Ruth Sutherland reveals tonsil cancer suffering of husband
Wednesday, June 7, 2017, is a date etched indelibly on my mind, like my birthday or our wedding anniversary. In the early afternoon of that day, I sauntered into Guy’s Hospital in London, thinking that I was picking up my husband Michael from a routine tonsillectomy operation.
I stepped out of the building several hours later into a world that had totally changed. Our life BC – Before Cancer – had gone for ever.
I now know what the novelist L. P. Hartley meant when he wrote that ‘the past is a foreign country’. We’ve become exiles from our former lives.
Michael Neill, husband of Mail on Sunday City Editor Ruth Sutherland. Michael was diagnosed with throat cancer caused by HPV
We don’t know whether we will ever regain that lost place where we once lived – we just trust the doctors and keep hoping.
I’m acutely aware that we are luckier than many others. The cure rates for the type of cancer Michael has – HPV-associated tonsil cancer – are very good. It could be a lot worse.
What haunts me about our situation is that there is now a vaccine. A jab that could have prevented everything we have endured in the past few months and whatever might still be to come.
It’s too late for us, and we are philosophical about that. It isn’t too late, though, to shield future generations of boys and men.
An effective vaccine would spare them one of the toughest cancer treatments in the entire repertoire, with some of the most profound, long-lasting and debilitating effects on survivors.
Girls are already routinely vaccinated and there has been a big drop in HPV-associated cervical cancers.
But I am scared and saddened to the core that the calculator-wielding officials on the Joint Committee on Vaccination and Immunisation have decided it isn’t a good use of NHS resources to vaccinate boys. If the committee members had seen what I have seen in the past few months, and if they have a shred of empathy, they would change their minds.
This vaccine could have spared my husband the worst time of his life so far, and it could protect your sons, grandsons and nephews too.
The cure rates for the type of cancer Michael has – HPV-associated tonsil cancer – are very good
Before Michael’s diagnosis, I had never even heard of HPV-associated head and neck cancers in men. If anything, I thought HPV – the human papilloma virus – was a concern purely for women, because of its links to cervical cancer.
I certainly had no clue that men – and a smaller number of women, too – could be affected by throat cancers of this sort. I saw the figures last week showing that prostate cancer now kills more men than breast cancer causes deaths among women, and the controversy over whether this is anti-male bias.
In the case of the HPV virus, there is a similar debate to be had. The NHS has deemed that boys will be denied the vaccine, which is given routinely to girls, on the grounds of cost.
I don’t know whether sexism is at the root of it, but I do know this: there is no such thing as a ‘male’ or ‘female’ cancer. The disease hits not just the patient, but their whole family.
‘Male cancers’ affect their wives, mothers, sisters and daughters, so if policy is driven by pro-female bias, it is misguided.
I also know this: we don’t have a son, but if we had, I would pay to have him vaccinated privately.
Put simply, a cruel equation has been performed. The committee has calculated it is cheaper to treat the men who get HPV throat cancers than it is to prevent them getting ill in the first place. Resources are tight and I’m sure they don’t mean to be callous. But I can tell them this: if you were in our shoes, you would change your mind in a nanosecond.
In the early days after diagnosis, I could barely look at the other patients. They were skeletal, shuffling, pitiful figures, attached to tubes and machines, with their exhausted wives in attendance.
Michael was – and I hope will be again – a vigorous, non-smoking and very fit man in his early 60s, who retired from a longstanding job at the Financial Times. Yet in less than a month, we were just like all the other couples haunting the ward.
‘There is a mini-epidemic of cancers like this,’ our oncologist explained. ‘We’re not sure why. It’s the type of cancer Michael Douglas had.’
Michael was given close-fitting, Hannibal Lecter-style mould like this one of his face (File picture)
His tone suggested we might find it consoling to share a cancer with an Oscar-winning Hollywood star.
He told us HPV-associated throat cancers respond better to treatment than those linked to tobacco consumption. Almost as an afterthought, he added that the treatment is ‘a little rough’. If understatement were an Olympic event, he would have won a gold medal.
The next few weeks were a blur of preparations before Michael’s course of radiotherapy and chemotherapy began. They made a close-fitting, Hannibal Lecter-style mould of his face so that he could be fixed in it, then bolted down and kept immobile, in order for the radiotherapy to zap him in exactly the right place.
On the morning he began his treatment, he left me a short note. Michael is an old-school male of the strong and silent variety. In his message, he told me he loved me very deeply, though he sometimes found it difficult to say so. He wrote that he was committed to doing everything he could to get better, however hard it became, so that we could have more happy times together.
Four weeks later, he was lying in Guy’s Hospital, almost broken by the treatment. Quietly, he said that if it weren’t for me, he would rather die than take any more pain. This, from a man who had suffered broken limbs on the rugby pitch and still played on.
