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I was so excited as the plane descended through the smog to land at Delhi airport for our first tour of India. It was then I got my first surprise. I couldn’t get up out of my seat! Suddenly it was a huge struggle to stand up. I forced myself to my feet and carried on with our tour ….struggling each day to get going and to walk with painful stiff muscles. On my return home my GP diagnosed Polymyalgia Rheumatica – which I had never heard of … This meant high doses of steroids which were like fairy dust and took away the pain and stiffness, these were gradually tapered. I searched out a consultant who specialised in this and found Professor Dasgupta , at Southend Hospital about 40 mins drive from my house. He looked after me for the next 6 years Then I got my second surprise just after lockdown in 2020.
I developed symptoms I didn’t recognise. I had difficulty in chewing food, I had awful earache and then 2 swellings appeared above my eyebrows… fortunately the Rheumatology team at Southend hospital rang round to check up on PMR patients following lockdown.
I was able to describe my symptoms, go for a temporal artery ultrasound scan with Professor Dasgupta who announced ‘ ah a classic case of Giant Cell Arteritis (GCA) ! My inflammation blood test levels had risen. Back onto high dose steroids, this time slightly more alarming, because if not caught in time GCA can lead to blindness. I know that headaches and disturbed vision were key symptoms of GCA- but I didn’t have those symptoms so didn’t suspect It.
So far so good, I was asymptomatic! Until my ESR and CRP inflammatory levels suddenly rose and at a regular appointment my Professor decided I should have PET scan as he suspected involvement of a larger artery but much to my (and his !) surprise a Thymoma tumour was found. 5cms by 2cms with a good margin round it.
I asked to be referred to Professor Popat at the Royal Marsden Hospital. I was seen within a few weeks and straightaway he told me the ‘beast ‘ needed to be taken out. He then referred me to surgeon Simon Jordan at the Royal Brompton – just behind the Marsden. A video appointment with him and surgery took place in June 2021. It was successful and no residual disease was found in a subsequent PET scan.
I didn’t need chemotherapy or radiotherapy. The care I received was exceptional. The surgery was a VATS procedure and carried out under my arm in the side of my body as if carried out through my sternum , healing would been more difficult because of long term steroid use. I will be monitored yearly for ten years.
Interestingly PMR, GCA and my Thymoma are all connected with my immune system which is why I included them in this sequence of events. The Thymoma may have been there sometime as there was some calcification. Was it there before my PMR/GCA- I will never know… What I do I know though is that I was extremely lucky that my Stage 1 thymoma was unexpectedly found and that surgery was prompt during these difficult times . It really has been the NHS at its best…..for which I am so grateful
