Sarah - Interview 27

Age at interview: 61

Age at diagnosis: 61

Brief Outline:

In 2002 Sarah took part in a clinical trial were she was first diagnosed with osteoporosis. It seems that her diagnosis wasn't sent to her GP. In 2008 she fell and hurt her back and her GP sent her for an x-ray and it was then that her condition was officially diagnosed. Current treatment' alendronic acid once weekly and calcium tablets.

Background:

Retired NHS ward clerk, married. Sarah had an early menopause at the age of forty-two and a hysterectomy. Nationality/ethnic background: white British

More about me...

In 2002 Sarah was fifty-five years old when she volunteered to take part in a clinical trial for a new drug for osteoporosis. The ad asked for ladies who had had fractures in their middle age, and who would like to be tested for osteoporosis. Sarah had had several wrist fractures and since her hysterectomy at the age of forty-two had been taking hormone replacement therapy (HRT).

 

At the clinical trial Sarah was given a bone density scan and discovered that she has osteoporosis. Sarah was told about her diagnosis and shown that it was in her spine but no further information in the form of leaflet or other literature was made available to her. She was told that her GP would be informed. Sarah says that she didn’t take in what the lady told her and assumed that if osteoporosis was something that needed medical attention, her GP would contact her. Apparently her diagnosis wasnt sent to her GP despite assurances to the contrary. Sarah didn’t know anything about osteoporosis and wasn’t aware that she had been diagnosed with a chronic condition.

 

The clinical trial was conducted by a medical research team based at a hospital on behalf of a drug company. Everyday she had to have a subcutaneous injection in her stomach and keep the medication in the fridge. The trail was to last two years but by the tenth month Sarah withdrew from the study. She was given another bone density scan and told that she had been taking the drug rather than the placebo. She was not informed about the results of her second DXA scan.

 

In late 2007 Sarah had another fall and landed on her back but weeks after the accident she was still experiencing pain. She went to see her GP and he sent her to have an x-ray. It was at that point, in January 2008 that she was ‘officially’ diagnosed with having osteoporosis. Her GP prescribed alendronic acid once weekly and calcium tablets. 

 

Sarah told her GP about her participation in the clinical trial back in 2002 and asked whether they have contacted him then. Her GP couldn’t find any letter about it. Sarah doesn’t know whether her original diagnosis was sent or whether it was lost or misplaced. The fact is she feels ‘bitter’ about having lost six years of treatment. She sees herself as an easy-going person who has never complained officially about it but feels that she has been sidelined. She said, “I feel that perhaps something could have helped me in the past, to strengthen my bones and I wouldn’t have gone through all this pain”.

 

By January 2008 Sarah has had several fractures to her wrist, ribs and in her spine. She has been having physiotherapy and hydrotherapy which she loves. She continues having back pain but not as bad as before and says that her main limitation is using public transport because the seats are too hard for her back or because she can’t stand for long periods of time. Carrying her shopping bags is also a problem. Walking is all right and she and her husband do go for walks everyday. After her retirement she continued working part-time but because of her back pain Sarah decided to stop.

Sarah had several years delay before she started taking medication because during a clinical trial her diagnosis was not sent to her GP.

I saw an advertisement for ladies who had had falls, fractures in their middle age, and would they like to be tested for osteoporosis? So I went along, had a test, had a DXA scan and discovered that I had osteoporosis. Which was a bit of a surprise to me. It was the first time I knew it. But I had had several fractures in my wrists as I was fall, falling over. I’m a bit prone to falling over. And I did a trial. That was when I was 55. So I’ve had it now six years.

 

Do you remember if at the time they told you that they would send the results to your GP?

 

Yes, they did tell me and, unless my GP didn’t read through everything. That’s why I d-, I went for a few years, that gap with not having any treatment whatsoever.

 

But this lady who, in 2002 when you took part in this clinical trial, did this lady explain to you about osteoporosis and what you are supposed to do in terms of medication?

