Inspiring Stories from a Pancreatic Survivor

Nigel – Just after being diagnosed with Pancreatic Cancer at age 72

The universe has been up to its old tricks again. A woman named Julie left a comment on my Strava a few days ago, saying, “Hi Dan. My Dad had the same as you. Would it help you to talk to him? He was really into his fitness when he got diagnosed. It helped massively with his treatment. He would be happy to help you x”. I was certainly interested but had no idea what to expect. Nothing could have prepared me for my conversation with Nigel and his fascinating story.

Nigel was diagnosed with pancreatic cancer at 72. I believe 72 is the average age of someone diagnosed with the disease, despite me previously claiming it was 76. When I spoke to Ali Stunt, CEO of Pancreatic Cancer Action, she said it was about 72. It was a damning diagnosis at that age, and Nigel’s was no different. He was told it was inoperable and given 8 months to live. He didn’t accept this, though and insisted on treatment. The doctors offered him Folfirinox, the same treatment that I am on. It sounds like they had to deliver it slightly differently to me. Nigel spent 12 hours at the hospital on his treatment days; I assume this is to give his body more time to process the drugs.

After 6 months of chemotherapy, apparently of which Nigel sailed through (his daughter Julie gave a slightly different account, but I’m not picking sides), the doctors were utterly floored by the chemotherapy’s effects on the tumour. Apparently, a 30% reduction in size would be good, but he had achieved closer to 54%. They couldn’t believe it. All of a sudden, Nigel was being considered for surgery. Julie told me they wanted to see how fit his body was to understand if it would withstand surgery. To do this, they asked him to attend a session where he would be asked to run on a treadmill and measure his heart rate. Nigel has kept himself fit his whole life, and it is evident from his pictures. Julie told me that he showed up in his complete workout kit, expecting an intense workout session. He was ready for anything, never mind a measly surgery. Fast-forward to 2022, Nigel is approaching his 3-year clear scan at The Christie. Even better, he has the same specialist as I do.

In spite of the fact that this story is incredible, inspiring and frankly, insane, that isn’t even the most remarkable thing about Nigel. The man is a national treasure. After meeting him, I wasn’t the slightest bit surprised that cancer didn’t manage to better him. He is the most positive person I have ever spoken to, and the effect it had on me was priceless. It took a 40-minute conversation on the phone, and I felt like a new person. “If someone tells you that you have 8 months to live, you need to enjoy your time even more. Why would you spend that time being miserable when it won’t change anything anyway?” It is rhetoric that I preach on this blog, but seeing someone living and breathing it to such an extent is so refreshing.

I am so grateful that Nigel’s daughter Julie reached out to me and put me in contact with him. The story is so unlikely for pancreatic cancer that you’d assume it was fictional, but it isn’t. I am sure there is so much more to it than I am aware of, and it would make a superb blog. I get the impression that Nigel would see that as a waste of time, though. “Some people spend all their time feeling miserable in support groups after being diagnosed. I never got that.” He made me laugh a lot, even when I didn’t necessarily agree with him, although I wasn’t sure when to take him entirely seriously. His sentences produce a smile, each one laced with flippancy and confidence towards cancer, life and everything in between.

Meeting Nigel made me think a lot about my approach to fighting cancer. I am at a different stage to him, and I cannot see into the future to see how things end up for me. But it made me realise that I don’t need to know the future to understand the best approach to fighting cancer. It is not about fighting the cancer at all; it’s about grasping onto the things that make you feel happy and continuing on with life as usual to the best of your ability. Right now, the significant limitations on me are due to the chemotherapy drugs and their effect on my body. I am running again, though, I’m managing to view wedding venues with my fiance, and I am managing to get enough effort together to bake and cook plenty of food. Alongside all of this, I’ve started a blog that I am really enjoying writing, something I would not have done if not for being diagnosed.

It can be an interesting exercise to think about what you have been spending mental effort on recently. What has bothered you the most in the past 7 days? How quickly did you resolve the worry, or is it continuing? Lately, there have been quite a few things on my mind, cancer and non-cancer. The surgery is a constant worry for me – whether I will get to a point that they offer it to me, how well I will manage to recover from it and whether the surgeon will be able to remove enough of the pancreas to stop it coming back. For the most part, I realise that these things are natural worries, but I also know that worrying about them offers minimal benefit to me. Worrying about it won’t make it better, change the outcome, or influence my body towards any different conclusion. Worrying about it at night and letting fear cripple my existence could actually make those thoughts more likely to come true. Stress is deadly on the body and mind, and my body is under a lot of physical stress right now anyway; it doesn’t enjoy having the cancer either based on my heart rate during my runs.

So my pledge to myself is to prioritise enjoying myself and being happy. Nigel is living his life without fear, and I can’t imagine him expending any mental effort, energy or stress on things he doesn’t see value in. I hope to meet him in person eventually as I would love to write more about him. I think anyone could learn a lot from him. Life is too short, and when you have pancreatic cancer at 28, life really can feel short. No better time to enjoy it than now.

