The story of how Thyroid Cancer Support West (TCSW) started is that of a personal journey born from the need to make things better for others.
The story started when Judith, our founder and chair, received an unexpected phone call at home. "I received a phone call from my family doctor asking how I was coping with my cancer diagnosis", Judith explains. However, this was the first Judith knew of her diagnosis. She was asked to go and see her GP, but as Judith recalls, "he knew nothing about thyroid cancer and just gave me a link to an American website." Judith had been to her local hospital several times after finding a neck lump. She had opted for her first operation "in case the multinodular goitre turns cancerous in the future." But to say this whole experience of finding out was a shock is a huge understatement!!
The following day at the hospital (when Judith should have been told the news), she was told she needed another operation and was transferred to another consultant. A second operation was followed by another different consultant appointment where she was told she would need 2 treatments with Radioactive Iodine.
These followed over the next few months, with Judith spending 4 days in isolation each time, and were preceded each time by having to come off her thyroxine tablets and follow a Low Iodine Diet. At the time, Judith often told family that she "felt very alone and very cold and lethargic."
A few years later, Judith went to a meeting of Thyroid Cancer Support Group Wales in Cardiff. Judith recalls, "It was lovely to meet others who had had thyroid cancer – the first time I had done so. I came home and thought about what I could do!"
At her next check-up, Judith broached the subject of a support group in the area with Dr Beasley, who was very supportive. There had been one before, but it had folded as there was not enough support. It would have to cover a broader area to succeed. Dr Beasley, together with Judith, Rob (CNS) and Sue (now one of our trustees), met and booked their first meeting. This was a great success and, after feedback from those attending, the group was named Thyroid Cancer Support West. The only thing left to do was design a logo; thankfully, one of Judith's daughters designed the logo, depicting the group as a tree supporting all the members (the butterflies).
We obtained an initial grant from Macmillan for our first meeting. Since then, we have been grateful to receive another Macmillan grant for our display equipment and a grant from Above & Beyond (Bristol Hospital charity) to print our flyers. TCSW then began fundraising; Judith walked the Coleridge Way to raise money for the isolation rooms at Bristol. Other sponsored events also took place along with coffee mornings, etc. We held more regular meetings in Bristol and Taunton. We are incredibly grateful for the support given by the consultants and other speakers, giving their time for free.
We are pleased to say that the treatment pathway has improved over the years but can still be a very isolating experience.
In 2017, Judith decided, "It would be good to have some help. A small group of us formed a committee, and we became a registered charity." Dr Beasley agreed to be our honorary president. We are very grateful for his support and also the support from other NHS staff in the area. We are pleased to have helped many people from the SW area and beyond and have donated items for the Molecular Therapy rooms in Bristol, Cheltenham, and Exeter. We have also been involved with studies into the Low Iodine diet at Bristol. Our flyers go into patient packs throughout the area, and we also hold Awareness events. Our aim is to widen our support in the area and continue to work with The CNSs and other staff in whatever way we can to make patient support as good as possible.