Beating bowel cancer together

Rebecca Clarke, Sheffield

This story has been archived. Read other real life stories here.

I was diagnosed with bowel cancer in January 2020 aged 36.

In September 2019, a few months after returning to work after maternity leave, I started to feel extremely tired and I noticed a change in my bowel habit – I needed to go to the toilet more often and felt like I couldn't hold it sometimes. I was also starting to feel dizzy when I got up too fast and I'd lost a bit of weight. I just put it down to the stresses of going back to work and having two young children.

However, after a couple of months the symptoms hadn't gone away, so in November I booked an appointment at the GP. I nearly didn't go because on the day of my appointment, my little girl was really poorly so I called my surgery and asked if she could take my appointment because I thought she needed it more. How wrong I was! Luckily, the receptionist said she could get us both in. The GP was very helpful and listened to my concerns, and offered to do a stool sample and take bloods. He said he was also going to test for celiac disease too.

A few days later the GP called to say that I was severely anaemic and my haemoglobin was very low. He needed me to go to the pharmacy straightaway for iron tablets, he explained this is what had been causing the tiredness and dizziness. This was a shock to me, as up until this point I'd never had anything wrong with me. A few days later I received another call from the GP with my stool sample results, he said the results were grossly abnormal and was referring me urgently to see a specialist at the local hospital. He thought it could be colitis or inflammatory bowel disease – cancer was never mentioned.

I went to the GP to pick up my referral letter to see a gastroenterologist, I immediately logged onto the NHS booking website in the car. The nearest appointment was 92 days away! I got the impression it was more urgent than that. I went straight back into the GP surgery and voiced my concerns to the receptionist. She said that the GP obviously didn't think I had cancer, otherwise I would have been referred more quickly. She said the only thing she could suggest was to go on the NHS booking website and refresh the bookings page to find a cancellation. I did this for two weeks straight and eventually managed to get an appointment for a few weeks later.

At the appointment the gastroenterologist asked lots of questions and examined me, she said she didn't think it was anything sinister and referred me routinely to for a colonoscopy as a precaution. Because I was referred routinely, I had to wait another month for this.

On the 20 January 2020, I had the colonoscopy. It was extremely painful, one of the nurses held my hand and talked to me the whole way through. I had a lot of gas and air and wasn't really with it, but I do remember hearing the endoscopist asking for the consultant to take a look at the screen as the tumour was bleeding on contact with the scope. I looked at the monitor and it was an absolute mess. That's something I will never get out of my mind.

I went on my own to the hospital as I genuinely didn't believe it was going to be anything serious, nor did I have any sedation. I was in the waiting room for a long time. A lot of people were coming and going. Eventually they called me in, the endoscopist explained what they had found and showed me pictures of the tumour. I could tell by the looks on everyone's faces that it was bad.

They couldn't confirm whether it was cancerous, as they had to wait for the biopsy results but the colorectal nurse specialist said I should prepare for the worst. They gave me a piece of paper with the words cancer on it. I folded it up in my pocket and I didn't show anyone.

At that point I was trying my best to be positive, they didn't say it was definitely cancer. When I went to pick up my two children from my parents' house, I didn't mention anything to them – even when my dad said I looked pale.

A few days later I had a CT scan and I was still thinking that it may not be cancer. I then received a letter confirming an appointment at the hospital. It didn't say who I was going to see, just the ward number. When I got to my appointment I asked who I was going to see. I looked him up and saw he specialised in colorectal cancer surgery and I knew straight away I had cancer.

I took my husband with me to my appointment and for the first five minutes he was making small talk, asking about the children, and then he broke the news to us that I had bowel cancer and it had spread to my lymph nodes and surrounding fatty tissue. He also said I had shadows on my lungs, which may or may not be cancer and they would need to keep an eye on it.

I just cried and cried to my husband and said I didn't want to die and my husband cried too. The surgeon explained that they needed to wait for the results of the biopsy before the treatment plan was made. They needed to see if the cancer was stable or not, as this would determine whether they would do surgery or chemotherapy first. After we'd been given the news, we went to my mum and dad's to tell them. I'll never forget that day, I could barely say the word cancer to them. Everything else was just a blur.

After this I had another blood test, my iron and haemoglobin were still extremely low so I had to have an iron infusion. This had been caused by blood loss in my poo. The blood loss had been like a 'leaky tap' as my GP referred to it, small amounts over a long period of time.

It took three weeks for the results of my biopsy to come back, which were the longest three weeks of my whole life! I felt anxious and on edge all the time. When I got the results, they told me it was a stable disease and that I would be referred to an oncologist to start chemotherapy.

Whilst this was all happening I was put in touch with a GP who was a family friend, she was really helpful and supportive. She recommended that I ask for a second opinion from The Christie in Manchester, which is a cancer hospital. When I met the oncologist she was so kind and helpful. She gave me a treatment plan: two rounds of chemotherapy, followed by surgery and another two rounds of chemotherapy. I asked about the second opinion and she was happy to do the request for me, which I was really grateful for. It took a bit of time for the request to be processed, so I decided to start treatment at my local hospital the following week.

