Ken - Interview 39

Age at interview: 68

Age at diagnosis: 68

Brief Outline: Ken went to see his GP because he was experiencing problems with his eyesight when he woke up in the mornings. He had put off going to the doctor for some time as he thought it was probably something trivial but he was sent for tests which confirmed that he had a series of TIA's. Since then he has also discovered that he has a heart condition which is now being treated.

Background: Ken has been married for 50 years and cares for his wife who is disabled. He is a retired shop manager. Ethnic background; White British.

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Ken was experiencing minor visual disturbances in the mornings, but didn’t think it was serious and also didn’t want to worry his wife who also has health problems of her own. He went to see his GP eventually, who suspected it was caused by TIA’s and immediately put him on aspirin. He was sent to hospital for tests including an MRI scan which confirmed that he had in fact experienced a series of small TIA’s. Tests also revealed that Ken has an irregular heartbeat and he is now receiving treatment for his heart condition. Being diagnosed with TIA’s and a heart condition has been a big shock for Ken and he has found it difficult to adjust, especially in terms of having to be less active as he is a keen allotment gardener. In the past he spent a large proportion of his time out on the allotments but now finds he gets tired and has to take things more slowly, however over time he has gradually discovered that he can continue to garden, but just needs to pace himself and recognise if he is doing too much. Ken’s wife has also found it to be a worrying time because she relies on Ken who is not just her husband but also her carer. Because of this Ken sometimes feels he needs to keep his feelings about his health problems to himself. Over the past year since the diagnosis he has felt quite low at times, but is taking a positive attitude towards his recovery and feels that it is important to keep going and not dwell on anxieties and worries.

Ken felt shocked and upset at first that this had happened to him because up until then he'd been a very fit man

Well it just shook me to the ground, really shook me to the ground. And of course from that I’ve had heart problems. And that, that’s how it’s all started. And all right this is very disappointing, I’m not used to being ill. I’m quite a fit man. And then now to be lumbered with this for the rest of my life at sixty eight, well [laughs] it’s no joke. That’s it really.

You feel very low. Because you, you know, you just can’t do what you want to do You sort of put on a limb if you like, until you’ve had the full results it, you, you don’t know where you’re going, if you know what I mean.

 

But I feel confident now, you know [sighs]. I don’t, it, I never thought I would have anything like this in the first place. So it’s a shock to the system, but I’m coming back and I’m going to fight it and I should be on top in a few more months.

Ken had woken on several mornings with blurred eyesight but thought nothing of it to begin with.

 

I was having these, when I got up in the mornings I had a blank, my eyesight wasn’t clear. And that lasted about half an hour. I’ve had nine of these all told and when I went, finally went, I thought, “Oh well, we’ll check it out just to be on the safe side.

 

It’s just always in my eyesight and first thing in the morning, as I say, it lasts about half an hour and then it would go.

 

And so before you actually went to the doctor, I mean, maybe the first couple of times it happened, what did you think it might be? Did you not really …?

 

I didn’t take any notice.

 

Really?

 

Just ignored, ignored it, let’s put it that way.

 

Ken cares for his disabled wife and didn't want to worry her.

 

I never said anything to my wife. I’m a very quiet person. I keep things to myself even if I’ve got a problem. I’d, you know, I’d try and get… because she’s not a well person. So I try and keep things to myself. But this time I thought not knowing was a bit too much to cope and I thought, “Well we’ll check it out, perhaps she’ll send me for a scan”. And that was it.

 

Ken is on warfarin and has to have blood tests every week to monitor how things are going. Once things are felt to be more stable he will still have to go every three months

I’ve had more blood tests [laugh]s heart checks the last three months than I’ve had in all my life.

with this warfarin test the palaver, I never thought I’d be doing this for the rest of my life.

 

What was the testing for? What did that involve?

 

Well, yeah, first of all you had a blood test. Then you go and see a, a nurse and she takes all the details and she tells you all about it. And you now once a week I’ve been going to the hospital to have a blood test to see whether my blood clots are high or low, whether the tablets are going to change. You have to write everything down in the book, in the piece of paper. You have to tell them the change of everything, you know, change the medication, whether you bruise badly after the injection and things like that. It’s just so you’ve got that for the rest of your life. And then she said, “All right, you can work up to one in three months.” But she said there’s not many people that get the three months. Eight weeks between one blood test to the next.

 

So how do you feel about the prospect of having to keep going through that all the time?

 

Not very happy about it, but if it means it’s going to keep me going, well, I’ve got to do it, you know. Don’t like it, but got to do it.

Ken was put on aspirin initially but is now replacing it with warfarin which the doctors feel will be more suitable for his condition

Did he immediately say it was, he thought that it was TIAs?

 

Yeah. And put me straight on aspirin which was 300 mgs. I was on that for six weeks, [noise] and then reduced the dosage. And now as I say I’m in the hospital now for warfarin to come off the aspirin.

 

And why did you have to come off the aspirin then was it, was it disagreeing with you?

 

Well the… it’s… no.

 

Right.

 

They feel that warfarin is going to be better for me.

 

Right.

 

And stop the blood clots which I’ve got in the heart, top part of the heart, they say.

