My husband at the time listened to what the doctor said, went sort of grey and then I sent him home because he was due at work the following day, thinking that they would just keep me in overnight and I’d be fine, they’d be sending me home the following day after they’d given me a blood transfusion. The following morning I had a bone marrow biopsy by a doctor that had never done them before from what I can gather. And then following on from that I was told about three hours later that I’d got acute myeloid leukaemia. I was told on my own, which to me wasn’t a problem but my husband did have a specific issue with that.

And I then told my husband what it was and then my mum and dad, my parents actually turned up at the hospital because I lived about forty, fifty miles away from where they live. They turned up, told them the news and then the consultant came to speak to us and basically told my parents and my husband what he’d already told me, that basically it was treatable. There was no reason why I shouldn’t get over it but basically look forward to six months of disruption.

That reminds me that you said when you were given your diagnosis you were alone.

Yeah.

You didn’t mind being alone for that but your husband wasn’t happy.

My husband wasn’t very happy, no. But I just ratified it to myself that if my husband had said something, I didn’t understand how the consultant could console him when it was me that it affected. So I did understand why he’d told me on my own. And then he sort of sat down with me and explained what they were going to do. And then I said, ‘Right, when my mum and dad come later, my husband, can you explain it all to them as well?’ Which he did. He was very, very good and he explained that to them. And then that’s when my husband said, ‘Why did you tell her when she was alone?’ He said, ‘Well because we can’t. You just don’t know how somebody else that’s not affect-, I’m not saying he wasn’t affected by it, but it wasn’t him that they were talking about, it was about me so they couldn’t take on board what he was going to say.

So you think it was actually their decision to do it that way and that it was the right way to do it?

I think it was the right way to do it.

So at least you didn’t have to tell your husband, they did it for you?

I told them what the diagnosis was. And then just said that they were going to get the consultant to come and speak to them as well and me at the same time because you don’t take it in the first time.

So you mentioned your parents. Are they back in India?

They are back in India. They were visiting at the time that I was diagnosed so it was quite a shock for them as well. But they are quite pragmatic individuals so they understood it and they dealt with it well in their way, but well. I mean they didn’t succumb to feeling, Oh my God, what’s this happened They just went about their normal daily lives but they were there for me. They always supported me and they’ve always helped me in whatever way possible.

So perhaps in a way it was fortunate that they were over here when it happened because they might have felt very
Yes
ifferently.

think they at least got a sense of the full picture because had they been back in India it would have all been explained to them over the phone and I think that might have been a little bit more difficult. Here they had the chance of actually going in and speaking to the doctors and seeing for themselves what exactly, what it entails and what the whole picture, rather than just hearing it sort of second hand. So that was good for them actually.

What was it like telling other people about your diagnosis?

It was actually my husband that did it. I couldn’t do it.

You couldn’t because you were ill in the hospital or because you couldn’t face doing it?

I couldn’t face it. Obviously that was the Monday. I had been to the doctor and came back up the road and when the doctor had said that, ‘It looks like leukaemia you need to go to the hospital. And I came up the road and I had to phone my husband. I thought I need to get him home because he’d spoke to me and said, ‘Tell me what the doctor says when you come back. But obviously I’d been in tears down at the doctors and stuff and I just phoned and said, ‘Come home. So he came home and I said, ‘It looks like leukaemia der der der’

Went on the computer. Had a look at a few things. And I says, ‘You need to phone my sister-law. Need to phone. He’s like, ‘Right. Okay. So he phoned my sister-law and told her what was happening, I was going into hospital. No one actually told, well my friend, my best friend, I phoned her. My husband phoned her, spoke to her. And he phoned my sister-law and told her, and then I phoned another one of my close friends and told her. How I managed to tell her I don’t know but I did anyway.

And then the Tuesday once we got the actual diagnosis. My husband came home that night and basically phoned whoever else needed to know. He phoned his dad. Phoned his brother in England just to let everybody know. But it, no it was my husband that did it.

