Rosie’s story: ‘we were totally on our own when we found out it was growing again’

Rosie, 18, was diagnosed with a brain tumour when she was 11 years old. Since then, she has had various rounds of treatment such as chemotherapy, radiotherapy and has been on clinical trials. During lockdown, while everyone stayed at home, Rosie was given the news that her tumour had begin to grow again.

“Our family live 75 miles away so we couldn’t see them, they couldn’t see us so we were totally on our own when we found out it was growing again.”

Rosie and her Mum, Claire, are sharing their story to highlight what the last few months have been like for young cancer patients and their families.

“I’d get really bad headaches and I’d be sick and I’d literally have to sleep the whole day. I didn’t notice anything at first but my mum used to say ‘why are you looking over there?’ when I was looking at her, my eyes starting going funny and then I’d be saying stuff and my mum would say ‘what do you mean, you’re not making any sense’ and I wouldn’t even remember what I had just said.

“It was 2013 when I was 11. I was at a wedding anniversary and it was more that I got taken there. We went to the doctors before and they kept telling me it was migraines or hormones because I was 11. Every time they told me it was migraines. They finally referred me to the consultant but I got rushed in in the end.

“That morning I felt fine but just before we left I felt really sick and it was weird because I was at my dad’s house that weekend and my mum said to him ‘Rosie is going to be ill this weekend’ because it got to the point where my mum could plan when I was going to be ill. I was being sick and I was really tired, and I kept fainting so my dad took me to the A&E, when he took me in I couldn’t use my legs, he was dragging me along the floor. So they brought me a wheelchair because I couldn’t use my legs at all. Then they gave me a scan and they told my Mum and my dad that I had a brain tumour but I didn’t know.

Mum, Claire remembers the moment: “when her Dad took her to Frimley and I was driving up, I rung my friend and I said ‘I think she’s got a brain tumour’ but that’s the first time I ever really thought of it because you don’t think things like that will happen to you, do you?”

“I thought, ‘why can’t it be someone else?’ They just told me I had a lump in my head. Being eleven I didn’t know what the word was so I thought it’s alright they’ll take it out and I’ll be fine. I think I was upset. I went from hanging out with my friends every day to being stuck in hospital all of a sudden I had to have this major surgery. They think I had it for about nine months but my symptoms weren’t for nine months.

“I came around from my operation and I said ‘how am I going to go to school?’ I said I need to make sure I get seats next to all of my friends and my Mum was going ‘I don’t think you’re going to school love’ and I said ‘yes I am’

“I’ve always loved school so I thought I need to get to school! I basically missed all of year 7, I had home tutors for some of that time. I did a few days in year 7 but it was more I just went in for a couple of hours and then came home again and that was probably less than a week that I did that and then I had home tutors.”

Rosie went on to have intensive chemotherapy and radiotherapy, which lasted ten months. Due to her tumour, Rosie was later registered as blind, which was very tough.

“People always say to me ‘you’ve been through so much treatment’ but the thing that I’ve found hardest at the time when I was 11 was my eyesight because I was out with my friends all the time then all of a sudden I couldn’t. re-learning how to make cups of tea safely.

“It was quite hard because I was 11/12 but I was on the kids ward but I was the oldest person on there. All of the little kids were screaming and shouting in the playroom. I was about to go to secondary school and there were lots of six year olds and babies and I just wanted someone my age.”

Rosie was supported by a CLIC Sargent social worker who encouraged her to join social events like dinners out to meet other young people with cancer her own age.

Rosie finished treatment and went back to school. However, just before Rosie was due to take her GCSEs, she started to get symptoms and was rushed to hospital once more.

“I only noticed something was wrong because I went to a school with a visual impairment centre and they taught me touch typing and I noticed I couldn’t press any buttons with my pinky finger and the one next to it on my left hand, which was a bit weird. My mum noticed that with my balance I was a bit all over the place, I nearly fell down the stairs and then Mum rung the hospital.”

Claire recalls getting in touch with the hospital: “I kept ringing the hospital and saying something’s wrong but they said no it’s fine because she’d had a brain scan that was clear but it got to the point she was like bambi and she couldn’t walk and had to go down the stairs on her bum. In the end I spoke to the nurse and I said I think she’s got a spinal tumour and she said ‘oh I don’t think it is’ but we rushed her in as an inpatient and they did a scan and they said she has a tumour on her spinal cord.”

“This was about eight days before I was meant to take my GCSEs as well – I managed to get one between year 6 and year 7 and one when I was going between school to college. I got offered the chance to take them while I was in hospital which I was going to do but after my surgery I thought there’s no way I’m going to be able to. They used my predicted grades and my mock results and gave me honorary grades. I was quite annoyed because I was not looking forward to doing them but I probably could have done better if I’d have done them.”

Rosie went on to have surgery and more chemotherapy but they had to stop the treatment as her bloods weren’t recovering, so she went on a drugs trial at the Royal Marsden. However, her kidneys were failing so she had to stop this treatment as well but it did manage to make the tumour shrink and it had been stable since then.

However, in May this year – as the country was in lockdown – Rosie and Claire found out the news that Rosie’s tumour had started to grow once more.

“I got offered a scan, I thought I’ll take it and I had this feeling it had started growing back and then obviously the scan said it did.”

Claire recalls: “because of covid we’ve had to speak to her consultants on the phone. She’s had radiotherapy, she had 15 goes of that but they were saying I couldn’t go with her. I said I have to go with her she’s blind, she doesn’t know where she’s going so they did let me in with her in the end for it. There’s no drugs trials at the moment, they’re not starting any chemo. Because of covid as well we have been quite isolated.

“She hasn’t been able to hang out with her friends or have family round. We found out and it was really strict lockdown and normally we would go away for a weekend but obviously we couldn’t. Our family live 75 miles away so we couldn’t see them, they couldn’t see us so we were totally on our own when we found out it was growing again.

“At the moment, because she’s had radiotherapy we’re having to wait a couple of months for an MRI because they won’t know if it’s swelling from the radio or her tumours so we’re kind of in limbo at the moment.

“You just want a hug and you can’t have one. It has been very isolating this time, even worse, because usually if you get bad news then people do turn up at your house and we haven’t had that, we haven’t had someone round for a cup of tea. We have started introducing it in the garden.”

Rosie speaks about shielding: “One of my friends has been messaging saying I really want to meet you so I’m excited about that but then I am worried that people aren’t going to follow rules. I was severely vulnerable so it’s me who has to stay in the house for months, I’ve literally only been in the garden.”

Now, Rosie and Claire are waiting for Rosie’s scan results to see if the radiotherapy has helped. Rosie is hoping that drug trials will be back soon so she can go on one of them if needed.