Transcript

[MUSIC PLAYING]

[TEXT ON SCREEN

Denial and Hope]

JOLENE

I’m definitely, like definitely in a bit of happy denial. But I know it and I don’t really care. I’ve got to see a future. And even if that’s only in the form of dreaming that I’m old and grey, that’s fine by me.

Realistically, no, I won’t be old and grey and 80 years old. I know that that won’t happen. But actually, I can dream that. And I can believe that that will happen because that makes me feel better. I do kind of have my head in the clouds, because what I actually hope is unrealistic.

In some ways I think it’s quite healthy, because if I were to just admit to myself, like, oh, I’m going to die and I don’t know how long it’s going to be, I think I’d be worse off than I am now.

INTERVIEWER

Think you’d die quicker?

JOLENE

Yeah.

[MUSIC PLAYING]

[TEXT ON SCREEN

Sadness]

INTERVIEWER

Quite a lot of the people that we’ve interviewed are older. And quite a few of them have said in a funny way it’s a blessing, that it’s allowed them to get their house in order, it’s allowed them to do this. I think as a young person you don’t think of it--

JOLENE

No.

INTERVIEWER

[INAUDIBLE].

JOLENE

It’s not a blessing. It’s not something that I think, now I feel so differently about life because I’ve had this horrible experience which has changed me for the better. That’s not the case. If I could take it away tomorrow, I would. If I could change one thing about my life, it would be that I wouldn’t be going through this.

But I know I can’t. But I feel angry that I’m young and I felt like I was so able and had the whole world at my feet. And now I don’t have that. And I have, I guess, I have like a ditch that I’m trying not to fall down.

I think what makes me upset the most is the impact that it has on the people that you love, being ill, the impact that it has on your family. And I try so hard to be positive for my whole family and for my parents, my siblings, and everyone. But actually, it’s really unfair.

And I think it’s heartbreaking because they know that they can’t fix it for me. I think they find that really hard. Because I think as a parent, you probably, as a parent you probably just want to protect your children. And unfortunately, this whole situation is out of our control. And they can only do so much. And I think it’s really hard to see. You know it’s not only me that it affects being ill, but it’s my whole family.

[MUSIC PLAYING]

[TEXT ON SCREEN

Death and Dying]

I can’t explain to you how hard it is to feel like your life is going to be over before it’s begun. That’s really unfair. I definitely know that I’m going to keep fighting, but I know that eventually I won’t win. But if I admit that I’m not going to win, then I’ll lose sooner.

INTERVIEWER

That’s quite scary, that admission, isn’t it?

JOLENE

Yeah. Because ultimately, we all know that I’m living on borrowed time. That’s pretty hard to comprehend, but we all know it’s true.

INTERVIEWER

Breathe deeply.

JOLENE

Yeah, that’s a real tough one.

When I’m less well, I guess I’ll end up going and living at home with my mum back in Northampton. And I don’t really want to do that any time soon or by choice, because to me that’s the beginning of a downward spiral. I think once I’ve done that, whenever that might be, it could be three months, it could be three years from now, I kind of know that that’s the beginning of the end. So I’m going to stay standing on my two feet independently for as long as I can, I guess.

What I find really hard generally is knowing that I don’t have a future, realistically. It’s knowing that that’s been taken away from me. I feel a bit, I guess I feel kind of robbed of that. And I’m going to be 30 next year. But realistically, am I going to make 30? I can’t answer that.