Lee Ryan, Great Harwood
In early 2019 I was seeing blood in my poo but it was never fresh blood, but within the stool.
At first I wasn’t too concerned and waited to see how often it was occurring but then as time went on I knew something wasn’t right, although I always put it down to internal piles. I was a keen gym goer and loved doing CrossFit four times a week, but my energy levels were just dropping until eventually I just felt like I was too tired to go. I put it down to having young children and a lack of sleep.
Eventually I went to the doctor and voiced my concerns and was told to come back with a sample to send off for testing. Unfortunately I didn’t do this straight away and had to go back for another sample kit a month or so later.
Once I had sent it off I was told that I had high levels of calprotectin and was referred to a specialist. They discussed possibilities of Crohn’s disease or colitis, I even mentioned cancer but was told I was too young.
I was referred for a colonoscopy but I had to wait a few months, but eventually on the 9 August 2019 I had the appointment. I was then sent home and told to wait for the results. A couple of weeks passed and I heard nothing, then another week so I rung up and spoke to the receptionist. She told me it can take a couple of weeks for the results but if it was anything serious I would’ve been contacted within 10 days.
That eased my mind somewhat but I still wanted to know what was wrong with me. After around eight weeks I still hadn’t heard anything so I called again. I was told that the consultant had retired and was waiting for someone to look at the results, to which I obviously was not happy and asked her to please chase them up.
I then received a letter for another colonoscopy for the 15 October 2019. I was never told why I needed another one. On the day I arrived with my wife and a nurse took us into a room. He asked if I knew why I was there, to which I replied yes for another colonoscopy. He said yes but do you know why? Well we didn’t so said no can you please tell us. He said I’m sorry I can’t but I will get the doctor. The doctor came and explained that from the last colonoscopy there was some suspicious cells and inflammation and they want to check it today. So once I had it done and recovered, we waited for the doctor. Again we were taken into a room with the doctor and another nurse, which was when he explained that there is a mass in my large intestine and that it looks like cancer.
I’m 36, married with a three year old little girl and a one year old boy – this was the biggest shock of my life.
Surprisingly I was quite calm at the time. It’s like I knew and I just felt a wave of calmness come over me – like god was with me. My wife broke down and that just made it feel very real and set me off. The doctors left and the nurse comforted us.
Driving home we were just quiet we couldn’t quite believe what we had heard. Breaking the news to family and friends was so difficult. I felt obliged to comfort them and tell them everything was going to be fine.
After many scans and appointments I was diagnosed with bowel cancer and on the 15 November I was booked in for colorectal surgery. It went well and the surgeon removed the tumour along with approximately 10 inches of my large intestine. He did say it looked quite angry when he removed it and expected I would need chemotherapy. The results came back from the lab and was diagnosed with T4-N1-M0 tumour (stage 3) as it had spread to three lymph nodes, which meant I would need chemotherapy.
My recovery from the operation went well, I had lost some weight in hospital but soon put it back on and gained my strength back. Soon after I was then appointed my oncologist, and discussed the chemotherapy options.
In January 2020, I started my first of 12 rounds of Foxfol7 chemotherapy and boy did it hit me hard. I was to have one round every two weeks.
I’m a very upbeat person and always tackled this news head on with an enormous amount of positivity, but the chemotherapy just made me feel horrendous, got me very down and I struggled to be around anyone including my wife and children.
The first round lasted around eight days and I felt normal again, but few days later I was back on it. The side effects were tough as I got a lot of pains in my chest. At first it was put down to heart burn but by the time I had my fourth round I was clutching my chest in the middle of the night. I was in a very small percentage of people that get angina from the drugs so I had to stop treatment as the risk to my heart outweighed the benefit of the chemo.
I had regular scans and blood tests every three months in the first year to check for any changes. It was at this point I thought I could get my life back on track and start to get back to how things were. However Coronavirus was at its peak, lockdown had been enforced and I was still vulnerable. It was around April time and I was hoping to get back to work as I have my own business and haven’t worked since October 2019. Unfortunately this wasn’t possible yet, thankfully I have an amazing business partner and staff that were taking care of things.
I even started to do some exercise and took part in a 24 hour nonstop row (on rowing machine) for charity. I felt like this was the start of making a comeback.
