The bunkers of head and neck cancer
Professional golfer, Robert Tilbury, shares the many battles and ongoing victories head and neck cancer brought him.
Robert Tilbury (52) lives in Kempton Park, Gauteng. He has two daughters, Melissa and Dominique, and a grandson, Milan.
In 2014, a lump starting to form under Rob’s jawline. After a doctor’s visit, he was put on antibiotics as the GP thought it could be glandular fever. However, the lump was still there and had gotten bigger after the course was completed. This is when Rob opted to go for a biopsy. “In November 2014, the biopsy diagnosed metastasised Stage 4 squamous cell carcinoma of the lymph nodes in my neck with an unknown primary,” Rob notes.
Treatment commenced in February 2015. “The original treatment plan was 35 radiation sessions and five chemotherapy sessions. But I ended up having 37 radiation treatments due to load shedding issues.”
“By week three of treatment. I started having problems swallowing. My throat was itchy and getting raw from radiation. By week five, I was admitted to hospital due to dehydration and malnutrition as I couldn’t get anything down my throat, not even liquids. At that stage I weighed only 43kg; I was 78kg at the start of treatment. I was put on a drip and had a gastrostomy feeding tube inserted. That saved my life!”
“While I was in hospital, they also put a chemo port in, which I still have, just in case I have a reoccurrence. For four months, I fed myself with supplements and pureed food through the feeding tube,” Rob explains.
“I then started eating soft foods but could still not taste anything. I kept the tube in as a backup in case I was damaging my throat. My taste came back and I could eat normal food again about six to seven months after treatment.”
Other side effects
During treatment Rob also experienced hair loss, weight loss, fatigue, temporary loss of taste and permanent loss of saliva glands. The 52-year-old has to use water as a saliva replacement. He also developed permanent tinnitus (ringing or buzzing noise in ears). He adds that he has learnt how to manage this.
Post treatment Rob suffered chemo brain and loss of teeth due to radiation. “About three years after treatment, I was having lunch with other golfers and my molar just fell onto my plate. Thankfully, they knew what I had been through and it became the joke of the day.”
Teeth extraction and implant replacement
Due to more teeth falling out, Rob had to have a full extraction of his teeth and implant replacements. This proved to be an uphill battle with his medical aid.
Rob explains, “Initially, they would only cover the extraction and false teeth. However, I couldn’t have false teeth due to the fact that I don’t have saliva. You need saliva to form a cushion on your gums and to create a suction to keep them in place. If you don’t have saliva, the dentures rub against your gums and is unpleasant.
I had a set of temporary dentures for nine months while I was waiting for the implants to take to the bone. I only wore them in public; the pain was unbearable. Needless to say, I couldn’t eat solids again for that period of time. It took a lot of convincing from my maxillofacial surgeon and myself for them to approve the procedure. Medical aid classed it as a cosmetic procedure. Luckily, after all the expert letters of motivation and explaining the side effects of radiation on my neck and jaw, they approved the procedure.”
Eating in public
When asked if his swallowing has returned to normal, he replies, “For the most part it has. I still struggle with some foods and always have water close by, or a lot of gravy/sauce in case something gets stuck in my throat. Having minimum to no saliva is a bit tricky and sometimes food gets stuck in my throat and I need to wash it down. Cakes, muffins, bread, etc. suck up what little saliva I have like a sponge, that it sticks to the inside of my mouth and throat so I also have to wash it down. I have identified what I can and can’t eat in public. Once I had a bad experience swallowing in public, so eating in public became arduous. I try and avoid it if I can.”
Learning to say no
Rob’s head and neck cancer diagnosis changed his life in many ways. He explains the positive, “I learnt to appreciate what I have in life. I’m now my number one priority and learnt to say no a lot more now. I was always a people pleaser, always doing things for other people to keep them happy. I don’t judge people; everybody is fighting their own battles and has a story to tell, some worse than mine. Live one day at a time. Some are good, some are bad but put the bad days behind you and make the most of the good days.”
He adds, “The support I got from my daughter, Dominique, and my girlfriend at the time was invaluable. Cancer Heroes Foundation is also a big part of my support base.”
Since Rob is a professional golfer, he wanted to use his talent to create awareness of head and neck cancers. “I had a very ambitious plan to play the top 100 golf courses in SA in 12 months. By doing this, I would create awareness, educating fellow players about head and neck cancer and highlighting why dentists play a huge role in early detection. Unfortunately, this project has been put on hold for a while, but by no means have I given up on it.”
Rob adds that if he knew then what he knows now, he would have done a few things different. “I didn’t go to a dentist before starting treatment. I was pretty much in the dark about what to do and what to expect with a head and neck cancer diagnosis. My oncologist was very good and did his best to explain what to expect, but everyone is different and reacts differently to treatment.”
For more info, visit Rob’s Facebook page Going Longer for Cancer.
MEET OUR EDITOR – Laurelle Williams
Laurelle is the Editor at Word for Word Media and graduated from AFDA with a Bachelor of Arts Honours degree in Live Performance. She have a love for storytelling and sharing emotions through the power of words. Her aim is to educate, encourage and most of all show there is always hope. Write me: [email protected]