Ceri Steele – diagnosed in October 2019

My name is Ceri Steele, I was diagnosed with oesophageal cancer on 17 October 2019, three days before my 55^th birthday. Before diagnosis, I had been underweight for a long time, though that was through lifestyle choices rather than cancer – I considered myself fit and was active every day, going to the gym, exercising, etc.

In July 2019, I was with my parents in Wales – we were out one evening, and I experienced some difficulty swallowing, and this difficulty swallowing intermittently reoccurred over the next few weeks– I mentioned it to my mother, a retired nurse. She said it was probably me eating too quickly but to talk to the doctor if I was concerned. Having no experience of oesophageal cancer (not even knowing it was a thing), I just assumed I was eating too quickly and slowed down my eating. This, however, didn’t make much difference, and the difficulty swallowing became more frequent and often resulted in me being unable to swallow part of my meals.

At the end of September 2019, I went to the doctor– he referred me for an endoscopy but reassured me that 98 out of 100 results in a reasonably straightforward answer – cancer wasn’t mentioned at that point. However, I have since learned that he had sent the referral on the 2-week fast track suspected oesophageal cancer form. I Googled swallowing issues, and by the time my endoscopy happened (9 October 2019), I had everything from hiatus hernia to non-Hodgkin’s lymphoma. Still, I had dismissed oesophageal cancer because the typical patient profile was male, over 65, smoker, and drinker – I was none of those.

My parents took me for the endoscopy (Frimley Park Hospital), which I had under sedation – the nurse specialist who carried it out came to see me in the recovery area after and asked if I wanted to hear her findings before my parents arrived to take me home or to wait for them. She was part-way through telling me when they came, and I think they could see on my face that it wasn’t good news. The nurse said that she had taken several biopsies and that my oesophagus looked very ulcerated and inflamed, and while she couldn’t be sure until the biopsy results came back, she was pretty sure it was cancer. The nurse said we would meet with the results the following week and told me not to Google anything until she said I could!

The following week (17 October 2019), I met with the nurse, my parents and my sister-in-law, and she confirmed her original suspicions that it was cancer. The news was not a complete shock, having already been told her suspicions the week before, but we had no history of this type of cancer in my family, and many of my friends were, like me, unaware that it was even a thing.

After a couple more meetings with her, my case was discussed at the multidisciplinary team(MDT) meetings, and my care/treatment plan was transferred to St. Luke’s Centre for Cancer at the Royal Surrey. The treatment plan involved me initially having another staging endoscopy followed by the insertion of a jejunostomy (JEJ) feeding tube inserted through the skin of my abdomen into the midsection of my small intestine; it bypassed my stomach. By this time, I was already down to liquids only that I could swallow, and they were pretty sure that I would lose my swallow completely, so they wanted to get the tube in as quickly as possible while I was still reasonably fit and healthy. I hated the feeding tube from the first day because it represented that I was ill, but it did save my life.

My diagnosis at the start was T4bN2M0 (TNM Staging), and my treatment plan was designed to be curative – at that time, I had not taken in that my tumour was very close to my aorta and described as quite bulky, which made it inoperable. I was to have chemo once every three weeks with tablets in between for five cycles, with radiotherapy daily for the last five weeks of treatment. This started at the beginning of December 2019, and shortly after the second chemo infusion on Christmas Eve, my swallow disappeared completely, so I relied on my feeding tube. This led to a change in my chemo regime – the mix was changed. It was administered weekly for six weeks (with radiotherapy alongside) with no tablets to swallow, even though I could still swallow other tablets I had to take.

During this treatment, my life changed a lot – I could not sustain regular exercise due to increasing levels of tiredness, and I couldn’t go out much because I had to hook up to the feed every night. I was very reliant on my family to keep me going. I was very down, and my parents suggested I move back in with them, but I refused because I was still working and could not do that from their house. By the end of the radiotherapy course, I was so tired – I realised what people meant when they said they were bone-tired because I was, and it took me about four weeks to start to come out of that.

I knew that I had to wait for 12 weeks for a follow-up endoscopy to see if the treatment had worked and if I was cancer-free – at that time, I was still unable to swallow but was slowly beginning to find more energy and then COVID came along. That, for me, was really hard – I lived on my own and was classed as highly vulnerable, so I had to shield. I could not see my family or friends, which caused me to become even more depressed and heightened my anxiety about my illness and everything else – at times, I was so wound up that I could hardly talk. Fortunately, my sister video-called me daily, and my brother would come by most days and talk to me through the window. This helped a lot, and although I couldn’t go near people, I could still get out to the park nearby for walks.

