Now when my doctor turned round to me and said, “Well theres this illness called focal segmenta;bromular sclerosis,” I was trying to work out whether he continued the discussion in English or it was a foreign language. He was fumbling with his notes and embarrassed and I said, “It’s terminal isn’t it?” so he said, “Yes it is,” and there was that instance. I’m taken into hospital a lot because my bladder goes into spasm or I get uncontrollable pain that needs intravenous morphine which I can’t do myself, and when the doctors sort of look through the notes and they come in and they say, the first thing I say to them is, “Look I know it’s terminal so you don’t have to sort of beat about the bush,” and the look of relief on their faces when I’ve told them, it’s as though phew, thank God we don’t have to go through that. People don’t like giving bad news and I believe that they, there is no nice way of saying it, you don’t walk in and say, “You’re going to die,” no one does that not unless they’ve got the most incredibly bad bedside manner. But you tell, somebody would want to know, I know I would want to know.

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When I was first diagnosed in the hospital, a consultant, who I’m glad to say has now retired, said to me, ‘Oh, weve got your diagnosis. I’m sorry, you’ve got a, an incurable disease and we can’t treat it’, now that was true but I think the doctor, the ward doctor, came back to me and when he explained it to me in detail and in drawings, I felt much happier.

Can you tell me how you would have been preferred to have been told?

As the doctor did, he sat on the side of the bed, he had a pad of plain paper and a pencil and he drew the spinal column, right, and he showed the scarring as much, as near as he could, my particular scarring;

He explained how messages travelled and he said, ‘The trouble is when they hit a scar they’re delayed, they go to the next scar and they’re delayed a bit further and further and further and further. If you’ve only got slight scarring or very little scarring that’s when it’s, MS. But unfortunately I’ve got quite severe scarring, and so the messages are delayed quite a bit.

How do you think that information should be given?

Well, I think it should be given in the way that my present consultant has given me other news. He sits you down and he smiles at you and first of all you realise that hes on your side, hes with you and he understands you and he understands you as a person and when he tells you or gives you news, like when he gave me the final diagnosis, it was done in a way that, in fact he held my hand, you know, and he told me first of all, he built up to it, he didn’t just blurt it out.
You were talking about how you feel information like that should be given?

Gently, but factually, I mean when, certainly people that like to know the facts and I’m one of them, but if they’re going to be pretty dramatic then I think it’s only right that they should be given to you in a very sympathetic, that’s the word I think, in a sympathetic way and that you realise, as the patient, that the person giving you that information understands that you’re going to have to take that, take it on board and, and come to terms with that, which for me has been very difficult because of other reasons, not that, I think it’s very important the way that these things are broken.

It doesn’t really matter how brave you are or how not brave you are, if you’re going to have bad news of any sort, any sort of bad news, I’m sure there must be a way of, of easing it so that you can make it as gentle as you can to the person that’s going to have to receive it.

I had an appointment within two weeks. Went there and saw the gynaecologist who took a biopsy, examined me, had a scan, a quite intensive… the ultrasound, quite intensive, longer than I’ve had before. Went in and saw him and he said, ‘Well’ he said, ‘Come, get dressed come in and well talk about it and well ask your husband to come in’ and I said, ‘Well don’t frighten him’, you know, I said ‘But hes been out there a long time. [He] came in and more or less, almost patronisingly, called a, brought in a Macmillan nurse, which immediately put my back up because I remember when Macmillan nurses were only brought in at the last minute.

Obviously it’s all different now, but this was it and he said, ‘You’ve got a tumour there and he said, ‘Were not sure what, if it’s the same tumour (or whatever), but it’s clinging to (whatever)’ he said, ‘Were going to take another scan and see he said ‘But the ultrasound shows the liver is clear but we don’t know where else it is,’ and they painted a very grim picture. I mean I came out of there not… I didn’t even think I would get home. I must admit he was charming, he was lovely, but I think it was too patronising because it really… I was so upset. I was just stunned, absolutely. I mean I was stunned last time, learning about cancer.

Well that was in November and as soon as I started on the treatment, actually, I did improve. But when I went to the hospital where they gave me a thorough going over before I started on the treatment, it was… I asked the chap who was extremely nice, I must say;

I took a friend with me which was a good thing to do. She insisted on coming and she wrote down anything because when you, I think I was there for about two hours actually, when you have a long interview like that you can’t always remember everything that they’ve said;

But I did say to him, I’m not sure with hindsight whether this was a good thing or not, but I said, ‘I really would like to know what the prognosis is going to be because I have three children and their father’s dead already so, you know, I need to get my affairs sorted out”; And he said ‘Well, could just be just a few months or it could be more. It could be up to two years’; I said, ‘Is that the best I can hope for?; He said, ‘Well that would be a good outcome. So that wasn’t very cheery news to say the least.

