By Ria Newman
THIS MUM thought she had just bitten her tongue in her sleep when she woke up with a lump, until it kept GROWING – resulting in her having to have a third of it removed.
Nursery worker Jamie Powell (37) from California, USA, woke up with a bump on the side of her tongue in December 2019 and assumed she had bitten it in her sleep.
However after two weeks passed, the bump seemed to be getting bigger and had started rubbing uncomfortably against her teeth. Jamie soon started to worry.
At a routine dental cleaning appointment in January 2020, she showed her dentist the bump but he didn’t think it was anything to worry about and advised her to continue as normal.
Jamie had a gut feeling that something was wrong and scheduled an appointment with an ear, nose and throat doctor the following month. The doctor did a biopsy by taking a small chunk of tissue out of the bump.
A week later, in March 2020, Jamie got a phone call diagnosing her with aggressive tongue cancer. Jamie felt angry after leading a healthy life and felt she didn’t know who she was after her diagnosis.
She was quickly booked in for a partial glossectomy – surgery to remove the affected part of the tongue. Her tongue was rebuilt using skin taken from her leg and she also had a neck dissection after a scan showed the cancer had spread to her lymph nodes.
Jamie spent a week in hospital and couldn’t speak or eat. She was attached to a feeding tube and wasn’t allowed visitors due to Covid-19 restrictions.
After testing the cancer tissue they had removed, doctors found the cancer had infiltrated her nervous system and she needed thirty rounds of radiation to her head and neck.
Jamie was warned she may not be able to talk or sound the same after the radiation and that she would endure severe burns to the inside of her mouth and neck. Jamie even recorded videos of herself talking to show her children, Jack (5) and James (3), in case her voice didn’t recover.
Every day for six weeks, she was bolted to the radiation table in a mesh mask and ‘zapped’ for fifteen minutes at a time – which Jamie describes as the hardest thing she has ever had to do.
She tried to maintain a positive mindset throughout her treatment and focused on getting healthy again so she could continue raising her children.
After surgery and the treatment, Jamie had to learn how to move and control her tongue again, describing it as like a ‘foreign object’ in her mouth. She also had to work with a speech therapist and spent five months learning how to talk and eat again.
Due to the radiation, Jamie will have a dry mouth for the rest of her life and has to constantly hydrate with water. She will also have difficulty swallowing, talking and eating for the rest of her life.
Jamie felt betrayed by her body having always lived a healthy lifestyle and was embarrassed at how she looked and sounded. The ordeal had left her with a new droop in her mouth and Jamie lost 2st 8lbs from struggling to eat.
However, Jamie’s taste buds are slowly coming back and she can eat soft foods and protein shakes. Although her voice doesn’t sound the same as before cancer, she is thankful she can talk.
Jamie started sharing her story on social media in March 2020 after failing to find anyone she could relate to with her diagnosis. She found her type of cancer was associated with older men with a history of smoking which she has never done.
Jamie used Instagram as a video diary and found it an outlet to be vulnerable and share her story. She soon found a few other women going through treatment and felt less alone, sharing tips with one another to get through the rough patches.
Now, Jamie is taking it day by day – focusing on her recovery. She is continuing with speech and physical therapy to work on her tongue and mouth mobility. A full recovery from tongue cancer is expected to take eighteen months.
“I woke up one morning in December 2019 with a bump on the back of the left side of my tongue and thought I must have bitten it in my sleep,” Jamie said.
“I didn’t think it was a big deal and expected it to heal quickly. It wasn’t until two weeks went by that I noticed it wasn’t healing and the bump was actually getting bigger. I knew this wasn’t normal and the bump was starting to rub against my teeth and cause discomfort.
“I started to Google to see what it could be but I found nothing that looked close to what the bump on my tongue looked like.
“I had a routine dental cleaning appointment scheduled for early January 2020 so I waited for that so my dentist could have a look. He didn’t think it was anything to worry about but I knew in my gut that something was wrong.
“After the diagnosis a few weeks later, I instantly didn’t know who I was anymore and felt betrayed by my body. After all the healthy things I did day after day, I still got cancer. I was angry, but I turned that anger into strength.
“On March 23, I had surgery to remove the cancer from my tongue. They removed one third of my tongue and replaced the tissue with skin from my leg.
“They also did a neck dissection after scanning to see if the cancer had spread anywhere else. The results showed it had spread to my lymph nodes.
“I was in hospital for a week and couldn’t speak or eat. I was on a feeding tube, and due to the surgery being at the height of the pandemic, I wasn’t allowed any visitors. I had to get through this on my own.”
After testing the cancer tissue, doctors found that the cancer had entered her nervous system and required thirty rounds of radiation to Jamie’s head and neck.
“The radiation was the hardest thing I have ever done. I met with my radiologist and she explained that it was a morbid treatment and one of the toughest types of radiation,” she said.
“I was told I may never be able to talk or sound the same, which was heart-breaking and I worried about the effect this would have on my children.
“Every day for six weeks I endured severe burns to the inside of my mouth and neck, and was bolted to the radiation table in a mesh mask and zapped for fifteen minutes.
“I tried to keep a positive mindset and kept telling myself that this is just a blip in time and you are doing this to be able to stay here on this earth for your children.
“My tongue felt like a foreign object in my mouth and I had to re-learn how to move and control it.
“Things that we take for granted every day like talking and swallowing were all a challenge for me. I’m thankful that I can talk but my voice sounds different after surgery.
“I started sharing my journey on social media as an outlet to be vulnerable. It was my therapy. I couldn’t find anyone that was like me when I first looked up my diagnosis – it was all older men with a history of smoking.
“I have never smoked a day in my life and lead a healthy lifestyle, and yet here I was with tongue cancer. I found a couple of women on Instagram who had similar experiences to me and I was so grateful to not be alone in this.
“I became close with them and they shared tips and stories with me on how to get through surgery and radiation – it was a blessing. Now, I share my story to help others and let them know they will get through this weird cancer that isn’t talked about much.
“Cancer is just as much a mental fight as it is physical. I felt ugly and was embarrassed at how I looked and sounded. My mouth had a droop from where I had no feeling on the left side and I lost forty-pounds from being unable to eat.
“However, I’ve survived one-hundred per cent of my bad days and I will continue to do so – I plan on being around for a long time to raise my boys.
“I am slowly starting to eat more food and I’m resting and letting my recovery take the time that is needed. It’s a slow process but I’m learning to love the new me. This cancer needs to be talked about and I am thankful to be the voice for it.”