In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
When mum-of-two Sarah Cardwell started having problems with her sight in summer 2018, she never dreamt the symptoms were caused by a brain tumour sitting on her optic nerve. Sarah was diagnosed with a craniopharyngioma in December 2018 and had surgery to remove the tumour within days of her diagnosis. Unfortunately, the tumour returned in July 2019 and she has been left dealing with considerable after-effects from further brain surgery.
Here is Sarah’s story…
I work as a communications officer at Leeds Beckett University and it was when I was at work, in summer 2018, that I first noticed something wasn’t quite right with my eyes. My vision was blurred and I thought I probably needed new prescription glasses. I only wore glasses for driving at the time. I kept telling myself to make an optician’s appointment but with a busy job and two young daughters, life got in the way and I kept putting it off. I finally made an appointment at Specsavers in Guiseley for 16 November 2018. I’ll never forget that day. It was a Friday morning. The optometrist did a series of tests and then tried to see if my sight was improved with various different strengths of corrective lenses. With each different lens she tried, there was no change. She was really good, staying calm as she told me that she was referring me to the eye casualty at St James’s University Hospital.
“I asked why I was being referred so urgently but she wasn’t able to give much detail, other than that I was to go that same day.”
I phoned my husband Tony, who works shifts, and luckily was at home. We had a couple of hours to kill before my appointment in the ophthalmology department at the hospital, as they were closed for lunch when we got there. We went to get some lunch in the city centre and I remember sitting looking at the pretty Christmas decorations in the centre. There was a strange juxtaposition between the lovely festive lights and the terror I was feeling about what might be wrong with me. When we got to the hospital, the first thing the ophthalmologist did was to take a photo of the back of my eye. He then did a colour-blindness test and I didn’t get a single one right. He was then asking lots of questions about whether I got tired easily and whether I had noticed any other unusual symptoms. When I thought about it, I had been prescribed iron tablets for anaemia and had also suffered some sickness and dizziness. I had also been to the doctors with severe headaches but I thought they were probably due to being tired and over-stretched with a busy work and home life. It had also been suggested that my symptoms were hormone-related, possibly caused by being on the contraceptive pill.
“I was referred for an MRI scan, at which point the alarm bells were ringing and I told my husband that I thought I had a brain tumour. He told me not to be silly.”
My MRI scan appointment was on 8 December. In the meantime, I started googling things. I decided it was either a brain tumour or multiple sclerosis (MS). I was worried and really beginning to panic. I tried to carry on as normal but I was a wreck.
The MRI was on a Saturday at Leeds General Infirmary (LGI). I could tell the radiographer had found something but I was told I would get the results from the scan the following Thursday. I had a busy weekend with children’s birthday parties and on the Monday, I went to work as normal. On Wednesday, the day before I was expecting to get my results, I was at work with my phone switched to ‘do not disturb’. When I checked my phone, I saw I had a text message and two missed calls from a doctor at LGI. The message sounded a bit urgent, so I went into a private meeting room to call him back. The doctor introduced himself and said he worked under the neurosurgeon, Mr Nick Phillips. He then went on to say that the call was about the ‘cyst’ on my brain and that I was to go back in the next day for another MRI. Having the news broken to me in this blasé fashion was a huge shock and was deeply distressing. There had been a mistake and the doctor I was speaking to assumed I had already been given this piece of information.
“I tried to ring Tony but he was at work and his phone was switched off, so I called one of my really close friends instead and blurted everything out to her. I was beside myself with worry.”
I went to tell my boss; she gave me a hug and asked if I wanted to go home. I decided to stay at my desk and carry on working. Although I was completely shocked and bewildered, the last thing I wanted to do was to go home to an empty house. Tony eventually called back while I was driving home. He was in the car with the girls on loud speaker, so rather than tell him directly, I decided to spell out the word ‘cyst’ to him. He said he thought that didn’t sound so bad, as it wasn’t a tumour. The next day the two of us were back at the LGI for the second MRI and after the scan, we were sent home with very little information.