How did you go about telling other people, you know, family and friends and so on?

Very straightforward actually. I didn’t hide behind anything and come out and tell people who visited that I’ve got an acute leukaemia. You know, there is going to be a tough few months, but also that I was going to keep battling. I mean I really for most of the time, there were blips, but for most of the time I was really positive and I wanted to let people know that I was positive. So I’d just come out and say it. You know, well this is where I’m at, this is what I have to deal with, you know, it wasn’t, I sometimes have a laugh and a joke, it seems strange but I did with some of the lads who came round we had a bit of a laugh and a joke about things. And we just coped with it and other times we wouldn’t speak about it at all. Yeah.

What was it like telling your children?

Well, I told them as quickly as I could. First I went to see the haematologist, then I went for the scan, then I went back to the haematologist. And it was only at that stage, when it was all confirmed and everything was absolutely confirmed, that I told them. I asked them both to come and see me and I told them. They, well, I think they were, you know, they didn’t react. But I told them the whole story so that they knew that it wasn’t going to happen tomorrow, and that I wasn’t going to have any treatment and that I would just be carrying on with life. So it wasn’t as traumatic for them as it would have been because we told them the whole story. Whereas when we were told we didn’t know what to think. But when we told them we’d already sorted ourselves out and so we were able to give them an easier picture of it.

And of course they both went home and they looked it up on the internet and that helped them a little. But they couldn’t make up their minds whether to tell the children or not. As far as I was concerned it was up to them. They must know how to deal with their own children. But they both decided that the children should know, so they both told the children. Children never mentioned it to us. Nothing has ever been said but they all know. But nothing, we don’t talk about it, deliberately or otherwise, it doesn’t come up.

Alex’ And to tell you I rang both my sisters over the weekend in north of Scotland and told them. I said, I’m having a nice young lady come up to see me Oh, that’ll be nice for you. What’s she coming for Oh I said, About the leukaemia What leukaemia

Oh, right. So they didn’t know?

Alex’ They didn’t, neither of them.

So how did they react?

Alex’ Oh, one of them did a bit. She’s a half sister and she works in hospitals. She wouldn’t know a lot about it. And my other sister, she’s in her eighties and has very bad eyesight, and she didn’tThey both said, How long have you had it O, I said, About two or three years You never told us O, I said, It doesn’t affect me. I just forget about it Oh, well that’s good So that’s how easy off I’ve been about it. I never bothered about it.

How did you tell your son and daughter about your leukaemia? Or indeed have you told them?

Doreen’ I don’t think we have, have we?

Alex’ I told my son. I told him a young lady is coming to see me.

Doreen’ I don’t think he knows much about it either does he?

This is your son is it? You told your son
Alex’ Son, yeah.

ecause I was coming to see you?

Alex’ Yeah.

Okay.

Alex’ Ah yes. I’ve told my daughter as well.

You have. How have they reacted to the news?

Alex’ They didn’t.

Because you told them it wasn’t affecting you?

Alex’ Yeah.

Yeah. So you don’t think anybody’s worried about you in that respect?

Alex’ No no no.

Good.

Alex’ They don’t worry much about me. Doreen does the worrying.

That’s going back to the fifth of February when I was told etcetera and when I sort of said, Well, I want to go [to Mauritius]. My mother’s seventy. I’m definitely not going to tell her I have leukaemia, and I want to go

And so really I wanted to get that out of the way before I dealt with the leukaemia. I wanted to be able to go back, have my mother celebrate her birthday. She had her four children there. It was a big occasion and I couldn’t blow the bomb in the family at that time. I just didn’t want to do it. And my husband was a wreck, so really in between trying to cope with him and trying to not say a word really. In fact I had to tell my brothers and sisters really so they could take care of him and, you know, keep him away from my mum really. Wasn’t easy but, you know, we went there. We had the holiday with the kids and had the seventieth birthday party.

