'I don't know if it was the scare before that I had with the lump, or just gut instinct, but I knew something wasn't right... then I was told I'd a rare form of cancer'
Two years after having a benign lump removed, Sinead Gallen, from Strabane, found another in the same place and was quickly diagnosed with parotid cancer, which affects the salivary glands. She tells Leona O’Neill about her diagnosis
Had Strabane mother-of-four Sinead Gallen not trusted her gut instinct and gone to see her doctor about a strange sensation in her mouth, she might not be here today to tell her story.
The 41-year-old - mother to Ryan (22), James (17), Mia (14) and little Joseph (2) - discovered a small lump in 2011 which was accompanied by pain right before she ate food. Ultrasound scans found a benign tumour which she had removed.
Unfortunately two years later it came back and was confirmed as parotid cancer, an extremely rare form of the disease affecting the salivary gland and diagnosed in just one in 100,000 people a year in the UK.
Sinead says she wants to tell her story so others will know of the symptoms, which are often misdiagnosed as swollen glands.
"The cancer is centred in behind the earlobe," she says. "It's a major gland that produces saliva. Everyone has two and now I have one.
"The first time I had problems was in 2011. I could feel a lump there under my earlobe. It felt like a swollen gland. People would be familiar with the feeling in your mouth before you eat a packet of pickled onion crisps or something similar were your mouth fills up with saliva. I kept getting that no matter what I ate. And it was getting so sore. So I went to the doctor and they had decided that they would send me to Altnagelvin Hospital to get it ultrasounded.
"So I went down and saw Dr McBride, the Ear, Nose and Throat (ENT) specialist, and he decided to remove it in case it turned into something. So I went through the first operation. It lasted about four hours and what they had to do was cut from the top of my ear right down to the bottom of my jawline. It was very severe. They sort of had to peel my face back. And it can affect the nerves in your face.
"So I got the lump removed and they sent it away to be analysed and it came back that it was benign, that it wasn't cancer. From then on in I had to have regular check-ups with Dr McBride.
"Two years later, in 2013, I felt the same feeling. I felt a lump in the same place and also the saliva problem.
"I went to the doctor and I was sent to the hospital again for an ultrasound. And on the same day they decided to do a biopsy and they discovered this time that it was cancer."
Sinead says she was shocked to her core to be told that the disease had been found.
"They rung me at home the next day to tell me to come in and see Dr McBride," she explains. "I just knew by the nurse and the urgency in her voice that the results were back and that it was something bad.
"When I went in Dr McBride told me that the test results had come back and there were cancer cells there. I was totally shocked. I kept saying to him 'are you sure?' and 'is it cancer that I have or just cancerous cells?'. He kept telling me it was definitely cancer and that they were going to take it out and see where we go from there.
"I kind of laughed when he told me, I don't know why. It was just pure nerves. I thought it was something that happens to other people. Even when he was saying the words I was thinking 'no definitely not me'. I had to ask him again to repeat what he said. And the words weren't sinking in. I kept asking him silly questions over and over again. I kept asking him if he was sure.
"Dr McBride is a brilliant man and he calmed me down with the tone of his voice and what he was saying. He told me not to worry, that they had got it. He was very reassuring.
"I went outside and phoned my father. He said that I would be okay. He had taken me out to a place in Tyrone called Glenmornan. There is a well out there that apparently if you drink the water you don't get cancer. He told me I'd be OK because I had drunk this water. It was all pretty silly and funny really. But I think that Daddy was trying to be upbeat for me."
She continues: "I didn't tell my children. I thought that there was no point in telling them until I knew what I was facing. They were only young and I didn't want to worry them.
"I was booked in for another operation. I remember going into the North West Independent Hospital at Ballykelly. It felt like a hotel and the staff were amazing. It was snowing really heavily outside, I remember that so well, just sitting looking out the window at the snow.
"When I woke up from the operation I had one of those oxygen tubes up my nose. During the operation my stats had dropped so low it was touch and go for a time. It was scary.
"After the operation I had 15 stitches in my face and it was really badly swollen and bandaged up.
