Sophie, United Kingdom

Unfortunately due to my age, looking well and being a relatively fit person it took a long time to get to my diagnosis. My health had seriously deteriorated until it was almost too late. It was a shock yet somewhat a relief that I had answers as to why I was so poorly, but it should have never got to that point. My original concerns should have been listened to and more investigations should have been done.

Being diagnosed during the COVID pandemic was such a strange experience. A blessing in a way that I could lose my hair and hide away, the world was shut so I didn’t feel I was missing out on things and milestones. Yet at the same time, it was incredible scary and isolating. No visitors for treatment and intensive care stays, no one could pop round or help with day to day meals or home life. There was a lot of pressure and an emotional toll on my immediate family and there was so little we could do under such restrictions to make things easier or better for us all.

Reflecting back now, nothing really got me through. Your body goes into fight or flight and you just have to take things day by day, hour by hour. There was no planning ahead, I wouldn’t say there was any quality of life in that time either but ultimately I just knew I wanted to get through my treatment and what I thought was the toughest time of my life. Later I soon found out like many do, that the actual emotional toll comes after treatment finishes as you have an expectation that life will return back to normal but that’s not the case. You’ve got deep trauma and scars that you will have to use to become a newer version of ‘you’.

Still to this day I am very much consumed in the medical setting. Unfortunately 3 years after my lymphoma diagnosis, I was diagnosed with thyroid cancer. Also due to my late diagnosis and the treatment and tumour, I have been left with a lot of late effects and side effects that I’ll have to navigate for the rest of my life.

I really do struggle with the healthcare system. It’s not fit for those with complex and chronic issues. Processes and support is so hard to find, which is why a lot of people turn to charities for support. There’s been more times than I can count where my needs have not been met, but it was down to me being resilient and advocating for myself that helps me through, but that in itself can be exhausting.

I truly believe that it is so important to know your own body and push for the care and compassion that you deserve. Going through a cancer diagnosis is hard enough, but having that support from professionals and your support system should be the bare minimum.

Always advocate for yourself, make sure you are heard if something doesn’t feel right and don’t always accept the first option provided. Assess all the information you have and make an informed decision and ask questions even if they seem small or irrelevant.