Beverley - Interview 19

Age at interview: 54

Age at diagnosis: 47

Brief Outline: Beverley was diagnosed with chronic lymphocytic leukaemia after complaining of tiredness and joint pains. She has been on 'watch and wait' for seven years but her symptoms are getting worse and she expects to start treatment soon.

Background: Beverley is a retired medical secretary. She is married with three adult children. Ethnic background: White European.

More about me...

Just before Christmas in 1999 Beverley went to her GP because she had aching joints and was feeling very tired and lethargic. The GP did a blood test and told her she had a kind of leukaemia and referred her to a consultant. After Christmas she saw the consultant who explained that it was chronic lymphocytic leukaemia and that she would be okay for a good few years yet.

 

She started on a programme of ‘watch and wait’ involving reviews of her condition every six months. In 2003 she was advised to retire from work due to other medical problems that she had that were unconnected with the leukaemia, but found that this did relieve her symptoms somewhat.

 

In 2007 it was suggested to her that she could have a bone marrow transplant at some point in the future and was invited to ask her siblings to have their bone marrow tested to see if any of them matched. Unfortunately neither of her sisters were a match so an allogenic bone marrow transplant is out of the question but there would be other treatment possibilities. Beverley’s white blood cell count has risen quite high and she has started to get chest infections so expects to start treatment in the not too distant future. Meanwhile she paces herself in order to achieve the things she wants to do.

Beverley didn't want to burden her children with her CLL* diagnosis initially and told them separately at different times when circumstances dictated.

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 hospital”, 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 children”, 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.”

Though in general Beverley prefers to handle things alone she has found it valuable to have her husband with her at recent consultations to help take in all that is said.

I’ve always been a person that I’ll deal with things on my own anyway. I’ve dealt with hospitals and I’ve never ever asked anybody to help, to come with me. But when I was told to attend the hospital after the consultation at Christmas with the GP, and that I would receive the hospital appointment in the January, my husband did come with me for that consultation. And he didn’t attend any of the other consultations up until the last year or so. Now that things have started to become more of a problem, he has started coming with me to the hospital just to be there with me. And yet amazingly enough when I was told last October that possibility of transplant, that was the one occasion when he couldn’t come with me and I was on my own again so… I deal with situations on my own but I do think that it’s worth having somebody else there because they’re listening. You’re trying to take it in and you do take a lot of it in but you don’t take in all of the things that they’re saying to you. And it’s very important to listen to all that’s being said. And I think that other pair of ears are essential to hear what’s going on.

A couple of days after being given her CLL* diagnosis the reality sunk in and Beverley thought of more questions but didn't know who to ask. She spoke to a haematology nurse and medical colleagues.

Then after the Christmas I received the appointment through to go and see a consultant at my local hospital who again, did more blood tests and said that I had CLL, chronic lymphocytic leukaemia, and that at the moment, everything, I would have joint aches and pains and tiredness but I probably wouldn’t suffer too many symptoms for some time, that life expectancy was about fifteen to twenty years but I wouldn’t have any problems for a good few years yet and that I’d live to see my grandchildren. They were all the questions that I asked and, you know, am I ever going to see my children have children? How long am I going to live? They’re all the questions that everybody wants to know but he just said that, “Don’t worry. This will all go okay and nothing will happen until you’re way into your sixties.” And I’m thinking, “Oh, that’s miles away and I’ve got plenty of time to think about these things”, and came away.

 

I must admit that after a couple of days the actual diagnosis then hits you because you then realise that you have got a form of cancer. It isn’t just that you’ve just got aches and pains, there’s something going on in your body. And you then start thinking quite morbid thoughts at that time of, “Maybe I ought to do this, maybe I ought to do that.” But it gradually eased down. I had lots and lots of questions that I wanted to ask but I really just didn’t know who to ask. Somebody suggested that I contacted the hospital again and speak to the haematology nurses, which I did and one of them was quite helpful but the questions often come up when you’re not there and they’re not available and you don’t like to disturb them, and things like that. And I tried to do as much research as I could by looking on the internet and, because of my profession anyway at that time, I felt that I could sort of ask my employers what they thought about things, and they just sort of said the same thing, “Well, you know, you’ll be fine for a long while yet. It’s very early diagnosis.”

 

And I continued like that for I think after about three months things gradually started to sort of subside, the worry started subsiding and you realise well, life was carrying on the same and that you weren’t go to die that minute, and things like that.

If Beverley does too much on one day she feels shattered and can't do anything on the next, but over time she has stopped berating herself and learned to accept her bad days.

