Iris - Interview 24

Age at interview: 60

Age at diagnosis: 59

Brief Outline: Her diagnosis of osteoporosis was prompted by her being invited by the osteoporosis nurse for a bone density scan. The type of fracture she had was unusually severe for the type of fall she incurred and, her age. She takes Actonel 3mg once weekly and calcium tablets.

Background: Married; two daughters. Iris has recently retired and says that it is in denial about her osteoporosis because this was supposed to be her 'me time'.

More about me...

In December 2006 while on holiday in Ireland Iris fell and broke her arm and left shoulder. Her arm was put in a sling and she was given painkillers. She came back to the UK and went to the fracture clinic at her local hospital. She was x-ray and they told her that she had multiple fractures in her arm and shoulder and that she needed to have physiotherapy. She had physiotherapy sessions for twelve weeks.

 

Some time later Iris received a letter from a specialist osteoporosis nurse from the Rheumatology Department in the same hospital who invited her to come for a bone density scan. The nurse explained that one of her tasks was to go through the records of patients her age who have sustained severe fractures. The bone density scan revealed that one hip was osteopenic and the other osteoporotic.

 

After her diagnosis a series of tests were done to establish her overall state of health. She was found to be low on D3 and was given a bottle of Calciferol to be taken within two days. The nurse also wanted to start her on treatment. She suggested an intravenous injection called ibandronate 3mg once every three months. Iris declined that medication because she was concerned about the side effects. The specialists nurse told her that she would experience flu like symptoms at the start of the treatment. Iris had suffered from severe anaemia for years and didn’t want to feel more exhausted or ill. Her GP started her on an oral medication; Actonel (risedronate) 35 mg once weekly and calcium tablets.

 

Iris saw the specialist osteoporosis nurse three times and now she is under the care of her GP surgery. Iris is not totally happy with the care she receives for her osteoporosis. She explained that now it is just a question of repeat prescriptions but there is no proper doctor-patient communication about it. She describes her GP as lovely and helpful but feels alone when it comes to osteoporosis care. There is no one regularly checking on how she is doing or to ask questions to.

About her condition she says that she is doing everything she can to prevent any deterioration but would like specialist advice.

 

There is no maternal history of osteoporosis and Iris thinks that her condition was caused by heavy smoking. She used to smoke forty to sixty cigarettes a day until the age of forty.

 

Her feelings about osteoporosis are those of being in denial. She has recently retired and felt that this time was suppose to be ‘me time’.

 

After a fracture, Iris received a letter from the osteoporosis specialist nurse inviting her for...

Came back home, went to the fracture clinic and they said the same, “There is not a thing we can do for you, it is going to be painkillers. We can’t set it. We can’t do anything. Because it was broken here and it was broken here.”

 

So then I went just for six weeks I think it was, backwards and forwards to the fracture clinic and they x-rayed it regularly and everything and I then went into physiotherapy for about twelve weeks after that.

 

Nothing was mentioned to me, at that time, about osteoporosis, my age, anything, this was purely all about me, and the fall. I had left work. When I

 

I got a letter out of the blue, I think it was in March from a [specialist osteoporosis nurse], and she was something to do with the Rheumatoid Department. And she just sent me, I think it was a letter or a phone call, saying, “I understand that you’ve had a break recently, and it is my job to go through, you know, the records, to see why people, you know, and to see women your age, to see you know, why they have breaks and everything else.” And she said, “I wonder if we could invite you in for a DXA scan. Just to see just because the damage that you sustained on a trip and fall was quite severe, you know, for someone your age.”

 

And so we made an appointment and I went in and I had the DXA scan, which revealed that one hip was osteopenic, but one was osteoporotic. That is the way it was explained to me. Whether I’m saying this right or not, you’ll have to pick the bones out of that. But that’s the way it was explained to me.

 

And she took, when we got the results of that, she then took a complete battery of tests, of blood tests, of absolutely everything.

