“Without them there’s a lot of things I wouldn’t have known”
Three-year-old Imogen’s parents took her for an ultrasound as she had been struggling to go to the toilet and had a urine infection. During the scan, doctors noticed a small lump, which they later found out she had a rare glandular tumour. Imogen had to have surgery and months of chemotherapy treatment at John Radcliffe hospital in Oxford.
Imogen and her family were supported by Grace, a Young Lives vs Cancer social worker, who helped them throughout treatment especially to face the financial impact a childhood cancer diagnosis brings.
“Initially you never think the worst, because cancer didn’t run in our family, no-one’s had it so it didn’t even occur to me. No-one actually said the word ‘cancer’ it was just ‘oh we need to check this, we’re not sure we need to run this test, we’re not sure we need to see what it is’. When you think of cancer there’s normally a lump or a high temperature or blood in her urine, she had none of that so I didn’t think.
“It was only when we got that call on 4 o’clock on the Tuesday to say ‘can you come in tomorrow as a family’ that you start to think ‘ok, why?’ and then you start to think ‘there’s something not right here’.
“We were put in a side room and we met with the consultant. He then eventually said ‘yes we have found something and it is cancer’. I just burst into tears and just cried, my husband held it together for a little bit and then I think he got upset. Imogen was there and she was like ‘what’s wrong? Why are you crying?’ and then an oncologist came in. It was just devastating, I don’t think I could say the word ‘cancer’ for weeks.
“They explained that initially we’ll do four weeks of chemotherapy, we need to do a CT scan to check that it hasn’t got any bigger since the last time we spoke. They said ‘would you like us to show you around the Kamrans ward’ which is their cancer ward, which just felt really surreal. It’s a part of the hospital you walk past and never think you’re going to go in there.
“A lot of it was a blur, they said things we didn’t really understand or listen. They showed us round, we met the play specialists, Imogen was playing so they talked to us and said ‘this will become the norm for you and this will become your family’ and it’s true. It becomes a routine to go for chemotherapy, you go home and wait to see if she spikes a temperature. It was a surreal day and they gave us information about parking, permits, it was a lot of information and to be honest a lot of it we didn’t take in initially.”
Imogen went on to have four weeks of chemotherapy treatment before having surgery to remove her kidney. Their Young Lives vs Cancer social worker Grace arranged for her family to stay in our Home from Home CLIC Court while Imogen was in hospital for the surgery.
“I spoke to Grace and the house was fully booked – originally it was going to be that we could park there so we knew we could just leave the car somewhere and we didn’t need to worry about moving it or paying extra. I booked a B&B to have the family together, which would have cost us £4-500 just for the Friday to the Sunday. Fortunately, then Grace said there’s been a cancellation and did we want it and we were just absolutely over the moon.
“We went there on the Friday to collect the keys and Lisa was just wonderful; ‘here’s the keys, the house is yours, this is this, this is that’. You could breathe, you just knew there was someone supporting you and there was no one like ‘you’ve got to move, you’ve got to pay for this, you’ve got to do that’ it was like ‘this is your home’ and the kids loved it, it was like a holiday to them. We could swap during the day so Nigel could come in and be with Imogen and I could spend time with the other children at the house or in Oxford.”
Imogen’s family lived miles away from the hospital, which meant paying for petrol several times a week as well as parking and food while she was there.
“It takes us about 40 minutes to an hour, depending on traffic. We’ve had to buy a new car because we wanted a more reliable car. They offer you free parking and we’re really grateful for it and they offer you staff parking but there’s never any spaces so we’ve just never bothered so for the last three months we’ve paid for parking we do it on JustPark where you park on people’s drives. Obviously there’s the cost of fuel and then when you’re in you’re having to buy food, they only cater for Imogen which is absolutely fair enough and obviously it’s not cheap there when you buy anything. It has cost a lot of extra expense.
“The car we’ve got it, it takes more fuel, trying to fill that up because it goes down quite quickly – something I would have spent £30 on maybe a month I now spend £50, 60, 70 every week. Then you think about the parking on top, average parking is about £9 a day and then sometimes we have to extend it so then it’s extra for that. Then when you’re there it can be longer so you end up having to buy drinks and food that could be £40 in a day just for the food. It can definitely add up.”
Grace offered Imogen’s family grants, which helped ease the impact on their finances as well as emotional support throughout her treatment.
“She’s given us advice, she’s just really useful to know. Initially when the doctor said we’ve referred you, we thought ‘no, we’re fine we don’t need anything’ but actually when you get talking, you realise you do need that support and that help and guidance. She’ll say ‘here’s this grant for this’ – it all comes in so handy.
“[Without Young Lives vs Cancer it would have been] a lot lot harder and more expensive, without them there’s a lot of things I wouldn’t have known. I wouldn’t have known who to go to, what to do, who can support you. I wouldn’t have known about the CLIC House. I wouldn’t have known anything really. I think that’s what I needed, for someone just to go ‘it’s alright, we’re here, we can help you’. Not only was there the cancer but I thought ‘i need to do this, I need to do that’ and you go into panic mode thinking ‘how are we going to afford it? How are we going to do this?’. It would have been a lot harder because I wouldn’t know half of what I do now without the support of Young Lives vs Cancer.
“You don’t know what you need until someone says ‘this is what we can do’ – otherwise I would have been paying for that stay over and that’s a cost we really couldn’t afford. It’s been life-saving, it’s helped with mental health because it’s taken the stress off.”
Posted on Friday 28 October 2022