Obviously, at that point, everything within the NHS was paused. At the same time, they considered the way forward – I was terrified that I would get forgotten about and that my 12 weeks would pass and I wouldn’t have my endoscopy – I probably drove everyone mad with my anxiety and phone calls. Luckily, it was only delayed for maybe a week or two. Coincidentally, for that endoscopy, the nurse specialist was the same one who had carried out my first one. This helped relax me, but she could not pass the scope all the way down, so I had another one, with a dilatation, two weeks later.

The dilatation opened up my oesophagus enough for me to eat soup and yoghurt again (if I never see either again, I will be happy!). However, the results showed that I still had cancer – this news I received via a telephone appointment with one of my oncology team. The tumour had shrunk but was still there – my new diagnosis was T4aN2M0. Not the best way to be told the news, but my sister-in-law was on the other side of the room with the phone on speaker, so I had some support.

At that point, I was offered the choice of living with the tumour, and they would make things as comfortable for me as possible until it came to the point when they could do no more, or I could have a total oesophagectomy. That was a no-brainer as far as I was concerned – I wasn’t going to live with this thing in me that I had never wanted to start with. So, I then met with the surgeon at the Royal Surrey. He outlined the procedure and the worst-case scenarios, etc., and offered me immunotherapy initially to see if that could further shrink the tumour, but I just wanted to get rid of it.

I had a thoracoscopy first to see if the tumour was not interfering with the lung space, and then, two weeks later, on 19 August, I had a total oesophagectomy. This was carried out with Covid restrictions, so my sister had to leave me at the hospital door, and no visitors were allowed. I spent a few days in ICU and was then moved to a ward but had to be moved back to ICU as I developed difficulties with my breathing; I eventually moved back up to the ward about ten days after my operation and stayed there for another 11 days.

At that time, I, like everyone else, wasn’t allowed visitors – I found this hard because I am close to my family and had come to rely so much on my brother and sister (both older than me) to keep me looking forward and remaining positive. I never doubted any of my hospital team, but it was hard to stay upbeat and, at times, I was so lonely in the hospital. The hospital staff (nurses, healthcare assistants, doctors etc.) were amazing – they took the place of visitors for us all, but nothing can quite replace family.

After three weeks, I was discharged and stayed with my brother and his wife for a few days before returning to my flat – I was still using my feeding tube but could now eat soft food. Over time, my dependence on the tube decreased as my ability to eat more solid food increased, and five months after my operation, I stopped using the tube.

In the months following my operation, my body went into a slight melt-down because I had pericardial effusion, shingles on my face and three chest infections, probably caused by aspirating acid reflux – this covered the period of September 2020 through to May 2021 – I was hospitalised six times as a result and now have bronchiectasis. None of this helped with my anxiety issues which were becoming more and more of a problem.

When I was initially diagnosed, people told me I would need counselling; although I didn’t think I did and was resistant to the idea, I eventually gave in. I started counselling through the Fountain Centre (cancer charity at St Luke’s), but at that time, it wasn’t right for me – I still believed I could make this ‘journey’ alone, and the counsellor and I parted ways. Throughout my treatment, I was supported by the hospital team, including the nurse specialists at both Frimley Park and the Royal Surrey and the dietitians, especially one who rang me every week or so right up till early 2022 when I said I had to be a big girl and stand on my own feet.

I went back to counselling in March 2021 – I found that all my anxiety issues about my health, COVID etc. were too much for me to deal with alone, so I returned to the Fountain Centre and was matched with another fantastic counsellor. All our meetings were via Zoom, but she talked with me and worked with me for about six months – I also had 2 Macmillan buddies and a counsellor through TalkPlus. This brought me through to early 2022; by then, I began to feel that I could deal with life independently. My family and friends were all amazing too – I worried that I would get forgotten or that people would leave me because I couldn’t do the things I had been able to do before, but they all told me that friends don’t do that!

All this time, I was still trying to return to how I was before, but during Easter 2022, I went out for a few lovely walks with my sister. I realised that, even if things didn’t get any better than where I was now, maybe that wasn’t such a bad thing – if I could walk with my family and friends and live life rather than worrying all the time about being super fit (for what?), then that was good enough for me.

My advice to people newly diagnosed is to have faith in the medical team, listen to them and ask questions, tell people your worries and be positive.

To the world, don’t ignore acid reflux, indigestion and swallowing issues – see a doctor and get it looked at sooner than later!