Elsa - Interview 31

Age at interview: 52

Age at diagnosis: 48

Brief Outline: Elsa was diagnosed with Myelodysplastic Syndrome (MDS) after being treated for thrombocythaemia, a condition that has caused her strokes. Her MDS was treated with blood transfusions, EPO and G-CSF injections and cyclosporin. She is in remission.

Background: Elsa is a retired business owner. She is divorced with no children. Ethnic background: White British.

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Before being diagnosed with myelodysplastic syndrome (MDS) in 2004, Elsa had been living with a myeloproliferative disorder called essential thrombocythaemia for ten years, the treatment for which can increase the risk of developing MDS or leukaemia.

 

In 1994 Elsa had frequent menstrual bleeding and one day she collapsed. A laparotomy showed no gynaecological abnormality but blood tests identified essential thrombocythaemia. She was started on hydroxyurea chemotherapy tablets. The next year she had an eye operation after developing glaucoma, iritis and a cataract. After moving from Scotland to England her new haematologist insisted on a hysterectomy, which she reluctantly had and felt a lot better.

 

In 1999 she had a stroke due to the thrombocythaemia. She was paralysed on one side and had to learn to walk again. In 2003 she had recurrent infections and asthma and was given immunoglobulin treatment, to which she had an allergic reaction. After another stroke she was treated with radioactive phosphorus, which reduced her platelet count and she had to learn to walk a second time.

 

In 2004 Elsa’s gums started bleeding heavily. A neighbour took her to A&E where they tried to take blood from her but her veins collapsed and purple spots appeared all over her body. She was isolated and given a platelet transfusion. She was told she had MDS and would be transferred to a hospital in London for treatment. She didn’t realise at the time that her condition was life threatening. She was treated in hospital for two weeks then treated thereafter as an outpatient, although she was repeatedly admitted because of infections. A bone marrow transplant was out of the question as her history of strokes put her at too high a risk, so for three and a half years she had regular transfusions of blood products alongside EPO and G-CSF injections. After a while her iron levels became too high and she had to have another treatment to reduce them. Her veins collapsed from over use and after having infections at the injection sites she asked if she could stop the treatment. She was then given cyclosporin, an immunosuppressant, after which she achieved remission.

 

Elsa has since had more strokes but each time has recovered. She is still vulnerable to infection and has days when she is very tired but tries to carry on with life as normal. She does voluntary work and lives off her savings and Disability Living Allowance.

A neighbour took Elsa to A&E because her gums were bleeding profusely. She was diagnosed with MDS.

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 me”, I said, “I’ll be fine”. 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.”

Elsa's check-ups have decreased in frequency from every 3 weeks to 6 monthly. She likes her consultant and has great confidence in her and the other staff who cared for her.

How often do you have to go and see your consultant now that you’re in remission?

 

Every six months. It’s wonderful. I’ve never had that before because it’s always been three weeks, every three weeks. So it’s just so lovely. So it was every month and then every three months and now six months is the next time, so fantastic.

 

What happens when you do go and see them?

 

I have my blood tested. I have a lot of blood tests. Although it’s just the one blood test there’s a lot of different cultures that she looks for. It’s a bone and the liver and a lot of other blood tests. And I go and see her and we have a lovely chat and I’m just so pleased. She tells me my results and then I come home and she always says how wonderful it is and she’s so happy that I’m in remission as well, because she’s a lovely person, a really lovely consultant. Yeah, and I’m so pleased.

 

So you get on well with her.

 

Yes, very, very well. I know that I would be able to phone my consultant any time if I needed to or worried about my health, which gives me a lot of confidence in her. The whole team, you know, I can say every ward that I’ve been in, every hospital has been wonderful, has been really good. Everybody is really, really good. They’re there to help, and that’s it.

Elsa had split with her boyfriend before her MDS diagnosis but they got back together when he heard she was ill; she needed his support and he always knew when she needed a blood transfusion.

What kind of impact did your illness have on your relationship with your boyfriend?

 

We had actually split. He was totally devastated but we’d remained friends. And he was devastated but I didn’t know that I was so ill at that time and when he got the call to say that I was there he was at the hospital right away. And he really didn’t think I was going to make it. So, yes, we got back together again. Whether or not that was because I was ill or I don’t know, it was fine. It was good at the time and we’re still friends now and that’s it, yeah. So he was very good. He was really good. And I needed him. I really did need him at that time and he knew it, and yes, he was there. He was at the other end of the phone and he was always, if I was at the hospital, he would go to the hospital with me. Yeah, he was very good. Yeah, very good.

 

Sorry, one of the things he did always know when I actually needed a blood transfusion. Always. When I was on the phone he could always just tell by my voice when I needed it. And it was him that actually sometimes organised it. He would phone the hospital and get them to do the blood transfusion.