The first round of chemo was awful, they didn't offer a picc line or a port beforehand so I had it through a cannula into my hand. I wouldn't recommend this as I could barely move my hand and arm for a week after – it was so sore. I had the usual side effects of oxaliplatin, I couldn't eat, drink or touch anything cold. I couldn't breathe cold air in. It was extremely tough emotionally, which I put down to the steroids I was given. I would feel really bad for a few days and then, like a light switch, I would feel fine again. After the infusion on the first day, I had to take chemotherapy tablets called capecitabine for two weeks and then I had a week off.

After what I experienced during my first round of chemotherapy, I decided to have a picc line inserted. The second round was so much easier, my hand didn't hurt and the side effects weren't as bad as before. During this time I'd had an appointment with an oncologist at The Christie, he said the treatment plan given by my local oncologist was what he would have suggested. However, he asked me if I wanted him to write to a surgeon at the hospital about having my surgery there, which I agreed to. My case was then accepted by that surgeon.

On 23 March the country went into lockdown. There were reports of cancer patients having their surgery and treatment cancelled. I was so stressed and I was sure I wouldn't get the surgery. A few days later The Christie called and said they wanted to do the surgery the following week, I was so happy and relieved! My surgery was booked in for 1 April, just a week after we went into lockdown. I was so nervous when I went down for surgery, when I got into the operating theatre I had a heart rate monitor put on whilst they tried to do an epidural. The anaesthetist told me I needed to calm down as my pulse was racing and the next thing I knew I had fainted... I don't remember anything more until I woke up.

I couldn't take anyone with me and I wasn't allowed any visitors. It was horrible being in hospital on my own and waking up in the critical care unit by myself, but I did make some lifelong friends with the girls on the ward. We're still in touch now.

During the surgery they removed the left side of my large bowel and 19 lymph nodes. 16 of them were cancerous.

Six weeks after my surgery I started chemotherapy again. Initially, I had two additional rounds of chemotherapy. My oncologist did say that having four rounds of chemotherapy had around the same result as eight. I still opted for eight, I wanted to do everything I could to get rid of the cancer. No matter how small the advantage.

Six months of chemotherapy is tough as the side effects of the oxaliplatin accumulate. During cycle five they had to stop that particular drug as the peripheral neuropathy was getting bad. To this day, it hurts my feet to walk in the morning when I first get up and the side of my left foot feels numb. The last three cycles of capecitabine only were manageable. I didn't really feel like I was on chemotherapy, apart from the fatigue.

During the chemotherapy I'd been suffering with terrible anxiety, I'd also been having some pains where I'd had the surgery so my oncologist suggested a scan. The results came back clear, I didn't have any cancer in my body. On 16 September I took my last capecitabine tablets, a week later I went back to work!

I've since had my first surveillance scan, which was a PET scan and that showed no evidence of disease too! I have all my surveillance at The Christie, as they offer six monthly scans, whereas my local hospital it's yearly.

My family have coped amazingly well over the past year. My husband has been my absolute rock, I couldn't have got through this without him. We felt our two young children, who were four and one when I was diagnosed, were too young to understand the word cancer when I was diagnosed. We didn't want to worry them and explained that mummy had a poorly tummy and the doctors were going to make it better. Since we've had to deal with COVID at the same time, we've actually got to spend a lot of time together that we might not have done before and this has been really nice.

I think it's really important to have a really positive mindset. I'm trying to do everything I can to stop this from coming back. I have radically changed my diet and increased the amount of exercise I do to try and decrease the risk factors.

Shortly after I was diagnosed with bowel cancer, I came across the most amazing cancer community on Instagram. Emma Campbell liked one of my posts and sent me a private message. She's a young mum like me and our lives are so similar, we're the same age, our kids are similar ages and we really hit it off! We have so much in common. We ended up messaging each other every single day and I don't know what I would without my best bowlie buddy! We've only met twice, but it feels like we have known each other for years. We met at the beach the first time and kids had a blast together.

In December 2020, Emma said she wanted to do some fundraising. I said I was thinking of doing the same and this morphed into us undertaking tough challenges each month to raise money for Bowel Cancer UK. We wanted to raise £10,000 by the end of 2021. We have virtually cycled from Land's End to John O'Groats and climbed the height of Ben Nevis by running up and down the stairs. In March, we did some baking, which Emma is really good at. I'm rubbish at baking, so I learned how to do the splits! During April we are taking part in Step up for 30 for Bowel Cancer Awareness Month.

We really wanted to do something amazing to raise even more money for Bowel Cancer UK. I've always dreamt of climbing Mount Kilimajaro, so I suggested this to Emma. She is just as crazy as me, so of course said she would love to do it too! We are travelling to Tanzania in January 2022 to complete the trek and hope to raise another £10,000, which will cover the cost of the trip and donations to Bowel Cancer UK. We are also trying to get a team of people to complete the climb with us, we've had a lot of interest so far!

Now that treatment is over, what I really want is to get back to normal life. I want to spend precious time with my husband and children, go into the office, see family and friends, without having to worry about COVID and cancer. It took me a long time to accept cancer fully, I locked myself away from it and often felt detached from my diagnosis. This just led to increased anxiety and now I've accepted it I really want to raise awareness of the disease and money for the charity. If I can help just one other person get through what I did, it will be worth it.

Donate to their fundraising challenge here. Follow Rebecca, Emma and their trek on Instagram:

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.

Back to younger people with bowel cancer

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