Frances - Interview 07

Age at interview: 45

Age at diagnosis: 42

Brief Outline: Frances was diagnosed with acute lymphoblastic leukaemia after a variety of symptoms. She spent a year in hospital having intensive chemotherapy followed by radiotherapy. Once in remission she took maintenance chemotherapy tablets for a year.

Background: Frances is a Project Manager. She is in a civil partnership and has no children. Ethnic background' White Scottish.

More about me...

After having always been healthy, in 2004 Frances experienced a series of infections that she attributed to stress, weakening her immune system. She didn’t go to the doctor but resolved to take vitamins. A few months later she lacked energy, had cold sores and joint pain that progressively worsened. She went to the GP who recommended a few days rest. Then she began to lose her appetite, lost weight, looked yellow and was having extremely heavy periods. One night she vomited and couldn’t get out of bed so her partner called the NHS 24 hour helpline. Before the doctor arrived she lost control of her bladder and vomited so violently that she tore muscles in her chest and abdomen. The doctor admitted her to hospital immediately.

 

She was given painkillers and had tests done which showed she had acute lymphoblastic leukaemia. She was relieved to get a diagnosis but shocked to learn that she would need treatment for two years and would spend most of the first year in hospital. She began to worry about her job and how her project would continue without her. She was fortunate to negotiate a year off work on full pay and her partner also took time off to support her.

 

Frances found starting chemotherapy distressing because she didn’t like the idea of having poison put into her body. She received chemotherapy intravenously through a Hickman line and intrathecally (in her spine via lumbar punctures). She disliked the Hickman line initially but got used to it. On one occasion the line became infected causing rigors (uncontrollable shaking), and on another there was a blood clot in it causing her head and shoulders to swell up. She became increasingly anxious about having lumbar punctures because the doctors had difficulty inserting the needle. Side effects included hair loss, sickness and a purple rash and Frances was disturbed by her changed appearance. She was prescribed the contraceptive pill to stop her menstrual bleeding and the chemotherapy forced her into an early menopause. After chemotherapy she was given radiotherapy. After a year in hospital she was declared to be in remission and sent home.

 

Once at home Frances and her partner planned a civil partnership ceremony but the day before the event she was given some test results which suggested she might be relapsing. She considered resigning from her job because of the prospect of being absent for another long period of treatment, but fortunately a repeat test showed she was still in remission. She was subsequently put on maintenance chemotherapy consisting of tablets to take at home. While she appreciated getting her life back she felt insecure being away from the health professionals that had looked after her, and at this stage the shock of the whole experience hit her. Frances felt she had lost her identity through prolonged absence from work and was pleased to return to work, part time initially, gradually increasing to full time.

Frances didn't want to be told what her chances of survival were from her ALL* because she didn't think it would help.

But this is going to sound really soppy, and I’m not a soppy person, but I remember when they told us that I had leukaemia and that it was quite serious and, you know, with my age and all that sort of stuff, and they’d said to me, ‘Do you want to know what your chances are?’ And I said, ‘No. I don’t want to know.’ He says, ‘It’s just a lot of patients ask that and we can.’ Basically what he was trying to say was if you ask me, ‘Am I going to live?’ he can’t say yes and he can’t say no. They don’t know, right. And I think that was his way of couching it. And I said, ‘No I don’t want to know because if you tell me there’s a seventy per cent chance that I’m going to relapse then I’m going to be worrying seventy per cent of the time and I really don’t want to do that. You know, I, whatever, if I’ve only got thirty per cent I want to make the most of that’, I says, ‘But I really don’t want to know. I don’t think it solves anything. I don’t think it helps anybody.’

Frances' first bone marrow test wasn't as bad as she had expected following a good explanation from the doctor of what it involved, but she became more distressed about them over time.

