University lecturer Israr, from Southampton, was diagnosed with a petroclival meningioma in May 2022. The 52-year-old paid for a private scan after months of back pain and a loss of movement in her leg and was told that, without treatment, she had just nine months to live. She had a 16-hour operation to remove the mass which left her unable to walk and within weeks of rehab, Israr regained mobility in her legs. More than a year after surgery, she has been training for an epic walking challenge to raise money for research into the disease, so that no one else has to experience the devastation that brain tumours can cause.
Israr tells her story…
I had been struggling with back pain for a while which prompted me to pay for a private MRI which found my brain tumour.
I’d try all kinds of professional services including a chiropractor, a physiotherapist and osteopath. I was always an active person, I regularly went to the gym and participated in classes but had to give this up when my balance became off and my leg kept getting stuck in one position and took a while to regain full movement.
By November 2021, the experts were perplexed. As was the GP. No matter the work they did on my body or homework I did on their recommendation, I was still struggling. I started to feel dizzy if I bent forwards and I could only walk a short distance as my leg locked and I’d have to drag it along. It was embarrassing.
By the time Christmas arrived, I wasn’t feeling myself. My mum died two months earlier, and I was dealing with health concerns that didn’t seem to be improving.
This continued for months. In April 2022 I was alarmed by a change in the appearance of one side of my face. It seemed to droop and I felt as if I was drooling. I kept this to myself, not telling my husband my concerns and I wasn’t sure that change in my face was noticeable to other people.
That’s when I booked myself in for an MRI scan which I paid for. The doctors asked my symptoms and carried out tests as I was laying down as well as balancing. As I walked across the room for one part of the examination, he suggested I have a scan of my full spine and my head.
At this point, I still had no idea that there was anything going on in my head. I just wanted the pain in my back to go away.
Results came through a week later by an online video consultation. I could see the face of the specialist, he looked almost worried. He told me that there wasn’t a problem they could see in my spine, but I had a tumour on my brain.
In that moment everything felt surreal. I ignored the fact I had just been diagnosed with a brain tumour and instead asked what they could do about my back.
The tumour was a slow-growing petroclival meningioma, they could tell due to its size. The chances are that it had been growing for the last 15 years.
I expected to wait months for surgery due to a backlog of bookings. I was told before the operation, it’s likely I would lose mobility of my legs and would never regain movement due to nerve damage. They said without intervention I could survive nine months because the placement and size of the tumour was causing extreme pressure within my brain. This was in May and my operation was expected in November.
My husband was crying at this revelation as I remained stone-faced and in utter shock.
I started to write birthday cards for my two boys who were going to celebrate milestone birthdays that year. I recorded video messages for them beyond the grave and wrote birthday cards for years to come.
My husband and I took walks together where we would talk about how we would adapt the house and bring a bed downstairs for me to sleep in. We vented our frustration and anger at the situation. It was truly awful.
A month later, in June, I had a call from the surgeon who told me they had space available in two weeks’ time. We were due to go on our ‘last’ family holiday together to make memories which we cancelled. I had surgery at Southampton Hospital. Four surgeons worked as a team during the 16-hour operation. When I came out, I couldn’t walk, I couldn’t even move my legs. I was unable to swallow, one of my eyes was closed and I struggled to see clearly with my other eye. I was very confused and part of my skull was replaced with a titanium plate.
Before I went into the operation, I did a lot of reading to help me prepare my mental state and I read a lot about visualisation. I don’t know how or why but in my drowsy state I asked the nurse to move my legs. I wanted to know if I could feel them. As I couldn’t see anything, I said ‘okay you can do it now’ not realising she already moved them but I didn’t feel anything.
Everyday, they moved my legs for me, multiple times a day and after two weeks I felt a tiny sensation in my thigh.
I visualised getting out of bed, standing, and walking to the door and out of the ward.
Within days, my eyesight came back and within weeks I was living out my visualisation, I was walking, and was allowed to go home.
I deleted the videos I had made for the boys and burned the birthday cards I didn’t think I’d get to see them open. The future was much more hopeful.
My depth perception and general groggy days caused me to have a few falls and incidents at home. I paid for private treatments including oxygen therapy to help accelerate my recovery.
I live with permanent double vision in my left eye and my eyeball doesn’t move as the rotating nerves were severed during surgery. They can take two years to grow. I currently wear a patch of this eye and have had a special contact lens made to wear on occasions that I don’t want to wear the patch.
My leg no longer gets stuck and I’m currently working on retraining my muscle memory and working on improving stamina. I’m taking swimming lessons to help improve my neuro pathways, working on my physical being as best I can.
The goal is to be able to walk the Isle of Wight Ultra Challenge in May next year. A path known for its tricky terrain and scattered inclines, it’s not going to be an easy one.
I want to empower healthcare professionals with knowledge about brain tumours and to do this, we need to invest in research. Having gone through so much, I don’t want anyone else to go through this.
Israr Jan-Parker
November 2023
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 since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Israr’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure