Carolyn’s Story
15/01/07: Carolyn Calcutt
My father had severe Rheumatoid Arthritis and died from the side effects of the drugs (since withdrawn) he used; the day I was finally told that I had Rheumatoid Arthritis, however, my overriding feeling was one of enormous relief! I had spent nearly 2 years feeling unwell with episodes of pain and swelling in vario
us joints, which I was told were psychosomatic.
I was then in my early thirties, running the Orthoptic Department in a large London teaching hospital, National Chairman of my professional association, had my own private practice in Harley Street and a husband and large country house to care for. The last thing I needed was to be sick, but at least I had found the reason for feeling unwell.
That was more than 30 years ago, and the years in between have been something of a roller coaster ride. I continued to work full time until I reached 65, although at times it was a battle, particularly commuting by train and tube to work for over 20 years. There were times when I do not know how I managed, but somehow I did.
I tried most NSAIDS, combined at various times with gold injections, hydroxychloroquine, penicillamine and methotrexate. Sometimes the medication worked but mostly it did not, although I did have periods of remission along the way. I was helped by sojourns in hospital or escapes from the cold damp winter. Not one to sit about, I managed to combine my winter sun trips with a major research project in South Africa and university lecturing in Australia!
I travelled widely, soon realising that the airlines are brilliant if you need help. Unfortunately, my Rheumatoid Arthritis was very aggressive, so there was usually an annual visit to the orthopaedic surgeon for another prosthesis or another joint to be fused and pinned. Things got even more complicated when in 1987 I developed Graves disease, closely followed by thyroid eye disease - not the best problem for an eye-care professional to suffer!
In 1992, I began to wonder how much longer I could continue working, when I was approached by the team from Kennedy Institute about going on the first anti-TNF trial at Charing Cross Hospital. The rest is history. I had a course of infusions, and gradually my active disease started to subside, and the subsequent flare ups have been controlled with prednisolone and methotrexate. At the time, I had no idea that I was participating in a trial of a drug which would change lives for many RA sufferers; I simply knew I would try anything.
I have not, of course, been entirely sensible throughout my rheumatoid life! At first I could not come to terms with the disease and used to get flare ups having raced on the beach with my nephew and niece, or burned the candle at both ends, but a serious lecture from my rheumatologist made me realise the error of my ways! I was always back at work and driving a car at the first possible opportunity after my surgeries, which resulted in some crashing falls off my crutches.
Although I didn’t go bungee jumping at Victoria Falls, two weeks after the plaster was removed from my fused ankle, I did find myself having to clamber down a mud bank of the Zambezi River to get into a boat! Interestingly this was the only one of my six safari trips that the game rangers were less than sympathetic and helpful.
I’ve also been to India and Egypt, where the greatest hazard has always been getting up the steps into the tour bus. However there’s usually been someone around to assist with a hearty shove of my rear end. The problem with India though was the inordinate number of steps without hand rails! My travels have also taken in various places in America and Canada, Tahiti, Fiji and Cook Islands, Australia, New Zealand, Malaysia, Singapore and Hong Kong, and most western European countries. My favourite continent is Africa, where I have visited Kenya, Tanzania and Zanzibar, various other Indian Oceans islands, Zambia, Zimbabwe, Namibia and South Africa.
None of this would have been possible without the wonderful team at Charing Cross, headed initially by Dr Tom Scott, followed by Professor Tiny Maini (now Professor Sir Ravinder Maini), and currently Professor Peter Taylor, and all the brilliant registrars and nurses who have so patiently cared for me over the years.
Not an easy task to cope with a fellow member of staff who is determined that RA won’t stop her doing anything, who then needed someone to pick up the pieces!
Carolyn still works part-time as an optometrist and as a Volunteer in the NRAS Office.