When Nan received her diagnosis of Stage 4 Terminal Mouth Cancer, she was told that due to the aggressiveness of the tumour, eating and drinking would become harder until one day when it would become impossible.

For a family that had always bonded and spent time together around food, this was hard.

Almost immediately following her diagnosis, eating became harder. Nan had to move to a soft palate diet. This consisted of mashed vegetables, custard, yogurt and ice-cream. Nan could not have a liquid diet as, the tumour had encompassed her upper lip and the radiation treatment killed these cancerous cells, meaning Nan now had no upper lip, instead just a hole where it once was.

Nan was a problem solver. She developed her own eating technique. She did not have an upper lip to help get the food off her spoon into her mouth, instead, she would put some food on a teaspoon, turn it upside down without spilling the food, then shake the food off the spoon and into her mouth; (we did try some medical spoons available, however, these spoons are mostly created for situations where medical conditions make it hard to control the spoon from your plate to your mouth, this was not what Nan needed help with. Nan needed help getting the food off her spoon with no upper lip).

Drinking was a huge battle of its own. To drink without any upper lip and be able to keep the straw in your mouth whilst also keeping the fluid in your mouth so as to swallow, and not choke, was a challenge. To drink through a straw you need to create a seal, then you use your muscles to create suction so the fluid goes up into your mouth.

As Nan’s tumour continued to grow, Nan lost the ability to suck up the thin plastic straws. We thought we had found a solution by purchasing a Pat Saunders one way straw. When you drink using these straws, fluid remains in the straw meaning the next time you drink you do not have to suck as much to get the fluid into your mouth. However, having no upper lip Nan could not create a seal around these straws which is essential for straw drinking as well as not having full function of the buccinator muscle (the muscle used to compress the cheek allowing you to whistle, blow, and suck) due to the direction the tumour was growing. Yes, we could suck the liquid up for Nan, but again this was removing her independence.

When your energy has been depleted by a very aggressive cancer, you are thirsty (made worse by the drying effect of having your mouth open all of the time without a top lip to stop saliva from constantly dribbling out) and using all of your remaining strength to suck up a straw and not get any fluid – you can become scared. To add to this, this was a major blow to Nan’s dignity - she could no longer even have a drink of water independently. To give Nan fluids, we had to use a syringe and squirt water carefully into her mouth.

My Nan fought to continue eating and drinking independently for as long as possible. She did this to keep some level of dignity, some independence, and to fight against this cruel illness that was taking so much.

Throughout this journey, I spoke with the oncologist, the palliative team of doctors and nurses, the geriatrics team at the hospital, community nursing, occupational therapists and a speech therapist about what tools were available to assist us with this. I then began researching to see if there were any products out there to make this daily task of eating and drinking (something that we all do without thinking every single day) easier for her. To my shock and disappointment and as explained above, I could not find any product that was suitable to help my Nan.

I do not want future mouth cancer patients to have to eat by turning a tea spoon upside down, and wearing most of their meal; I do not want them to lose the ability to drink independently when they lose muscle function and cannot suck up a straw. The funds raised by The Mouth Cancer Charity will go towards creating new eating and drinking utensils to ease this burden for future mouth cancer patients.

These products/devices will be designed, made and tested in consultation with various medical professionals including dermatologists, oncologists, OTs and community nurses.

This area of our charity will have two parts.

Part 1 – Awareness for us All

This will be aimed at early diagnosis, so as to help prevent people being diagnosed with mouth cancer “too late” like my Nan.

When my Nan was diagnosed with Stage 4 Mouth Cancer, we were advised that there was no treatment available to cure her due to the aggressiveness of the tumour, and the time that had lapsed prior to diagnosis, she would not recover from this diagnosis. Nan was offered some radiation treatment 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).

My Nan had none of the known risk factors associated with this disease; poor diet, excessive drinking or smoking, or HPV. Early detection of this disease is crucial. My Nan had dentures meaning she didn’t go to the dentist, very often. She was from a generation that did not complain, or necessarily seek help quickly when an ulcer in the mouth was taking longer to heal than usual; these are some of the ways that mouth cancer can be detected early in patients.

