This is the first time I have put my story into words. I have very much had the mindset of “getting on with it” which seems to work for me. But when Mesothelioma UK approached me to be a part of its Winter appeal, I was happy to share for such a good cause. So, here goes.
In January 2023, aged 27, I went for a 5k run, which was usually a very comfortable distance for me, I have run many half-marathons and the London Marathon a few years ago for my Mum, Katherine, who was diagnosed with mesothelioma in 2017 aged 47 – sadly Mum died two years later. But this run felt different.
I was struggling and breathless. I went to my GP who had a listen of my lungs and referred me to have an X-ray the next week. When I walked in for my X-ray I was met with two girls, in their twenties- about the same age as me. They took an X-ray of my chest and they immediately looked at each other in alarm. Having already had experience with mesothelioma, I knew exactly what was going on. I only knew of mesothelioma because of Mum, I never thought I’d be facing it myself, let alone a few years later.
I was sat on a chair in the corridor and a doctor came to speak to me, “You have a lot of fluid on your lung,” she said, “we want you to have a CT scan immediately.”
Diagnosis
Over the course of a few months, I was poked and prodded to no end as nothing obvious was coming up in my scans. I had four litres of fluid sitting on my lung which had to be drained every few weeks. The fluid was tested a few times, I had a number of scans and finally a biopsy. From the biopsy results, I was told in April 2023 that I had pleural mesothelioma in my right lung.
When I was diagnosed, I felt confused and angry. I didn’t know where to turn or who to ask the specific questions about mesothelioma. Whilst my nurses and doctor were knowledgeable of meso, they weren’t specialised in it. A nurse who really understood mesothelioma and saw different experiences makes all the difference—someone to guide me, to listen, and to help me navigate my way through.
I remember Sarah Morgan, the Mesothelioma UK nurse who then covered Wales, giving me a call soon after diagnosis. It was the first time I’d spoken to a mesothelioma specialist since I first went to my GP three months before. We chatted about how I was feeling, treatment options and I was able to ask her any questions I had. Sarah was so calm throughout the call and made me feel at ease. Being able to speak to Sarah was brilliant, and a lifeline others with mesothelioma don’t have. After my conversation with Sarah, I felt a glimmer of control over my diagnosis. I’ve since looked at how far away the closest Mesothelioma UK nurse is to me. I’d have to travel 42 miles for an in-person appointment with a specialist Mesothelioma UK nurse – it feels like help is just out of reach.
Whilst I feel lucky being in Cardiff as my nurses and doctors know a lot about mesothelioma, I know this isn’t always the case, and having access to a mesothelioma specialist in the thick of it is priceless.
That one phone call with Sarah helped me to unlock the additional support that Mesothelioma UK offer that I wasn’t aware of. Mesothelioma wasn’t just a diagnosis; it came with question marks around things I didn’t think I’d have to think about. Did I need a Will? Was I entitled to benefits support? Can I access Clinical Trials? Sarah gave me hope and reassurance when I needed it most and put me in touch with the relevant people at the charity who could help me.
I tried immunotherapy which unfortunately didn’t work as quickly as we wanted, so I moved onto chemotherapy from November 23 to February 24. My scan results have been stable since.
Future
I am two years into my mesothelioma journey and whilst there have been a few downs (a 10-day hospital stay for a nasty infection I picked up after chemo which actually “dried up” my fluid, so I was able to have my drain removed in May this year!) I have remained otherwise healthy and happy.
I got married to my wonderful Chris in September last year, we have been on countless holidays and trips away with friends and family, I am still working full time, and I have started running again. People often joke about how busy our social calendars are!
My family and friends have been a huge lifeline too- fundraising for various charities including MUK. We are planning on walking across Gower next year to raise awareness and money.
I recently attended Mesothelioma UK’s Community Dinner and Patient and Carer Day, where I met a lot of the MUK team and their nurses. It was clear the nurses work hard, they are so friendly and helpful, and they are exactly who you need when you are facing one of the most difficult things.
I know these times won’t last as long as we want, but certain things make it easier to come to terms with that fact. Things like who you surround yourself with, how you choose to look at life, and how you choose to spend your time.
This has been quite hard to write, but I want to reiterate how important that phone call with Sarah was to Chris and I. Some patients diagnosed with mesothelioma do not have access to a Mesothelioma UK nurse in their area and that must change. Providing access to a Mesothelioma UK nurse truly is the greatest gift you could give this Christmas to mesothelioma patients.
