A former broadcaster’s battle to be heard after tongue cancer.
I had a very clear focus on the day I found out I had cancer – just get rid of the cancer! It was as simple as that for me.
When the surgeon served up his brutal diagnosis the world stood still, as I’m sure it does for everyone, but there is one thing I remember very clearly – I have a 12 year old boy at home who needs his mother so I don’t care what you need to do to me, or how many scars I may be left with, you have to get rid of the cancer!
I’m a single parent, a wonderful life choice I made at 40 and I wasn’t about to let cancer get in the way of me watching my incredible child grow and thrive in the world. So for the next one and a half years, that was all I focused on.
So, I’m pleased to say that two and a half years on, a bit of life-changing surgery and 30 zaps of radiation, I am cancer free! Job done right? One would think so, but the second half of my journey is still unfolding.
A game of two halves
Since walking out of Auckland Hospital in September 2023, I have been facing the confronting reality that I may never be able to speak clearly again.
Now I know I could be sounding a bit contradictory here: I said my focus was all about getting rid of the cancer and it didn’t matter what else had to happen to achieve that goal. I realise now I had been so focused on beating the cancer, I hadn’t clearly thought through the full impact of this life-changing surgery and how it might affect something that has always been a core part of my identity (as well as my livelihood) – my voice!
Ok, I wasn’t completely oblivious to the fact that losing half my tongue might have an impact on how I sound and I did record video and audio messages for my son in the days leading up to the surgery but, looking back on the brief two weeks I had to prepare, the videos were more about reassuring my son that I would be ok and making sure he could hear my voice on the days ahead when I knew I wouldn’t be able to speak at all. I needed to give him hope and reassurance that all would be ok in his world once this surgery was over. I wasn’t necessarily going through all of that because I thought I might not sound like me again!
So let me put I this all into further context…my voice was for many years my trade and was still a critical part of my professional success. I am a former BBC broadcaster! For 10 years in the 2000’s I was privileged to present the sports news and cover incredible international sporting events for the BBC World Service. Broadcasting (therefore my voice) had been my life since leaving school. I started in local radio in Hawke’s Bay when I was just 17, had three and a half years at Radio NZ honing my skills before landing my dream job at the BBC. I had to pinch myself that a girl from Paraparaumu (they didn’t know how to pronounce that at the BBC) could be presenting to a global audience and meeting some of the world’s biggest sports stars. I felt truly blessed.
A change in direction
In 2007 when the BBC announced it was moving its sports operations to Manchester, I decided it might be time to diversify – I was battling a worsening eye condition and it’s tricky being a sports presenter when you can no longer see the difference between a leg-before and a caught-behind (cricketing terms for those who don’t follow the game).
For the last almost 20 years I’ve been working in various marketing, PR and communications roles, a couple of stints on FIFA World Cups, including a truly memorable year in Africa in 2010, an Olympic Games in London and for the last 10 years working in senior public sector roles in NZ. Ok so I’m not broadcasting anymore but the necessity to be heard, especially when you’re advising senior leaders, is still an integral part of my professional life. I’ll come to where that’s ended up shortly but a little bit about what many people with tongue cancer endure first…
It was 12 months after struggling with persistent ulcers on my tongue that I was given my grim diagnosis, and a swift two weeks before I was in hospital having lengthy (8 hours) surgery to remove the diseased part of my tongue. It’s pleasing to see how the health system steps up when it’s that critical. At 52 I was considered young (one positive from that experience I guess) but that meant the cancer was aggressive so there was no time to lose.
Let the battle commence
The next two weeks (for most) were grueling, there’s no sugar coating that. Confronted by the multitude of tubes coming out of seemingly every crevasse in my body, managing pain through the click of a button and learning how to communicate without my voice became the daily focus. It was hard, but at the same time I got to know some of the most compassionate nursing team ever put on this earth and found some comfort in hearing their life stories! There were more dark, terrifying moments than perhaps a positive thinker like me had planned for. Tracheostomies, I discovered, can be tricky little suckers and so was the hideous amount of mucus you need to suck out of said “trachy” ALL THE TIME in order to ensure you could breathe. It all sounds a bit scary I know but you’re on a high dependency ward for all those reasons, so you’ve got immediate care if things do get hard to handle! I had the best care and the most amazing friends and family who gave me the strength and love to get through – and my constant motivation was there every day with the same loving smile and careful hug to ensure I got through every day (pictured). The most special of all days was to see the beaming smile and happy tear-filled eyes when he heard my frail voice again for the first time.
A few other things I did to help along the way. I downloaded podcasts to take my mind off it all (BBC documentaries of course!), I made sure TVNZ+ and RNZ apps were up and running on my device so I could keep up with world affairs and I had a decent sized white board, which I wrote on ferociously so I could still be ‘heard’! Some may have suggested (and I won’t name names) that it was a blessing I couldn’t talk for a while! I suspect the poor registrars tasked with having to deal with me were probably thinking the same but I was determined to be well-informed and it’s flipping hard to advocate for yourself when your voice has been taken away.
Different roads to recovery
I do want to acknowledge here, before I go on, everyone’s experience and journey will be different and our ability to manage this experience can vary hugely both physically and mentally.
