What is one thing you wish you knew before you started treatment?

Laura was eighteen and in her first term at university, studying International Relations at Kings College, London when she was diagnosed.

She’d signed up to join the Royal Navy University Corps and as part of the medical she was sent for an eye test. In the weeks before, she’d mentioned a few headaches, just like mild migraines but there were lots of reasonable explanations; studying, freshers week socialising, maybe she just needed an updated prescription from the opticians. Her Mum Nicola said "she’d mentioned an incident in which she’d gone from sitting reading text-books on her bed to waking up on the floor with a wet and bruised face. I had no idea what this meant but told her to speak to her GP about it. This just goes to show how completely clueless I was, I had no idea that this was obviously a seizure".

In November 2018 Laura was diagnosed with terminal brain cancer, given a prognosis of 12 months and told she wouldn't ever be going back to University. She has consistently defied the odds and 
in September 2019 she started at The University of Manchester.

Fast forward three years and Laura has had:

19 weeks of immunotherapy treatment in Germany
11 cycles of chemo
6 rounds of keytruda checkpoint inhibitor
4 units of blood
& 2 further brain surgeries.

In July Laura was awarded a 2:1 in Politics, Philosophy and Economics!!

Laura's Mum Nicola said "it's been so tough, working through sickness and fatigue and in little air b&b's in Cologne with dodgy WiFi, but she did it and we could not be any prouder of her"

Nicola has been so helpful right from the start of Stu's experience with GBM. Always on hand for any questions and support. Passionate campaigners for equal access to the latest treatments across the world and genomic sequencing as standard of care in the uk. 

If you’ve seen them interviewed on the news you will know that they are a dynamic team who have stuck together. 

Having found it frustrating and upsetting that tumour samples are not stored (as standard) in a way that would allow patients to access treatments such as oncoloctic immunotherapy Nicola is joining forces with Our Brain Bank to campaign for genomic sequencing as standard for brain tumour patients. 

I caught up with Laura to ask her some questions to give hope and hindsight to anyone who finds themselves in this boat.

That even when things are tough, with the pain or the nausea or the tiredness, ask for help. It doesn’t make you less strong and it’s not embarrassing, people are there for you and would love to do anything that could help you.

Is there something you have learnt through your research about personalised cancer treatment above standard of care that you think everyone should know?

That you can get your tumour tissue genetically profiled in the UK which should offer treatment options that may fall outside of the ‘Standard of Care’. You may need to fight for alternative chemo drugs but it’s important to get the ones which work best with your own mutations. 

Also, how important it is to get any tumour tissue removed in surgery flash frozen and properly stored so that it’s available for any future immunotherapy purposes. Unfortunately, this was not the case for me and prevented treatments that may have helped.

What did you change in your life to support any medical treatments you got - dietary changes, activity changes, supplements?

The addition of lots of supplements and full extract cannabis oil three times a day. We did try to follow a sugar free keto diet but found that it just wasn’t compatible with the impact that chemotherapy had on appetite. I could eat very little, so the family tried to provide me with whatever I felt like at the time, just to get some calories in. I try to keep active by going on walks but sometimes, due to joint pain or tiredness, it’s difficult to find the motivation. This is particularly disheartening as I was someone who was quite active before I was diagnosed.

What was the most difficult part of your journey and how did you overcome it?

Receiving the diagnosis was probably the most difficult time emotionally, dealing with the fact that my life and the lives of my family and friends had been completely derailed. Radiotherapy was exhausting and it was hard feeling so unwell and coping with the loss of her hair. It took time to register the diagnosis, it had ruined all my plans for the future, but I found that focusing on staying positive and taking one day at a time was the best method for me.

Do you have any advice to give about how to successfully fundraise to access personalised treatment options outside of the NHS?

It’s not easy! Getting a national charity on board to help share your story is very helpful as they have better access to media outlets. Sharing it everywhere on social media, ask for shares and retweets if you're comfortable with that and if you can get a celebrity or a politician on board to help you promote your cause that can be really helpful. I’m a very private person so this was hard for me, but the whole family became very passionate about raising awareness of the disease and lack of investment in research.

What advice would you give on how to best support a loved one going through brain cancer? 

Take your lead from them. I’m very pragmatic and quite laid back, so I was happy for my family to do all the research and advocate for me, but I know this isn’t always the case. Sometimes people want to talk about what’s going on and their emotions, other times not.

What was your biggest self-discovery or revelation after you were diagnosed?

That even if you plan your future and convince yourself you know what’s coming next, life can send you a curve ball and change the whole thing. This can be a bad thing or a good thing, depending on how you deal with it.

"I decided early on that I was going to put up a good fight and not let cancer get the best of me. I can be quite stubborn and love proving people wrong" 

How did you find the strength to go through the treatments?

I decided early on that I was going to put up a good fight and not let cancer get the best of me. I can be quite stubborn and love proving people wrong. However, when times got tough, I knew I had people in my corner cheering me on and providing the strength I needed to keep going.

How did you deal with the anxiety that surrounded your diagnosis?

I have come to terms with the fact that my life may be shorter than the average life span. I’ve become aware that just having more years doesn’t always mean your life will be better, it's what you do with those years that makes it a good life. 

What did you do to help you meet the challenges of your treatments?

I tried to distract myself by doing other things which would draw my attention away from my treatment and the challenges it presented. I did this in a number of ways such as listening to music, speaking to friends (those I knew from both pre and post diagnosis) and, when I could, going on walks.

What did others close to you do for you that made a difference?

This is a difficult question to answer as I have received so much support by people I know, and many that I don’t know. Fundraising has been essential to raise enough for my treatment and without so many donations, I doubt I would have been as well as I am now. My friends and family have adjusted to my situation and treat me like the person they have always known, not someone new who is vulnerable and desires pity. 

Did you join a support group? If so, how did it help? And would you be happy to recommend/share the link?

I applied to be a Young Ambassador for the Brain Tumour Charity and this meant I was part of a group of 22 young people whose lives had been impacted in some way by a brain tumour. We went on a residential weekend, allowing me to feel a degree of independence again and not just be the girl with cancer. It also meant I had a support group of people who understood what chemo was like, what impacts a brain tumour has on your life and why I was taking so many tablets. 

With the benefits of hindsight. if you or a loved one had to do it all again, what would you do differently when going through your diagnoses and treatments?

I applied to be a Young Ambassador for the Brain Tumour Charity and this meant I was part of a group of 22 young people whose lives had been impacted in some way by a brain tumour. We went on a residential weekend, allowing me to feel a degree of independence again and not just be the girl with cancer. It also meant I had a support group of people who understood what chemo was like, what impacts a brain tumour has on your life and why I was taking so many tablets. 

What three things would you tell a person who just yesterday learned of their diagnosis?

1. Find an online community who understand what you’re going through and can give relevant support and advice

2. Do your own research and look for additional treatments that are complementary to ‘standard of care’, get a second opinion if you can

3. Keep positive, despite what you might be told, there are long term survivors, and optimism and hope are so important

Were there any particular blogs, organisations, books, websites, journal articles, or people who were especially helpful with support and/or information?

Ben Williams ‘Surviving terminal Cancer’ is a brilliant book about employing a ‘cocktail approach’ to treatment.
We found the Brain Tumour charity to be really helpful and supportive, also the Care Oncology clinic, Patrice Surley and Professor Van Gool at IOZK in Cologne.