Katie was diagnosed with stage 3 bowel cancer at the age of 35.
On 1 August 2021 I suffered excruciating stomach pain and blood in my stools, which was in fact the first symptom that I had bowel cancer.
The acute stomach pain was excruciating. I was literally paralysed on the floor whilst I was playing with my son. It lasted approximately 15 minutes and then I was able to crawl to the toilet where I had a bowel movement. I thought it had been a seriously bad case of trapped wind, but then I noticed the colour of my stools to be a purplish red, which I knew I should get checked out. I wasn't too worried at this stage, as I felt fine once the bowel movement had passed, and I had previously had blood in my stools that a number of GPs had dismissed to be normal.
I had zero risk factors for bowel cancer. I was a young age at 35; as a vegetarian I didn't eat red or processed meat, nor did I eat much when I was a meat eater. I ate a high fibre diet; I have always been a healthy weight and I have always been reasonably fit and physically active. I sporadically drank low volumes of alcohol, bar the odd blow out on a night out, and I did not have any family history of bowel cancer; nor did I have any medical history that predisposed me to cancer.
I was lucky that my GP was incredibly diligent, erring on the side of caution. He took my symptoms seriously and referred me for an urgent endoscopy. Perhaps this was helped along by the fact that I took a photo of my stools and the blood that was present, so he too was able to see that it was different to what would be considered to be 'fresh blood'.
It was at the endoscopy that it became clear that there was something not quite right. As I was breastfeeding I wasn't sedated for the procedure, so I was able to fully watch the monitor throughout. The specialist passed the tumour on the way up and it was clear to me that there was something that would require a form of treatment. I questioned the specialist when he brought the endoscope back down to the mass and whilst he started to take a closer look, taking measurements, photos and biopsies. I could see the shock and concern in his eyes as he explained to me behind the surgical mask that he had found a mass and he thought it could be cancer – he had not expected to find anything at all based on my case notes. Following the procedure, my wife was called to join me in the family room, where they went over the next steps in more detail, and the reality came crashing down of what we were likely to be dealing with.
From that point on it has been a whirlwind of tests, surgery, fertility, genetic screening, and chemotherapy.
I was fortunate that my cancer appeared to be contained – stage 2, so they thought initially. This meant that I was able to have a colon resection – an operation where they were able to remove a section of my bowel and stitch it back together. The location of my tumour also meant that as long as the surgery went to plan, I would not require a stoma (a colostomy bag). In theory, removal of the tumour and surrounding tissue meant I was on a curative pathway and I would still have a fully functioning bowel.
My surgery fell the day after my son's first birthday. I was simply grateful that we could have that day as a family to celebrate before being in hospital for a week. Naturally, the procedure was daunting, but I was more concerned about being apart from my son and what it would mean for our bond and his feeding journey. There is no 'good' time to have cancer, but having a young family felt like a terrible time and pretty unjust.
The surgery went well, with one minor hiccup of it being converted to open surgery from keyhole – something that would adversely impact my recovery time. The results of the lymph node analysis came back positive, increasing my cancer staging to stage 3 and meaning that I required adjuvant chemotherapy to suppress a secondary tumour from appearing. I was told I was on the curative pathway still. Fingers crossed.
But before chemotherapy could start, it was time to move on to the decisions on genetic testing and fertility. Due to being under the age of 40, I was referred to the Genetics team at Great Ormond Street Hospital to understand whether I am carrying a gene that increases the risk of bowel cancer. They tested me for Lynch syndrome, which is a gene mutation that increases the chance of certain cancers – with bowel cancer being one of them. Screening involved an in-depth cancer family history questionnaire, a consultation with a genetics specialist, and a blood test to help the genetics team determine what level of routine testing I may need in the future, and potentially for any affected family members as well. Fortunately, my screening has come back negative for Lynch syndrome, though it is not conclusive that there is no genetic link for my cancer, as science may find something new in the future. I have been invited to join a study, and will also keep in contact with the genetics team to find out about any future discoveries I may need to be tested for.
The fertility journey was at least a familiar journey for us and, having been through it before, we knew the options and process well enough. Having my eggs collected was always something that we had planned to do at a later date, so we were simply bringing it forward so that my fertility would not be affected by chemotherapy. However, nothing prepared me for the fact that this was going to be, psychologically, the hardest part of my diagnostic and treatment journey to date. It felt like a process we had to follow because of the cancer, yet one that had a hell of a lot riding on it; I had only a small window in which I could retrieve my eggs, as I had needed to allow enough time for my body to recover from surgery but also needed to start chemotherapy within 12 weeks of my surgery date. With the way that my menstrual cycles fell, this really only left one chance to complete the harvest, and one real chance of retrieving fertile eggs unaffected by chemotherapy. There was such relief to find it had been successful.
Once fertility was over, the hormones were barely out of my system and I was into the chemotherapy process. It sounds rushed, and I guess it had to be, but we were also driving the timeline to get chemo started as soon as possible. In part, this was to have the treatment as early as possible to try to mop up any remaining cancer cells, but we were also concerned about catching COVID and delaying my treatment schedule.
The chemotherapy was pretty rough, and probably not helped by the fact my body had a reaction to capecitabine so I was moved onto raltitrexed (alongside oxaliplatin), with raltitrexed having heavier side effects of fatigue. In all honesty, I think I could have had it a hell of a lot worse, but the mental battle of it, combined with the progressively worsening fatigue, has been intense. The chemotherapy has been like the back end of an endurance race; feeling exhausted, both mentally and physically, and hitting the wall but knowing you have to keep going through it to make it to the finish line. My brain doesn't always work properly, as it feels foggy and I'm not as alert as usual – I can be in a conversation or watching TV and not really know what's going on. My body feels achy and unfit all of the time, and basic activities like playing with my son can be exhausting and, at times, impossible. I have had a baseline, constant feeling of nausea, which was prominent and overbearing close to the infusion of the chemo drugs, but gradually starts to ebb as the cycle goes on.
And, like the endurance race, there are distance markers in the form of your treatment schedule so you know just how far you've got to go, the dread of realising how far it is, and the self-doubt of how you are going to get through it. But there is one key difference: an endurance race is a set distance, whereas a chemo timeline can change as the clinicians react to how your body is handling such a harsh treatment type. Extensions to my treatment plan and delayed cycles due to side effects were tough to deal with, but a necessity we had to accept.
But, we got through it and I could not have done it without the unbelievable, unconditional support of my family and friends. Our little boy has been amazing and adapted so well to the fact that at times I've not been very present or have been unable to play with him, and we are certainly making the most of our time together as I start to get a bit stronger. My scan has since been clear so I have been moved on to the surveillance programme for the next five years. Our focus now is more on my recovery, and getting back to a level of strength and fitness that we can fully enjoy time as a family again.