As a former sports person (I played both rugby and football), I am pretty determined and I knew what I had to do to stay fit and healthy to prepare for my journey. After the surgery I set about doing everything I could to recover well and prepare myself for the next stage. I drank a home-made green smoothie every day knowing my body needed good nutrients to get through the impending rounds of radiation. I was diligent about my physio, scar management (I highly recommend silicone strips) and I learnt a lot about what flavours and textures go well when blended! Whoever thought pureed food could be both tasty and fun?! Actually, I’m not going to lie, they’re not the best culinary experience I’ve ever had but they are a reality of life for some time after this type of surgery. I added the meal-replacement drinks they gave me to my morning coffee (vanilla is best) and I kept up a bit of exercise every day even if it was only a short walk. I should add at this point, I was working for the health sector at the time so I had incredibly supportive employers who allowed me the time to get well.
Just when you thought it was all over
So I did the hard yards of recovery at home, felt like I might just be returning to some kind of albeit strange-sounding new normal, and then comes the next enthralling (?) chapter, ‘the therapies’ – I couldn’t have chemo so six weeks of radiation was to be my cancer-busting weapon of choice. This was no fun game of combat sport though, the reality is, the next six weeks are pretty brutal and you do need to have your game face on.
I definitely wasn’t as prepared as I could have been on day one – ‘mask fitting’! I turned up, on my own, thinking this would be akin to some form of COVID-like PPE, how foolish was I? So I would say, if you have even the slightest bit of claustrophobia, make sure you have a loved one with you on this day. Think Silence of the Lambs and multiply it by 10! This is a plastic mesh-type mask that is moulded over your face and neck (depending on where you need to be zapped) which is then clipped into the metal table you will lie on for your treatment – it’s no walk in the park! All I can say is thank God for the radiotherapists, the great friend who taught me breathing exercises and the various football shirts I wore of my son’s to give me courage! (see photo).
They will tell you that you’ll feel worse as your radiation treatment continues – “it’s a cumulative effect”. I guess I managed to get through it by sheer bloody-mindedness and with careful pain management (I kept a log book of what I took and when) and using all the recommended products to manage the inevitable burning. I guess I’ll never know if the work I put in before helped or not but I obviously did better than expected because I never needed the nasty feeding tube they put in my stomach in case I couldn’t swallow. I was back on a liquid diet though for a while!
The second half
So there was no roast turkey or braised ribs on the bbq for me that Christmas. The radiation ended early in December, I guzzled my way through a few litres of Fortisip for a couple of weeks, managed some soft food over the festive break and a month later I was back to work – someone needed to pay the bills! But this is really when ‘the voice’ thing I mentioned earlier started to come into sharp focus.
My colleagues were kind and reassuring as I tried my best to clearly articulate myself in the many meetings and events that followed over the next few months. I found myself apologising and covering my mouth in embarrassment as I spoke worried I was also now prone to spitting, despite losing half my saliva glands! I missed out on a promotion, a role that should have been mine but I had garbled my way through the interview, still feeling the effects of radiation fatigue. It all started to impact on my confidence – when you’re usually the person called on to give clear, time critical advice in times of crisis or reputational risk but you feel you can’t talk clearly, you can’t help but question whether you’re still capable of doing such a high pressure role. So, when voluntary redundancy was offered in yet another round of restructuring, I bowed out gracefully to refresh and rethink.
One thing cancer teaches you is life can be far too short to just let it pass you by. I promised my son that when I was through the worst of it, we would have a fantastic holiday and so that’s what we did – a year long holiday which unsurprisingly featured a bit of sport! LA for the Lakers, the Rafa Nadal Academy in Majorca, matches at his beloved Tottenham Hotspur (again a huge thank you to incredible friends), and a day in the members lounge at Wimbledon – we felt fortunate for the first time in many months.
We settled in the beautiful seaside town of St Ives in Cornwall where we have family, and before you all think I’m an irresponsible parent – I did put my son into the local school! The stunning coastline, the healing swims in the (albeit pretty darn chilly) waves and long walks with the family dog were just the tonic for us both after two traumatic years.
You will not take my voice
We’re back in Aotearoa now and, while I’m refreshed, fit and well, I’m still a bit plagued by my new heavily lisped vocals. I’m determined to make it work for me though – while I wait for a bit of nip and tuck surgery to improve the shape of my designer tongue, I’ve found a new outlet for my dodgy dulcets – as an advocate for others going through this journey!
I want to speak for those who can’t as I know there will be many others far worse off than me. It’s wrong that there is not enough known about these cancers, the symptoms and the critical timing of early detection or the often harrowing and life-changing outcomes for so many.
We also have the opportunity to do so much more as a country to prevent these types of cancers. Over 70 percent of all head and neck cancers are now caused by HPV – mine wasn’t, but I wouldn’t want anyone I care about to go through this, so we need to push harder for vaccinations to ensure our young people are protected – it’s a no brainer. If people think their kids are not going to ever have oral sex in their lives so will therefore be ok, they’re living in La La Land!
So, they’ve taken half my tongue but they certainly will not take away my voice or dampen my spirit and I hope others going through this journey can find some inspiration and encouragement from my tale. Good luck and Kia Kaha!
