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Neville - Interview 26

Age at interview: 74
Age at diagnosis: 69
Brief Outline: Medication; Didronel and later Fosimax but he did not stick to his treatment. In 2005; diagnosed with rectal cancer, had surgery and now uses an ileostomi bag. Neville wants to find out about non-oral medication for osteoporosis. Takes painkillers every day because he suffers from severe back pain.
Background: Neville is married, has two sons and he is a retired Head porter. He is grateful for all the support his wife, sons and grandchildren give him.

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Neville’s health problems started in 1999 when he was diagnosed with ulcerative colitis. He was very ill and in hospital they started him on prednisolone, intravenously. For the next two years he continued taking large doses of prednisolone. One day when he went for a check up at the hospital the consultant sent him to have a bone density scan. On his next check up appointment, some three months later, the consultant told him he has osteoporosis and that he would write to his GP. 
 
He was told that most probably the high doses of prednisolone had caused his osteoporosis. There is no maternal history of the condition but Neville used to be a heavy smoker until eleven years ago.
 
Neville’s GP prescribed what he thinks was Didronel but he kept forgetting to take it. He said that his diagnosis didn’t worry him and for the next three years he continued stopping and taking his medication for osteoporosis. He remembers that Didronel made him feel sick and his GP prescribed another drug; Fosamax but this later one also gave him painful indigestion and Neville stopped taking medication for osteoporosis altogether.
 
Neville indicated that there is no one else to blame but himself, for not adhering to his osteoporosis medication. He went on to explain that at the time of his diagnosis he was given a leaflet that provided some, but certainly not enough information for him to understand the importance of medication.
 
In 2005 he was diagnosed with rectal cancer, had surgery and started treatment for that. He has an ileostomy bag. Neville is unable to take oral medication for his osteoporosis. Neville has several other medical conditions' occasional angina, emphysema and skin cancer.
 
Neville explains that everyday he takes - apart from many other medications – painkillers for his back pain. He is allowed to take up to eight tablets but he prefers to limit its intake to four a day. Until recently he took Co-proximol and now takes Co-codamol. Apart from painkillers he has found that resting on memory foam cushions and mattress helps him to cope a bit better with his pain and make him more comfortable.
 
Neville has reduced mobility and while he is able to walk very short distances he is unable to stand for long. He loves his garden and used to dedicate lots of time to it. Now, his sons and grandchildren help him by doing the heavy, more physically demanding garden work. He still manages to work on it but his wife makes sure he doesn’t overdo it! 
 
Neville is grateful for all the support he has received from his wife, sons, daughters-in-law and grandchildren. Neville says that his wife has been his rock and that he ‘would be lost without her’. At the time of the interview he was due to go and see his GP and make enquiries about non-oral medication for osteoporosis.
 

Neville had stomach cancer and underwent an ileostomy three years ago. He said that he stopped...

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That’s right, yes, the Fosamax. And I haven’t taken any for some considerable time.
 
So you just took it for, for a little bit and then just forgot about it?
 
Forgot about it. I, at the moment I don’t take anything. I just watch what I’m doing and be careful. But I do I must admit, I do suffer from very, very bad pain, lower back pain.
 
Was the Fosamax also giving, giving you stomach trouble?
 
It gave me tummy trouble, yes, yes. So I didn’t take that.
 
Were you getting acidity?
 
Yes, that’s right, yes, yes.
 
So it was painful?
 
Very painful. So I forgot about that. I probably I’m, I’m lucky really because normally I, I’m very tolerant with tablets, because I take quite a, have to take quite a few tablets and I’m all right with those. I mean years, eleven years ago I had a heart attack and they tried to put me on a tablet, and I couldn’t take that. So they decided to take me into hospital for a week to concentrate on me taking that tablet and eventually I managed to take it. So now I take it twice day and, religiously. But that’s just one thing.
 
I think if I’d had more information, probably knowing what it involved, I may have persevered more. But I really haven’t had any sh-, form of information about osteoporosis. One piece of paper, that’s all I’ve ever had. N-, nobody’s ever spoken to me about it, what it involves or, and they just said to me, “Well, you’ve got to be a bit more careful in case you break your bones.” And that’s as far as it’s gone.
 
And do you remember roughly when did you stop taking the Fosamax altogether?
 
Some time ago now. I can’t remember now. Some, some time ago. It, it must be a, must be a year ago.
 