 

No she didn’t. She said it’s just, it’s strictly a trial and they weren’t there to offer me any help really. No explanation. Just to help them in, in their trial. Which is a bit mean really, isn’t it? She said, “If we...” I do remember her saying though, “If you have got any trouble, if you have got trouble, we will contact your GP.” But I think they slightly forgot, yes. Perhaps they did with other people and I was just unlucky.

 

Did you know that, back when you took part in this clinical trial in 2002, that it was something that you will have for life?

 

Just didn’t...Osteoporosis. I must have been stupid. It didn’t occur to me that it was that serious, because nobody contacted me. And you sort of have faith in your doctor that if there is something wrong they are going to call you and tell you. But perhaps as they hadn’t invented the acid before, they hadn’t got anything to actually give me apart from the vitamin D tablets. 

Sarah enjoyed hydrotherapy. After her last physiotherapy session the back of her hand has been numb.

I have been having physiotherapy. And I was doing hydrotherapy, but of course you can only have so many sessions of hydrotherapy in the hospital. I had four sessions. That, it was lovely because, you know, just feel the water and no pressure on you. Great fun that was. And physio, oh, yes, he, one of, the last session I had I was on my stomach and he was really trying to get deeply into the root of where the fracture was. And I’ve ended up, well, our GP’s a bit suspicious, but the back of my hand here is numb and it still is. And that’s, you know, about three weeks now. And our GP thinks there’s a connection. But I haven’t seen my physio, he’s been on holiday, to ask him if there’s anything he did there that possibly could have affected my hand. I’m a bit suspicious. It was just suddenly after, the day after my last session, this numbness.

 

So will you go back to physiotherapy?

 

Yes, next week I’ve got an appointment. He’s just back from his holiday. I’ll ask him to explain what he did to me. That’s another time I had tears down my, streaming down my face, because he was going so deep, really pressing into my spine. And I, he asked me how I was and I said, “It’s just this side of bearable.” And he said, “Well, so long as it’s this side and not the other side.” But I really was crying. I don’t know if I’m a wimp or what.

 

Have you found that it’s helping?

 

I don’t know if it’s just coincidence, it’s, because it’s quite a while now anyway, it’s getting better. But the, it couldn’t have an ordin-, the GP said I couldn’t go to the physio at the GP surgery because he’s not used to fractures of the spine. You’ve got to be very careful. So at least I know I’m in, with the right people. The hydrotherapy really helped. Beautiful. Even if it’s just psychologically, you come out feeling gorgeous because you’ve had half an hour of, or, no, an hour of just being able to float and not have problems with your back.

 

So that’s nice.

 

Yes, I wish I could carry on with it.

 

What has he said, the physiotherapist - in terms of your treatment and what you’re aiming to?

 

Well, I’m trying to, I’m supposed to be, but not, because I’m very naughty about, I’m lazy about exercises, I’m supposed to be having, doing half an hour a day. I can do 15 minutes in the morning, 15 minutes in the evening. With me it’s more like 15 seconds because I’m too lazy. And I have, I’m supposed to twist myself like that, as far as I can like that. I’m supposed to actually have a rod between me, or something like that between to get in the right position. I’ve tried a rod but it’s too painful. But he said I could use a cushion and just keep doing that. Or there’s one on the floor and I look very inelegant. But that’s another one. And just several things. And I must try, I must be better at this, because he said it’s a lifelong thing as well to keep doing exercises. But I just, I’ve always been bad at doing it [showing some exercises].

 

You haven’t been doing them?

 

Well, when I remember and if there’s some music on, on the radio that’s rather nice, I won’t leave it go, I’ll just do exercises whilst the music is on. But that’s as long as the music lasts, two minutes. I won’

Sarah finds it very uncomfortable to travel on some trains.

