When you told your wife what had happened, what you’d been told – did she come with you to the hospital?

No, no. No, she was working. As I say, she’s a very focused researcher and so she said – and by now everything had vanished. So we were sort of, you know, at the back end of the curve, as you would say. You know, we were coasting downhill, we were at the bottom of the hill. This crisis was completely over. So it was just a precaution, really, which I was very embarrassed about because there was no, I was going to go and see my GP and say, Look, I had these symptoms, but they’ve all gone And she’s going to say to me, Well, why are you wasting my time That’s what we kind of expected to happen. And, no, no, so she’d gone to work. And I went and I saw my GP. And then I called her and I said, Look, my GP thinks that I might have had a mini-stroke and sent me off to the [hospital] And she said, Do you want me to come I said, No, no, I’m okay And so I trundled up there, and I was there until 6.30 or something. That was because of the row with the surgeon. And then I, and I called her, then I called her and said, Look, it’s all over. I’m on my way home She said, Do you want me to come and pick me up I said, No, no, that’s okay. I can, there’s a direct bus So I got on the direct bus and that worked out fine. So, so, no, she had, there was no panic there. And then I got home and I explained everything that had happened to her. And she said, well, she just reached for her laptop and she picked up her laptop and she started working on her laptop because she wanted to know what we were talking about. That’s the way it went. And the computer gives you magic access to these things.

She recognised because the face, the FAST thing on the television, the advert on the TV and that’s the only way she would have known. And that’s the first thing she said to the paramedic. If she hadn’t seen that advert she wouldn’t have known what was going on, and then it clicked in her mind straight away. So that absolutely, that advert works absolutely perfectly.

And which bit of that was it that rang bells with her?

All of it. It was the, when my face dropped and my speech began, apparently I was starting to make funny noises. And she said that clicked in straight away and that’s why she reacted the way she did. And she was at, one minute slightly torn between leaving me and getting the telephone to get on to the ambulance, but, she’d remembered that advert, and it obviously works and its it does its job. it’s really good.

And I was going to ask you what was going through your mind during that period of time?

My fear was that I was going to be unable to communicate, that I’d lose the ability to be able to talk to my partner. That I’d be unable to work. Losing my arm, not being able to move my limb was a horrific thought.. And it was the lack of communication is the worst thing. Because… that’s a big part of your personality as well, your voice, and, and, your communication skills. And I was, it really did scare me. And the thought of not being able to talk to somebody that you love. It really is quite horrific.

It frightened my partner more than I realised. Because she was fine. It happened on the Saturday, so she was fine on the Saturday, and she was quite cool on the Sunday. But on the Monday night when we were laying in bed, just sort of dropping off she started to cry and it really hit home. And it really frightened her.

So a slightly delayed response then?

Yes. And I think itbecause you run on adrenaline and the heat of the moment that did, it frightened her a lot.

And what were her concerns mainly?

She thought she was, we haven’t been together that long so she thought she was going to lose me. And also if I ceased to communicate parts of who I am disappears. Because of the other things that we do together, if I lose my voice, I lose a great chunk of what we are. So it was quite important to her.

And what about your relationship at home, I mean, has it kind of altered things at all? I know that you look after your wife in some ways because she’s disabled
Ken’ Yeah.

.. has the, has it turned

Ken’ it’s made my wife more worried and it upsets her. But other than that, no. We still, I mean, we’ve been together nearly 50 years
Quite a strong relationship then?

Ken’ So you know, we do share everything. it’s not a question of we don’t, all right might be a little secret keeping my health but other than that we’re not.

And the reason for that is so you won’t worry her?

Ken’ Yeah. Because she’s got
.. and did you
Ken.. enough of her own problems.

And did you feel that having to tell her about that, was that difficult knowing that you, she would get worried?

Ken’ Well it was, yes.

Wife’ I’m not butting in, when he come out of that hospital, that doctor’s and we had to go straight to [place name]
Ken’ Yeah.

