Okay I was diagnosed with chronic myelogenous leukaemia when I was 20 years old. At the time I was attending university and I had come home for the summer holidays. And whilst I was at home I had kind of a lot of the classic symptoms which, you know, at the time I think everyone pegged down to student lifestyle so it had kind of escaped everyone’s attention.

But I’d lost a lot of weight and just didn’t have a very large appetite and was quite pale and with bruising quite easily and, you know, things like this. But it wasn’t really ringing any alarm bells. And then I had decided to try contact lenses and was really struggling with them and realised that there was a blind spot in my vision. And my mother said to me, You must have scratched your eye when you were putting in a contact lens. So I went to the optician. He said to me, You haven’t scratched your lens, a blood vessel has burst in the back of your eye and this is really unusual. So I want you to, not even go home, go straight to accident and emergency and find out what has happened because I think that this could potentially be something quite serious.

So I went to the hospital and had lots of eye checks and things and they said, We’ll take a blood test. Come back tomorrow. So my parents took me back to hospital the next day and I remember in the car thinking to myself, Oh I hope I don’t have anything like diabetes. And then saying to myself, don’t be silly. It won’t be anything that serious.

And we got to hospital and that was when I was told that the reason the blood vessel had burst in the back of my eye was because my blood was very thick and sticky. And the reason for that was because there were so many white cells in my blood, which meant that I was suffering from leukaemia, which it was very difficult to hear. And I’m usually quite a composed person and what have you, but being so young as well and, it was both difficult for me to accept.

Yes, it was August 2006 and I’d had some swellings all round my neck and I’d had them for a couple of months, they didn’t hurt. And I thought nothing of it and I was going on holiday in the November and I thought, Well, I’d better get them checked. So I did. I went to the doctor and he made noises, hmm hmm, and I thought, Well, that’s not good. So he drew a blood test on the Friday, which he did, and the nurse said, Oh, it’ll probably be about Thursday before you hear. Well, Monday morning about 20 past 8 the doctor rang and said for me to go in and see him and he’s going to make an appointment to see a haematologist at my local hospital. And that appointment came for that in about two weeks.

The next day got a phone call from the doctor’s surgery to say can we go up to see him. And still we walked up the road perfectly happy, not a thought of any problems. And I sat down in the doctor’s surgery and he held my hand, so I thought, Oh, this isn’t going to be good news. And he said, I’m really sorry Dianne’, he said, But you have leukaemia. And the shock of that, I’ve never been ill in my life before. The only time I’d been in to the hospital was when I’d fallen off and broken my ankle horse riding, which was a long time ago. Never had any sort of problems at all.

And then everything seemed to happen very quickly because he said, You’ve got acute myeloid leukaemia. You need to be in hospital straight away. I’ve booked you a bed. Go up to the hospital and just go home and pack a few things in a case. And it was that quick. And so after a short time my husband and I walked back to the house completely sort of shocked, we didn’t really talk to each other, we just sort of, well we were just in a state of shock really.

So that’s when it all took off. Eventually I went to see my GP, which was a Thursday, and she said, Okay. I’ll try and we’ll do a blood test just to find out if everything’s okay but I’ll give you some of those pills to sort of stop the heavy bleeding and see if we can build you back u, kind of thing. I was really, you know, Okay, back to wor, kind of thing. And on the Saturday my son, it was his fifteenth birthday, and I had a load of fifteen-year-olds running around the house, and the phone went. My husband was at work, and it was my GP, who I knew pretty well because I had to deal with her through work as well, and she said to me, she said, Elizabeth, there’s something very wrong going on here. I’ve made an appointment for you at haematology on Monday. I’d like you to go And she knew I was going to say, Well, I can’t go. I’ve got a meetin, you know. And I sort of tried to get more info out of her and she was very reticent. She didn’t want to tell me anything on the phone. She knew I was already quite aware medically of things.

