Lou Street interview for My Last Summer

9 June 2014

The following interview is available free for reproduction in full or in part.

 

Lou Street does not look like someone who’s dying. In fact, sitting on her patio sipping tea while various family members bustle around, sporting a deep tan from a recent holiday in Spain, she seems the epitome of relaxed contentment, even serenity. Such serenity is an achievement in itself, in a chaotic household that is currently home to a husband, her four children, one grandchild, three dogs, a pig and a sheep.

But appearances can be deceptive. Lou has motor neurone disease. She has already exceeded the two-and-a-half years she was given to live in December 2010, but she is dying.

Lou has taken part in a Channel 4 documentary series, My Last Summer, in which five people with terminal illnesses are brought together in a residential manor house to support each other, and to discuss their hopes, fears and legacies.

Here, in among a menagerie of animals and humans, and amidst plentiful laughter and cups of tea, Lou gives a remarkable insight into her unimaginable situation, why she agreed to take part in the series, and how this quite extraordinary woman keeps her spirits up.

 

When did you discover you had motor neurone disease?

I had a hysterectomy operation in November 2009. My brother passed away a couple of weeks after my operation, so I had to deal with a lot of paperwork, and I kept dropping things. I put it down to the op, and I went back for my six week check, and mentioned to my consultant that I was having a problem with my thumb. He said “We never touched your thumb! What’s going on here?” I had so much going on, I still hadn’t buried my brother, and so I said ‘Just leave it.’ And I was lucky, because he wouldn’t let me leave it. He passed me on to a neurologist, and I had a year of tests. And on December 23 2010 I got my diagnosis, motor neurone disease.

 

What was it like being told something like that?

Going through the tests was worse. I had a year of being electrocuted, of needles and MRIs, and I was being tested for cancers and this and that. So you self-diagnose all the time “Oh my God, now I’ve got this!” “Oh my God, now I’ve got that!” I was forever on Google. So I’d Google the tests and find out what they were for. In the end I phoned my consultant and said “Look, what the hell are you looking for? Are you telling me I’ve got cancer?” And she said “I’m 99.9 per cent sure it’s not a cancer you have. We’re testing to rule them out.” Then the arms started to get weaker. And eventually this ALS motor neurone disease kept cropping up on my searches. And I was like “Jeez, I don’t want that, let’s get off that page.” So by the time I went to see the consultant and she said “Lou, you have ALS,” I just said “Yeah, I know.” She said “Do you know about it?” And I said “Yeah, I’ve been Googling.” And then I said “How long?” And she said “About two-and-a-half years.” So my poor friend who had come with me said “What, until she goes into a wheelchair?” And I remember the consultant looking at me and saying “Do you understand?” And I said “Yeah, that’s my life. That’s when I’m going to die.” So I wasn’t exactly relieved, but at least I knew what I had.

 

And you’d had pretty strong suspicions anyway?

Yeah, it just kept ticking all the boxes. But the weird thing is, before I’d even had the hysterectomy, I knew my body was dying. I didn’t feel right. I remember sitting over there, and my brother came up and said “What’s up with you?” And I said “I can’t describe it any other way except to say that my body is dying.” So when they said that, it made sense. It made sense of how I didn’t come round from the hysterectomy like I’d been supposed to.

 

How have your family and friends reacted?

My friend who came with me for the diagnosis, who I’d grown up with – I haven’t seen her since. She can’t cope with it. It’s fair. I was upset – she’s the closest friend I’ve ever had. I get it, though. There’s no bitterness any more, I understand it, although I was very bitter at one stage. My husband and my mum wanted to wait for the second diagnosis, which you have to have a few months later. They kept saying that the tests were wrong. But when I got the second diagnosis, it all went pear-shaped for everyone. The thing is, everyone looks at Stephen Hawking and thinks that’s what’s going to happen to me – I’ll live forever and write books. I am not Stephen Hawking! It’s hard trying to explain motor neurone disease without referring to him, but he is not the norm. It was a battle to get people prepared, because that’s what I was trying to do. Prepare my home, prepare my family, prepare my funeral, prepare everything, because I’m not going to live until I’m 90.

 

How’s your health at the moment?

It’s okay. It’s had a bit of a decrease, and I know we’re in another change. But I accept that now. I was told on my last visit to the hospital, that the positive mind has made the disease go slower. I was on a downward spiral, and now it’s sort of levelled out. No case is the same, but I’m hoping to see the original consultant who diagnosed me, who’s been on maternity leave for ever. I want her to turn around and say “Wow!” Because I shouldn’t be here now.

 

So how much of that do you think is down to having a strong and positive outlook?

90 per cent. There’s no medication that helps much, other than one that helps keep away muscle cramps and twitching. 90 per cent is up here. I don’t think about the disease. I don’t think that I’m disabled. I just know that I’m not going to be here forever. I am dying of this - but when I'm ready. I don’t wake up and look in the mirror and think “There’s someone with motor neurone disease.” I think “Oh my God, what have you done to your hair this morning?”

