An ulcer turned out to be Stage 4 Tongue Squamous Cell Carcinoma.
April the 5th 2017 was the last time Lora Winter was able to say her name. It was to the lady at the admissions desk at Royal Melbourne Hospital.
In January Lora noticed she had an ulcer on her tongue, no big deal, it was a busy time for her and her family and she wrote it off as stress related. Weeks went by and the ulcer did not go, so at the encouragement of her husband Paul she went to her GP to have it looked at.
Lora was referred immediately to Dr Tim Iseli, an ENT Surgeon and Head of the ENT Surgery Department at Royal Melbourne Hospital, who took a biopsy with an initial tentative diagnosis of a stage I tumour. The results revealed the cells were beginning to change so she underwent a deep biopsy the following week. The results came back as a stage IV tongue squamous cell carcinoma.
“Before the diagnosis I had never heard of it before. I used to be a smoker though not a heavy smoker by any means. I was a “social” smoker and would have a few on the weekend with a few drinks and then every now and then a smoke during work hours. But I quit smoking on all levels 14 years prior to my diagnosis.”
The first biopsy was fairly simple, a sample was taken from her tongue where the lump was. The second, as the name suggests, was a deep sample of tissue and muscle. Lora was admitted for day surgery and for the few days following the operation it was difficult for her to speak, eat and drink.
“These two weeks became a big blur. A blur of information, of emotions, of planning.” A mother of two boys, she did not have time to stop, “People around me could go into meltdown and have tears and crazy thoughts, but I couldn’t.” She spent time recording the boys' favourite bedtime stories so they could hear her voice while she was in recovery.
Lora underwent a 14-hour operation to remove the tumour. Two thirds of her tongue along with the floor of her mouth was removed, a flap was created from her left inner forearm, including removing a vein and artery and a skin graft taken from her left thigh. Lora’s lower right teeth were all removed along with 5mm of her right jaw.
“I am a bit of a patchwork girl now. Made up of bits and pieces. And I don’t mind too much, it means I’m alive.”
Lora was given a tracheostomy and had to re-learn how to communicate post-surgery. “I used a whiteboard in the end. Prior to the operation I downloaded a ‘text to speak’ app but found that I was much faster with handwriting. Nurses and medical staff on the ward are so good at pre-empting questions you can often get away with just writing down a single word!”.
The average recovery time for Lora’s operation is 10 days, but with complications she was in for 24. As a result, her radiation mask was fitted as an inpatient and she still had her ‘trache’.
“I didn’t find the fitting too overwhelming. I felt slight anxiety when I lay down flat due to the trache as it only the second time in almost four weeks that I had done that”. The mask itself is slightly warmed, and almost felt nice against her skin. The worst part was the “blocker” which was moulded to her mouth to protect her upper teeth, jaw and roof of mouth from the radiation. “It really was revolting having it in my mouth - not only the taste, but because I was still having problems swallowing.”
Each radiation treatment is a swift and well-run process. In 15 minutes Lora changed into the gown and the team had the blocker in, did the usual safety checks and gave the treatment. It was barely enough time for Lora to hear two of her favourite songs that the team plays to help patients relax.
“The treatment itself doesn’t hurt. It’s only after a number of treatments that I started to feel the effects. Some pain starts to build up.”
Lora was now facing six weeks of radiotherapy, and was warned that at some point she would need another feeding tube. “I thought no way, I literally just got the other one out and started to experiment with foods and textures that I could digest.”
While at Royal Melbourne Hospital she saw a dietitian, Lisa Tran, about her lack of appetite combined with the pain and discomfort of physically eating. Lisa gave her great guidance on supplements to help her body in the early stages, balanced with the proteins, vegetables and fruit she would need.
“For many, many months I was on a puree diet. Soups or blended foods. Slowly with the help of my mum, sister and brother we started to experiment.”
With the removal of most of her tongue, simple things like moving food around in her mouth is a challenge, she feels like she always took her tongue for granted, “You need it for swallowing, eating, drinking, talking. Chances are over 24 hours a day you are always doing one of these things.” This lack of movement has of course affected her speech.
“There are many letters and sounds that I cannot get out effectively. Most of these are the ones where tongue contact is required to the top of your mouth. Contact with the roof of my mouth is impossible – but anyone in any sort of recovery doesn’t like to hear or use the word “impossible” so I will say it’s a huge challenge.”
She finds phone conversations difficult and tiring, so avoids them if possible, and has managed to get intelligible speech by over-pronouncing everything.
“Most people listening don’t realise it’s over-pronouncing, although I am certain they see the contortion of my face at times and at points of fatigue they notice the effort in getting the sentence out. As the day wears on the first thing that fatigues is my ability to control saliva, so my speech becomes a bit more ‘spitty’ or ‘dribbly’ - literally! By late afternoon or early evening my speech is quite slurred.”
There are many small things that Lora misses now - eating ice cream, talking to her sister on the phone, kissing her kids goodnight (which she can now do) and passionately kissing her husband.
Whether or not these are things she would have wanted to know about before the operation seems irrelevant compared with knowing she will be here for her family. “My children and my husband were always my motivation to keep testing my limitations and pushing through to take recovery further and further each day, week and month.”
“I miss the simplicity of life pre-March 2017, but it’s opened my eyes to many amazing people - the nurses, doctors and surgeons at Royal Melbourne Hospital and Peter MacCallum Cancer Centre”. Lora had a great multidisciplinary team guiding her through this, including Fiona Considine, Head and Neck Cancer Nurse Consultant and Kerrie Treseder, Plastics and Reconstructive Surgery/Head and Neck Oncology Liaison Nurse at Royal Melbourne Hospital and Dr Albert Tiong, Radiation Oncologist and Rhys Hughes, Senior Speech Therapist at Peter Mac as well as a team of dietitians.
“I wouldn’t ever choose to be in this situation. but I am. What I can choose is to find the positives and to focus on them. To find the happiness and the laughter and focus on that. I have always believed that life is what you make it. People don’t make you happy, situations don’t make you happy, you find the happiness in people and situations. So I have carried that forward with me during this whole utterly bizarre and surreal experience of cancer.”
“To achieve you have to believe.”
Our sincere thanks to Lora for sharing her story and to all of Lora’s family and friends for generously supporting Beyond Five’s Soup for the Soul event in July 2018 raising more than $3,500.
Click here to read the full speech Lora recently gave at the Peter MacCallum Cancer Centre in Melbourne, including more details about her diagnosis, coping after surgery with a tracheostomy, radiation therapy, experimenting with foods and life after treatment.
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