Karen's story

Karen’s daughter, Caoilfhionn, was one-year-old when she was diagnosed with a neuroblastoma tumour. The initial shock hit the whole family but they found the impact on their finances snuck up on them out of the blue. As part of Childhood Cancer Awareness Month Karen explains:

Karen's story

"The initial shock was unbelievable. In fact in many ways it’s still there, so it is. I was just running on adrenaline back then.

“We live in Derry, so we are about 75 miles out. During those first weeks in October we basically lived in the hospital and we didn’t know how long we would be there. We knew nothing and just had to feed ourselves and get by.

Costs of cancer

“Throughout the time that they were doing more tests we were travelling very regularly back and forth. We were offered Paul’s House [a CLIC Sargent Home from Home], but we weren’t able to get anyone to look after our other boys and we couldn’t break their routine that much. So we were going up and down the road every day. 

“We had to do the travel because we couldn’t sort the childcare.”

“Overall I would say we were travelling up and down for cumulatively just over two months. We hadn’t thought about the financial impact, but we certainly noticed it when it hit us. We had actually just changed the car recently, which was a mistake because we were repaying it and that was a major thing to think about.  

All adding up

“Every journey was costing us about £20 and that is before you’re worrying about feeding yourself. At the start you are getting help from family and people are giving food and things, but that doesn’t keep up with it. Hospital food is that perfect mixture of expensive and horrible.

“My husband had to take time off work, as sickness and he was just given statutory pay. So that was a big hit. I was working part-time as a secretary. During the period of treatment I basically stopped, so we were just on savings and the support that we could get.

“We were spending the best part of £200 a week during the bad times. That is a huge amount of money to cope with spending. Without the support that we received we would’ve been in trouble. 

Home from Home

“We eventually got it sorted and were able to stay at Paul’s House. The difference the house made to us was just unbelievable. Suddenly you can take a moment to rest and you are not as tired as you were before. Most of the time when you’re travelling that much, you’re basically a zombie. The exhaustion can be overwhelming and this helped so much. 

“At no point was I thinking about my own health. There wasn’t room for it in my head. I had too much to do and organise and worry about.

CLIC Sargent social worker

“We had a CLIC Sargent social worker called Gillian who we met quite early on in everything. She was fantastic. She helped me with a full benefits check and she arranged the CLIC Sargent grant, which was a great cash boost at such a difficult time. 

“She looked at every possible way to get us support and it was things we just wouldn’t even have thought of. If we didn’t have that help we would’ve been in real trouble. 

“The forms that they provide for financial support are just a nightmare. I am so happy I had help. You don’t know how things will progress, so you don’t know what help you will need. It’s hard work to think about these things, let alone actually put pen to paper.

A Christmas present

“We ended up finding out a couple of days before Christmas that she would not need chemotherapy and that the tumour had stayed in one piece. It was just a case of follow-up treatment, but no more major treatment. That was an amazing moment. It was a great Christmas present.

“We were so happy that she didn’t need chemotherapy just for health purposes, but in hindsight I don’t know what we would’ve done financially. The implications of a long-term treatment like that are so bad I can’t let myself think about it. I honestly don’t know how we would’ve coped.”

Childhood Cancer Awareness Month

This September, during Childhood Cancer Awareness Month, CLIC Sargent is focussing on the financial impact of cancer. It’s vital families can access the financial support they need.

Stand by young cancer patients and their families - join our Cancer costs campaign and donate online this Childhood Cancer Awareness Month.

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