 

How did you find out about the programme? What was the process that got you involved?

When I got my diagnosis, I was invited to the Ellenor Lion’s Hospice, because I’m now a terminal person. Through there I was approached by someone called Tessa who works for the hospices, who I already knew, who said that an email had gone through to the hospice saying they were making this programme, and did she have anyone in mind who she thought might be good for this. And she sent me a message straight away saying “Lou, it’s got to be you. Your house is so crazy and chaotic.” So it was through her. So I agreed for my details to be passed through, and someone was sent from Love Productions, and she explained it all to me.

 

And what was it that made you want to take part? Why did you say yes?

I sat and I wondered about whether or not to do it. And I decided I wanted to help somebody. If I can help one person, who’s going through something, or has just been given their diagnosis, or has just lost someone, if I can help just one person, then I’m happy with that. I’m really happy with that.

 

Did you have any misgivings about taking part?

No. Now there is! There wasn’t at the start. I think my husband was a bit apprehensive. I didn’t know how this was going to go, so I just went with it. If I didn’t like something I’d say. I found the whole thing a challenge, but an inspirational challenge. I discovered the different ways people cope with a terminal diagnosis. So my husband was happy for me to do it, but didn’t want to get involved himself.

 

You said you didn’t have any misgivings about it before, but you do now. What do you mean by that?

I’ve lost three very good friends who I made on the show.

 

Were you nervous before you rocked up at the house for the first time?

God yeah! I don’t even like having my photograph taken. So when you get out and there are cameramen everywhere, you think “Oh my God!” I didn’t even think that far ahead, about my hair looking nice or my makeup or whatever. I’m not that kind of person normally, but I think I would have done a little bit more had I thought about it. Also, my friend Frankie had said to me just before I left “I just hope and pray you don’t come back depressed.” And I said “Why would I come back depressed?” He said “Lou, they might not be like you. They might be messed up about dying.” And I thought about it all the way up there, the whole three-and-a-half hour journey, thinking “Oh my God, what if they are like that?” That was the worry. My stomach was doing somersaults – and I never get nervous.

 

Where was the house, and what was it like?

It was stunning. It was in Southrop the Cotswolds, and it’s used as a cooking school. But the actual place was absolutely amazing. We had our own space, there were loads of grounds. My second day of being there, I got on my electric scooter and I was gone. It took them four hours to find me. I was just taking pictures of everything, it was stunning.

 

Did you have people cooking for you?

Yeah, we had Marjorie Lang, who won Masterchef, cooking for us. The food was stunning. They grow their own ingredients, they grow their own flowers that they put in their food. Everything was stunning.

 

What was the whole experience of all being there together like?

Nerve-racking the first time, because we didn’t know each other. We had our introductions – it was like an AA meeting “Hi, I’m Lou, and I’ve got motor neurone disease” – and then once we’d done that, it was fantastic. Everything about it was just brilliant. To be able to sit and talk to other people was amazing. It was sad, because you got to hear their stories, and hear about their families, and what they’re going through. And then meet their families, which was fantastic. And then there was the time when Junior passed away, and we went back to meet up without him. That was tough. The place was beautiful, but if you’d taken those people and just put them in a Premier Inn, it wouldn’t have made any difference.

 

How many times did you all meet up?

Four times, over a period of a few months.

 

Did you all form a really special bond?

Yeah, we did. Well, some of us had a relationship with Junior and some of us didn’t. He didn’t attend most of the sessions, he stayed with his wife. But I found it very easy to approach him, it was fine. Some of the other guys maybe didn’t. The bond was definitely there, but the fears that come with the illnesses took over sometimes.

 

Do you think part of that bond was down to the fact that you are the only people who can really understand what each other are going through?

Definitely. Even though I’m not afraid of dying, and I’m not afraid of the things that Junior was, I still knew how he felt. I could sit there and hold his hand, because both he and I have thought about the prospect of taking our last breath.

 

What sort of counselling and coaching was laid on for you?
We had Nigel and Ann. As soon as they sensed anyone needed help, they were there. They were very good like that. The sessions that we had were about facing funerals and your death, letting loved ones know – because, for example, I’d let my children know, whereas Andy hadn’t. And I don’t think there’s a right and wrong way of doing it. I did what I did because I know my children, Andy knows his child and that’s why he did what he did.

 

Your kids visited the house. Were you keen to have them involved in the process, and do you think it helped them?