So I said, Okay, well what’s my blood count And there was a big silence on the other end, and yet eventually she told me my white count was 98, and I thought, Okay And then she sort of said, Yes, but your platelets are over 2000 And then I started, alarm bells started going in every direction really, and she said, And the worst part your haemoglobin is 7, and really I don’t know how come you’re having a fifteen-year-old kid’s party with a haemoglobin of 7 So anyway I said to her, Worst case scenario She said, Please don’t make me do all this on the phone. Go to the hospital and you can ask all the questions but really we need to sort this out and you need to go

And in my head straight away I thought, Right okay, severe anaemia, severe anaemi, then, Hmm. I got the medical encyclopaedia out, because in those days the internet wasn’t quite what it is today, and then the word leukaemia started appearing. And I thought, Leukaemia, but it’s only sort of children who have leukaemia, it’s not m, and, And leukaemia people are very thin, very white and very bald, you know, it’s not me really. And how could I possibly have leukaemia and do all the things that I do? it’s, you know, it’srdquo; So I discounted it. I sort of thought, it’s impossible. It can’t be me Anyway, then I rang my husband, I said, Well, you’d better come home because there’s, you know, something not right So we spent a weekend really trying to think, What is it and trying to sort of hide it from the children of course and, you know, my daughter was, was she doing GCSEs or A-level? She must have been doing her GCSEs, and soNo, she was doing A-levels. It was hellish weekend really.

Matters came to a head when I went to the gym and apparently, my heartbeat was very elevated, so after, that had been like that for a few months and I’d given up caffeine and all the normal things one does, I went to the doctor and just said, I wasn’t really concerned, I thought I’d been overworking, could they just confirm that I had been overworking? And the locum doctor very kindly said she’d give me a complete work-up. She agreed with me that I was probably working too hard, perhaps a bit stressed. My father was extremely ill at the same time, which wasn’t helping things. And she gave me a full work-up and when I went back for the blood results she was obviously very agitated.

She referred me to a haematology clinic and unfortunately it took well over four months for me to get an appointment, by which time I was concerned because my fatigue had got worse, I’d had an episode of bruising and bleeding and I had a fairly good idea what the blood results that I’d seen on her screen actually meant, so I was concerned. At that time I didn’t know there was any difference between chronic leukaemias and acute leukaemias. When I finally got to see the consultant I had more bloods done. There was another five week wait before I went back and he explained that I had a condition called chronic lymphocytic leukaemia.

And I also didn’t really want to know what he was suspecting that I had. I really didn’t want to know because I didn’t want to know because I didn’t want to be worried about something I didn’t need to be worried about. So I said, I don’t want to know what you think I might have until you know for sure. So he agreed to that and of course my husband wanted to know every last detail what it might be and everything else, but I really didn’t want to know. So he said, Come back in afew hours and I might know more.

I went bowling, which was really a strange thing to do seeing as I was so tired. And the consultant said it was a really strange thing to do as well. We went to the marina to go bowling, and I remember, just to take my mind off it really, and I was in a daze and I just couldn’t believe that within a, from a few hours before I might be really seriously ill. I’d suspected I might be really seriously ill, and yet I was still standing and my life, you know, it was really odd

So we went back a few hours later, and the consultant said he had an idea of what he thought it might be. And I said, Please, please don’t tell me, I don’t want to know, thanks, because I don’t want to worry, unless you are a 100% sure. He said No I’m not. I’m going to get you seen at a specialist hospital, and I’m going to send your bone marrow to a specialist hospital. So within a week, I think he did tell me actually that I might have leukaemia, yeah, but it took a few days, and I was getting cross by then because he was a bit, he didn’t really want to tell me, I felt, even though I’d said I didn’t want to know I then got frustrated. And my dad came over to look after the children and I went with my husband and I said, I can’t wait any longer, I do need to know now. So I needed that time just to get my head together a bit. And he said I think you’ve got Myelodysplastic Syndrome, which is a pre-leukemia but it’s, you will probably need some chemo and a bone marrow transplant. Oh don’t worry because I know somebody who is 2 years out from a bone marrow transplant. And I remember the only thing I asked was, All I want to know is will I see my grandchildren?’ And he said, yeah, I think you will. But he seemed a bit nervous. I don’t know, I can’t really explain.

But however, in 2004 in the July I was at home and I noticed that my gums were bleeding. And my gums, they weren’t just bleeding, they were pouring with blood. And I did phone the NHS Direct because it wasn’t long after I had been out of hospital from having the stroke. And I did phone them and they did say to me if I could stand I didn’t warrant an ambulance, so I didn’t bother with an ambulance, I didn’t think anything about it. I just thought, Well, I’ll just get on with it

The little girl from next door came in, and she was ten, I opened the door to her and she just burst into tears because I was just flowing with blood. And she went running home to her mummy and said, you know, told her mother whatever, and then her mum came to the door and she said, Elsa, I think you should go up to the hospital. I’ll take you up to the hospital So I did go up and I said to her, don’t worry about m, I said, I’ll be fin. I said, I’ll probably just go into A and E and they’ll do whatever and then I’ll be home. I’ll get a taxi home so don’t wait with me. don’t be troubled So anyway I went in and not realising that I was so ill. And they took blood from me and when they tried to take blood from me they couldn’t get a vein and the whole of my body just went purple like dots all over me, a purple dotted body as I called it. And I mean I was still laughing about it and still not realising that I was just so ill. And anyway I was put into a cubicle. I had to stay there. I was isolated.

