Tim Slater, Derby
Part #1 – Worried about bowel cancer
I think the start point of my story would be around November / December 2020, the time when Covid was increasing and we were heading in to the next lockdown. As a Paramedic and senior manager within the NHS ambulance service, I was well aware of the enormous pressures we were all under at the time, seeing it from the points of view of both a staff member and an active, family man, feeling limited in what we could do. Around this time I started to see blood on toilet paper when passing stools – nothing else was untoward so as I had just turned 50, in the middle age man territory, I decided to self-diagnose and treat myself for piles (haemorrhoids). I knew access to GP and primary care services was difficult and precious (certainly with my own practice) so didn’t want to burden anyone. So I opted to try the creams and suppositories readily available over the counter.
Like most people, it felt like I was already on a rollercoaster ride as winter 2020 in to 2021 was so hectic. I didn’t really register that I had begun a very long ride that would take me up to (and probably beyond) today, in September 2022, as a write this story. I continued to see blood and equally continued to periodically use the treatments I had, thinking to myself that I perhaps should get it checked out at some point. I wasn’t worried because I didn’t have any other worrying or tell-tale symptoms. In fact, I was eating too well and putting on weight and was even starting to exercise more (mainly walking and riding my new lockdown purchase of a pushbike).
Skip to May 2021 and myself and my wife (Sam) went away to Cornwall on a gastro tour that had been postponed from 2020. We stayed in Padstow and Port Isaac and ate some amazing food. However, even at the beginning of the holiday, I was starting to feel a bit bloated so coupled with a slight change in bowel habits, which seemed to alternate between a bit of constipation or a bit of diarrhoea, still with a bit of bleeding, I suspected it could be IBS. I bought myself some Colofac in Padstow and then enjoyed a great and well needed, first holiday after Covid and lockdowns.
When I returned home, I promised myself that I would try and see my GP. I had already tried a few times earlier in May but after many calls with automated messages, I generally gave up trying as I didn’t see myself as an urgent case. It was the same again in June and July when I periodically remembered to try and get an appointment, normally too late to get one of the on the day appointment that you have to ring for from 8am – our surgery didn’t allow any online booking. We also had other stuff happening like my eldest daughter and future son-in-law moving in to their first house and I was still really busy at work.
So life carried on but I was becoming aware that I was wanting to go to the toilet a lot, especially during the night, with a dual urge to pass urine and pass motions at the same time. Generally though, it was only urine I would pass but with a bit of blood instead of any stools. The bloated feeling and variable bowel habits continued, but I was eating well, keeping weight on, was getting active as I love summer and longer days and was looking forward to a big holiday.
I had turned fifty in 2020 and we had a big holiday planned – a trip to Majorca with two families, so nine people. The trip was moved to August 2021 so we certainly did our utmost to make it an amazing holiday, which it was. We ate out a lot, swum, a lot of home partying and I even rode a pushbike for over 30 miles (it was a hybrid electric so a bit of help) in over 30 degrees heat. What I did become really aware of though was during the night, I was going to the toilet almost every hour, needing to pass urine, and also pass blood and/or stools. I conceded something was wrong – it took being somewhere different with different toilet arrangements to bring this home. I actually thought it may be prostate related but committed to trying harder to see my GP when we got home. So at the end of August, I did exactly that….
Over a four day period, I made a total of 92 calls to my GP practice, either getting the engaged tone, or automated messages. Again there was the temptation to give up trying but by now, I knew I needed this sorting, even if it was just bad internal piles! I finally got a telephone consultation appointment on day four and after the GP listened to my history, asked me to come in to see them. This appointment was the following week but the day before, was cancelled as that GP was ill. I spoke to the surgery and said I really needed to be seen and they asked if I minded the gender of the clinician. Absolutely not – I was grateful to see anyone, so a day later than planned, I did….