I can say about the travelling. I find it very difficult now to travel on the trains because the seats are very plastic, you know, plastic support with a thin bit of material, and as the train’s going, going back into the seat behind me. By the time I get to my daughter’s, which is 25 minutes’ journey, that’s all it is, I’m nearly bent over with pain. And yet last year I managed to go to the south of France on a French train and Eurostar, nice and comfortable like armchairs, so I was able to sink back. So thank you South-West trains for making my 25-minute journey agony.

 

And when I first, well, a month after I’d had the last accident I attempted to go to my daughter’s, and she gave me a candle to carry, to come back with. And I was weighing it in my hand, I couldn’t carry it to the station, just the weight of that, because I could feel it pulling. And even now, so all those months later, as I’m sitting here I can feel it between, across my back. And I have to keep readjusting myself. I must look as though I’ve got ants in my pants, people who don’t know what the trouble is.

 

What are your problems now, what are your limitations?

 

Well, I’d say travelling.

 

Travelling?

 

On South-West, as long as it’s like an armchair I’m okay, but, as I say, South Western trains are really bad. They, they have got some padding, but it’s so thin and I find my spine being thrust into the padding, not into the padding, into the plastic very uncomfortable. And I get to the end of the journey just bent over. And when I first did it, I was on a train, I couldn’t get a seat and I was standing there looking really pathetic. I thought, “Surely somebody’s going to offer me a seat.” But nobody did. And I was, “Oh” I was holding on to my spine. I phoned my husband on the mobile and I said, “I can’t get a seat and I’m in agony.” And I thought, “Perhaps somebody will hear me.” But they didn’t. I’m just too trusting of human nature.

 

So traveling in public transport is a problem.

 

It is a problem, especially if you have to stand up because of course it jolts and stops. And it’s a horrible place to have it. 

Sarah thinks that it is her lack of exercise rather than her diet that has contributed to her weight gain.

I’m almost vegetarian. I will eat like a tiny bit of chicken because I know that I ought to but I do not enjoy it. I eat quite a few pulses. And I, I like Mediterranean food, so I cook a lot of things like aubergine and other pulses and fish and this and that. But that’s why I can’t understand why I’m putting on weight, because I don’t eat chips, I don’t fry anything. But I do have olive oil on things. But then that’s helpful.

 

Healthy.

 

Yes, I know. So, I don’t suppose I have enough calcium apart from the tablets.

 

You don’t eat cheese.

 

I eat it a bit, but not too much because they say that’s bad for you. So what are you supposed to do?

 

High cholesterol.

 

Yes, that’s the problem, my cholesterol.

 

Do you eat yogurt?

 

Not enough. We do get a lot of plain yogurt, Greek yogurt. And I’ve started making my own yogurt. Which is quite hit or miss. But supposedly it’s, it’s a good way of doing it, cheap, economical. But mine always ends up, I think you have, to appreciate it you have to have made it yourself so you know what’s got in it because otherwise you go “Ugh, what’s that?”

 

Have you made any changes to your diet since you were diagnosed?

 

No I haven’t made any changes.

 

Have you talked to or has your doctor talked to you about losing weight?

 

Oh, I’ve been to a dietician. I’ve gone, yes.

 

He sent you to a dietician?

 

Oh, no, it wasn’t. That was my cholesterol problem. That’s why I went to the dietician, to try and cut my cholesterol down. But I don’t, you know, the cake, I’ll have a slice of cake out of a whole cake. I do enjoy that but I don’t go mad. And I have a slice of chocolate, perhaps on, maybe on the same day. After that it’s, I eat loads of vegetables. And spinach because I know it’s good for me. I like the spinach. I do Mediterranean cooking because I used to be married to a Greek man and I learnt a lot of Greek food. And I do love it still. So I’ll continue cooking like that. So at least that’s one good thing he did for me, got me into this kind of cooking. Yummy. That’s very healthy. So I will put it down to, my tummy, as lack of exercise. That’s all I can think of. I don’t think it’s my diet.

 

But you have put on weight now because you have had that break? That fracture two years ago and then another one?

