Event concept designer Barbara Reed was diagnosed with tongue cancer on New Year’s Eve, 2018, at the age of 31. After a challenging 2019 and 2020 she is in a place where she has just launched a global support group called Young Tongues. In her own words, here’s her story
I’ve been really blessed that I’ve had quite an adventurous life so far. I’m originally from Switzerland – I’m dual national – and when I turned 20 I packed my bags and came to the UK just by myself because I’m a bit of a rebel. I ended up in Norwich by chance and love it here hence I’m still here 12 years later. I think I’ve always been very ambitious. I ended up studying event management and while studying I worked for the Champions League and international charity events – I basically knocked on all the doors I could, to work as a runner. I volunteered at all the festivals to gain experience.
After a few jobs it became really clear that I’m definitely destined to be self-employed as I get bored quite easily – I always have to have three or four projects going. I find that one project inspires and feeds off the other.
I’ve been with my partner, a Norwich boy, for coming up to nine years and we are season ticket holders at Norwich City. I’ve got a big group of friends and am properly embedded in Norwich life.
The year 2018 was the best year. My business, Breed Events, was really getting traction. I also started a project called the Good Egg Entrepreneurs, where I was trying to get local businesses together for a young way of networking: no suits, no handshakes but full of cocktails, music and lots of fun.
My partner and I went travelling across Europe and he popped the question – which was about time – and we were having a brilliant time. I’d lost loads of weight and I was fit.
Then, on New Year’s Eve, I got told that I had tongue cancer. One of my first questions was ‘can I have a drink tonight?’
It was completely unexpected, as I had been told before that it was not cancer. Tongue cancer is fairly common at end of life, but I was 31 – and to get it at that age is rare.
What’s even more rare was that they picked it up really early and the main reason for that was because I’m Swiss and I eat Lindt chocolate – but it felt like it was burning and I wasn’t having any of it.
I got fast-tracked and they caught it in stage one. The general knowledge about tongue cancer in young patients is not well known.
The year 2019 was a bit harder. I had my operation on the February 7 and had part of my tongue removed and replaced with part of my arm to plug the gap. They then took part of my leg to patch this up – so it’s been like a bit of a carousel.
I wasn’t very mobile for a long time and was tube fed. They had to take out lots of lymph nodes – they call it a neck dissection.
I was very lucky because it had only spread to one lymph node. It’s an aggressive type of cancer but when it only spreads to one you make the decision about radiotherapy – and radiotherapy into the mouth leaves you with long term implications.
I was told before the surgery that I might not be able to talk and would most definitely have a speech impediment. I just woke up and talked and didn’t shut up for two days! Again, I was very lucky.
The year was spent very much just concentrating on recovering. I had really bad fatigue after a 12-hour operation and my body had been through quite a bit.
I continued working throughout on small projects and the Good Egg kept going, plus I did a couple of trade shows.
In the Autumn I noticed I was getting easily overwhelmed and having really extreme reactions to certain situations, such as if there was something on TV like Line of Duty, for example – I completely freaked out. There were certain situations in the hospital I found it hard to cope and it was then that PTSD started to be mentioned. It became really evident that I was really struggling.
Even though I had the best possible outcome it has taken me a lot longer to recover because of the mental health implications.
Then it was 2020 and it all went mad! I had just been admitted to the Wellbeing Service so I was just starting getting treatment and then the pandemic hit.
At the beginning I personally coped quite well with it mostly because I had been in a type of lockdown so I had that experienced that isolation already.
I remember everyone was freaking out and I was like ‘guys, calm down, it’s fine – we’ll just stay at home for a bit – it’s really not that bad’.
The big silver lining for me was that my other half was now working from home, so I wasn’t as lonely anymore – it was lovely.
I opted to not have radiotherapy, but every six weeks I needed to be checked out – a case of watch and wait. I was really lucky as they were able to keep all the appointments and the Wellbeing Service continued online. There was never a compromise in the service I received from the Norfolk and Norwich Hospital, which was really important because that’s where the anxiety was the highest.
The check-ups will probably going to go on for another few years but are less now – every three months – and hopefully will be even less as we progress.