Part #2 – Just diagnosed and treatment
You may wonder why I have split my story in to two parts. The reason is that I want people to take something away from part #1, before becoming emotionally caught up in part #2. I have worked for the NHS for 28 years, a large proportion as a frontline clinician, but also equally as long as a leader/manager (yes, I think I do both). This allows me to see the immense pressures and also the incredible work NHS providers do, especially by working together across organisations. At times I have to show admiration but also conceal frustration with the various aspects of primary care – during Covid; I saw some amazing GP led work. However, as a patient, I became frustrated with trying to get appointments and often gave up. What I want readers to take away is my plea not to give up if you think something is wrong. Be honest with yourself and also seek advice, being honest with whoever you see or speak to. Takeaway message #1.
So I saw a GP on the 2nd September 2021 and she was brilliant. Even now a year on, I struggle to say the words “she saved my life” and even well up typing it, but I think she certainly may have. She listened carefully to what I said and I was honest and detailed, right back to when things may have started and what I had tried myself. She checked for piles and there weren’t any – I was kind of happy and shocked at the same time. She opted to refer me on the urgent two-week colonoscopy pathway – she clearly picked up enough red flags even though I felt relatively well, continued to eat well and no loss of weight. She also booked me in for urgent blood tests. She didn’t opt to send me away and try a few more meds, or change diets, which I know many have faced and been missed earlier.
The referral was done and received the following day and I got an appointment for exactly two weeks later, the 17th September. Things carried on and I only really started to get anxious when I had to do the prep. If anyone tells you that Moviprep is lemon flavoured, don’t believe them. It took me ages to face lemons again. Anyway, late on the Friday afternoon of the 17th, I had my colonoscopy. I opted for sedation and just lay there happily chatting to a nurse who part way through, came and sat at my head end of the bed whilst they carried on. She was so caring and nice and I guess at that point, they knew.
So as I recovered with my hot chocolate and biscuits, they asked about Sam coming to collect me. I presumed this was normal due to having sedation but they asked how long she would be. She had gone back to work so I said about 15 minutes and they said “OK we are going to ring her”. By the time she had arrived, I was up and dressed but suddenly I was aware that me and Sam were being accompanied by a nurse and asked to come in to a side room. When I went in and saw the two endoscopy clinicians sat waiting, I absolutely knew straight away that this was bad news. They asked for a bit of a summary of what had happened, I told them bits including the on/off efforts to see a GP and they effectively said they were glad I didn’t give up and they had found cancer. No “possibly” or “suspected”, what they had found was enough. They then explained next steps such as nurse specialist, biopsy results, MDTs etc. but it was like a distant sound. We came home and spent a shell-shocked weekend gradually telling family and close friends. I was lucky and got CT and MRI scans the following week but it then became a waiting game. Also during the gap between colonoscopy and scans, my GP (who saw and referred me) phoned to discuss my blood results. She had no idea I had been told I had cancer and in a very distressed outburst, I told her what I thought about GP access at our surgery. She took it, was supportive in terms of my current needs and afterwards I felt a bit bad as she was potentially one of the people who may have saved my life.
Two to three weeks passed and I periodically asked my nurse specialist if biopsy results were back so my case could go to MDT. This happened at the end of the third week but those three weeks (at that point) were the worst of my life. I constantly worried about a cancer that was rapidly spreading or had already spread, every ache and pain elsewhere being something related. My results came back and I hadn’t got any spread, so I was initially T3, N1, M0. This actually came as a massive relief and I started to build up to fighting this and getting rid quickly. I had appointments with a surgeon who was brilliant – explained things both simply and in a bit more detail once she knew my background. The plan was to remove the tumour (rather than chemo/radiotherapy first) and it would be an anterior resection, plus or minus a stoma. Again, I was almost happy that they were going with a removal first, no idea why other than the get it out as soon as possible feeling. I got a date through for my surgery, 11th November 2021. I also saw a brilliant stoma nurse (Sarah at Royal Derby, now my colorectal nurse) who massively eased any fears of a stoma.I forgot to mention that for each in-patient appointment, I also had to be Covid swabbed and then isolate for three days – more time to think/dwell, which wasn’t good.
So the 11th eventually arrived and after fasting overnight, arrived at 7am as requested. I then said goodbye to Sam and went in to be admitted and prepped. This included a double phosphorous enema as I had somehow managed to avoid Moviprep. So I was changed, prepped and ready for surgery so I waited. In total, I waited about eight hours, occasionally hearing from the nurses that I shouldn’t be too long now, when my two surgeons came to tell me they had to postpone my op as theatre slots had overrun. I was absolutely devastated – they tried to be (and were) really kind and sympathetic but couldn’t tell me when I would be rescheduled. They did promise to get me back as soon as possible.