It was a dark minute that passed into the night, but I’ll never forget.
I don’t want another woman 20 years from now to have to hear that. The decision not to vaccinate boys against HPV is the worst form of false economy. It ignores the human costs. Where, on the balance sheets, is the accounting for moments like that?
It’s true that cases are still rare, but they are increasing rapidly. And even one case that could be avoided is one too many.
The very fact that survival rates for HPV-linked head and neck cancers are good could lead to a false sense of complacency. So I’m going to break with the convention of the saccharine-coated cancer narrative, where the indignity and pain of the treatment is politely glossed over. If you are going to deny men a vaccine, then at least listen to the consequences.
An effective vaccine would spare men one of the toughest cancer treatments in the entire repertoire
The first two weeks of treatment weren’t too bad. But by week three Michael had collapsed twice and lost huge amounts of weight.
By week four he was in such a bad way that he passed out while trying to shower. He was rushed to A&E in a blue-light ambulance.
For the final fortnight of his treatment, he stayed in hospital as an inpatient, and was taken in a wheelchair to be administered his radiotherapy. His neck was red raw, with skin peeling off and burns that literally oozed. Inside his mouth was worse. He had agonisingly painful ulcers, like deep moon-craters the size of 50p pieces.
His body shuddered with the constant coughing-up of mucus. He produced so much phlegm a supply of cardboard dishes had to be kept in a stack by his bedside.
Treatment finished in September. We went home with literally a crateful of different medicines, from anti-nausea pills to a battery of heavy-duty painkillers.
The radiotherapy had scorched the inside of Michael’s throat so badly that he couldn’t even drink a sip of water, let alone eat a morsel of food. He took his nutrition through a feeding tube from his nose directly to his stomach that dangled round his ear for the next four months. I had to move it to kiss his face.
The physical side is hard, but I wonder whether the vaccination committee members ever consider the emotional costs?
One morning last week, Michael jokingly called his pain relief medicine ‘Oxymoron’ instead of its proper name, OxyNorm, setting both of us off in a fit of giggles. I suddenly realised that we hadn’t enjoyed the simple pleasure of laughing at something silly for months.
Michael is recovering slowly from treatment. We don’t know yet whether it has worked, but we’re optimistic – and another significant date is approaching. May 2 will be our 20th wedding anniversary. We have to believe that by then, Michael will have regained more of his strength and that we will have many more celebrations in the future.
I can’t bear the thought that there might be a young man getting married now, full of hope and optimism, a beautiful bride on his arm, who will be condemned to the same ordeal as us. And all for the want of a cheap, simple vaccine.
Michael's story I wouldn't wish it on my worst enemy
There are many ways to become aware of what you have previously taken for granted, and pain is one of them.
Tasting food, or sipping a good wine or even a cup of tea – these are things most of us don’t think twice about. But for the past six months, I have been unable to take them for granted any longer because I’ve been plagued by excruciating pain in my mouth and throat following my treatment for HPV-derived cancer.
I have friends with a young son and would urge them to have him vaccinated. This is not something I would wish on my worst enemy.
I’m now acutely aware of my mouth and throat as the key passageways for the vitals of life – food, water and oxygen. And when your throat and mouth have been traumatised by radiotherapy, this all becomes extremely painful.
Ruth Sutherland's husband Michael Neill in hospital. He has been in by excruciating pain in his mouth and throat following treatment for HPV-derived cancer
So much so I had to have a feeding tube fitted through my nose into my stomach, after being rushed to hospital early one morning following my collapse due to severe dehydration.
Now almost five months later, I have finally got rid of the feeding tube and can eat and drink through my mouth. Many foods and all alcohol are still off-limits. It’s soft food only – nursery favourites such as bread and butter pudding, or shepherd’s pie.
Food, particularly meat, has to be pureed and water remains my main liquid, along with milk and cream.
It is socially isolating, because going out with friends means sitting with a glass of water while they enjoy wine or a G&T, and I am concerned about going on holiday because of my restricted ability to eat.
My mouth and throat are still very sore and I am still using strong painkillers. It is gradually becoming more bearable as the trauma of radiotherapy subsides.
My energy levels remain low, so low that I have to be careful I do not fall asleep almost immediately after sitting down.
And I feel the cold more intensely, another after effect of radiotherapy, which also saw me lose nearly 3st.
I do not yet know if the treatment has been successful because the consultants cannot see clearly on the scans what may be cancer or is tissue traumatised by radiotherapy.
I still remember a friend’s shocked intake of breath when he saw the burn on my neck.
I am scheduled to have another scan and meeting with the consultants this month, when hopefully they will be able to say if the treatment has worked.