Please see my original story below, but here is an update, 6 months post diagnosis..

Half a year ago my life was flipped on its head & I found myself sharing this story. However, I regularly get asked ‘How are you?’ so I thought I’d try to answer that question …

What’s happened in the last 6 months?

*  I have completed an intense course of radiotherapy on the brainstem, 30 daily sessions over 6 weeks. I lost a bit of hair which isn’t growing back, and it utterly zapped my energy, but the routine of it was good and I can’t rate Portsmouth radiology and oncology highly enough. 🌟

* I have been forced to retire from teaching about 20-25 years too soon, and am missing my everything about it.

*  I am on a cocktail of medication including steroids, epilepsy medication, anti/sickness etc. As a result, my body has ballooned & I have a ‘moon face’ and an unrecognisable body shape, along with many other side effects to manage.  

* I have begun a clinical trial at the Royal Marsden hospital which is specifically for my rare mutation of brain cancer. It’s the first time in 20 years that there has been a development in treating this mutation of tumour. It is not a cure, its aim is to extend quality life. I could be taking the cancer meds or I could be on a placebo, but the trial seemed like the right thing to do for so many reasons.

* It has been the biggest rollercoaster in terms of energy levels, symptoms and mental challenge.. I’m currently able to do the school run daily which is a sign things are good. The most recent MRI  scan confirms there is currently no disease progression. 🙌🏻

* I have had the most amazing outpouring of love and support from so many people and every message, donation, card, bunch of flowers and smile hasn’t gone unnoticed, and has meant the world.

*  I have continued to communicate openly and educate my children, family and friends about what’s going on whilst trying to remain ‘me’. The hardest part of all of this is fighting to keep your identity when cancer is trying so hard to define you.

What next? 

* I will stay positive, and continue to live every day, enjoying small routines which I’ve been so desparate to get back. 

* I am planning in and enjoying some bigger, fun things with family and friends.

*  I will continue the trial until my body says otherwise. 

* I will continue to raise awareness and raise money for the Brain Tumour Charity including the Stubbington Twilight walk in March (https://www.justgiving.com/page/vicki-burgess-twilight-stubb)  

* I will continue to be open and honest with my children, friends and family. I am determined to defy the odds and live for years, not months! 🤍

My Story:

This is one of the hardest things I have ever had to think about writing, so please bare with me if it is not as articulate as it could be..

At the beginning of July 2023, I had the privilege of turning the big 4-0! Little did I know just a month later, I’d be diagnosed with Grade 4 diffuse midline glioma; a rare and aggressive form of brain cancer. In spite of having some debilitating symptoms, I mostly look ‘fine’ and am a ‘normal’ busy mummy of 2, wife, friend, daughter, sister, auntie and teacher. So needless to say this year’s summer holidays have looked and felt very different and have been quite the rollercoaster.

The news has been shocking and devastating but also life-affirming. Nobody can take the time they have for granted, but nobody deserves to have their time limited in such a way. I am living every day as it comes, grateful for all the time I am ‘okay’, recieving radiotherapy to extend my quality time, and enjoying being able to be fully present where possible. I am beyond grateful to be surrounded by an incredible network of love and support by my family and friends.

I really debated creating this page, because for me the priority is about protecting my family and keeping my children’s childhood special, simple and happy. It feels like a fine balance between achieving this and also raising awareness and money for charity. It also gives people the opportunity to help; which is all anybody wants to do for us right now.

I feel that if I can use the heartbreaking experience that myself and my loved ones have been going through to raise awareness, get some vital funding for Brain Tumour research, or help to save just one life, then it has to be done, which is why I decided to go for it.

Time to brace yourselves for some shocking stats about Brain tumours…

* Brain tumours are the biggest cancer killer of children and adults under 40.

* Over 12,000 people are diagnosed each year with a primary brain tumour, including 500 children and young people – that’s 33 people every day.

* Over 5,300 people lose their lives to a brain tumour each year.

*At least 88,000 children and adults are estimated to be living with a brain tumour in the UK currently.

* Brain tumours reduce life expectancy by on average 27 years – the highest of any cancer.

* Just 12% of adults survive for five years after diagnosis. Research offers the only real hope of dramatic improvements in the management and treatment of brain tumours.

*Over £700m is spent on cancer research in the UK every year, yet less than 3% is spent on brain tumours.

All of this is why the Brain Tumour Charity is my chosen charity. If anyone is able to donate, big or small- here’s a little bit about the fantastic charity you’ll be supporting and why it means the world to me;

The Brain Tumour Charity is the world's leading brain tumour charity and the largest dedicated funder of research into brain tumours globally. Committed to saving and improving lives, they’re moving further, faster to help every single person affected by a brain tumour.

The Brain Tumour Charity are set on finding new treatments, offering the highest level of support and driving urgent change. And they’re doing it right now. Because they understand that when you, or someone you love, is diagnosed with a brain tumour a cure really can't wait.

Thank you for reading and for any help you’re able to offer with raising awareness and funds,

Love Vicki & family 🩷 x