Dianne - Interview 03

Age at interview: 53

Age at diagnosis: 50

Brief Outline: Dianne was diagnosed with acute myeloid leukaemia after experiencing fatigue with an odd sense of a weight in her stomach. Four cycles of chemotherapy put her into remission. She was also given a monoclonal antibody called Mylotarg (gemtuzumab).

Background: Dianne is a retired HR director. She is married with no children. Ethnic background: White British.

More about me...

Dianne felt a peculiar type of tiredness with a constant weight in her stomach. She went to her GP who sent her for a blood test. The next day she was called to her GP’s surgery to receive the results and was shocked to be told that she had acute myeloid leukaemia and that she should go home to pack a few things in a bag and go straight to hospital where a bed had been booked for her.

Once in hospital her health deteriorated rapidly – her skin turned black from internal bruising, she was doubly incontinent and unconscious much of the time. She was fitted with a Hickman line and started on a course of 4 cycles of chemotherapy, which immediately made her feel better. She was told she was in remission after the first course but continued to be treated. She was in hospital for 6 months, in isolation most of the time, but was let out every 4 to 5 weeks for a few days respite.

 

She had a bad bout of sickness following her first dose of chemotherapy when she was mistakenly not given any anti-sickness medication. Other side effects included hair loss, rigors (feeling cold and shaky), fatigue and joint pain, the latter two still occur sometimes. One of her treatments was a monoclonal antibody called Mylotarg (gemtuzumab) which was given as part of a clinical trial. After her last treatment she was given G-CSF injections to boost her blood cell counts so she could be discharged sooner to look after her husband who had had a heart bypass operation while she had been in hospital.

Although Dianne was unlikely to have children at age 50 she still felt a sense of loss when her treatment brought on the menopause. She found other people's attitudes unhelpful.

How do you feel your illness has affected the way you feel about your femininity?

 

Ah now that’s an interesting point, because with all this going on I hadn’t given a thought to my fertility or my femininity, and after my treatment I had started to feel a bit, hot flushes and things like that, and I was talking to my consultant and he said, ‘Oh well’, he said, ‘Well you’ve just gone into premature menopause’, he said, ‘Because obviously the chemotherapy has fried your ovaries.’ And it was like he’d hit me physically across the face. I was so shocked, and I don’t know why I should have been because obviously I do know that chemotherapy affects your fertility, but it was the way he said it and the fact that I hadn’t even given it any consideration with everything going on, that I was absolutely astounded.

 

And anyway I ended up going to a gynaecologist who was absolutely lovely and she dealt specifically with cancer patients who have gynae problems afterwards. And she was wonderful and got me through it because I did feel different because I was no longer fertile, and it’s an extraordinary sensation. And it did make me feel that I’d lost something. There was a sense of loss, and because I haven’t had children people just boo-hooed it and they said, ‘Well you weren’t going to have children anyway so that’s all right then isn’t it.’ And that wasn’t very helpful because I still felt I’d lost something and I was different. And maybe I wasn’t going, well I wasn’t going to have children, but the fact that you no longer could, not the fact you couldn’t, and the fact that you had passed a big milestone in your life made an impact.

The day after her blood test Dianne was phoned by the GP's surgery and asked to see him about the test results. She was told the diagnosis and admitted to hospital the same day.

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.

Dianne had many bone marrow biopsies done and says you have to be brave to keep having them willingly. After 3 or 4 under local anaesthetic she had the rest with sedation, which she recommends.

No, I think initially, when I was again on this clinical trial and I was having bone marrow aspirates, which are again things that people love doing under local anaesthetic and I’d just like a few doctors and nurses to have them once under local anaesthetic, and then maybe they’d take a different view. And you can have a good experience with them and you can have a really bad experience with them, and I was giving samples of bone marrow aspirate for probably a year after I’d left hospital for the clinical trial.