So exactly two-weeks later I was back. I had to go through the same pre admission prep but didn’t manage to dodge Moviprep this time – my surgeon didn’t want anything to potentially delay things. The two week delay had been awful – myself and even my family were just in a stunned daze for the first two days. I have got to now say this for the first time, but not the last. My family, close friends and close work colleagues were amazing from day 1 (whenever that was) and continue to be throughout. It makes me think about people going through a cancer journey without people close by and how difficult and lonely that could be. Cancer support services can be amazing (my go to place was and still is Bowel Cancer UK) but sometimes you need to ask for things as they aren’t always automatically offered. I also know how to navigate the NHS, others may not. We all need to look out for people and don’t make bowel cancer or any cancer a taboo subject if faced with it. Takeaway messages number #2.
Second time around, my surgery happened and by all accounts, went well. When I came around enough in the recovery area, the first thing I did was look for a stoma. Incredibly I sighed with relief as it was on the right side of my abdomen and I took this to be a temporary stoma. My surgeons came to see me afterwards and said things had gone well and as planned, they had removed everything (tumour and surrounding lymph nodes) and yes it was a temporary loop ileostomy. They had even phone Sam to update her and when they told her about the ileostomy, she had told them I would be pleased with that. I will say this now, the stoma was a small price to pay for a) having the tumour removed and b) being alive and able to carry on the fight. My five day hospital stay was pretty uneventful and I certainly followed the enhanced recovery programme. I was up and walking about the following morning, even up some stairs with a physio. I was “trained” in my stoma care, wounds healed well, and diet returned to some normality so able to be discharged. I even nagged nurses to nag doctors to get on with discharge process and don’t make me a medically fit delayed discharge.
My recovery continued well at home, the stoma nurse (who was the only real contact for a while) was happy with my progress and I had a stable routine and settled stoma set-up. I ate well, did my exercises, jabbed my belly for two weeks and generally got fitter and happier. It even allowed for a nice Christmas and New Year – not full on, but time with family and friends and my new stoma.
January 2022 brought the next steps – my surgery and histology had confirmed staging (still T3, N1, M0) but this meant I would require a mop-up course of chemotherapy. Now I honestly thought I would go and see the oncologist and come away with a big bag of tablet form chemo. Wrong, he wanted to give me a six month and 8 cycle course of Capox/Xelox as I was young, doing well and would be able to tolerate this. So I took it on the chin and so it began.
I have to say be chemo was truly awful – I posted a fair bit on the really good Bowel Cancer UK forum so if you want to read more, look me up (slimtater). I can only say that by cycle 4, I was on a slightly reduced dose and it ended up being my last cycle. This really worried Sam but after me trying to convince her with research evidence, another oncologist who I saw at the end of cycle 3, was fantastic in listening, informing and managing my symptoms. She also assured Sam that 4 cycles was also acceptable and often the normal for my staging.
So by April/Easter 2022, my chemo was done. I felt broken mentally and physically – horrendous nausea and a complete phobia of taking oral tablets, along with other things that took ages to settle. I did recover enough to proudly drive my daughter to her wedding at the end of May (I have a classic car) and walk her down the aisle. It was a fabulous day but also very emotional, especially during my own, the groom’s and best man’s speeches, as the latter two had both acknowledged the battle I had been fighting. I admit to some tears but overall, a brilliant and memorable day.
Part #3 – Moving on from bowel cancer (well trying to)
The first thing to say is that myself and Sam started a bucket list at some point during the period after being diagnosed. This isn’t anything radical like skydiving or balloon trips, just places we would like to go to or return to, such as restaurants in Cornwall. It later becomes really nice to tick things off as complete, but then also to add new stuff. Make one – doesn’t matter how small or big.
