Sarah's story
Sometimes, I wonder what it would be like to have a body that works. How it might feel to wake up refreshed, pain-free, and ready to run into what the day brings. To have a healthcare system that is built to help you, and where doctors believe you. But I honestly cannot remember a time when that was true for me. I
I am a walking compendium of chronic health conditions that many medical professionals have never heard of, let alone know how to treat! Unfortunately, the healthcare system is not a safe place for me, which was painfully apparent whilst going through gruelling and demoralising cancer treatment. I am sharing my story because stories like mine are not rare, they are just rarely believed.
Despite everything, I am diligent when it comes to my health, and when I found a lump in my armpit whilst on holiday in 2023, I made sure to keep an eye on it. Some days it was more noticeable than others, but I thought it was just me being run down, or another lump to join the party (I had others checked previously that were lipomas). I made sure to get it checked out when I got home, getting referred to the breast clinic, where I had biopsies and a mammogram. I was promptly sent on my way, noting that my mammogram was "clear". When I returned two weeks later for my biopsy results, I was diagnosed with stage 3, grade 3 triple negative breast cancer - the most aggressive and hardest to treat. I was 36 years old. The lump that I had found was one of my cancer positive nodes, and an MRI scan would later show that I had a main primary mass measuring around 5cm, with satellite sites to around 8.5cm. THIS is why I am passionate about people knowing their breast density. Breast density can massively influence a mammogram reading, and we should all feel able to advocate for additional testing.
My diagnosis was unexpected, but it also set off a protracted cancer journey, where everything that could go wrong, did go wrong.
There were multiple medical negligence issues, but also issues with medics not listening to me about how my body reacts differently due to my chronic conditions. This cavalier attitude meant that I had one of the worst allergic reactions to chemotherapy that the hospital had ever seen, resulting in life-threatening Stevens-Johnson Syndrome, and which halted my treatment for months.
My treatment has, so far, included fertility preservation (as I have no children), 17 rounds of chemotherapy, a bilateral (double) goldilocks mastectomy with full lymph node removal, lymphovenous anastomosis surgery, 15 rounds of radiotherapy, lipo-modelling, and scar revision surgery. I crashed into menopause, and I had many other side effects, some resulting in extended hospital stays, others that will be life-long. I will need some further surgery and treatment, and I will never fully get over the trauma and PTSD sustained.
Overall, I feel like I have been through the wringer, and sometimes, it can all feel a little too much. However, if I have learnt anything through all of this, it is the knowledge that I am strong, resilient, and determined. I am passionate about raising awareness and understanding of how disabilities and chronic medical conditions can affect treatments, giving people the confidence to advocate for themselves.
Remember; “You never know how strong you are until being strong is your only choice” – Bob Marley
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