In April 2024 our family was presented with the awful news that my sister, Charlotte, had been diagnosed with a very rare and aggressive form of cancer (Adenoid Cystic Carcinoma). This was a huge shock and naturally we are all now backing Charlotte through her treatment and doing everything we can to stay positive at this challenging time.

Charlotte is currently going through intense radiotherapy treatment that has impacted her energy levels and unsurprisingly made her feel very unwell. Seeing her approach treatment with such grit and determination has encouraged us to do something BIG that Charlotte can look forward to once the unwanted side effects of radiotherapy wear off.

Charlotte has always been the artistic member of our family – she’s brilliant at painting and is an amazing singer. She is also incredibly sociable and loves getting large groups of friends and family together to hang out and have fun. One of her dreams is to host a festival style gathering for friends and family – where anyone can get up on stage and show off their talent – so we can all celebrate one another’s gifts and have a bloody good time singing, dancing, and laughing together. It would also be the perfect opportunity for her to belt out a couple of Kate Bush and Regina Spektor numbers – something that anyone who knows Charlotte will know is one of her favourite things to do.

We are hoping to raise enough money to throw one heck of a festival that will inspire Charlotte to keep battling on like an absolute star, and that will give us all something to look forward to enjoying together later in the year. This includes finding a venue, providing refreshments, decorations and a few other logistical bits and bobs. We will be using the money raised here and asking for donations from local businesses where appropriate.

The festival will likely be a private event for friends and family – but on the night we hope to raise money for the Oracle Cancer Trust through entrance donations, fete style games and competitions, and an auction of promises.

Any money raised that exceeds the amount needed to fund this event will also be donated to the Oracle Cancer Trust.

Please read on to hear Charlotte’s story in her own words.

My name is Charlotte, I am 34 years old, and I have a 4 year old daughter, Polly. I live with her and my partner Martin whom I’ve been with for nearly 15 years. We have a dog and a cat and a beautiful, fortunate life. Although we are not very wealthy we are very lucky to have what we have. I love my life and everyone in it.

Unfortunately this year I was diagnosed with Adenoid Cystic Carcinoma and am facing a very uncertain future in which I may have only a few months or years left. ACC is a rare form of cancer affecting only 5 in every million people in the UK.

Early signs

In January 2024 I noticed a blocked nose without any other cold like symptoms. After waiting for it to subside on its own for two to three weeks, I went to the doctors but as they couldn’t see anything wrong I was sent away, twice. By the middle of February I started developing a tingling sensation in the right side of my face. As the nose didn’t clear and the tingling became burning, I went back to the GP and was diagnosed with Trigeminal Neuralgia. This might explain the burning sensation, but it did not account for the blocked nose. They referred me to ENT, but the wait to be seen was about 20 weeks! To put that into context that means that I would still be waiting now to be seen and would still not know about my aggressive cancer. The pain in the face worsened and I was sure that whatever was in the nose was causing the issues in the nerves so, with help from my parents, I had a private consultation.

The Diagnosis

The ENT doctor found a polyp in the nose and, to rule out anything serious, requested various scans and a surgical biopsy through the NHS. As a result of these investigations, on Friday 18th April I was called into an office where my consultant explained I had this rare form of cancer and that I may only have months left to live, the chances of being cured were in the single percentages area. It was an agonising time, one in which I told my loved ones the shocking news and tried to process the news myself. After the longest weekend of my life, I had another appointment with a new consultant in which I was given hope that surgery may be an option. It was explained to me over a few weeks that the plan was to surgically remove the tumour and then apply proton beam therapy to the remaining cells. Over those weeks I had more scans and an occlusion test, we also had to wait for a second opinion from Manchester, which was not quick in coming unfortunately. Some of the tests were very painful and all were scary but with support from loved ones I got through it. My family and I had hoped that after the surgery and proton beam therapy I might well be cured.

The Disappointment

As I said, the second opinion took a while to come through, in fact it wasn’t until I called Manchester myself, weeks after it was requested, that they set an appointment to talk to me. A week later the second opinion was finally given, and a date was set for surgery, it couldn’t be for three weeks because we would need the radiology team on hand in case the carotid artery was removed. During that time, I tried to relax, we went to Devon and had a lovely time, and I imagined a future in which the pain in my face would be long forgotten. I also wrapped my head around the significant side effects of the surgery, including double vision, loss of vision, a lazy eye, loss of taste snd smell, glue ear, need for a hearing aid, tinnitus, difficulty chewing, and maybe even a stroke or death. Finally, on June 3rd I went to the hospital for my surgery, I was as ready as I could be and was expecting not to be woken up until the following day. However shortly before the surgery it was explained to me that the cancer had grown much faster than ACCs typically do and the plan for surgery wasn’t as a hopeful option as it was a month ago. I was put to sleep for surgery but two and a half hours later I was awake again and knew at once things couldn’t have gone to plan.

Because of an excessive amount of blood loss during the surgery they had to abandon it early. They deliberated for about 30 minutes or so whether to continue but for my safety aborted the surgery, only taking a small amount out. It meant that recovery time was much quicker, and those side effects were not something I needed to worry about at all. I was passed over to the oncology team, whose care I am still under.

Now and the Future

Now I feel in really good hands, however my future is still looking quite bleak and the chances of a cure still very low. I am undergoing radiotherapy as I write this, I am halfway through a gruelling, six-week high dose course, this is in the hope that it kills many cells and puts the rest in a state of suspended animation. However, how long that lasts is unknown, it could be months or years. My cancer is a fast growing, aggressive type and that minimises the amount of time I have left.

We hope that the radiotherapy does the best job it can but we also look for clinical trials - scientific breakthroughs to save me! Which is why I ask that you help us to put on this event where we hope to raise money for Oracle Cancer Trust, because they are a team that are working hard to find a cure, and have already helped me and my family so much in getting expert opinions and wider support.

Thank you so much for your continued love and support, I cannot do this alone, and thankfully I don’t have to.