The following Monday I had my first appointment with Mr Phillips, the neurosurgeon. He showed me the scan images, which revealed the ‘cyst’ was in fact a brain tumour sitting on my optic nerve. He believed it was a craniopharyngioma, which he said he would like to operate on as soon as possible. I was expecting that surgery to take place in the New Year so imagine my utter shock when he said he would prefer to go ahead the following morning, if at all possible. The urgency of it all was alarming. I was sent off with a specialist nurse for my pre-op assessments. I was given some leaflets about the surgery I would be having and we headed home at around 3pm. I was to be back in for 7.30am the next day. Before then, I had the unenviable task of calling my parents, not only to tell them that I had been diagnosed with a brain tumour but also that I would be having major surgery the next day. Up until that point I hadn’t mentioned anything because I didn’t want them to worry. I spoke to my mum and asked her to try not to get upset, as I was doing my best to hold it together for the children. I asked for their help with childcare over the next few days. Of course, with it being the week before the girls broke up for the Christmas holidays, it was busier than ever with various nativity plays, concerts and end-of-term parties to organise.
“I had to tell the girls I was going into hospital but I said it was to fix a ‘problem with my eye’. We decided that Dr Brown Bear (from Peppa Pig) was going to be looking after me and making me better.”
I put the kids to bed that night. I said Mummy wouldn’t be there in the morning but that they would see me again a day or two later. Luckily, they weren’t fazed at all. I, on the other hand, broke down when I left the room. The thought of possibly not seeing them again was just too much. I didn’t want to go to bed that night and I think I only managed about one hour’s sleep in the end. Tony had set the heating to come on early, which unfortunately woke the kids up, so I had to say goodbye to them all over again. It was really tough.
When we got to the hospital, I was told I was second on the waiting list. The waiting room was dark and depressing and full of people much older than me. The reality really set in when I had to sign the form setting out all the risks. The location of my tumour meant that I was operated on by an ear, nose and throat (ENT) surgeon Mr Paul Nix, as well as Mr Phillips. The operation was five hours and they went in through the sinus, meaning it was less invasive than conventional brain surgery.
I had been warned that my vision was likely to seem worse than before when I woke up. I remember, however, opening my eyes and looking at the clock, which appeared clear. The realisation that I had survived my surgery was a huge relief. Tony brought the girls in to see me but we decided one visit would be enough, as the neuro ward is not a very pleasant environment for children. Still, I managed to reassure them I was fine. There were other friends and family members who had no idea what I had been through, as everything had happened so quickly. It was strange having to contact them to deliver such big news.
I stayed in hospital for five nights in total. On 22 December, I was able to go home in time for Christmas. Tony picked me up and drove me home. As we drove through the streets of Leeds, everything was so bright and colourful with the Christmas lights twinkling. I will never forget how vivid it appeared compared to my vision pre-surgery. Once we were home, I spent most of the Christmas holidays in bed. I did manage to make it downstairs to have lunch but most of my time was spent recovering. I was told I would need six weeks off work. That turned out to be a huge underestimation. I was steroid-dependant, extremely fatigued and I had developed diabetes insipidus, caused by problems with a hormone called vasopressin (AVP).
The results of my first post-op MRI scan were in February and showed that things were stable. The surgeons had managed to remove most of the tumour and the results looked good. They said my next routine MRI scan would be in December. However, in June, fate stepped in and I woke up one weekend with a tingling sensation in my eye. It felt all too familiar. Deep down I knew the tumour was back but I didn’t want to believe it. I said to my husband it didn’t feel right. When the symptoms were still there a couple of days later, I rang the hospital. Coincidentally, I’d had a routine MRI the week before, so they had a recent scan to look at. On Wednesday afternoon the phone rang and it was someone called Simon from LGI. He said he was calling to confirm the date of my operation.
“He was devastated to learn that this was the first I knew of my tumour recurrence. Without realising, he had just broken this extremely difficult piece of news to me over the phone.”
A week and a half later, I was back in theatre. It was a real kick in the teeth, having just been given my return to work date for September. I was really looking forward to going back but it wasn’t to be. I was so anxious about going through surgery all over again that I was prescribed propranolol from the GP to manage my anxiety and panic attacks. Just as before, I tried to stay busy in the run-up to my operation; it was nearing the end of the summer term and so the kids had a lot going on at school and family life was as hectic as ever.