I know many of us do not enjoy going to the dentist; we do not like the taste of the products, the sounds, the pain, the sensations at the dentist. Often, we find ourselves overdue for a check-up and continue to put it off. Sometimes, we think mouth sores or ulcers are small and will go away in time, and we are all guilty of not being as vigilant as we could be in getting these things checked out.

However, if we all work at shifting this mindset, by:

-regularly checking our own mouths for new growths/areas of inflammation;

-having 6 monthly dental checks;

-having any mouth ulcers checked that don’t go away after 2 weeks; and,

-see a dermatologist for any growths under the skin or around our mouth,

we will all have a better chance at beating this cruel cancer. Or, at the very least, giving us treatment options, the importance of which cannot be understated when it comes to our health.

Part 2 – Awareness for Specialists

This area will focus on providing information to our medical professionals such as dentists, dental hygienists, GPs and, Dermatologists. We want all these medical professionals to be more proactive at encouraging their patients to get regular check-ups, as well as having informative brochures in their waiting rooms to educate and create awareness of the early detection symptoms. All the above will provide future mouth cancer patients the best chance at fighting this cruel illness.

This phase will focus on providing practical tips, tricks, and information we learnt on our journey with Nan. We want to support future mouth cancer patients, their families and friends.

When Nan was diagnosed with terminal mouth cancer, I knew straight away that I wanted to look after her, to give her the best care I could, spoil her with all the “best” medical supplies out there to make this journey as easy, peaceful, comfortable and dignifying as it could be for her.

When researching Mouth Cancer, I discovered there aren’t many charities dedicated to mouth cancer around the world, nor many organisations that seek to provide support in this space.

The Mouth Cancer Foundation in the UK focuses on raising awareness about Mouth Cancer, and has created a community forum. I found this really inspiring as I read the individual’s stories and how The Mouth Cancer Foundation had supported them in their fight. They have also created a self-check video which is really useful and worth watching. The Oral Cancer Foundation in the US is holding free screening events for members of the public. They understand that early diagnosis is important for treatment outcomes. The Head and Neck Cancer Australia website provides information on Mouth Cancer, symptoms and treatments.

All these charities and websites provide much information about mouth cancer and symptoms, and treatments, and are creating awareness of mouth cancer around the world. They do a very important job and I am grateful for the work these charities are doing. However, I could not find any information specific to Nan’s diagnosis, or struggles she had with daily activities that we all do without thinking twice about.

Mouth hygiene & comfort

For example, Nan was advised to clean her mouth, even where the tumour was, to reduce the risk of infection. The mouth wash products recommended caused a lot of pain and a burning sensation in Nan’s mouth. We tried diluting the mouth wash and mentioned to her Oncologist. She agreed this was an area that needed further investigation and suggested some people make their own mouth wash out of Himalayan salt and bi-carb soda. In the beginning this was a great solution for Nan, but as the tumour continued to grow Nan once again had the burning sensation and an intense pain when she would use this solution. Not to mention as Nan did not have an upper lip she wasn’t very successful in swishing this solution around her mouth to give it a good clean. I learnt how to clean Nan’s mouth without causing her any pain.

Suggestion: I would use saline, gauze and cotton tips. I would squirt saline into a disinfected bowl, and soak gauze for a few minutes. I would then place these pieces of gauze on the tumour. Whilst this was soaking into the tumour, I would put saline on cotton tips and clean the deeper areas of Nan’s mouth. I would then remove the gauze from the tumour and soak new pieces of gauze to give it one final clean. I would finish the process with spraying dry mouth spray into Nan’s mouth to give her a feeling of freshness. Nan loved this treatment!

Give this a try; if you do not have success or it is too uncomfortable for the person you are caring for, jump across to the Support Platform and leave a comment or post a question.

Eating & drinking

The difficulty Nan faced with eating and drinking was not addressed clearly, there was no one-stop-shop for information regarding special products or techniques to assist her or an in depth guidance regarding implementing a soft palate diet.

