Helen Hannam

5 min read

Chartered surveyor Helen Hannam was diagnosed with an ocular migraine, low blood pressure and depression before finally being diagnosed with a brain tumour, later identified as a grade 3 astrocytoma, in December 2015. The 36-year-old, who lives in Towcester, Northamptonshire, but used to live in London, underwent a craniotomy followed by 33 sessions of radiotherapy and five cycles of PCV chemotherapy, and was treated for a bleed on the brain last year. She is being monitored every four months and is currently awaiting the results of her latest scan.

Helen tells her story …

I was living in London with my husband, Mark, whom I’d married six months earlier, when I was diagnosed with a brain tumour on 22 December 2015. I’d just been promoted in a job I loved to assistant director of global property company Jones Lang LaSalle (JLL), Mark and I had decided to start trying for a baby after returning from an amazing honeymoon in Thailand and we had just bought our first property.

“Everything seemed to be going great until I started getting headaches and tunnel vision.”

I went to an optician straight away and was told I had ocular migraine and it was nothing to worry about. I had thought I was losing my vision, so to be told my problem was temporary and would resolve itself was a huge relief. However, the paracetamol I was taking for my headaches, and for a pain I had developed in my neck and shoulders, wasn’t helping and meant I was struggling to work.

“Eventually, I went to the GP who, on discovering I had low blood pressure, told me that was the likely cause of my headaches.”

By the time Mark and I moved into our new house, I was being sick in the mornings. My colleagues assumed I was pregnant but I had taken tests and knew I wasn’t. I struggled to get an appointment after registering at a new doctors’ surgery and will never forget my mum, Lynn, telling me I could have a brain tumour as I made my way in.

“This time the GP diagnosed me with depression, which I knew I didn’t have, and prescribed me anti-depressants, which I never collected.”

 

It was about a week later, as I was walking home from work, that I experienced a weird sensation. It was as if something evil had punched me in my chest. I also became paranoid someone was watching and following me. When I told Mark about it, he asked if I’d been drinking alcohol, which I hadn’t. We ate dinner together and I went to bed around 10pm, which is early for me. I was up again half an hour later, being sick. Mark was holding my hair back and so was with me as I rinsed my mouth in the sink.

“All of a sudden, my eyes rolled to the back of my head and I had my first seizure.”

Mark dialled 999 and an ambulance arrived eight minutes later to take me to University Hospital Lewisham, where I had two further seizures. Both our parents came to meet us so were there when we were told I had a mass in my brain. It sounds silly to say but, after all the misdiagnoses, I felt relief at finally knowing what was wrong with me. I asked if I had brain cancer and was told that’s how it looked from my CT scan.

“The doctor said my tumour was so large that, if it wasn’t for my seizures alerting us to it, I would be dead in four to six weeks.”

I was kept in hospital over Christmas 2015 and put on strong steroids to reduce the swelling in my brain, which made me put on a lot of weight. I was discharged in time for New Year’s because I only lived 10 minutes from the hospital. I was so hungry all the time that the only way anyone could make me happy was to take me for food.

“They also had to share their meals with me or risk being stabbed in the hand with a fork.”

I had an 11-and-a-half-hour craniotomy at King’s College Hospital on 6 January 2016. I was given a drink beforehand that contained 5-ALA, a substance that accumulates in fast-growing cancer cells and makes brain tumours glow pink under UV light. This enabled my surgeon to remove more of my tumour by helping him distinguish between cancer cells and healthy brain tissue. It did, however, mean I had to be kept in the dark after because the chemical can make your eyes and skin sensitive to bright light, which didn’t please some of the other patients in the high dependency unit.

“After I recovered, having been diagnosed with a grade 3 astrocytoma, I underwent fertility treatment, freezing a total of 18 embryos.”

This was in preparation for having 33 sessions of radiotherapy, which took place at St Thomas’ Hospital, and five cycles of procarbazine, lomustine and vincristine (PCV) chemotherapy at Guy’s Cancer Centre. I did lose parts of my hair so it’s not as long as it used to be, but I’ve got a great hairdresser who fixed me up with hair pieces when I needed them. Mark and I have since decided against having children. We both feel it would be unfair to bring a child into the world knowing how uncertain my future is. I’ve still got cancer, I’ve still got a hole in my head and I still have seizures. It’s been an incredibly difficult decision, though.

“I wasted a lot of money on homeopathic smoothies before my oncology consultant recommended a micro-nutritionist who used to work at King’s.”

She’s advised me against having food and drinks containing the sweetener aspartame and I now also take powders like the spice turmeric on a daily basis. As well as understanding the reasons for including or excluding things from my diet, I now pay less than £20 a month instead of the hundreds of pounds I was paying previously.

“I had a bleed on my brain last year, which was pretty serious.”

I couldn’t recognise anyone and even had the last rights read to me at one point. I’d had a fall whilst home alone in April and Mum took me to Northampton General Hospital because I wasn’t talking sense. The staff there said I was concussed but would be fine in a week. I did get better but in July I had another episode and wasn’t making any sense. Mum took me back to the hospital and sat with me in A&E for four days because there wasn’t a bed.

Once I was admitted, I was given an MRI scan, which is when the bleed on my brain was discovered. I was going downhill so fast that, just two days later, my parents thought I was dying in front of their eyes. I couldn’t walk or talk and was losing feeling in my limbs. I was read the last rights at around 9.30am the next day and was blue-lighted to the John Radcliffe Hospital, in Oxford, shortly after. The staff there said I was in a much worse state than Northampton had led them to believe.

“They couldn’t believe I hadn’t been scanned after my fall in April, especially seeing as I was on drugs that put me at a greater risk of bleeding.”

I was taken for an emergency operation to address the bleed and had two seizures whilst recovering, one lasting 10 minutes. I became completely incapacitated as a result. I was kept in John Radcliffe for another 24 hours before being transferred back to Northampton.

“Unfortunately, despite being unable to talk, write, or walk, I didn’t have any physical or speech therapy in hospital, so it has been a long road to recovery.”

When I was diagnosed, I was told the hope, with treatment, was to give me ‘substantial’ years. Substantial will mean different things to different people but I know It’s been almost eight years since my diagnosis and that I’m still alive, for which I am very grateful. It’s my faith and my family that have got me through it. I was advised to keep my stress levels to a minimum, the less the better. As well as moving back to Northamptonshire, this means I’ve not been able to work, although I wish I could. Instead, I’ve taken up drawing and belong to an art group, which I started as part of my recovery. I also do daily brain training exercises on the Lumosity app.

“I refuse to be beaten by my brain tumour; I don’t want to die, I’m only 36.”

Helen Hannam

September 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 Helen’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

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