Biting into a square of her favourite chocolate, Barbara Reed felt a tingle at the back of the tongue.
She noticed a tiny mouth ulcer – something she’d never really had before.
Born in Switzerland but now living in Norfolk, Barbara loved the creamy sweet treat so didn’t want to miss out and she went to a pharmacist for some advice.
Despite over-the-counter treatments, followed by advice from her dentist, followed by a hospital referral, the ulcer never went away.
At just 31, Barbara assumed it was just stress as she was busy running her business Breed Events Ltd and organising her upcoming wedding.
But shockingly, about three months after first noticing the tiny 5mm ulcer, she was told she had tongue cancer, which was treated by having a quarter of her tongue removed and then rebuilt using pieces of her arm.
Barbara, now 33, tells Metro.co.uk: ‘I noticed the ulcer but was sure it was just a minor thing. They’re really common. I didn’t want to make a fuss.
‘It was tiny and the pain was quite sharp when I was eating sometimes but you could easily ignore it – I never thought it would be cancer.’
When she first found the ulcer, she went to a family friend who worked as a pharmacist.
A few weeks later, she returned and the friend recommended seeing a dentist, who told her it looked like two of her teeth were rubbing on the ulcer, preventing it from healing.
After having some of her teeth filed down, she was told to return two weeks after that, but again, the ulcer didn’t get any better.
She says: ‘They were actually really apologetic at the dentist because it really looked like nothing but they said it was protocol to refer me to the hospital.
‘I went to the Norfolk and Norwich hospital and the doctor there wasn’t sure either. She said she would see me again in another few weeks.
‘Eventually, as it hadn’t gone away, they decided to do a biopsy to see what it was, which was done in mid December.’
Due to get the results on 31 December, once the swelling from the biopsy went down Barbara enjoyed Christmas, not giving too much thought to the upcoming hospital appointment.
When the day came, she attended with her fiancé Nick Fountain.
She said: ‘I was actually really relaxed about the appointment. My partner and I were even dozing off a bit as we were in the waiting room because we really didn’t think this was going to be anything sinister.
‘I went into the room and there were five people there and I thought that was a bit excessive.
Symptoms of mouth cancer
The symptoms of mouth cancer include:
- mouth ulcers that are painful and do not heal within several weeks
- unexplained, persistent lumps in the mouth or the neck that do not go away
- unexplained loose teeth or sockets that do not heal after extractions
- unexplained, persistent numbness or an odd feeling on the lip or tongue
- sometimes, white or red patches on the lining of the mouth or tongue These can be early signs of cancer, so they should also be checked
- changes in speech, such as a lisp
‘The oral health consultant and surgeon started asking me questions about why I’d decided to get it checked out and eventually he just said: “It’s a really good job you did because it’s bad news – you have cancer.”’
She had MRI and CT scans, blood tests and x-rays and surgery to remove the tumour was then scheduled for 7 February 2019.
The huge 12-hour operation meant removing about 2cm by 3cm of tongue at the back, as well as some glands and lymph nodes in her neck as a precaution.
They then cut along her arm to remove some of the fat and tissue for her new tongue and an artery to create a transplant.
They then took skin from her leg to create a graft for her arm. Barbara was warned that as each person’s tongue is unique, there was no way to tell what impact the surgery would have on her speech and ability to eat.
She says: ‘I am really chatty and public speaking is a part of my work so talking is a huge part of my identity. The risks were a big thing to come to terms with but this was the best treatment.
‘My medical team were amazing and I felt taken care of. I trusted them completely.’
Luckily, when she came round from the surgery, she was immediately able to speak and has not needed any speech therapy.
Although the operation was successful, there has been a long-term impact on her life.
She says: ‘That part of my tongue is lame and sometimes food will get stuck. I don’t really like people watching me eating as sometimes it involves sticking my fingers in my mouth.
‘It took a long time for recovery in my arm. It had a big impact on the movement in my arm but hopefully, over time, the skin will loosen and it will improve.
‘In the grand scheme of things, I do feel like I had a lucky escape. When they took the cancer out, they analysed it and they found that it was a spider tumour, which spreads quickly and is very aggressive.
‘I was very lucky to find it when it was a matter of months old.’
The results showed that there was a small amount of spread into a lymph node and she was given the option of radiotherapy or to take a watch and wait approach with check ups every six weeks.
Barbara says: ‘Radiotherapy onto the tongue comes with a lot of risks and I felt that as I have beaten the odds to retain my speech the first time, I might not do that again. I decided to go for the check ups.
‘It’s been a year and a half now and the odds of something still being there are low.’
But living with cancer and going through treatment has affected her mental health and she was diagnosed with post traumatic stress disorder earlier this year.
She said: ‘That has been difficult because there has been help available for anything physical but not as much for the mental aspects. I have had funded therapy, which started just before lockdown and I have progressed quite well.
‘The problem now is that I have two sessions left and then the funding stops but I feel I need to continue with it.’
One of the things that surprised her most was the lack of support for self-employed people going through treatment for cancer.
‘I have been encouraged by schemes to go and be an entrepreneur, to create opportunities for myself and others,’ she told us.
‘I know that most people who take those risks won’t end up with a cancer diagnosis, but as I’m navigating my way back to a life after cancer, there is just very little support.
‘I knew that once I was well, I would continue to drive my business forward. I may have had cancer, but I am still of value and have something to offer. But I need the right support to get there.
‘It feels like I am being punished for being ambitious, having a positive outlook and enough grit between my teeth to push through pain both physically and mentally in order to function.
‘Only because I look fine, doesn’t mean I don’t need help.’
Barbara was just about to return to work when the coronavirus pandemic hit and she admits it has been a real financial struggle.
She says: ‘I was just starting back and then all my work disappeared due to Covid. It was a blessing in disguise looking back because I didn’t realise how bad the PTSD was at that point but I’ve fallen through the cracks for every Covid measure and financially, that is really hard.
‘I hope one day I have the energy and resources to influence change for self-employed people experiencing hardship.
‘I know that we are luckier than some – we still have a roof over our head and food to eat – but I feel like we are in such a vulnerable situation right now. One more crisis would just leave us in a precarious financial position.’
Barbara now posts about her journey, her work and the support she received from charities such as Shine throughout her journey on her Instagram account @adventurelovingbabs.
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