Shelia - Interview 29
Age at interview: 71
Age at diagnosis: 66
Brief Outline: For the last five years before her diagnosis in 2003 she suffered from severe and painful backaches. She was in a wheelchair and her husband was her main carer. She was eventually referred to a consultant who secured funding for her to go on to the teriparatide treatment (Forsteo).
Background: Married with six grown up children, worked part-time as a domestic but took early retirement due to ill health. Two of her daughters have also been diagnosed with the condition.
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Sheila was diagnosed with osteoporosis in 2003 but five years previously she starting experiencing bad backaches. Gradually the pain became unbearable to the point that she was unable to walk and had to spend her days on a wheelchair or in bed, and the GP had to give her morphine injections to help her sleep.
Sheila remembered that she became depressed due to the constant and intense pain and lack of mobility. She explained that all her life she had been used to working hard; she held a part time job as well as looking after a household of eight people. She hated to be confined to a wheelchair.
At that period her husband became her main carer and, apart from helping her with her washing, dressing and so forth, he also took care of the domestic chores. Her daughters used to come around to lend a helping hand. Sheila and her husband said that they are a close family, ready to help one another in times of difficulties.
Eventually Sheila was send to have a bone density scan and referred to a consultant. The consultant admitted her to hospital and conducted further tests; assessed her pain and decided on the appropriate treatment. Sheila was not responding well to any of the medication and consequently the intensity of her pain didn’t diminish. Her consultant told her that he would tried to secure funding to put her on a new, eighteen months treatment called; teriparatide (Forsteo).
Sheila had to wait a number of months before funding was granted to start her on the Forteo treatment. Her consultant told her that this treatment would help her gain bone mass and therefore provide her with a better quality of life. Sheila had not problem with injecting herself and as the months passed, she started to feel better and stronger. Also, during the eighteen months she had several more bone scans that were recording her improvement. Sheila describes Forsteo as a ‘wonder drug’.
After finishing her Forsteo treatment, her consultant put her on Actonel once a week and she takes calcium 5mgs, twice daily. She is also on Omeprazole 2 tablets daily for her indigestion.
Sheila no longer needs to use a wheelchair and she manages her pain by resting rather than by taking strong painkillers. She is able to do some household tasks such as washing up and baking, but her husband continues doing the most physically demanding ones like hovering and gardening.
She and her husband go to the town centre twice a week but Sheila says that she needs to do some more walking and hopes to be able to go out for at least thirty minutes every day.
After taking teriparatide for eighteen months, Sheila said that her bones are stronger and she...
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The second time I went to see him [consultant] he said to me, ‘You’ve got osteoporosis which is deterioration of the bones through lack of calcium’. So he said, ‘I want to put you on this weekly tablet to try and build your bones back up again’. Which obviously the bone tablet wasn’t strong enough because my, they’d gone too far. You know, they were so thin but this is how I kept getting fractures. And so then of course, after a. It must have been going on for a year I would imagine. He said. I had a letter to say he would like me in the hospital for ten days, so ten days like a pain clinic. And he said, ‘I will try you on these various medications to see which suits you best. Which works with you, on you.’ But none of them did because I kept getting a fracture. I’d only have to bend down and I’d get a fracture. My bones were so thin. And then it must have been three or four months later he said, ‘I would like to try and get this Forsteo’. He did say the name.
He said, ‘I’d like to get this funding for you for this drug if I possibly can because,’ he said, ‘I think that is the only treatment what would possibly work with you.’ So I waited about six months I would imagine and then I got the. The nurse came out with the you know, all the pens and whatever like and showed me what to do for the first time. And from then on I started to do it myself.
How did you find that? Was it difficult, easy?
No. I just used to do it in my stomach, in my thigh, you know, when it. I got used to it.
It’s just like having a little needle pricking your finger, you know. And that’s what I say, I was on that drug for 18 months and then after the 18 months like, you know, I came off it but I’m still fine. I think it built my bones right up you know and I’m quite strong again.
