Kathryn’s story. Traveling 50 miles to and from hospital for treatment.
Kathryn was diagnosed with Hodgkin’s lymphoma a week before her second year university exams. She had been feeling unwell for a few weeks but at first was worried it would jeopardise her grades, so tried to ignore it and continue her studies. After a trip home during the Easter holidays, her mum was worried so went back to uni with her and made sure she got seen by the doctors. They later found out she had stage two Hodgkin’s lymphoma.
Kathryn went home to live with her parents during treatment. They would have to travel from their home in North Wales, 50 miles to Manchester and 50 miles back every time she had treatment or appointments, often several times a week.
“I first noticed it around about February 2019, I was in my second year of uni and I’d just finished my winter exams. I’d been ill for about a week with something and after that I was feeling a bit rough. I didn’t want to think about it because my uni was really important, I wanted to make sure I could pass my exams, I just ignored it and tried to push it to the back of my mind. It wasn’t until the April time in easter when I came home my mum was like ‘you’re really struggling’, I just crashed when I got home, I couldn’t do anything that whole easter. My mum said ‘you need to go to the GP because there’s clearly something wrong’
“He said ‘I’ll send you for a chest X-ray but it’s not going to show anything’. The next week I got the chest X-ray and I remember them saying ‘can you wait in the waiting room just for a few minutes’. My mum had come to stay with me at uni at that point because I couldn’t do anything for myself, I was really struggling. They let us go from the waiting room after a few minutes but you know when you just know something’s come up. I’d gotten home and a few hours later, I was having another GP appointment to talk about things. He looked very sheepish because I think he’d seen the X-rays from earlier that day and he said ‘it could be something called a lymphoma’ and I was like ‘i don’t know what that is’
“Then I got a phone call from the hospital saying ‘come in two days, we’re going to do a load of tests on you’. After being there for a few hours and having some scans, they admitted me to hosptial saying there’s a lump in my chest and they don’t know what it is but they had the lung cancer nurse specialist there in my appointment – He was saying ‘it’s not lung cancer but there’s a reason I’m here’. A week later – this was a week before my final exams so I never got to take those exams because I was in hospital – I got diagnosed with stage 2 hodgkin’s lymphoma.”
Kathryn went back home to her parents house and started chemotherapy treatment.
“I was transferred to Chester, which is much closer to home and I had two treatments there, I hated it there, the consultant wasn’t a consultant for my cancer because it’s quite a small cancer unit and everyone there was old people I was one of two younger people there, I absolutely hated it. I had my scan after four treatments which showed it shrunk but not enough. The treatment they were going to put me on next was much harsher and because I hated being at Chester my consultant said ‘why don’t you move to a different hospital’”
Kathryn transferred to Manchester hospital, where she had to go four times every two weeks. While the unit was much more age appropriate and Kathryn could meet other young people like her, it was a long journey from home each time.
“I had to go back and forth to the Christie from north wales so that was 50-ish miles, a bit more than that I think, it was exhausting. Time wise on a good day it takes about an hour but because I started my treatment in the morning, we would be travelling in rush hour so we would have to give about an hour and a half to make sure we got there in time.
“I was exhausted, we ended up having to have a first aid kit we made up with anti-sickness tablets. The worst would be if the car broke down, that happened a few times. We had to buy a new car for my treatment because our car had broken before – my nanna had to help with purchasing a new car.”
As well as the cost of a new car, her parents had to pay for fuel to get to and from hospital as well as parking. Their Young Lives vs Cancer social worker helped organise them being able to claim back travel expenses but it didn’t cover everything.
“We had the travel costs paid but it didn’t cover enough. It would cost us about £14 to get to christie and back in one day of travel but we’d only get £10 for travel costs. It was most of it, but it wasn’t all of it.”
Kathryn’s social worker also helped her to access PIP to help with the costs of cancer. It took a while for the money to come through after applying, which left Kathryn’s family struggling with travel costs up until it came through.
“We were really struggling with travel costs before it was getting reimbursed I was down to my last £200 in my bank account, and I was really worrying about how my family were going to afford it.”
Rachel, Kathryn’s Young Lives vs Cancer social worker, supported her and her family throughout her treatment.
“I owe her so much she’s been absolutely amazing, she’s sorted out so many things, the amount of support I’ve had from her is incredible. She’s always been there if I need to talk to anyone, most of the grants I’ve had have come through from her. I remember at the very start she was able to get us a grant to get a drier for the house because my mum was worried about being able to dry clothes and bedding – a big symptom of mine was night sweats so I would be drenched and therefore have to change the bed constantly and we were worried about getting things dry. She was like ‘it’s fine we’ll get you a drier’
“She put us in the direction to apply for PIP, she helped me fill out the form and helped me remember things to put down for it – I wouldn’t have been able to get PIP if she hadn’t have helped us, which again helped so much with costs of travel. I was worried about my travel costs while going through treatment for cancer and that’s something I shouldn’t have to worry about and she completely took away that worry.”
We're calling on governments across the UK for a Young Cancer Patient Travel Fund to help cover the cost of travelling to treatment for all young cancer patients.
Posted on Tuesday 23 May 2023