Diana - Interview 22
Age at interview: 77
Age at diagnosis: 72
Brief Outline: In 2003 Diana was diagnosed with severe osteoporosis of the spine. She paid herself to have the Forsteo (teriparatide) treatment that consists of daily subcutaneous injections for 18 months. Describes Forsteo as 'marvellous' Currently on Actonel once a week.
Background: Diana is retired, a widow and has two daughters. She walks everyday and once a week, she and a friend go with their local walking club for a longer stroll.
More about me...
Diana developed severe back pain while on holiday in Spain. She was admitted into hospital for tests. Two days later doctors informed her and her daughter that she had severe osteoporosis of the spine. Diana suffered from backaches for many, many years prior to her diagnosis but put it down to a slip disk or simply viral infections and didn’t seek medical advice.
Back in Britain, she consulted a private doctor that advised her to have a new osteoporosis treatment called Forsteo (teriparatide). This treatment consists of one daily subcutaneous injection for eighteen months. The consultant informed her that she wouldn’t be able to get this treatment under the NHS and that she would have to pay for it. Diana consulted with her daughters and decided to go ahead and have the treatment. In 2003 the cost for the Forsteo treatment was £5.500 and she paid for it by direct debit and in installments.
Diana says that one lady from the pharmaceutical company – probably a nurse - went to her house and showed her how to inject. To start with she was anxious about injecting and every evening during the first week, one of her daughters went to her house while she did her injection, just for support. After that she was all right with it and established a routine of time and place to do her injections.
At the end of her treatment she had a series of blood tests that indicated that she no longer has osteoporosis in her spine, but only in her hips. Diana is trilled with the outcome of her treatment and describes Forsteo as ‘marvelous’. Diana admits that financially it was difficult but says that her health is more important than money. Her current medication is Actonel and calcium tablets.
Nowadays, the effect of osteoporosis in her everyday life is minimal. She is able to do most things around the house, except gardening. She has good friends and together they go on holidays, walks and sightseeing. One thing that Diana doesn’t do anymore is to take holidays abroad because she can’t lift heavy things such as suitcases and she knows of no travel company that offers such a service.
Diana has blood tests now instead of DXA scans.
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Now did you have another scan after you finished the treatment?
Yes, yes I did. But after that they did tell me that I, to, they don’t advise the deep bone scan now. But they say they can tell from the blood, taking blood now. So they, the deep bone scan isn’t so necessary any more. So every year I go to my GP and have s-, blood taken once a year. And it takes a couple of weeks or so before the results come back. But I go and see her every so often. And she, she did say that the osteoporosis was out of the spine, you know. So that was excellent, you know, as far as I was concerned. I feel very fortunate, you know, to have um done what I’ve done so far.
Who gave you this information?
Yes, that was up at the hospital. Yes, because I did suggest, you know, saying, “Well, can I have a deep bone scan?” But then I was told, “Well, the blood will tell us as much as having a deep bone scan”.
Diana saw a private consultant that advised her to take teriparatide (Forsteo).
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Then from there I came back home. I went to my doctor’s and I decided, “I must get something sorted privately, because waiting for the National Health it’s going to take a while.” But when it all turns out it was fortunate I was in Majorca, because I had all, everything done over there, because it was private, you know. I was in hospital for two nights. I was on a drip and they gave me some medication. That was in [town]. I’ve still got the X-rays actually from there, which they gave me to bring back. Then when, I went to see a doctor in town and he suggested that I went on the Forsteo, you know. But he said, “The National Health doesn’t, won’t pay for it. You’ll have to pay privately.” Which was a struggle, but I managed. And after injecting myself for eighteen months I, it was absolutely marvelous really, you know. I mean I think, I don’t know whether it’s me or what it is, but it really has done the trick actually.
When you saw this private doctor, he explained why he was recommending these injections to you?
Yes, I think what it was, was because the, everything that come from Majorca, my osteoporosis was advanced and it was the quickest way to get some relief, you know, to help it. Actually the, the Forsteo takes the osteoporosis out of the spine. But it does not take it, if you’ve got it in the hips, it does not take it out of the hips or anywhere else, but it will take it out of the spine as long as you do the eighteen months’ course.
The Forseto, yes. Well, what happened, shall I tell you what happened?
