife drove me in, but soon was asked to leave as I went in to the male changing area to put on my operation gown. I was worried and nervous as hell – never been in hospital before. The nurses in Pre-op were efficient but didn’t really have time for moral support. At this point I also met with the Stoma Nurse. She explained that hopefully I would never see her again, but just in case she had to mark me up with a target for the Stoma in case the surgeon needed to make one. This to ensure that the bag would lie in the most comfortable place on my stomach.
Into theatre. I had an epidural, which I barely felt going in after they had applied the local anaesthetic first. Few breaths from the face mask, and I woke up in recovery. Surgeon said had gone well – he’d had to make one extra small hole for the procedure because apparently I’d had an extra long loop of sigmoid. I was a bit spaced out, and the fingers in my left hand were numb, which worried me.
Up on to the ward, and my wife was there. Apparently I was rambling, particularly about numb fingers, but this soon wore off. Don’t know if it was the after effects of the anaesthetics but I was comfortable, alert and awake. I ended up connecting my little laptop to the hospital WiFi and watching TV all night – I couldn’t sleep.
I was on a drip and catheter, and the next day as the operation drugs wore off I was introduced to the morphine pump. As I had already read that morphine can slow your bowels down I had decided to avoid using it if I could, and in fact I only pressed it once the whole time it was connected. My pain was really not so bad and I actually managed to get out of bed on day one and stagger up and down the ward dragging my drip and catheter. Day 2 my drip and the morphine was disconnected leaving just the catheter. I wasn’t so uncomfortable. I was taking regular paracetamol and also over day 2 and 3 took just 2 codeines, but again as a morphine based drug I was trying to avoid them if possible. The staff left it up to me whether I needed pain killers or not and whether to take just paracetamol or paracetamol and codeine. I was also given low dose heparin every day to guard against blood clots ( I was also continuously wearing elastic stockings for the same reason)
Surprisingly I wasn’t on any special diet- my consultant said eat what I want within reason, but suggested eat easy to digest stuff. Having already read up on low residue diets, I stuck to white bread, pasta, potato, yoghurt mainly with a tiny bit of fish and the mush they call meat in shepherds pie. On day 2 I passed some bloody mucus and thought I was on the move – but this was just a false start. The hospital want to see your bowels working again as soon as possible, and certainly in my hospital won't discharge you until they know you are working.
In hindsight I’m not sure the low residue diet worked in my favour as I think it actually blocked me up slightly. Day 3. No movements, but by now disconnected from the catheter. My wounds didn’t have any dressings, stitched or staples – basically the surgeon had used some sort of “superglue” – the wounds were covered in a shiny covering just like if you put superglue on your skin. Joy – I was allowed to use the shower.
By now I was feeling really good. Still on paracetamol, but no codeine. Sitting in my chair. Watching TV on my laptop. My dear wife was now bringing me in extra food – home made salmon pasta salad, peanut butter sandwiches, because hospital food wasn’t that great. Day 3 and 4 I felt a bit of a fraud amongst the “ill” people. (although I was on a gastro ward, the other occupants were very elderly with other issues). I was walking myself to the toilet, showering, feeling almost normal. They wouldn’t discharge me though until there was a proper movement, and my systems just seemed dormant. I was starting to get worried – I had a really good appetite and was piling food in the top, with nothing coming out the bottom. No-one else was worried – this seemed to be pretty normal. They said they would only get worried if I started being sick as this was a symptom of “Ileus”, - this would mean my bowels were temporarily paralysed after all their handling. Apparently when you get this, it isn’t just a little bit of vomiting – it’s the full-house projectile. Fortunately I didn’t get this.
Throughout my time on the ward I was walking about as much as I could. I am certain this really helped. I would walk monotonously up and down the ward, and during visiting walk down to the front entrance. On day 4 we even walked off the hospital grounds to the local supermarket cafe.
Day 5 – Easter Monday. My own surgeon was back (I’d seen his colleague over the weekend). He decided that he would try kick-starting my system with a tiny bit of laxative – I took a single child's dose of lactulose first thing. About 11:00 bingo! First lots of rumblings and then…..a small amount of Proper Poo! This may not even have been the laxative, because it is supposed to take a while to kick in. I declined the second dose of lactulose and during midday visiting everybody confirmed I could be discharged if my system was working. Agreed to review by afternoon visiting. During the afternoon more system activity, so by the time my wife came back, I was dressed in civvies and ready to go home. My take home drugs had already been prepared in anticipation – more paracetomol, some codeine and 28 days worth of low dose heparin injections to self-administer.
