Sooz’s story

On September 4, 2023, I was diagnosed with rectal cancer at the age of 45. It was a shock to say the least, as I had no truly definitive symptoms other than some constipation while I was traveling in France, which I put down to eating amazing cheese and drinking rose. When I returned from France, my horse became very ill with salmonella, and I had gastro-like symptoms that I thought must have also been salmonella. A visit to the GP, followed by blood and stool tests, returned no unusual results, but I had a further attack of ‘gastro’, so my GP referred me to have a colonoscopy.

When I woke from the colonoscopy something seemed abnormal, as I wasn’t offered anything to eat or drink, and was told by the nurse that the gastroenterologist would be in to see me. I received the news from the gastroenterologist that he had located a tumour, but I took it in my stride, thinking ‘surgery will fix that, and I’ll move on’. I was sent to have a CT that evening and referred to a surgeon later that week. Prior to seeing the surgeon, I also had an MRI.

Unfortunately, the news from the surgeon was not good. The CT scan and MRI revealed that rectal cancer had metastasised to my uterus, pelvic lymph nodes, and my lungs. Surgery was not the preferred option straight away, and I was referred to an oncologist and had a PET scan. Ten days after what I thought would be a routine colonoscopy, I started chemotherapy and was eternally grateful to live in a time and country where such treatment could commence so quickly.

I am generally a very happy and positive person and have taken that attitude into my treatment; I am confident there is nothing but a positive outcome for me. I can’t imagine approaching the diagnosis and treatment any other way, but it was vital for my kids (aged 13 and 11at the time of my diagnosis) to see me as positive. I also really believe that a positive mindset can really affect wellness and wellbeing.

I started 12 rounds of chemotherapy on 15 September 2023. Treatments were two weeks apart and each infusion lasted three days, which felt like a vigorous assault at times but my first follow-up PET scan after three rounds showed all tumours shrinking and activity decreasing, and I had the same results at after 7 treatments and 12 treatments. Excitingly, I finished chemo on 16 February 2024 and started getting strong for surgery.  My oncologist and I were so sure that I had it beat provided the surgery was successful I would have radiation on the two tumours in my lungs and I would be cancer free!

Surgery was the 25^th of March 2024, and I cried tears of joy when my surgeon said he got clear margins.  I was also so relieved that I avoided having a stoma as well!

In May 2024, I had my PET scan to plan the radiation of the two tumours in my lungs.  Disappointingly, the tumours in my lungs had grown and there were now 10 visible tumours instead of the 2!  It shocked me and I got depressed.  But instead of going down a very dark hole I picked myself up, I started chemo again (a different one, an oral one that was on a 3-week cycle) and I got to work on planning a fabulous fundraising party.

The tumours stayed the same size on the following PET scan so we decided to try something out of the box. I trialled immunotherapy and stereotactic radiation and had high hopes but unfortunately I got autoimmune hepatitis.

In the time it took to get my liver right, the tumours grew and multiplied again… So November 2024 I restarted fortnightly chemo infusions lasting three day at a time.  Next PET scan is March and I am hopeful tumours will be shrining as they did at the beginning, or at the very least stayed the same.

I didn’t lose all my hair and while on the first chemo but I have lost all my hair since I restarted the infusions. While not pleasant, I am handling the side effects well. The largest side effect for me was and still is crushing fatigue. I have not felt physically up to be able to work as a physiotherapist. I am lucky that I can take time off work.  I have been able to ride horses this second time around and I am incredibly grateful to have that for exercise and my mental health.

My friends and family and my clients kept asking what they could do to help. I am very fortunate and have an amazing support network, so I asked my friends and family to send me “glimmers” of pink and orange that they saw through the day and I posted them to my Instagram it surrounded me with more love and positivity.

I also asked my friends and family to share my story to raise some awareness of early-onset bowel cancer and also to ensure that if they were over 50 to use their screening tests.

My friends took this further and created hats and bangles with #sooziesfloozies on them they are bright pink and so many people ask what the hats and bangles are about which results in my story being told.

With early-onset colorectal cancer on the rise, I want to increase awareness about it and promote further research into why it is increasing. But I also want to ensure all cancer patients no matter what stage or type build resilience and find joy in life.