 

Yes, I wasn’t able to, and I’m not working. Because when I was at work I was up and down all the time answering the phone, dashing round to get somebody, coming back. And it’s amazing what you wear off in the course of a day. And I’d walk as fast as I could to the hospital when I was working and walk as fast as I could coming back. So that was a good bit of exercise as well. I was a bit slower coming home than going to work in the mornings, I must say. Didn’t have quite the same energy. But I must be missing that a lot. But I try to do, when I’m doing the housework I’m trying to think, “Oh, that’s a, that’s a few calories off, doing this and that.” Using it as an exercise excuse.

 

So would you say that sort of you have put on weight within the last two years or so?

Yes, I have. Because clothes that I had two years ago I can’t wear now. I’ve gone up to size 18. Bit depressing.

No, I haven’t made any changes.

Sarah feels bitter that she has lost six years of treatment after the results of her DXA scan were misplaced.

I saw an advertisement for ladies who had had falls, fractures in their middle age, and would they like to be tested for osteoporosis? So I went along, had a test, had a DXA scan and discovered that I had osteoporosis. Which was a bit of a surprise to me. It was the first time I knew it. But I had had several fractures in my wrists as I was fall, falling over. I’m a bit prone to falling over. And I did a trial. That was when I was 55. So I’ve had it now six years.

 

And I didn’t, after the test, nobody told my GP. So I was a bit unfortunate. I still kept falling over and having more accidents, until last year I fell off a ladder. And I was in such agony I thought I was dying. I had it right across my spine, between my shoulder blades. I went to hospital in a taxi and I was crying all the way there with the taxi going over bumps. I just felt like a real old lady. When I got to the hospital, the doctor checked my, just checked my chest and said he couldn’t hear any crackling going on. He didn’t think I had anything fractured. But I was sure I had because I was, it took me months and months to recover from it, with no treatment whatsoever. They didn’t tell my doctor. And then this January, that was just over a year a-, afterwards, I then managed to fall out of bed. I woke up feeling a bit of a, dazed, to turn the alarm clock off, and I fell straight onto where I’d fallen before. I had to go to the doctor this time because I, it was exactly the same feeling with the pain, absolute agony. And the GP diagnosed it then. I had osteoporosis and fractured two of my spine. Which I’d done before. I’d, I just had no idea I’d fractured it, not officially anyway

 

What I’m trying to understand is whether they told you that they were going to pass the information to your GP.

 

They did, yes, they did say they were going to. And when I asked, I went to the GP about some, I can’t remember, probably the first fall, I can’t remember now, and asked if she’d ever heard from them, she, she looked through her papers and she said, “No, nothing here.” And I wasn’t able to tell her what I’d been taking or what, what on earth it was about, because I didn’t have any details.

 

How do you feel about that?

 

I’d, I feel a bit bitter. Because I’m very easy-going and I’d never complain officially. But I mean inside I do feel that I’ve been sidelined. Somebody’s got it in for me. No, it’s... I feel that perhaps something could have helped me in the past and I wouldn’t have had to have, you know, to strengthen my bones, and I wouldn’t have gone through it, all this pain.

 

 

Sarah needs a comfy chair to sit in when she is at social activities otherwise she could not sit still for very long.

Has it affected your social life?

 

I have, well, I have to think twice about where I’m going now. We don’t tend to go out very often. I wouldn’t attempt the cinema, not unless they’ve really improved the, the seats. They probably have since I last went actually. If they’re like really guaranteed like armchairs then I’d go to one. But I, concerts, oh, and church is a problem as well because the, the seats can be so hard sometimes. I just can’t sit there for long. I have to get up and walk about. I hope they don’t take it personally. But there’s one church, we go to a couple, one is a Welsh church with wooden seats and no comfort whatsoever. And I cannot sit there, I really can’t, sort of not for an hour without … It’s a pity, isn’t it? I could take my own cushions I suppose. That’s the worst thing I think about the social life, is that really.

