Rhian, papillary thyroid cancer
When were you diagnosed and what with?
I was diagnosed with papillary thyroid cancer April 2012.
How did you find out you had cancer?
I felt lumps in my neck and felt my neck to be swollen. As a GP myself, I was a bit worried. I had an ultrasound scan which was reported as normal in the January of 2012. My gut instinct told me something was not right and, having medical friends, I picked the brains of an ear, nose and throat surgeon who advised seeing a specialist in ENT issues to arrange for a specialist to do the ultrasound. I paid privately for this and had a repeat ultrasound in the February – this radiologist was shocked and said that my entire thryroid gland and all neck lymph nodes looked cancerous.
Cue another months of biopsies and other tests as apparently I was a bit of a confusing case!
I finally received the diagnosis in rather a slap dash manner by my ENT consultant – I was on my own at the time and although I was not surprised I was quite shocked.
What did you think and feel when you were diagnosed?
I suppose I immediately went into planning and preparation mode. I had to sort out work and cover for me at my busy practice. I didn’t feel much at the time - that came a few years later! I was busy trying to get through the diagnosis and treatment.
How did the people around you react?
My friends and family were shocked, of course. They were very worried and to be honest I think I distanced myself as I found it difficult to see the pain I was causing them. They were, however, supportive and stayed around and helped me get through the diagnosis and treatment.
What treatment did you have?
I had a total thyroidectomy on the 3rd May 2012. This was the most traumatic experience. I had to be cut from one side of my neck to the other. From being a young, active woman I suddenly looked like Frankenstein! I also had complications of surgery involving my eye – the nerves in the neck that govern eyelid movement were damaged due to the extent of my lymph node spread. Unfortunately I was left with what they call a Horner’s which is a dropping eyelid and a pupil that doesn’t change size.
A month later during Wimbledon week (I recall vividly) I had to go into isolation for radioactive iodine treatment. I had a room to myself and had to go in with things I was happy to dispose of after the 2 weeks ended as everything I would come into contact would become radioactive. They brought the treatment daily and it was like something out of a sci-fi movie. A physicist in white overalls would wheel a trolley down the corridor to my room and pass me a test tube out of a liquid nitrogen filled container – I would have to drink this liquid and place it back on the trolley. The only respite was the joyful tea lady who came round with her trolley to keep me company with her booming voice!
How did you feel through treatment?
I felt determined and “on a mission”. I didn’t allow much time to think or feel. I was so busy getting physically treated.
What happened after treatment finished?
I so wanted to “get back to normal” that I went straight back to work in the August. This was a challenge and I did a sort of gradual return to work but with my type of job this is difficult to sustain. To be honest I spent a few years being an ostrich, trying to move on and not think too much about cancer.
This finally caught up with me in 2016 when I realised that I needed to deal with the emotional and psychological effects of cancer, as well as its after effects.
I am left without a thyroid gland, which leaves me with little or no metabolism. I sleep poorly yet need to sleep 10-12 hours daily. I am exhausted and in pain daily due to muscle wastage as a result of my thyroid hormone replacement, yet I keep gaining weight due to poor metabolism. It is proving challenging and frustrating and this drawn out process is causing me more upset than the actual treatment for cancer. I have found it difficult to deal with the chronic nature of the after-effects of cancer.
I suffered a bout of depression in 2016 and finally realised that I needed support – I felt I needed to be understood and supported by people who knew what I had been through.
How did you get involved with Shine?
I found Shine online originally and made contact with my local network leaders Rhian and Lucy in Cardiff. I was nervous to attend a big group gathering so they agreed to meet me in a local bar – I felt understood immediately. This was the beginning of fantastic friendships. They have continued to support me ever since and encouraged me to engage more and more with Shine.
They encouraged me to attend the Working after Cancer workshop, Shine camp and, recently, Shine’s Great Escape. I am so grateful to them for their support and friendship.
What difference has Shine made to you?
I feel supported and understood at last. It took me a long time of feeling lost and isolated before engaging with Shine and I wish I had done so sooner.
The Working after Cancer workshop was very useful and helped me go back to my work with a better idea of how to communicate what I was experiencing.
Shine Camp is a fantastic weekend full of fun and support and helped me feel that there is a great community out there ready to support and help each other.
The Shine Great Escape was the most powerful experience. The group of friends that I have made and the support network we have is fantastic. I finally feel able to accept what has happened and to start to be more supportive of myself!
How do you feel now about your experiences? What‘s been the biggest change you’ve faced?
The biggest change for me has been in my mindset. While the whole experience has been very stressful and upsetting I can honestly say that I am in a much better place mindset wise now. I have clearer boundaries, I am happy to express myself, I am aware of what my limitations are and I have a much better idea of who I am as a person. Cancer made me reflect a lot and reconsider my priorities.
I also think honestly it has made me a better doctor – I feel I understand what it is to be unwell, to feel dreadful and I also understand the emotional consequences of such experiences.
If you could give one piece of advice to yourself before your what would it be?
Don’t sweat the small stuff!