But before that I was in such terrible pain. I was in a wheelchair two years ago getting fractures all the time, backache constantly. I had a job to walk. My husband used to have to do everything for me until I used this drug which took three months to work which when it did it was marvelous. I could, I can walk. I can do things now which I could never, couldn’t do before and as I say, you know, it’s a wonderful thing.
And they’re very good, you know the nurse came out. She showed me what to do and she said, ‘If you want me to do it for you every day I will’. And I said, ‘No I’m sure I can do it myself’ [laugh]. So I did. I had a go at doing it myself and I did. I used to do it every day and it was. I could feel myself getting better every day, you know.
Can you tell me more about that?
What the injections?
The getting better bit. How did it get better physically, emotionally?
Oh yeah, I mean all the. Once I knew I was on this drug I felt better in myself as well because I thought, you know, I know at the end of the day it’s going to do me good. I just knew it was going to do, you know, make my bones stronger because he told me this.
The consultant said, you know, ‘Your bones will get strong’. He said, ‘And, you know I would like to keep a check on you and having the, different bone scans now and again which I did. And I could feel myself getting better and stronger. My bones getting strong
Sheila stopped smoking immediately when she had a heart attack.
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I used to smoke. I gave it up four years ago.
Were you how many roughly did you smoke?
I used to smoke, what 20 a day I suppose.
Do you drink alcohol?
No I don’t drink.
No. I used to have the odd drink when we used to go on holiday but of course now since I’ve had my heart attack I don’t drink. I drink juices. I don’t drink any alcohol at all.
Any particular reason why you gave up smoking?
Yeah because of my heart attack.
Because of your heart?
They advised me, you know, not to smoke again. They said it was through smoking what caused my heart attack. So this is why I gave it up. Well I gave it up straight away. I didn’t think about it. I just gave it up like that.
I didn’t take any medication or patches, tablets or anything. I just gave it up.
That must be. Fear was the best therapy in your case?
That’s a good one.
Yes. Yeah because you know some people you talk to they find it so difficult to give up you know. And I think to myself its mind over matter really because I said to myself when I was in hospital, I’m not going to touch another cigarette. You know that nearly killed me and I’m not going to touch another one. And the thought, the smell of one now it, it makes me feel sick. And I don’t, I’ve never touched one since. No never.
Sheilas son remarked on how much better his mother was since being under the care of a consultant.
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I didn’t know anything about it at all. I. He just. Because first of all the doctor said to me, ‘I’m going to refer you because,’ he said, ‘I think your bones are crumbling’. That’s what he said. He didn’t say it was osteoporosis. He said, ‘I think your bones are crumbling’. So this is when I was referred then to this hospital.
Ok to see the consultant?
To see the consultant which I, you know, I did. And he chatted with me and then he said, he gave me an appointment to go back again to have the bone scan.
The second time I went to see him [consultant] he said to me, ‘You’ve got osteoporosis which is deterioration of the, the bones through lack of calcium’. So he said, ‘I want to put you on this weekly tablet to try and build your bones back up again’. Which obviously the bone tablet wasn’t strong enough because my, they’d gone too far. You know, they were so thin but this is how I kept getting fractures. And so then of course, after a. It must have been going on for a year I would imagine. He said. I had a letter to say he would like me in the hospital for ten days, so ten days like a pain clinic. And he said, ‘I will try you on these various medications to see which suits you best. Which works with you, on you.’ But none of them did because I kept getting a fracture. I’d only have to bend down and I’d get a fracture. My bones were so thin. And then it must have been three or four months later he said, ‘I would like to try and get this Forsteo’. He did say the name.
He said, ‘I’d like to get this funding for you for this drug if I possibly can because,’ he said, ‘I think that is the only treatment what would possibly work with you.’
So that’s when they referred me to. And that must be what, five or six years ago wasn’t it [husband]. Five or six years ago that was.
So now you are under the care of the consultant?
I’m under the care of Dr [name].
Son' Since my mother has been under the care of the consultant we saw such a rapid change in my mother. She went from a frail, looking old lady to who she is now. I think if the doctor’s had diagnosed her earlier, the GPs I don’t think my mother would need to have suffered the pain that she had done. And if they’d sent her for the x-rays or a bone test earlier it would have saved my mother a lot of anguish.
