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Back in 2013 when I was diagnosed with thymic carcinoma I remember being in a state of total shock. I simply couldn’t believe that something like that could happen to me. I have since been told that around 12-15 people are diagnosed with thymic squamous cell carcinoma in the UK every year – not sure how accurate that is, but the point is, even if something is rare, sh*t does happen.
I’d say that the fact that I have had a good outcome is down to three things.
React early and push hard.
I knew something was wrong for several weeks before I was diagnosed. I had a continuous dry cough and wheezing day after day. And woke up every night with my head bathed in sweat. My GP kept telling me I had a chest infection, but I remember walking across a rugby pitch and almost collapsing with exhaustion. In the end I badgered my GP for a chest x-ray which triggered my treatment. If you feel that something has changed, take action and stay with it until you’re feeling better – better safe than sorry.
Find a specialist.
A consultant with experience of dealing with thymoma working in a specialised centre. Because tc is so rare, you need the right specialist treatment. Being treated by someone who is guessing is a risk.
After I was referred to Dr Gilligan at Addenbrookes, I had two rounds of chemotherapy to shrink a tumour in the centre of my chest, a sternotomy, followed by more chemo and radiotherapy. By God’s grace I am still here to try and help others.
Reach out and look after yourself.
I remember that when a nurse asked me how I was doing, I burst into tears down the phone. After weeks of trying to push my diagnosis forward at the local hospital I realised that I felt totally alone, and by putting on a brave face had just neglected myself. Back then, there was nothing like Thymic UK and its Facebook support group, so be kind to yourself, just remember you are not alone and reach out to others – other people have been on the journey and are here to help you.