 

But they became very difficult because when they cause you a problem, when you have a lot of discomfort with them it takes a lot of to go and have the next one. And I had some bad experiences with them so I talked to my consultant and I said, ‘Well look, I think I’ve had enough.’ And even though towards the end I was being sedated with them, I think it’s just one of those things. I haven’t actually met anybody who says, ‘Oh whoopee, how pleased I am today I’m going to go and have a bone marrow aspirate.’ Everybody I’ve spoken to hates them and they are unpleasant.

 

Did the sedation make a significant difference?

 

Yes providing they’re done properly, yeah. And I would certainly say to people, do ask if you can have sedation, you know, don’t be afraid to ask to have sedation because it does make a big difference. Apparently you’re conscious all the time but it takes your short term memory away so you don’t actually remember having it done at all. And I had the last six of mine I had all under sedation and it made it a lot easier. I felt that after three or four experiences of it and that horrible sensation, not only of the pressure when they drill into your bone, but that sucking sensation. It’s indescribably horrible.

 

And I think you have to be very brave to keep going and having those willingly, and so the more support you can have to make it easier, I think the better. And it’s interesting because some of the doctors, you know, because you get a different doctor doing it every time you go there as an out-patient and they say, ‘Oh it’s okay, I’m really good at doing these.’ And I’m thinking, ‘Yeah, you’re just like the guy who put my Hickman line in. You’ve probably never had one yourself.’ They can be done well, obviously, but they are an unpleasant procedure. So I’d vote for sedation every time.

Dianne took responsibility for flushing her central line and cleaning the insertion site and had no infections. The small scar from having a line inserted didn't bother her.

And how did you feel about having that Hickman line all that time? Did that bother you?

 

The Hickman line was a constant reminder really because you have to make, I found with the hospital that I was in, they were very keen to make sure that you took responsibility for your own Hickman line. Now some people can do it and some can’t but I would flush my lines to, because I had a Hickman with three tubes coming out, some only have one, some only had two. But if you keep it clean you’re less likely to get infections. And of course, you have a little hole here where the tube goes in and that never really heals, it’s just a tiny little hole where the tube goes in. But it’s really important to keep that clean and so I would do that myself with the wipes and things that the hospital gave you. So every day, two or three times a day, I would just keep that clean because that’s how the infection sometimes can get in. But it can be quite painful because it is like an open wound really and you do get left with a scar but there’re far worse things that can happen to you than just having a scar.

 

But I found it was quite useful because particularly when I was home for four, five, six days. Every day you need to clean the lines, change the valves on the lines, and I was quite happy to do that. It’s not for everyone, you know, if you don’t feel like doing it then that’s absolutely fine, you can get a district nurse in to do it. But for me it just felt that I was sort of managing it and that was fine.

 

Important thing is to keep it well taped up so that it doesn’t stretch the little hole, because that can be painful if it’s not properly taped when you sleep you can move it and then you wake up because it’s really hurting so. But as I say, for me it was, I’m not squeamish at all, for some people it might be a bit squeamish but you do get used to it.

Dianne asked her husband to bring in antiseptic wipes and she used these to keep her isolation room clean; she managed to avoid catching any infections.

I think that some of the things that I’ve found that I had to manage for myself even though you weren’t feeling too well, was that there is a need, particularly with AML and any leukaemia where you’re going neutropenic, to have absolutely spotless hygiene. I got through the whole six months without any ulcers, without any major infections, and that’s because I’d asked my husband to buy a wipe for every possible type of occurrence. So, you know, I mean the hospital were very good as well because they wiped the trays down and when you’re given your chemotherapy everything is sort of sterile, but I think just around the general room and everything that I touched, everything was kept clean.

 

And it really did seem to make a difference because I know a lot of my fellow patients were having all sorts of difficulties and I just think that with all the things that you hear about hospitals, the more that you can do for yourself in maintaining that cleanliness, it did seem to help me anyway. And I’ve never been that particular in terms of worrying too much before, having been brought up in the country, so it did seem to help anyway.

Dianne injected herself in the abdomen with G-CSF to speed up her recovery from chemotherapy so she could get home to look after her husband after his heart surgery.

I mean at the end of my chemotherapy I was even giving myself injections in the tummy, so it was fine.

 

What did you need those for?