And the family. Since she’s been under the consultant in the [name] hospital in [city] he’s just turned my mother around.
Sheila needed to start taking morphine when other painkillers stopped being effective.
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Which medication did he put you on at that point?
Yeah the risedronate tablet once a week. I was taking that plus co-codamol they were quite a strong tablet. Yeah, I was taking maybe two every 8 hours, every, you know, two for 8 hours. And nothing, you know the pain was still there. Nothing seemed to take the pain away. It was just terrible. And he did prescribe other, other tablets as well you know but I’m not. I can’t quite remember the names of the other tablets but nothing seemed to work with me anyway.
They were giving me co-codamol and then they were doing no good so they gave me morphine. I had the morphine injection. And I’m still taking the morphine tablet once a day for my spine because I still get pain in my spine because the vertebraes have deteriorated through wear and tear. So this is why I’m taking the morphine. It does help. And they’re, you know, they’re like a slow-releasing painkiller.
How do you take that, in the morning or the evening?
In the morning, yeah in the morning.
On an empty stomach or?
I take it on an empty stomach yeah before I have my breakfast, yeah.
What happens to you in terms of pain if you don’t take it? Can you tell me a little bit?
Well if I don’t take it I start getting terrible back ache, you know. And I mean sometimes I, if I walk quite a distance I’ve got to take other painkillers as well because it’s not. You know, I know the drug did me good, the Forsteo drug was marvellous. It works on me. It’s just that my spine has deteriorated through wear and tear. And if I’d had got this drug maybe sooner, years ago my spine might not have been like this. You know it. But it is a wonderful thing.
Sheilas husband took over the cooking and the housework after she was diagnosed because she was...
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You assumed a very important domestic role. You were not just caring for your wife you were doing all the domestic chores. So can you tell me as you were telling me before about it?
Shelia' How you had to dress me and bath me...
Husband' Yeah in the beginning when she first was diagnosed with this she couldn’t do anything. And as for my army training ironing, washing, you name it I had to do it. And bathing, washing, putting her into bed and it was a struggle. But [cough] as for this wonder drug that I call it, she has come with leaps and bounds and if it is available to everybody that was in her position then they would find themselves a miracle because it is a wonderful drug. And as it is now, well she was in a wheelchair then. Then we threw that away. Walking sticks, we threw that away. Then the next thing was to buy a little trolley and that gives her the help she wants. She can’t walk no more than 200 metres without having to stop, sit down. But before then of course as I say, wheelchair, walking sticks before this drug.
And how easy was it for you to assume all these domestic roles when she was in a lot of pain?
Husband' Well I think, I think it’s having a big family, having to share the work. We’ve always done things together or it may have been 80% her, 30 or 20% me but we always had to do it. And if it’s just pulling together. You know what I mean looking after one another. But as I say it was hard at first because you had to push the wheelchair everywhere. Get it into the car and all.
And it was it was reversed because I was working and I would say, not fortunately but it came to the latter part of us retiring rather than the earlier part where I was working. So for me it was a full time job.
To look after your wife, yes?
Husband' To look after my wife
So you gave up working at that point? You were working part time?
Husband' No I, well yes, yes I was working part time.
Shelia' You had to give it up didn’t you?
Husband' And of course I had to give it up. But when I look back it was hard work. Now it’s got easier through this wonderful drug.
And how did you feel about sort of doing women’s work around the house' ironing, cooking, hoovering?
Husband' Didn’t, didn’t bother me.
Shelia' Well I always used to do the cooking at one time but now he does it all.
Husband' I do everything. And you just get into the routine. And keeps you out of mischief.
Shelia' I mean it was hard at first for him because obviously he wasn’t used to doing all the ironing. I always did it. I always did the cooking, the ironing,
Shelia' The cleaning because he was working. I did everything. And then, then the roles reversed. He had to do it all so it was difficult for him, you know.
Husband' As you can look, see by this I haven’t done a bad job [laugh].
This is very good [laugh].
Husband' No it’s the thing that you, you’ve got to get into and look aft