What happens if you get it wrong and you overdo it one day?

 

I’m absolutely shattered and can’t do anything. I do do it and I know that I do it and I know that I’m saying to myself, “Well, that’s your own fault”, and my husband saying to me, “You shouldn’t have done it. Why did you do that? Why didn’t you wait for me to do this?” But I then just accept that day and I may not even get dressed on that day. I may just lay around all day in my dressing gown with the heating on if it’s winter time, with the heating on. I’ve noticed that the sun and warmth help the joints, which they do with everything. They don’t help the tiredness obviously and I’ve noticed that I now start becoming breathless as well with it but I think that’s because of the white cell count and the red cell count altering that the breath, you start getting a little bit breathless with the leukaemia.

 

So it is a case of just accepting. It’s awful to think so but you just do have to accept those days. It’s taken me eight years now to get to that point of saying, “Right, this is a bad day. I’m going to just accept this really bad day.” But I don’t tell myself off for having done the whole garden the day before or being out in the garden the whole day, because I enjoy my garden, I enjoy doing something like that. Or if I’ve gone out with one of my children somewhere and gone, I don’t know, if we’ve gone shopping or something like that, yes, I know that that day, by the time I get back it’s going to be, the following day will be an awful day, but I enjoyed that day so why worry about it?

Beverley's youngest daughter was angry that she had been kept in the dark about her mother's diagnosis.

We still left it that my daughter didn’t know. And then in fact I didn’t tell her until last year, which was very emotional. I kept putting it off and it was my fault, I put it off. She was at university, then starting her first job, had pressures at work, and so forth. And I had to go to a hospital appointment and she said, “I’ll come with you.” And I said, it wasn’t for the leukaemia it was for something else, and I said, “Okay, yes you can come with me but before we go I need to tell you something.” It wasn’t the best way to tell her because it was half an hour before we actually left the house. And it was an emotional time because we’re very close and she wanted to know lots of answers. She was angry at me, very angry for not telling her. And maybe I should have told her but I just felt that she really didn’t need that in her life and I was coping quite well without any problems and, as I’ve said, it’s only just now that it’s just starting to really be a problem in this last year or so.

 

So she and I still, and even now I find that anything that goes on, if I say that I haven’t done something one day or I didn’t want to go somewhere, it’s always, “Well, are you all right? What’s wrong? Well are you sure you’re okay?” And you don’t really want that all the time going on and I didn’t want her worrying like that all the time. She hopefully will get better at it but I did promise that I would not keep anything from her.

Beverley's sisters felt anxious while waiting to learn if they could donate stem cells. Her children were upset that they could not be tested.

My sisters were tested before Christmas and it took two and a half months before they receive the results. You’re not allowed to receive or be told the results in any way. It’s up to the person concerned, whether they are possible donors or not, to tell you. My sisters contacted me and both told me that neither of them were possible donors.

 

So I now know that I haven’t actually got a family donor. And I went back to see the consultant again at the hospital who explained that she would wait until things got any worse before putting me on a donor list.

 

The one thing that came out from all of them [her children] was that why if I could have a transplant why can’t they be considered? And because of genetic problems they’re not allowed to be considered as a possible donor. But they obviously feel that it’s something that they would love to do and they would all love, they all have said the same things, and they obviously feel quite hurt that they cannot be considered. I had the same reaction from my best friend who wanted to be tested but they’re not allowed to be individually. It’s only siblings that are allowed to be tested individually for a possible transplant. If friends or even if the children wanted to be tested they have to just go to an Anthony Nolan session and be tested via Anthony Nolan sessions, and then they could be selected for anybody. So they’re not considered for their own family. So yes, it was quite a hard time telling them really.

 

The one person that I know would possibly have been, they actually say that one in three siblings are possible donors, and I actually had a third, an elder sister who died quite a few years ago, and I know, I’ve got a gut feeling that she would have been the possible donor if anybody. Because it just, I think that’s fate. But you always look at things like that afterwards.

 

It was hard but I made it quite light with my sisters as well. And yet both of those are both qualified medical personnel so they know the implications of all of it. They became quite anxious with wanting to know the results, to the point of actually ringing my local hospital to see if the results were in after two or three weeks, and yet they’d been told quite clearly that it may take two to three weeks, it may take up to six to eight weeks to get the results through, and with it being the Christmas period I’d sort of said, “Well, it’s going to take even longer.” And they phoned the hospital after two to three weeks just to see if the results were in, so they were quite anxious about it.