Grace’s story: “The first chemo day was when it sunk in”

Grace, 21 was diagnosed with Hodgkin’s Lymphoma in January 2019 at 19 after finding a lump on the side of her neck in late 2018. Now in remission and doing well, Grace talks about what it was that got her through her toughest times.

She reflects on the word ‘unity’ and how this word got her through her treatment. Grace’s sisters, friends and family all rallied around her when she was unwell, both to help with treatment and also to help achieve her goal of raising over £14,000 for the charities that had helped her.

“It was around September/October time 2018. I thought I was at the peak of my fitness, I was going to the gym and getting up really early but my face was always quite puffy, I just felt really drained but all of the symptoms were justified by other things. I was having night sweats but that was justified by the hot weather. I noticed the symptoms all separately and didn’t see them as all pointing to one thing.

“I found a lump in my neck and at first, I would say ‘I’m growing a second head’ and my friends would  laughing with me, I didn’t take it seriously at all. Of course I was a little bit worried, but never once thought it could be anything majorly serious.

“When I went to the doctors I had blood tests and that’s when it got a bit more serious but again, I think my mind sort of shut down. I didn’t realise the severity of it until I was starting treatment. I think the doctors and nurses didn’t want to scare me so they never really said much.

“My mind just blocked it out and thought ‘we’ve just got to get through it and have the treatment and then I’ll be fine again’, I didn’t really know what was going on. I was never actually told, I never had that conversation [it’s cancer], I’d just been told it’s lymphoma, which is the actual name for it but, me having never heard of lymphoma until that day, I just thought that was just a chest infection or something. It was never actually said ‘you’ve got cancer’. I do remember being told I had lymphoma and that they were going to do the biopsy but it wasn’t until my sister asked what sort of treatment I would need and the doctor said ‘Chemotherapy’ that I started taking it a lot more seriously.

“The first chemo day was when it sunk in, I could see other people in the ward and that’s when it really felt real. I had no idea it could be something more serious, I didn’t know all of the information that I know today – that all of the symptoms I was having could lead to what it was. Back then I was naïve in a way I didn’t know it could happen – I think that’s the same with everyone you think it’s never going to happen to you. I turned 19 in the December and I was diagnosed in January. And that’s part of the reason why I was vocal about  my experience and wanted to document the process because I bet a lot of people are like me and don’t even know lymphoma is cancer.”

Throughout treatment, Grace decided to help raise money for some of the charities who had helped her throughout her experience. As well as a way to help the charities, she said it also gave her something to focus on.

“Me and my sisters arranged lots of fundraising events and managed to raise £14,330 in the end. This money was split between CLIC Sargent, lymphoma action, Giddo’s Gift and funding to help Sam a complimentary therapist on the shooting  star ward. A large amount of the money raised went towards donating 100 of the treatment bags to the shooting star ward. A portion of the money was also used to get a new laptop for the nurses on the shooting star ward. Between January and June that’s when we raised the £10,000 and then there was a few extra things up to about October time and then the grand total was about £14,000.

“We did a fancy dress walk up Moel Famau  and I’m part of a cheerleading group, I’m one of the coaches, and they all did a fancy dress session and contributed and we did a ladies’ night, that was specifically for CLIC Sargent. My Dad and Step Mum completed the London to Brighton bike ride, my brother-in-law, a group of his colleagues and my sister did a sky drive. My high school Ysgol Maes Garmon held a cake sale and we held a coffee morning

“It was my sister who said ‘let’s turn this into some sort of positive and help the people after you, going through similar things to see if we can help them in any way’. She said I’ll have first-hand experience of what I needed more of or what I thought would be beneficial to people.

“I’ve got three older sisters, they were always around and we’re really close. They’re 31, 29and 26.”

CLIC Sargent was among the charities that Grace and her family helped to raise money for. Throughout her experience Grace was supported by a CLIC Sargent social worker, Rachel.

“I was put in contact with Rachel quite early on, about my third chemo in and before then I’d only had booklets and things from my doctor. The support of Rachel was so good and I just really appreciated her time and care, every other week when I wasn’t having treatment I’d go and meet Rachel and we would talk about all sorts of things. I wasn’t under pressure to say how I was feeling but felt I could if I wanted to. We spoke about how treatment was going and looking to the future and what my plan was going to be for the months that followed treatment

“She helped me with PIP and she suggested the Willow Charity and different ones like that. We were lucky enough to be able to go down to Tenby for a caravan holiday for the weekend with my sister and my Mum. She let me know about all different things that were going on and the support groups I had access too. She spoke to my Mum quite a bit that was helpful.”

Grace is now in remission and back to working full-time. She is sharing her story this World Cancer Day to help other young people with cancer get through the tough times.