Sue’s story

My journey started in June 2021 when I was diagnosed with an aggressive stage 4 SCC tumour on my parotid gland. It took a few scans and a biopsy before it was diagnosed, and the lump grew alarmingly in that time, eventually bursting out the side of my face.

I called it the Alien; it was horrendous. Just like you would imagine cancer to look like, it smelled foul, and bits kept falling off it. I became very adept at making dressings to cover it, changing them every two hours.

I had a 12-hour surgery in July 2021 to remove the tumour. Unfortunately, it had wrapped itself around my main facial nerve, so I had that removed too, and a precautionary neck dissection to remove lymph nodes in that area. They rebuilt my face using muscle, artery and flesh from my right thigh and made me a titanium cheekbone. Luckily, they managed to save my eye, as I had been informed before surgery that it may have to be removed.

I then had six weeks of radiotherapy to endure; one consultant said it was not needed, but it was decided that the one margin was dubious, and it was best to go ahead with it. They say six weeks, but they don’t tell you about the aftermath of radiotherapy. I powered through it all, doing all my exercises relentlessly – determined to get the strength back in my leg and to be able to go hiking again. Mouth exercises to help me eat and talk properly. The strange thing is, from that day to this, no one has ever asked to see my leg or if it’s regained its strength. I now have a sacrificial leg and an adopted cheek.

My radiotherapy finished on 5 November, and I managed to retain my weight. I was their star patient. It was in January when it all hit me like a ton of bricks. I felt like I was in free fall. I had no interest in food, and the weight fell off me. Apparently, I was suffering from PTSD – grieving for what I had lost. Time to pull my big girl knickers up and get myself back up again.

For the next 12 months, I concentrated on getting fitter again. I regained some weight and went walking a lot. The hardest part was trying to get used to the new me. Learning to face people again and go out in public.

It was decided in January 2023 that they would fit a fascia lata sling to lift my mouth and to debulk the graft a bit. I was really looking forward to this happening, but hindsight is a wonderful thing – and if I had only known what might happen…

The surgery went well, but when they removed the stitches, the wound opened up. They redid the stitches, and two weeks later, when removing them, it was obvious that the wound had pulled apart again. For the next 18 months, I endured many small surgeries to try to get my face to heal. I had numerous types of dressings tried, from manuka honey to silver dressings. All to no good. The face just deteriorated, and I ended up with metal showing through the face – part of my original rebuild, and then some cheekbone showed through.

This surgery took longer to recover from than the first one, but thanks to all the support from Stoke Hospital and my amazing family and friends being behind me, I am doing well. I have just had another small surgery to put a gold weight in my eyelid to help it close properly, and a brow lift to take some pressure off it.

So this is me after the surgery, and me today. My journey has been a long one and very challenging at times. I think it’s time I got off this rollercoaster ride now and had a go on the merry-go-round. I hope my story may help some people, and I’m always willing to chat.