SECRETARY - Cy Davies
My name is Cy Davies. I am the Secretary of this Support group and one of the founder members in 2004. I was 58 when I was diagnosed in 2001.
In late 2000 I went to my GP complaining of aching in my back which would come and go every few weeks. I had no obvious lump in my neck The only relief I got from the aching was to lie down and stretch my back. My GP suggested some blood tests. When I went back for the results he said that my thyroid results were not normal, but suggested the blood tests be repeated just to check that the initial results may have been unrepresentative. Sure enough the second set confirmed the original results.
He referred me to an endocrinologist in early 2001. He examined me and suggested a fine needle examination with ultrasound. This was all new to me and there had been no suggestion of thyroid cancer. When the doctor was carrying out the test, I could see the image on the screen. It was at this point he referred to the small tumour in my thyroid gland. This is when ‘the penny started to drop’. He was referring to possible cancer!! My mind started to race. I had never heard of thyroid cancer!!
The first test came back as ‘acellular’ which meant that the sample did not contain any abnormal cells, so a week later I had another fine needle aspiration test. Sure enough these results came back with abnormal cells.
I was now referred to a thyroid surgeon, Mr Phil Holland at my local hospital. He looked at my results and checked my throat while I swallowed a glass of water.
He confirmed that there was a lump on my thyroid and that it would need to be removed.
I was admitted to hospital in early September 2001 for a total thyroidectomy. When I came round from surgery I was feeling very rough. I had a bleed in my neck which needed to have a drain inserted for three days. I subsequently found out that during surgery they removed 22 lymph nodes from the left side of my neck and three of these were cancerous. Gradually, I recovered after about ten days and was allowed home. I was feeling very sick and sorry for myself and my neck felt as though I had a steel rod inserted in it!!
Before I left hospital, I was seen by the Multi-disciplinary team where Dr Laura Moss, the Consultant Oncologist at Velindre Cancer Centre was present. She said I would need to have Radioiodine Ablation treatment at Velindre probably about 8 to 10 weeks later when the trauma in my neck had settled down. She explained that I would have to go into a lead lined room for three or four days in isolation. My mind started racing thinking about a room with walls lined with dark grey lead!! I was not thinking straight at this point in time!! I also would have to stop taking my replacement thyroxin tablets for three weeks before RAI treatment.
This was not a pleasant experience to say the least! By the end of the second week and through the third week I was so tired and lethargic, my skin was dry and my hair was dry. I had little appetite.
I had a few CT scans towards to end of 2001 and went into the isolation room for my radioiodine treatment. I was in for four days while the radio-activity subsided to a safe level for me to be let out into the wide world, albeit with restrictions on who I could be in contact with.
Gradually I made a recovery, but got very tired during the day. I started back to work part time in 2002, but found it very tiring. Eventually I decided that there was more to life than working so I retired in July 2004.
The first year after surgery and RAI, I was on three monthly check-ups. These then spaced out to six monthly which was worrying. I felt supported by having three monthly checks, but then my mind started racing again thinking what would I do if anything happened within six months!! Finally, the most frightening words to hear were ‘we don’t need to see you for a YEAR! ‘
I am now on annual checks.
Looking back at the time I was diagnosed and during treatment, my wife and I were completely on our own coming to terms with the fact that I had cancer. There was no one to talk to. I felt quite isolated having this rare form of cancer. There was little information available.
In January 2004 I received a letter from Dr Moss’s nurse specialist Heidi Trottman, asking whether I would be interested in joining and forming a self help support group. I thought this was an excellent idea where patients could have contact with other patients and talk to each other. I went along to the first meeting where there were about 15 people. Heidi explained the importance of having a self-help support group for this rarer cancer. Everyone in the meeting agreed that there was no one to talk to after diagnoses.
Over the next three meetings, we had to identify a Chairperson, Secretary and a Treasurer. I volunteered to be Secretary and ten years later as they say is history. The Group has grown and has been very active over these years. Hopefully we have been able to help many thyroid cancer patients come to terms with their diagnosis and give them some hope! I have seen the Group grow and become the successful Group it is today.
We are the only registered charity in Wales supporting this rare form of cancer l Tel: 0845 009 2737 l Registered Charity No 1113774