WARNING: We never made Nan cover her Mouth Tumour and feel ashamed by it, however throughout Nan’s story below there are a couple photos of the harsh reality that can be experienced if you do not qualify for surgery, or choose not to have surgery.

Shirley was the cherished wife of Eric Fitzgibbon, my Pa; a dear mother to three children; a treasured Nan to sixteen grandchildren; and the best Great-Nan to eight great-grandchildren. But to me, she was my Nan. Nan was always our biggest supporter, our number one encourager, the one we could always count on for a chat. She was our advice giver, and the most loving Nan you could ask for. We were blessed. And always spoilt.

On the 29th of March 2022, Nan's 83rd birthday, I took her to a Dermatologist appointment. Nan often had sunspots frozen or burnt off, and I often took her to medical appointments, so this was just a normal day for us. Nan felt that she had a sunspot that needed to be burnt off, above her lip. But, on this day, much to both of our surprise, I was called into a different room by the Dermatologist who advised me that this appeared to be a rapidly progressing, mouth cancer, a Squamous Cell Carcinoma. The Dermatologist and I then went back to Nan where he explained to her that she needed to be referred to Royal North Shore Hospital in Sydney, as she had a mouth cancer that needed further investigation. Being only 19 months since my Pa had died, my Nan turned to me and said, “I don’t know if I can do this Bel.” I said, “Nan you are strong, we will fight this journey together. You and I are a good team”. And Nan agreed.

Following this appointment, Nan had CT scans to determine the size of the tumour. At the first appointment with the Oncologist, it was confirmed that Nan had Stage 4 Terminal Mouth Cancer despite having none of the common risk factors. My Nan’s Mouth Cancer was incurable (due to how long it had been growing un-detected). No-one in my family had heard of someone having Mouth Cancer, and we were therefore unfamiliar with the signs and symptoms of Mouth Cancer; and, as a result, Nan’s tumour continued to grow undetected for months. The Oncology team discussed two treatment options with Nan.

The first, a 12-hour surgery where they would remove Nan’s lips, part of her roof palate and bottom of her nose as this is where the tumour was. A plastic surgeon would then use a skin graft from her leg to rebuild Nan’s mouth and nose. We were told following this invasive surgery Nan may not be able to speak, eat or drink. Nan would need many months of rehabilitation, speech therapy and occupational therapy to teach her how to speak and eat again. There was also the risk of infection or the skin graft not taking, meaning multiple surgeries.

The other option was some radiation to reduce the size of the tumour, for quality-of-life reasons (i.e., to prolong her ability to eat and drink; to reduce the risk of an arterial bleed out due to the direction the tumour was growing; to reduce the amount of drooling; and, for aesthetics and dignity reasons). Due to Nan’s age (83) and her other medical conditions, such as Type 2 diabetes, previous heart surgery and weak kidney function, the Oncology team warned the family that Nan may not survive this invasive operation. As a family, we discussed the two options with Nan. Nan decided she did not want to die yet; she still had more memories to create with us and whilst she was on earth with us she wanted to continue to speak to us all and share her words of wisdom and encouragement. Our family has always valued gathering around a table and sharing a meal together, and Nan did not want to lose the ability to eat because of the surgery. Therefore, Nan decided against the first treatment option. 

So, Nan underwent two intensive rounds of radiation. By intensive, I mean that a custom immobilisation thermoplastic mask was built to ensure Nan remained completely still. This is because the treatment is pinpoint accurate; it ensures the radiation is emitted on the tumour, and not on the healthy cells of your face. The appointment to make Nan’s immobilisation mask went for 2 hours. Due to the location of Nan’s tumour, her nostrils and mouth cavity needed to be protected. She had her nostrils packed with putty and a tube inserted into her mouth for breathing whilst the rest of her mouth was filled with putty. The thermoplastic sheet was then heated in an oven like machine then placed over Nan’s face and moulded to her face. The mask is then clipped into the table that she laid on so that she couldn’t move. Once the mask was fitted, I had to leave the room, leaving Nan all alone, as if this wasn’t already intense enough. The machines are then turned on so that they can create a treatment plan, pinpointing where the radiation is to be emitted and how much radiation in each session. Halfway through the appointment Nan realised how intense this was and became unsettled. I was allowed to re-enter the room, I held her hand and said, “Nan it’s Bel, I’m right here, nice and slow breathing, you are doing such a great job.”  This was very confronting for us both, but my Nan was a fighter.

