Imagine being on holiday on the other side of the world and getting a call in the middle of the night from your twenty-five-year-old daughter telling you she has just been diagnosed with a brain tumour and is having surgery in two days time. This was the nightmare scenario for my Mum.
I had been a very independent person who didn’t need much from my parents. I went to boarding school when I was 8 yrs old to 16 and then between 16
and 25 I was just doing everything but spending time with my parents. Until 2008 when I was diagnosed with a brain tumour. My parents had to rush back to the UK and made it 20mins before I was wheeled into surgery for a 10-hour operation.
“I spent all night trying to get a flight home. Thank God for the time difference and Malaysian Airlines who got me and Claire’s Dad a flight that arrived at Heathrow at 6.30 am the day of Claire’s operation. It was the longest flight ever. We called the hospital from Kuala Lumpur, on our one-hour stopover to say we were on our way.
It broke my heart watching her being wheeled off, unsure whether she’d get through the operation. We’d been shown her scan and the tumour was massive. Because the operation was going to take several hours and we were jetlagged the nurses advised us to go home but when we got there we were too frightened to fall asleep so ended up going back to the hospital” – Mum
Post-Brain Tumour Surgery
10 hours later, my parents were told the operation seemed to have gone well and the surgeons had removed a 10cm meningioma. Now it was a waiting game until I woke up and they could assess the effects of the surgery.
Fantastic news came from Dr Minhas. He told my parents he was able to remove the entire tumour in one go and was sure it was non-cancerous. The downside was I had a visual field deficit, speech and cognitive deficits. He said I was likely to have disconnection syndrome, which would cause problems with paying attention, impulsiveness, negative behaviours, anxiety issues and possible inability to quickly process information.
I became a toddler again. My mum was helping me walk, talk and even feed me sometimes. She would take me to all my hospital appointments, rehabilitation appointments and was my carer. It wasn’t easy as both of us were not used to having that much time together and me being so needy.
“It was a blessing I was retired and had the time to support Claire. Despite the arguments, I knew Claire couldn’t help herself and I bit my tongue so many times. I knew anything she said, would be forgotten about within minutes and not take things to heart” – Mum
From what started as a lot of disagreements and hand-holding, we started working as a team.
Radio Mother and Daughter Duo
To come to terms with my new me and disabilities. I set up a blog called Aunty M Brain Tumours and I wrote a book to express myself and allow family and friends to understand me and why I was not the same person I was before my surgery. I wrote the book in 2012 called ‘A Brain Tumour’s Travel Tale’.
It was in 2012 I needed some publicity. I came across Croydon Radio and was set up to have an interview. I was petrified because I struggle with word-finding, post-brain surgery. I used to be a lot worse at speaking than now, but have come a long way from 2008. I still struggle to find words and sometimes say the wrong word, for instance. I still say ‘I can’t find my feet’ instead of ‘I can’t find my shoes’.
Long story short, I persuaded Mum to come in with me, for the interview, on the radio and my mum did most of the talking about my book. If I talked and was struggling to find a word, she would jump in with the word for me. She always knows what I am trying to say, well, most of the time.
“I didn’t really want to do anything to do with the radio interview, and I surprised myself that I stepped forward” – Mum
The interview was a success and the radio presenter said if I wanted a slot on the team, they were looking for volunteers. At first, I said ‘no’ but then I said ‘can I think about it’. I went home and wondered if this was a good idea and what could I talk about.
I was not in a position to do this alone. I suggested me and Mum would become a duo and do the show together. I was so excited when she agreed. We wanted to help people like us affected by a brain tumour in some way. I came up with an idea to have a feel-good show with positive music and positive interviews with brain tumour charities, patients, survivors, doctors.
I came up with the name The Brain Tumour Thursday Show, as there is a hashtag in the world called #braintumourthursday, a day where people give statistics and raise awareness for the disease. I didn’t know if the radio producers would go for it but to my surprise they were interested.
We started as a radio duo, we went on the help promote brain tumour awareness and joined campaigns and rallies. Our radio show went well and subsequently, we went on the road to do a book tour around the UK. We recorded Podcasts for the days we weren’t in the studio. Everything was done together. The radio finished in 2016 but, it had been the most amazing experience. I loved being a team with my Mum.
“It was a great experience and my knowledge of music expanded no end. We always tried to play positive tracks and find the songs requested by our listeners” – Mum
I had no idea how chatty my mother could be until the radio. Once she gets talking she can’t seem to stop. I am a lot more reserved and relaxed on the outside. My mum has a great sense of humour and is very intelligent. She knows so much about so much. I learn so many things from her. We never talk about my love life or anything personal but we could be the next Gogglebox team as we always have a different opinion on everything except on day time tv. Happy to watch Home and Away or Neighbours. Our way to keep both of us close to my brother in Sydney.
I know if my Mum hadn’t of said yes to the radio show I wouldn’t be where I am today with a following of over 16,000. Aunty M Brain Tumours has been a great success and gone from radio to online blogging and being a brain tumour support advocate. I have my Mum still checking. I can never thank her enough
“After the tumour was removed, I was sure things would be fine and Claire would recover. I was not prepared for the issues Claire would be left with and have never spent so much time in clinics. It was months of rehabilitation and trying to get the correct dosage of her epilepsy medication, seeing her have two grand mal seizures is something I can’t forget. I can understand why she still gets anxious and with all the work she does with her Aunty M Brain Tumours, she gets so so tired. We have had our moments but Claire perseveres and has amazed me how positive she is. I have to stop myself finishing her sentences when I can see her struggling for words and wait for the signal to help. We have become much closer and I am so proud of her achievements and the beautiful woman she has become, inside and out”. – Mum
When lockdown happened, it gave me time to re-write and add chapters into my original 2012 book A Brain Tumour’s Travel Tale: Cards on the table, I pooed myself. My Mum is like my personal Wikipedia/Grammarly. I run everything by her. It has been emotional reading the ups and downs of the last few years. But I feel very lucky to say my Mum has been there the whole time. I am very grateful for her patience and love.