A nurse, well, I don’t know if she was a nurse actually, but she knew what she was talking about. I think she just understood about the Forsteo, you know, she’d been trained to tell me. She came to the house and showed me how it was done exactly. And I said, “Oh” I said, “So will you be coming tomorrow to do it again?” “Oh, no” she said, “You’ll be doing it yourself” you know. Horror actually, [laugh] thinking, “Oh, gosh, you know, injecting, you know, myself.” Which I’d never done, you know, I’d ne-, and anyway that was it. My daughter actually came down, she works in [city] and she came home, came down every night for a week to be with me while I injected. And after that, it, there was no problem.
Yes, oh, yes, yes. I used, my friends and my family thought I was very brave to be doing what I was doing. But then they hadn’t suffered the pain I’d suffered. And I can’t describe the difference it made. And there’s literally no after, you don’t get any after-effects with injecting.
And I mean the point is that I think with something like osteoporosis, I was in an awful lot of pain when I got back. And I went to, you know, my daughters were with me, went to the GP and, because you burn, you burn up at the back. And I remember sitting on the seat waiting to go in to the, see my GP, and I thought, “Oh, my back’s on fire.” You know, it was so hot. I get none of that now. I mean those injections were actually fantastic, I mean it’s a struggle to have to pay to get them done, but it’s, you just think, “What price is health?” I mean it’s so much more important to be able to lead a normal life for that amount of money really.
Diana has tried reflexology and Indian head massage. She benefited from the reflexology but found...
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But now there’s occasions well, my daughter pays, that I go to reflexology and, which is great.
Yeah, you go to reflexology?
[laugh] Get spoiled. Yes, well, my daughter, for Christmas she, and she’s done it before, paid for me to go to reflexology out at, at [village], near [town]. And she comes and picks me up and takes me over there. And an Indian, and then, because my birthday is just after that, I have h-, Indian head massage as well. And, you know, you go in there and absolutely pampered, you know. And, oh, it is nice [laugh] I sort of lay there...
What do they do?
Well, when you go in, there, there’s soft music playing, there’s soft lights anyway. And then she says, “Oh, you know, oh, we’ll go into this room, you know.” And you go into the room and there’s the couch and then there’s a chair and a bowl of water, warm water. And I don’t know if there was rose petals in this time, but it doesn’t really matter. The time before there was rose petals in the water. Anyway you put your feet in and, and she, she leaves them in a minute or so and then she dries them. Then you get, and there’s low lights, you know, and very soft music, and then you lay on the couch. And, well, there again you see, I say to her, “No, I don’t want to lay flat.” So this time, that’s right, because she said, “Some people like to talk and some don’t, you know.” And so I was sat up quite a bit this time. Which was great, you know. And we were talking, you know, nattering away, and she was telling me different things about your feet, you know. And, and funnily enough she said, “Oh, have you had some sinus [um]?” I said, “Well, not a lot, not really.” But she’ll say things, you know, which would…. And I think it’s, well, so [daughter] said that she’s the owner of, I had the senior, no, not the se-, the, I had one above that, oh, I’ve forgotten now what, what she was called. But anyway I think she owns the place anyway. But she’s really, really nice. And her voice is so nice as well [laugh] and it’s so relaxing. But it really is a treat there. Actually I, I could, there is one advertised in our local that, reflexology and that. And I think that is quite nice, you know, to have something like that, relax with that. Because the Indian head massage, they really sort of m-, I’m not that particularly struck on the Indian head massage. That, it’s all right, but I think it, you know, it can get the muscles of your neck a bit, you know, when they’re sort of massaging. But then really I shouldn’t complain because it’s all been paid for me [laugh].
Diana is a member of the local walkers club and once a week she goes with a friend for an hour...
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And also that’s another thing, I walk, I walk a lot. Because that is important as far as I’m concerned, as far as osteoporosis is concerned. I try and walk every day, even if it’s like just ten minutes down the village, or I go the long way round so that it gives me that extra walk. And my friend and me, we joined the [name] Walkers and that’s an hour’s, we, you know, there’s so many different walks around that you can do, but that hour’s walk is quite enough at my age and my friend’s age as well. She’s, she hasn’t got osteoporosis but she’s still, you know, we’re still that much older.
How, how often do you have this hour walk?
The hour, once a week.
Once a week?
The hour, on a Tuesday, the hour walk, yes. But, like I say, I walk most days, because to me that is more important. You can read all the time or hear all the time that walking is the best thing. I mean I’d love to garden and that. But I can’t because I can’t get down, you know, to, it, I don’t think it’s so much osteoporosis, I think it’s your age. You know, you can’t put everything on to osteoporosis. When you are getting to my age you, you’ve got to.