Some websites recommended a liquid diet, but this is not possible for all mouth cancer patients, particularly if they are like Nan and no longer have both lips. These are daily activities we all do, eating and drinking and cleaning our mouth. Yet I could not find any practical information to help Nan. We had to constantly try different solutions which took time and sometimes caused Nan pain.

Suggestion: I mentioned in the above section in Medical Device Creation, the spoon technique that my Nan devised on her own. You may want to try this, or do you have any other suggestions that you might like to share? If so, drop those in the Support Platform and we will post them for everyone to see and benefit from.

Combatting odour

The other thing with Mouth Cancer is that it is incredibly odorous. It is an external cancer; meaning that it is necrotic (dead) tissue outside of the body. We never told my Nan that the mouth cancer smelt, we just sucked it up and dealt with it. We all felt it was the least we could do for her. Nan was the one battling an aggressive cancer; the stench was not going to keep us away. Plus, she did not need one more thing that chipped away at her dignity.

However, it did keep away some friends from visiting, as it was too much for them; and we did not blame them. Speaking candidly, it was a smell we will all never forget, and a very difficult and confronting part about caring for somebody diagnosed with this type of cancer. There were some days that we felt we could not walk into the room, and often we had to change our clothing, as the odour got into the material.

Despite this being such a major symptom, and one that could realistically impact a person from being able to stay in their home with their loved ones, once again when researching, I did not find any information about how to reduce the stench of the mouth cancer.

Suggestion: As a family we worked every day to address the difficulties Nan faced due to this horrific cancer, we were always fighting to find solutions for Nan. To try and combat the stench we used some strategies such as putting Vicks up our nostrils or oil diffusers in her home. Some palliative care nurses suggested that placing charcoal in dishes around the home can also help with this.

I am passionate about sharing all of the tips, tricks and workarounds that we learnt through Nan’s journey (what she would often refer to endearingly as “Bella’s special way of doing it”) with every family, friend, doctor etc. that knows someone fighting mouth cancer in the hope of easing some of these burdens.

I also want this website to provide a platform for mouth cancer patients, their families, friends, dentists, dermatologist, oncologists and all of us to further the conversation of Mouth Cancer.

This will include:

• a comprehensive information section on our website that is regularly updated with the latest research and practical guidance;

• a submit your question portal, where the Charity will commit to researching, reaching out to our network of medical contacts, speaking with other charities, oncologists etc. and doing everything we can to provide answers to your questions; and,

• an online platform on the website where mouth cancer patients and their family and friends can share any tips and tricks or messages of support to others fighting this cruel illness.

As with any illness, the importance of research cannot be understated. This includes research into treatments, research into accessibility and, research into cures.

As part of our journey, we were told that there are currently two main treatments available for those diagnosed with mouth cancer.

One is surgery. This surgery is approximately 12 hours long, it involves removing the tumour then reconstructive face surgery to put skin grafts where the tumour was. This requires extensive rehabilitation post-surgery with patients often needing to learn to speak, eat and drink again. There is also a risk that the skin grafts do not take, and this part of the surgery would then need to be repeated. The second is radiation or chemotherapy. Patients need to have a custom immobilisation thermoplastic mask built to ensure they remain completely still as the treatment is pinpoint accurate.

These treatments are gruelling, confronting, risky and not 100% effective. The aim of this part of the charity is that as technology advances, and so too does our understanding of this cruel illness, treatment options will continue to improve and expand. However, this can only happen if there is funding allowing research to take place. Please play your part and donate here.

Latest Research Articles:

1- Miranda-Filho, A., & Bray, F. (2020). Global patterns and trends in cancers of the lip, tongue and mouth. Oral oncology, 102, 104551.

Abstract: “Global descriptions of international patterns and trends in oral cancer are informative in providing insight into the shifting epidemiologic patterns and the potential prevention of these tumours. We present global statistics on these cancers using the comprehensive set of national estimates and recorded data collated at the International Agency for Research on Cancer (IARC).”

2- Daniel, M., & Rogers, S. N. (2022). Professional delays in referral of patients with mouth cancer: six case histories. British Dental Journal, 233(12), 1003-1008.