So today, I went out and ran my 4 miles (I did 4.2 actually), I went to the dentist, and tonight I am going to view a wedding venue. The dentist was good fun – there’s nothing wrong with my teeth. Glad to know there’s an area of my body living carefree in the cancer period. Regarding the wedding venue, we’re curious to see if the ‘C’ card really can save you money on things – we’re hoping so. I’ll have to update on that in another blog titled ‘The Benefits of Cancer’… it’s likely going to be a short post.

The Road to Diagnosis: Part 1

On November 22nd I happened to be watching BBC news as a special on Pancreatic Cancer was featured. It was an uncomfortable watch for both me and my family, but we persevered through and I learnt a lot of unpleasant information. Pancreatic Cancer is extremely deadly as it is difficult to detect, and is often found too late to give the individual a chance at fighting it. This is primarily because the cancer is mostly asymptomatic. I already knew that I was lucky to have been diagnosed, but the various examples I heard in this feature demonstrated just how lucky I am, and how much I have to be grateful for. It lead me to ponder over my road to diagnosis and view it in a totally different way. 

Before, I had felt let down by many of the medical professionals who I had seen about my issues. The feature highlighted to me that in fact, I was incredibly lucky. The average age of a person being diagnosed with pancreatic cancer is 78, they are typically diagnosed when the cancer has spread far beyond the pancreas and treatment is at best difficult, if not completely futile. It is also more common in people who have had a chronic drinking problem. Therefore, my diagnosis is extremely unique: I am 28 years old, I run marathons regularly and, despite my best efforts throughout my teenage and university years, I have never had a chronic drinking problem. Further to this, my cancer had not spread from the pancreas despite pancreatic cancer being an extremely aggressive cancer. It was described to me as an “ugly” cancer by a few medical professionals: a true lesson in euphemistic language.

Ultimately, this change in perspective has overhauled my ability to be positive in the face of the tragic news, and I truly feel happier than ever in spite of the cancer. I hope that you enjoy sharing the journey with me, and that you revel in the final message: that positivity is a choice, and an extremely empowering one to make. It is attainable in the most challenging situations, even where it may take more time and mental effort to achieve and sustain.

My story began in September 2020. I noticed that my abdomen felt tight when I lay down to go to sleep at night, and remained so when I woke up in the morning. The symptoms seemed to subside when I got up and moved around again and I assumed that the issue was linked to an eating allergy that suddenly came on. Still, after 2 months of this discomfort, I saw a specialist under my private health insurance – a benefit I had with my previous job. He suspected that I was constipated. I did not struggle to go to the toilet each day, but he explained that constipation is about more than that and may be due to food moving slowly through my bowels. I proceeded, unconvinced.

I had an ultrasound of my abdominal region which did not uncover anything worrying. I had another follow up with the specialist to discuss the next steps. He turned up 40 minutes late to the appointment and seemed extremely disengaged, making no eye contact with me and staring down at his desk whilst I spoke. Safe to say, I felt like his interest in my issue was similar to that of a neighbours car alarm going off at 3am – he knows that he should care as it may indicate something bad is taking place, but it’s also not entirely his problem (despite being paid a large sum of money to make it his problem). 

I left feeling totally deflated. I was already working to a diagnosis I was not convinced by and now felt that the specialist had little interest in seeing past his theory. Of course, some of this insecurity was because I thought there was nothing serious wrong with me and that I was also wasting both of our time; it is easy to forget that now I know that I do have pancreatic cancer. He told me that the next step in the process was a colonoscopy. I picked up the preparation kit for the procedure and left the hospital, certain that I would not be seeing that man ever again. I had no interest in doing the colonoscopy and was convinced that this was an issue I’d have to sort out by myself. The discomfort continued over the following months, with me trying various diet changes and eating behaviours to control it. None worked, but the issue did not seem to get any worse.

In around May 2021, I decided to have another go with my local GP. She was much more engaging than the private specialist but was far more limited in what she could do. We agreed that the starting point was various blood tests that had not yet been done and take it from there. The problem with this process is that the results of blood tests are sent via text message. This text message was an automated message to the effect of “Your doctor has reviewed your blood tests. No further action required”. It is a closed loop of communication.  I may as well have received a text saying “There is still nothing wrong with you. Stop being a hypochondriac”. It’s certainly how it felt at the time. To move the process along, the onus is placed on the patient to ring the surgery again at 8am, wait in a phone queue, explain the ongoing issue to the receptionist and then wait for the phone appointment with the GP (assuming they deem your issue requires a conversation or, god forbid, a face to face appointment). Naturally, I gave up again, assuming any more tests would lead me nowhere.