You are 76?
Oh, sorry, no, 77. I was thinking of my friend and she’s 7-, she’s 79 this next birthday. No, 77, sorry [laugh]. Gosh, not many people would make themselves older than what they actually are, do they?
No, that’s for sure.
Diana said that most of her information comes from the NOS magazine but sometimes she is too busy...
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So the last magazine I had, I read about it. And there is an injection now, isn’t there, come out? A yearly injection. Which, there again, you don’t know anything about it. I mean it doesn’t come to the fore. Nobody, doctors don’t say, “Oh, you’ll be able to have the injection now” or anything like that. You just don’t hear about it, you know. But it was in the, it was in the magazine that it was they were quite excited in fact about it coming out to help people.
So most of, most of the information, you, you have got it from the National Osteoporosis Society magazine?
Yes, that’s right I, I’ve read about NICE, you know, and I see you know. You know, you read what they’re trying to do and so on and so forth. Some months I haven’t, fortunately I’m able to lead, you know, an active life, and there’s times that I haven’t had time to read the magazine. Which isn’t a bad thing, because if you can get out and about that’s more important than having to sit.
Diana avoids air travel and holidays that would involve her lifting her luggage.
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I didn’t say about going on holiday with friends, but I mean, and my, going down to Cornwall.
You can add that.
But I do go down, my family take me down to see my sister in Cornwall. Usually we go on a Friday and come back on a Sunday, or on a Thursday and come back on a Sunday. It all depends. Which is rather nice. And my sister comes up to see me occasionally. So that’s another nice thing. And my friend, my friends, we do go on holiday together. We usually go on a coach trip, you know, where as far as luggage is concerned, we just take it to where the coach is picking us up and we don’t see our luggage again, which is really a good thing, until it’s outside our door at the hotel we’re staying at. Which is, well, this is what makes a holiday, knowing that you haven’t got any lifting or struggling to do with the cases.
So you go on coach trips abroad?
No, no. We have, you could do, no, we haven’t, no. Because if you go on a coach trip abroad, you’ve, you’ve really got to, I think you’ve more or less got to get yourself, I used to belong, when we went to Portugal and Tenerife, to Saga. But even at the airport, you’ve still got to lift a case on to, having it weighed. I mean that, some people think, “Well, that’s nothing.” But it is. It’s a lot when you can’t lift, you know. But Saga, then they meet you at the end of the journey and put your cases in the coach and then you don’t see them again until the hotel. But it’s this airport business that is the problem. Because you’ve got to get a taxi to the airport, and then you’ve got to go and get a trolley and get the case on to the trolley. Which years ago was absolutely nothing, you know. But I’m afraid now it’s just too much. I mean I could really hurt myself by doing that and ruin a holiday. Well, I’m not prepared to do that, you know. But I think you know your liabilities. You know what you can do and can’t do. I think it’s nature’s way of telling you what you can and can’t do, you know. I do feel that.
So would you welcome tour operatours would offer these facilities on this side if you decide to travel abroad to help you with the luggage and basically put it, make sure that your luggage is on the plane?
Yes, there is, no, Saga doesn’t do that. Actually you can, in fact you can, you can ask for assistance. But if you ask for assistance they get you in a wheelchair and, because actually we did, years ago this did happen. My, the friend that’s the invalid that, she doesn’t get out at all now, she, we asked for assistance for her. So they called her name out when we got to the, where, just before the plane, you could see the plane, before you go onto the tarmac, and they called her name out. And she was, they put her on one of these little things that run around, you know, these little trolley things, motorised things. And she said, “Well, I’m not going without my friends.” So we were able to get on as well. But to get on the plane, they put her on first and we just walked up the steps obviously. But that is the assistance that you can ask. But quite honestly I really don’t want to be sat and put into a chair and wheeled around.
Dianas GP diagnosed a slipped disk and advised her to rest and take painkillers, and so when she...
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With all these back problems that you have had over the years, did you go to the doctor’s?
