Claire - Interview 45

Age at interview: 37

Age at diagnosis: 35

Brief Outline: Claire was diagnosed with myelodysplastic syndrome after experiencing tiredness, aching legs and weight loss. She was treated with chemotherapy and an allogenic bone marrow transplant. She is in remission and has a new outlook on life.

Background: Claire is married with 3 children aged 17, 11 and 9. Ethnic background: White British.

More about me...

Claire was feeling abnormally tired and her legs ached and she was losing weight. After a few months she went to the GP and asked for a blood test. The next day the GP phoned to say she should go to the hospital the following day for a bone marrow test, which she did. She was scared about what might be wrong and said she didn’t want to know until they were certain what it was. Her bone marrow was sent to a specialist hospital for a second opinion, which resulted in a diagnosis of myelodysplastic syndrome.

 

Claire was referred to the specialist hospital where she had further tests and told she would need chemotherapy and a bone marrow transplant from a donor otherwise she could die within about six months. She felt really shocked and during a sleepless night she prayed and decided to accept whatever her journey would be, which gave her a sense of peace.

 

Two weeks after diagnosis she was admitted to the specialist hospital for her 1^st course of chemotherapy and had a Hickman line inserted in her chest. Meanwhile her mother gave up her job and moved in to look after the children and her husband took compassionate leave from work to support her. She remained in hospital for over 3 weeks but had to make repeated journeys to the hospital afterwards for treatment for an infection. After 8 weeks she was readmitted for the 2^nd course of chemotherapy and stayed in for 3 weeks. She was then told that a perfectly matched bone marrow donor had been found. She attended another hospital for total body irradiation twice a day for 5 days. She returned to the other hospital and had several days of chemotherapy during which time she suffered many side effects of both types of treatment and had to be fed through a tube. She was then given the bone marrow transplant after which she became critically ill with pneumonia and developed graft versus host disease on her skin. Claire recovered and was discharged from hospital but had to go back regularly for platelet transfusions.

 

Two years on Claire says she is enjoying life and has a greater sense of self worth. Her outlook on life has changed as a result of her illness and she no longer fears death.

While having tests Claire didn't want to know what her doctors were thinking until they were certain of the definitive diagnosis so she would not be worried by anything unnecessarily.

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 a few 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.

Claire's children visited her in hospital but she felt too tired to give them the attention she would have liked; she had to let go of her desire to organise their lives from her hospital bed.

And the children came, and we had a great elaborate plan of how they were going to come individually so that I could give them attention, but to be honest I felt too tired really and I couldn’t give to them what I wanted to give. And they did come and have some time with me, and lie on the bed with me but it didn’t work out how I imagined it would, and I wanted to control what was going on at home from my hospital bed and I couldn’t do that either, so I had to let go of that and just try not to think too much about what was going on at home.

Claire worried about going into hospital; being shown around beforehand scared her more because it felt alien and she didn't seem ill enough to be there, but she gradually got used to it.

And I was shown around the ward before I went in, which I was hoping would make me feel better and not so scared, but actually it made me feel more frightened really because it was somewhere alien to me and that I couldn’t imagine, and I did see a lot of ill people, and I still thought of myself as not really being that ill.

 

But anyway I went into hospital for my first chemo, I packed my bag and I was told that I might have to be in for up to 6 weeks and that I would feel very tired and that people react differently to their chemo, and some people get ill and some people don’t feel ill, and they have some fantastic anti-sickness drugs now and I don’t think I ever met anyone who really suffered from the sickness, which was to me, I thought I would get really sick, but you don’t. And I went into a ward first, which again I just felt that I shouldn’t really be there, that I wasn’t that ill. And I began to feel the longer that I was there I felt a bit more comfortable with it. The nurses were really friendly and the doctors that were around really explained well what was going to happen. But I was still frightened of actually the chemo and what it was going to do to me. And I didn’t really understand at that point what it was going to involve really.

Claire had many tests before her donor stem cell transplant to check that she was healthy enough to withstand it.

Oh yes, I had to prepare for transplant and I had to be quite well. I couldn’t, you know, if I’d had flu or something, and I tried to steer clear from people who were ill, or an environment where I might pick something up. And I had to prepare, I had to have lots of tests, lung function tests and - oh I can’t even remember half the tests that I had - CT Scan, yeah, it was quite a lot of tests, but they were OK, it wasn’t too stressful really, and by then I was so familiar with my surroundings that it wasn’t a big deal any more.

 

So then what happens, you have your tests?

 

And then you, what, when I had the radiation you mean?

 

Yeah I mean, so they do all these tests, why do they do those?

 

Just to make sure you are well enough for your transplant really. Because the type of transplant I had was, you know, it was the big one and you have to be under 40, is the cut off point, because it is quite gruelling and you have to have radiation, and then chemo, and then your transplant, so you really have to sort of go, your bone marrow all has to be killed off as far as I know, I’m not an expert.