Posted on Friday 7 September 2018
Heidi’s story – The shock that it was cancer was huge
Two-year-old Heidi had to undergo two and a half years of treatment since she was diagnosed with Acute Lymphoblastic Leukaemia (ALL) in September 2015. Mum Paula explains how Heidi’s cancer diagnosis increased costs and stress.
On the day Heidi was diagnosed, I remember the nurse asking us what we thought it might be. I don’t even know why I said ‘leukaemia’.
I certainly didn’t expect her to say, ‘yes that’s what it could be.’ As Heidi seemed so well in herself we did our best to convince ourselves it wasn’t leukaemia. The next day we had the diagnosis confirmed and the shock that it was cancer was huge. Our two-year-old daughter, and only child, had cancer – we couldn’t quite comprehend it.
Heidi's mum Paula
From Heidi showing a vague symptom of lethargy, through to leg pain, through to diagnosis, had taken less than a week.
Heidi was able to receive the majority of her treatment at our local hospital in Bath, as an outpatient, and we had regular appointments throughout treatment. Sometimes these could be twice a week then monthly during maintenance.
Apart from the first week of treatment, my husband Ian continued to work, as he was unable to take time off, having only started at his company 3 weeks prior to diagnosis. Logistically it meant Ian had to commute between home and Bristol and then to the hospital in Bath or Bristol, in order to visit us until late. All after doing a full day at the office!
If Heidi got a temperature whilst Ian was at work it also meant that we would have one car permanently parked at the hospital, whilst we were inpatient for a minimum of 48 hours (thus incurring cost) plus our second car as Ian visited.
When we did have to take her to the local hospital in Bath it was only 11 miles away, but in rush hour traffic and at certain times of the year (e.g. the Bath Christmas market), it would often take up to an hour. The hospital parking was also horrendous and often we would have to wait a long time before a spot became available. When Ian wasn’t working he could sometimes drop us off and then meet us on the ward, once he eventually found a space.
I estimate that we have probably spent near to £1000 on car parking costs and fuel costs going to and from hospital. It’s just something that you don’t really need when you’re already facing financial hardship because one of you has to give up work, so money coming into the house isn’t the same.
Fuel bills are going up because you’re wanting to make sure your house is warm for the child. Food bills go up because they are so fussy eating. Transport is something you take for granted.
Other financial pressures included rising food bills as Heidi had fussy eating patterns as a result of chemotherapy and phases of cravings whilst on steroids (including wanting pasta for breakfast and lots of snacks!). In addition we had rising utility bills as Heidi and I were largely housebound so using more of everything.”
Heidi finished her maintenance chemotherapy treatment in February 2018 and is now a bundle of joy and energy – as you’d expect from any five year old!
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.
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
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