What do you think would have helped for you to remember to take that tablet?
 
I don’t really know. I suppose it’s me more than anything. I can’t blame anybody else but myself really. My wife did, does remind me of taking the tablet, and I said, “Oh, no, I’ll take it in a minute.” Then I forget if I’m doing something. But I suppose I’ve got to do something now to try to ease this pain in my back.
 
So have you made an appointment to go and see your GP?
 
Well, well, I’ve got to go again in about four weeks’ time and change, have my prescriptions renewed, and then I shall bring the subject up then.
 
I have a, ileostomy bag now, since I had my operation three years ago. But I’m all right. I mean I’ve quite well, you know, I’ve done quite well really. I mean once, when I had the, after the cancer operation, I was in hospital five weeks, but after about four weeks my consultant, Mr [name], came out and said, “You don’t need any further treatment because it’s cleared.” And so far, touch wood its, I’m okay.
 

Neville takes frequent rests to ease the pain in the bottom of his back.

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Now I have to worry what I do because of a certain amount of pain in my back and the os-, with the osteoporosis and through the operation, which has left me rather a-, unable to do a lot of work what I like to do. Which, I just work for about ten minutes, sit down for a few ten minutes and get rid of the pain in the bottom of my back, and then I carry on again. I try, not to let it affect my life, but unfortunately it does. But I’m allowed to take eight painkillers a day, but I only take four because I don’t like taking too many tablets. But that’s how it, I’m, luckily never had a broken bone. And so I’m very conscious of, of the fact that it could happen. So I, I monitor myself in actual fact, you know, what I do. And that really brings it up to basically what, what I am this present day. So I just carry on as best as I can.
 
So when did you start experiencing bad back pain?
 
Very, very bad back pain, after I had my operation.
 
Three years ago?
 
Three years ago. It really really got bad. But before that I used to tolerate it. But it’s gradually got worse now. But the, I read, I belong to the Ileostomy Association and they, that says that after the operation I had it does cause a certain amount of back pain. So that’s probably why, possibly I, it’s worse than it would be. But I have to put up with it. So that’s it.
 
If I’m working in the garden and I’m bending down, it hurts me. And I manage to, what I do is to sit down for a few minutes and, and I get up and start again. I can’t walk very far these days because it hurts me. I use a stick, as I said, now and that does help me considerably. When I first get up in the morning too, it hurts me a lot. We recently just bought a new bed and we bought a memory foam mattress and that has helped considerably. We’ve only had it about three weeks, but I found that does, has helped.
 
But I do have problems sleeping. I do sometimes get terrible cramps in my legs. Whether it’s anything to do with, with the osteoporosis, I don’t know. But sometimes it’s so bad, [name], my wife has to rub my legs to get rid of the pain.
 
What else helps you when you, when you have that pain? Resting?
 
Resting, always I find if I sit down then it, it eases, and I then carry on again. So it, it, rest does help considerably.
 
So the, the pain is triggered by you doing too much?
 
Yes, yes, yes. That’s why I, I make sure I stop then. Because I know I could be, you know, if I carry on I’m going to be in agony for the rest of the day.
 
Sometimes it worries me when I can’t, I get annoyed with myself because I can’t do what I used to be able to do because of the, basically the back pain. And one minute I get pains in my leg also if I, you know, I get pains all over at times. And I get frustrated because I can’t do things I used to be able to do, especially my garden, which is my pride and joy. And if I want, I grow all my own plants from seed. And now, where once upon a time I used to just stand at my, in my greenhouse and prick all my plants out, I have to sit down and do them now because of the pain, the back pain and my legs hurt. So that’s one thing that annoys me. But quite often I’ll bring my plants down in the house and sit down in the house and do them while I’m sitting down. 
 

Neville might have persevered more with his medication if he had more information about...

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I never knew anything about osteoporosis. My GP gave me a leaflet, which does, didn’t say very much about it. And to this present day I still don’t know nothing about osteoporosis. So I know it, you know, I have to be careful about, breaking your bones. I’m aware of that fact. But other than that I just carry on.

 

I think if I’d had more information, probably knowing what it involved, I may have persevered more. But I really haven’t had any form of information about osteoporosis. One piece of paper, that’s all I’ve ever had. Nobody’s ever spoken to me about it, what it involves or, and they just said to me, “Well, you’ve got to be a bit more careful in case you break your bones.” And that’s as far as it’s gone.  
 

