Head and Neck Cancer Australia was a lifeline for me and helped me feel that I wasn’t alone.
Information helped me take control of something that I couldn’t control.
In 2016, Mandy went to her dentist as her gums had been bleeding. With a diagnosis of periodontitis, she was sent to a specialist for treatment and cleaning and was hoping that was it. But the symptoms persisted. She also became concerned about a growing gap in her front teeth. It was not until she went back for treatment before her wedding in 2019 that the specialist agreed that something was not right.
After returning from her honeymoon in November 2019, then her children’s birthdays, Christmas and the start of the new school year, Mandy finally went to a new dentist. Following a quick succession of medical consultations Mandy was diagnosed with oral cancer in February and had surgery at Royal Brisbane Hospital in March 2020.
“I was diagnosed with a squamous cell carcinoma in my upper jaw, a type of Oral Cancer. I had never heard of it before, in fact I had never heard about Head and Neck Cancer.
When I got home after my diagnosis, I looked up Cancer Council Queensland. I thought the more information I had before seeing the specialist Maxillofacial team, the better informed I would be. My pragmatic approach to finding out about my cancer was taking control of something that I couldn’t control. I gathered together as much information that I could, so that I could help my family understand what the process was going to be, what I needed, was going to need, and still need now.”
“I found out about Head and Neck Cancer Australia after my surgery when I googled support groups for Head and Neck Cancer. It was a lifeline for me and helped me feel that I wasn’t alone.
I could find more information about my treatment and I could see others like me who have beaten Head and Neck Cancer, and I found a support group that I could join in person and via zoom. They were people just like me, they didn’t look at me funny because of my speech or how swollen I was. I connected with people I could relax and relate to.”
One of the most surprising things for Mandy was that she did not feel any significant pain after the surgery or for the duration of her hospital stay. She practiced meditation pre-surgery and listened to meditation music post-surgery to help her through.
It was the side effects that developed in the weeks after Mandy’s surgery and radiation treatment that were significant, including painful mucositis in her mouth. The removal of nine teeth and damage to her salivary glands from the radiation meant she was limited to soft foods with sauces or gravies and the tissue implanted in her upper jaw caused speech problems. Mandy also experienced fibrosis in her cheek that made dental hygiene and treatment challenging while fibrosis and lymphoedema in her chin and neck is an ongoing and painful daily reminder of her treatment which is relieved by drainage massages.
“The reality for me is that it has affected how I think of myself in terms of my looks. I hated the way I looked in the first year after surgery, I looked like I had a stroke. My smile is not the same. Having nine teeth removed and the tissue inserted into my upper jaw has altered my smile."
A Village of Support
Coping with her diagnosis and managing a young family was also incredibly challenging for Mandy and her husband.
“I needed to prepare a Will, appoint a power of attorney, and talk to family and friends about what I wanted if I didn’t make it through.”
“With two of my three children on the autism spectrum I had to tell them that it was okay not to visit me in the hospital. I didn’t want them to be freaked out seeing me with all the tubes. My oldest, who has anxiety, came in to see me on the day of my surgery and went through all of those feelings of no control, feeling like she may lose me.”
“I had a village that helped during my treatment and recovery. My family and friends were worried, scared and upset at the possibility of losing me but they never let it affect the way they treated me. My husband was and still is my biggest support, we had only been married for four months when I was diagnosed so he is a champion. My family and my friends have been amazing in what they do for us. My workplace and colleagues have also been super supportive and even organised a laptop for me so I could work remotely in my time of recovery, which allowed me to feel somewhat normal.”
“The experience has meant I don’t sweat the small stuff - it is what it is, I cannot change it, I cannot wish it away. Do I wish I didn’t have cancer, of course, but I don’t let it define me. I am who I am. I still dress up, put red lipstick and make-up on when I go out. I am not going to let it stop me living life to the fullest.
“All my cancer treatment was through the public hospital system at Royal Brisbane Hospital and they were absolutely amazing. The whole team from the doctors, surgeons and nurses in the ward. I cannot praise them enough.”
“If someone is newly diagnosed, I’d say you cannot change your diagnosis but you can change how you deal with it. Meditate, get as much information about your type of cancer and the treatments that you can have. Ask questions about each step of the way, go to the Head and Neck Cancer Australia website and research everything you can. Reach out to a local Head and Neck Cancer support group if there is one. Although there are different types of Head and Neck Cancer, someone in the support group will have had a similar cancer or the same cancer and can offer you support that you won’t get anywhere else.”
“I want to get my story out there to help others. If my story helps one person get diagnosed early and the treatment is not as invasive then I am happy.
Life today for Mandy
Now 51, Mandy lives in Tingalpa, east of Brisbane. Happily married and with three children she works full time and enjoys creating resin jewellery, making soaps and candles.
Two years post-treatment, the fibrosis in her chin and neck continue to be a daily reminder of her treatment. Mandy pays to have regular drainage massages to manage her lymphoedema and needs to see a specialist dentist due to the radiation treatment, which she says is expensive and hard when you have a young family and bills to pay. She attends quarterly appointments with her cancer care team and generally feels in good health with the exception of cellulitis in her face which is caused by a plate in her jaw.
“One thing that I didn’t expect was how tired I still am. I tire easily and don’t have the energy to do the things that I need to do sometimes. It’s hard for my husband as he does a lot but never complains about it.”
“I wish that more dentists knew about Head and Neck Cancer. Had they said something different to me earlier on in the piece, then my tumour would not have been as big and my treatment would not have been as invasive. I think we need to train all general dentists to look for these things as part of routine dental check ups.”
“I am also angry about the cost of my teeth and that the government doesn’t class the replacement of teeth as medical even though the only reason I had them removed is because of cancer. They class the surgery for dental implants as elective. It is crazy.”
“If you meet someone with Head and Neck Cancer don’t be afraid to ask questions, see how you can support someone going through it and what you can do to raise awareness in your friendship group, local neighbourhood and workplace. You never know how your support may help someone share their story or help them on a bad day.”
“It helps to feel like you are not alone.”
You are not alone Mandy.
Thank you Mandy for sharing your story. We are also very grateful to Mandy who has recently organised a Containers for Change program at her workplace in Queensland to help encourage recycling and with all funds raised to be donated to Head and Neck Cancer Australia.
To learn more about Oral Cancer click here.
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