My name is Sue and this is a brief story of my journey.
Last April, I had a pain in my left cheek and a small lump on my cheekbone. After visiting my dentist and confirming it wasn’t dental-related, I made an appointment with my GP. She sent me for an ultrasound scan and I was then referred to the Oral and Maxillofacial team at my local hospital. I had many more scans, but the lump was growing at an alarming rate. Eventually, I had to have an emergency biopsy. In June, I was finally diagnosed with an aggressive cancerous tumour.
I had a 14-hour life-saving and life-changing surgery on 21 July. The tumour, my cheekbone and all nerves on that side of my face were removed. To replace it: a titanium cheekbone and skin, artery and muscle from my thigh. I also had a neck dissection to remove lymph nodes, as a precaution.
Eight weeks later, when I was still healing, I completed six weeks of Radiotherapy to make sure no cancerous cells were left. I was told that I might lose my left eye, alongside other risks. I found that nobody can prepare you for what you wake up to. One minute I was happy and healthy, the next, fighting for my life and my sight. The reality of the trauma I had faced was sinking in.
During my treatment to remove the cancer, I also felt removed from my emotions. I was on autopilot – fighting to survive and get rid of the cancer that was threatening my life. My mind hadn’t processed that I would lose all my nerves, feelings and expressions on the left side of my face.
Since having cancer it’s been hard to process the emotional impact of looking different to other people. It’s something that’s not talked about much and affects people deeply. I look in the mirror, and I can’t see me anymore. Something has changed in my eyes, as if a light has gone out.
Thank goodness for Changing Faces and their Peer Group Chat Service – an online support group. Weekly sessions with around eight other people who have a variety of visible differences has helped me realise I’m not alone. It’s helped me work hard to turn that light back on and find me again. I know I’m in there somewhere – and I’m going to be a survivor, not a victim!
The group helped me confront my fears and talk to people face to face, who I had never met before. It also made me realise how different people are coping with various conditions that affect their day-to-day lives. Even though our conditions and differences aren’t the same, we’ve all had similar experiences because of our visible differences. We’ve all been stared at, felt self-conscious, lost our confidence and are seeking support. We were a group of people from all different walks of life coming together to share our experiences, heal together and nurture ourselves back to being us. Each week, we would discuss a different topic, like how to manage negative thinking, or how to cope with other people’s reactions.
The support group embodies the word support. You will get so much back from joining one and you have absolutely nothing to lose. Even if you don’t want to say a lot, just listening to others really helps. Sometimes it also helps you to face up to something that you have been running away from.
Since completing my group sessions I have become stronger and more determined to take my life as it is and move on. Before, I was concentrating on my reconstructive surgery, which will happen later this year. I know I will still not be the person I was, but it’s time to love the person I am now. I’m on a different path towards a different journey, now – just with more direction than before.
It’s been a rollercoaster. I could not have got through this without the help and support of all my family and friends, the care I received from the various teams at Royal Shrewsbury Hospital and Princess Royal Hospital Telford, my two amazing surgeons and Changing Faces. We all need support to learn when to reach out for help, and when to accept ourselves.