Keep Charlie alive and running from cancer

Hi, my name is Charlie. Apologies as this is a long one so grab a cuppa/snack/beer water and get comfortable! I'll try not to bore you to tears.

I am 38 years old and a mother to three amazing children and 3 awesome stepchildren. I am married to a legend of a Husband who has been my rock lately. I have been a nurse for 20 years and I love my job working as an NHS Matron. I am passionate about the great outdoors and when I am well I love to run (badly!) I may be slower than a turtle treading in treacle but I have completed 16 marathons and many more half marathons. I love to parkrun when I can get out of bed on time!

In September 2024 our lives were turned upside down. I had ovulation pain that would not subside (or in my words 'my ovary is exploding'!) I was swiftly scanned and a large tumour was found on my right ovary. A host of bloods and further scans were completed. On 7th November I had surgery to remove the tumour, my ovary and both fallopian tubes. Surgery went well and I was told that my tumour was a dermoid. These are freaky, mostly benign tumours that contain hair, bones, teeth and anything else that makes up the human body. Like a little alien. We even nicknamed mine Boris! Less than 1% of these tumours are cancerous so I recovered well in the knowledge that all was well, until it wasn't....

In December 2024 we received the news that not only did Boris contain Bones, Hair and teeth but he also contained brain cancer (medulloblastoma) and cancerous brain and spinal chord tissue. This is known as PNET (primitive neuro ectodermal tumours). These pesky tumours are incredibly rare, with less than 100 recorded cases in the world ever (I do like to be difficult). They are also notoriously aggressive. There are very few positive outcomes to PNET cancer.

In January 2025 I was referred to the wonderful Professor Seckl at Charing Cross Hospital. He is a renowned germ cell tumour expert and THE man that you want looking after you in the case of being unlucky enough to require treatment for this cancer. He ordered further scans and unfortunately these showed that my cancer had returned. I had further surgery in April 2025 with 3 tumours being removed and further biopsies showing that the PNET had returned. My cancer had become a Stage 3C cancer as it had spread to the other ovary, uterus, pouch of douglas and omentum.

I was lucky enough to have a charity place for London marathon and ran this 18 days after my surgery. The next day I received the news that the aggressive cancer had returned and I needed urgent chemotherapy. This began on 30th April. I was started on a brutal POMB/ACE regime consisting of 5 day stays in hospital away from home, followed by 3 days outpatient chemo every other week. The treatment was gruelling and has left me with many side effects including deafness, tinnitus and neuropathy which as a runner has really impacted my life.

Anyway, if you have got this far well done! I have now almost completed 16 weeks of chemotherapy and the good news is that my most recent scans are clear! My cancer has been paused! The bad news is that I now require immunotherapy costing £70000 and as my cancer is so rare it is not funded by the NHS. (Yes I know your Mum/Dad/Auntie/Uncle are having it on the NHS. I'm really really happy that they are and they do not have to beg for money like I am. Really I am. Unfortunately as my cancer is rare there is not enough evidence for NHS England to agree to funding and I am just 'one person' who will not benefit enough other patients to warrant clinical trials or NHS funding.)

So as a mother of 6, a wife, daughter, colleague, friend, fellow runner and just someone who wants to stay alive for a good few years yet, I am asking if you can please support me with crowdfunding for my treatment. Without the immunotherapy my cancer is likely to return and there are no positive cases of PNET without backup treatment. Every £1 will help me to reach my target. If you are unable to donate please please share this. If nothing else it might raise awareness. PNET has the best survival rates if caught early, listen to your body and if something doesn't feel right please get it checked out! This goes for any illness/lumps/bumps by the way.... we are experts in our bodies so listen to it!

If you've got this far without falling asleep, well done. Thankyou in advance for any donations/shares etc. I've never done anything like this before so I have no idea if it will work but I need to give this my best shot to see my children grow up and hopefully spend many more years working for our wonderful NHS plus getting back to marathon running in my spare time.

Love

Charlie

xxx