In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Anna was diagnosed with a brain tumour after experiencing facial spasms and her face began to look asymmetrical. For many years she declined any intervention or conventional treatment, preferring instead to trust her own instinct and to “watch and wait.” But, when a scan revealed growth, albeit minimal, she had an important decision to make.
Five years on from my diagnosis, I faced a crossroads. I would have to make an important decision. Things were confusing and I didn’t know what to do.
Whilst I had had more tests and scans than I cared to count and have listened to numerous “second” opinions, people were usually shocked to hear that since I was diagnosed with a brain tumour I hadn’t undergone any treatment; there had been no surgery, not even a biopsy to collect cells for examination.
“Sure, conventional treatments such as radiotherapy and invasive procedures including biopsies were offered but I decided instead to listen to my intuition and to the people I trust and to do nothing.”
This “watch and wait” approach was opposed by some doctors but I believe I made the right decision and, as a result, led a more or less normal life for six years following diagnosis.
I was diagnosed in December 2012 after travelling home to Prague to spend Christmas with my parents Ivana and Petr and my brother Martin. The last time we had been together was in September when I was starting my degree in politics and international relations at the University of Kent in Canterbury. Three months on, they noticed changes in my face which had started to look asymmetrical.
Previously I had experienced facial spasms which were put down to exam stress during my final school year and I had continued to take supplements such as magnesium. We had really thought no more about it but with this new change in my appearance, I agreed to go for a check-up.
The results were due the day before I was to travel back to England but the chain of events meant I never made the flight. Mum attended the appointment with me. The neurologist had a martyred expression on her face as she told us there was something on the scan. I recall how I pushed Mum away as she reached out for my hand. I was plunged into shock and unable to take in what I was being told.
Things moved pretty fast from there. I was kept in hospital and had another MRI scan and a lumbar puncture to check for any infections. Admitted overnight, I told only a very few close friends and my boyfriend at the time what was happening. The next doctor we met with seemed so young. He delivered the news that there was no infection and that I probably had a brain tumour.
“A lot of things were going round in my head including would I be able to finish my studies or would this put an end to all of my plans. I asked: ‘Am I going to die?’ He said we’re all going to die one day. Surely there must have been a better way for him to answer that question?”
Looking back now I realise I am extraordinarily grateful to my parents as they agreed we would carry on with our lives. I would go back to uni and then return for another scan in a month or so but, until then, it was going to be business as usual. For a short while and, after seeing a psychiatrist, I took antidepressants and the benzodiazepine Xanax but was conscious of how addictive this can be and I stopped after a few weeks. The first year or so after my diagnosis my symptoms were really mild and I was doing OK and so things didn’t bother me too much.
As a family we had always been sceptical about conventional oncology medicine. We had seen my grandfather reject chemotherapy and radiotherapy when it failed to help his lung cancer and he lived for another ten years without any treatment. In my case, treatment options were limited and we felt we had to be very careful about any choices we made and to make sure we listened to differing opinions.
In any case, there are very few options. The location of the tumour means it is inoperable; it would take several hours to reach it to take samples for a biopsy and this would put me at high risk of a stroke, which could leave me disabled. Chemotherapy and radiotherapy can be barbaric and seem to me to be very unmodern and, I think in my case, would cause much more harm than good leaving me worse off.
I count myself lucky that as a family we have a lot of friends who are doctors and others who work in the medical field so there have always been people around who we could talk to and ask questions of.
“As I look back, I honestly think that had we listened to the first doctor we spoke to I would have gone down the path of conventional therapy, would have spent years in and out of hospital, would have undergone surgery and would possibly be dead.”
It was university reading week when I had my PET scan. This time there was nothing active to see, as my tumour was dormant, low-grade and could well have been there since I was born. It was identified as a grade one or two diffuse intrinsic brainstem glioma. The brainstem is a crucial location as it is difficult to access and controls so many things including breathing, swallowing, speech, and facial muscles. While I am unlucky that the location of the tumour means it is inoperable, I counted myself lucky that my symptoms could be so much more severe than they were.
The mildness of my symptoms allowed me to be mostly in denial about my diagnosis for around two years. But as the asymmetry in my face worsened I also had increased psychological issues. I would go home to Prague where my parents became increasingly anxious, the time between visits made the changes more pronounced.
“Whenever I was due to have a scan, my senses heightened and I would become more and more paranoid about every possible symptom which might suggest the tumour was growing. I also started to suffer from panic attacks and anxiety.”
University became my safe place, very few people knew what I was dealing with. Mum began to think I should have a biopsy but I was against it. The risks were too high. All the time my dad had been researching possible treatments and talking to doctors in many countries and our differing opinions caused a lot of tension which was affecting our relationship.
In consultation with my neuro-physio nurse, I started to have Botox every few months and this helped with the muscle spasms which plagued me and meant my face appeared more symmetrical. To start with I was very sceptical, as I am about everything, but agreed to give it a go. Of course you have to be very careful as things can go wrong – as they have for many people – but I have had great results and it made a big difference to the way I felt about myself.
