Finding a voice after throat cancer
Head and Neck Cancer
Stephen Christie vividly remembers last September 26; it was the last time he ate a meal, and it was ‘‘awesome’’.
But after dinner, Christie felt a ‘‘trickling’’ at the back of his throat.
‘‘I went to the bathroom [and up came] a big glob of blood,’’ Christie said.
Small drops of blood had been appearing in his saliva for several months prior, but it was just small amount, ‘‘like you’d scratched your gum or something’’.
He’d also noticed a small lump in the back of his throat but as it wasn’t particularly sore he hadn’t pushed the issue with his doctor, who had dismissed it.
When he did see an ear, nose, and throat specialist, however, cancer was found at the base of his tongue, caused by the human papillomavirus (HPV).
‘‘[People should] spend as much time thinking about cancer as they do thinking about winning the Lotto because you’re way more likely to get cancer,’’ Christie said.
Following extensive radio therapy, and the removal of some of his tongue, Christie has to feed himself through a tube in his stomach, as he works on being able to swallow again. The radio therapy has also changed his sense of taste, and his speech has been impaired.
‘‘I’m really worried about [getting back] the taste of things I used to like, Bluff oysters for example, and beer,’’ he said.
But first, he needs to learn to swallow again – which is still painful five months after his radiotherapy treatment finished.
‘‘I never thought I’d miss toast,’’ he said.
Christie said he strongly advocates for the HPV vaccination which, as of this year, is free for both boys and girls aged 12 to 26.
‘‘It’s not a ‘fooling around’ virus, it’s everybody,’’ Christie said of the virus, which affects four out of five people at some point in their lives.
Nelson Hospital Speech and Language Therapist Emma Burns, who has been working with Christie to improve his ability to swallow and speak, said people shouldn’t be ashamed to talk about the HPV virus.
‘‘Eighty percent of people carry it... with most of us, we carry it and our immune system deals with it,’’ Burns said.
But Burns sees the damage the virus can do – in some cases causing oro-pharyngeal and laryngeal cancers which require invasive surgery and ongoing radiation.
‘‘[Which] hopefully cures the cancer, but there are ongoing side effects from the treatment,’’ she said.
Appearance, swallowing, taste, breathing, speaking, sense of smell, and the condition of people’s teeth are all affected, with many needing their teeth removed prior to treatment.
Bernard Sanders had his teeth removed before he had treatment which involved not only radiation, but the removal of his larynx.
In Sanders case, the cancer on his voice box wasn’t caused by HPV; but nor was it caused by an unhealthy lifestyle often associated with throat cancers.
‘‘I was super fit, really in good condition, I didn’t smoke, I never drank,’’ he said.
Sanders, who has been a Commonwealth champion powerlifter, is now learning to speak again and create a new life, with the help of prosthetic vocal folds that create an artificial voice.
‘‘It’s never the same life, but it’s a life’’, Sanders said.
‘‘Socialising is so important... [but] people get embarrassed because of the way you talk, they’ll be very friendly for a while and then they’ll avoid you because it’s in the too-hard basket. The best thing you can do is smile. You smile and people are more attracted, so you make that effort.’’
Sanders, like Christie, underwent radiation which saw him strapped to a table under a heavy mask, moulded to fit his face. ‘‘It can be very scary … claustrophobia is not nice,’’ he said.
Sanders first had an inkling something wasn’t right with his throat after he noticed his voice changing.
For a year and a half his doctor dismissed it, however, until a new doctor thought it might be a throat infection. After two courses of antibiotics didn’t fix it, Sanders saw a specialist and was diagnosed with cancer.
Following his treatment he too has been working with Burns, learning how to talk with a ‘‘new’’ voice. His prosthetic vocal folds are changed every six weeks.
Burns has also set up a support group for throat cancer survivors in Nelson.
‘‘Speaking and eating are things that we all take for granted and are a massive part of life, socially, you know everything you do, be it going out for coffee with friends or to the pub or for a meal,’’ she said.
The group aimed to meet out in public and to build confidence, as many survivors felt self conscious about their change of appearance and voice.
Sanders said when people were curious about his roboticsounding voice, ‘‘I just tell them I’m the son of Darth Vader’’.
Sanders, Christie and Burns are all encouraging vaccination against HPV, and for people who have persistent sore throats, lumps, or unexplained changes to their voice to get it checked out.
‘‘People say ‘13 is way too young’ [for vaccination] but the point is you’ve got to do it before people are sexually active,’’ Burns said.
Sanders and Christie, meanwhile, are continuing to learn how to cope with their new circumstances.
‘‘You get sad initially at what you’ve lost, but then you try and build up a life,’’ Sanders said. ‘‘I’m back at the gym now, and I want to compete [at lifting] at least once next year.’’