So I started thinking and asking about next steps. I had a cancer blood test a few months after finishing chemo which came back as normal (certainly reduced from the last one) but haven’t had scans yet. Apparently they will come later in the year around one year after my surgery – I know some people had them after chemo, but not me. So I don’t actually know if I am classed as in remission or cancer free, I haven’t been told despite asking. However, I am just trying to live my life, albeit not yet 100%. Not long after finishing chemo, I got terrible blisters on the soles of my feet and after this, the new skin grew and felt odd – almost like scars after being burnt. Gradually, from May 2022 onwards, what I know as neuropathy increased and increased in my feet. I found this really odd as during the chemo, the neuropathy was mainly in my hands and mainly related to cold things or weather. I also started back doing some work, albeit limited hours and from home, but this has been hindered by my neuropathy and general fatigue. Again, I persevered for as long as possible before finally getting an appointment with a GP in September. A different GP but again she was excellent – very kind, caring and thorough. She gave me a thorough examination, blood tests and also prescribed Pregabalin, which after a few days has started to take the edge off the neuropathy. So despite my initial difficulty in seeing a GP, the two I have physically seen in the last year (Sept. 21 to Sept. 22) have both been excellent. I haven’t seen a GP other than that during my journey so far, with most things (sick notes) being done online or a couple of phone calls prior to returning to work.
The other area I have been dealing with is my stoma and the potential for a reversal. I have to say, despite the inconvenience of having one and the impact on self-confidence, it really has behaved itself. I also haven’t let it stop me doing things, albeit sometimes more cautiously. One of the highlights was swimming in the sea on holiday this summer, something I feared I wouldn’t be able to do. The stoma story deserves a section of its own but for me, I see a potential reversal as a big step in moving on, as it is a constant reminder of my cancer. I am massively grateful for having the option of having this reserved when I know others may not be as fortunate.
Part #4 – Jacob, my stoma (don’t ask why Jacob, as it is TOO political)
As I have said, I really can’t complain about my stoma. Touch wood, very few issues and the last time I had any real drama with it was way back on Boxing Day 2021, as a result of overindulging Christmas dinner. Family and friends have also commented on how I have just got on with it. Like the neuropathy, I see it as a small price to pay for life.
The journey to a reversal hasn’t been smooth so far. My contrast enema x-ray revealed some narrowing at my join so my surgeon requested a colonoscopy to check the join and also to remove some polyps previously untouched. Unfortunately the colonoscopy was aborted when they found the narrowing prevented the scope passing through. They also weren’t able to do a balloon dilation there and then due to me being under sedation and not able to gain legitimate consent. Grrrr. It’s worth discussing every possible scenario on your pre assessment if you can – I thought I had. I was then re-booked for a flexible sigmoidoscopy with balloon dilation and polypectomy. This was August 2022 and after going through all the prep, admission and get ready, the doctor who I had been listed for told me he wasn’t able to do balloon dilations and there was nobody else available. Grrr again, and a bit of déjà vu? After leaving in a bit of a huff I got home and later received a call. I was booked in for four weeks later.
Which brings me to today and now, September 2022. Waiting for the next steps; hopefully a successful procedure, a listing for reversal and some annual screening at the end of the year. I continue to do as much as I can (ticking off the list if possible) and want to try and work more. I still feel like I am on a rollercoaster and would like to get off soon, but there continue to be twists and turns as well as ups and downs. I may have written my story and it is mainly about me. However, first and foremost I want to dedicate it to my wife Sam. I cannot describe in words what she has done for me throughout, above and beyond is an understatement. My two beautiful daughters (Emily and Hannah) have been amazing support as well, Emily dealing with her wedding planning and Hannah completing her first class honours degree in Psychology during my darkest times (perhaps I made a good subject to study?). Other family and friends have been equally amazing but also be mindful that cancer can scare some people (away), so you have to bring them back close to you. People also can surprise you. Just after my diagnosis, Emily had her birthday coming up. She set up a Facebook page saying rather than presents, she wanted donations to Bowel Cancer UK. At a dark time, a shining light – she raised nearly £600. Also, remember there is no such thing as a stupid question so always ask – remember the Bowel Cancer UK forum and its search feature, you will be amazed. Coincidentally, I had a very close work colleague with a similar diagnosis, timing and journey. We used to talk about work, football and cars but instead talk about stoma bag types and compared strange chemo side effects e.g. hiccups! How life changes…
