Three things I know about Ignaty.
I met Ignaty at St.Thomas’ Hospital, in London. His story made me realise that with a pinch of luck and determination, you can amaze both your doctors and yourself and, finally, move forward.
Ignaty is a language trainer and the author of unconventional educational textbooks. Since 2013 he has run a company offering business consulting, language tuition, translation, market research and audio book publishing. Originally from St.Petersburg, Russia, he moved to London in 2008.
What is the story you would like to share?
In March 2015 I noticed something was wrong with my tongue; in June I was diagnosed with tongue and neck cancer. It is a rare type of cancer, about 1% of all cases. I felt my illness was very targeted – it ‘hit’ my tongue, which was my ‘working tool’. I have no other tools; even my pen is less important.
Cancer was a sign that something, somewhere, was wrong. This story now seems to me to be a turning point for me – at least I hope it will be, otherwise I cannot see why I got the cancer in the first place. I am trying to be a different person – this is a long process. I feel I need to reconsider my life and do things differently.
How did you find out you had cancer?
Last March I had a burning sensation as if I was drinking very hot tea – this lasted for several weeks. While I was brushing my teeth one day, I found a white ulcer under my tongue. This is not something you can see easily, you have to twist your tongue and check – I was lucky I saw it. I saw my GP at the end of May; she gave me some antibiotics for two weeks and afterwards she sent me for a biopsy at Guy’s Hospital. By the end of June I knew I had cancer.
I had no risk factors at all, though. If I remember rightly, 60 per cent of the victims of tongue cancer are smokers, and around 20 per cent are drinkers. I’ve never smoked, I’ve never been a drinker; I had no oncology history in my family; I used to walk five to ten miles a day — which is more than most people do. I wasn’t even registered with a GP, because I had no major health issues. I am also a vegetarian. I cannot say I had an unhealthy lifestyle. Cancer was quite unexpected.
How did you feel when you heard the news?
It was a weird reaction. I was on my own, seating in the waiting area working on my book. When the surgeon invited me in, he looked puzzled. I remember he said something like ‘Bad news’ – then I felt I couldn’t control a tear.
I already had other things going on in my life but not health-related. Some difficulties in my business and finances – it was already tough. When I heard the news I thought ‘Ok, great’. My thoughts were all about my work. My main concern was that I wouldn’t be able to teach again. How would I manage financially without work? I had no savings – I had loans and a mortgage. I would have to stop everything for about a year and a half. I am self-employed – if I cannot work, I do not work. Cancer was the ‘cherry on the cake’.
Did you ask for help?
I had enough support from friends – I was posting about my progress on Facebook. I was open about the problem straight away.
When we discussed your logo, you mentioned a couple of words like ‘luck’ and ‘determination’.
If you were a superhero, what would your powers be?
Good question – I do not know (laughing). People on Facebook tell me I am courageous, strong, determined and optimistic – I don’t necessarily feel that way, but many friends say so. I am sceptical about it (laughing).
I was very, very lucky. My tongue is my ‘working tool’. I wouldn’t be able to talk to you now if I hadn’t been treated at Guy’s Hospital – one of the best in Europe. I was in the care of a professor who uses an innovative method for tongue cancer – thanks to this I managed to preserve about two-thirds of my tongue. They only cut a slice from it and folded it into a nice shape so it looks like a smaller version of a normal tongue. Thus I can still speak and eat, though my speech is slightly affected.
Standard medical protocol indicated that I would lose a significant part of my tongue and all the lymph nodes in my neck straight away and then undergo radiotherapy. But I wouldn’t know how much of my tongue they would have to cut out until the day of the operation. The tongue is cut in slices – the worst-case scenario is that they would cut out most of it. Then they take skin from your arm and replace the tongue, so you can at least eat something. But it is not the same, because our tongue is a muscle, it is flexible, it makes nice sounds. When you replace it with skin you cannot have all these movements, your speech is affected, your taste, everything. You might not be able to talk again.
I decided to go with this professor’s innovative method because I wanted to preserve the most of my tongue and lymph nodes that I could. I was in the operating theatre two weeks after my diagnosis. During the seventh hour of my operation my doctor intuitively decided to make one more cut in the lower part of my neck, where he found another cancer . This wouldn’t have been found if it hadn’t been for him. The form and shape of my cancer was very unusual. It had also moved very quickly from my tongue to my neck – this usually takes several months, but apparently in my case it happened in just a couple of weeks.
Two weeks after my tongue operation I went back to the operating theatre and had surgery on my neck. I had 34 lymph nodes removed, and luckily they were all clear.
After all this, I went through six weeks of radiotherapy. It was hard for me to comprehend the idea of having radiation in my body. I refused to have chemotherapy all along. I wanted to kill the cancer but not myself. I wanted to have a proper, even if shorter, life afterwards.
