Butterfly Thyroid Cancer Trust
Inspired by how an incredibly brave woman turned her own brush with cancer into an opportunity to help others, Fabafterfifty would like to help raise awareness and hopefully funds, for this very worthwhile cause. Kate Farnell shows us how one woman can make a difference!
Kate’s Story: The History of ‘Butterfly Thyroid Cancer Trust’
I am writing in September of 2009, nine 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.
It was a very busy time in my life. I was working with my husband in his Dental Practice, our son was twelve years old and would soon be preparing for important exams at school and, my dad was chronically ill..
I got up one morning and one side of my neck was slightly distended, there was no obvious lump, it felt soft and spongy. I wasn’t in the least bit concerned about what it was because I couldn’t feel a lump, I was blasé about it, it would be nothing. Had I found a breast lump I would have burned rubber on my tyres in getting the see my GP.
I went to see one of our friends, who is a surgeon, and he sent me along for an ultrasound scan. The radiologist took ages doing the scan on the left side and I started to wonder if something really was wrong . He said “you have a tumour in your thyroid, most probably nothing to worry about but we won’t know for sure until you have it out” Hmm I didn’t like that word, I knew most tumours were benign but that’s when I began to realise that all may not be well. I saw a surgeon three days later, he told me I had a “considerable mass” in my neck and that although 9 out of 10 of these lumps were benign but that I was in the right age group for this to be cancer.[Oh crap!] He did a fine needle aspiration of the lump and sent it off to the path lab.
Surgery was scheduled for 4 days later, we cancelled our summer holiday which was due in 2 weeks. The needle biopsy cane back inconclusive and my surgeon explained that I would have to have only the side of my thyroid gland removed with the tumour initially, if I did have cancer I would need a second operation the remove the other half [great] .
The first operation was ok, the first night was a bit rough and the pain relief wasn’t great but after the first 24 hours it wasn’t bad. It’s hard to describe the emotions you go through at this stage unless you’ve been through it. I’m not particularly religious but I prayed a lot for the result to be benign, the thought that I had cancer was unbearable but at least at this stage I still had hope and I tried to remain positive, after all the odds were 90% in my favour weren’t they?
We were lucky in that we only had to wait three days for the results and went to see my surgeon, sitting in the waiting room was awful, we felt sick and I’m sure the entire waiting room could here my heart pounding. We went into see him and came over to me and put his arm around my shoulder [Oh God, here it comes] ”You have a carcinoma in your thyroid gland” [crap, again]] Steven and I looked at each other, he had tears in his eyes. ”Now come on,what are you worried about?” my surgeon said[ “WHAT AM I WORRIED ABOUT????”]
By this time I was having trouble with my voice, it had become very soft and croaky. The surgery had been difficult because of the position of the tumour and I had sustained a laryngeal nerve injury during surgery which produced a vocal cord palsy [paralysed vocal cord] this meant that I lost my voice. So not only did I have cancer but I had no voice [great].
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’ 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 Thyroid Cancer Trust’, 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 seven 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’ 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 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 website 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 nine 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, Nine 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 now facing a new challenge in that my Mum has been diagnosed with dementia and I am learning about how to deal with something else that is entirely unknown to me.
My experiences with cancer have taught me to enjoy life to the full and that life is about today, not next year for the year after, at the grand old age of 52 I find myself more productive and fulfilled personally than I have ever been!.
You can make a donation to the Butterfly Thyroid Cancer Trust Through Just Giving http://www.justgiving.com/butterflyne