A tongue cancer survivor has described how running helped her to feel in control of her life during treatment.
Karen Liesching-Schroder, who ran a half marathon two weeks after finishing radiotherapy, said: “The fact that I could run all the way through really helped.”
Macmillan Cancer Support recently praised an NHS initiative to offer newly diagnosed cancer patients a “prehab” regime of three fitness sessions a week, saying it could help them to prepare both physically and mentally for treatment, reclaim a sense of control and improve their health in the long term.
Karen, 47, a school nursery nurse from Rochford, Essex, told the PA news agency: “Once you start it all, you have to attend all these appointments. You are not getting any say in it.
“You meet some amazing people but sometimes you are waiting around for that appointment and you can’t get on with anything.”
Karen, who had surgery then radiotherapy and had to stop driving while taking morphine, said she felt she was losing control of her own life. Preparing for the half marathon gave her a focus.
💙Mouth Cancer Awareness💙My appointment arrives for my radiotherapy mask fitting and now that Naomi knows about the…
“I had to have something like that, a focus, rather than it all be about cancer,” she said.
“I think a lot of people struggle with a cancer diagnosis if they haven’t got anything else to focus on.”
Southend Half Marathon is a special race for Karen and her running club Flyers Southend because they remember a friend who died after finishing and Karen said there was “no way” she could not take part.
Fellow runner Keith Passingham, who himself survived bowel cancer, helped Karen to prepare, liaised with the organisers and carried her medicine and protein shakes when they ran together on the day.
“We also had loads of people along the route who knew, so I could pull out if I needed to. But I knew I wouldn’t pull out,” said Karen, who was also supported by her electrician husband Ian, 61.
“Halfway through radiotherapy it was getting tough. The nurse said the symptoms get worse for two weeks after radiotherapy. I said ‘I’ll be fine, I’m doing it’.”
Karen took morphine before the race and even ran with the uncomfortable peg – nicknamed her “alien” – still in her stomach so she could be given drugs and protein shakes.
💙Mouth Cancer Awareness💙Picking myself up and moving onwards and upwards and tackling the next step on this journey was…
“I hadn’t run more than five miles. I didn’t take it seriously,” she said.
“We knew so many people on the course. We stopped for hugs and high fives. We were singing, having a right laugh.
“I kept saying I can’t believe I’m doing this.”
Karen added: “We made the most of every minute of it.
“I took something like three-and-a-half hours but didn’t feel it at all. I was in my element.
“I did collapse into Ian’s arms – but a happy collapse.
“I had proved a point and I felt on top of the world.”
Afterwards, Karen said she realised she “had probably overdone it” as the morphine wore off.
“The next day I was really sore but I didn’t really care,” she said.
“The Wednesday after I went back to hospital with my medal.”
Karen, who now supports others with cancer, said she associated mouth cancers with old men who smoked and drank until she was diagnosed after suffering for several months with what she thought was a painful ulcer.
The mum to daughter Naomi, 20, and son Drew, 15, said the diagnosis was a shock as she was a fit and healthy person who had never smoked and drank very little alcohol.
It was only when the pain became unbearable in October 2015 that Karen saw a nurse who told her ‘that’s not an ulcer, that’s a hole in your mouth’.
Karen saw a specialist in February 2016 and admitted she was in shock when she was told she had tongue cancer following a biopsy: “I always thought of it as being an old man’s disease.”
She shared a diary of her diagnosis, treatment and recovery on Facebook to encourage others to check their mouths, including a video of what her tongue looks likes following surgery.
“I put up that video of what I call my Loch Ness Monster. I was really nervous about seeing people afterwards,” she said.
💙Mouth Cancer Awareness 💙Life after surgery and radiotherapy…The posts from now on are all about this. Last year I posted photos of my tongue which actually weren’t that clear. Below is a video of what my tongue is like now. It took me a long time to get used to what my tongue looked like after surgery, it’s not pretty but this is my Lochness Monster as I have called it for over 3 years. I tried to time posting it so it wasn’t during a meal time. I will understand completely those who don’t want to see it (I didn’t for some time!) but I urge to to try because it will give you a better understanding of little old me 😊 Not everyone who has tongue cancer has surgery, they might have radiotherapy only, or chemo or both or all three. Each person is different as is their journey which is to be remembered…each person’s journey is personal to them. My Lochness Monster curls behind my teeth hence it’s name. This is what I have been left with, bear in mind I’m apprehensive posting this…
Posted by Karen L-s on Saturday, November 16, 2019
“I thought it wouldn’t hurt for people to see what I have in there now so they can see why I have battles with food and why sometimes my speech isn’t so clear.”
Karen’s limited tongue movement makes swallowing difficult so eating out can be challenging.
“I stopped getting invited. People were starting to feel awkward around me. I’m not easy to cook for or to cater for.
“I just accepted that was how it was.”
Karen said she felt “ostracised” and lost confidence but has been helped by speech therapy. One video shows her demonstrating the exercises she does regularly: “That’s like with running, if you want to get anywhere with it you have to keep doing it.”
💙Mouth Cancer Awareness 💙Life after surgery and radiotherapy…Speech therapy exercises. This exercise was to lick my…
She has also tried to stay positive and encourages others to do the same: “I have had so many silver linings – no tracheotomy, no skin grafts, no teeth removed, I didn’t have to have chemo. I was very lucky. I was looking out for silver linings.”
Surviving cancer has given her a different perspective on life which now has a slower pace and more time at home, she said.
Karen still runs but often stops to enjoy the moment or to take a picture: “You have got to stop and take these little moments in.”
Don't leave things to chance. Be proactive. If you notice anything unusual in or around the mouth, head and neck area, get yourself checked out by your #dentist or GP.https://t.co/ErrN6hwHTt pic.twitter.com/P5Lzwfanea
— Mouth Cancer Action (@mouthcancerorg) December 27, 2019
She urges people to check their mouths every month, looking out for ulcers, red or white patches and lumps: “Get a good look so you know what normal looks like.”
Pain, lumps in the neck or a persistent sore throat or cough should be checked out.
“If something just looks a bit revolting, check,” she added. “I don’t want anybody else to have to go through this.”