And I had my brothers and sister tested over there. My sister-law works in import/export of medical equipment with Germany for Mauritius so she had some testing kits ordered and arrived and we carried out the test. And one of my brothers was actually found to be a possible match, which he would obviously have to be retested in London. So it was a bit stressful for my brothers and sisters, and everybody really, knowing what was going on and all that. But I mean, my mother, thank goodness, in her ignorance then, you know, she enjoyed herself, had her kids around her and her grandchildren, and she was, you know, it was all very, very good.

Came back to London and really this is at the point where I said I wanted to be referred to the best centre and taking it from there. I was still in two minds, Do I tell my mum or not I really didn’t want to worry her until I had to worry her. And my daughter was doing her A-levels and I sort of, I didn’t want to sort of upset things really, and my son is very, already very sensitive and everything and I didn’t want to pile this on them. And it was very hard. But my daughter’s very, you know, she susses things out and she kept saying, you know, You sure you’re all right, and things like that. And I told her I was anaemic and that explained the, you know.

So we carried on. We carried on with testing to find out and then something really strange happened then. My brother who lives in the States kept coming over for various tests, blood tests, interview with the doctors, Yes, we’re going to do this transplant. Full go ahead Then I had to drop the bomb on my mother when they actually decided for transplant and I think it was hard for her. Of course it was hard for her. She lives six thousand miles away and really, you know, and she’s told, well, I’m going to have this procedure and basically I might die, andSo my sister had to deal with the fall-out on the other end of the world and then my mother was making plans to come over really, to be over here while I had the transplant.

And at that time my father was poorly ill back home and he was going for his angiography on 16th of November. And I was calling him every day from my hospital bed and started asking him, How is it doing?, and pretending to him that I am calling him from work. I didn’t even tell my brother or my sister or no one. So my brother, and my father went for the angiography on the 16th of November and the report came back on the 18th of November and the doctor suggested that he might have to put an angioplasty for him, which would be a good idea, but apart from that everything was fine. So I said thanks God.

Then the following day I called my brother. He is older than me, three years older than me but we have got very good, I am tight with him, I mean we are very good friends as well. So I said to him that I think I am going to see the doctor because I’m not feeling very well. And he said, What’s wrong? I said, Nothing is wrong. When I run, after five miles I feel breathless.

And I never had any symptoms whatsoever about my leukaemia. That is very unusual because the first thing you have you have out of breath if your haemoglobin is low. That’s what I learnt later. But I was running at that time. I never had that symptom. I never had any symptoms in fact.

So he said, Okay. Let me know what happens. And then two days later I called him and said, I’ve been to the doctor. I think they are asking me to go and check my blood. He said, Okay. How are you feeling? I said, I’m feeling good, hows father?, and this and that, you know. And at that time I already had my first cycle of FLAG-Ida and I was going through a very rough time, nausea and I stopped eating things, like that. But anyway, I never mentioned it.

On 28th of November I called him and he was with the family – he’s got three small kids. I said, Can you go to a quieter place, you know, because I have to speak to you. And then he said, Okay. Then he went upstairs. Then I asked him that, Sit down, you know, because I need to tell you something. He said, I am sitting. I said, Okay. I said, Well, my blood report came and my bone marrow is not working very well. And at that time I knew that back home they don’t have a great clue of what leukaemia is and what bone marrow is. Well that’s, I found it pressure releasing, you know, thing that if you have to, like, drop a bomb, you’d rather make them prepared that bomb is coming. So that’s why I used the things like that to make him realise that something is not good.