October 2021 is when the symptoms suddenly escalated to an undeniable level of severity. I had run a 35 mile ultra-marathon on the Saturday and was enjoying a well earned week off running. On the Tuesday after the ultra-marathon I decided to go to the gym and do some abdominal exercises, before heading home to have dinner with my girlfriend and a good friend who was visiting. 30 minutes after eating a meal of tofu and noodles, I got extreme pain in my abdomen. I was keeled over on the sofa, struggling to breathe and forcing back tears. The episode lasted about 15 minutes, but a dull pain remained in my abdomen that I never really got rid of again until my first surgery. 

These episodes of severe abdominal pain continued to happen throughout the week, regularly resulting in me crying and feeling utterly helpless. I rang 111 on 3 separate occasions and each time was informed that I need to head straight to a centre, but needed a referral from a specialist beforehand who would promptly call me back. The first time I called 111 was at 21:30 on the Tuesday. I woke up to a missed call at 6:00am on Wednesday. I then looked up the definition of the word “promptly” just to confirm that it hadn’t changed. It was well over the hour I was promised it would take. Luckily (for my own sanity), I was asleep. It was yet another chip away at my optimism, and my confidence that the issue would be resolved continued to wane. I am not trying to blame any individuals here, but there is clearly something wrong with the process. Whether it is another example of the health service being pushed too far with lower funding, or is the result of the coronavirus epidemic raising demand on services, I am not sure. All I know is that I was told my issue was critical every time I rang, but I never received the follow up that I was told was required to go to a specialist centre.

The following Monday I had been on my bed struggling to breathe for 3 hours. My dad called me to discuss something trivial, and quickly became animated hearing my condition. He convinced me to go to A&E. I finally saw the severity of the pain as untenable and needed to act. I should point out that my dad has had a problem with his back for the duration of my entire life and has never even considered going to see a professional about resolving it. He used to lay on the lounge floor in severe pain in the evening, utterly convinced that his back was created broken and that nothing could be done to change that.

I arrived at Lewisham A&E and was promptly asked to wait in the Covid safe waiting room – some benches outside the hospital under a tent. After 30 minutes of waiting, the security guard called me in to talk to the receptionist. Safe to say, she wasn’t convinced this was serious based on my history of “trivial” abdominal issues. I heeded her warning that the GP would only prescribe me painkillers, and raised her a counter-suggestion: that the GP might just acknowledge that ANY pain which results in you struggling to breathe may need more than painkillers. We agreed to disagree, and I told her I would take my chances and wait.

After 3 hours I approached the nurse at the window and stated that I was leaving and to take me off the list. The receptionists words had resonated with me, and I was feeling worse dealing with pain in a not-so-pretty hospital waiting room. At least at home I can struggle to breathe in a comfortable bed, rather than try to suppress any pain I am feeling, in fear that the other ill strangers might throw me a concerned glance, or think I was behaving weirdly. Oh the social pressure I was under. The nurse behind the desk was extremely lovely. She told me I was next in the queue and that I would be seen shortly. I was encouraged to wait and told my problem needs investigating. It really saddens me knowing that this nurse may not be aware of how valuable her words were that day; she may be the first true intervention in this story that could lead to a 28 year old man surviving pancreatic cancer. Her actions epitomise the responsibility we all bear for each other in this world, and how “benign” things such as our attitude and choice of words can influence another’s path in the most critical of moments.

A modest 40 minute wait more and I was called into the GP’s office. She asked me for a history of the issue. Without being prompted, she told me that my issue was very concerning, and that others may struggle to uncouple them from the previous issues experienced. She inspected me and, importantly, requested blood and urine samples. The urine sample quickly showed no issues. “Here we go again” I thought… I went into a nurses office to do the blood test; something that always turns me into a babbling child. The first time I had a blood test at my local GP, I was woken up on some grass next to the surgery by an old man. He told me he had watched me flop to the ground like a sack of potatoes, and said I was white as a ghost. I stumbled the 200m home with him helping me and then my mum picked me up from the doorstep and immediately threw some sugary tea down my throat. Luckily, I haven’t ever passed out from one again, but I have the same nervous reaction every time. And I have had A LOT of blood tests at this point.

Before returning to the waiting room, the GP gave me some codeine and told me the results will take approximately 30 minutes. I’d never taken codeine before, and I hadn’t eaten anything since midday… it was now 21:00. Safe to say, the next 45 minutes in that waiting room floated by. I observed strangers, flirted with the vending machines and wondered what special drug might eventually cure my obnoxious abdomen. Suddenly my eyes noticed the GP running across the room, and was surprised when her final destination was right in front of my very chair. ”You need to come into my office”. Finally – the magical Abdominal Pain Purifier 3000 Prescription Tablet Set was going to be issued to me and I could be on my merry way, abdominal issues resolved.

She said something along the lines of “Your liver functioning is very poor. You have a dangerously high level of an enzyme in your blood that should not be there. They may operate on you tonight – you need to be inspected by the specialist staff immediately”.

Well fuck, that didn’t go to plan…