Posted on Monday 10 September 2018

Gavin’s story – Doctors thought it was growing pains

Thirteen-year-old Gavin had intermittent pain in his shoulder which everyone believed were growing pains. After two visits to the GP he was referred for an X-ray. His diagnosis was a Ewing’s Sarcoma in his scapula (shoulder blade). Gavin’s dad Craig explains.

Gavin wearing a hat

Gavin

Things took off from there with chemotherapy starting within a week. We were back and forth to Glasgow for the next year – that’s a 120 mile round trip for every appointment, check-up, interim test and visit.

Gavin’s treatment also involved radiotherapy, which saw the family travelling to and from hospital on a daily basis for six weeks.

Getting on with it

You have no option and you just have to do it. My wife would stay with Gavin in hospital and I would carry on with my work and look after his younger brother. You really have to try and keep things as normal as possible for your other child. This is difficult but you really have to try.

There was a huge amount of travelling involved – we were all exhausted.

Gavin's dad Craig

Family spending definitely went up by the hundreds. I would say we would spend more than £300-£500 every month easily. Your bank statements start to repeat. It’s the same stuff – the same petrol station and the same hospital concession stores that are almost as expensive as an airport for sandwiches and food.

Travel costs

We got a £170 grant from CLIC Sargent early on and this went straight on new tyres for the car. Gav was diagnosed in November so it was winter and we knew that we would need them to be in good condition. We wanted to keep the car fit for winter.

We had a few times when he spiked a temperature and we had to travel late at night so that was really important. We couldn’t travel on trains or buses because Gav’s immune system was weak so it had to be in the car.

It costs about £50-60 for a tank of petrol and you’re constantly keeping it topped up as you don’t want to get caught out at all. It’s only when you look at your outgoings properly that you see it’s all adding up. Sometimes you get a wee fright with your bank statement because you’re just nibbling away with costs for this or that – we’re on our feet now but you just have to watch what you’re doing. It could be quite easy just to slip into harder times.

The future

Once Gavin’s treatment was finished, they said there was no evidence of cancer showing. We had several clear MRIs and things were starting to go behind us. You never leave it, but we were starting to look forwards. It was only when Gavin had a new pain in his leg that he was examined further.

We received the news that they had found a second tumour in Gavin’s femur. That was another rare occurrence, for the cancer to be in the scapula and then recurring in the femur. This was a huge blow for us all. Gavin was hit by it, but it was just a case of him saying ‘it will be ok’.

When he relapsed and had to have further radiotherapy we travelled every day again for five weeks, so the travel costs were constantly mounting up.

Gavin is doing OK now – he has a few side effects post chemo. He gets quarterly scans so we have our fingers crossed for no change.

Childhood Cancer Awareness Month

September is Childhood Cancer Awareness Month. This year, we’re shouting about how much young cancer patients and their families spend on travel costs to and from hospital for treatment.

When treatment is at its most intense £180 goes on their cancer commute. As treatment for young cancer patients can go on for years, families are often plunged into debt.

It’s not right, and the government isn’t doing enough to help. Young cancer patients and their families get very little support for travel costs, and most of them don’t qualify under the government’s current system.

This has to change now. Sign our petition challenging the government to create a travel fund for young cancer patients.

They shouldn’t have to worry about mounting travel costs when they’re going through treatment. Together we can change the price tag.

Read more

Childhood Cancer Awareness Month

We asked the government to provide better financial support for families of young cancer patients travelling to and from hospital.

Read more about Childhood Cancer Awareness Month
Young cancer patient, Eliza, and her mum, waiting at the train station

Our cancer costs campaign

The financial cost of cancer in children and young people can be devastating. It's not right.

Read more about Our cancer costs campaign
Young cancer patient Eliza waiting at a train station

Related Stories

Mo’s story – I recovered then relapsed

Tuesday 15 January 2019

Mo was diagnosed with a rare Germ cell tumour in August 2016 after experiencing severe back pain which was dismissed by his doctors. It was Mo’s Aunt, who also works at the hospital, who made him go for tests that led to the diagnosis. Mo recovered but relapsed whilst on holiday celebrating the end of his treatment with family but they all really rallied round for him. Here Mo tells his story.

Support young people like Mo on World Cancer Day

Sara’s story – my cancer came back

Tuesday 8 January 2019

My name is Sara Owen and I am age 18, I am from Colwyn Bay, North Wales where I live with my mum and dad and my Border Terrier, Pero.

Support young people like Sara on World Cancer Day