Then he asked me, What is this? I said, That’s the bone marrow is the thing which makes your blood, and your red cells and your white cells. He said, Okay. So what’s going to happen? I said, Well, I think I have to be in the hospital for some time. He said, Is it anything serious? Then I said, Yeah, I have got a cancer. And it was nothing on the other side of the phone, you know, for at least twenty seconds. And then I said, Listen. I want you to be strong because you already have a dad poorly ill and you have a lot of responsibilities. (My mother passed away quite some time ago.) So I said, You have to be strong and you have to just listen to me and follow what I say to you and do not go to any corner doctor, do not go to any doctor over there and speak to them about this because I will be giving you all the reviews, all the reports and everything. What you hear from me will be the truth, and t

I think the very worst thing at the time was how to tell the family. The children were I suppose eighteen, sixteen and fourteen or something like that and, being teenagers it’s a fairly shattering time for them too I think, teenagers. And so I thought, Well, I won’t say anything yet because I haven’t got any symptoms or anything And the only person I did tell was a lovely lady who used to help me for a bit because, my mother-law used to live in this house, and she used to help her all the time, and she sort of stayed on and helped me. And she was the only person I told. And that was for about five months.

Well, over that time I suppose the emotional strain of keeping it to yourself and trying to find a time when it was best for them, to tell them, like being on a farm we had sort of hay, then harvest and there was always something going on at the time and I thought, I can’t tell them now, I can’t tell them now And eventually I think it was before harvest and I thought, Well I was thinking if anything happens to me what would they say? What would they think if I hadn’t told them? And I think especially my daughter, she would have been shattered that I hadn’t let her know. Anyway, I thought, I’ve got to tell them So I plucked up courage one morning and told my husband. Well, I think, I don’t know whether it’s farmers or men in general but he wasn’t, he didn’t look as, sound as though he was particularly worried about it. It was, I’m not criticizing him but I think it’s probably just a shock for them isn’t it? And I don’t think at the time he, when he thought about it he could really handle it. So he sort of shut himself off from it and carried on as normal.

And the children were, they were old enough to understand of course but not old enough to sort of be of emotional support or to, I don’t really, you know, it’s just that I think they weren’t, I think they were concerned but, you know, you can’t expect them to really take it in at that age, put it that way.

We made the decision, after we went to the hospital in the January, not to tell our children at that time. I had one of my children was at university, the middle one was at university at that time, the youngest one was a little bit uncooperative at that time anyway, going through that period in life, in their teenage life, as he was then. And my eldest son, I decided if I wasn’t telling two of them it wasn’t fair to tell the others. And we left it, I left it for about six months and then my eldest son asked a question one day. I can’t remember how he put it. We were on our own and we were talking, and my parents had both died of cancer so there were obviously lots, he’d always had, he knew cancer quite well in his life. And he just said something to me about, You’ve been to the hospita, or something, Why did you go to the hospital And I decided that I needed to explain. I didn’t like not telling them, and explained it. But I actually explained it the way that they’d said in the hospital that I had got a good life to lead and that things wouldn’t affect me until I was in my sixties, as I was told then and that I’d cope okay.

We decided, he knew that I hadn’t told the other two and that I wasn’t going to tell the other two children. And then my youngest son, my daughter, my middle child, was still at university and I felt that she still had enough to cope with over the next three years anyway and I really didn’t need to put that pressure on her. And my youngest son, it was probably about 2003, that’s when he made the decision to go to Australia. And before he went I explained what I had and what the circumstances of it were and the life expectancy and everything else, and put it that it wasn’t a great deal and that, you know, Life goes on, don’t worry about it, everything’s okay, I’m still going to be here, I’m going to see everything, I’m going to see your children, if you have childre, and everything else and made it very light an explanation so that I just felt that if he was all those miles away, if something happened he needed to know. Nobody knows if anything is going to happen to anybody and I just thought, Well, if some crisis happened with me at least I could get hold of him and explain why, and he wouldn’t be so shocked over something like that

One of the hardest decisions we had was whether we should tell our two younger children, whether and when. With hindsight I think we got it about right but I could never find anybody who, nobody would give you the answer because it all depends what the children are like, what you’re like, the relationship you have with them, the state of your disease, all sorts of variables. Consultants can’t really advise you on that at all, nor can the support nurses at the hospital, well, they’re nurses. And that was one of the things I found hardest to deal with I think. That was very difficult. And I certainly, I remember talking it over with several of the people, we’d already decided then to tell them but I remember talking it over with people and you just get a range of views on that.

