Karen, 51, lives in Essex with her husband Ian and their son, with their daughter and her partner close by. Karen is a keen runner and worked as a nursery assistant but left at the beginning of 2024 because of late effects caused by cancer treatment.
How was your cancer diagnosed?
I had a stubborn ulcer on the side of my tongue 8 years ago and I went to see my nurse at my GP surgery who asked a GP to refer me to the hospital. The referral never went through, so after advice from my dentist I chased it up and managed to get a cancellation for a biopsy. I was called in for the results to discover I had tongue cancer.
What treatment did you have or are you having?
After the shock of being told I had tongue cancer, I had surgery to remove the side of my tongue and a neck dissection. It was decided that I should have radiotherapy because I had had a stubborn ulcer about 16 months prior to this in exactly the same spot which had been biopsied and came back as negative. It was decided that we should play it safe in case it returned and have radiotherapy to ensure no reoccurrence. I also had to have a Percutaneous endoscopic gastrostomy (PEG) fitted into my tummy. I had 6 weeks of radiotherapy which was every day except for weekends.
What was your experience of radiotherapy?
Personally, I found radiotherapy tough. I had a closed faced mask (although the eyes were cut out for me) and I had a mouthpiece inserted before the mask was put in place. I found it very claustrophobic, but my radiotherapy team were fantastic and full of compassion and never rushed me. They would give me stress balls to hold while they put the mouthpiece in place and then fixed the mask on me and clamped me into the machine. I began feeling the beginning of discomfort and pain after my third session and was very honest with my Cancer Nurse Specialist (CNS) and she kept on top of my pain relief all the way through which was really important during this time. I had a PEG fitted into my tummy before I started radiotherapy and although it took a bit of getting used to, it really helped with nutrition and for having my liquid medication. Although my head and neck area couldn’t move in the machine, my legs could, so I used my radiotherapy sessions as training for a run and to distract me while in the machine and I found this to be a welcome distraction.
Did you have any side effects or late effects?
I did have side effects during radiotherapy. I suffered with mouth pain, a dry mouth, difficulty opening my mouth wide enough for the mouthpiece to go in, recurring oral thrush, and the thick mucous or phlegm that we are told about. I was very honest with my CNS about everything in order to get as much help throughout; which was in the form of medication, access to a nebuliser for the mucous, and I listened to my body with everything that was going on.
After five years of being cancer free, I began suffering from late effects and unfortunately there isn’t enough knowledge around late effects with some head and neck cancer professionals. My dry mouth got worse, I started to have issues with Burning Mouth Syndrome, I developed Dysplasia in my cheek because of the radiotherapy and I started experiencing nerve pain in my tongue. These are the most problematic ones for me currently; there are others; it is learning to adapt to all the new ‘normals’ as they occur.
What helped or helps you cope with cancer?
I was a runner at the time of my diagnosis; cancer can be very controlling in our lives taking over all the focus, so I tried to take the focus away by continuing to run. I ran the night before my surgery, then had to wait and heal for a few weeks before I could do gentle short runs, and then I ran all through radiotherapy as a means of escapism and freedom and looked upon it as a training run.
Being around good friends is a great help and I had a lovely network of supportive friends around myself and my family.
What did you or do you find hard?
I found social situations hard, as everything is around food, drink and talking and when you have trouble with all these things it makes socialising much harder. I still struggle now with this and when I go out, it is usually only in a small group and not in a noisy environment. It takes a lot of planning when eating out. I found it helpful to have coping strategies and be very honest with the people I went out with about what worked for me and what didn’t.
I found people expected you to be fine, especially after five years of being cancer free and it doesn’t work like that for a lot of people like me. I make the best of life as much as possible.
How are you now?
I am eight and a half years cancer free which is amazing and I am very grateful. I will be honest though; the late effects have had a huge impact on my daily life and on my family. I had to leave my job in education at the beginning of this year (2024) and since then have been busy being a Patient Ambassador for the Mouth Cancer Foundation. I run two types of support for patients and family members: The Mouth Cancer Foundation Support Group on Facebook which is a private group growing fast, and I co-host a weekly zoom support meeting with Jocelyn Harding, Dental Hygienist, for patients and family members throughout the year. I am part of the Patient Engagement Group for Radiotherapy UK and I am a member of Oracle Voices Head and Neck Cancer Charity UK. I am also working at educating professionals nationwide regarding issues with late effects of head and neck cancer and trying to get a late effects clinic set up at my local hospital. When the opportunity arises I happily speak up in public about mouth cancer and the struggles us patients have to live with. I am a very positive person with a speech impaired voice, but it doesn’t stop me advocating for patients like me.
Do you have any advice or messages for others?
My message for others is to always look for silver linings. I did this, sometimes they were only small but it is a start; being positive through this medical pathway is so important. Have a support network and if you haven’t got one, then reach out to support groups because I have found these to be incredibly important in moving forward in my life. It really helps talking to others who have gone through the same or similar to you and you can learn from each other. If you can’t find a local one near you there are plenty online and all so helpful. Always listen to your body, you know it better than anyone and if something doesn’t feel right, you need to be persistent in talking to your team. If you don’t understand what is being said to you, tell them, because it is important you understand what is happening to you, and I would always say take someone with you to the appointments so they can take the information in as well. Take a notebook so you can make notes. And remember that support is out there should you need it.