When she was first in hospital Elsa's brother and elderly mother visited her from the other end of the country; she saw how worried her mother was so discouraged them from visiting again.

Were you living alone then?

 

Yes, yes.

 

So did you have any support at home?

 

Yeah, I had friends. I had very good friends, or I still have very good friends, should I say. Yeah, they were very good and I’m very lucky. When I actually did go into hospital my family were called straight away and they had to come from Scotland and Cheshire when I was rushed up to the London hospital. But they had to get down as quickly as possible. And that’s when probably I didn’t actually realise at that time the severity of my illness but it was only later on that my mother and my brother actually told me that they were very worried about me.

 

And I think that’s the hardest part. Your relatives see it, they are the ones, I could see when they were coming up to me in the London hospital, my mother, she’s 84, and I had to say to my brother, “Don’t come back up.” I said, “I’m all right in the hospital. Leave me in the hospital. I’m being looked after.” I could see my mother was ashen. And she looked worse than I did I think. I know they were so worried about me and that’s why I just said, “Wait until I come out of hospital. That’s when I’ll need people, when I come out of hospital.”

 

So they did that. They still did come up now and again but not as often as what they were doing because it’s a long trek up there to get to the hospital. So yeah, and you’re going through it yourself so you don’t see it. You don’t know what’s happening to you.

Elsa learned to recognise when she needed a transfusion' she felt weak, emotional, breathless and fuzzy-headed. Eventually they were scheduled fortnightly and continued for over three years.

I did get a lot of support from my local hospital and they had actually told me that I could just go in or phone them any time if I felt ill. And I think it was hard to realise when I was actually going downhill, because when you need a blood transfusion, you’re okay one minute and then all of a sudden you seem to, it comes on you. How I can explain it is I’m fine and then you just seem to go right downhill. But you don’t know what’s happening to you because it’s slow. It doesn’t just hit you just like that. You can be going up the stairs - this was the hardest time for me - If I tried to get up the stairs I couldn’t; I had to crawl up the stairs. I was so breathless with everything and I started to become very emotional, crying, and it’s one thing that I don’t really do. And I used to get weepy, I couldn’t string a sentence together, I’m not doing that well now actually, but then I just couldn’t string a sentence together. It was just a horrible feeling, really horrible. My head became extremely fuzzy not being able to think properly. And those were all the symptoms of me needing a blood transfusion.

 

So then I would be taken in and I would have a blood transfusion and it was just like being born again. It was just so wonderful. The next day wouldn’t be so clever, but the day after that it was just wonderful, I really felt so well again and I felt like a human being again. But it’s very difficult to describe it to somebody that hasn’t been there because you can’t tell somebody those actual feelings, the headaches, the sleeplessness, because you want to sleep all the time but you can’t because you’re too tired to sleep. And I just hope that this will help somebody else that has it and you’ll know the symptoms and the feelings that you get. They are normal symptoms of needing a blood transfusion.

 

And then eventually, in the end they did say to me, “Please just go, have it every two weeks, we’ll book you in to have a blood transfusion.” And the platelets seemed to be doing okay and every now and again I would have platelets.

Elsa sold her business after becoming ill and now does voluntary work for a leukaemia helpline, the Citizen's Advice Bureau, and gives talks for the blood transfusion service and a stroke charity.

So as part of getting your life back you’ve started some voluntary work haven’t you?

 

Yes, yes. I have. I do Leukaemia Care and they’ve just asked me actually, I’ve got a letter from them this week to ask if I would do the phone line, out-of-hour phone line, so for their… And I’ll enjoy that. I will like that. And I do the CAB, Citizen’s Advice Bureau, so I do that and I enjoy that. And if I can help anybody I will. I do talks for the blood transfusion. They’ve asked me. And that involves, it’s nice, that is, I do enjoy that one. I love it. I was petrified. The first time they asked me to do this I thought, “Right, okay. I shall do it.” And it’s in front of 145 people to do a talk. And I thought, “Yeah, that’s fine. That’s okay.” And then, when the day came I thought, “Why, why have I done this to myself?” However, it’s just so fulfilling to actually thank somebody for giving blood. And in this country you do that for nothing. Somebody gives you life. They gave me my life and I’ve got that back. And I just love doing that, so I do it now every six months because it’s an award that they have for giving 80 pints of blood, or 100. And it’s just a lovely thing so I enjoy that. And I do talks for the stroke unit as well, so I do talks for that. So that’s, I suppose, that’s a charity and that’s bringing in some money for the charity, Stroke Busters, our local charity. So yeah, I seem to be doing a lot of charity work, yeah.