Lauren’s story: “I was just sitting there thinking ‘what’s happening?'”
“I had my mum one side of me crying and my fiancé was the other side of me in tears and I was just sitting there thinking ‘what’s happening?’”
Lauren had been going back and forth to the doctors and dentist for months, before that moment. She was living in Glasgow with her fiancé with her Mum and Dad back home in Northern Ireland getting more and more worried with every text and call they got.
“I’m coming over.” Perhaps it was Mother’s instinct, but Lauren’s Mum knew it wasn’t ‘just nothing’ and made the decision to stop waiting by the phone and instead travelled to Scotland to her daughter’s bedside as she waited for test result after test result.
“It would probably have been the end of February, early March 2018, when I started noticing things weren’t right – I didn’t know what I thought was wrong, but it was just little things. The biggest thing was I had gum issues, I had bleeding gums, they were quite sore. Again, you don’t think worst case scenario, so I just thought I had to go to the dentist, and look after my teeth a little better. I went to the dentist and we got that sorted, I was on an antibiotic, it sort of cleared up but then I also got a root canal. The dentist was concerned and she sent me to the dental hospital in Glasgow – but with the dentist they don’t do bloods so it was undetected.
“I did get my tooth sorted but on top of that I had things like I wasn’t sleeping well, I thought that was why I felt run down, that’s why I was struggling to walk to work each morning, I couldn’t walk the length myself without struggling to breathe and having to stop multiple times and I just thought I’d got really unhealthy, hadn’t been sleeping well was eating rubbish I thought I needed to get fit and healthy and again. It seems so silly looking back on it. I was getting pains in my hips, I had this lump under my armpit which the doctor just brushed off. They said it was swollen lymph nodes but it would go down. Everything else was ignored by my doctor. It wasn’t until my mum came to my rescue and made the doctor take a blood test that they realised that my bloods were not very good.”
Once Lauren’s Mum arrived, things started to move a bit quicker and eventually a GP sent Lauren to her local hospital to get a blood transfusion. After weeks of back and forth, things started to seem quite urgent but Lauren went along with it just hoping to get everything sorted so she could go back to her normal life.
“It was about 4pm the GP had phoned and said that I had to go to the hospital. She didn’t really say anything she just said I needed a blood transfusion. So we went to the hospital and I was seen quite quickly, but I think I was just that low on energy that I had no idea what was going on. They took us in and they did more bloods. I thought I was just in for a transfusion, it was completely over my head
“They had spoken to me and my Mum and one of the nurses said they were bringing someone down from haematology – I don’t know if I was just that ill that I didn’t really know what was happening but my Mum at that point really panicked when they said about the haematology consultant. They came down and spoke and she was telling us all these things and I had this sense it was cancer, that it wasn’t good. I had my mum one side of me crying and my fiancé was the other side of me in tears and I was just sitting there thinking ‘what’s happening?’”
That night, Lauren went straight into the haematology department and didn’t leave for another four weeks.
“[The next day]I spoke to one of the top consultants for haematology, he hinted that they were thinking leukaemia, they didn’t know what type…but they were thinking acute myeloid. It all went from there, the Monday after I got my bone marrow and the Tuesday or Wednesday I started chemo.”
Lauren recalls starting treatment and not yet registering the news she had been given, and what she was going through.
“I think I was just dazed. I surprised myself the first couple of stages of treatment, I don’t know if it ever fully clicked in. I think I just got on with it. The first few stages I just thought I need to get better, I want to get better and I need to focus on treatment, and that was the only attitude I had at that point. That was the only thing I could think or feel, ‘I just need to get this out of me’”
As soon as they got the news of Lauren’s diagnosis, her Dad flew over to meet them in Glasgow and her parents stayed closeby to the hospital to be there for their daughter.
