Thyroid Cancer Awareness Month is an important one for me and so when I was approached to share my story again this month, I jumped at the chance. Since I was diagnosed with thyroid cancer in 2021, I have become a little bit obsessed with checking people’s necks. If anyone is on a Zoom call or I’m in a Team’s meeting, by the end of it I will have studied everyone’s necks for any noticeable lumps and bumps.
The reason being, I didn’t notice mine. In 2020 during lockdown, I was one of the unfortunate ones to catch covid at the beginning of the pandemic, I felt pretty rubbish for a long time and noticed that the glands in my neck swelled quite a lot during the time that I had it. By the summer most had gone back down, apart from one on the side of my neck, which was slightly raised. I didn’t worry…my GP didn’t worry, and my blood tests all came back normal so I forgot about it.
Fast forward to Christmas and I noticed again that the swelling was still visible, and I was starting to feel a slight tight feeling whenever I laid down or turned my head. Nothing uncomfortable but I just had a worry that perhaps it could be something that needed investigating further. I’d lost both my parents to cancer and my sister had just been diagnosed with breast cancer, so I knew it needed to be checked again.
This time I was fast-tracked to ENT where again I was told not to worry…it would probably be nothing but that they would check it out with an ultrasound. Anybody who has ever had to wait for an appointment, or a result will know that time seems to slow down dramatically and so the first two weeks of 2021 went by at a snail’s pace. I so hoped that the consultant radiologist would find an accumulation of chocolate post-Christmas to be the cause of the swelling in my neck, but unfortunately it wasn’t.
Two biopsies and a surgery four months later confirmed my worst fears, it was cancer. That word takes your breath away. In fact, it’s almost not real, and trying to process that in the consultation room and on the car drive home is the strangest thing. Because life doesn’t stop when you get that diagnosis, people carry on. I still went to work, did the school run, made the dinner and cleaned the house despite my world feeling like it had exploded.
My cancer had a name Hürthle Cell Carcinoma, a rare type of Thyroid Cancer. I had already had the lump removed by the time I received my diagnosis and now needed to have the rest of my thyroid removed. So, the way I dealt with this was by reminding myself that I was already halfway through it all. The cancer had been removed and everything from now on was preventative. I was already winning this battle.
However, having your thyroid removed isn’t always that straight forward. Had I known more about the thyroid and parathyroids (which sit behind the thyroid) I may have felt better prepared and have a better understanding to enable me to ask the right questions about my treatment and after-care.
The remaining thyroid was removed and my parathyroids were possibly damaged during surgery, they never recovered. I had no idea what parathyroids were (they regulate your calcium) and they were never mentioned to me, so I figured it was nothing to worry about. However, losing my thyroid and parathyroids left me with hypothyroidism and hypoparathyroidism. Meaning a lifetime of medication and a whole range of other not-so-fun symptoms.
Following radio-iodine treatment, I was given the all-clear in 2022 and a positive result in that all the cancer had been removed.
The cancer hadn’t spread, and the radioiodine had been very effective; and the likelihood of it returning was minimal. People presume that the all-clear signifies getting your life back and getting back to normal, but your normal no longer exists. I would say the hardest (and longest) part of the journey was then piecing my life back together, except some of those pieces are now missing and without them things will no longer be the same and I needed to find my new normal.
Two months after the all clear I completely broke down. I felt completely alone, despite having my friends and family around me. I just didn’t know how I was ever going to be able to be me again. I was trying to manage my medication, get my head around managing without my thyroid and parathyroids, be a mum, wife, friend, employee…all of it was completely overwhelming.
That’s when Macmillan came in and put me on the iHope course, they got me some support and through them I discovered the Yorkshire Cancer Community and The Butterfly Thyroid Cancer Trust. The relief of meeting and talking to people who understood exactly what I was feeling was enormous. I didn’t feel alone anymore, and I started to feel more confident about taking more control of my health and not being afraid to challenge people involved in my care.
Talking really does help and educating people about cancer is vital so that people can understand just how you feel and so they can help you to reach your new normal. This was really important at work, I really needed work on my side so that I could manage my symptoms and workload effectively, attend appointments and take a nap if I needed to.
People sometimes call Thyroid Cancer “the easy cancer” there is nothing easy about any cancer. However, since my diagnosis I feel more encouraged that there is more and more research and information being carried out all the time. It’s becoming more widely recognised as a cancer that can affect men and women of all ages and much easier to diagnose and act upon. Even in the two years since I had my surgeries and treatment research is being carried out to look at less invasive treatments and surgeries, which is fantastic!
Thanks to the people that have helped me I’ve now started to find my new normal and it’s going OK. Yes, I take a lot of medication, yes, I wake up each day not knowing if I am going to feel good or bad.
But less than a year on I felt well enough to take on the zipline Velocity 2 and raise almost £1k for the Butterfly Thyroid Cancer Trust and I felt amazing! I then joined the Yorkshire Cancer Community and signed up as a Cancer Champion helping to educate people in my workplace about cancer. I try to encourage people to look out for signs that something isn’t right and change people’s perceptions about cancer.
My aim is to help people to feel confident and supported to do something about it straight away. I now know that a cancer diagnosis isn’t necessarily a death sentence and I’ve met some amazing people who live with cancer and enjoy life to the full who really inspire me. I would say cancer changed my life in good ways and bad, but it also gave me some precious gifts…I’m more resilient than I thought, I feel more courageous to challenge myself and take leaps and it’s brought some amazing people into my life for which I am grateful.
My advice for anyone who notices anything unusual to be proactive and get straight to the GP. In my case my only symptom was a slightly raised area on my neck…don’t ignore it even if you feel well, because it could save your life and the earlier you catch it, the easier the treatment, the longer your life.
For more information, visit butterfly: the thyroid cancer trust
The Butterfly, Me and the Big C (butterflymeandbigc.blogspot.com)
