Trigger Blog

The Hardest Time

Neil Burton, Neil Bikes Back

During the summer of 2011, I was starting to feel pretty rough. I’d out blacked twice – once walking down the stairs and once in the bathroom – but did the usual bloke thing: took a couple of ibuprofen and hoped for the best. Then one day I went out for a run.

I was used to going three or four times a week, running about six miles each time. That day, however, I felt dizzy. Sweat was pouring off me and I’d only gone about 20 yards! My neighbour, a nurse, saw me and said I was looking grey and should see a doctor. Two days later, I went and got a blood test.

That night, my GP rang and everything became a blur. He told me that my results had come back and I needed to get to hospital ASAP. When he said that cancer was a possibility, I started crying immediately, thinking about what would happen to my one-year-old daughter.

The next morning, I was dropped at Portsmouth QA feeling weak, confused and scared. I remember overhearing the nurses saying “that man in bed four looks terrible” – and I did! I was given a 24-hour blood transfusion and found out the next day that I had oesophageal cancer. By 4.00pm the same day, I knew when my surgery was and when my chemotherapy, scans etc were all due.
My mother travelled down from Birmingham, and I had to tell her that her son had cancer. Imagine having to do that! A friend had to take me home on the Saturday morning because she was a wreck.

As I was recently divorced, my mother basically moved in with me, for which I was thankful. My outlook was poor. My chances were less than 5%, I was faced with a massive surgery, and to compound matters it was looking like the cancer had spread to my stomach; a PET scan had given the hospital serious cause to believe the worst. I was expecting to die, the mental effects of which were brutal and hard to cope with.

I started chemo soon after and it was horrific. The hospital threw it all at me! Twice I was rushed into A&E as my body broke down. In many respects, chemo was the worst part of the whole process, and the decision was made to stop as it had ruined me. My job now was to prepare for the upcoming surgery, which was to take place on January 11th 2012. They removed the tumour along with 50% of my stomach.

When I came round in intensive care, my parents told me I looked rough! I was moved to the high dependency unit the next day and spent nearly two weeks there before I was allowed home. I’m now a chronic-pain patient and the hospital do all they can to help. This hasn’t been so easy though – especially since I’m allergic to morphine! The pain is something that I’ve struggled to deal with to this day.

A few weeks later I had another problem. I couldn’t keep any food down and I was losing weight on a daily basis. It transpired that my stomach had collapsed! I was now faced with another huge operation to rebuild it. The surgeon had never seen anything like it! He told me that if it couldn’t be fixed, I was going to die. That was crushing news for me and my family! Thankfully, my stomach was rebuilt, but I lost a further 10% of it in the process, so it was back to intensive care. I basically lived there!

When I got home, I set back off on the road to recovery. This proved to be long! In July 2012, my rib cage collapsed due to chemo and surgery damaging the bones. My ribs had to be reconstructed, and two of them had to be replaced with plastic ones!

In December 2012 I felt a pain in my abdomen. By now, I knew my body well, and this was a worrying pain. I made an appointment and was admitted immediately. I had a CT scan the following day that revealed that my colon had come loose, herniated through my stomach, and was basically wrapping itself around my heart! I had yet another big operation to put that right!
I was lucky to have a good support team through all of this: Mr Mercer (a god in my eyes!), Jane Jones, Lorraine Sutton, and Melanie from Harbour Support. This team makes me feel like I’m capable of beating anything! The counselling I’ve received is definitely as important to me as the care I’ve had from the NHS. In fact, I think that counselling should be part of the care plan for all cancer patients.

I was told right at the start by Jane that cancer is an affliction on the whole family. I thought that crazy, but it isn’t. Telling my parents was an especially brutal task. I found out later that my dad was thinking about where I should be buried. I don’t know if he knows I know that. I remember it breaking my mom’s heart when I lamented that I’d never get to take Daisy to school. That’s the thing. Throughout the process, people have said I’m brave, but I didn’t really have a choice. I had my amazing daughter to live for! I wouldn’t be able to cope without my family!

I completed a 300k bike ride to do two main things:
1. I wanted my parents to know I’m getting there – I did get to take my daughter to school! She’s now six, and my little rock’n’roll star. We are crazy close!
2. I wanted to raise awareness of what counselling can do, especially for men, as by nature I think men find it hard to express their feelings. I guarantee that if men who’ve had (or have) cancer could speak to someone like Melanie, they would be better able to deal with the huge range of emotions that cancer creates, and consequently help those around them.

Right now, I’m in a good place. My daughter is perfect, I have an absolutely amazing girlfriend, and my parents are happy.
These past two years have thrown up more problems, by-products of the original cancer surgery, and the biggest issue is how my mental state has been affected by my illnesses. I didn’t speak up at first for fear of being emotionally exposed, but now I’m a firm believer in doing so. You have to be strong enough to put your hands up and admit that you need help dealing with these things.

I struggle most days, either with pain relief or my feelings and where my life is going. I’m such a better person now than the one I was before. I’m an ex-cancer patient and a current sufferer of chronic pain, and I try my best to cope with the mental effects of my illness. It’s affected by coming off my pain medication, and that’s now the hardest thing to cope with as my pain receptors have increased substantially.

I have a process: don’t moan about the things you can’t control. If it’s raining, buy an umbrella! I’ve also got better at allowing myself to think about the future, to plan days out with my daughter, Daisy, and my partner, Shona. This makes me feel more normal. I’m due to have more surgeries, and know I will need my coping mechanisms, but I don’t beat myself up if I have a bad day; I get over it and know that tomorrow will be better. My mental health is paramount to me and my future happiness.

Neil Burton. Neil Burton, Neil Bikes Back

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