Early detection creates possibilities.

The Mouth Cancer Charity is committed to driving awareness at all levels - in our homes, in our communities, and in our healthcare settings. This work is personal. When my Nan was diagnosed with Stage 4 Mouth Cancer, it was already too late for curative treatment. Her tumour had gone undetected for too long. She had none of the known risk factors, but this did not stop her from developing this cruel disease. Her story is not unique in this way.

To honour her and support others impacted by mouth cancer, our work in this area focuses on two key priorities.

Part 1 – Awareness for Community

This part of our charity is aimed at the community with the simple but important message to have regular dental check-ups because early detection can save your life.

We’re encouraging everyone to shift their mindset and routine, by:

• Regularly checking your mouth for changes, lumps, swelling or persistent ulcers

• Booking a dental check-up every six months, even if you wear dentures

• Seeking advice on any mouth ulcer that doesn’t heal within two weeks

• Visiting a dermatologist for any suspicious skin growths around the mouth

Early detection gives us choices. It gives us time. And it saves lives.

Part 2 – Awareness for Healthcare Professionals

The second part of our awareness initiative is focused on empowering healthcare professionals - the first line of defence - in early detection.

We are working to educate and equip healthcare professionals including:

• Dentists and dental hygienists

• GPs and practice nurses

• Dermatologists and skin specialists

• Cosmetic Doctors and nurses

By providing training resources, early symptom guides, and awareness brochures for clinics and waiting rooms, we hope to increase the confidence and vigilance of professionals in identifying the early warning signs of mouth cancer.

Restoring dignity, one straw at a time.

When Nan was diagnosed with Stage 4 Terminal Mouth Cancer, we were told that eating and drinking would become increasingly difficult and, eventually, impossible. For a family like ours, where love was shared over meals and time together was marked by food, this reality was devastating.

Eating Challenges

Almost immediately after her diagnosis, Nan’s ability to eat began to change. She transitioned to a soft palate diet - mashed vegetables, custard, yogurt, and ice cream. But even this came with challenges.

Nan, ever the problem solver, devised her own way of eating. Unable to use her upper lip to scrape food off a spoon, she would place a small amount of food on a teaspoon, turn the spoon upside down without spilling it, and gently shake the food into her mouth. We trialled several adaptive spoons, but most of these were designed for hand or arm movement limitations and not for the challenges Nan faced.

Drink Challenges

Drinking was another ongoing battle. Without an upper lip and with compromised muscle function due to the tumour, Nan couldn’t create the seal needed to drink from a straw. As her tumour grew, she lost the ability to use thin plastic straws entirely. We tried a one-way valve straw, which holds liquid in the straw between sips but without an upper lip, even that became impossible. She also lost function in the buccinator muscle, which is essential for creating suction and control while drinking.

She was left exhausted, thirsty, and humiliated by something as simple as not being able to take a sip of water on her own.

Eventually, we resorted to syringing fluids into her mouth. It was heart breaking.

A Fight for Dignity

Nan fought to eat and drink independently for as long as she could. She did this not just for nourishment, but for dignity. For control. For strength. She fought to keep hold of the small routines that made her feel human.

Throughout her journey, I spoke with countless healthcare professionals, oncologists, palliative care teams, hospital geriatricians, nurses, OTs, and speech pathologists seeking help. I searched for products. Tools. Utensils. Anything that could make eating and drinking easier.

But there was nothing. Not a single product on the market designed for people experiencing the same struggles as my Nan. 

Our Mission: To Do Better

That is why part of the mission of The Mouth Cancer Charity is to change this.

We are committed to designing, producing, and testing specialised eating and drinking tools for people living with mouth cancer. These devices will be developed in consultation with healthcare professionals, patients and carers.

Through your donations, our lived experience, and collaborations with healthcare professionals, and other families who have faced the harsh realities of this disease, we will build what doesn’t yet exist. So that future patients can hold on to the small comforts of independence and dignity for as long as possible.

Research is the foundation of progress. Whether it’s developing better treatments, improving accessibility, enhancing everyday care, or one day finding a cure, we believe every breakthrough begins by asking the right questions and seeking better answers.

Read current research here.

The things we wish we’d known sooner .

