Beating bowel cancer together

Nick Summerfield, Kent

I was diagnosed with bowel cancer at the age of 33 in January 2021.

The two years before I was diagnosed with cancer, I had a very healthy lifestyle. I would train with my personal trainer three times a week, eat very healthily and drink minimal alcohol. In December 2020, like most people, I enjoyed all the naughty foods and didn't really worry about eating 'clean'. I definitely had my fair share of Quality Streets, beers and carbohydrates! I would say that I am pretty much like clockwork with going to the toilet but I started noticing blood when I had a 'number two'. I didn't really think much of it and just put it down to eating lots of 'naughty' food compared to my normal diet. However, going into January 2021 the blood didn't stop and I started noticing my bowel habits were changing as well. I was noticing more loose stools and also, I sometimes felt constipated. My mum encouraged me to book an appointment with my GP, which I did, and I got an appointment the same day.

I went to the GP thinking I probably had something common like a pile and hopefully some cream or medication would sort out the issue. When I saw the GP and explained my issues, she did an inspection and had a similar view that it was nothing serious. However, I explained that my father had bowel cancer 10 years ago. Although the GP didn't think I had anything like cancer, given my family history, thankfully, she requested that I had a colonoscopy ASAP just to rule anything like cancer out of the equation. I am so grateful to my GP requesting the colonoscopy as that really was the start of my cancer journey, but I didn't know that yet.

A week or so later I went to my local hospital to have the colonoscopy. It was actually quite a painful experience and what I hadn't appreciated is that you can see the TV screen showing the camera inside you. I knew something wasn't quite right from the inspection and shortly after I had bloods taken, I had a conversation with the doctor and nurse who said that this looks like cancer.

A million things rushed through my head at the same time and thankfully my mum was waiting in the reception area of the hospital to take me home. I couldn't really believe what I had been told, how could I have cancer at 33, someone who has a really healthy lifestyle? I also couldn't really get out of my head how my family and friends were going to deal with this, also what would work say, plus what actually is my life now going to be like? There were so many unknowns that I just had to take a step back and take each day as it comes.

Shortly after the colonoscopy I was called by my cancer nurse who is just amazing and has been there for me every step of the way. She said I needed to have a CT scan, MRI and a sigmoidoscopy. After these three procedures it was confirmed that I had cancer and sadly a T4 tumour, which means the tumour has broken through my bowel wall and was very close to attaching itself to my bladder. I also had three or four swollen lymph nodes which the doctors were concerned the cancer had spread to.

I was classed as a critical cancer patient and had support from my local NHS hospital in Kent but also the NHS hospital in London called St Marks who had a specialist bowel unit. Having two hospitals and therefore two teams looking after me I knew I was in great hands and I would do what they advise. After speaking to both hospitals and chatting to my oncologist the plan was to try and reduce the size of the tumour to then make the operation a bit easier.

The decision was to have daily radiotherapy (Monday – Friday) plus daily oral chemotherapy (Monday – Friday) for six weeks. We talked through all the potential side effects all of which sounded pretty awful, but I knew this was the best option and was keen to start ASAP. Thankfully the treatment plan was a huge success and my tumour shrunk from a T4 to a T3!

It really made all the struggle with the side effects worthwhile and I knew we could move onto the next challenge, the operation. Due to COVID there was a bit of a waiting list to have the operation, which was approximately two to four months. Having being told that I will need a temporary stoma bag to allow my body to heal from the operation and potentially further chemotherapy, I was keen to have the operation done ASAP. Thankfully, I am very lucky to have private healthcare so I took the decision to have the operation done privately purely to speed up the process.

After a few consultations with my surgeon, I was ready for the operation which I am pleased to say went really well. I was in hospital for nine days as I had a few issues with my blood and pancreas but that is all fine now. The biggest challenge post-surgery was getting used to my temporary stoma bag which if I am honest I really didn't like but I am used to it now.

There were so many unknowns that I just had to take a step back and take each day as it comes.

Although the doctors and nurses prepared me really well for the operation, it really was way more hardcore than I thought it would be. I woke up with lots of scars, tubes and a machine attached to all different parts of my body, plus the stoma bag! I spent the first day and night in the intensive care unit before moving to the ward to continue my recovery. Thankfully the COVID rules had just changed in the hospital which meant I could have one regular visitor.

I was definitely feeling very emotional after surgery and during my time in hospital, mainly because I kept on thinking I cannot believe everything I have had to go through this year and the cancer journey was not over yet. Having mum coming to visit me was great, it doesn't matter how old you are, having a hug from your mum really does make everything ok. I spent time in hospital understanding my stoma bag, how to clean and protect my skin plus cutting the bag to make sure it was the correct size. Which does sound really simple but when you have had major surgery and you cannot go to the toilet properly you do feel like a different person. Mentally and emotionally it really affected me and it has taken me a few months to get my head round it. I'm around seven months post-surgery and sadly I am back on chemotherapy, which annoyingly means I still have the stoma bag. The histology report came back and confirmed that even though my dad had bowel cancer it's not genetic and it was just bad luck on my side. The report also said that I had a vascular invasion which means cancer cells were in my blood vessels.

Thankfully I have now finished round eight of chemotherapy and I have been given the green light that I can have my stoma reversal operation which will happen at the end of February 2022. Annoyingly, the recent scans showed a nodule in my lung which will need further inspection and scans over the coming months but for the moment I am mentally and physically gearing up for operation number two.

If everything goes to plan after my reversal operation, I will then then go under surveillance for five years. This means regular scans to ensure no tumours have appeared anywhere in my body. I was diagnosed with cancer at 33, I am now 34, and although I still have a long way to go it does feel like there is a bit of light at the end of the tunnel. I am getting to grips with my stoma bag (now called Zippy, my new best mate). The biggest hurdle mentally is knowing what my life will be like in the future, there are so many questions that I cannot answer and therefore I don't feel in control. What will my life be like? Will the chemotherapy work? Will I need a stoma bag for longer? What impact will this have on me trying to date when I am 'better'? Will my energy levels be the same? Will I be able to move back to London? My parents raised me with the attitude to never give up and that is certainly my attitude in beating cancer. I have good days and bad days but I just need to take each day as it comes.

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