Iris had physiotherapy for 12 weeks and then she continued on a daily basis with the routine set...

Came back home, went to the fracture clinic and they said the same, “There is not a thing we can do for you, it is going to be painkillers. We can’t set it. We can’t do anything. Because it was broken here and it was broken here.”

 

So then I went just for six weeks I think it was, backwards and forwards to the fracture clinic and they x-rayed it regularly and everything and I then went into physiotherapy for about twelve weeks after that.

 

And it is fantastic. But the thing is, you see, because I was newly retired, I didn’t want any handicap at all. You know, that’s the wrong time of my life for me to sudden have a bad arm or anything else. So I was able to devote totally my time to physio and everything else, to get the use of it back. Which I did, so I used to have my hot wheat bags, and my paracetamol and codeine and I would take that. Then my hot wheat bags, then I would exercise. So I was just going all through these things. And it is fantastic. Sometimes I get a bit of pain in it, you know, which I am bound to get, I guess, but nothing else. So, you know, I was quite pleased with that. 

Iris who is osteopenic went to an education class run by the dietitian at her local hospital.

Where have you got your information from?

 

Oh magazines. Internet. All this lot were sent through to me from one of the drug companies I think, for Adcal or the other one. And various information. But I read up about it when I was first diagnosed.

 

Do you remember which internet site have you looked at?

 

I looked on the National Osteoporosis Society website probably only that one. I think it was a forum or something or other.

 

How useful did you find the information?

 

Oh I found it. I found it quite frightening actually to be honest. I didn’t find it very relevant for someone my age, and I have been warned about that. They have a meeting place in [borough], but it is much more an old ladies…with people that have got severe osteoporosis.

 

And I also went, the dietician at [hospital] she also does a class an information class, a diet and everything else for people that are osteopenic and whatever and I went to that, and I took one of my daughters, I have got twin daughters and one of them is non dairy, so it was, you know, it was suggested that I take her with me, because you know, it could be relevant to her, even though I don’t think its hereditary I don’t know.

 

How did you find the class?

 

I found her class very good, because it was all about diet and everything else. And as I say I read up, I read as much as I could every time, you see something about osteoporosis then you read it don’t you, and lists of what foods are best for you, and you know. 

Iris was put off by her local group because she was given the impression it was for elderly people.

You see I have not given the National Osteoporosis Society a chance, to even see if other younger women are turning up. But then, if the women at the hospital says, “Don’t go. It’s full of old ladies.” Then you are not going to are you?

 

Okay, so you haven’t found out by yourself on your own. So you haven’t been there?

 

No, no, because I was put off. I was put off in that it was not relevant to me. When I went to [name], who was the dietician, at [hospital] and she had her class, there was some, you know, there was some people there, that some were osteopenic and some were osteoporotic. And I went with my daughter and that, and you know, that was okay. They weren’t elderly. I don’t know why, I can’t see in my mind what I would consider elderly. I think….

 

There is no time to waste. You don’t expect to get hit with sort of things like osteoporosis and this that and the other. And some people don’t expect to get hit by death at 60. And I honestly, I honestly believe that that is what your life is about. It is about making the most of it, and doing it. And that is it. So you know, I am in denial about this. This is for when I am elderly and at the moment I am not elderly. Because I have got this problem with being elderly.

Provide ongoing support for the newly diagnosed and opportunities for people to share their...