This part of our charity is all about sharing the practical knowledge we gained during our journey with Nan. It’s for patients, carers, families, and friends. We want to offer the real-world help we couldn’t always find when we needed it most. The everyday solutions, small tricks, and workarounds that made a big difference.

When Nan was diagnosed with terminal mouth cancer, I committed to caring for her the best I could. I wanted to spoil her with comfort, support her with compassion, and source the best products available.

Learning from Other Organisations

In my research, I came across several organisations doing excellent work:

• The Mouth Cancer Foundation (UK) has built a strong community forum and produced a useful self-check video. We are very excited to be collaborating on some impactful projects together.

• The Oral Cancer Foundation (US) offers free screening events to encourage early detection.

• Head and Neck Cancer Australia provides detailed information about symptoms and treatment options.

These organisations are doing essential work to raise awareness and support patients.

But we wanted to share some tricks, or as Nan called them, “Bella’s special way of caring for me.” These were acts of love, that preserved her independence, her comfort, and her identity in the face of a brutal disease.

I want to share everything we learnt. I also want this website to be a space where that conversation continues - a place where everyone affected by mouth cancer can share their experiences, support one another, and feel heard. If you have a contribution, a story, or a question, please contact us. This is where our community begins.

1-Mouth Hygiene & Comfort

One of the greatest challenges was keeping Nan’s mouth clean especially around the tumour without causing Nan pain. The mouthwash options recommended to us caused intense burning and discomfort. Even homemade alternatives like diluted solutions of Himalayan salt and bi-carb soda became too painful as the cancer progressed. Nan also had no upper lip, making it nearly impossible to swish liquid around her mouth for rinsing.

What Worked for Us:

We developed a gentle, pain-free cleaning routine Nan came to love. This assisted with comfort, improved her sense of taste (like that clean feeling after brushing your teeth), and reduced odour.

1. I filled a disinfected bowl with saline solution and soaked gauze in it.

2. I placed the gauze gently on the tumour, allowing it to soften the area.

3. While that sat, I used cotton tips dipped in saline to clean deeper parts of her mouth.

4. I then replaced the gauze with fresh pieces for a final clean.

5. We finished by spraying a dry mouth spray to help Nan feel refreshed.

If this method doesn't work for your loved one, or if you’re trying to find alternatives, we encourage you to visit the Support Platform to ask questions or share your own approaches.

2-Eating & Drinking

Nan’s challenges with eating and drinking were ongoing and, at times, deeply confronting. Many websites recommended a liquid diet, but that wasn’t viable for someone without both lips. These daily acts that most of us take for granted became a source of stress and loss of independence.

Our Solution:

Nan invented her own technique’s for eating and drinking. For eating, she would:

• Put food on a teaspoon

• Turn it upside down without spilling

• Gently shake the food into her mouth

This workaround gave her a small sense of control, even as the disease tried to take everything else.

For drinking, she would:

• Put the straw down the side of her mouth opposite to the tumour.

• Once drinking became harder, we resorted to syringing fluids into her mouth.

This cruel illness takes so much, and it can steal much of the joy from eating and drinking. We encourage families and carers to continue offering small comforts; a soft cake, a bowl of ice cream, or a strawberry milkshake can go a long way toward bringing a little joy into someone’s day, and creating special moments even in the midst of difficult circumstances.

3-Combatting Odour

One of the hardest and least talked about symptoms of mouth cancer is odour. Necrotic (dead) tissue on the outside of the body creates a powerful and confronting stench. It’s something unique to external cancers that we were never prepared for. Though we never told Nan, not once. She had already lost so much. We weren’t about to let something else rob her of her dignity.

But it was difficult. Some friends couldn't visit. The smell seeped into our clothes. It was one of the most painful, unspoken parts of caregiving.

We did everything we could to reduce the odour:

• Vicks Vaporub under our noses

• Oil diffusers around the house

• Advice from palliative nurses to try placing charcoal on dishes around the room

These steps helped a little. They weren’t perfect. But they were something, and sometimes, that’s all you need.

4-Tips for Caregivers, Family and Friends

If you are a caregiver, a family member, or a friend, please go gently on yourself. This illness is confronting and cruel for the person living with it, but it is also deeply difficult for those who love and care for them. Take regular breaks outside when you can, breathe in fresh air, quiet your mind, and refuel yourself for the care still to come.