No, I didn’t, for the simple reason that I thought, “Well, what can they do?” I, I know what happened, yes, I’m just thinking about it again. The very first time I had was, [daughter] now 53, she was about 4, so literally that would be about 1960, about roughly 1960. And we’d just moved into this house, we hadn’t been in there that long. And I went upstairs and the bathroom was in front, and I went to go into the bathroom and I must have gone like that, twisted a bit. And that was the very first time ever. And I went on the floor. My husband was downstairs, we had a downstairs, there was a downstairs loo as well. And he was banging the toilet roll holder, banging. So the noise, you know, he couldn’t hear. And I screamed out because I’d never experienced anything like it before. And he heard, eventually he heard and come tearing up the stairs. And it was on a Sunday, he wasn’t at work, you know, and it was definitely, I’m sure it was either a Saturday or a Sunday. And I thought I was paralysed. I just couldn’t get up. Anyway he managed to get me up and get me on to the bed, and he rang the doctor. And the doctor came up and he said, “Oh” he said, “a slipped disc, you know, a s-, it’s definitely a slipped disc” he said, “and the only thing you can do is to lay in bed, you know, and have painkillers, you know.” And so after that when my back did go I thought, “Well, that’s the only thing I can do then. I’m not going to be able to do anything. You know, I’ll just have to lay in bed and take pain-.” And that’s where all, I think it all stemmed from. So I didn’t used to go to the doctor’s.
Do you remember how old were you at the time?
Yes, I can work it out. I was 25 when I had [daughter], so 25 when I had [daughter] and she was about 4. About 29, roughly, you know, 29, 28 to 30 sort of thing, about that sort of age, yes. And that was the first time that, with the exception of, when I was 17 I broke my wrist, you know, about that.
So from the age of 29 you started having these problems?
Oh, yes, yes.
Diana has an active social life with her friends and her days are always busy.
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That's me really. I can’t be bored and I can’t sit down. I would, I suppose if I was on my own all the time and that and no friends and no activity, you could get depression quite quickly. Because I did have, after my daughter I had depression, but, post-natal depression, but it wasn’t called that then. And the way they treated you then, [laugh] I wouldn’t like anybody to be treated like it today, you know. That was 53, -2, -2 years ago, you know. Well, she is 52 now. So it was totally different in those days. It wasn’t even recognised, post-natal depression.
And that’s why I said, “I’ll never get to that stage again” you know, this depression sort of thing. Which, this is why I keep going [laugh].
And you have your friend around here?
Yes, she lives about four doors down, yes, yes.
And she’s the friend that you do … go out with?
We do, yes, that’s right. We, like we went to [town]. Her son lives in the village, just out- -side. But she’s just got one, well, she did lose a son. He was 27, he, he had a tumour, brain tumour, you know. But that was a long time ago. And, but, yes, we belong to the [club’s name] Ladies that meet once a month and we do the raffle, [friend] and me do the raffle for that, you know, and afterwards we have a cup of tea and biscuit. You know, that, it’s all, that’s like a Wednesday. And sort of we, no sooner it’s Monday than it’s Monday again. Because weekends, often on a Saturday, well, I’ve got people coming this week, but normally on a Saturday we’ll go into [town] or somewhere like that and have a bite to eat. But then if we don’t have a bite to eat, just have a coffee, then we’ll go out Sunday lunchtime and have something to eat, you know. And that, because everybody’s doing their own thing at weekends, aren’t they? Like hol-, at Christmas I go, I’ve been going over to my daughter over in [village] you know, she’s, at Christmas time. But, and, and the last, what I did find, and it’s me personally I think this is, that I was going on holiday, we were going away the end of June last year and, to Scotland. And I had a sickness or, or funny turn, you know. Sort of, I don’t know, I was so tired and really tired and I don’t know what happened. But anyway I couldn’t go. And f-, another friend filled in, so that was no problem. And come New Year’s Eve and we were going to this hotel for New Year, and I got my case packed, bag packed, everything packed, and I was just absolutely worn out. And I don’t know why, the reason why, but then I had all this feeling sick and so on and so forth. So anyway I got the insurance back for that, because the doctor, although I had to pay for it, GP, they gave me a medical certificate for it, because they obviously knew I wasn’t, you know, faking or anything. But I was so upset because I couldn’t go. But I don’t know the reason why. Anyway I’ve booked for June, the end of June, and I’ve done the booking and that for my friend and me. We’re going with... So keep my fingers crossed that nothing goes wrong this time. But I think it’s just the way you, we are as individuals, aren’t we? We’re all different.
And you go with your friends on holiday in the summer?
Yes, yes, yes. When my husband first died, then I went with one daughter to, my sister-in-law, a friend of hers had got a villa. That was in Spain, and we went there for a few days. But with my family going away, I, they take me down to my sister in Cornwall like, but we just go for weekends. Because my daughter,