And then the next morning, right away they got me onto platelets. They got me a platelet transfusion and I was taken into another ward and isolated again. And then the next morning they came, they did a biopsy and very quickly I got the results. The consultants came to me and oh, they were just so lovely. And they said to me that I had MDS. Well, they did a bone marrow biopsy then and then they came back and they said, We’ve got good news for you. it’s not acute leukaemia. it’s MDS that you have And I said, Oh, that’s fine then. I can go home. After you’ve treated me I can go home And they said, No, I’m sorry but you’re very ill. It means that your bone marrow has collapsed and you’ve got no cells in your bone marrow. And we will have to send you up to a London hospital

But this is going to sound really soppy, and I’m not a soppy person, but I remember when they told us that I had leukaemia and that it was quite serious and, you know, with my age and all that sort of stuff, and they’d said to me, ‘Do you want to know what your chances are?’ And I said, ‘No. I don’t want to know. He says, ‘It’s just a lot of patients ask that and we can. Basically what he was trying to say was if you ask me, ‘Am I going to live?’ he can’t say yes and he can’t say no. They don’t know, right. And I think that was his way of couching it. And I said, ‘No I don’t want to know because if you tell me there’s a seventy per cent chance that I’m going to relapse then I’m going to be worrying seventy per cent of the time and I really don’t want to do that. You know, I, whatever, if I’ve only got thirty per cent I want to make the most of that’, I says, ‘But I really don’t want to know. I don’t think it solves anything. I don’t think it helps anybody.

You always say to yourself, ‘I wonder what you’d do if someone told you you had so and so to live?’ You always talk about things like that, just say, when you hear of someone dying, you think, you say to your friend or yourself, ‘Oh I don’t know how I’d be if I was told I only had so and so to live. I can’t explain it. I know when I was first told and they let me have a little while to discuss what I was going to have done, I remember saying to my niece, ‘I can’t’, I said, ‘I don’t believe I’ve only got six months or a year, whatever. I said, ‘I don’t feel like I’ve got it. So she says, ‘You’ve not. You’ve not. And I don’t know why, I just never accepted I’d got that long to live, or I don’t want to know, put it like that, I’d rather not know. I know they have to tell you but if you’d asked my opinion, ‘Do you think it’s better to tell them?’ In my opinion, no, but then you’ve got other people say, ‘Yes I’d like to know to put my things straight.

We all know we’re going to die, as I said to someone, because someone said, ‘Well we’ve all got to die, Thelma. I said, ‘Yeah I know and I’ll accept that. I said, ‘And we’re all lucky that we’ve been on this earth as long as we have and gone through life with no illness. I said, ‘But we don’t want to know when we’re going to go. I said, ‘You could not wake up tomorrow but when you’re told you’re going to die, every time you look at the next day you think, is this my last day?’ But I said, ‘When you don’t know that you carry on going to work, doing things. You don’t even think about it. You think about your next year’s holiday. I said, ‘But when you’ve been told you’ll die you can’t seem to focus on next year’s holiday. I know you should do but you can’t. And when my sisters say, ‘We’ll do so and so, I do say, ‘Yeah we will. And I think. They say, ‘And don’t say it, that you won’t be here. And I think, ‘Oh I hope I’m here for it. And I think, ‘God willing’, but

It was in the June that I went to the local hospital, saw a consultant. It was a very laid back interview. Nothing what I expected. I think I expected to have to be rushed into hospital and have treatment straight away. It wasn’t like that at all. He explained about the leukaemia I had was chronic lymphatic cancer, lymphatic I think. It wasn’t acute. It wasn’t dangerous. It was something that would progress but it wouldn’t necessarily kill me, it would be side effects of it.

So that was something to take in. I think at these stages you don’t take everything in at once. You can’t remember what people said. You come back from these consultations wondering if you’ve heard everything. Basically, it’s, as I say, a chronic condition which would never go away. Once you’ve got it you’ve got it but they can treat it and you can go into various remissions and I’m in one at the moment.