A reason to run If you have followed our news section for any length of time you may well have come across Chrissy before. She runs marathons, lots of them, in memory of her late husband, John who died as a result of oesophageal cancer in 2018. She raises funds to support our work and awareness of the early symptoms of this disease. I explained that Chrissy runs marathons. She has completed well over 100 and last year challenged herself to run 52 marathons in 52 weeks. On 19th of May she will commence what seems like her hardest fundraising challenge yet, 10 marathons in 10 days as part of an organised event on the scenic paths alongside The River Thames. Chrissy has very generously shared with us some words that John wrote for a talk about his journey though oesophageal cancer. There seems no better way to honour his memory or to explain Chrissy’s reason for undertaking this incredible challenge than to publish them for you to read. The following paragraphs are the words of John Gorham: “This description of my journey inevitably encompasses some of the impact on my wife, Chrissy, who has been by my side throughout and given me more support and guidance than I believe I can ever repay. I think it is valuable to give you some background. In June 2015 I stopped working full time after 44 years of desk bound work. In order to counterbalance this sedentary lifestyle I began running 35 years ago and since I met Chrissy ten years ago have upped my mileage that enabled me to run 50 marathons between 2009 and 2016, virtually all of them with Chrissy alongside me. We ate a healthy diet, I rarely drank to excess and I have never smoked. My annual medical at work showed me to be above average fitness and generally in good health. We did not consider me to be a candidate for cancer. All that started to change in late 2015. After a few months of resettling into a new lifestyle with plans to do some consultancy work, undertake a post-graduate course, build a small portfolio of local voluntary activities and making more time for long distance running and/or walking, life in the third age looked positive. Back to late 2015 I had problems swallowing. My GP wondered if I might have an ulcer. However, I failed to respond to anti-ulcer medication. An endoscopy was lined up for early in January 2016. A procedure that changed everything. After what felt like an hour of poking around the doctor asked if we wanted to know what he thought the problem was. How can you say, “no?” Oesophageal cancer was his reply. As I said, cancer never entered my mind. It was numbing. I felt dazed and heard very little after that except being told that whatever plans we had in the next year to either cancel or be prepared to change them. If only it had been that straightforward for us! I did what I expect most people do and looked on the internet to research oesophageal cancer. What hit me between the eyes was the low survival rate, only 60% after one year of diagnosis and a paltry 15% after five years. A background in risk management has taught me that statistics on their own can be misleading. I was feeling fit and well and the population that these survival rates are drawn from is wide and it would include many who may have other factors such as age, lifestyle, fitness, co-morbidities etc. I feel more positive. We speak to the specialist nurse in the Upper GI team that I have been referred to. She shares our view and warns of reading too much especially outside respected websites. I restrict myself to Heartburn Cancer UK, Cancer Research UK and Macmillan. Time for my first appointment with the Upper GI team – oncologist, surgeon and specialist nurse. My CT scan shows the tumour at the top of my stomach. The plan is radiotherapy for three weeks on the tumour followed by surgery to remove the whole oesophagus and stretch my stomach and attach it to my throat. I feel somewhat apprehensive but we remain positive and confident that the tumour will be successfully removed later in the year. The surgeon tells me to stay fit. He usually tells his patients that to make a good recovery they need to be fit enough to run a marathon! He tells me to fill out in my upper body. Meat is what I need for protein and he is rather sceptical of my predominately vegetarian diet. We leave the initial and planning appointments feeling positive and emotionally sound. I had been referred for a PET scan. This showed the two lymph nodes near my throat were malignant. Back to the GI clinic and a change of plan. The surgeon is not confident he can scoop out all the malignant cells. Our mood changes with this uncertainty. Rather than radiotherapy to a specific site the plan is chemotherapy. Three months of it and then see what the position is. More uncertainty. Chemotherapy treatment was horrible. I am not good around hospitals and when it comes to people putting poison into my body intravenously, I am even more anxious. To this time, I have felt physically fine. Chemotherapy gave me different side effects each time I had it. I had three weekly intravenous sessions with daily tablets in between. It made me sluggish for around a week and a half after each infusion, it made my hands and feet remarkably cold, I felt nauseous. The strange thing is that the condition was not making me feel as unwell as the treatment was. We looked beyond all of this for the greater good. It was also here that mindfulness became a useful tool. The future was uncertain and there was little point raking through the past. Staying in the moment was key but challenging. With chemotherapy completed the anxiety of the results was with us. Will surgery be possible? It increases the hope if it is. News from the specialist nurse. Surgery looks possible. There is a feeling of relief although it is major surgery with a couple of days in the high dependency unit to look forward to. Looking beyond is most positive but staying in the moment is also important. We discuss the options with the surgeon and the oncologist. They are limited. Oesophagectomy is the only real option. We run through the risks. There are many. I sign the consent forms and we go off to run a couple of off-road marathons. I feel fit and it helps with coping with the condition. It is late August 2016. We are now in October 2016. One of the biggest days of my life. I am surprised how relaxed I feel. Maybe because it has to be done. I feel confident that it will be successful. Eight hours in surgery and I recall coming round within an hour but I remained in recovery until around eleven o’clock at night. Chrissy has been told by the surgeon that he may have damaged my vocal chords. As I am being wheeled to the high dependency unit I say hello to her. It is easy to spot her. There is hardly anyone in the hospital at that time. I don’t understand how relieved she was. I am in hospital a week. For the first two days I have around 20 tubes, i/v feeds and wires attached to me. Gradually they come out. I am walking the day after my operation. My surgeon would have liked me out of bed the same day but there was only 30 minutes of the day left and the HDU staff having spent more than 30 minutes getting me from trolley and settled in bed politely said no! Walking first with two nurses, one on either side and then with Chrissy followed by a transfer to the ward where I had to walk on my own manhandling my drip stand. The good progress I am making makes me feel very positive. Once home I am struggling more than I thought but we get out for a walk each day. By Christmas time I am ready to try a run. I do that on Christmas Eve. It is an early Christmas present. It is not pain free. A compression top helps the jiggling stomach but restricts the breathing. It is good to be back. The new-year arrives. 