Wife’ .. and I said, What is it And he said, Well he said, I’ve got to tell you and I just couldn’t, just couldn’t believe it./ I just not could believe it.

I mean, I was just wondering what that disbelief was? You know, was it that you thought it was very serious or

Wife’ I did, yeah. it’s no good saying, and I still think it is. You know, all right, people tells me not to worry but you do. You do worry. You know, you just can’t sit there saying, Oh, I’m not going to worry about him because you just, you know, I mean, when they, he had to go that Wednesday night and they kept him in, in hospital, you know, I was really out of my mind but well I had a friend and that he was marvellous, you know, and that, but as I say, I do worry about him, I really do.

My husband was absolutely fantastic from start to finish. And I don’t know really what would have happened if I didn’t have my husband here in all honesty because he was supportive. He was here for the, because he was allowed time off work to be with me. And that was very reassuring.

Did, would you say, did it affect your relationship in any sort of adverse way at all? Or has it all been quite positive in that sense? I mean, some people have said it brings them together more, some people have said it’s been really difficult and it’s caused us problems?

Well I, I think in view of the fact that [husband] had had cancer the year before sort of brought us together then I had a stroke, well I don’t think you can get any closer [laughs].

You know, we just, we, you know, we’re close because we’ve both had traumatic illnesses.

So I mean, we’ve had a few funny times on it when I sort of said to [husband] it’s all right for you, you know, you had your prostate removed. I’ve still got to take tablets for the rest of my life So we’ve had banters but it’s more bemusement than anything, you know.

And that’s helped us go through things. His experience of going through cancer, you know, and all of that helped me because it, we both had life-threatening illnesses.

He wrapped me in cotton wool and then he put bubble wrap round. When I first, you know, when it first happened, I, he wouldn’t allow me to do any housework. If I got up to make a cup of tea, I’ll go and make the tea. I’ll do this, and I’ll do that And eventually I had to sit him down and say, Stop. You can’t do this. I’ve got to do some things for myself Or I got sneaky and started doing things while he was out at work. You know, like getting the hoover out and thinking, I’ve still got to live

You know, I can’t just sit there, [husband] Oh sorry, and do nothing, you know.

I was just thinking about you, you know, you said your husband’s been, is ill as well at the moment and you’re obviously having to support him

Hmhm.

as well, how, how does that work, with the two of you having to sort prop each other up in certain ways? Is that difficult?

It is difficult, yes because obviously he has down days, I have down days and we, we kind of try to dress it up so that we don’t’ put stress on the other one. And sometimes I think we get extra stress because you know we try and not stress the other person.

You know my husband had bad day yesterday and then I spent the whole day saying , Are you ok, is there anything I can do for you. And if I’m having a bad day at the same time, I tend to think more on, I just won’t say anything

And then maybe in a couple of days’ time, it will make my day even worse because I’ve, I’ve kind of built up to having a bad day.

So it puts a bit of stress on the relationship in some ways?

It does, yes.

Yeah. Understandably. Yeah.

But, I mean, we’ve been together for 27 years so.

So you’ve got a lot of strong foundation?

.. we’ve got used to each other. Yes [laughs].

You’ve got that guilt that you’re carrying around because, as I said, I’m impinging so much on Shirley. She used to go out quite regularly and do various things. I mean, I don’t mean she was out all the time, she wasn’t. But she used to go to various inst, institutions and things and clubs. Yeah, not institutions, sorry, that was a wrong word, [laughs] clubs and, oh, the WI and things like that. And she has thankfully started to go again now we’ve got to the stage where I can be left for a little while. And she’s starting to get back into that.

And we have actually yes, there’s something else that has happened is that we’ve got a oh, I don’t know what you call it really, it’s difficult to know what it is. it’s a, a sort of help group who come out and are either going to come out and spend three hours with me here so that Shirley can go out if she wants to for three hours or go up the garden for three hours. Or maybe they’ll, we’ll go out somewhere and Shirely can be here on her own for three hours you know so that
So she can have a bit of a break?