 

That was really to build up the blood chemistry after the chemo just to give you a boost because sometimes it takes longer than others to get your neutrophils back up to a level where you can actually come out of isolation. And my last dose of chemotherapy - my husband, who had never ever been ill before, but that same summer had felt a little bit breathless and he thought, ‘Well this is a little bit odd’, so he went to the doctor, had a check up and went through some tests and ended up having a triple bypass - so he was in one hospital, I was in another and the only way we could talk to each other was through our staff nurses. So he was having this heart operation, I was having my last lot of chemotherapy, and I felt I needed to get out earlier because he was coming home. He was bed-ridden and in a terrible state. So I asked if the hospital could do something to help me get rid of my neutropenia quicker so I could be home and look after him for a few days. And he was a terrible patient he really was. So they were the injections in the tummy just to bring you back up to normal chemistry quicker.

 

Is that the stuff called G-CSF?

 

Yes I believe it is, yes.

Dianne had one bout of vomiting during chemotherapy when staff forgot to give her the anti-sickness drug; the sickness was worse than anything she had ever known before.

So other side effects you mentioned were sickness, nausea.

 

I was very fortunate, if I tell the story, I only had one dose of appalling sickness and that was because I was given my first chemotherapy at a shift change-over, and they forgot to give me any anti-nausea tablets. So I can’t describe the degree of the nausea. I’ve never experienced anything like it and it’s absolutely horrendous. It’s not like anything anybody’s normally being sick, it’s fifty times worse. And the staff nurse came to me the next morning and said, ‘Dianne, we’re really, really sorry that you’ve had this problem but you weren’t given your anti-nausea.’ And I could have hugged her because I was so grateful that she told me the truth because I thought if I’m going to be as sick as this every time I can’t do it.

Despite being in remission from her AML* Dianne still suffers from joint pains and fatigue. She says that other people don't understand how tired she feels because outwardly she appears fine.

And was it the case that you never felt well enough to go back to work, or what was your reasoning?

 

To be perfectly honest it was, I knew I haven’t got, I still don’t have the energy levels to do a full day’s, no to do a full week’s work. I mean I could probably on a good day get into town on the tube and go to work but the next day I’d be in bed. I mean there’s some days when I actually have to use sticks because my bones hurt so much, and yet to look at me today you’d think there was absolutely nothing wrong with me.

 

And I think that’s another thing, that’s another point actually that a lot of people with leukaemia will tell you that they look fine but they feel, I can’t say the word on camera, but they feel really bad inside because of this dragging fatigue. And to look at you, you look perfectly normal, absolutely nothing wrong with you, and again people have said to me, and I’ve found this myself, that the number of people who’d come in and say, ‘Gosh you do look well.’ And you’re feeling so ill inside, but outside, your face, you know, you smile and you look normal, you’ve got your hair back and everybody thinks you’re fine so they just bypass the fact that you’re still actually very ill. And it’s finding the way of getting that across really.

Dianne gained weight after her leukaemia treatment made her tired and inactive; she is determined to lose weight with help from a dietitian and an endocrinologist.

What about changes to your lifestyle? Have you thought about any changes like diet or exercise?

 

Since I’ve left hospital I’ve put on a lot of weight. Because with the fatigue you just can’t keep on the move like I used to, and so I’m seeing a dietician and I’m now, with a bit of a break at Christmas and New Year, I’m now really concentrating on my diet in order to lose weight because, though I was never born to be slim, I’ve always been well built I think is the expression, I think that having come through cancer I don’t now want to die because I’m obese. So it’s given me a real sense of focus to get the weight off.

 

I’ve put on oh quite a lot in the time since I’ve left hospital and I’m feeling well enough now to actually deal with it. It takes quite a long while to get over that type of intensive chemotherapy and to adjust to a different lifestyle, because I’ve stopped working, because of the fatigue, so everything’s different and you’ve got all this adjustment to make. But no, I’m totally focused now on working with, I’ve got a consultant and a dietician who are helping me, so that’s really nice. I’ve got an endocrinologist helping me with my weight.