Posted on Thursday 6 September 2018

Oliver’s story – Our cancer commute to hospital is 120 miles each way

Oliver was diagnosed with leukaemia in August 2016, aged eight. Mum Nicky explains how two years of treatment 120 miles from home has cost the family.

Oliver (left) and his brother Ben when the family were staying at Sam's House in Bristol

Oliver (left) and his brother Ben when the family were staying at Sam's House, CLIC Sargent's Home from Home in Bristol

Initially when they said leukaemia we were just very frightened and devastated – we didn’t know what to expect, didn’t know what the implications of that were.

Treatment

Oliver was in isolation for seven weeks. Only four named people were allowed in with him including me and my husband Mike. Oliver’s brother Benjamin wasn’t allowed, he was too young.

I was up in Bristol the entire time. Mike would drive up from Plymouth on Friday night with Benjamin and they would stay at the CLIC Sargent Home from Home, Sam’s House. On Saturday morning they would come up to the hospital and Benjamin and Oliver would wave to each other through the window. We bought them walkie-talkies so they could talk to each other. They would talk about school, lego, minecraft, tag rugby. They are really good friends.

Travel costs

From our house in Plymouth to Bristol Children’s Hospital is 120 miles each way. On a good day it takes just over two hours each way, but with the holiday traffic over the summer it has sometimes taken as long as four hours. We have worked out that it costs us £80 for a return trip, and that’s every weekend. And that’s before you even consider wear and tear. We have estimated with wear and tear it costs about £120 per journey.

We have made that journey every week since May. That is £1280 this year alone, just on petrol. The first time Oliver was ill we were spending £40 a week every week for 5.5 months. That’s £880, so we have easily spent more than £2000 on travel.

Spending that money is unavoidable. It is vitally important that Oliver gets to spend time with both his parents, and it is so important for Benjamin to see his brother. Siblings are often the bystanders in all of this and we are very conscious of his health and well-being, too.

Day to day costs

And these travel costs aren’t the only thing that hits us financially. I have had to give up work, because it is the second time around for Oliver on treatment.

We have had to really look at what we are spending, the type of food we are eating. Treats are something we have to think really carefully about.

Oliver's mum Nicky

When we go on days out, it used to involve a meal in the café, an ice cream. Now we think about free places we can visit, and take packed lunch. Small things like that. We have tried really hard for it not to be noticeable to the children.

We are very fortunate in that we didn’t have debts coming into this, and that Mike is employed rather than self-employed. But we have met families that aren’t as fortunate with their circumstances and it does cause a lot of extra stress and anxiety. That’s where CLIC Sargent social workers are so amazing. But we also know that if this goes on a lot longer it will have significant consequences and we are going to end up in debt.

Emotional well-being

Nobody asks for this to happen. Nobody wants to be in this situation. Not having any support with travel costs can really affect a families’ emotional wellbeing because it comes at a time when we are already anxious and worried, so it just another thing to add to the pressure. It would make such a difference to people to not have to think about the cost of just getting to treatment.

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

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