Steve Bergman - Tackling the Trauma of HPV-Related Throat Cancer

Steve Bergman is an actor from England, the UK. He was diagnosed with human papillomavirus (HPV)-related throat cancer five years ago. He had to undergo an aggressive treatment schedule, including surgery, chemotherapy and radiotherapy, that left him physically and emotionally traumatised.

Here he talks about the numbness he experienced after receiving his diagnosis and the terrifying and ongoing impact of his treatment, and how that led him into campaigning and advocacy.

Steve then discusses how he has been judged for having an HPV-related cancer and why he believes that HPV vaccination should be available universally, to both girls and boys.

A Return to Acting

I'm Steve Bergman, and I'm an actor.

I returned to acting six years ago, I'd been an education therapist and behaviour specialist. And I didn't wake up one day, but it kind of evolved that I decided I was going to return to what I've been doing in the very early part of my career.

I'm very much a kind of jobbing actor, where I'm out there with the rest of the people trying to find work and picking up little bits of TV, little bits of light theatre, and small bits of film, and it kind of moves along very nicely.

Five months ago, I moved to the South Coast, having lived in London most of my life and so just facing some new challenges here.

A String of Colds

I was diagnosed in May 2016. Running up to that, what happened was that from December up until then, I had a string of colds that just seemed to be one following another, and I would have sore throats and tiredness.

My wife was getting very annoyed with me because when I was eating, food was getting stuck and I'd end up coughing up and she'd get really irritated. I went to see my GP. I saw a locum, I explained what happened. I was given some medication for it; it was suspected sinusitis.

It was only when I went back to my GP and saw my established GP, that I mentioned that I'd had a pain down the side of my neck, which I think, for him, alarm bells rang. So, he sent me off to my local hospital, to the Ear, Nose and Throat [department], and that's when the whole journey started.

We Need to Speak About Cancer

Within a week of being referred, I went to see the specialist, who I've since got to know very well, and I explained what had been happening.

He put a camera up my nose and down the back of my throat, and then kind-of removed that, sat down, took a long pause, and then just said: “I think we need to be speaking about cancer.”

It was at that point when I kind-of just froze, and I stopped hearing details. And it was my wife, who's an absolutely tenacious character, then started pushing and saying: “How do you know? Usually it's about blood tests and stuff.”

He said: “Not in this case, I can see it, it's there. And it's in the back of your throat.”

Absolutely Numb

I was absolutely numb.

I’d taken the morning out from work. I was going to be delivering some training later in the day. We walked out and I said to my wife: “I think I need to ring my colleague and let her know that I might be a bit late.”

I think the reason why I say that story is because I didn't face the enormity of what was going to be happening. Actually I didn't know what was going to be happening.

I was asked to go back later on in the day, where they would be doing some biopsy work, kind-of looking in the throat, trying to take some samples and all that kind of stuff.

But in my head. I was thinking: “Well, I don't feel right. But what does this mean?” So, I was just left absolutely numb.

I suppose my next thought was: “Am I going to die? What does this mean?” And I really didn't know at that point where I was with it. I was trying to come to grips with the information that I had just been given.

In Complete Shock

Within a week I was in hospital for a biopsy. They said I would be under for an hour, and then I should be going home later on that day. I woke up three hours later.

Once they'd gone inside, they found that… because I was eventually diagnosed with HPV stage IV squamous [cancer] and it was in the my right tonsil. And I woke up and I was fitted with a tracheostomy.

And I found myself, from the recovery room, being wheeled off to the intensive care unit and I was in there for two days. It was at that point when I was just in complete shock. The day before I’d been milling around doing ordinary life and then I became the property of the NHS and just handed myself over.

That was the first stage. The second stage: After recovery, I spent a week and a half in hospital recovering and trying to come to terms and get to grips with the tracheostomy. For which, you know, you’re basically opening up another hole for the airways.

Then once I recovered and was sufficiently strong, it was then: “Let’s deal with the cancer.”

So, what happened then was that I started an intensive six-week course of chemotherapy. That resulted in nausea. I was one of the lucky few, where I wasn't actually physically sick but was feeling permanently nauseous. Six weeks and the impact of that was enormous.

Then it was a small break, and then I moved into the radiotherapy part of the treatment. So I'd had a radiotherapy mask fitted in readiness. Fortunately, the swelling in my throat had gone down, so the tracheostomy came out, and I didn't have to live with that. Eight weeks that was in.

Then radiotherapy with additional chemotherapy happened, and the first week or so, it was fine. Then what happened was that the effects of the radiotherapy around [the throat] started to kick in. So I started to lose taste, that completely went; saliva just completely went. The solution for me was to chew sugar-free gum, and I was constantly chewing. Then sickness from the chemotherapy. And then it just went on and on and on.

