Kerry - Interview 04

Age at interview: 32

Age at diagnosis: 28

Brief Outline: Kerry was diagnosed with acute lymphoblastic leukaemia after finding a mass in her chest, losing weight and feeling breathless. Treatment included intensive chemotherapy, radiotherapy to her brain, and oral chemotherapy. She is in remission.

Background: Kelly is a sales executive. She is married with two children aged 12 and 6. Ethnic background: White British.

More about me...

Kerry could feel something under her chest bone that felt like a grain of sugar. She felt generally unwell and was losing weight. A GP suggested she had indigestion but she felt increasingly ill and became breathless so returned to the GP. She was sent for a chest x-ray, which showed a mass in her chest. During a 4 week period in which she went to the hospital repeatedly for tests the mass in her chest grew and swallowing became difficult. A lymph node biopsy was arranged but cancelled because they couldn’t find any swollen lymph nodes so she was sent home again. She felt progressively worse, developed a cough and had to sleep sitting up because of the mass in her chest. One night her husband decided to take her to casualty where they said that her left lung had filled with fluid, which they drained and analysed the fluid and told her she had acute lymphoblastic leukaemia. She felt relieved to finally have a diagnosis.

She was sent to another hospital for treatment, where she would stay for six months. This meant leaving her children with her mother, which was very hard for her. She had a Hickman line fitted and was started on intensive chemotherapy. Her blood cells recovered well after each treatment so she was able to spend many nights at home. Her treatment caused a blood clot on her brain for which she was given daily injections of Clexane to thin her blood. She also became jaundiced and refused to continue with the treatment that was damaging her liver.

 

In addition to intravenous chemotherapy via her Hickman line she had some intrathecally (in her spine) as well as oral chemotherapy for two years. After leaving hospital she had radiotherapy to her brain over a 4 week period, which caused her to lose what hair she had left after the chemotherapy. She is in remission.

Kerry sent her children aged 9 and 3 to live with her mother, and said that leaving them was the hardest aspect of getting leukaemia.

My kids had gone to live with my mum because they told me I’d be in hospital for six months and if I’m lucky I might come out for the odd night. So my kids went to live with my mum. I think that was the most devastating experience to me because I remember it was a Sunday afternoon, we had lunch at my mum’s and then I had to leave them, and I can physically remember just collapsing in my kitchen. I just had to run out to the car and get in the house. My little boy was only three at the time and was shouting, ‘Mum mum where are you going?’ I mean because obviously he didn’t understand. That for me was the hardest bit of being diagnosed, not the telling me I’ve got leukaemia, it was that bit for me. But got through that.

Kerry's sons aged 9 and 3 were excited at first to be staying with their grandmother, although they did miss their mother. The older boy read books about leukaemia at school but didn't talk about it.

Tell me about your kids and how you handled that side of the problem?

 

Well we never mentioned the word cancer because my older son is quite clever. Although he was only nine at the time and he was at primary school then, he asked what was wrong, obviously he knew it was something not quite right, but because they’ve grown up with my mum they’re quite close to my mum because my mum babysits anyway. So really by them moving in with my mum it was a bit of a holiday. They were a bit excited at first. My little son was only three and he was a bit upset and he missed me.

 

Obviously my older son missed me but my older son took out books at the school library and read them at school, about leukaemia. So, and he never, he still to this day hasn’t told us that, the teacher told us that but we don’t ask him about it because obviously he didn’t want to talk about it. But he knows that leukaemia - because he’s now twelve - is cancer. And we used to make a joke of my bald head because it didn’t bother me at all. I only used to wear the bandana because I felt cold, because it didn’t bother me at all so we used to joke about it. And my tubes that I had, my lines that I had in, so they were quite relaxed about it because even when I was out they still acted like normal. That’s what I wanted, that’s why they didn’t ever see me at my worst times when I was really ill. They never visited me in hospital because I didn’t want them to come up. Because although I might have been looking well they might have seen other people around who didn’t look so well with the machines, and I didn’t want them frightened.

Kerry's blood counts remained sufficiently high to allow her home most nights while having daily chemotherapy for her ALL*.

And on the Monday I had to go to the hospital to be admitted. Got there, filled in the form, sorted out my bed, I had a private room. And then they said, ‘You can go home now for the night.’ My husband had taken me to hospital, filled in the forms with me, we’d had the discussion with the doctor. We all got upset about that because we realised what it’s going to take.

 

And then my husband popped home to get some stuff and I had to phone him. I said, ‘I’m coming out of hospital.’ And because of my personality my mum and my husband and my dad thought, ‘Oh God. She’s discharging herself.’ But I had to tell them, ‘No, I’m allowed to.’

 

But the first lot of chemo was strong to blast the leukaemia, so I was constantly drinking water, which I don’t like drinking water, but I constantly drank the water, so I just did whatever they told me. If they told me to drink lots of water, I drank lots of water.

