Introducing a new feature for NOMAN, our Pieces of the Content series, which interviews with people who have been directly affected by a HPV-related cancer, and scientists and researchers who are fighting to have the cancers caused by this virus eliminated forever. For our first interview, we spoke to Steve Bergman, a survivor of Stage 4 throat cancer and NOMAN alumni — Steve’s crew won the Ibiza – Barcelona leg of our ocean rowing races in 2017.
“No man is an island, entire to itself. Each is a piece of the continent, a part of the main.”
When John Donne wrote these words, he was referring to the importance of community to the individual. Nearly 400 years after those words were written, they still inspire us, and it is where our name, NOMAN is an Island, comes from.
At no time is community more important than when you are facing cancer. For this reason, we have begun a series of interviews, which we have called ‘Pieces of the Continent’, with people who have been directly affected by HPV-related cancers, scientists, researchers and campaigners who are fighting to have these cancers eliminated forever. We hope that these interviews will help people see that by sharing experiences and stories, and working as a community no matter where we are in the world, we can overcome immense obstacles strive for a common goal. In this case, preventing the 5% of cancers caused by HPV.
Q. Tell us a bit about yourself – name, age, job, family?
A. I am Steve Bergman and I am 59. At the time of my diagnosis, I was working in education as a Behaviour Specialist and Counsellor advising Primary and Secondary schools as well as working with adults and young people. I had resigned from my job shortly before I was diagnosed with cancer. I had been an actor for 10 years before I retrained and that is exactly what I am doing again. In the past year I have been in two short films and have done a couple of theatre projects.
I am married to Jacky. We have been together for 32 years and I have a daughter called Sophie. She has just returned home having been away for 18 months working, in Australia and travelling.
Q. What is your story of being diagnosed?
A. In May 2015 to my complete surprise, I was diagnosed with Stage 4 HPV throat cancer, a week before my 56th birthday. It was a shock beyond belief, firstly because I showed all the signs of glandular fever and as a cyclist and runner I was very fit and healthy. I didn’t know if I was going to live or die.
I’d made two visits to my GP. The first time I saw a locum who prescribed antibiotics because she believed that I had sinusitis. A month later I went back to see my GP who I have a very long relationship with and because I complained of a pain in my ear and down the side of my neck, he immediately referred me to ENT at my local hospital. I was seen within the week and so the story begins.
Q. How did you feel when you got your diagnosis?
A. On diagnosis, I went into complete shock. I stopped hearing the detail. Fortunately, Jacky was diligent and read everything about HPV related cancer. She was able to ask the relevant questions. I think I was just numb. I couldn’t believe it was happening. My whole life changed from that day. I never went back to work and within two weeks I was having major surgery. I became the property of the NHS and moved very quickly through the system as the tumour was very close to blocking my airway. I was very frightened and looking back I was in a state of shock.
Q. What was treatment like?
A. From very early on I received ‘wrap around ‘treatment. At every stage I was told what was happening and what I should expect. Throughout the treatment I met weekly with a dietician and speech therapist. It was comforting and reassuring.
The immediate problem was to reduce the massive tumour in my throat before it blocked my airway completely. After a three hour operation I found myself in intensive care with a tracheostomy. Managing the trachi was a full time job in itself. There was suction and drainage, plus hours plugged into the nebulizer.
Eight weeks of chemotherapy reduced the size of the tumour even further, meaning the trachi could come out and I could be measured up for my radiotherapy mask. Every day for 6 weeks we drove to the hospital for radiotherapy. Pinned down by the mask, which covered my head and shoulders, my tumour was zapped with pinpoint accuracy. The neck is a busy area housing a lot essential functions. It wasn’t long before I stopped producing saliva, couldn’t swallow and eating became a real problem. There were periods where I had to be fed through a tube straight into my stomach.
Q.What was the impact of the cancer on your life?
A. Every day was torture; there was no respite for 6 months and then a slow recovery for the next 6. There was never a time when I wasn’t in major pain and discomfort, night and day. The impact is far reaching and I believe that I suffered with post-traumatic stress. My physical recovery took almost a year but the emotional impact was far reaching. It affected my confidence; I had major anxiety, which had an impact on my relationships with my wife and daughter. Evidence now shows that ongoing depression is more common amongst those who have suffered head and neck cancers.
With good health my recovery was quick by normal standards. In hospital I saw other HPV cancer patients whose physical and mental deterioration was rapid and devastating. It can take years to fully recover from this disease and its treatment, some never do. All I can say is that I feel I have learnt from that experience and hopefully will begin to manage pressure much more effectively again in the future. I hope I have learned something from that difficult experience. I have lots of aspirations and am constantly involved in new acting projects and hopefully that experience will not repeat itself. Only time will tell.
Q. How do you feel since being in remission?
A.Since I have been in remission, I am mostly positive and have had some fantastic experiences, including the NOMAN row across the Mediterranean. However, since my most recent experience I am aware that I get waves of anxiety that are often difficult to control. I don’t immediately think about death. This anxiety comes from a thought or an experience and I lose focus and concentration. Prior to diagnosis, I had never suffered with anxiety. But PTS is not rational or fair and can be debilitating and catch me unaware. I think; I hope that I am beginning to manage it more effectively, but it takes time.
Q.What would you say to people who oppose gender neutral vaccination against HPV?
A. My daughter was amongst the first to receive the HPV jab in 2008. The vaccination should have been made available to boys then. Incidents of HPV cancers have been on the increase. The decision to make the vaccination available to boys will save much pain and loss of life.’
I believe in openness and honesty. My cancer was not a judgement on my sexual activity. It just happened. It is just life and life is to be lived. Vaccinating boys means that most boys will avoid what I went through, physically and emotionally. To me it is a no brainer.