..so that she can have a break, yeah.

And, I mean, is that feeling of not being left, is that a feeling that you don’t want to be left alone or is it, is there a sort of particular worry that if you’re left on your own something could happen?

That was how it started. It started off was, Oh God, she’s going out what happens, you know, what happens if.. But now it’s, it’s expanded from that and I’ve got back to the stage where as long as certain medication is in certain places then, you know.

We don’t do so badly, I don’t think now.

So overall it sounds like you have had to make quite a few adjustments
Oh yes.

..then
Yes.

..to your everyday, day-day life really?

Oh, very much so. Yeah. And as I say, I think it’s [ha] the adjustments have not just been mine. They’ve been a tremendous amount of adjustments for Shirley well, you know.

And, as I say, this is one of the things that you carry is this guilt that you’re, not spoiling her life but, well, adding more to the burden as it were.

And how have your colleagues reacted to your

Oh, being very kind and very generous and very concerned and lots of telephone calls and cards and very, very concerned and very supportive. Yeah, yeah.

I mean, one of the things some people say is that it helps you to know who your friends are?

It does, it does and it’s been stunning the number of people that have, that have been in touch. And when, when I first was off work I couldn’t get my fingers out of it, I just kept contacting people by emails and I wouldn’t let go. And I’ve one or two very strict messages from friends saying
Get off the internet!

Exactly [laughs] Yeah, clear off. And I did. And I’m glad I did.

I’ve got two grown up children who, who helped, but, yeah, it was diff, it was a disruption.

And how did it impact on the rest of the family? Do you
Well they were, they were upset obviously but they were all kind of mobile. I felt more sorry for Emma because she just kind of started a new job and she was going down to not far down to [town], you know, half an hour every morning on the train
Does she live here?

She lives here, yeah, both Anthony and Emma live here and she found it a bit of a strain I think but, you know, she used to, I’ll say grin and bear it really, [researcher’s name].

No, a lovely kid. In the end
Very supportive?

.. yes, very supportive. What I did is she unfortunately, various things she had to leave the job after six weeks, so she became my personal carer’ for a month while she found another job. And then she found another job very quickly and she was kind of off and running.

Did she get upset at all or how did she cope with it?

I think she coped very well with it. The person I’m not sure I’m just going back now to when I was in [name] ward when the three of them came to visit me for the first time after I’d been admitted, I think Anthony was. Now Anthony, the eldest, doesn’t show his emotions very much, he’s quite, completely different to Emma. Emma’s more like me, she’ll chat to anybody for want of a word. Anthony I think keeps it in himself

I think relationship-wise when you first meet somebody and say, Oh yeah, I had a stroke when I was 2 that’s kind of hard for somebody to get their head round and they kind of run away from it a bit, so
Has that happened?

Hmm.

Yeah. And does it make you feel upset talking about it to somebody else? It kind, knowing that that might be their reaction?

Yeah.

Yeah?

Because it doesn’t matter how much information I can give them, they’re still too scared if you like to take on the situation, so in comparison to how scared they feel to how I feel.

What about your family, your wider family, how did they react to your

They came into hospital to see me. Both my sisters are nurses. My one sister said to me, Oh it looks, oh I can still see the remnants of your stroke Which just made me want to embed my fist into her face.

And what was she meaning by that? What was she
My face was still, still dropping.

Right.

But none of my friends or my husband would say anything. So I was ignorant to the fact. Because I had a very slight limp when I get very tired and also I have a muscle spasm in my left leg for a long time
Right.

.. which has only just gone.

And did it just feel hurtful when, if somebody pointed those things out?

Unbelievably.

Yeah?

You know, Oh, you, I can still see the remnants of your stroke because your face, your mouth is down one side Well, I had no idea. I had no idea. Why tell me? I’m not going to look in the mirror. Which is then what I did was look in the mirror and I started, you know, smiling, is everything smiling, you know, correctly, and so on. So, yeah.