And when I got the bone marrow test, which was literally the next day, they’d rehydrated me, I was on saline drips and all sorts of other things overnight. Antibiotics as well. And they came in the next day and before they did the bone marrow they were absolutely excellent. They came in, they explained what a bone marrow was, how it usually feels, what they would do before it, what I would maybe feel during it, all that sort of stuff. They were very, very, very informative. Very good.

 

And I was just like, ‘I just want to know what this is. I just want to know and that’s it.’ So took the bone marrow and it certainly wasn’t as distressing as I thought it was going to be. Again I think the heavy doses of painkillers I was on probably helped because as my treatment went on I got more distressed about them. But certainly that first time it wasn’t what I expected it to be. I was quite relieved it was all over and done with very quickly.

The effects of leukaemia treatment made Frances feel that her body was alien to her and appeared completely ravaged.

Has having this illness affected the way you feel about yourself as a woman - your femininity?

 

Well. That is the thing I was surprised about the most. It did have an impact on my body image. It really did. And I’m somebody who’s very confident and I’ve got good self-esteem in my body. I’ve always been, I come from a family of chunky women, or sonsy women as we call them in Scotland, which means short and plump. And I’ve never, ever felt uncomfortable about my body, I’ve always felt quite secure in its abilities.

 

I think what knocked my confidence was my body wouldn’t work the way it used to work. I didn’t feel as strong. I felt as if my shape had changed. Facially I felt as if I’d changed quite a lot because my hair is so short now whereas it was always really long before. And I would sometimes, I avoided looking in mirrors for ages and thinking, ‘I never ever classed myself as vain.’ But I don’t think vain is the right word to describe it. I think saying that it’s vanity really diminishes the impact that this illness has on you. I think that I would sometimes look in a mirror, and how I described it to a friend of mine was that when I looked in the mirror I could see the shock and I could see the impact of what my body had been through on my face. And I thought I looked really, really tired and I looked, a lot of people say to me that I’ve got quite bright eyes, but my eyes were really, really dull and it felt like I was walking about in an alien body. It just didn’t feel like mine any more. I’m getting used to it again. I’m starting to like it again. I’m not used to it. I’m not somebody who ever had a dislike for their body so to have that was very odd and disturbing to me. I didn’t like how my body felt, I didn’t like how my skin felt, I didn’t like my shape.

 

I actually put this down to being in pyjamas for most of a year, you know, that any clothes I wore I felt claustrophobic in even though they were too big for me for a while. And I had lost an incredible amount of weight and I didn’t look like me. Everything just looked, my eyes looked too big, my teeth looked too big, my face was pinched. I lost a lot of weight and my boobs didn’t look like mine, you know, they were just odd. It was like, ‘Who belongs to them? They’re not mine.’ So there were lots of things like that when I was getting the treatment I never thought too much about it, it was after it I really, really, really felt as if my body had been completely ravaged by the treatment really.

During her ALL* treatment Frances felt very ugly and insecure about being seen; she and her partner had no sex during that time but it was not an issue for them.

So did the way you felt about your body affect your sex life?

 

Yes.

 

Would you be prepared to talk a bit about that?

 

I felt very ugly. I felt too tired to even think about anything. I mean at points when I was being hugged, even being hugged it, because my partner’s arms went round me a different way and fitted me differently, I just didn’t like it. I just, no, I felt kind of uncomfortable about it and I felt insecure about being seen. I felt very let down by my body, especially when I was very weak and I was home, in the first year when I was home at points. I mean any sort of, let’s face it when you’re tired and you’re exhausted and you feel that sick, it’s not exactly conducive to have a nice cosy sexual night. Do you know what I mean? It’s not going to happen and it didn’t happen. And it was fine. It was never an issue, it wasn’t even discussed, you know, it was a case of, ‘What do you need right now?’ ‘I need a bag of Cheesy Wotsits and a bar of chocolate because I can’t eat anything else.’ ‘Fine. That’s what we’ll get you.’ Curled up on the couch and, you know, good funny DVDs or whatever. Comedy.