2017. The roller coaster ride begins again. The CT scan after my operation shows that I have cancer in two other lymph nodes in my neck/throat area. I require combined radiotherapy and chemotherapy. Five weeks of daily visits to hospital in April/May 2017. Having got back to running and rolled over my entry for London Marathon from 2016 because I was having chemotherapy. Having run a half marathon in February and 15 miles in March I was hopeful of a combined running and walking effort in London. After a few miles I was already struggling, we saw my daughter at eleven miles and I decided to drop out at half way. I haven’t run nearly as far since. Weakened by radiotherapy and chemotherapy I was further weakened by a bowel blockage in June 2016. Another major operation and eleven days in hospital, three days in severe pain awaiting the operation and eight days recovering. Having lost some weight from the oesophagectomy, I couldn’t eat before the operation and hardly ate much after. I was physically weakened and have not fully recovered since. Whilst in hospital I had an ultrasound scan and biopsy taken on a swollen upper left jaw. It transpired that I had cancer cells and would require radiotherapy. On top of that it didn’t help that I could not open my mouth very wide thus severely restricting how much food I could actually get into my mouth. Each treatment is now sapping me physically and whilst still feeling reasonably well mentally we were being challenged by when all of this would end. The continual problems preventing us from planning anything and feeling that we were always at the behest of the hospital appointment system. August 2017 and I am back for three weeks radiotherapy on my upper jaw. We manage to get a week away in Wales in October. It is predictably wet but we manage several longish walks (10 to 14 miles). Despite stomach pains life feels a bit more normal. Back for the next scan and when the results come through they are the most flattening yet. To be fair it was not unexpected when we found out that I had cancer cells in my liver and lungs and that we are moving from curative treatments to managing treatments. I still feel fairly physically well but the mental and emotional blow is measurable. The only glimmer of hope is that the new cancer cells are very small and may not be fast growing. We hold on to that. My oncologist will seek out an appropriate treatment plan. Three possibilities – an immunotherapy trial at Southampton hospital, a possibility of joining a trial at Royal Marsden or more chemotherapy. It would be better to have a more targeted treatment than chemotherapy but I am likely to be ineligible for immunotherapy as I have an auto-immune disease. I mention that my lower left jaw is now painful. It has cancer in it. Another trip to the radiotherapy department in December. It is just a week this time. The effect of treatment to both upper and lower jaw has allowed me to open my mouth virtually normally so eating is less of an ordeal although I am severely restricted how much as I do not have a stomach as such. Weight loss is an issue in our minds. In January 2018 we bit the bullet and knowing that my oncologist was looking for the next treatment plan we booked a holiday in Tenerife. Immediately after we did this I started to feel unwell for the first time, other than after treatment, for two years. I feel weary and frustrated that I can no longer run. In December 2017 I had a pain in my groin that radiated into my right thigh. On the advice of my physiotherapist I stopped running in late January 2018 to rest the injury. I have not run since as the pain/discomfort has spread down my leg to my foot. One of my coping strategies has been taken away. One piece of good news is that following various scans my leg injury is not related to my cancer. Back to feeling unwell. It was a combination of lethargy, fatigue and being worn down by torso and stomach pains. My oncologist referred me to a palliative doctor who has been most helpful in reducing but not eradicating the pain. The feeling of being unwell affects my concentration and ability to stay “on task”. It raises my level of anxiety and frustrates me. Our holiday was tainted by me not being well at the beginning and end of our time away. However, when we returned there was a letter from the Royal Marsden inviting to attend an appointment to be considered for a trial. After a number of visits, I have joined a trial. The process comes with its own level of anxiety. This was especially so as the one that had been identified for me looks most suitable for those with oesophageal cancer. Still the roller coaster ride continues. After a battery of tests, toing and froing between research centre and pharmaceutical company I was started, then a couple of weeks later suspended, as I had some adverse test results. Whilst we understand the reason for caution it is difficult to immediately manage these disappointments in the mind. In some ways joining a trial feels like a last hope although in reality its better to consider that its targeted approach might be that much better tolerated and give better outcomes. Then there is the feeling of whether you are on the placebo in the back of your mind. These words are just a flavour of the journey that Chrissy and I have been on for two and quarter years and counting. What do we take from all this? Firstly, the constant one step forwards seems to be countered by a one step back (that sometimes feels like more). This is mentally wearing. Secondly, each treatment weakens me physically and this also plays into mental weakening over time. Thirdly, the combination of the two have a negative emotional impact that begins to interfere with relationships with family and potentially friends. Having had a relatively active lifestyle before the original diagnosis there is a frustration that we cannot do as much together of what we enjoy. More recently since feeling unwell combined with my leg injury it has also substantially impacted on simple exercise routines eg going for a decent walk. For the first two years I used to say that I think it is much easier to deal with what was thrown at us by me feeling generally well. That has been evidenced this year. Now opens a new and challenging chapter of dealing with un-wellness as well as the condition and the treatments.” "John died a month after giving this talk. I continue to run because he can’t…" Chrissy If you feel able to support Chrissy in her efforts to prevent other families going through journeys such as this then please visit her Just Giving Page.