But I think what it would have been good if hed said, ‘But there are lots of things that you can do too, you know, yourself and you can probably, you know, get the best outcome by trying to be positive about it, by keeping yourself healthy. You might want to try relaxation or meditation or and so on’;

But one of the things, the biggest shock to both myself and my family, [was] when we spoke to the surgeon and he said that hed… what he was going to do for the operation, removing the lung and obviously the tumour;

And we talked to him, about, you know, the cure and he said, ‘Oh, it’s not a cure. And that was a big shock to us, knowing that I was going to have this radical surgery but still not be cured. And he told me then that without the operation I may live six months to a year;

With the operation it may give me another year and that was a big shock; But we decided, that’s myself and my wife, that it was our best chance of survival, you know; Rather than go away knowing I was going to die within six months to a year; We would go away and give it our best shot and our plan is that I’m going to be the first survivor;

I was too ignorant really to think anything about it. I just know it was a very long corridor that I walked from where the surgeon was to where I had to get in the car and drive home. But I am glad I was by myself because I am a person who can cope with my own emotions better than having to try and cope with somebody elses at the same time.

You know, it must be difficult for people who take others and get bad news. People deal with it in different ways. I mean, now I am amazed that there was so little [information], that’s why I got involved with Ovacome and started taking information into hospitals.

And in the Midlands we have brilliant… it covers about a tenth of the country, and all [of] the consultants, the oncologists, the specialist oncology nurses, they all meet together three times a year and I am invited as a patient representative, you know, and that is wonderful that you are there on the inside, you know. Trusted to talk to the people and say what you think without being critical, but just to be involved. Just to be involved, yes.

I was handed over to a kidney team because there seemed to be protein in my urine. The kidney team did a bone, I’m sorry, a kidney biopsy, and discovered that I had a lot of protein cells in my kidneys and the kidney consultant came to me and said, ‘I think you’re very ill, it’s not a kidney problem as such, although your kidneys are not functioning very well at all, but I’m going to hand you over to the haematology team because I think you’ve got multiple myeloma.

He said this to me in the knowledge that I’d lost my husband only a few months before. He said it to me alone in a hospital bed. I was absolutely furious with him. I said, ‘You, you know what happened to my husband?’ He said, ‘Yes. I said, ‘You can’t be telling me this.

What I meant was, he shouldn’t have told me when I was by myself… behind curtains, in a ward in the hospital with nobody to talk to and I was desperately upset and immediately rang a friend who came rushing up to the hospital to help me and I was, I was… the thing that concerned me the most was not so much that I was ill with an incurable cancer but how on earth was I going to tell children?

I had an 18year-old daughter, sorry 17 at the time and a 20-year-old son who only a few months earlier had lost their father and were facing the prospect of losing their mother fairly rapidly too because my understanding at that time was that I was very, very ill.

One consultant I had actually gave me very bad news one day and said, ‘The chemo doesn’t seem to be working and theres not much more we can do. There is this possibility of this experimental drug but can’t get it in the South West” dah de dah. And then he said, ‘Oh wait a minute, he said ‘I’ve got the wrong file!.

And so that’s a bit of a shocking interview and he just sort of wrote it off as a little joke and the nursing group had turned white and had to sit down at this point and anyway we got through that and I thought it’s time to take charge really here.

And so we started to do a lot of our own research and found out, yes there were other options, there were other things we could do’

I mean on both occasions with both parents I think one of the very worst bits for all of us was when we knew and my mother and father didn’t know. And there was a gap.

Oh you were told before they were told?

Hmm. On both occasions. It is very, very hard to be with somebody in hospital and know and to say nothing.

How long did that go on?

Well it was probably, with my mother it was four days and a similar amount of time with my father.

So the doctors judged it was better to tell you first?

Yes. Hmm.

Do you think that was the right decision?

I’ve heard friends of mine say the same thing, no I don’t think it’s the right decision. And particularly, as with my mother for instance, again a junior doctor was sent to tell her and I was told to come in and be with her when that was going to happen and then he didn’t come. And then she grew suspicious, you know ‘Why are you sitting with me all day?’

Hmm.

And eventually he came sort of last thing and told her and of course she was very upset but [um] no I don’t think that’s the right way to do things.