This week member Jenn Millard shares her personal journey, in the hope to encourage awareness and to benefit any other members undergoing similar experiences and challenges with facial differences.
It all started quite unobtrusively with a visit to the dentist and a tiny “bubble” I had noticed on my upper cheek adjoining the gum line. The dentist took a little more notice and referred me immediately to a maxillofacial consultant at one of the large South East hospitals.
The first visit was fairly casual, an examination, a planned ultrasound and biopsy. The biopsy result arrived soon after and a meeting with the consultant followed to discuss an operation. The tumour was removed and diagnosed as Adenocarcinoma. Pathology results showed a link to breast cancer, so off I trotted to the breast consultant.
Not so much fun for a mature woman, no matter how attractive the consultant is! Several biopsies followed as well as MRI and CT scans. This delightful and knowledgeable man was in charge of my case. However…there appeared to be no obvious culprit as the primary source of the cancer.
Hooray, I thought, it’s over! We planned and went on two extensive holidays in the summer and I felt very well throughout.
Not so. Late that year I was once again back to yet another facial swelling and another lump in my mouth. This time the scan was swift, no biopsy and a full removal of my parotid gland and two further tumours located over and under the cheekbone. The operation was my not-so-joyful introduction to New Year 2024.
Subsequent consultant checks following the parotidectomy were peppered with comments like “please be patient” and “this can take up to 18 months to fully heal”. The consultants are excellent and their care is exemplary, however they are the “plumbers” who do the work, not much alternative consideration is given to an older woman with this fairly life changing surgery. Google offers a lot of information and some blogs and muscular exercises for this operation, however it does not touch on the psychological impact.
There have been further exhausting tests and scans where I have been probed and scanned to the nth degree. The result? I was told (smilingly and with a kind tone) that the Multi Disciplinary Team at the hospital now consider me a “medical conundrum” as the primary is still unlocated!
The full impact of the earlier parotidectomy is that my facial muscles on one side of my face do not obey instruction. I have a lot of scar tissue inside my mouth. My eye has never recovered and the ophthalmologist tells me it never will. It weeps slightly on occasion and the conjunctiva is slightly swollen, so my new spectacles are shaded and I wear sunglasses – a lot! Seven months later the muscles in my face are slowly coming to life, however my speech is not as it was and I don’t feel – at this point – it will ever be normal again.
I am self conscious. I am not a vain person, but I am a very social person. This has impacted my life to the extent that I started making excuses not to see people. Only a handful of very close friends are allowed into my new inner circle. My family either joke with me (which I love and join in) or stoically tell me I look great (they don’t know that I know when they are bending the truth!!). My hairdresser suggested a longer, layered bob which hides the scar and softens the wonky side of my face. I love them all for the comments and the unconscious support. Yet nothing has prepared me for this psychological battle. I have always considered myself a motivated, engaged and positive person. 2024 brought some lows I did not think possible. Her Majesty, the Queen once referred to her own “Annus Horribilus”. Well, 2024 to date, has been mine!!
All I can do is tell myself (daily); “Chin up, there is always someone out there worse off than you”. I plan ahead and keep moving!
There are flashes of beautiful light – we are planning two long holidays to South Africa and Italy in 2025. Writing, reading, gardening and amigurumi crochet keep me busy. Phone calls with family and friends, seeing my grandchildren grow, moving house recently and a lovely new garden have occupied my months. The Joy Club online exercises are a wonderful way of keeping fit remotely and I have been lucky enough to have a few scribbles published by this marvellous organisation – long may TJC continue!
Recently – and with great trepidation – I did my first ever recording of a piece I had written for The Joy Club (you can listen to this here). Thank you Marina, for such incredible support, great feedback and your kindness. As we talked, Marina shared some of her previous experience and work surrounding facial differences which was both informative and reassuring. I do hope she will share these with you and who knows – in the future another TJC member may benefit from this experience and know: you are not alone.
Jenn kindly asked me to add to this piece, having met and shared our experiences on this topic. I am Marina, Content and Events Producer here at The Joy Club. In 2017, I wrote, performed and toured in a show that explored facial differences. This project began because my comedy duo partner had a birthmark across her face and, particularly when performing on stage, faced many unkind comments and treatments. We decided to create a show to share the many stories of people with facial differences, which profoundly impacted me.
Reflecting on that time, I feel a deep sadness that the project has now concluded. It was incredibly tiring and hard-hitting, and there were times I questioned the difference we were making. However, seeing people stand and share their stories with us after each show made me realise the profound impact we had.
The most important part of the process in the show we created was the why; why we were doing this. To raise awareness of people’s experiences and highlight how kindness and consideration make such an important difference and impact to people living with a facial difference. And simply, to bring about discussion on the topic. I’m pleased to have the legacy of this project live on, to write here to share this and to remind everyone of the value of that simple word: kindness.
Our show was based on true stories sent to us by individuals with facial differences. We collaborated with two remarkable charities, creating a heavily researched theatre piece titled The Way I Look. It was a story for anyone who has ever felt different, exploring the relationship between identity and appearance.
I took on much of the writing, sifting through hundreds of personal stories to weave them into a cohesive narrative. This project deeply affected me, and I consider it one of the most important things I’ve done in my life. You can read a short interview where I discussed the show before it went on tour: Interview about “The Way I Look”.
I strongly encourage anyone affected by facial differences to look into these two charities:
- Let’s Face It: A support network for survivors and patients of facial cancer and other facial injuries. Their support groups do incredible work, with many people expressing the profound difference it made to speak with others in similar situations. More information can be found here: Let’s Face It.
- Changing Faces: This charity campaigns for facial equality, a cause we passionately supported in our project. Their efforts in raising awareness are crucial. More information can be found here: Changing Faces.
How wonderful that The Joy Club has brought Jenn and I together. Sometimes, you couldn’t script these coincidences! It has been a pleasure to write alongside Jenn for such an important cause: helping others. I hope that by reading Jenn’s journey, others will feel empowered and find comfort and inspiration in facing similar challenges.