In July I had a CT scan and an MRI scan. It showed some very small spots in my abdomen that were suspicious so I needed a PET scan. My worst fears came true and was told that two nodules were growing in my abdomen and that the best option was to start chemotherapy again, although a different combination, to help stop them growing, with possible surgery required too. This is when the Christie Hospital were informed and we waited for their recommendations on surgery.
In the meantime on the 3 August 2020 I went my first round of chemotherapy and this time it was Irinotecan. I was admitted in case of any complications, and when they hooked me up I thought here we go again. I had just finished the full dose when I said to the nurse I didn’t feel well. Sweat was literally pouring out of me and I felt light headed. The nurse explained it was normal and gave me an injection to help with the side effects. But a few minutes after I said to her ‘I’m going’ then I passed out.
Turns out I had a massive anaphylactic shock, god bless my nurse she acted promptly to save my life and I thank her to this day after giving her shock of her life too.
As I had taken the full dose, it wasn’t so long after that my hair started to fall out. I thought about shaving it off, and my brother in law Joel wanted to do it too to support me. He had a brilliant idea of donating his to charity as he’d been growing it for three years.
My lovely barber said she would do it for free and asked if we were raising any money for charity. I hadn’t considered it as I was just shaving my hair as a necessity but for Joel it was a big deal. As a last minute decision (the day before) I put a donate button on my Facebook asking for £300 and within 24 hours we had raise over £2,000 for Bowel Cancer UK, it was incredible. By the end it raised nearly £3,000. It felt amazing and in these crazy times we are currently living in raising money for charity is essential.
It was clear that I was allergic to this chemo, I wasn’t doing so well. Thankfully the Christie Hospital had replied and an appointment was made to see a surgeon. He explained that these nodules were little cancer cells from the first operation that had gone rogue and started to grow. One nodule was around 50mm and the other 30mm growing on the lining of the abdomen. He explained in detail and said the chemotherapy probably wouldn’t have helped and that I would need HIPEC surgery for what was now called peritoneal cancer. I just couldn’t believe what was happening. I went from thinking I was going to be clear to move on to now needing this 10 hour operation to save my life.
I had CRS & HIPEC on Saturday 26 September at the Christie Hospital. Again I have been positive and always kept joking and smiling throughout, even the day of the operation I would take a silly selfie to send to the wife. But this time it really hit me hard, I don’t think I really understood how big this operation was.
I remember waking up, hooked up to machines with so many tubes coming out of me, I was bloated and didn’t recognise myself. It was explained to me before the operation the risks and possible outcomes, but couldn’t be prepared for the outcome. I had a cut from just below my ribs straight down the middle all the way down as far as you could go. I also had an ileostomy. The surgeon explained that the nodules (tumours) had grown onto my large intestine this time so he had to take another 10 inches therefore needed the intestine to recover hence the ileostomy.
Being in hospital on my own with no visitors was soul destroying. I became very withdrawn, I didn’t want to talk to anyone or even text them. After a week it started to ease and I just missed my wife and two children so much, it was draining me. I had no appetite and the pain was getting me down. I was at an all-time low.
It’s hard when you’re in that moment and it’s only when you come out the other side you can say I did it and I can do this! It really helped me to pray every day.
When I left the hospital to go home I was so weak. I managed to walk outside to get in the car and I just broke down in tears, it was just the relief of getting out and the realisation of the scale of what I’d been through. Once home my incredible wife looked after me and I got stronger each day.
Five weeks on from surgery and I’m now home recovering well, it’s a slow process and I take each day as it comes. I’m getting used to my ileostomy but have been informed it’s just temporary. Also I’ve been diagnosed with the dreaded Covid but dealing with that well so far.
I’m sharing my story as I want to raise awareness and encourage people not to be embarrassed to go to their GP with any symptoms, the doctors have seen it all. The sooner you go the earlier you catch it and could save your life. In my case it would have saved me from having extra chemo and operations if I’d just caught it that tiny bit sooner.
Luckily my wife is very strong and has a lot of faith – that’s what kept her and myself going. And the kids have just been amazing they are so adaptable.
But we’re leading change
Never Too Young is leading change for younger bowel cancer patients. Every year 2,500 younger people are diagnosed with bowel cancer in the UK. Our research has shown that younger bowel cancer patients have a very different experience of diagnosis, treatment and care.
What are we calling for?
- Improved clinical guidance and practice on bowel cancer in younger people
- Improved identification of people with genetic conditions and access to surveillance screening
- Improved information for younger people on bowel cancer symptoms.