Ken has felt depressed since his TIA but doesn't want to take medication for it

 

In terms of kind of feeling a bit low about things have you seen the doctor about that? Have you spoken to any of the medical professionals about that?

 

No. No.

 

Is that not something that you would go down that road?

 

No.

 

Is that something you’d keep …

 

Because I don’t …

 

... with, is that a …

 

I don’t …

 

... macho thing again?

 

I keep that to myself, I don’t want know what they call it? Pick me ups or anything like that.

 

Ken now has to have regular checks to monitor his blood and his medication is sometimes adjusted afterwards

First of all you had a blood test. Then you go and see a, a nurse and she takes all the details and she tells you all about it. And you now once a week I’ve been going to the hospital to have a blood test to see whether my blood clots are high or low, whether the tablets are going to change. You have to write everything down in the book, in the piece of paper. You have to tell them the change of everything, you know, change the medication, whether you bruise badly after the injection and things like that. It’s just so you’ve got that for the rest of your life. And then she said, “All right, you can work up to one in three months.” But she said there’s not many people that get the three months. Eight weeks between one blood test to the next.

 

So how do you feel about the prospect of having to keep going through that all the time?

 

Not very happy about it, but if it means it’s going to keep me going, well, I’ve got to do it, you know. Don’t like it, but got to do it.

Interview 39: Ken would like to be monitored more regularly so that he can be sure things are okay

 

I’d like to see more follow ups after you’ve....

 

...had the initial check. Because, as I say, I’ve had nothing from this from then to now and just to be reassured, you know. I don’t know how quickly things can, well, what I had, came off very quickly and went very quickly but [sighs] I don’t’ know if you, these scans can show more or not, I don’t know, if you had a check up every so often, especially when people have had these sort of problems.

 

So is there a slight feeling that you’ve been left now that it’s all happened …

 

Yeah.

 

.. and you’ve got medicated …

 

Yeah, yeah. That’s the thing.

 

And you’d rather have being monitored a little bit more closely?

 

Yeah.

 

For now?

 

Well, from, say for the first year, six months or a year, you know, so see whether there’s a problem there and be in, you know, be dealt with.

 

Ken would prefer to see the same GP each time he visits the surgery because he thinks it's important that they know a bit about him and his medical history

It’s a surgery of seven doctors, two nurses and they do a load of private work as well. So, you know, when you phone up you don’t see the same doctor. But I am now find that I can turn round and say, “I want to see X doctor.” And if she’s not there I won’t make the appointment.

 

And that, as I say, manage now to see this one particular doctor and I feel that I’m getting somewhere, you know.

 

So do you feel that if you see that same person each time you’ve got some continuity and she knows what’s happening …?

 

Yeah.

 

… with you…

 

Yeah.

 

...and it’s more, gives you more confidence?

 

Yeah. Definitely. Because if you go and see a doctor, a different doctor every time, all she’s going by is what’s on her screen, she doesn’t know you, so she, you know, you’re a complete stranger to her. If, but if you’ve got someone on a regular basis, they get to know you, your ins and outs, and, all right I know she got other patients but there’s still that patient relationship.

'It's a macho thing.' Ken has to leave the heavy work on the allotment to other people and he feels embarrassed

It really is hard. Especially when I’ve got a friend that lives with us, I’m in partnership with another friend who she had the allotments first. And I used to help her and then I, we had, she had two plots and we took on another two. So, you know, and I always used to be all the heavy work and now I have to sit back and let, well not sit back but ease back and they do all the hard work I’m doing the light work. And it’s, well embarrassing I suppose it’s a macho thing, I suppose. And well I just have to accept it at the moment but I’m, I’m sure it’s not going to be for long [laughs] I’m sure of that.

 

And I mean, have you actually checked out what you can, what you are and not allowed to do? Or is it just that you go, go on your gut instinct about how, what feels OK to be doing?

 

I do, well when it first started I was told to, I couldn’t do my allotment. But I did, when I saw the consultant he said to me “Can I have a look at your belt size?” I said, “Yes.” And he said, “Oh, you’ve put a lot of weight on.” Which I did because I weren’t doing exercise. And he said, “I think you’d better go back to your allotment.” And from there I just do what I can and I sit down when I feel out of breath I sit down, rest for a quarter of an hour and then go back to it. Another bit, sit down. And that’s what, that’s what it is all the time.

 

But it sounds like you’ve kind of reached a bit of a compromise with yourself because if you weren’t doing it at all…

 

Oh yeah.

 

.. now at least you’re doing some.

 

Oh, I couldn’t stay indoors. I’m, my wife will tell I’m out - nine o’clock in the morning and I’d, in the summer and I’m not home till about half past eight at night. Now I’m …

 

So that’s been quite a big change in your life really …

 

Yeah. Definitely

 

…at this, with this …

 

And now I’m home three o’clock now. Because I, I just haven’t got the energy to do it, you know. I do as much as I can when I’m there within breaks. And then by about two o’clock, half two I feel I’ve had enough and I come home.

Ken and his wife have been married for 50 years and are very close. Ken is his wife's carer as she has health problems of her own and so it was a worrying time for them both

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.