 

But even things like getting in and out of the bath was really difficult, and getting up and down off chairs was really difficult, and I felt really, I don’t know, awkward, and it just felt alien so I didn’t even like touching my body. You know, I would be in the bath and I’d look at my legs and where I used to have really, really good muscles it was just this kind of saggy flesh and I be quite put off by it, so it’s not exactly conducive to having a healthy sex life when you’re feeling like that about your body.

After treatment Frances had hot flushes with nausea, restlessness at night and felt moody when she should have been having her period, but considered her menopausal symptoms relatively mild.

But it has actually brought on the menopause, which I’ve been neither up nor down about it. It’s not been a terrible trauma for me at all. I’ve not had any adverse effects over it so quite delighted to be honest with you, so yes.

 

What menopausal symptoms have you had?

 

Hot flushes. Oh hot flushes. I hate those, and when I get them I can feel quite sick. And I can get very restless in bed, but I, well I don’t think I’ve had any mood swings, I don’t think I’ve been the slightest bit, my partner tells me, she’ll often say, ‘You used to have your period at the start of every month and it feels like you’re pre-menstrual’, because I’d be quite, huh, you know, quite nippy, but nothing major. Again, not anything like I would have expected. It’s a bit like you don’t realise how much you take in all the horror stories about these situations. And it’s not you dismiss what women go through, certainly when they’re menopausal, because a lot of our friends are menopausal at the moment, and it’s actually quite hysterical, trying to organise anything is a nightmare. We get the dates wrong, we miss information, we don’t bring diaries, we don’t do this, we don’t do that, it’s quite funny. It’s like the menopausal version of the Keystone Kops, it’s like we’re all bumping into each other and forgetting things and, oh doesn’t matter. So it can be very amusing a night out or a night round a dinner table.

 

But certainly I’ve not had anything that I’d been led to believe the menopause could possibly be. I mean I know it’s very different, like anything, how you physically and emotionally respond to something is different for the next person, but I really expected it to be worse. The flushes and the restless nights are probably the worst that I get, so not a terrible hardship.

Frances experienced many colds and flu and ear infections before her ALL* diagnosis; she had attributed them to stress and burn out.

Okay. I’m somebody who’s generally always had pretty good health. Never really had any health problems. And I think when I started my job, my job’s got quite a lot of stress, and I used to always find at the end of the year, you know, between maybe October and December, that’s when I would feel quite run down. And what happened in 2004 was the start of 2004 I noticed that I was getting lots of niggly colds and flus, things that I would never normally get.

 

Also I started getting throat infections and ear infections, again things that I’ve never ever had. And I just kind of put it down to the fact that I’d had a very stressful year before and my body was just adjusting. Maybe I was just a bit burned out. But it just, it never ceased and I mean I look back now and I think, ‘Why did I not go to the doctor? Why did I not phone the doctor?’ But I didn’t. I just kind of put it down to, ‘Oh my immune system is a bit knocked because I’m burned out, I’ll take vitamins’.

Frances was shocked to learn that treatment for her ALL* would take 2 years and that most of the first year would be spent in hospital with short breaks at home.

So I was expecting, well I suppose I’ve known a few people who have had breast cancers and testicular cancers, and I was expecting it to be like that' you would get a block of treatment and then you’d be off treatment and a block of treatment. So when they said to me, ‘You’re going to spend the vast majority of the first year of your treatment...’ And I went, ‘The first year of my treatment!’ And they said, ‘It’ll be a two year treatment programme that you’ll be on.’ And I was thinking, ‘Right. What does that mean?’ And they said, ‘You’ll probably spend the first, just about the first year in hospital. Most of that will be in isolation units.’