Home! Still no diet advice (except avoid nuts and seeds as they might get stuck in the join). We like our home-cooked food, and pretty much went straight back to relatively normal diet. I avoided heavy meat, but ate chicken, fish, veggy lasagne, pizza, salad. All systems seemed to be working fairly normally. First few days some movements were a bit soft, but soon “normal” consistency. Both myself and my wife were extremely surprised how good my appetite was. After a week, I even allowed myself a single small beer. I will add, that since day 2 in hospital when I started eating properly, and with my consultant's approval, I have been taking one probiotic tab a day. Has it helped? I don't really know - but I was told can't do any harm and may do some good. There is some evidence out there to support this.
Obviously during the op they had removed a goodly section of my bowel, blood vessels, lymph nodes and sent them off to the lab. At this stage I was still down as T3N0M0. It’s a worrying time waiting for the results, and another opportunity to research on t’internet. This time about adjuvant chemotherapy (I had got it in my head that at least one lymph node would be “positive”). Now the next bit is a bit controversial, and is a very personal thing that not everyone will agree with – I decided, based on much research, that the benefit of adjuvant chemo for 1-2 lymph nodes was pretty small, weighed against what I knew, had seen in the past and read about chemotherapy, and I made up my mind that even if there was 1-2 nodes involved I would not do the chemo - at least at first. I would rely on surgery having removed the cancer and would see if my own immune systems would deal with the potential of any residual imposter cells. I’m not going to post the sources that brought me to this decision – if you are in the same place, do your own research and make up your own mind. This is very much a risks and benefits decision. Part of my reasoning was I was just feeling so well – virtually no pain, systems normal. The only change was I was “going” 2-3 times a day instead of 1-2.
About 10 days later I got “the call”. My cancer was downgraded to T2N0M0. I was now classified as Stage 1 rather than Stage 2. Apparently the growth was “mobile” with clear margins. No lymph node involvement, and of course my CT scan had also been clear. Basically, my nurse, who incidentally had been phoning me up daily to check up how I was doing, said “no further treatment – get on with your life – see you in 6 weeks just for a follow up”. She also confirmed I would be followed up for 5 years with regular scans and colonoscopies.
So here we are. 3 weeks after my op tomorrow. I feel absolutely fine. My wounds have virtually healed. I can feel a knobbly bit under the skin under my main scar which I guess is where the muscle is closed up. I haven’t taken any painkillers for over a week. I’m driving, eating a normal diet, including at the local Italian Restaurant, and the only change is I do have to “go” very slightly more often (which is hardly surprising as I now have a little less “storage” in my bowel), but this is no big deal. Also I don’t get a sudden “urge” and have to go NOW – it’s all very normal and controllable.
I am not naïve; I realise this is still early days and may not be the end of my journey, but hopefully I will follow in the tracks of my Uncle who I recently discovered had the same operation (albeit with a temporary ileostomy)in 1986, and is still very much with us aged 84.
I have to take it easy for another 4 weeks or so, so the house renovation is on hold for a bit – I don’t want to go back for a hernia operation! I’m back at work. Life goes on with fingers crossed.
I hope my experience helps some people. Everybody’s journey is different. I have no idea whether I’m atypical or not. The hospital staff did say I was doing extremely well, but at no time indicated I was particularly unique. I suspect that the proportion of people who post on forums is disproportionately weighted towards those that have bigger challenges, rather than those who manage to escape relatively unscathed, so I hope this post helps some people to realise there is a spectrum of outcomes, and to stay positive! I undoubtedly feel lady luck has been on my side this time.
And finally, a word of praise to the NHS; my hospital is an ordinary district general in Lancashire. I cannot praise the team from end to end highly enough. Everyone has been helpful, conscientious and just great. Yes, they were a bit understaffed at times – particularly at night over easter, and yes, the food is a bit dismal, but these are very minor issues when the quality of care overall has been so good.