Sarah Strachan, a mum-of-two from Lowestoft, Suffolk, was diagnosed with a low-grade, inoperable meningioma in February 2018. She had struggled with her symptoms for 10 years prior and had, at times, felt suicidal because she did not know what was wrong. The 44-year-old is unable to work and is often bedbound because she suffers from bouts of temporary paralysis. She also suffers from seizures and is having frequent scans whilst her medication is being reassessed.
Sarah tells her story …
I fell off a 6ft wall in July 2006 and hit the back of my head. Afterwards, I complained of feeling dazed but this was attributed to having an impact injury and I felt I wasn’t taken seriously. In June 2007, I gave birth to my second son, Kyle, and, when I went back to work in 2008, a colleague told me she noticed a difference in me.
“I was tired all the time and put it down to having a newborn, but eventually I decided to go see a doctor and was diagnosed with an underactive thyroid.”
From 2010-2018 I was suffering with nausea, dizziness and headaches and I made countless trips to the doctor. In 2011, I was diagnosed with type 2 diabetes and when I began having memory problems in 2014, that’s what was blamed. I was sleeping a lot, struggling to get through work and forgetting to take my medication. It was a constant battle with the doctors but eventually I was referred to the mental health team and put on antidepressants.
I gave up work in 2015 because I just couldn’t cope anymore. The headaches were relentless. By January 2018, I had become so forgetful that I got lost driving familiar routes and forgot to pick my kids up. Kyle was nine at the time, and he’s autistic, but he was having to walk himself to and from school. At one point, I thought I’d lost a pouch of tobacco and I retraced by steps from Norwich Football Ground, where I’d dropped my son Kyle off, to JD Sports, home and back again. I later found it in my pocket, where it had been all day, and I knew then that things were getting worse.
“My doctor did a memory test on me, which quickly showed the severity of my problem.”
I couldn’t recall an address he had given me seconds before and I couldn’t tell him what had happened in the news, even if it concerned topics I usually knew everything about, such as new players signed to Manchester United. He decided to send me for a brain scan and when I got the results 10 days later, it was revealed I had 4.1cm by 1.9cm meningioma on the left-hand side of my brain. My case was then transferred from the James Paget University Hospital, in Norfolk, to Addenbrooke’s Hospital, in Cambridge, where I was told the position of my tumour and the fact it’s connected to my brain stem means it can’t be operated on.
“I became paralysed for a week after waking one morning in January 2022 unable to feel anything.”
It gradually wore off but some left-sided weakness remained. In March 2022, I was diagnosed with hemiplegic migraines, a rare type of migraine which mirrors a stroke by creating temporary weakness on one side of the body. Seeing a physio helped but I also bought a pool for my garden so I could exercise more. Unfortunately, on about the fifth time I used it, I had a seizure. I remember my head feeling funny and trying to get to the back of the pool, then waking up in my husband, Nigel’s arms. I’ve been on anti-seizure medication since, but it’s not helping.
“In September 2023 I was diagnosed with migralepsy, another rare condition in which I have epileptic seizures after migraines.”
Nigel had died of kidney cancer two months earlier and, having given his job as a lorry driver up in 2019 to be my full-time carer, this was a particularly difficult time. I now have carers visit me three times daily and my sons, who still live with me, do a lot. I was having annual monitoring scans, but since October, I’ve had them almost every week. No one seems to know what’s causing the change in my symptoms.
“Sometimes I get vacant seizures lasting up to two hours and I once had seven one after the other.”
I even have to wear a seizure alarm on my wrist. Having them is scary because I lose my vision and go in and out of consciousness. Sometimes I try to speak but no words or sounds come out. I try to recall who’s in front of me so that I can say their name when I feel myself coming out of it. That way they know I’m OK. Most of my carers hadn’t seen anyone have a seizure before me.
“People don’t realise what it’s like to live with a brain tumour and they can be judgemental of what they don’t understand.”
Even my family struggles with it. I have four brothers and I think they all find it difficult to accept I am how I am now. Before all this, I’d be out all the time, climbing mountains, exploring caves and walking through woods with the kids or on camping holidays and trips abroad. Now I can’t do much at all. I’m often bedbound and can’t do what I want to, although I still try to push myself. I know I’m not the mum I used to be. My boys do more for me than I do for them. They get me in and out of my wheelchair, help me to the toilet, clean the house and prepare our meals. I wish things could be different for us all.
“I want answers, it’s been six years since my brain tumour diagnosis and 16 years since my symptoms first started.”
I want someone to help me. I want to have some sort of life which doesn’t involve me being stuck inside my home every day. Nigel never gave up fighting for me and I’m not going to give up either. I feel I owe it to him. He and my nephew, Jordan Chilton, were planning to run a marathon together. Now Nigel’s gone, Jordan is preparing to run the Edinburgh Marathon on behalf of us both and in aid of Brain Tumour Research. I’m really proud of him. Anyone wanting to support him can go to: www.justgiving.com/page/jordan-chilton-1705254524672.
Sarah Strachan
January 2024
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 touched by Sarah’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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