With the support of my family, following this appointment I became Nan's full-time carer. I was honoured to take on this role and we shared so many beautiful memories over the next 7 months that followed, right up until October 31st, 2022, where I held her hand as she took her final breaths.

Across the 7 months Nan had so many battles; the oncologists continually said they could not believe how aggressively the tumour was growing. In April was her first round, Nan went into the Central Coast Cancer Centre for radiation treatment four days in a row. Three weeks following this treatment we had an appointment with Nan’s Oncologist. As Nan’s tumour had encompassed her upper lip and the radiation treatment killed these cancerous cells, Nan now had no upper lip. She could no longer get her upper dentures into her mouth, and so she lost the ability to eat and drink and had to go onto a soft palate diet. Due to having no upper lip, Nan constantly had drool running out of her mouth, from April onwards she always had to carry a hand towel with her to catch the drool. Although very practical, this was very degrading. Nan did not take medication to try and reduce the drooling due to the high risk of the medication causing a UTI.

In May, Nan had another round of 4 consecutive days of radiation. As the radiation killed more cancerous cells, Nan was left with a hole where some of her cheek used to be and lost the bottom of her nose. As Nan already had a hole where her upper lip was, it meant we could see into her mouth constantly. Nan also had a hole from her roof palate up into her nose; this meant she may not have been able to drink anymore, however Nan was a fighter, and found a way to position a straw down the other side of her mouth so she could continue drinking independently.

At the end of June, Nan’s face muscle function had decreased. The soft palate foods she had been eating since April, she could no longer eat. We needed to constantly think of foods and different consistency of food that she could try and eat. Nan, did not want to eat 'baby food'; nor pureed meals in the blender, she was losing her dignity with a tumour eating away her face, she did not need to lose anymore dignity with having to eat baby food. Also, she had some sense of taste right to the end, so some of the meal plans that offer soft palate diets were quite bland, or too salty or too spicy. In July we saw Nan’s oncologist. Due to the hole that went from Nan’s top palate to her nose she could not have any more radiation treatment as the fear was that this hole would get bigger, meaning Nan wouldn’t be able to eat or drink anymore. During this appointment Nan showed the oncologist a wound she had on her foot that she had been self-treating with a band aid. The Oncologist alerted Nan that this was a pressure injury and that due to her Type 2 diabetes this was serious. Nan did not like to complain about what she thought were small wounds as she knew how much care we were giving her.  She thought this wound would heal on its own in time. (Nan had insisted on showering and dressing independently, to maintain some privacy and dignity, for as long as possible).  The Oncologist knew Nan did not like to make a fuss and so she did a full body examination to see if there were any other undetected pressure wounds. She found a pressure wound on Nans right hip with a diameter of 5cm. None of Nan’s medical team could understand how she had gotten these pressure wounds as she had the Roho cushions on her chair and bed which is meant to prevent these. Nan was then referred to the Specialist Wound Clinic.

In August we attended the Specialist Wound Clinic for 3 weeks. They told us that Nan had the worst pressure injuries they had ever seen, and this was due to her diabetes. In late August, Nan was admitted into hospital due to a UTI and infections in her pressure wounds. During her stay in hospital Nan started to lose her sight in her left eye due to the tumour continuing to rapidly grow.

At the start of October Nan was discharged from hospital to come home for palliative care; I moved in with Nan to care for her to allow her to spend her final weeks in her home, surrounded by family. Nan was not able to eat much by this stage, mainly ice-cream, yogurt, or custard. She continued to lose muscle function and drinking became increasingly difficult. She was constantly thirsty, due to the drooling, and the fact that her mouth could not close. Drinking from a cup was not possible since very soon after diagnosis.

Nan lost the ability to suck up a straw, something which was very distressing for Nan. We had to squirt fluid into her mouth via syringes. This was a horrific cancer, yet she never complained.

Throughout these seven months there was one symptom we never told our Nan. Her mouth cancer had the most awful stench, constantly. This was due to the necrotic tissue being external (necrotic tissue is dead tissue, and since Nan’s tumour was external this was a stench that was indescribable and always around). We did not want Nan to know this or be embarrassed by this. She had already lost so much dignity due to this cruel illness. We would discuss this with Nan’s oncology team and they had no solution for dealing with this, apart from trying mouth wash. We did try this although the mouth wash caused an intense burning sensation in Nan’s mouth. We could not let her continue with this. We would put some oil diffusers in her house and put vicks under our nose, but no one had any advice about how to treat the stench. I could not find any advice or ideas online, except for using mouth wash.

