Posted on Monday 2 September 2019
Daniel’s story – travelling 180 miles for life-saving cancer treatment
Daniel was diagnosed with acute lymphoblastic leukaemia in December 2016 when he was just six-years-old. Mum Alison explains how treatment 180 miles away from home has cost the family.
Daniel’s mum Alison started worrying about him after he became unwell with a high temperature while on a family holiday. Up to this point, Daniel had been an exceptionally well child so for his parents it became obvious quickly that something was wrong.
When Daniel started to go off his food and suffer with frequent tummy paints Alison, a GP herself, took him to the doctors where she asked for a blood test. The tests came back abnormal, and by then Alison was becoming suspicious that it could be leukaemia.
After more tests at the local hospital in Inverness, Daniel was transferred to Glasgow where they ran a bone marrow test which came back inconclusive. A couple of days later, a further test showed that he had cancer.
Alison says: “I suppose I was in shock and denial. Denial and anger are the emotions I hear my patients talking about when they get a cancer diagnosis, and I felt no different.
“We told Daniel that he had cancer and I didn’t really think he’d know what cancer meant. The first thing he asked was ‘Am I going to die?’. It was tough, but we talked to him about how the chemotherapy was going to take the cancer cells away and make him better. The first few weeks went by in a blur.”
“Daniel’s main treatment centre is in Glasgow. This is where we had to relocate to for the first six months of his treatment. My husband, Kevin, was travelling up and down to home regularly, at least once a week. Our other son, Conor, was staying with my parents in Edinburgh so we were regularly back and forth to see him every couple of days. Glasgow is a 360 mile round-trip every time we have to go which can take about four hours there, then four hours back again. It uses up a tank of diesel there and back which is £85 a time.
“Because of the NHS Highland scheme we were able to claim some of our travel expenses back, but this was only around £30 for the Glasgow trip, so we were still out of pocket.
“On top of the actual cost of travel you have to think about your car always being roadworthy too, particularly in the winter months. This included making sure services and MOTs were up to date as well as replacing tyres more frequently. We had at least 2 punctures when travelling up and down the road. On one occasion we had both cars in Glasgow so we could manage while they got fixed. However on the other occasion I had to call our roadside recovery to help me. We also considered winter tyres, due to the weather conditions, which obviously have an additional significant expense. When you’re so far away from home flat tyres are always a worry because you just want to get your child home safely.”
“The CLIC Sargent Home from Home in Glasgow was a lifeline for us. My husband was travelling up and down to home to be with us, as well as continue with work and make sure that our other son Conor was okay.
“The boys called the Home from Home ‘the hotel’ – they thought it was amazing! It felt so normal, nothing like being in hospital or your regular hospital accommodation.
“Without the Home from Home I’m not sure what we’d have done – we would’ve been lost without it. The manager was brilliant, exceptionally supportive of us needing to come and go if we wanted to go home for a couple of days. She understood that we needed time to be back at our actual home as a family, but then a place to come back to be with Daniel while he was in hospital. It was great to have somewhere where the four of us could be together when we had to stay in Glasgow – it was just impractical to have Conor in the hospital or in a hotel room.
“When I first stayed at the hospital with Daniel I was sleeping in a recliner chair on the ward whilst Kevin was on a pull down bed but that was not sustainable in the long term. If we weren’t staying there, we were paying out for a hotel but the cheapest would be £40 or £50 a night.”
Daniel has now moved on to maintenance treatment, which is mainly done at the local hospital, a 30 mile round-trip from home. They make this journey at least once a week. But the family still have to travel to Glasgow every 12 weeks for routine checks, or if they have to be transferred by the local hospital for specialist treatment.
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