As I keep repeating, I was very, very lucky. I recovered quite quickly after all this – my doctors were amazed. I am doing well now.
One thing I am proud of is that I finished my third book hours before I went into the operating theatre. I knew it would be difficult to record an audio version of my book after the tongue surgery as my pronunciation wouldn’t be clear enough to make audio books any more. So I had three weeks between the diagnosis and the operation to work on the final draft with my editor and record it. I recorded my last chapter the day before the first operation. I finished around 4.30 pm and the next morning at 8.00 am I was at the hospital, ready for surgery. It was a huge risk, since if my sound engineer had spotted an issue in the audio files, I would have had no chance to rectify it, ever.
I continued preparing the book for publishing with my editor and her team while I was in hospital. After the second operation I chose the cover with the help of one of the ward nurses. The day I left the hospital the first copy of my book arrived. I published this book so quickly, thanks to my diagnosis. I wouldn’t have done it without it – it’s usually a long process.
In terms of speech and pronunciation I know I have lost some sounds now, because I cannot use the tip of my tongue. In English it is less noticeable but in Russian it is obvious, and some of my students may get confused. I don’t want to feel I might be delivering work of a lower standard. I need to learn how to do it. I work with a speech therapist – I did lots of exercises. What you hear now is nothing like the way I sounded at first. I had no ‘s’, no ‘z’. I managed to get these back. Even the ‘th’ sounds I can do now, but I need to put in more effort. I hope I’ll get my sounds back.
If you were a Superhero, what would your vehicle be?
My camper van; it saved me. When I finished radiotherapy in mid-October, I was completely exhausted. I wanted to escape from all the problems. I took my camper van and went on a trip for 45 days — this was the longest holiday of my life. I had a change of scene, I forced myself to do some essential physical exercise, like taking the table out to prepare lunch. I couldn’t be lazy, the weather was cold, so I had to move around – there was no other choice. I had no internet, so I walked for about 12 hours a day. Thanks to this trip I can now move both my neck and my arm. My physiotherapist says I’ve done really well. It was a very therapeutic experience for both my mind and my body. And a rehearsal of how I wanted my new life to be. It was a good thing for me to see that life hasn’t stopped.
And what about your kryptonite — your weakness, let’s say?
I’d say my kryptonite is doubts. I have doubts about my past, present and future. About my lifestyle and career. About the cancer coming back. I need to stop worrying: I have too many thoughts and too much anxiety.
There is something else, as well: though I am not scared of dying, I wouldn’t like to be considered disabled. I remember thinking of all this before the operation and thought that even if I didn’t wake up after the anaesthetic, I wouldn’t mind. There were too many problems to deal with.
However, when I think of disability it scares me a lot. I don’t want to be disabled, and I don’t want to be considered disabled. I don’t have a mobility problem: I want to move on with my life, to keep going. But the law states that from now on, when I apply for a job I will have to tick the box that says I have a disability. How is that helpful in any way?
Presenting one of my books, wearing a yellow scarf like the main character in my book (The European Bookshop, London, 2013)
How does your life look like now?
I saw cancer as a sign that I needed to change something in my life. When you see the statistics of the survival rates, you’ll understand that changing the mindset is important. I am focusing on changing my whole lifestyle: food, exercise routine and stress levels. I’m having cold morning showers and I switched to organic food, which is more expensive but better quality. I am hoping to become a vegan. I don’t eat as many sweets and I have a healthier weight. I invested in a good juicer. I drink a lot of water because I cannot produce much saliva. So, I invest in good quality mineral water and use it for tea, soup or to boil pasta. I feel I’m doing something good for myself.
I used to wear more brown and grey – now I wear brighter jumpers, red and orange. I feel I want to be different now, different from who I was and from everyone else.
I must say that I’m still struggling with all this myself. But I’m grateful I’m still alive and I am trying to learn to spend less time worrying about small things, as I did in the past. At this stage I don’t want to own anything – I’m even selling my flat to get rid of the debts. I’m only keeping my camper van because it helps me escape from the city at weekends. I need to think about my retirement, if I make it till then, but do not want to compromise my life.Though I haven’t understood properly what happened, to me cancer is only one of many diseases. Trickier than other diseases it may be, of course, but it’s still just a disease.
What is the message you would like to send to people?
A first message would be to never underestimate your good luck: for instance, among cancer patients I was one of the luckiest. I got the best possible option for treatment. Try to stay optimistic.
Also, do something meaningful in life – I am interested in charity work, for example. I hope to volunteer for Macmillan [Cancer Support] at some point. If I set up a new business myself, I’d like it to be a social enterprise.
And finally, try to see the bigger picture: I was initially worried about work, but now I’m starting to think differently: there are more important things in life; and work – well, work will come.
All views belong to the individuals featured in London Superheroes. Photographs are from Ignaty’s personal archive.