Neville had ulcerative colitis and took high dosages of predniselone over a three year period. He...

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What do you think caused this osteoporosis?
 
Well, they reckon it was caused through taking prednisolone, a very high dosage of prednisolone over a two or three year period when I had the ulcerative colitis. When I first, was first diagnosed with ulcerative colitis I had intravenous, the prednisolone, very high dosage. And I took prednisolone for three solid years before it was reduced. And this is why they sent me for the back, the bone scan, and that’s when, they reckon that’s what caused it.
 
Did your mother have osteoporosis?
 
No, no, no. There’s never, nobody in my family or my wife’s family ever had osteoporosis.
 
 
But I mean, before, I mean before I had the, my operation, I used to take a lot more tablets. But when, when I had the operation they took all the pr-, the inside away, so I don’t, I’ve lost, quite a few tablets I don’t take now. I mean I don’t take prednisolone any more. Only, I can take prednisolone, occasionally if I really have a bad spell I can take a course of prednisolone and it takes the pain away for a while. And that seems about the only thing that does help at the moment. But I don’t take it very often these days.
 

Neville is unable to do as much gardening as he used to and he now relies on his sons or...

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Tell me a little bit about these things that you have stopped doing in order to take care of your bones.
 
Cutting the lawns is one thing I’ve stopped doing. Because I’ve got lawns at back and front of the house, a rather big lawn at the back of the house, and it makes me very tired now if I try to do that. So the boys always do that. Lifting. I’m very careful what I lift now. And bending. I came down on, I get down on my knees now instead of trying to bend over and picking something up. I suppose, so it has altered my life in some respects I suppose over the years. But I try as best as I can to carry on as best as I can.
 
We have talked about sort of you not being able to do your garden?
 
Yes, that’s a very, in that respect, yes, it’s all, it has affected me, not able to do a lot of things like climbing ladders and things like that. I’m terrified of doing anything like that in case I slip, doing anything like that. And doing any heavy lifting and, and a lot of gardening. Digging. A thing, I can’t do that sort of thing any more. I used to do everything like that. Now I have to rely on my sons to do it for me, or my grandchildren, one of my grandsons. So that’s it’s affected me in some ways, but in other ways I just carry on as normal.
 
Sometimes it worries me when I can’t, I get annoyed with myself because I can’t do what I used to be able to do because of the, the, basically the back pain. And one minute I get pains in my leg also if I, you know, I get pains all over at times. And I get frustrated because I can’t do things I used to be able to do, especially my garden, which is my pride and joy. And if I want, I grow all my, I grow all my own plants from seed. And now, where once upon a time I used to just stand at my, in my greenhouse and prick all my plants out, I have to sit down and do them now because of the pain, the back pain and my legs hurt. So that’s one thing that annoys me. But quite often I’ll bring my plants down in the house and sit down in the house and do them while I’m sitting down.
 

Neville thinks himself ‘very lucky’ to have two sons that visit every week and do things for him...

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I can talk to my wife about anything, anything at all. She’s very, very supportive. Well, we’re very supportive of each other. I mean we should be. I mean we’ve just had our 50th wedding anniversary.
 
Congratulations.
 
And that was a fortnight ago actually, a fortnight ago tomorrow. So that was good. But she, she’s been a real brick. She’s been absolutely fantastic with all the problems I’ve had over the years, the last few years. She’s been absolutely wonderful.
 
And what about the rest of your family, your children?
 
I have two boys, [son] and [son], and they are very supportive, both of my two sons are. And I’m not allowed to cut my lawns any more, and one of my boys will come and do it for me as they don’t want me breaking bones and things like that. And I never do any decorating or anything like that now. My sons do it for me. And also my grandchildren too, because we have some adult grandchildren and they’re very supportive and they help. And even my granddaughter’s boyfriend [phone] comes and decorates for me. So it doesn’t, so I don’t overdo it.
 
I don’t like asking people to do things for me. But it’s now got to the stage where unfortunately I have to. But my two, as I said, my two boys are absolutely fantastic and they support me a great deal. Because they live, one lives in [town], the other one lives in [town], and they come over two or three times a week. Anything wants doing, they do it. Very good.
 
Yes, I think I’m lucky that I’ve got two brilliant sons. And, well, and my daughter-in-laws are, they’re the same, you know. They all help. They know the situation as it is, and they appreciate the fact that I can’t do things that I used to do as before. 
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