A brave father has spoken candidly on how the aftermath of his throat cancer treatment impacted his family during the Christmas holidays.
Alan Johnston, 55, said he is still feeling the effects almost four years on from his harsh treatment, which included 30 treatments of radiotherapy and two chemotherapy infusions.
Recalling his first Christmas post treatment, Alan, who is supported by the Throat Cancer Foundation, said: “I had a Naso-gastric tube for eight weeks which got high calorie drinks into my stomach. I could not eat due to the pain and choking.
“Three weeks after my treatment finished I managed a small piece of jam tart. It was divine! Even though my taste buds were shot.
“That was Dec 15th 2015 and on Christmas Day I went out for dinner with my family.
“I managed soup and soft parts of my turkey dinner. Sadly turkey was too dry and still is, even with gravy. Going out when I had my NG tube was hard.”
Those diagnosed and dealing with cancer of the throat, mouth or neck are presented with many challenges when it comes to facing Christmas dinner or social events during the festive period.
If they’re lucky, they can eat, but most will find it a difficult laborious process. Food can take a long time to chew to make it soft, or it may even uncontrollably fall from their mouth. Then there’s the constantly having to hold napkins or towels to deal with dribbling fluids now unable to be contained. And if they try to do all this in a public space they also have to endure judgemental or sympathetic stares from people ignorant of what the person is struggling to do. That is something they take for granted. It all adds to the stress someone with a throat cancer is already feeling.
Even having a Christmas dinner with their own families is a difficult process for them to deal with. Their families will understand but might get upset at watching a loved one struggle to eat a simple meal – even if it’s been pulped and made soft. It’s frustrating because there is nothing they can do or say will help. For everyone concerned it’s not the type of festive time it should be.
Alan, from Hamilton, Lanarkshire, continued: “I need to have plenty of water when I’m eating to help me chew and particularly swallow.
“I frequently have to cough and when I choke on food it can be embarrassing. I have had two occasions where I have been unable to clear my throat. That was scary and my wife finds it terribly distressing. My wife worries if this happens and she’s not around to help me.
“We felt isolated by dietetic services. Nobody followed up in the community after discharge for NG insertion. Thankfully my wife worked in ITU so new instinctially how to manage the tube. Though I did lots of it myself.
“Close family and friends are used to my changed eating habits and I feel comfortable with that.
“Going out and socialising is okay but I have to consider what I choose and need to ask for water frequently.
“Time factor an issue too. I take longer to eat some foods and in busy places there’s sometimes a time limit on tables. Not very considerate for head and neck cancer survivors.”
For many of those who have battled throat cancer, they are left with a sense of loss that something most of us take for granted has been taken away.
Quite often patients are left feeling an immense sense of shame or embarrassment at no longer being able to chew properly, dribbling or dropping food in public, or simply being unable to ask for help from a waitress to assist them in some way.
Throat cancer survivor Jeff Bradford, 56, from Forres, Moray, said: “I only managed some soup and ice cream during my first Christmas after treatment.
“Now though, apart from having no saliva and diminished taste, I am in the most part able to eat relatively normally at home and in a social setting, although slowly.
“Lubrication is the key of course and I always order a jug of water when I’m out dining, and it’s not uncommon to go through a couple of litres of water during a meal.
“I do most of the cooking in the house, so have total control here. Most of my dishes have abundant sauces and not too spicy.
“Christmas pudding is probably ok with lots of cream, brandy sauce or ice cream.
“Where alcohol is concerned, I stick to a few beers as it tends to clear any build-up of mucus. But obviously not too much as it ends up dehydrating you.
“Obviously, many cannot eat at all and are still tube fed, and my heart goes out to them.”
University professor Greg Philo, from Glasgow, was diagnosed with throat cancer just six months before his daughter Sarah May Philo, 36 discovered she had a brain tumour.
Brave Sarah May, a stand-up comedian from Dennistoun, hit the headlines after she stunned medics by belting out opera favourite Ave Maria while she underwent surgery in a bid to lighten the situation.
Greg, who teaches journalism and media at Glasgow University, told how he is still terrified of choking in front of other people when eating and drinking.
The 72-year-old said: “I’m very cautious about choking so I take it slowly and drink loads of water as I eat – I don’t speak much when I’m eating in company.
“I discovered smoothies which are really great and put in nuts , mangoes, kale, bananas , grapes, prunes and maple syrup.
“I think if I’d have read the descriptions when I was first diagnosed I would have been absolutely terrified. It’s always a terrible shock to hear the diagnosis anyway.
“Luckily I had a friend who had the same as me but a year earlier. He cheered me up quite a lot and told me to stay away from the ‘what ifs’. In the end as I said you just have to manage as best you can and I found lots of people who were really helpful.”
Jamie Rae, chief executive of the Throat Cancer Foundation, said: “We are keen to raise awareness of the difficulties and harsh reality that many with throat cancer face during times like Christmas and Thanksgiving and Alan’s story provides a heart-rending insight into this.
“We hope to promote a gold standard of care for those living with head and neck cancers and for the HPV vaccination to me more readily available to everyone, in order to prevent others from going through the same ordeal.”