 

So all of a sudden the reality of it hit me and I was thinking, ‘What about my job? What am I going to do about my job? What am I? How? What?, I I I…’ The concept of being away from home in hospital for that length of time, I hadn’t even thought about that. And they explained to me what the programme was and it was like a series of blocks of chemo, and that the first year would be intense chemo and that would make me very sick, possibly, very ill. There would be side effects and that I would be in hospital for two months at a time. And when I did get out I’d be out for a week or even a weekend. I wouldn’t be out for blocks of time. And they also explained that, in the middle of the year, we’d start in January and in July during that phase of chemo I would also get radiotherapy.

Frances initially found cranial radiotherapy distressing because the mask made her feel claustrophobic, but found it less scary as she gradually got used to it.

And then almost like immediately after that I then had radiotherapy. And I found the radiotherapy quite distressing mainly because I had to have a plastic mask fitted over my face, and I can get quite claustrophobic anyway, so even just getting the mould done I found quite difficult. And the first day they fitted the mask on to the machine for the radiotherapy, that was just horrible. But I have to say I got used to it very, very quickly. They promised me chocolate, so I’ll do anything for chocolate. So after the first few times it was fine. You knew what to expect and it certainly wasn’t anywhere near as scary. But during that time I was very sick.

Frances and her lesbian partner had already decided that they didn't want children, so infertility was not a problem for them, but she was pleased that her consultant raised the issue.

Yes. The first thing I wanted to ask you was, they put you on the pill because you were having heavy periods as part of your symptoms. But presumably the treatment will have done something to your fertility?

 

Yes and when they said they were going to start treatment, in the room I had my consultant, who’s kind of been my main consultant all the way through it, and one of the registrars, and the nurse and the cancer specialist nurse. And it was quite funny actually because by this time I was sitting and I was upright at this point so I was, because of the drugs, I was able to get up and walk about, so I was feeling quite smashing.

 

And my partner was sitting there, and from the word go, I mean there is always an issue if lesbians or gay men are going into hospital, there’s always the issue of, quite often, do we need to face people’s discrimination? Do we need to face people’s disapproval? And that’s always a fear. I mean I think that saying that lesbians and gays have got equality, we’re only part of the way there, we’re really only part of the way there. And we still face discrimination and we still face disapproval. And I think when you’re feeling so sick and so ill and you’re really, really scared, it’s important that your partner’s involved in that, and it’s important that you don’t need to think about that. And I never experienced any homophobia at all.

 

And the reason why, when you’ve asked me that question, the reason why I’m going into that is because the very next day after they diagnosed me and they were coming in to tell me about treatment, my consultant says, ‘Now there’s going to be a number of side effects that you need to consider.’ And he said about hair loss and all of this sort of stuff, and he says, “And also there’s a good chance that it could make you infertile”. And I never even blinked, I was like that, “Right, and next?” And I think it was that thing that he knew about her being my partner, he didn’t want to make the assumption that because we were two women we wouldn’t want to have children, so he was trying to cover all the avenues. And I just went, “Forty-two. No. Not interested. Just move on, right. I don’t care about them.” And I says, ‘I know that would be an issue for other women.’

 

And I think he put it very, very sensitively and he says, “Look. I’m going to explain it to you anyway”, he says, “Just in case.” And I says, “Do you mean I’m going to go through the menopause?” I was quite excited by this. And he said, “No. You might be infertile, it’s different”. And I was going, “Oh right okay.” But he explained the process and I was thinking it was very, very sensitive of him, because it could have been an issue for us, and because I’d actively made a choice years and years and years ago that I didn’t want children, as had my partner, all of a sudden I thought that must be awful for women coming in here who do want to have children and they’re faced with that.

 

So no when they offered it he was trying to say all the right things and be very, very sensitive and not make assumptions. And I just went, “No. It’s okay. You’re fine. It’s not a problem. Not an issue for us.” And he was like, “Right. Okay.” But I mean since then when they put me on the pill I just thought it was hysterically funny. You know, forty-two years of age, never been on the pill and here I am on the pill.