Posted on Monday 16 September 2019
Daniel’s story – travelling 90 miles for cancer treatment after shock diagnosis
Daniel was diagnosed with Hodgkin lymphoma in March 2018, when he was 14-years-old. Mum Catherine explains how travelling 90 miles round-trip for treatment contributed to the strain on family finances.
Over the Christmas period in 2017, Catherine noticed that Daniel was coughing all the time. She took him to the doctor who thought it was a chest infection and prescribed antibiotics. Daniel finished the course of antibiotics but was still coughing – a couple of months later they returned to the GP where he was diagnosed with asthma.
Daniel went away on a ski trip but when he came back he couldn’t breathe. They took another trip to the doctor where he was given stronger medication and referred for a routine chest x-ray. They were told that they would get the results back in around five weeks, but the very next day they called Catherine and told her to bring Daniel in immediately.
Catherine said: “I left work and grabbed him from school; I was quite worried at this point. They told me that the only thing it could be was a tumour. At first I didn’t actually realise that tumour meant cancer and I didn’t understand what she was driving at for ages until she mentioned lymphoma. That’s when I asked her outright if she meant cancer. It was just the worst moment.
“The GP emailed over a copy of the scan to another doctor who told them to get Daniel to hospital immediately. The tumour was life threatening, it was so big it was pushing on his windpipe and he couldn’t breathe. They told me that the cancer itself was very treatable but it was pushing on his windpipe which was dangerous.”
The family had to travel from home in Armagh to Belfast, around 45 miles away – a 90 mile round-trip.
Catherine said: “The night we were told to go we just drove down and I stayed with him that night, leaving my car in the car park which was expensive. The next day his dad arrived from London where he was working at the time.
“Daniel was an inpatient in hospital for the first three weeks because they were really worried that his windpipe would collapse. It took about a week to work out what type of lymphoma he had but once they knew they got him straight on to chemotherapy.
“Within another week his breathing was totally resolved and the pressure had come off which allowed him to go home in between treatment. It was a huge relief because initially on the first night they told me that he might have to be an inpatient for the entire five months of treatment. His dad stayed with him for the three weeks and I drove up and down every day – it was 90 miles each day but you do it for your child.
“I work close to home most of the time – with a couple of days a week in Belfast – so suddenly driving to Belfast every day, including weekends, was tough. The car parking at hospital wasn’t cheap. At the time someone did say to us that they would sort us out with a pass but it just didn’t happen and we didn’t want to push, it wasn’t really on our radar. We felt lucky to have good jobs which meant we could cover the costs that suddenly appear.
“For the first couple of weeks when Daniel was in hospital I was obviously in shock and I tried to keep working. I was driving to hospital in the morning, checking in on Daniel and then going off to work to come back at lunchtime, back to work, then back to see him again. After a week or two of that and trying to keep my case load going we realised that I’d have to stop work. That’s when finances became more of an issue – we weren’t broke, but I knew I needed to be more careful.”
During Daniel’s treatment the family were able to stay at Paul’s House, one of CLIC Sargent’s Homes from Home in Belfast, which helped Daniel and his parents to get away from the ward but still be close-by until he was ready to be discharged, and save on the costs of otherwise needing paying for a hotel.
When Daniel was better, the family travelled back and forwards to his appointments – a 90 mile round-trip each time.
Catherine said: “Travel expenses are all part of the strain on finances – putting petrol in your car and paying for hospital car parking. On top of that you have the issue of food costs. We wanted to buy fresh, healthy food for Daniel, which means you have to buy it in small amounts because there was no fridge to store it in the hospital room, so it gets very expensive very quickly.
“We met a lot of people at hospital who were really struggling. We met parents that were finding it really tough financially, relying on charities to give them grants or whatever.
“You shouldn’t be worrying about money when your child has cancer. Being told your child has cancer is the worst moment of your life. You have to keep everything ticking over, you’ve got your mortgage to pay for and bills. Your bills go up, you’re buying extra food in and also paying for hospital car parking. We also spent a lot of money on things for Daniel at that time. He couldn’t go anywhere so we would get him games and a PlayStation so that he had things to do. Both parents can’t work so somebody has to give it up. I still got paid some of my salary so I didn’t lose everything, but not every employer would do that. Think about how much it costs – £100 a week, travelling 90 miles a day or more.”
Daniel had five months of chemotherapy and currently goes to the hospital every three months for scans and check-ups.
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