In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Jade tells her story…
Being diagnosed with a brain tumour just nine months after giving birth was the beginning of a roller coaster journey I never imagined I would be on. My diagnosis with an anaplastic astrocytoma was not only a huge shock, but it robbed me of my identity: my hair; my work; my driving licence. And most importantly my independence.
“As a fit and healthy 32-year-old, this was the last thing I could have expected would happen to me.”
It was in August 2019 when I received the life-changing news, but the tumour was presenting itself three months before. My husband Tom works night shifts at Tesco and one evening, while he was working, I woke up with a strange sensation in my left side. It felt like my leg was in spasm and jolting. As I tried to get up, my leg gave way. I managed to check on Rowan, before falling back to sleep without too much worry.
A few weeks later, I experienced the same thing; I didn’t seem to have any control of my leg. I was at a café with Tom and wondered whether it was a trapped nerve. I arranged to visit my GP and when the appointment came around in August, I had a number of blood tests which proved inconclusive.
When I again suffered a loss of sensation in my leg, my mother-in-law convinced me to go to A&E at St Richard’s Hospital, Chichester. I was reluctant to go, not least because I was worried I’d bump into my work colleagues, but I wanted to know the cause of my symptoms and knew it was for the best.
“By now, especially having worked in the NHS for more than 12 years, lots of things were running through my mind, from multiple sclerosis (MS), to a vitamin deficiency. But never a brain tumour. Eventually, I convinced myself I’d had a stroke.”
I was referred to a stroke clinic at St Richard’s Hospital, but the assessments didn’t indicate I’d had a stroke. The consultant wondered whether it was all a symptom of anxiety, as I was soon due to go back to work from maternity leave. But she decided I should have CT and MRI scans just to be sure there wasn’t anything more sinister to blame.
“I couldn’t believe it when the scans showed ‘something’ in my brain. I was in tears, telling the hospital staff that I had a nine-month-old baby. I didn’t know what I was going to do.”
I was admitted to hospital and told I couldn’t drive. That was the hardest thing to hear, especially as Tom can’t drive and we’d just bought a larger car to help transport Rowan to activities and appointments. The consultants explained that focal seizures had caused my symptoms and I was prescribed anti-epileptic drugs, before returning home.
In September 2019, a month after my diagnosis, I had debulking surgery. The operation, an awake craniotomy, risked leaving me paralysed, but I was adamant I wanted to go ahead. I had to be awake during the procedure to ensure the surgeon wasn’t damaging healthy tissue.
“The operation was successful in removing 60% of my tumour but I was left with a loss of sensation in my left leg. I’ve been warned this could be irreversible. Tom took time off work to look after me and Rowan and I was prescribed steroids, which kept me up most of the night.”
I’ve just finished an intensive course of radiotherapy at the Queen Alexandra Hospital in Portsmouth, which was mentally and physically gruelling, and I’m still having chemotherapy. One of the worst parts was having the radiotherapy mask fitted; I felt as if I couldn’t breathe. Towards the end of my treatment, my hair was coming out in clumps. I’ve always had long hair, so to cut it short was a massive change.
Eventually, my hair was coming out to such an extent that I decided to shave it all off. I try not to get too worked up about it, as I know it’s quite a trivial thing, but I found it horrible to see myself at first.
I recently had a follow-up MRI scan which I desperately hope has shown positive results. It’s been very strange talking to my consultant over the phone, instead of in the appointment room, but this has to happen due to the coronavirus pandemic. I just hope the virus doesn’t delay my results, which are due at the start of April.
“I’m particularly anxious about coronavirus, because of my reduced immunity, so I try not to watch the news too much. Tom has been allowed time off work during the pandemic as I am vulnerable and we have a baby to look after.”
My life has changed dramatically since my diagnosis. I wasn’t able to return to work after maternity leave, I can’t drive and in many ways I feel trapped. I hate the fact I have to rely on my parents and Tom’s to give me lifts to appointments, though I know they are happy to help. I still have to take anti-epileptic medication and my treatment has made me very tired. My walking is still affected yet I was recently, to my surprise, denied a disabled blue badge.
Having a child is supposed to be one of the most joyful experiences in life but my brain tumour has caused a huge shadow over this precious time. I hope my scan results show I don’t need any further treatment for the time being, so I can make the most of every day with Tom and Rowan, and gain a bit more normality in my life.
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.
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