Yvette De Souza, 35, began having a tingling sensation in her right foot as 2020 got underway. She originally thought that it may have been a result of straining her back and pulling a connected muscle or nerve.
But a few days later, she was also having twinges in her right hand. She was seeing an osteopath to help her sore back but her foot and hand were not getting better and it was also feeling cold to her but not to the touch of others. So, Yvette visited her GP in Ashford, where her parents live, who referred her for a carpel tunnel test. She sought a second opinion through her employer’s private healthcare and saw a spine specialist and she had a full spine MRI, which came back clear.
She was referred to a neurologist and she had a second MRI, this time of her brain, which revealed the mass on her brain. She was contacted and told to attend the hospital urgently to discuss the results of the MRI scan.
Yvette, who is an Early Careers Programme Manager, said: “I thought the twinges in my hand were strange but nothing serious. It was a dull feeling, not debilitating, so it didn’t really bother me. The neurologist didn’t think that there was anything too sinister happening as they said that I looked, felt and acted fine.
“I had none of the more ‘usual’ symptoms of a brain tumour such as headaches, seizures, or eye pain. In fact, the brain MRI scan I was then sent for was ‘just to be sure’. But I knew that something was wrong.”
Yvette was told that she had a brain tumour the size of a tennis ball and that she needed to have surgery to remove it as soon as possible. However, the operation was unavoidably cancelled at the last minute as, due to the Covid pandemic, no beds were available in the ICU at St. George’s Hospital in South London which are legally required following brain surgery.
Yvette was contacted a few days later, on her birthday, and was offered the operation for the following day. So, she spent that evening back in hospital once again preparing for the surgery, which then took place on the day when the Covid pandemic was officially declared.
The six-hour operation successfully removed around 80% of the tumour. Due to Covid, Yvette was sent home two days after her surgery which was deemed safer due to the pandemic. There were two people in the ward instead of the usual six. She had trouble with her grip and walking immediately following the surgery but luckily, she made a good recovery otherwise.
She returned a week later to have the staples removed from the surgery site and she was given the heart-breaking news that the tumour was thought to be diffuse Grade 3 or 4 astrocytoma. She continued to use the private healthcare through her work to have radiotherapy and chemotherapy at Mount Alvernia Hospital in Guildford to ease pressure on the NHS during the pandemic.
She had six weeks of radiotherapy followed by 12 rounds of chemotherapy, which ended in May. It was later confirmed that the tumour was Grade 2, which is a lower grade than originally thought.
Yvette had radiotherapy sessions daily Monday to Friday throughout the first lockdown so she had to leave the house regularly when those around her were staying behind closed doors. Yvette had fatigue and digestion problems throughout her treatment, and she also lost her hair.
Yvette said: “I always felt very safe – the hospital had it all set up to minimise contact so I could get the treatment I needed. But it wasn’t easy as my partner could not come with me, I had to shield even before I received the letter about it, and all our food was on home delivery. So, the hospital trip was the only outing I made.
“Losing my hair was really upsetting, I love my hair. But, in a way, the pandemic helped that as we have not been out. We had two weddings and my performance in a dance show scheduled in but all that was obviously cancelled. It’s strange but maybe it was the right time for this to happen to me.”
With her treatment at an end, Yvette will now have regular scans to monitor her condition. She is back working from home part-time and is looking forward to getting back to her dance classes when Covid restrictions allow it.
Yvette said: “I have felt that my confidence has gone down during all this – I do feel nervous about getting back out as it has been so long. It is odd now to have people, noise and commotion around you – I went to the optician for a check-up recently and I thought that I was having a panic attack. I am so used to being cocooned away through all of this.
“But my life was busy before and I need the opportunity to know what I can handle again – I won’t know how that will be until I can try. But that first trip out to enjoy a cold glass of Prosecco and a fancy meal out will hopefully be fantastic.”
Throughout the emotional upheaval of her diagnosis, Yvette has turned to the support services offered by The Brain Tumour Charity, which is the world's leading brain tumour charity and the largest dedicated funder of research into brain tumours globally. Her partner, Huw, is now raising money for the organisation by taking part in a virtual London Marathon and secure a place in the Berlin Marathon.
Yvette said: “The Charity’s closed Facebook groups have been so helpful, especially during Lockdown when I haven’t been able to see my friends and family for the support they would have otherwise given me. It is also great to be in touch with people who are going through the exact same thing with me and ask them for advice on what I may be feeling or experiencing. Huw knows this so supporting them in his way was an obvious choice.
“March is my birth month and the month when I began treatment for my brain tumour. Suffice to say, March will never be forgotten for me. Brain tumours are indiscriminate - they can affect anyone at any age and symptoms do vary much more than people may realise. That’s why it is so important to always question, be inquisitive and if not happy with an answer from your GP then keep on pushing to get the right answer.”
Huw has been training for his fundraising challenges throughout the pandemic, including completing a couple of half marathons, alongside providing Yvette with valued help and support.
Huw added: “Having understood more about this in the last year or so, the funding given to brain tumours compared to other cancer types is very disproportionate. Like Yvette found out, the symptoms are so varied that it also makes it hard to immediately pinpoint a diagnosis.
“The Brain Tumour Charity really helped Yvette – I know the social media groups have been a great source of information. She has been able to find out about other people’s stories, their challenges and the steps they have taken to return to normality.
“Running and training for these events did require a real effort to get out of the house, especially in the cold weather, but it’s been the best motivation to help the Charity.”
You can support Huw's fundraising here.