I think, if, yes, I think when you first get diagnosed you need time to digest this information and to go off and to start living with it, and assimilating all the information, and the dietary changes and all the things that you are actually going to do and I don’t think it’s good enough, just to have one call back, and then be left, that’s it. I think it should be regular, you know, come back after three months, and then another three months, until it gets to you that you think oh have I got to go back again? Oh. Do you know what I mean, so that all things that occur to you when you are living your life and all the things that you are not quite sure about you know that you are going to go for an appointment, and you are going to be able to speak to someone and may be they should be doing groups, you know, so their appointments become like, I don’t know, just sit round and what’s your experience, and do you get pain. So that you could actually sit and talk to people with a professional there, so that they can answer these questions and feelings and feelings is a bit, you know, I am not asking for counselling sessions, that is not what it’s like the unburdening information, you know, group. So that another girl, see here I go again, girl, my age, another girl going through the same thing as me. We can compare notes. It is not that I am not trusting of the internet, because I, you know, I have been on a computer for years. I don’t know, I am just such a socialised person, that, you know, I would want to talk to you about it, and you know, or another girl who’s saying to me, “Oh have you tried and such and such yoghurt?” Or, “Have you done so and …” Just first off of to get you into the, so you are not on your own dealing with this, and you know, to say to someone, “Oh, don’t go to that group, it’s full of old ladies.” Do you know what I mean. So you are actually, ready, you’re isolated. You’re not going to find anything there because they are too old. So I think, yes, I think an aftercare, if you are going to be signed off to your doctor, do it after a year or something, or have a regular group or something, you can just go to with a professional, someone who’s got the answers, they know.

Iris is thoroughly enjoying her retirement and her osteoporosis has very little effect on the...

Walking, line dancing. I still ride my bike. But of course my life has changed. As if, if I had been diagnosed when I was working it would have been a completely different life, then, because I was sort of sitting at a desk all day. And now, I don’t go to work. So, but so my life has changed completely anyway, and yes, we got out every day. We would normally be out today. Every day, we just get up and get out and then we come back in the afternoon and husband has a bit of a kip and I will do whatever I want to do, and that’s what we do.

 

 

My son is here with us. He is 30. So there is three of us, and …

 

Are you enjoying your retirement?

 

Absolutely. Absolutely. And feeling much better, you see. That makes, so there is more things I can do.

 

I’m lucky because I’m busy, so it’s not a big thing in my life. Because I’m onto the next thing, you know, where are we going go, what are we going to do. But for someone who may be hasn’t got, I mean I haven’t got money, but I make a big thing about getting as much money out of anything as I can. Do you know what I mean I have got the time to do that. So I cut vouchers out and I go off and have a cheap meal or whatever, and we do silly things like that, but some other people may not be, well they may not even have the mindset that they want to go out and do things and whatever. They may want a friend or… I don’t know. But just, but just to I don’t know.

 

Your social life, you said is quite busy?

 

Yes, and we always were. I mean we used to rock and roll, we used to jive and everything else. We have always been dancers and things, but I have always been busy, but even more now obviously because we have got day to day that we can, every day is like a Saturday isn’t it, you can go out. 

Iris would like information and advice that is relevant for an active person and she tries to...

I would. I would like information that is relevant, yes, for an active person. Not oh good look at her bent double and, you know, oh she can’t manage with a, you know, she has got to have a stick and, I found it, when I went on the web site I found it very frightening. When I started, you know, I started looking at side effects and I thought, I don’t even want to go there either.

 

The side effects of your medication?

 

Of medication and things. Do you know, I just don’t think it’s helpful. I know you have to know things, but you could get bogged down with all the negatives when it should be promoted. I try and look at it as how lucky were you, that you fell over, that they found that you had it at 60, so that you could be taking medication to prevent it being worse. Now rightly or wrongly that is the way I look at things, because your mind is so persuasive, you know, if you get into this, oh God. They say that this, you know, you could have problems with your gums with this and you could have and so and so with that and is that helpful and lose all your teeth next year or, it is just not helpful is it. So that was my thing really. So I don’t look on the internet about it any more. I have noticed whether that’s because I have been diagnosed that there is much more information around these days. In women’s magazines. Absolutely everywhere, even on the television now for getting your calcium servings a day, getting out in that sunshine for 20 minutes a day and everything else. But it is like anything else, if you are suddenly brought up aware of something, you do notice it everywhere. It is like if you are going to go to Scotland for a holiday all of a sudden, the literature and everything around you relates to Scotland isn’t it. Because you just notice it.

