Mouth Cancer Action Month About mouth cancer Mouth Cancer Action Month Mouth cancer statistics How to spot mouth cancer Mouth cancer risk factors Living with mouth cancer The State of Mouth Cancer UK Report 2022 Patient journeys Get involved Blue Ribbon Appeal Blue Wednesday Become an ambassador Fundraising Need some inspiration? Set up your fundraising page Our current fundraisers Other ways to fundraise Make a donation Support services Downloads Pages Campaigns & activities Mouth Cancer Action Month Sarah Smith Sarah’s story is unlike any other we’ve told before, but it is far from unique. Her story comes from the perspective of a carer for someone with mouth cancer, in her case, this someone was her father, Richard aka “Dicky” Drewett. Sarah’s father was a big part of their family, who all hail from Stratford in East London. Sarah was his only daughter and he had two sons as well seven grandchildren. He was not a smoker, but Sarah admits that he did like to enjoy a pint of bitter. She says that their knowledge of mouth cancer prior to his diagnosis was poor. Sarah, who works in a homeless hostel in Essex, said she first noticed something was not right when they went on holiday in December 2015. Sarah said she could smell a slightly unpleasant smell on her Dad’s breath. She didn’t think much of it at the time, however, it later transpired that her father had an ulcer that was not going away. This would turn out to be an early warning sign of mouth cancer that would have tragic consequences. In February 2016, her then 72-year-old father went to get his ulcer checked out, Sarah estimates he had it for around three months at this point. The dentist took swift action, referring him for an urgent assessment at the local ENT department. Sarah noticed around this time that the smell from her father's mouth was significantly worse. Little did she know that the smell was that of necrosis, a hallmark of particularly aggressive cancers when some of the tumour tissue starts to decay. Later that month, Sarah’s father got the results of the biopsy and was diagnosed with stage four cancer on the floor of his mouth. Sarah says she wishes he had acted sooner: “It’s such a shame that my dad waited as long as he did to get his ulcer checked out. He probably thought it would just go away on his own, little did he know that for every day he left it his prognosis was getting worse and worse.” Following his diagnosis, Richard was referred on to the Royal London Hospital where he was told his best chance of survival was to have quite drastic surgery to remove the tumour. The surgery would be very invasive and run the risk of leaving him unable to eat or talk normally. It was also likely that the surgery would leave him with some facial disfigurement. Sarah admits that her father was in two minds about whether to go ahead with the operation. However, after some further discussion with the surgeon, Richard decided to opt for the surgery. On 21 March 2016, the 11-hour operation was carried out and a 43mm tumour removed. The surgeon advised that the cancer cells had over-spilled into some of her father’s lymph nodes and he therefore required radiotherapy. What followed was seven weeks of intense radiotherapy, this was particularly challenging, and Sarah remembers her father finding this the hardest part of his treatment. To compensate for being unable to eat, Richard was fitted with a feeding tube to make sure he got the nutrition he needed. He also had to have a tracheotomy fitted to help him breathe. Sarah took the responsibility of helping him through this, as well as helping him clear mucus in his mouth with a special suction machine that he had to carry around. “At times,” says Sarah, “all my dad wanted was to be able to drink a glass of water, but even that he couldn’t do”. It was a very difficult time for both Sarah and her father. Looking back, she adds: “I was very close to my dad and it was really difficult seeing him struggle. He always put on a brave face, but the cancer really took its toll and he required constant care. He couldn’t eat or drink without help and sadly he was never able to be taken off his feeding tube or have the tracheostomy removed.” Sarah continued to care for her father at her home, while also holding down a full-time job. Fast forward to October 2016, and Sarah’s father noticed a tingling feeling just under his ear lobe. Richard went for an ultrasound which found a mass in his neck. Then, in December following a PET Scan, he was told that his cancer had returned. Richard was given three months to live. “It was devastating to hear that news,” says Sarah. “My dad was a real fighter, who loved life and who kept upbeat throughout, so being told it was terminal was an extremely difficult pill to swallow.” Around February 2017, her father had a new treatment that Sarah calls ‘electric therapy’ which he responded well to, and which shrunk the external tumour. By March 2017, Sarah says his condition was improving and he managed to return home for a few weeks, planted a few rose bushes before becoming unwell on 2 April 2017. Richard’s deterioration happened overnight and he passed away the following day at Sarah’s home, surrounded by his family. When asked what Sarah would like people to take from her father’s story, she adds: “I hope that people reading my dad’s story appreciate the importance of getting anything unusual in your mouth checked out by your dentist or GP. “Mouth cancer wrecked my dad’s body and left him in a bad way. I have no doubt that if my dad had got his ulcer checked out sooner, then both his quality of life and chances of survival would have been much better. “From reading some of the other stories on the Mouth Cancer Action website I read a story very different from my dad’s. My father’s journey was far from pleasant and it was really difficult to see him deteriorate and be robbed of his independence." “I hope his story acts as one to highlight the importance of early detection and diagnosis. If in doubt, get checked out." “I also would say that to anyone caring for a person with cancer, keep going. It’s not easy but there are people and organisations out there to help you and you should never feel afraid or ashamed to reach out. It’s important that while you’re looking after a loved one, you are also looking after yourself.” For more information about mouth cancer, including how to spot the disease early, how to reduce your risk and what to do if you notice any of the early warning signs, visit www.mouthcancer.org.