Earlier this year, NNA came across the blog poster by Anna and detailed later in this article. This stimulated our decision to schedule brain tumours as our lead “Living with …” article this summer. Thanks to Anna for sharing this story with us in such detail. We wish her the best.
Until January 2015, I was a normal 23 year old woman. I had graduated with a first class honours degree and was living and working in Portsmouth. I played netball and went to the gym around 5 times a week. I was fit and healthy.
On January 9th 2015, I was getting ready to go to the pub with friends; this is when my normality flipped upside down. I had a seizure and collapsed. Although I remember none of this, an ambulance was called and I was rushed to hospital for scans on my brain. Whilst in hospital I had a further two seizures. I was told that my scans showed a lesion on my brain. An awake biopsy operation revealed the worst news; the most unexpected news; I had a terminal brain tumour, a grade 3 anaplastic astrocytoma to be precise, and I was given an average of 3 years left to live.
At a time in my life where I should have been building my career, enjoying being young, spending time with family and friends, and creating a life all of my own, I was having to come to terms with the fact that I was dying. I knew I had to be strong. I knew a positive mental attitude would be the only way I could stay mentally stable during this horrific time in my life.
I was extremely ignorant of anything relating to brain tumours before receiving my diagnosis, through no fault of my own. In fact, I had never heard of anyone talk about the illness prior to it colliding with my world. Since diagnosis however, the facts and statistics I have learnt shock and anger me to my core.
As a result of this, I decided to start writing a blog, Inside My Head, with the aim of raising awareness. I then tapped into my captive audience, which now stands at 113,000 readers, and began fundraising. Since the beginning of March 2015 I have raised around £70,000 for the Brain Tumour Research Campaign.
I was originally told that the two differing locations of my tumour were inoperable, however, after seeking a second opinion, the surgeon resected part of my tumour on March 17th 2015. This unfortunately did not change my diagnosis, but it just relieved some of the pressure on my brain, and gave the tumour more room for growth in the future.
All of the treatment, including this operation, is merely seeking to prolong my expected lifespan; I have been told it is incurable.
I proceeded to undergo 33 sessions of radiotherapy, taking temozolomide oral chemotherapy alongside. I had my radiotherapy sessions Monday – Friday, but took chemotherapy for the whole course. All in all, I was travelling to hospital for 7 weeks.
This was the part of my treatment I have struggled with the most so far. Up until that point, I was fortunate not to suffer from any major side effects, other than piling on weight due to my enemy, steroids! These 7 weeks however seemed to batter me, both physically and mentally, and I also lost my hair. But hey, I made it through, and on hearing other patients’ experiences, I think I actually had it reasonably easy.
I had a short break and then began a 12 month course of intensive temozolomide chemotherapy. Other than sickness for the first couple of doses, and intermittent extreme tiredness, this actually flew before my eyes. I completed this at the end of May 2016, and I now await my scans at the end of July. I am so desperately hoping for a stable result, so please wish me luck!!!
I try my best to keep upbeat and focus on the positive things I have achieved since my diagnosis, but at times it is so hard and the brutal reality breaks me down. I do think it is important to let these emotions overcome me at times; it is only natural. Yet, what people find bizarre is, I have actually never been as happy as I am now. My diagnosis did change me, it did change my life, but mostly for the better, bar the glaringly obvious. I have a purpose in life now with my awareness raising and fundraising; I feel like I am making a real difference.
Through the writing of my blog I have had some amazing opportunities, I have been on television, featured in some of my favourite magazines and newspapers, and I have met and spoken to incredible people, and, I have even won awards! I was invited to attend The Houses of Parliament to aid the Petitions Committee in producing their inquiry report by sharing my experiences with them. Since then, the Petition on Increasing Funding into Brain Tumour Research was debated at Westminster, and I was fortunate enough to be there to witness this great debate. This was truly an honour and it felt amazing to be part of something so positive both in terms of democracy in general, and an event that truly put brain tumour research on the political agenda.
On another more personal note, I met a special someone very shortly after my diagnosis; he proposed to me in December 2015, and we are set to wed in September. Being dealt a terminal diagnosis really shouldn’t mean you should stop living life, we all deserve to be happy. I am fortunate enough to have an incredible support network around me who have helped me stay this strong, and I fight each day to beat my diagnosis and make the most of every day I am lucky enough to be alive.