"I had to wait two days to find out if the cancer had spread anywhere else. I remember sitting with Dr McBride and my hands and my legs were shaking. He said he was going to get straight to the point and tell me that the cancer had not spread. But he did tell me that had I waited, the conversation would have went a lot differently today.
"I don't know if it was the scare before that I had with the lump, or just my gut instinct, but I knew that something just wasn't right. One of the doctors had said that it might be just scar tissue and different things, but I just knew in my stomach that it wasn't and that it shouldn't have been there."
At her lowest ebb, the mother-of-four thought, with the cancer diagnosis, that her life was over.
"I thought that it was all over," she says. "On those few days waiting to see if the cancer had spread I had things sat out in my head. I thought about my children and how I was going to sort them out. I had everything talked through in my head for the scenario of me not being here. I worked out what I would tell them and what would happen. I honestly thought that that time, it had spread. I was so tired all the time, I was constantly exhausted, so I had myself convinced that it was over.
"I played it out in my head that I would go into the doctors, he is going to tell me that it has spread to the lymph nodes and when it gets there it spreads everywhere else anyway. So I thought it was the end. And in reality the tears were blinding me when he told me they had got it all. It was such a relief.
"I was on really strong painkillers when he told me the cancer was all gone. It felt very surreal and like I wasn't really there. I felt so sick, I felt just out of it, but I was able to feel relief when he told me he had caught it in time."
Thankfully Sinead didn't have to have chemo as part of her treatment, but she still lives with the effects of the operations.
"My doctor has reassured me that he got all the cancer out," she says. "I was so relieved. In the last few years now I have been getting regular check-ups and ultrasounds, every three to six months. The only knock-on effect after the operation really is that I have very little feeling on that side of my face. From my ear to the jawline is completely numb.
"There was a very high risk that I would have had Bell's Palsy effect on my face. I was so terrified that my face could have fallen. It was a huge relief that it didn't.
"I have noticed that my skin has dropped a little on that side of my face and I have a lot of bother with ear and sinus infections and check bone infections were my face completely swells up.
"I also constantly have to chew chewing gum to keep the saliva going in my mouth. It has a bad impact on my teeth. They are not as strong as they once were. My mouth also gets very, very dry.
"There are certain foods that I would have loved before that I couldn't stomach now. Everything tastes so much stronger."
Sinead says that she would tell others navigating their cancer journey to hold on to their hope.
"I would say to others, have hope and hold on," she says. "I found a lot of it revolves around your head. There are a lot of things that people will tell you goes in one ear and out the other. It is a very lonely time. It is your body and there is nothing anyone can do. It is either going to go one way or the other.
"I remember people coming to see me and telling me that I was going to be to be fine. And it annoyed me more than anything. It was just words, they didn't actually know that. They didn't know the facts. I know that everyone says it to you to make you feel better. It is a really lonely time and one where everything feels completely out of your control. It is a horrible thing to go through."
Sinead says her children kept her strong through her cancer battle and she was blessed with a little miracle two years ago with the arrival of her son, Joseph.
She says that she wants to warn other people to be aware of the symptoms and take any concerns to their GP sooner rather than later.
"Parotid cancer is so, so rare," she says. "Before I was diagnosed I didn't even know what a parotid gland was, I couldn't have even spelt it for you or pronounce it. And when people ask me about my scar, or about my journey, they don't know what it is and I have to explain.
"I would urge others to keep an eye out for the symptoms. You could notice a lump or swelling on or near your jaw or in your neck or mouth. You could notice a numbness in part of your face or indeed muscle weakness on one side. You could experience persistent pain in the area of the salivary gland or trouble opening your mouth widely.
"For me I was so tired all the time and anything, no matter what it was, bitter or sweet, that I was about to eat I would get an unbelievable pain in that area of my neck.
"If you find a lump or bump anywhere, always get it checked out. Parotid cancer I'd say is one of the most dangerous as it feels just like sore swollen glands, so people might put it down to a throat infection and might ignore it thinking it might go away. It could be easily missed."
Sinead adds: "My doctor told me that I was very lucky that I was so tuned into myself the way I am, because if I wasn't I probably would have dismissed it. Had it been left any longer, it would have been in around the lymph nodes and I might not even be here to tell the story."