So how did you go about doing that?

How did we do it? I think we just sat them down one day and said, you know, I’ve got this Explained I’d got this disease and I mentioned leukaemia and I said, But there’s many variations of this And, of course, the first thing they say is, Are you going to die You know, they say it almost straight away, and you have to go through it, all the possibilities and saying, you know, just tell them what you know, the truth of it. And we started, we told them when I started the chlorambucil, because I thought there’s a possibility my hair might drop out and they might need an explanation for that. So it was when there was a possibility of some external symptom being there that would, if they didn’t know there was something going on they’d be even more frightened. I remember my sister-law hadn’t told her children, who were a bit older, and they found it, and when I went into hospital, the haemolysis, they couldn’t understand why I wasn’t getting better straight away. So I think it was the right thing to, I’m not saying that she made the wrong decision in not telling them, but I think we made the right decision in telling our two then.

By that stage they would have been how old?

So I haemolysed in 2004, one was fourteen and one was eleven.

How would you advise other people to go about telling their children about cancer?

I think you have to stick as near as possible to the likely prognosis as you can. I think you also have to say that there is always hope that… Also prepare them for what is likely, how it is likely to impact on them, because I think that’s the most significant thing. If you know that you’re going to be in a hospital for certain periods of time there’s certain things you can’t do with them. They need limitations on their lives in, say, travel or things like that, loss of energy, various other things. I think that’s also something to tell them. I mean it’s interesting in a way I suppose, would you tell them that it’s likely to make you infertile? I mean we didn’t tell them that but then we didn’t tell them I was infertile anyway, you know, that I’d had a vasectomy. So what do you need to tell them for? it’s, I don’t know, you know, that’s just occurred to me really.

So as it’s an invisible illness for a lot of the time does that affect decisions about whether to tell people? Who to tell?

Yes, it does. And in a sense it comes back to self-image, I think. You start to think of yourself as an ill person but in fact in many respects you’re not. And you’re concerned other people will see you as ill and make allowances and not include you in certain things when actually you’re able to do almost everything. And that was part of my thinking about, particularly people at work, should I tell them, should I not? But I thought on balance it was better to do it, that I would rather people knew so that if I ever needed to call in any favours, or whatever, then it wouldn’t come as a shock, because I think it’s, you know, you then eventually end up having to tell people and they would feel that you’d kept it from them because you didn’t trust them. And I think that was the down side of it.But I can quite understand and sympathise with people who don’t tell others because why?, you know. If it doesn’t interfere with your life and if you don’t want to be thought of as an ill person, why tell them? So it’s not an easy decision.

How did she find out accidentally? Did you not tell her at the beginning?

I didn’t tell her. I didn’t see any need to tell her at that point. I had had to tell my employer because I felt it was affecting my work, and the confidence leaked from one employer to another employer, which was very, very bad, and she was told by somebody in her school that there were so many people with cancer at a certain place, and she came home and told me and I said, You’d better sit down. It was very sad and I managed it very badly and I don’t know what else I could have done.

I would say to anybody with CLL if you don’t have to tell your employers or anybody but your immediate family that you’ve got a cancer, even in this day and age, it’s probably best not to. Even your employer, if it’s not affecting your work and with many people who are diagnosed they’ll be diagnosed on a routine blood test, they’ll be told about it, to them it’ll be a shock. it’s not affecting your work. It probably won’t affect your life expectancy. Who needs to know? Perhaps your immediate family. There are people out there who find cancer abhorrent and find people with cancer very upsetting, and it can work against you in the workplace. it’s a terrible thing. I hope it changes even faster than it has been changing, but it’s still there.