Abstract: “Professional delay is an important delay in referral of patients with suspected mouth cancer. Missing the possibility of cancer might not only result in worse outcomes in respect to function and survival, but also have medicolegal implications. The aim of this article was to review a consecutive cohort of patients over a two-year period with mouth cancer diagnosis and identify those with professional delay and illustrate the main types of presentations using short case histories. The multi-disciplinary team records were used to identify case notes of a two-year (2019 and 2020) consecutive cohort of patients diagnosed with mouth cancer, including referrals from primary and secondary care. Professional delay was considered if red flag symptoms were not referred within two weeks or if there was initial misdiagnosis. In total, 246 patients with mouth cancer were discussed with the multi-disciplinary team: 35 had delay in referral or misdiagnosis of mouth cancer. Six common scenarios were identified: 1) sudden onset paraesthesia; 2) dental abscess; 3) temporomandibular joint dysfunction syndrome (TMJD) and abscess; 4) TMJD; 5) trauma/facial fracture; and 6) non-healing socket following dental extraction. To conclude, it can be difficult to accurately diagnose mouth cancer in primary dental and medical care and an index of suspicion is essential in order to minimise the possibility of professional delay.”

3-Beacher, N. G., & Sweeney, M. P. (2018). The dental management of a mouth cancer patient. British dental journal, 225(9), 855-864.

Abstract: “Dentists and dental care professionals have a key role to play in the journey of the mouth cancer patient. Involved in the prevention, diagnosis and delivery of oral healthcare before, during and following mouth cancer treatment, dental professionals are essential to the delivery of patient care. This article will explore and consider the priorities of dental pre-assessment and the subsequent delivery of oral healthcare in the context of the different oncology treatment strategies utilised and in end-of-life care. The significant side effects of radiotherapy will be reviewed and clinical dental considerations presented using the existing evidence base and available guidelines. Ensuring mouth cancer does not result in dental disease is an important role for all members of the dental community.”

4-Lewis, M. A. (2018). Mouth cancer: presentation, detection and referral in primary dental care. British Dental Journal, 225(9), 833-840.

Abstract: “Mouth cancer can present as a variety of abnormalities and visible changes affecting the oral mucosa, including ulceration, swelling and areas of erythema. The five-year survival from mouth cancer is poor at approximately 50%. Detection of the cancer while less than 2 cm in diameter with no metastasis greatly improves the outcome for the patient. Although many cancers in the mouth develop from what was previously an apparently normal mucosa, some arise in pre-existing conditions that are therefore regarded as potentially malignant. Regular assessment of the soft tissues within the mouth and the neck for the presence of abnormalities is an essential component of primary dental care. Any persistent and unexplained abnormality requires referral for definitive diagnosis and specialist management.”

5-Brocklehurst, P. R., & Speight, P. M. (2018). Screening for mouth cancer: the pros and cons of a national programme. British dental journal, 225(9), 815-819.

Abstract: “The paper highlights the pros and cons of a national programme for screening for oral cancer. It provides an overview of screening methods and the metrics used to evaluate a screening programme. It then reviews the evidence for mouth cancer screening against the criteria of the United Kingdom National Screeninhe dental management of a mouth cancer patient. g Committee.”

6-Beacher, N. G., & Sweeney, M. P. (2018). The dental management of a mouth cancer patient. British dental journal, 225(9), 855-864.

Abstract: “Dentists and dental care professionals have a key role to play in the journey of the mouth cancer patient. Involved in the prevention, diagnosis and delivery of oral healthcare before, during and following mouth cancer treatment, dental professionals are essential to the delivery of patient care. This article will explore and consider the priorities of dental pre-assessment and the subsequent delivery of oral healthcare in the context of the different oncology treatment strategies utilised and in end-of-life care. The significant side effects of radiotherapy will be reviewed and clinical dental considerations presented using the existing evidence base and available guidelines. Ensuring mouth cancer does not result in dental disease is an important role for all members of the dental community.”

More Articles to come….