The pandemic has been an awful situation for everyone involved and for my entire industry as an event manager. It was hard to see other people struggling, but I had a few things on my side. My company had gone through the same thing the year before and we were on survival mode. It’s a miracle really but it has survived the cancer and the pandemic. We are still here and we are still going!
With everything else slowing down around me, it has allowed me not to rush and I don’t think I ever realised how toxic the rushing is.
In events you’re constantly in a rush, there are deadlines and everything is last minute. You are always under pressure to outdo what you’ve done before and to try to be better than everyone else.
But I have been able to just focus on me and my development and what’s important to me. That should be seen as a real blessing.
On the flip side I’m one of those unlucky one million people that fell through the net, financially. My benefits for the cancer came to an end because I was restarting my business then the pandemic happened, so I wasn’t entitled to furlough/any grants because I’d already downscaled – I didn’t have an office. This is one thing that has been a struggle for me throughout. I got diagnosed with a really dangerous disease that is life changing (and it has changed me) but the system continually tells me that I’m not quite sick enough. As cancer treatment progresses this is a real friction point: the support for people who are doing quite well after diagnosis are not getting the support they need to get better quicker. When you have to start to worry about finances it takes it out of you the stress.
Every time there was an announcement I thought ‘there will be something for me’, but there was nothing. That was emotionally exhausting.
At one point I had to say ‘stop, I’m not entitled, let’s draw a line under it. I’m just going to focus on getting back on my feet and getting back to work’.
I’m an event concept designer so that’s my bread and butter and I sort of call it my craft as a I love doing it.
But it was only a matter of time when I was going to start thinking ‘what can I do for people like me and also where can I find other people who get what I’m going through?’
We have general cancer support groups which have been great. I went to a support group for mouth head and neck cancer but someone who is retired is not going to understand career ambitions or having a family or having to deal with your parents. As lovely as it is it wasn’t ticking all the boxes.
Thank goodness for Instagram! I found someone in America – Steph in Baltimore – going through the same thing around the same as me. She was my only contact. Then she found someone else then that person found someone else and I thought, ‘actually there’s quite a few of us’, so I put together a Survey Monkey. Within four days I had 50 people, I thought ‘this is mad – there are more people out there than I thought’. Everyone was keen on meeting and when we had our first meet up it was so great and such a laugh. We could all compare scars and talk about the pain we get in our hands or the swelling we get in our face, saying ‘have you tried this/have you tried that?’
We set up a WhatsApp group, with new people joining all the time. For me, the most powerful thing is that we have six people who are going through treatment right now and they are able to send a WhatsApp at any time of the day or night and there will always be someone there. We’ve got people in Australia, America, Tel Aviv, Romania and the UK. Also, because we all have different experiences and are at different stages, we can offer different types of insight. We have mums, dads, single people… We had a chat about kissing the other day. Some people who have had complete tongue removal, so how does that work? Things you don’t talk about to your oncologist you are happy to talk about with other people who get it.
There’s one girl who went into surgery and before she went, everyone was like ‘make sure they give you laxatives.’ I wish someone had told me that! It’s that insider knowledge.
Young Tongues has been really empowering and I really love it. There is the demand there because I’ve been flat out all week, since launching. I keep getting asked, ‘can we have more meet ups? Can we have a website.’
I’m building it now – it’s nearly done. I’m just so grateful that this opportunity has found me or maybe I found it and made this happen.
Eleven people have joined to become official team members and do different things – because I do still have a business to run! Plus I’m organising the wedding, in August, at the Great Hospital – we’re keeping it local.
I just hope Young Tongues will take off and find a way to sustain itself. I’ve been asked ‘are you a charity?’ and I do have a feeling that’s the direction it probably will go.
We will be looking for advice on how to become a charity, but one of the great things about being virtual is that you don’t need that many funds – it’s just digital maintenance.
Something I shared in a speech I did for the Good Egg, the first Christmas after the diagnosis, was that I made a point of saying I’m never going back to normal. I didn’t realise how relevant it would become for everyone in that room.
Being diagnosed with an illness and contending with my own mortality, I made sure my other half had all the passwords and letters ready for the worst case scenario.
I don’t want to fall back into being a busy bee and just going stuff for the sake of doing them. I’m much more concentrating the limited energy I have on something I really care about.