 

So yes, that is what I would like, people my age, coming up to, you know, who have looked forward to their, their retirement, you know, to be doing things, not to be, you know, sort of trodden down by this and …

 

Would you like to talk to other women like yourself with osteoporosis, who are sort of, sixty, active?

 

Yes, probably. You know, I have been reading case histories in here. This came through with the Actonel I think. There were four lots, and they have got a case history there. She’s pretty much like me, you know, got grandchildren, getting out there, doing it, and everything else. So, yes, I found that, sort of quite positive, you know.

In her forties Iris had partial hysterectomy (ovaries were not removed) but she is convinced that...

So what do I think caused it? I think because I was such a heavy smoker up until I was 40. I used to smoke 40 to 60 cigarettes a day. And also I think because I had a… and I stopped when I was 40 because I had to have a hysterectomy. So I needed to stop smoking for the operation. The hysterectomy was to try and cure the iron deficient anaemia problem. And, they left my ovaries there. At some stage I had… oestrogen.

 

HRT?

 

Yes, but it was just oestrogen only. And, but it didn’t agree with me at all. The pill never agreed with me, and the oestrogen didn’t either and I had a suspected deep vein thrombosis. And so I wasn’t on it very long and my legs would swell up and everything else and then after nine months, the consultant said, “Oh we could probably put you on Premarin.” Is it? Is that one of them? And I said, “No I don’t think so.” So I was only on sort of HRT, not for very long. I wouldn’t have said more than a year. I wouldn’t have said.

 

From what I understand about osteoporosis that could have been the reason that I have got it. I had no family history at all. My Mum’s one of ten. Seven sisters. And nothing. And my grandmother lived till she was 94. She was straight backed like me. No Dowagers humps, nothing in the family at all. So I put it down, probably the smoking. I have always eaten dairy, always, I have always been similar weight to this really.

 

 

Iris doesn't want her condition to affect what she wants to do in her retirement so she admits...

What are your feelings about the future?

 

I’m in denial. Absolutely. Like I explained to you. This because I was the oldest of six children, I had to help my Mum with all the children. And, then I had twin girls of my own. And my husband had been married before. It has always been tricky, very, you know, money wise and everything else, and so he has been retired ten years, but I had to work to finish paying for the house and everything else. And I just feel that I have fulfilled all my responsibilities now. I have done everything for everybody, you know, and I bought the house. That is paid for. I am mortgage free. That is it. And this is my time. Absolutely my time. So its I do what I what I want to do, you know, whether I want to, it is like I said to you about taking my grandson out. You know, and like the parents go out, and we found, it was on Teletext the other day we found a cruise of the Norwegian Fjords for £379 each. That was the Friday. It was to go on the Tuesday. So we went. And that, probably because my friend is 60 and she lost her husband last year, do you know what I mean.

 

There is no time to waste. You don’t expect to get hit with sort of things like osteoporosis and this that and the other. And some people don’t expect to get hit by death at 60. And I honestly, I honestly believe that that is what your life is about. It is about making the most of it, and doing it. And that is it. So you know, I am in denial about this. This is for when I am elderly and at the moment I am not elderly. Because I have got this problem with being elderly.

Iris feels that she is doing everything she can to manage her osteoporosis well, but she would...

Like being in denial for a kick off and my belief is that I am doing everything I can, to, I’m working with the tablets and everything to prevent, that’s my belief that I’m preventing it getting any worse. And its my belief that I am doing that. As I say, if I had the chance of a, you know, a real consultant, you know, I would try and get them to estimate, what might happen to me, and what I need to look out for and everything. My belief is that I am doing the best I can, and I would advise anybody else to do the same. But whether I find out in years to come, that it wasn’t, it’s not stopping it, well I don’t know.

 

You are just left there aren’t you, you know, there’s no one…

 

And that’s how you feel?

 

Yes. I feel that I still don’t know. I am doing the best I can, on the medication that I have been given. But I actually don’t know if it’s going to stop me getting any worse, or whether, I will get worse.