For Nan, family was the most important thing in her life, and she was blessed to be surrounded by so much love and storytelling and beautiful chaos of so many visitors throughout those last months of her life (as she was throughout her life before this). The whole family became involved in caring for Nan. My parents and aunties were involved in the day-to-day cares such as helping with mealtime, helping lift her in and out of bed for the bathroom, giving her bed baths, sitting and spending time with her. Nan’s grandkids would spend hours sitting by her bed, sharing what was happening in their lives and eagerly taking in her final pieces of wisdom and advice. The great-grandkids loved seeing Nan, their special job was getting Nan extra bowls of ice-cream to share with her during her final weeks.

As is evident from the above, Nan’s experience with this aggressive and cruel form of cancer was at times confronting, painful, undignifying and brutal; but she fought, she showed so much grit, and took it all in her stride – she did all this so she could be here with us for as long as possible. Nan would always tell us that she was fighting so that she could see more of what each of us grandkids and great-grandkids achieved in our life. My Nan never complained about the cancer, or any of the cruel symptoms; she was so brave. And I was so proud of her. It was truly an honour to be by her side in the last months and days of her life. No matter how tough these days got.

Throughout those final months, I continually had discussions with our family about what Nan was facing, what help was accessible to her and what I felt was missing throughout this journey. Nan had a government care package with Baptist Care, she had a nurse that would come every day and clean her wounds and change the dressings. Nurse Kim was so gentle with Nan, she gave Nan the best care, and, she taught me so much about cleaning Nan’s wounds (as they needed to be cleaned multiple times a day), allowing me to be involved in every part of my Nan’s cares. The Palliative Care team would ring and check in and see if we needed anything. They organised a hospital bed to be delivered for Nan, so she could be set up in the loungeroom full time to allow family and friends to constantly surround her bed. These people were strangers to Nan in April, however the whole team of Oncologists, Palliative Care personnel and the Baptist Care team all became important people on the journey.

On hard days, as we sat around the dinner table saddened at the suffering, we saw her enduring and having questions that we couldn’t answer no matter how many people we asked, or how long we researched there were some questions and needs that went unanswered; such as, a different drinking mechanism for someone with mouth cancer. On the good days, when we had small wins, we would spend hours around the family dinner table sharing how we worked out how to lift her out of bed safely and give her a long, hot shower before cutting her nails, giving her the ideal spa day treatment she deserved – Nan called us angels on this day, however I can assure you, the lifting technique I implored was nothing like that of a graceful angel -  or when we discovered how we could get ice-cream into her mouth pain free in her final days when all other eating was causing severe pain.

In Nan’s final hours, I sat next to her on the bed, family surrounding us in the room, and on phones for those living interstate and overseas, we were all there together as a family. I laid my head on her chest, I held her hand and said, “Nan its Bel, I’m right here, nice and slow breathing, you are doing such a great job, I am so proud, I love you so much,” just like at our very first radiation appointment 7 months prior. Nan opened her eyes and looked into my eyes, we continued this for 40 minutes and her breathing calmed, and she took her final breath.

Throughout Nan’s entire Mouth Cancer journey I learnt so much. Nan would always say to me “Bel, what are you going to do next? What are you going to do with everything you are learning?” As I lay on Nan’s chest and she took her final breaths, I knew Nan’s legacy was going to help future Mouth Cancer patients. Nan and I learnt so much together during those 7 months. We created tricks to deal with some of the symptoms; we worked out how we could clean her mouth without causing any pain; we learnt the gap in the medical market for eating and drinking utensils for mouth cancer patients; I learnt some tips for dealing with the stench, without degrading the patient; and, I learnt from my Nan how to fight this cruel illness with immense bravery, courage and strength. And I am going to continue this fight which is why I have started The Mouth Cancer Charity - in Honour of Shirley Fitzgibbon which will be dedicated to creating awareness of Mouth Cancer and its symptoms, sharing the tips and tricks we learnt along our journey with other families fighting Mouth Cancer, helping future patients of Mouth Cancer to eat and drink with some new medical devices and donating to Mouth Cancer research. I aim to support other families who find themselves in the position that we were in. But like everything in Shirley’s life, we will do this as a family. A big, loving, noisy and blessed family; just the way she would have wanted.