Read the story of how she went on to set up Butterfly North East so that other Thyroid Cancer patients would not have to face the journey alone.
I am writing this on June 7th 2006 exactly six years since I was diagnosed with Thyroid Cancer. Looking back so much has happened since then, lots of it has been very positive, but at the time my family and I were devastated at my diagnosis.
I was 42 years old, enjoying life with my husband and 12 year old son. The left side of my neck swelled up ‘overnight’ and the rest, as they say, is history.
The first two years following diagnosis were tough. I had two operations, one week apart, to remove my thyroid.
The surgery was difficult because of the position of the tumour and I sustained a laryngeal nerve injury during surgery which produced a vocal cord palsy. I also needed calcium.
My voice quality for the first five months was poor but has recovered well, the cord palsy remains and causes problems if I have a cold or am in a dry/smoky atmosphere, breathing becomes difficult and I can have stridor which produces choking sensations.
I wasn’t given any thyroid hormone replacement following surgery and unfortunately had to wait seven weeks for my RAI by which time I was very hypothyroid.
Due to fluid imbalance I had to go back to theatre to have a grommet placed in my ear the day before being admitted for my treatment. I was feeling very depressed by this stage and not being allowed to have my husband come into the room to visit me was really the final straw.
I would have to say that for me personally the four days I spent in isolation were just the worst. Thyroid hormone replacement was commenced, in my case, while I was still in hospital to help the symptoms of hypothyroidism.
I was very lucky to have the support of a wonderful family and excellent doctors, I plagued my surgeon and oncologist with endless questions about the disease and my prognosis. They were exceptionally patient with me and did their utmost to support me.
I was very anxious and depressed during the initial six months, the only way I could cope was to find out everything I could about my disease and I learned fairly quickly that this needed to be sourced only from my professional medical team and not the internet!
I was lucky, I passed my first six month ‘Challenge scan’ and did not require any further RAI treatment, though withdrawing from Thyroxine and becoming hypothyroid again was a total pain, the disruption to both normal family and working life is hard to accept.
I was worried when I discovered an enlarged lymph node in my neck a few months after this but this was removed and was benign.
A year after surgery I was well on the way to getting my life back on track, we were having a new house built and life was busy, I was back at work part time and feeling that maybe life could ’get back to normal’.
Having been a nurse and having had a cancer diagnosis I was fairly ‘body aware’ and went to see a dermatologist as I had noticed that a tiny mole on the side of my foot seemed to be changing slightly.
I wasn’t particularly concerned but he suggested removing it as I thought it had changed. Thoughts of ‘once bitten twice shy’ and ‘no-one could be that unlucky could they?’ came to mind when I went to get my stitches removed on the way to work.
I had a malignant melanoma, I couldn’t believe it. Again I was told I was lucky, it was in situ, in the earliest stage, and hadn’t spread.
Two weeks after moving house I had a skin graft to remove a strip of skin under my left arm which was sewn onto my left foot to cover where the melanoma had been. I couldn‘t walk properly or drive for six weeks.
I then found myself going regularly for two separate oncology follow ups.
As mentioned earlier, I had a wonderful family supporting me and excellent doctors but I still felt very isolated and lonely at times, no-one I knew had even heard of thyroid cancer, radio active iodine, treatment in isolation, challenge scans, becoming hypothyroid for scans and treatment, let alone experienced it.
In Newcastle we don’t have a ‘Specialist or Macmillan Nurse’, there was no patient support apart from family and during clinic visits. How did people cope who were on their own with this?
I was troubled by this and realised through my own experiences that if patients were well informed with reliable information right from the start and could be given the opportunity to have contact with other patients then it would be beneficial to their well being.
I had started to meet with hospital managers and consultants to talk about improving things for thyroid cancer patients and had been invited to talk at a couple of conferences when my surgeon called me and asked if I would talk with a young newly diagnosed patient who was struggling.
That, really, was the beginning of Butterfly North East. Katherine was in her twenties and understandably devastated by her diagnosis. We talked lots, I told her about the treatment and what was involved, visited her in hospital and went with her to scan appointments.
Not only did this help Katherine but it helped me, she was the first person I knew who was going through what I had. That was four years ago and much had happened since then, all good!
After Katherine, more patients got in touch. I gave up work at the practice to concentrate on setting up Butterfly North East full time.
It has taken a lot of hard work and determination to succeed but the reward in seeing what good support can do for other patients is wonderful.
We are now the first registered charity in the UK dedicated solely to the support of people affected by Thyroid Cancer and are both recognised and have the full support of the health care professionals treating patients in our region.
What we can offer is detailed in the web site but to a newly diagnosed patient the opportunity to meet someone who has had the same disease as them and is well/cured so many years on is priceless.
I am now six years on from diagnosis and am told I am cured of my disease. I will continue to have yearly follow ups for the rest of my life. Last month I was finally able to wean off Alphacalcidol (calcium) and will be discharged from the Melanoma clinic in August this year.
Six years of great change and acceptance. Physically I do not feel the same as I did before all of this happened. I cannot do as much without getting very tired and this frustrates me but I am learning to accept that this is just how it is.
I am enjoying life to the full now and am more fulfilled personally than I have ever been.