“My dad came over with my younger brother so that was them, they didn’t leave for six months. They had hired a flat, like a holiday rental bungalow, and it was one of the nurses said to us ‘has anyone said to you about CLIC Sargent?’ because we had no idea about the house. There was also a Ronald McDonald house but it’s more for the younger ones. The nurse put us in contact with CLIC Sargent social worker and she got us set up with the house and mum and dad were there for six months. It was minutes from the hospital
“The house was lovely, it took a lot of pressure off. I wasn’t working, so I wasn’t able to keep up the flat I was living in so my fiancé moved back in with his mum and dad because they’re from Scotland. It was such a transformation so whenever I could get out of hospital at least I had somewhere to go that was safe and clean, and everyone in the house understood
“You feel like you can just relax in them, it’s comfy, it’s clean – for someone with leukaemia and low immune systems it’s reassuring knowing that you’re going somewhere that is being spotlessly looked after. It was good for my Mum and Dad, the team behind the house, the manager and the cleaners were so friendly and welcoming and that was a nice comfort for my mum and dad because they were in it the most. On the odd day they’d maybe let me free from the hospital, I could go to the house and I wasn’t that far away. There were a number of times I took infections when I was out of hospital and it was reassuring that I could actually see the hospital from the house, so I knew that if anything did go wrong I could be there within seconds.”
Lauren went into remission but unfortunately by March 2019, her cancer had returned. Lauren received the news that she had relapsed and needed to go through treatment once again.
“I had a stem cell transplant last October. That was in Northern Ireland, I got my treatment and then I went to Dublin for my transplant. CLIC Sargent helped me out in Northern Ireland too, they were really good in Northern Ireland.
“My mum got placed in the CLIC Sargent house in Belfast, which was really good. It was a lot different, in Belfast there’s two houses, there’s one for younger kids and then there’s one that’s more for us adults and I think it was good for my Mum, they weren’t travelling distance but it saved so much time and travel costs. I was quite ill and ended up going to ICU and they were able to be called and there in two minutes, it was really good that way.
“Because they were in the house with other families that had grown up kids I think that really helped too. I think it helped my mum and dad in Belfast that they could speak to these families, as they had kids that were similar ages and were on the same ward that I was because in Glasgow it was just us and all the young ones were in the children’s hospital so they didn’t really have the same relationship.”
Lauren’s finished her transplant in March 2020, just as the national lockdown came into effect.
“When covid hit, I was just coming out of treatment, I was coming home from Dublin from my transplant, and I was supposed to be getting out and about and building my strength and building my fitness. Because we had to be isolated and because of the anxiety of going outdoors ‘what if I got ill from someone?’, that stopped a lot because I think I could have been further along had covid not happened, if I’d have been able to get out and about and get some fresh air, get walking and feel comfortable in my surroundings it would have been a lot more helpful to me.”
Throughout her treatment, Lauren was supported by Young Lives vs Cancer social workers, both when treated in Glasgow and again in Belfast.
“Most of my interactions with the social worker in Scotland was in hospital but once I went home she was fantastic, she transferred everything over to the team in Northern Ireland for me. Whenever I was back home in Northern Ireland, I’d have regular catch ups with my social worker, I’d meet him and we’d go for coffee and cake and just have a chat. If I needed any help or advice with anything he’d help with it.
“My fiancé moved over to Northern Ireland with me whenever I went back home and he even helped him trying to find him work in schools, we were trying to get him a teaching job but he was trained on a different system so he supported with that. I had the one main guy, Simon, and he was so good – even when I went back into hospital I saw him quite regularly, he always came in pestered me so I could moan and just have a winge and he always listened
“My social worker in Glasgow, she was called Lesley, introduced us to different funds, different routes for support and things like travel expenses for my mum and dad. Even in the house occasionally they’d get handed £30 vouchers for Asda or Sainsburys to get some food, they got petrol allowance sometimes. It was crazy all of the things they had on offer. There’d be random events in the house, with party food from Morrisons, wee things like that helps whenever you’re not working just to have wee nibbles around the house. They always had tea and coffee filled up, just little things like that.”
Now, Lauren is living back in Glasgow with her Husband and, with help from her Young Lives vs Cancer Social Care team, is doing a Masters degree in Strategic Public Relations and Communications.
Posted on Monday 14 June 2021