In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Angela Whicker, a mum-of-two from Milton Keynes, Buckinghamshire, was diagnosed with a brain tumour – later identified as a grade 3 astrocytoma – in November 2022 after suffering from focal seizures. The 45-year-old, who works for a housing association, underwent a debulking surgery and radiotherapy, and is now part-way through a 12-month course of chemotherapy.
Angela tells her story …
My life has completely changed as a result of my brain tumour. I had been sharing custody of my two children after separating from their dad, one week on, one week off, but now I only get to see them on weekends and school holidays. On the weeks I had them I would do the school run, go to work, pick them up and go home, but now I can’t drive and my partner, Freddie, works shifts so can’t always be around to drop them off and pick them up from school. I’ve also not been able to work since November, which is really frustrating, but I’m currently in talks with my employer about having a graduated return.
“I’d been getting pins and needles, and numbness, down my left-hand side for quite some time but I hadn’t paid too much attention to them.”
I’d been speaking to friends about it and one friend in particular was really pushing me to get it looked at. It’s thanks to her I did finally go and see a doctor. Having failed to get through to my GP surgery by phone, in November 2022 I decided to go to the walk-in centre in Milton Keynes. I was there an hour or so before being told I’d been referred to the mini stroke centre, which would contact me within a couple of days. Everything moved really quickly after that.
I was contacted the following day to tell me I’d been referred for an MRI. Later that same day I was asked to go to the hospital for a 5pm appointment. I’d had an MRI on my neck the previous year so already knew what to expect, but I didn’t think for two minutes they’d find anything sinister. I thought it was strange when I was also given a scan with contrast dye, as I hadn’t had that before. Then, instead of being sent home, I was asked to go straight to A&E, which is when I started thinking something could be wrong. Freddie and I waited there a couple of hours before being called in to see a doctor.
“I remember saying ‘maybe we’ll be able to go home after this’, to which she replied that I’d be going nowhere and would be staying in hospital overnight.”
She told me I had a mass in my brain which I automatically assumed meant I had cancer, and that turned out to be true. Freddie and I just looked at each other in disbelief. It took a while to process and I can’t remember a great deal more from that meeting, except that before it was over, ‘tumour’ had been said. I was admitted for several weeks because of concerns over seizures I’d been having, unknowingly. I was put on anti-seizure medication and given steroids to reduce the swelling in my brain. It turned out the pins and needles, and numbness, I had been experiencing were the result of focal seizures, which was a surprise. I was adamant though that I needed to be home by Christmas because my son’s birthday is four days after. He was turning 13 and I didn’t want to miss it.
“I was discharged in time to pick up a Christmas tree on the condition I would return if I had any more seizures.”
Despite initially being told my tumour was inoperable, in January I had a consultation – online because of the nurses strikes – with an oncologist from the John Radcliffe Hospital in Oxford who gave me the option of having a debulking surgery. He told me my tumour was ‘a nasty one’, likely grade 3 or 4, and I might have just four months to live without treatment, so would be lucky to see my birthday in March. If his daughter was in the same position as me, he said he’d advise her to have the surgery. I appreciated his honesty, which is all you want in that situation.
“There was no real decision to be made, months to live without surgery or the chance at a future with my children if I had it.”
After that, it was a case of waiting for surgery, which was scheduled for the following month. Waiting is the hardest thing, first for a diagnosis, then for surgery and now for each scan. I’d already been told it wouldn’t be possible to remove all of my tumour, because of where it’s located and the risk of permanent paralysis, but I was assured they’d try to take as much as they could without causing permanent damage. The operation took 10 hours and resulted in a 75% reduction of my tumour. It made me really tired and I now have impaired short-term, and sometimes long-term, memory, but otherwise I recovered well. I was kept in for five days and my mum visited each day, having rented a B&B nearby. I had a couple of focal seizures whilst in hospital but, thankfully, haven’t had any since.
Due to a biopsy taken during my surgery, my tumour was identified as a grade 3 astrocytoma. This made radiotherapy and chemotherapy inevitable. I finished six weeks of radiation at the Northampton General Hospital in May, but suffered fatigue and hair loss as a result. Between that and the 12 months of temozolomide (TMZ) chemo I’m now on, I took the decision to shave all my hair off. I think other people were more bothered by that than me, but I had such thick hair that having it fall out at the slightest thing was really annoying me.
“The TMZ is awful – it doesn’t matter when I take it, one hour before food or two hours after, both make me really sick, nauseous and tired.”
I’ve also lost my appetite, so have been referred to a nutritionist. Some days I just want to stay in bed and not move, but hopefully it’s doing its job. I had an MRI scan last month but the consultant I met to discuss results only had a basic report so I didn’t get any answers about whether my tumour was stable or my treatment working. I was told to speak to a Macmillan nurse at the Cancer Care Centre, in Milton Keynes, which is where I collect my TMZ tablets, who could liaise with Oxford. She told me my scan had shown nothing of concern. She recommended, when I go for my next one in November, I ask for a comparison to be made between that and my last two.
“Unfortunately, I have to go to Oxford for MRIs because I’m allergic to the contrast dye used and need to have the one they give children.”
It’s amazing how just sitting in the car travelling to and from appointments can tire you out, but I’m hoping it all pays off. In the meantime, I’ve signed up to do a sponsored firewalk for Brain Tumour Research. I’m a bit worried about my balance as it’s not always great these days, but I’m excited to be raising money to help fund research into this disease and am looking forward to it. I did the charity’s Jog 26 Miles in May Challenge earlier this year and raised more than £500, so I’m hoping to build on this.
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 historically just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
Together we will find a cure.