Some it did, and some it didn’t. I’m glad they got to be a part of it. But I did tell them that each one of them had to choose for themselves whether they wanted to take part. And I said that to the production company as well. It’s up to them. I think [addressing daughter] that you got a lot out of it. And I’ve not seen it, but I’m told that I should be very proud of Danny. The only thing I’m worried about is, you’ve got YouTube and all of that. Is this going to be okay for the kids to be able to watch this all the time? Is that healthy? But then, I think that I lost my brother, and I don’t have any way of hearing his voice of his laugh, and I’d give anything to have that. So it’ll be there if they need it.

 

You referred to this earlier – were you afraid of making friends who were going to die? Is there a danger it’s just another emotional thing for you to have to deal with?

God yeah! I didn’t even think about it like that. I just thought “Right, I’m going to meet four other people, and we’re going to talk about our terminal illnesses. Job done. I didn’t realise that I was actually going to like them and want to spend time with them and visit them outside of the filming. And now, losing two of them, I now know I don’t want to go through that again. It hurts. Not because I’m one of the five, and it’s going to be my time, but just because they were my friends. They were part of my soul. I’m gutted, absolutely gutted.

So did you all stay in touch afterwards?

Oh yeah, and still do. I was on holiday with Jane [who died soon before the interview took place] a couple of weeks ago. I was meant to go on the ferries with Ben yesterday, but we cancelled. Sonia, Junior’s wife, I speak to all the time. She’s supposed to be coming up one day this week.

 

Did anything about taking part in this programme surprise you?

Probably that I came away with four friends. I didn’t see it going that far. I just thought it was about siting in a room, and then you come away and go back to your normal life. Well, it hasn’t worked like that. Now I’ve got added people in my normal life, who are more important to me than some people I’ve known a long time. Not because they’re terminal, but because they’re good people.

 

What were the best and the worst moments of filming?

The best moments were the things like seeing Ben smiling when he got to drive his little boat. Drinking champagne with Jane on the little doorstep with a blanket round us at half two in the morning waffling on about complete crap. We didn’t even know what we were talking about in the end. Being quite naughty – making out we’d all gone to be at 8:30pm, because the production company were getting worried that we should all have been in bed at a certain time. Trying to tell me and Jane to be in bed at 8:30pm was really not going to work Instead of arguing the point, we’d make out like we were going to bed, they’d go off, and then we’d get up again. The nurses were absolutely fantastic as well.

 

And the worst part?

Is knowing we’ll watch it knowing that three of those guys are no longer with us. I found it hard to watch when Junior wasn’t there. Now it’s going to be extremely hard.

 

It’s very personal, being filmed going through what you’re going through. Some people might say it was intrusive. What would you say to that?

Not at all. How can I help someone if I don’t show them what I’ve got and what’s happening. So no, if anyone feels that, they don’t know me. I can’t help someone if I don’t show how it is. This is how it is.

 

How have you and John prepared for the future, and what will happen after you die?

John doesn’t prepare for anything. I think he thinks I’m going to live forever. He’s still on that path. He always will be. I have prepared everything, even down to the fact that if he can’t cope with the kids, then my mum’s to step in and stuff like that. Unfortunately I’m not going to be here forever. We have young children. And those young children are girls, and he’s going to really need to be on the ball with them, because they can get away with murder with him. He doesn’t realise it, but I’m teaching him things every day. He doesn’t know that I’m doing it. Like the hair bobbles and stuff like that.

 

You’ve said in the programme that when the time comes, you’d like to be free to make the decision yourself about the manner of your passing and when it happens.

Yeah, I still stand by that, definitely. I feel very strongly about that. Switzerland was a very big choice for me at the start. It still is, but of course you can’t go on your own. If you’ve got loved ones they won’t let you go on your own. So how do you then do it when they’re all sitting there? But short-case scenario, I’m too selfish to go through this until the end. I can’t help that. I get annoyed when I can’t paint a wall, so to be lying there needing to go to the toilet and waiting for someone to come and sort it out for me… you wouldn’t allow a dog to go through that.

 

Looking back at the whole process you’ve gone through in making this series, do you think it’s helped you?

No, if I’m honest. Because I wasn’t looking for any help. I didn’t need any help. I knew where I was. There was nothing that Channel 4 or anybody else could make different. And you can’t change John. He’s the only problem I really have, to get him to accept it. The more you push John, the further he goes away. I’ve been with him long enough to know that. I’m very grounded in what I’ve got and where I’m going and how this is all going to be. And you can’t extend my life until my girls are bigger. But I was glad to do it, just in order to help one person.

 

Which is my last question, really. What do you want this programme to achieve?

To help someone. Someone who’s sitting there, that thinks, maybe like Junior did, “I’m frightened of this.” Don’t be frightened. Open your eyes and see it. See your life now, for what it is. You’re just on a different path. You’re still alive, it’s okay to be living with this. You can still have fun. I hope that someone might see this and instead of thinking “No more, treatment, no more meds, no more chemo,” they might just think “Okay, let’s give it another go.” Because you just don’t know. Just don’t give up.