The emotional impact; it was just kind of digging away at me. I would wake up more and more anxious, and not knowing where I was. Sleep was becoming very, very difficult. I was on a massive amount of pain relief and by the end of it, I was on Oramorph [liquid morphine], and I could just take as much as I wanted for that.

I also had a peg, a food line fitted into my stomach. I think I probably had an absolute determination to make sure that I just tried to keep eating as much as possible. Even though I couldn't taste the food; there was no pleasure in eating. The most horrendous ulcers were now happening in my mouth.

It almost like getting a suntan from the inside out, so all my neck was flaking, the skin’s flaking off and blistering. And I was just losing a massive amount of weight. I stopped eating for about two days. And then it was nourishment through the stomach.

I was watching people as I was going through the process. I was almost sitting beside other people who were at different stages in their treatment, and I could see from them what was going to be happening next to me. And at that point, it was absolutely terrifying.

The Ongoing Emotional Impact

It's an accumulative process. So, I was still feeling the effects of the radiotherapy, even though it had finished.

The ulcers were still sitting there, and I was having ointments and I was still on Oramorph. The ‘no saliva’; so eating and swallowing was difficult. One of the other things is the body forgets how to do things. At times, I was losing the ability to swallow, so I would have to take a glug of water.

I came through that and was beginning to try to think about how I can deal with all of this afterwards. Also having regular checkups. So I’d go to the hospital, they'd be looking at me, it started every two weeks and then every four weeks. Because what I discovered was, with the type of cancer I had, if it returns it would most likely return within that year and a half. So, that was really quite difficult to deal with.

I've been very lucky in that I've been very fit and healthy over many years. I've been a runner and a cyclist. In a sense, what that did was that aided my physical recovery. But what I discovered, once the whole difficulty of recovery happened, was that there was the emotional impact. And that emotional impact, I would say, sat there for quite some time.

It was very difficult, being a person who's never really suffered with anxiety and nerves. I picked up some consultation work, probably about three months after my last treatment. I remember cycling and a surge of absolute anxiety went through my entire body.

It wasn't for fear of thinking I was going to die. I was just absolutely full of anxiety and worry, and fears, and thinking that I can't deal with the easiest function, the easiest job to do, it was just very difficult.

What I eventually did was found my own support through a therapist. He put his finger on it, and he said: “What you're suffering with is post-traumatic stress.” Just by him saying that absolutely helped me with my recovery, because I could pin something on these terrifying feelings inside, that would just, through a single thought, happen. Something would land in my head, and then I would be utterly anxious.

Then it started to have an impact on relationships with my wife and my daughter. I suppose I kind-of describe it as being a very short tolerance level. I would just get really angry really quickly, and again, that's not me at all.

Then once I started working through that, and thinking this is just all part of what I've been through, it gradually moved on. But I have to say, it took some time, it probably took me a year, a year and a half to emotionally recover. Fortunately, I'm probably in the place I was prior to all that, that diagnosis and all that experience.

What I do now is I just try to, on a personal level, be in the moment as much as possible.

I started campaigning and advocacy work, and I did some fairly high-profile stuff. I think it was a matter of balance, where it was such an extreme experience that I had, that I had to do something equally big to counter that.

Judgemental Attitudes

We were told it was HPV cancer. At that moment of diagnosis, they couldn't determine which type of HPV it was.

Traditionally, HPV cancer was usually prevalent to men of my age who have been heavy drinkers, heavy smokers and then worked in some kind of heavy industry.

I was going through tests that were determining that actually the HPV cancer that I had was transmitted through contact, so sexual contact.

For me, this has always been really interesting. As a much younger man, I was exploring the world, part of that world was finding a partner. So, I was involved in sex and involved in just generally enjoying life.

It's interesting that, through the advocacy and campaigning, some of the feedback that I've received has been almost judgmental, that this has happened to me because of promiscuity, because of this, because of that. Actually, I do not see it as that. I lived a life and I've lived a full, positive life, and I have a wife and a child.

Where I am now is that I don't see it as a judgement. I was just really unlucky in the reason why my HPV virus then moved into being cancer. Eighty per cent of the adults in the UK have the HPV virus. For most of those people, the body deals with that and it goes. For some unfortunate people, it doesn't and I was just sadly one of those people.

Universal HPV Vaccination

Both boys and girls need to be vaccinated. It's not just related to cervical cancer. It's squamous cancer. It's soft tissue cancer, and that's the important thing.

Had the vaccination been on offer when I was a much younger man, I would have absolutely jumped on the opportunity to have that. It's really important for generations who are coming through now that the incidence of HPV cancer in men will hopefully reduce through the generations.

My cancer probably could be related back to 30, 40 years ago. So it's really important that everyone is vaccinated against HPV.