I think, I look OK, this is what used to really irritate me because people would look at me and say, Ah, you look so well, Claire And I’d think, Well, yes, maybe I do but then, you know, it’s not something outwardly that, you know, it’s like anything else, the unseen disability really, isn’t it?

When people if it doesn’t bleed it doesn’t hurt type of thing.

I know some people have said to me that, you know, people will say, How are you but actually they don’t really want to hear?

Yeah.

About that, and it’s, did you find that?

Oh I love, oh no, I love it when people say, How am I because I’ll tell them and then they wish they hadn’t asked.

I would say talk about it if you’ve got a neighbour or a friend or somebody that, you know, is quite happy to come and sit with you.

Try and talk, talk about how you’re feeling, you know. Maybe they won’t understand it but try and talk about it because if you hold it in I think it, it’s like a volcano, it will just erupt. If you’re on your own and you don’t talk about it, you go out on your own, you come back on your own, I think you need to talk to people and see people, which I, I don’t see enough people. Hm.

I will say there has been one positive thing that happened to me after the mini-stroke, when I came back in the ambulance a lady knocked on my door and she said, Ros, what’s happened And since that day, she’s been a friendly neighbour to me. So, yes.

So that could open up ..

It was
new avenues
.. a blessing in disguise.

Yeah.

And, yes, and she took me to the doctor and, and if I need anything big that I can’t have it, carry, she’ll take me in her little car and, yeah, yes. So out of that, out of my stroke
Some friendship?

.. I’ve made a friend. Yes, so that’s a good, that’s a good thing [laughs].

When I say to people, Oh, I’ve had a stroke Oh my God, you can move And, You’ve recovered really well

Do you think there’s an age association as well that people tend to associate it with older people?

Yes, I do. Yes, definitely. You know, because a lot of people have said to me, Oh you, but, you know, you’re, you’re really young to have stroke And I thought, Well, you know, children have strokes

it’s just one of those things, you know. If your body decides you’re going to have one then you’re going to have one.

I suppose what, one of the things that it makes me think about, you know, when you were talking about your own sort of self-identity is that you have to kind of then build that into your story about yourself, if you like, about how you talk to your, about yourself to other people?

Yeah.

And deal with their responses?

Absolutely.

Is that, do you find that quite difficult?

It is quite difficult and sometimes you just don’t bother telling people. And, you know, people that you don’t’ know very well will say, How are you and you, you tend to think, I’m fine thank you Yeah, everything going well Yeah, fine thank you I don’t, I don’t, I don’t really want to bother telling people, Well actually, no, I’ve been quite, you know, quite poorly really [laughs].

Do you find sometimes, I mean, quite often people ask you how you are but they’re not really
they’re not really interested.

.. wanting to hear the details [laughs]?

No, exactly, yeah, so yeah, all my good friends and that, you know, have been quite shocked. And, I mean, my husband was telling one of his friends and she turned round, when he said, Oh, Yvonne’s had a mini-stroke she was, Oh right, OK, whatever And then the next time he spoke to her, she said, Well what did it consist of And, and he told her and she said, Oh I didn’t realise you got symptoms like that

I thought it was just kind of like a headache

So, I mean, do you think that there’s a need for more general awareness?

I think there is.

Keep friends. Keep friends. Keep the channels of communication open with friends and family. If we can’t do it the way that we normally do it do it another way. I found talking on the phone very difficult. And I still do. Email. There’s Facebook. There’s Twitter. However old we are. There’s postcards. There’s letters. Meet up with people for a coffee. I’ve had to learn that I need to do that otherwise I become very isolated.

I’ve got to take a risk with people. I’ve got to take a risk they won’t understand and they’ll get offended. Or I’ll cry. Well I might cry, in fact it’s probably very likely I might cry, but that doesn’t matter, they’re my friends, they’re my family, they’ll understand.

And if they don’t, there’s nothing I can do about it. That’s their problem then and it’s not mine and I, yeah.