 

And I was out most nights. I had to go every morning, see what was next, but most nights I was out. So out of six months I only spent two weeks solid. Other than that I spent, like I say, three nights or sometimes, for weeks on end I was in and out, in and out. I was quite lucky because your bloods drop when you have chemo. My bloods rarely dropped and when they did they picked themselves up quite easily, so I was quite lucky with that.

Kerry had cranial radiotherapy to prevent spread of leukaemia to the brain; it wasn't as bad as it sounds and she found it quite relaxing.

Why did you need radiotherapy on your head?

 

Because with leukaemia it’s in the fluid that goes around your brain. Any medicines that you have specifically for disease, like chemotherapy, stop at your brain because it will kill your brain, if you have medicines and it goes up and around your brain, the radiotherapy was to treat it around the brain because leukaemia is notorious, if it comes back it can enter the brain, so obviously to stop that, kill the cells off by using radiotherapy.

 

So did they say you had got it in your brain?

 

No. It was clear but it was preventative for me. So that was quite lucky.

 

Then you had to wear a mask.

 

Yeah.

 

Tell me about the mask.

 

Yeah. It was a clear mask and you had to lie on the bed flat and you had to be strapped to the bed with the mask. I mean it sounds horrendous but it wasn’t actually that bad. The mask is see-through, it’s completely clear and you’re only there for a matter of ten minutes. And I found it quite relaxing, so long as you just relax and just think it’s going to be over in a minute that’s fine.

 

So which bit of your head was the mask shielding? Was it your face?

 

It’s not a shield, it’s to hold your head still.

 

Ah

 

So when the radiotherapy goes into the brain it’s in the specific spot they want it to.

Kerry had repeated infections in her central line. Once an infection had to be treated at her local hospital where the staff didn't know how to clean the line so she did it herself.

Did you have infections with your Hickman line?

 

Yeah. I had about three. And one time, it was about a week before I was due to have it taken out, and I was quite ill and had to go back to hospital, just the general admissions unit at my local hospital, not the one where I was treated. And they didn’t even know how to clean the line. They didn’t even know the rules of one dirty hand, one clean hand, and I wouldn’t let them touch me. And my consultant who I’m still seeing, he knew me from when I was eighteen when I’d had the blood disorder, which is why I had steroids and bone marrow taken out when I was eighteen, so he’s known me for years. And there was a young doctor on and I wouldn’t let him treat me because he didn’t know how to do my line, and so he had to phone my consultant, and my consultant says, ‘Who is it?’ And he says, ‘Kerry’. And he went, ‘Just let her do it’, because he knew me, obviously, and he knew that I’m quite capable. I remember being freezing because you feel so cold and my lips were blue because I was freezing, dithering and I was thinking ‘They ain’t keeping me in this hospital.’ So I went to the toilet to warm my hands in the sink with the hot water, and I went back and she went, ‘Are you cold?’ and I went, ‘No. I’m fine’ So I had to keep going to the toilet to warm my hands, which is not a good idea really.

After her treatment finished Kerry enjoyed getting back to normal activities such as work, taking her kids to school, hanging out the washing, and cooking.

What was it like getting back into your job afterwards?

 

Great because you felt normal - and I know that’s a horrible word but that’s the only way to describe it - you felt normal, and taking the kids to school. One thing I really like doing, especially in the summer, I love hanging washing out. I don’t know why. I don’t like getting it in or ironing it but I just like hanging it out. And cooking as well, because I like to cook, and you have your food cooked for you while you’re in hospital. And then because I was ill I didn’t really have much energy to do much cooking so I just let my mum do it and my husband. But I like cooking so that was nice. Bored of it now though.

Kerry thought it unfair that she should have to pay prescription charges for oral chemotherapy taken at home; she bought a prepayment certificate which reduced the cost.

The thing I don’t like, not with the nurses or the hospital, it’s the government really, because when I was on tablet form of chemo you have to pay for your own. When you’re not in hospital you have to pay for your own chemo, so all the oral tablets I had I had to pay for and I don’t agree with that at all. Because if they can give drug abusers methadone on the NHS then they should give it to cancer patients who are much more deserving because they didn’t put their self in that situation.

 

That’s it. And I still had to pay for my own chemo out of that and to have a pre-payment card that’s like £40 for a 4 month one, which is only £40 but I don’t see why you have to pay it when you’ve got to have the treatment because if you don’t you die.

 

So you did get that pre-payment card.

 

I had to pay for it though. Yeah.

 

But it nevertheless probably saved you some money.

 

Yes. It did definitely. I would suggest that and I’d suggest you get the shorter one rather than the longer one and then as you’re coming to the end of it order some drugs so you’ve got and then order another one.