Lucy on learning to speak again after devastating diagnosis and baby loss

It was around Christmas when I went to see a dental hygienist, and they noticed a little white bump on my tongue.

I didn’t have any other symptoms, but the hygienist wasn’t happy about it, so I was referred to hospital for a biopsy. By the time I was given the results, the little bump had started growing into a significant tumour and had begun to spread. I was told it was stage 3 head and neck cancer, then the consultant said, ‘you’ve got months, not years’. I was 39 and five months pregnant.

I was told I needed radical surgery to remove the tumour from my tongue and the lymph nodes from my neck. It would take about 15 hours, and at the end of it, I might not be able to eat or speak again. I’d be given a feeding tube which I might be dependent on for the rest of my life.

On top of that, I was told, ‘the baby won’t survive the surgery, but you won’t survive the cancer’.

It was a devastating time and I wanted to stall everything so I could carry on with the pregnancy and maybe have an early delivery before my cancer surgery, but it just wasn’t possible.

There was so much to deal with, and I felt this fearful, anxious sort of chaotic energy from so many visits from worried family members. I knew that these could be my final days, so I wanted to be calm. I didn’t want frenzy and chaos at the end. I deliberately chose to be in a place of peace and lightness to give myself the best chance of surviving.

During that time, intense pain in my jaw caused by the tumour meant that I couldn’t sleep, so I’d get up really early and sit by the fireplace at home, light some lamps and drink a cup of tea. I remember thinking, ‘if I’m not going to survive this then I want these final days to be beautiful’. I thought a lot about my life and how I’d done so many of the things I wanted to do and how so much of it had been wonderful. I was just sort of blessing my life as it had been.

On my 40^th birthday my treatment started. I had to have a termination, which was devastating. Then, while I was still recovering, I went in for surgery.

I woke up after the surgery in intensive care with nine tubes in my body. I spent two weeks in hospital followed by six weeks of radiotherapy. I had staples right across my neck, and lymphedema gave me this enormous swollen head. My lips were chapped, my teeth were brown, I was drooling and I couldn’t smile because they’d cut through the nerves in my face.

At one point, a speech therapist came to see me with a little tub of custard and a baby spoon. She wanted to see if I could move my tongue and eat it. It was devastating, because all you can think is, ‘so this is what it’s come to’.

At every level, everything in my life collapsed.

It’s hard for anyone to lose the basic capacities to eat and speak but my job as an international civil servant meant I’d dedicated my whole career to travelling around the world and speaking different languages. I’d even written about a book about the power of language. So not being able to speak felt especially challenging.

For months, I saw a speech and language therapist who gave me drills to improve my speech. I practiced the sounds for two hours every day. But at the end of a week, a month, I still couldn’t make sounds properly. Not even the ‘s’ sound in my own name, Lucy.

Eventually, the therapist said it might be time for me to accept that I may never speak properly again and gave me a pen and board to write on. It was a bit disparaging, especially as when I wrote on the board, my mum and sister couldn’t even read my writing!

During that time, most of my friends just vanished. And I’m not talking about casual friends - these were people I'd put so much time and love into. Beloved friends didn’t even reply to my messages, and that really hurt. I think part of it is that people don't know what to say and they can’t deal with anything negative.

From the first moment I went through the door, I knew I was in a special place.

Feeling pretty beaten down, I finally went to Maggie’s after the speech and language therapist recommended I try a yoga class there to help ease my lymphedema. From the first moment I went through the door, I knew I was in a special place. It was a space filled with beauty, peace and pleasure.

I got talking to a lady from Maggie’s about what I’d been through and how I felt under pressure to get my life back to normal, even though I was exhausted. She gave me the best advice: ‘just rest’. She reminded me I’d been through major surgery and now I should rest, recover, regenerate and rehabilitate. Hearing that gave me new energy and determination, and I went home and told my husband, ‘I am going to learn to speak again’.   

At Maggie’s I joined the ‘Where Now?’ course for people dealing with life after cancer treatment. It sounded perfect for me because I thought, ‘well, that's the big question, isn’t it? Where do I go now?’

Going to the course was such a relief. I could finally talk to people, human to human, and it was soothing and energising and utterly delightful. There were nine of us in the group and there was an instant connection between us. We were all people who got it and were all facing the same challenge: to rebuild our lives.

At our first meeting we all introduced ourselves, but I was still learning to speak again, which could have been awkward. I told them, ‘you might not understand everything I'm saying so feel free to ask me to repeat myself.’ It was a gentle, loving space where I felt safe about sharing my experience, and I knew I wasn’t being judged.

I went from having a pretty harsh existence of swallowing exercises, speech drills, physiotherapy and medication, to coming to Maggie’s and doing yoga (well, lying around, stretching a bit and having a laugh) and learning to make healthy brownies with my new friends.

We had so much fun, and when serious things came up we could all share how we were feeling about it rather than someone dismissing it by saying, ‘don’t worry, it’ll be fine.’ We would speak about things that made us feel self-conscious. Some of the ladies had lost their hair, which is a real challenge to your sense of who you are in the world. It was very soothing to notice that other people were struggling with all sorts of things.

After the course ended, we stayed in touch every week and set up a WhatsApp group called ‘The Belters’. They’re all absolutely wonderful human beings and we’re always there for each other. One of the group is getting married soon, and we’ll all be there on the day. Our friendship is a phenomenal thing.

The change I felt after going to Maggie’s - emotional and physical - was immediate.

I started making real progress with my speech and the rest of my recovery. Maggie’s helped me build up my confidence, and despite being told I might not be able to speak properly again, I started to think that maybe I could achieve something different than what was expected. And I have. 

I’ve learnt that, in dark moments, you have to believe that, however unlikely, good things can come to pass. You can have moments when you feel good during a really tough time. And you can have a good quality of life on the other side of cancer.

Finding joy in life

Two years after the dental hygienist first noticed the bump on my tongue, I found out I was pregnant again. My husband and I are really delighted. I’ll be under close observation for cancer for a couple of years, and I go to the oncologist every three months, but other than that, all my appointments are about the baby.

Maggie’s has made it possible for me to achieve an extraordinary recovery. It has given me back aspects of my life that I thought I’d lost – my social life, my sense of self. Maggie’s is all about the enjoyment of things that give you peace and pleasure like relaxation, movement, tasty food, beautiful spaces and flowers, because they strengthen you.

Maggie’s is about friends who understand you and expert people who really get it. It’s about finding joy in life. 

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Our cancer support specialists, psychologists and benefits advisors are here for everyone with cancer, and all the people who love them. 

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