Interview 03

Age at interview: 26

Brief Outline: He is the co-founder of SIBLINKS, a support group for the brothers and sisters of young people diagnosed with cancer.

Background: His brother died from Acute Lymphoblastic T-cell leukaemia at the age of 12. Age at brother's diagnosis: 14.

Felt guilty that it was his brother and not him who was diagnosed with leukaemia.

During those few days sort of a lot of the emotions which people go through, siblings go through sort of over months, I went through in a few days.

Can you tell me about those emotions?

It, [sighs] it was, I suppose the main one was, why him? Why not me? Because I, we'd do anything for each other and I'd do anything for that to be, have been me and not him. And then so I suppose that was, guilt. And is it, I, I think, I'm pretty sure I thought, is it something I've done? 

Blaming yourself?

Yeah. And...I, [sighs] I suppose there was also...yeah it, it, it was, I suppose yeah, the main thing was guilt. But then there was well, what can I do to help then? And I remember thinking, oh I've heard of all this bone marrow transplants and stuff, would that help? I'll do that. So I, I would have done anything for him. And, I think I said that to Mum and Dad, about this, and they said, 'Oh no, no' [falters] I think they suggested it to the doctors or something and the doctor said, 'No it's, it's not like that.

And, I, looking back I know that's the way I did cope for, I mean I suppose it wasn't really 'til eight to ten years later that I actually started talking about some of the things and it was only when I could talk to someone else who had been, felt all the same things, or similar things, that it finally all came out. It in fact it was when we went down for a, I went down to, for a meeting to sort of discuss the idea of setting up Siblinks. 

And I went down the night before and stayed at [name], that, they, they set up [name] Trust, and who's the other sort of...

Co-founder?

Yeah, co-founder of Siblinks, yeah [laughs] we, we went for a just a meal in the local pub and this is a sort of a story I say about that is, we were in there and the, there was a little pot of cutlery on the table wrapped in napkins, by the end there weren't any napkins left [laughs]. What people thought we were talking about or anything I dread to think [laughs] but we were both streaming with tears, and it was, 'Yeah, I felt that, yeah'. And it was amazing, we were just able to, I mean I talk to Mum a lot, not so much to Dad, but I talk to Mum a lot and but there's only so much you can tell parents. Talking to someone else who's been through the same it's such a difference.

And this was 10, 12 years after?

It was about eight, ten, eight to ten years later. And it would have been so much better for me if I'd been able to do that straight away, or, so I didn't bottle things up. I'm pretty sure it's affected all my schoolwork and stuff, bottled it all up.

When his brother was taken seriously ill to hospital he talked to his other brother and sister so...

Now I, I wasn't with them, I was at home looking after [brother & sister] and so I, I was only told about this by Mum and Dad. But, I think that probably gave Mum and Dad the heeby geebies [laughs], and it, while they were gone it was, I was sort of going through everything in my head and thinking well yeah, it's, everything would fit with it being leukaemia or cancer or something. So but I was trying to put on a brave face for [brother & sister] and trying to say, 'Oh no it'll be fine, don't worry.' When they eventually woke up anyway [laughs], but then Dad rang and said, 'I'm coming home to get you.' And I immediately knew, hang on, yeah this is. And then, when he got home I think he sent [brother & sister] to do something, I don't know get dressed or, I can't remember now, and he said, 'Yeah, we were there sort of five minutes and they said, it's leukaemia.' But he said, 'Don't worry it can be treated, don't worry.' Then we went to the hospital and he sort of, Dad prepared me saying, 'Look he's on quite a few machines' and, but by that point he was... I suppose, to all intents and purposes, if he wasn't on those machines he'd have been dead at that point. But they were trying to do lots of things for him. I, I can't remember how we worded it for and, but my, I was constantly, I was included in a lot of the doctors' conversations with Mum and Dad, and I, I sort of, then took on the role, for [brother & sister] looking back, I took on the role of sort of trying to explain to [brother & sister] and, and help them understand what was going on.

To your sisters?

Yeah, brother and sister. Trying to help them understand, which in some ways was good for them, but I think for me that was probably the worst thing that I could have done for myself, because I needed time to sort of think about things and try and understand it all myself.

Said that the only person he talked to during the time his brother was in hospital was his...

Did you talk to someone about how you were feeling at that time?

At the time I was, as it was all so quick, I didn't really get much chance. I mean I was trying to look after my brother and sister. Try and stop them from running around the ward causing havoc [laughs] but the headmistress came in from my school and I managed to talk to her, a bit [laughs] well as much as you [laughter]. 

Talk to the headmistress [laughing].

Right, yeah [laughing] but...

Was she understanding?

Yeah, I, I don't remember much about what I said to her [laughing] but I think it, it was probably good that I was able to talk to someone. But in some, looking back, I wish I'd been able to talk to someone else who'd had a brother or sister who had cancer. Whether they were still alive or had got better or, or had died whatever. Just being able to talk to someone and sort of thing, well why do I want to punch at, punch things and hit things and scream? Am I weird for wanting to do that. I, I now know that I'm not weird for wanting to do that [laughs] and that's quite normal, in fact it was probably quite sedate that I just wanted to do it and didn't start punching everything in sight [laughs]. Although I, I think my, at, at night when we eventually went home each night, I'm, I'm sure the teddy I cuddled up to got quite a battering [laughs] but those nights I was, I, I, I don't think I got much sleep. I was constantly thinking about him, just trying to rack my brains if there was anything I'd heard that I could do or, something they could try.