‘It’s definitely not cancer’ – finding support after my tongue cancer diagnosis

As we look ahead to Mouth Cancer Action Month, Barbara Fountain discusses the story behind her tongue cancer diagnosis and how she was inspired to set up ‘Young Tongues’, a support group for other young people diagnosed with tongue cancer. 

In September 2019 I noticed an ulcer on the side of my tongue. I had never had an ulcer before, so didn’t know what one should feel like.

It was the burning sensation when eating chocolate that led me to see my dentist in early October, as usually this is the kind of thing I’d ignore for a while.

The dentist concluded that it was my teeth rubbing against my tongue, aggravating the ulcer and preventing it from healing.

‘He assured me it couldn’t be anything serious’

He filed down my teeth and booked me in for a follow up appointment a couple of weeks after.

I returned and nothing had changed. He filed my teeth down for a second time, but this time scheduling a follow up appointment for the following week.

Again, I returned with no improvement.

My dentist was very apologetic as he informed me that best practice dictates that he should refer me to the oral health department at my local hospital.

He assured me it couldn’t be anything serious as I didn’t fit any of the criteria, but it was better to be safe then sorry.

My first ENT appointment was in November. At the appointment, the doctor decided to give it another couple of weeks before making any decisions.

When I returned in December, the decision was made that I should go and have a biopsy which took place a week before Christmas.

‘One of the most painful experiences’

The biopsy, although necessary, was an unnecessarily traumatic experience.

Although I had local anaesthetic during the procedure, which isn’t pleasant and quite invasive, no further pain medication was prescribed for after the biopsy other than over the counter paracetamol and ibuprofen.

The shock of the local anaesthetic wearing off felt like a train had hit me in the face. I hauled in agony for four hours until I passed out and remained in extreme pain for another three days. I wasn’t able to eat for another nine days.

It was one of the most painful experiences of my whole treatment path. And it could have been been wholly avoided if I was provided with adequate pain relief.

The ENT taking my biopsy commented that he could see where my teeth were rubbing the ulcer and that it definitely wasn’t cancer.

Cancer wasn’t even on my mind when I returned on New Years Eve for my follow up appointment.

When I stepped into the room and met my consultant for the first time, he asked me what had inspired me to get this checked out.

I honestly thought he was going to tell me I was a hypochondriac. I didn’t expect him to say: ‘It’s a good job you did, because it isn’t good news. You have tongue cancer.’

Thank you to my dentist for following best practice, as this swift intervention meant I was diagnosed with stage one squamous cell carcinoma.

Although I had a partial glossectomy with forearm free flap and neck dissection, I am grateful I didn’t have to undergo chemo or radiation.

Creating Young Tongues

While waiting in the waiting rooms for my various hospital appointments, I noticed that nobody looked like me. I was surrounded by other people’s grandparents and great grandparents.

I often ended up stopping a fellow patient from wondering off confused or was myself mistaken for a member of staff.

In addition, I couldn’t research my cancer because all of the material available was based on an elderly population with outcomes that would be different to mine and thus absolutely fear inducing.

I couldn’t ask anyone if my scars, side effects or other worries I had were normal experiences.

Not only did this make me feel isolated, but also a bit of an alien that just didn’t quite belong. I also was told that I should be able to return to running my business after three to four months post-surgery.

When that didn’t happen because I was plagued by fatigue, secondary infections, and emotional exhaustion, I felt like an absolute failure.

On top of that, I had this perspective that I wasn’t a ‘real’ cancer patient. After all I only had surgery and, with that, struggled to find and accept the support I really needed.

Young Tongues New York meet up, April 2022

‘I still struggle’

Nearly four years later I’m still not earning a full wage, I still struggle with fatigue and I’m still working on my mental health.

I wish I had someone who had lived through it before to tell me that what was happening to me was a big, life-altering, traumatic event that would affect me for the rest of my life, both positively and negatively.

I wish someone had told me to grab every tiny bit of help – whether financial, practical or emotional – like my life depended on it. Because maybe I would need it and most likely at the least expected time.

During the pandemic, I found some fellow tongue cancer patients in my age group from the US on Instagram and connected with them.

I hosted a zoom meet-up and asked everyone I knew to invite anyone they knew who was young and had experienced tongue cancer.

We started off with 12 people and we are now a community of over 200!

We offer peer-to-peer support through our Facebook and several Whatsapp groups, we share practical resources across our social media platforms, and hold regular meet ups – virtual and in-person.

In addition, we have recently been awarded funding by the Mouth Cancer Foundation and are in the process of formally registering as a charity.

We would love to connect with dentists and clinicians to help us grow our network and join us as ambassadors!

To get in touch, contact [email protected].

Invaluable support

Louise Hutchings discovered the support group through Instagram before she had been diagnosed. The stories the Young Tongues shared gave her the confidence to get a biopsy.

‘I devoured every post for info on what was about to happen to me and, more importantly, the reality of how life was now for these people who had been diagnosed and treated for the same thing as me.

‘I started to follow several of the members at various stages of their cancer journey, which led me being invited to the private Facebook group and Whatsapp chat. These have been invaluable to me. I don’t feel alone; I feel part of a club that gets me and understands what I’m going through. I’m not sure what I would have done without it.

‘I felt elated when, during one of my radiotherapy reviews, one of the radiologists recommended the group to me, as she had come across it. It was great to hear a medical professional recommending it.

‘Another unexpected result is that it has brought me out of my shell.’

Stephanie Haberfield is also a tongue cancer survivor who has found great support through Young Tongues.

Young Tongues hadn’t quite come into being while I was going through surgery and treatment, but I’d already been in touch with quite a few of the early members.

‘Simply knowing that other people had been through similar experiences and emerged at the other end made such a difference to my outlook.’

Young Tongues Birmingham meet up, July 2022

‘A sense of self-worth’

Stephanie continues: ‘Since then, helping to “onboard” others who are looking for reassurance, or providing clear and pragmatic information about the likely procedures they will need to undergo, has also helped me look forward and give me a sense of self-worth.’

Louise also feels that she can now help other people who have been diagnosed. ‘We all have similar stories but have differences in how we were diagnosed and treated and we share our experiences with each other all the time.

‘Having a rare cancer at a young age is a very challenging thing to deal with, but Young Tongues has made elements of it so much easier.

‘We laugh together, we celebrate each others victories, we grieve together and we are there for each other whatever the time of day or night.

‘I am eternally grateful to Barbara for starting this group and all of the hard work she and the other administrators put in.’

For more information on Young Tongues, visit its website: www.youngtonguesglobal.com

You can also follow Young Tongues on Instagram @youngtonguesglobal

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