Hannah Roberts

Here is Hannah’s story, as told by her mum, Gail…  

Hannah has always been an incredibly cool, funny, kid. She’s a bit different and thinks outside the norm. She’s a petrol-head and likes things that usually lads like: car shows, sports, bars, pool. Hannah was living a normal 19-year-old’s life and was on an apprenticeship with JCB as a welder when things started to go wrong. 

It all started on Christmas Day 2021, when Hannah suddenly became very sick. She’d been complaining of nausea for a while, and we’d taken her for an eye test because she’d said everything was blurry. But on Christmas night she ended up in Royal Derby Hospital A&E. They thought Hannah had appendicitis, because she was being so prolifically sick, so she had an operation to remove it.  

“Afterwards the doctors realised her appendix was actually fine - so she didn’t need it out at all.” 

They sent her home and for six weeks she barely left her bedroom because she was still so sick, despite the anti-sickness medication. I was worried, so I called the hospital, but they said it was quite normal after surgery. We kept going back to the doctors, because Hannah was having nosebleeds and headaches too. But they constantly put it down to migraines and hormones. They gave her contraceptive pills, and said that would settle things down, but it didn’t. We went back to the doctors again and said it’s not working, so they tried Hannah on a different contraceptive, and brushed over it as her hormones being all over the place. 

Then on 16th July 2022 Hannah was taken by ambulance to Royal Derby Hospital with a really severe headache. She couldn’t see out of her left eye, was having weird sensations on the left side of her body and was being constantly sick. Again, she was told it was a migraine, but in the end, Hannah demanded a CT scan.  

“Hannah absolutely dug her heels in, at this point she knew something else was wrong and she wasn’t leaving without a scan.” 

Very soon after the scan, they came back and told Hannah she had a brain tumour. It was very large, and had a huge cyst attached. It had also parted the two sides of her brain.  

They kept Hannah in hospital for three weeks. She was still being constantly sick and couldn’t keep any food down. They were insistent it was a reaction to the morphine, but we knew it wasn’t because this had been going on for weeks. We were getting increasingly concerned about the care she was receiving. The doctors believed it was an oligodendroglioma and said Queen's Medical Centre (QMC) in Nottingham would see her as an outpatient and Derby should make her well enough to leave for home.  

However, Hannah was in a short stay rehabilitation ward with no expertise in brain tumours.  I spoke to one of the doctors and said: “My daughter hasn’t seen a single person who specialises in brain tumours. She’s not even on a neuro ward, she’s been left in a corner of a short-stay ward surrounded by old people waiting to be discharged. She’s not getting any treatment, why is she still here? I want her over to QMC Nottingham today. If you don’t, I’ll put her in the car and take her to A&E there myself.” 

It worked; she got sent to QMC and was seen straight away. They had never seen such profuse sickness, so they fitted a gastro tube into Hannah’s tummy to get her fit and well for her biopsy. Then she went for a more in-depth scan, but when the surgeon came back he said it looked more serious than expected. 

“The ‘watch and wait’ approach and biopsy all went out the window - the surgeon said they needed to operate the next day.” 

She came round after surgery to debulk the tumour and said “Mum I could kill a yogurt”. I just thought, well this is coming straight back up, but she ate it. Then she just kept eating and eating, and we hadn’t seen her eat for so long. The tumour had been pushing on the swallowing part of the brain, and that’s why it was stopping her eating. I felt so sad that I’d let this go on and that I had believed in the doctors for so long, but they really didn’t have a clue what they were doing with her. 

The next day the surgeon came to see us and we were hoping to hear it was an oligodendroglioma, but he said they weren’t sure what it was and they needed to send it off for testing. Hannah started having pseudo seizures, just a minute or two, which doctors said was normal and all part of the brain settling down after surgery. She was sent home and we carried on with life, waiting for the results. 

Then Hannah started being violently sick again, I called 999 but unfortunately, we had no choice on the hospital she was taken to and she ended up back at Derby. We were there for three weeks, and Hannah got worse and worse.  

They put her on a huge dose of steroids, and she just grew. Her weight almost doubled from 68kg to about 120kg. She couldn’t walk she was so big, and her skin was so tight and stretched it was hard to the touch. She has inch-wide stretch marks over her whole body now. 

They put her on midazolam for the seizures, but she reacted to that and started having huge seizures. Sometimes they would last an hour. At one point she was seizing up to 19 hours a day. I said it was the medication bringing this on, but nobody at the hospital would listen. At one point they said the seizures were psychological, so I said “bring a psychologist down then”, but they didn’t have one. One of the hardest parts of it, was seeing her in so much pain. The seizures were so violent she said it felt like she’d run a marathon afterwards.  

“Then, one day, Hannah was alone in a room seizing, and she was vomiting at the same time, I walked in and she was choking on her own vomit.” 

I couldn’t stand by any longer, so we put her in a wheelchair - while she was still seizing - and drove her to QMC. Amazingly they had Hannah home in two days. They listened to me and stopped midazolam and the seizures stopped. It was that simple. 

While Hannah was in Nottingham, we received the results of the tumour. The surgeon told us it was epithelioid glioblastoma (GBM), a very aggressive tumour. Hannah would have radiotherapy and chemotherapy, but they could not cure her. We were told to take her home, make memories, remember how she smells, and take lots of videos, because we were going to lose her. It made me sick. We were all hysterical at that point. I just kept saying, “how do I tell her?” How do you tell your daughter that?  

“I didn’t know what to say to Hannah, it was the hardest thing I’ve ever had to do.” 

Hannah is sterling, she’s solid and brave. She says to me, “don’t worry Mum” or “it is what it is”, she’s amazing, not even any tears. I just wish I could swap places with her.  

Hannah had radiotherapy for six weeks, 30 rounds, and has just completed her fifth round of temozolomide. 

I’ve been down so many rabbit holes looking for a cure, and then I came across the DCVax®-L, an immunotherapy treatment developed for glioblastoma, which is only available privately. I spoke to some experts who said they are looking to get it approved on the NHS within two years, so I thought: “Right, we need to raise the money to start this treatment”. 

Hannah is the comedian in the family, she’s crazy and fun. She is ‘my happy’, she’s hilarious and we laugh all the time. She has so many friends and is popular with everyone.  

“I can’t lose her, I need to try everything.” 

I’m a realist and I know what we’re up against, I’m not living in cloud cuckoo land, but I’m also not giving up easily. Treatments for brain tumours haven’t improved in decades, and something’s got to change. I’m supporting the petition from Brain Tumour Research, calling for ring-fenced funding, because the Government needs to invest more money into research. It needs to support trials into alternative treatments so we can get them in this country, on the NHS, and not have to go abroad.

“There’s nothing you love more in the world than your child, and absolutely nothing worse than the prospect of losing them.”