My name is Carol and I am 66 years of age and my cancer story started back in 1992.
I had previously been diagnosed with an underactive thyroid then began to experience extra problems. I was referred to a surgeon who thought I was suffering from Hashimoto’s thyroiditis. Part of my thyroid was removed, I recovered well.
I was shocked at my post-operative check as I was told that there were cancer cells found in the thyroid tissue. Because the cells were contained it was decided that no further treatment would be required. We gradually forgot about the cancer and carried on with our lives.
We had five beautiful grandchildren and were able to take lovely holidays and were even lucky enough to retire early in 2004. However in 2010 I began to lose weight and lost all desire to eat, I also had a cough and a horrible pain in my right arm. My doctor sent me for an x-ray and I knew immediately from the radiographer that it was serious.
She told me to contact my doctor but could not say why. When I did speak to my doctor he told me I had a Lymphoma and that he had already requested an appointment to see a specialist. Three days later the appointment took place. When I mentioned the thyroid cancer back in 1992 I was told it was so long ago it couldn’t have returned.
Within three days I was given a full body scan and a biopsy. The results showed that it was Hurthle cell thyroid cancer which had spread to my chest and lungs. Then our nightmare began because we had to be referred to a different specialist.
We sat by the phone for days waiting for an appointment. When the day finally arrived we expected to be given a treatment plan but were told we had to see two other specialists for before any decision could be made. I will not bore you with all the details but another six weeks later we still did not have a plan.
In desperation we complained to PALS and finally received an appointment to see an oncologist. By this time we were under no illusion that we were in a very difficult position. The only treatment available was RAI and between May 2011 and May 2012 I received three treatments at six month intervals, I didn’t find the treatment too bad however in the isolation ward you were just forgotten.
Luckily a friend found out about Butterfly. The first time I spoke to Kate was wonderful, to have someone to whom you could talk and the knowledge that I was no longer alone facing cancer made a huge difference.
Unfortunately none of the RAI treatments made a difference and the cancer has spread to my pelvis. Kate had told us of the existence of a drug called Sorafenib but it was not readily available for thyroid cancer. Our oncologist agreed that the next step was to try and obtain this drug. Again it’s a long story but 14 weeks later and we were getting nowhere.
So we asked for advice from Kate, Julia Black (Rarer Cancer Forum) and our local MP. The information and advice we received led us to sending an E-mail to the chairman of our regional health authority. We explained my situation and details about where the drug was being used. The very next day we heard that our application had been successful.
I have been taking the drug for nearly three months and it will be a little while before we know how successful it has been. I don’t know how my story will end but for now we will carry on living our lives with hope and determination to keep fighting. We hope any one in a similar situation to me will be encouraged to fight for the chance to try treatments and not be put off by bureaucracy.
We are very sad to advise that Carol lost her battle with her disease in April 2015, she was a delightful lady and it was an honour and a privilege to support her. God bless Carol x