My second brain surgery was on 23 July 2019. We sent the girls off to my mum and dad’s and the night before the operation, Tony and I went out for dinner, to try to relax. I managed to sleep this time and I was a bit calmer because I knew what to expect but I also knew the recovery was tough. When we arrived at hospital early in the morning, I was first on the list. The theatre team were amazing and managed to put me at ease. The operation seemed to go well and once again I stayed in hospital for five nights. This time, however, after being discharged from hospital, I suffered a cerebrospinal fluid (CSF) leak. I knew something was wrong when I woke up at 5am, swallowed and felt a gush of liquid down the back of my throat. The next day I was supposed to be going over to my parents’ house with the kids but I stayed at home and the girls went on their own, worried I might have to go into hospital. The following day I felt a bit better, so I went to join them but late that night my nose started dripping. I rang the hospital and they advised me to go in via A&E. I called Tony and he came to get me and my mum came with us as well. We got through the triage system quickly and ten minutes later I was admitted to the neuro ward. Sadly, there were no beds available, so I had to sit in the dayroom until 7am. I was so tired, had a searing pain in my head and just felt dreadful. I felt really sick and weird and was getting upset. They sent me for a CT scan, which revealed I had air on the brain. I stayed in overnight but was discharged the next day and went back to my mum and dads.
“I didn’t feel well enough to be back home and the next morning I sat up in bed, the searing pain still there and I felt really unsteady. I could actually feel air moving in my brain.”
I rang Tony and he met me back at the hospital. This time I was begging them for pain killers. I was eventually given a bed and put on intravenous (IV) antibiotics. The next morning, when the doctors were doing their rounds, one of them happened to mention to his colleague that I was being treated for meningitis. This was a huge shock and again, the first I had heard of my diagnosis. Later that day, I was operated on to fix the leak but just hours after the surgery I became really violently ill and was vomiting profusely. I asked for fluids and pain killers but the pain and my symptoms just couldn’t be managed. It turned out that they had accidentally taken me off the antibiotics. I couldn’t believe it. Once back on the drip, I started to feel better but I suffered another nose leak, which was most likely caused by the vomiting. I was so upset and had had enough by now. The surgeon decided he would need to operate again, this time taking a skin graft from my thigh. I waited all day for the surgery to happen, nil by mouth, until eventually the surgery was postponed until the next day. The following day the same thing happened; I waited until 9.30pm at night, completely drained. When they finally told me it was time, I said no but the ward nurse managed to persuade me they should go ahead. When I got to the anaesthetic room Mr Nix came to see me, he held my hand and said, ‘you’re a dab hand at this now’.
“I went home three days later, having been through three brain surgeries in three weeks. This time the recovery was longer and harder.”
I continued having MRI scans six-monthly and then annually and thankfully they have all been stable. As I reflect on my experiences now that I am through the worst, I am amazed at how strong you can be when you need to be. My husband has been a great support but he doesn’t like to talk about it too much whereas I find it helps to talk. My family and friends have been amazing, and my parents, in particular, have been wonderful, stepping up to help with kids several times and providing me with much-needed support.
This year I decided I wanted to do something to help others with worse outcomes than me. That’s why I signed up with my family to take part in Brain Tumour Research’s Walk of Hope on 26 September 2020. I didn’t want to pressurise myself with a huge challenge or to set any targets, so we opted for a peaceful walk around Valley Gardens in Harrogate. We had a lovely walk around the gardens and managed to see parts of it we’d never seen before, as we did quite a few laps! We raised nearly £700 for the charity, which was absolutely brilliant. I am still on daily medication – a constant reminder of what I have been through. It hangs over me. I am under regular review and have been left with fatigue but I count my blessings that my tumours were treatable. It’s good to be able to give something back to a charity carrying out vital research to help improve treatment options and ultimately, find a cure for this awful disease.
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.
If you have been inspired by Sarah’s story, you may like to make a donation via or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure.