Donate to help Jess fight cancer and NF2

Hi, I’m Jess and I have been living with a rare condition called NF2 since I was diagnosed at 8 years old. NF2 involves the growth of multiple benign tumours throughout the nervous system, most commonly seen in the brain and spine. I have undergone many surgeries, chemotherapy and radiotherapy as a way of managing my NF2. Having NF2 and treating NF2 has resulted in multiple disabilities such as total Deafness, visual impairment and balance loss but I have lived a very full life despite all of this, or perhaps it is in spite of all this.

In the New Year of 2023, I began to develop speech problems and also struggled to read, write and type. My MRI scan revealed a meningioma (a type of tumour commonly seen in NF2) in my brain that had grown from the size of half a pea to the size of a small orange in just 6 months time. We do not usually see such rapid growth in NF2, the tumours normally grow very slowly, so this was a great cause for concern. I had surgery 3 weeks later and it was considered a success, however, a week later the biopsy results came back and revealed that the tumour was unlike a normal NF2 meningioma, which usually are Grade 1 Benign tumours. It was in fact a Grade 3 Malignant Meningioma, cancer.

Along with this devastating news I learned that I must surrender my driving licence for 2 years. My independence was lost in the blink of an eye and as a free-spirit by nature, this was by far the hardest part of all. I have spent 3 months trying to come to terms with a whole new world before I’ve felt ready to open up about it to more than my immediate family and closest friends.

To reassure my fellow NF2 warriors, the chance of a Meningioma being a Grade 3 tumour is less than 1%. For me, this is called a ‘Secondary’ tumour, which means that it started out as a benign tumour (Grade 1 or 2) and transformed into a Grade 3 tumour rather than appearing as a new Grade 3 tumour, which is called a ‘Primary’ tumour. No one knows why this happens. I was the first person with NF2 in the UK in over 30 years to have Grade 3 meningioma that was not induced by radiation treatment so no doctor within my country has direct experience with this, they could only compare me to the next closest thing but even that is very rare. In a desperate attempt to find other NF2 patients with a similar experience, I reached out to the global NF2 community but I only found 3 people. My doctors reached out to other doctors who had treated people like me in the USA and France but the number of people you can count on just one hand. So there is very little research and data on the issue of Grade 3 malignant meningiomas in NF2 and the general population. However, what we do know is that the likelihood of this type of tumour reoccurring in the same place is around 50%. This means I am at high risk of the tumour coming back in the same location due to the possibility that there are still microscopic cancer cells that the surgeons couldn’t see (through no fault of their own). There is also a risk that any microscopic cells could invade other parts of the brain and body but it is rare for this type of tumour to behave that way. I will have MRI scans every 3 months from now on to keep an even closer eye on what is happening inside of me.

With these risks in mind and from the information I gathered from other patients and doctors, I spent many weeks considering the radiotherapy treatment my doctors were recommending to attempt to eliminate any of those microscopic cells that could still be there. This was an incredibly difficult decision for 4 main reasons: 1) that radiotherapy has its own risks, such as causing new malignancies 2) that I have already undergone radiotherapy 5 years ago and it’s not good for general health 3) the potential need for more radiotherapy in the future on tumours that are surgically difficult to access 4) that there is next to no evidence that radiotherapy is the right thing to do for people in exactly the same situation as me, simply because it has only happened to a handful of people worldwide. It has been one of the most difficult decisions I’ve ever had to make for myself but finally, in a matter of days before I was due to start it, I decided that I would go ahead with the radiotherapy. I will have treatment sessions 5 days a week for the next 6 weeks, starting on Monday 24th April, and leads on to how you can help….

Since we live a 4 hour round trip to/from the hospital I am treated at and the need for my husband, Danny, to continue working as much as possible to pay our household bills, there are a lot of logistics to be arranged over the next 6 weeks that will prove costly. By donating to my fundraiser you will be helping towards:

- Fuel costs for the people driving me to the hospital or train tickets when I go by myself

- Work compensation for the time off Danny needs to take in order to attend some treatment sessions with me

- Accommodation costs for the times I stay in Cambridge to reduce the amount of trips I have to do (which will be exhausting on top of the exhaustion from treatment)

- Basic living costs for the times I stay in Cambridge

It would be a huge help to have £100 per week to go towards these costs and I have therefore set the fundraising target for £600. If this target is surpassed beyond need or if there happens to be any excess money left over from my budget then I will be donating the remainder of the funds to NF2 Biosolutions UK & Europe who are a patient led non-profit organisation working to find better treatments and ultimately a cure for NF2. So this fundraiser is two-fold.

During the 6 weeks of radiotherapy I am likely go to feel tired, fatigued, nauseous and experience hair loss. All of this and the amount of time spent at the hospital during the beautiful spring time will undoubtedly take a toll on my mental health, as will the anxiety of my future with cancer and NF2. So, any donations or simply words of encouragement if you can’t afford to donate during this financially difficult time for many of us they will be hugely appreciated and lift my spirits.

People living with NF2 desperately need better treatment options and although a cure for NF2 will not likely be available in my lifetime I believe it will be possible for future generations and this is what NF2 Biosolutions will achieve with our support. You can find out more at https://nf2biosolutions.org

Additionally, as the month of May is NF2 awareness month, I would also like to post a copy of the book ’Living with NF2: From Us to You’ to everyone that donates as a way of thanks and raising awareness. So please be sure to contact me with your home address. This book was produced by the global NF2 community and funded but the Community Interest Company that I run called ‘Can You Hear Us? C.I.C’. https://www.canyouhearus.co.uk

Thank you, from the bottom of my heart!! ❤️‍