Support when it is needed through the Mouth Cancer Foundation.

The Mouth Cancer Foundation offers vital support via a weekly safe-space Zoom meeting and a private Facebook group. Survivor Karen emphasises the group's support for patients and families in discussing issues, late effects, and combating isolation.

My name is Karen, and I was diagnosed in 2016 with tongue cancer. I thought I was healthy as I had never smoked, didn’t drink much alcohol, was a runner and was careful with my diet. I was 43 at the time, a wife and mum to 2 teenage children, and working full-time in a nursery attached to a school.  There was no public awareness of head and neck cancers at the time (and still too little to be honest.) My cancer started as a stubborn ulcer that wouldn’t heal, but during visits to my GP and dentist never any mention of the possibility of this being cancer.

There was no signposting to support groups online. I started going to a local face-to-face support group run by my cancer nurse who is now retired, but this was only every 3 months, and it shut due to COVID. COVID changed so much for many of us. It was just before this time that I came across the Mouth Cancer Foundation on Facebook and I joined my first Mouth Cancer Awareness Walk that the charity put on every year; my first one was September 2019 and I met the charity ambassadors, and more importantly I met other head and neck cancer patients and their family members and it opened up a new world of friendship for me.

COVID arrived and when everything shut down, the Mouth Cancer Foundation opened a new way of supporting with a few options. One option was a weekly Zoom meeting which I attended, and it was hosted by the friendliest dental hygienist, Jocelyn Harding, with a contagious smile. Jocelyn has immense expertise with head and neck cancer. The group started off small but over the years has grown. I became a patient ambassador for the Mouth Cancer Foundation as I was already supporting patients through my own awareness campaigns to educate people on the realities of these cancers. From here, Jocelyn and I began co-hosting this important platform of support that meets every Monday evening from 7-9pm UK time for patients and family members. (We have members from other countries join us too.) This support runs weekly throughout the year, because we recognise the need for support.

The meeting discussions are led by whoever joins and wants to interact. We have an active chat box for non-verbal patients and for patients who aren’t clear with their speech, to make sure support is inclusive. What do we talk about? Food, issues with PEGs as some of our members are now nil by mouth, intimacy issues and various late effects, tips and products that help us, death, mental health, appointments and lymphoedema. No subject is off limits in all honesty. We have patients joining us from each stage of their pathway, diagnosis, surgery, treatment, more cancer, late effects and if a caregiver is in the process of losing a loved one. We also encourage professionals to join and listen in and occasionally offer support if able. Jocelyn and I have created a weekly safe space thanks to the Mouth Cancer Foundation setting up this vital group.

We also have a private support group on Facebook through the Mouth Cancer Foundation, which I am the main admin for.  This is another safe space for patients and family members from across the globe and we have many professionals who join our group also. As admin, I ask anyone who wishes to join to answer 3 membership questions and have an unlocked profile as I check through to ensure whoever joins our private group is genuine as we have many vulnerable people within our group. Again, all topics are welcomed. The only thing we are strict about is posting of alternative protocols, which are not allowed in our group, for the safety of our members. Lymphoedema, issues with diet and either dry mouth or excess saliva, concerns after surgery or issues arising during treatment, and late effects. It is such a friendly and welcoming group, which is growing every day.

Support during any part of the head and neck pathway is vital, but we are all ready for support at different points. For me, connecting with other patients took away some of the isolation I was feeling. I had to leave my career behind early last year due to late effects from my treatment and not being properly supported. Because of what I have been through, I understand how hard this pathway is and can be. It is important for patients and family members to realise that they are not alone, and help, support and friendship is available through the Mouth Cancer Foundation.

To get in touch, you can reach out to me directly through social media under my name Karen Liesching-Schroder. Alternatively, there is the Mouth Cancer Foundation helpline which is run by Ali Lowe (dental professional) 01924 950 950

To gain access to the Monday support Zoom or the private Facebook group, please email:

info@mouthcancerfoundation.org

support@mouthcancerfoundation.org