I also adapted my lifestyle in order to cope with my symptoms and the anxiety that goes with my diagnosis. For example, I meditated every day (and still do), I liked to exercise by walking or cycling and I practiced mindful breathing. I don’t really drink, I am careful about what I eat and try to stay away from processed sugar and dairy.
Throughout all of this I was able to continue my studies and I graduated in 2015 and moved to Birmingham where I started working for a refugee charity followed by another role at Citizens Advice.
Although I had previously been in denial about my diagnosis, I found that as my symptoms became more pronounced I became more interested in finding out about the disease. Having previously been very selective about who I told, it was a really big decision for me to start my blog – Anna's Brainstorm: Life with a Brain Tumour and Beyond – but I am very grateful that I did because it has helped me enormously.
I write when I feel I have something to say and I write to connect with people. The blog opened a door to a whole new world and has been a form of therapy for me. One of the most important ways in which it has helped me has been in allowing me to express how my diagnosis has affected my mental health and it helps to be talking to people with similar issues.
In June 2017 I started a new job as PR Assistant at the Brain Tumour Research charity. When I saw the recruitment advert it was serendipity as I wanted to be in an organisation which made sense to me, somewhere where I could contribute in some way and I felt this was where I was supposed to be.
Working at the charity I met so many amazing people and had the opportunity to find out so much more about this disease.
Physically I was in good shape and striving to live my life to the full but there was a cloud of uncertainty above my head. I knew that somewhere down the line I would have to take action, but no-one could tell me with confidence when the right time might be and what that action should be. It was a frustrating time but I remained hopeful.
I left the charity in 2019 to begin a Masters in Psychology at Oxford Brookes University.
It was the same year that I started noticing more symptoms: my balance was affected which meant walking became more difficult.
Then, in January 2020, an MRI indicated that there was a risk of me developing hydrocephalus. The doctor in the UK said he wouldn’t put me on radiotherapy without first having a biopsy.
After much soul-searching, I went ahead with a biopsy at the John Radcliffe Hospital (JR) in Oxford which confirmed I had a grade 3 anaplastic astrocytoma. I started a course of radiotherapy in April 2020 which was quite intense and was really messed up by the COVID pandemic. It was mentally quite challenging going to a deserted hospital where there was little or no support and I couldn’t even go for a cup of tea. I found it really exhausting, especially the last few weeks and it seemed to make my balance even worse to the extent that walking was not easy at all and I started to use a wheelchair.
It also meant I had to pause my studies.
“I was pushed to have chemotherapy but refused because I didn’t want to put my body through more stress with no guarantee it would be of any benefit.”
I eventually felt better but wasn’t happy with the standard of care and wasn’t offered any follow-up scans either.
Six weeks later, I was in Prague when I started to have really bad headaches. A scan revealed I had hydrocephalus and I underwent an emergency surgery to fit a shunt which saved my life. Without this, I would have died.
The doctors in Prague didn’t push me to have chemotherapy and were happy for me to ‘watch and wait’. I am lucky I have people who support me in my decisions.
Since early 2021, scans have shown the tumour to be stable and even getting smaller. However, the effects on my coordination and balance on the right side of my body are such that I need to use a stick to walk short distances or use a wheelchair to go further. Although I am right-handed, I have had to learn to write with my left hand.
Since having the shunt fitted, it has been similar to having had a stroke in terms of my facial palsy. It has made it harder for me to speak, eat and swallow.
The loss of mobility has been a big issue as I have always been a very independent person. Luckily, I have made new friends who have similar issues and am about to set up a new organisation called BrainCzech to create a community for young brain tumour patients in the Czech Republic – a mix of information and support – as there isn’t currently anything here for them.
I am also offering meditation and relaxation at a centre for paraplegic patients which is a helpful focus for me and of course I still regularly write my blog.
“It has been bittersweet leaving the UK which was my home for 10 years, but the cancer statistics in the UK are so much worse than in the rest of Europe.”
I feel more supported in my decisions about my care here in the Czech Republic.
“If I had stayed in the UK following my radiotherapy without any scans, I am sure I would be dead by now.”
In many ways I feel grateful to my brain tumour, it has made me realise what the most important things in life are. It has given me direction and a focus. We all have obstacles in our lives, this one is mine. After all, it is going to be with me for the rest of my life and so I had better make the most of it.
I believe my positive outlook on life really helps. I try to find meaning in whatever I am doing. It’s no good having a victim mentality. You just have to try to do the best with what you have. I am prepared to face the worst and try to find joy, daily, in every little thing.
When the sun shows up, I prepare a lovely cup of coffee, the passer-by smiles at me, I pet a dog, see something interesting or provocative, listen to a nice song, eat a delicious lunch and meet a friend who I haven’t seen in years. These are my little moments of everyday happiness.
“Life is the way we create it to be. Every one of us is a conductor of our own contentment. According to Confucius: ‘we all have two lives, and the second begins the moment we realise we only have one’.”
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.