 

 

And if I go to, sometimes I do, I go to meetings about the local area, this and that, and I say, “I’ve got to have the armchair.” They probably think ‘what’s wrong with her!’ “I’ve got to have it. My back.” Probably, “Make allowances. She’s older.”

 

When you go to community events?

 

Yes. I really do have to have the comfy chair, otherwise I just wouldn’t be able to sit there and, and be there for the full meeting. Because they don’t tend to just last an hour like the church one does, but two hours.

 

So have you cut down on your sort of commitments? Or do you try and go to meetings?

 

I try to. I’ve cut down a few. Because we seem to be, at one point it was nearly a meeting almost every night. Which was getting a bit silly. So I just said, “I really can’t, I can’t. Not, not any more.” So I’ve cut down. Yes, lots of community things. Busy bees really. 

Sarah fears that her osteoporosis will get worse in the future which will affect her quality of life.

What are your feelings about the future?

 

I get a horrible feeling that I’m not really going to get better at, not at all, but I’m, this is as good as it, I’m going to get. And if I have any more falls I’m going to get just worse in that part of my body as well. And you get a horrible feeling that your bones are thinning all the time in the spine. I can just imagine going snap one day. Because I’m not exactly lightweight. And despite, I don’t, I really don’t over, I can’t see that I overeat, but I must do, and I’m putting strain on my back. And this, because it gets a bit upsetting sometimes. I think, I hope, I want to be able to run around with my grandchildren still. I know everybody says that. But I know I’m getting old for running around now, but, you know . . . I don’t want to be invalided. I can’t see me in a carriage.

 

 

Fractures do heal and you will get better.

All I can say is, “It will get better.” For, even if it’s briefly like me, but it, it will get better. Just, I’m afraid just have to put up with the pain, and it’s going to seem a long, long time, but you’ll get there. And just make the most of everybody fussing over you really. And they’ll say, “Oh, we’ll, we’ll take care of you.” It’s rather nice. But you do put on a bit of weight as well because of everybody looking after you. Good luck. You’ll be all right.

Sarah is starting to do more around the home since her second spinal fracture.

There was a slight getting-better stage between the first and the second accident, but that was only very, a short time. And this has really put me back, the second accident in January, I’m afraid. But I’m starting to get, potter around much better now. I can carry shopping but, but I’m really glad to be home because the pain starts between my shoulders again. I just, I do all the shopping then I sometimes have to call my husband to come and rescue me.

 

Well, shopping, if you go, if you just overdo it slightly. At first I couldn’t carry anything, but now I can carry a couple of bags. But I have to stop a few times on the way home and put the bags down and just stretch upwards to get my spine right.

 

Yes. I find, I find picking things up off the floor, I have to get my husband to come and rescue me sometimes because I can’t, I just look at something, I just cannot pick that up, and he’ll come and do it.

 

So you have problems bending, bending down?

 

I do really, yes. Because as I bend, I suppose I should go from my knees really, then I wouldn’t have the problem. But you know what it’s like, you just think you’d just bend down quickly from the waist and then that’s the pressure on my spine again. So “Oh, oh, oh” and I try to get myself up again by clinging on to something.

 

Are there any particular precautions that you take now? Are you more careful?

 

I was scared of going up on the ladder again, after having fallen off one. But I’m afraid I’m getting a bit bolder now and I will go up it again. And I ought not to.

 

So you don’t like, you’re not climbing ladders any more?

 

Yes, I am. That’s the trouble. Expect more news from me falling off another ladder [laugh]. Yes, a bit bold. I very gratefully did, when we had a bath, new bathroom put in, it had a, what’s it called? a support on the wall. And people were laughing, saying, “That’s for old people.” But they must have had a vision because I’m so grateful for that now. A grip, you know, so that when I get out of the bath I can lean on it and know I’m not going to fall backwards. It’s, that was a bit of foresight there. It’s very, very helpful.