Complementary approaches and lifestyle changes

Complementary therapies

Cancer treatment or support centres are increasingly offering complementary therapies such as reflexology and aromatherapy. Meditation and relaxation techniques may also be offered to help people learn how to manage the stress of cancer. Such therapies are now often seen as part of conventional support for many patients. Some people paid for complementary therapy sessions from private practitioners, others accessed them via friends or family.

A complementary therapist herself, Gilly was pleasantly surprised that her hospital offered a…

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I’m somebody whos worked in the complementary world for years, I made a decision, although I did do the classic statement, it does seem at one point on the second day in hospital, that my body is my temple. So I realised very early on in my kind of confused state that I just had to trust them implicitly in what they were doing, and that the drugs would do whatever they did, and that the complementary side, which, again the hospital provided with reiki and massage and therapy, would support me. So I actually got the best of both worlds. So I got the phenomenally intensive drug regimen and at the same time holistically could support myself through the hospital as well as through all my wonderful friends and community.

Okay. So a few incidents with your health professionals but on the whole what were they like?

I think where I was unusual in that they had a very, unusually for the NHS, a very holistic point of view, that they wanted to put the patient first, although eventually I said, Forget it. You put the cancer first. Let’s get two things straight. So they were always very, as I say, matter of fact is the wrong word. There was that sense of clinically this is what had to be done, you had to have this at this time and this at that time, and yet there was that sense that you were an individual. I mean at times maybe I didn’t feel I was, because you just, it’s like a kind of leukaemia factory. You’ve just got to be, you know, this stuff is being poured into you. But I think that the balance they have there between this phenomenal complementary side – which you could access at any time during my period – and the medical side, is a very beautiful model. I think there’s more that can be done but as far as I’m concerned it worked.

Can you tell me a bit about all the complementary things you were able to get in hospital?

It was automatic that you could either have reiki, you could have massage, you could have reflexology. There’s a therapist there, welfare rights officer. And you would just ask for it and it would come. And sometimes in actual fact the staff would say, Would you like something today?, and they would book it in. So throughout my period, maybe once, twice, three times a week an alternative practitioner would come in and do whatever. And I think it was open to both family members as well.

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Most complementary approaches to dealing with cancer have been less thoroughly tested than conventional medicines so their effects are not proven in the same way. They have no proven effect on cancer growth, but they seem to help many people to cope with feelings of stress, anxiety and depression and promote a sense of well-being. There is growing evidence that they may also reduce some side effects of cancer treatment. For instance, acupuncture can be used to treat nausea resulting from chemotherapy and can also relieve some types of pain.
Many people had used complementary therapies, such as reflexology (a kind of foot or hand massage derived from Chinese acupressure) and reiki (a Japanese system of natural healing), to help them relax and to cope with the effects of the illness and its treatment. Some people had been prepared to try anything that might help while doing no harm. Others believed that the complementary approaches they had used had helped to reduce their symptoms.

Mark had been sceptical about complementary therapies but since his CML* diagnosis has found…

Age at interview 41

Gender Male

Age at diagnosis 35

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Also from the very beginning I have been open to any other forms of therapy, if you like, and I have tried most of the alternative therapies, things I might have been sceptical about prior to that, but when you’re in that sort of situation you are open to any sort of suggestions. And I have tried aromatherapy, reflexology, hypnotherapy, crystal therapy, I found them all actually to be of some benefit in different ways, as well as some counselling. But also some research that was done by my parents came up with the name of a world renowned healer, and I have been visiting him since 1996, first of all every other month, but now only twice a year. And who is to say why it is that I am better at the moment. I am still here, it could be from what the doctors were doing, I was told that sometimes when you have a bad infection and you recover from it, which means your blood cells are fighting back, that can do you a lot of good. Or it may be from the healing that I am receiving, I don’t know. But whatever it is I am keeping at it to make sure that it keeps on.

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Rani attended a cancer support centre for aromatherapy, visualisation and healing. She feels that…

Age at interview 61

Gender Female

Age at diagnosis 57

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Well I did some other things as well like going for healing at the Cancer Support Centre. And that was some experience in the sense that I was so anxious earlier on, and after half an hour of feelingI opened my eyes feeling so calm, so relaxed, and I thought, Gosh, how did this happen It just vanished out of me. And I remember coming back on the train wanting to hold on to that lovely feeling I had inside, feeling so relaxed, because for so many months I didn’t feel like that. And I thought, This is really something grea. So I had more healing as well in the Cancer Support Centre. And another thing I got from them was aromatherapy.

Was that helpful? How did that help?

Very much. Because I was so tense in my body, all over tight feelings and knotted inside because of all the things I was coping with, all these emotions and fear, anger. I was very angry too those days. I don’t know with whom or what but I was angry inside. Why did I have to get all thi, and Why do I have to do all this, also. I was quite happily doing everything up till then. it’s just me not being able to cope I think. Then I went for visualisation at the Cancer Support Centre, which was great too.

Explain to me what happens when you go for visualisation, because this is something people
Because it’s guided visualisation, the lady tells you that you shut your eyes, imagine you are in a place like this, very calm and beautiful like that, and it is just tapping out your own imagination to feel well within you. it’s feeding into your mind everything is OK, everything is better. And they did different kinds of visualisation, one with the moon and another with the sun, because the sun and the moon energies are working within us all the time it seems. The positive aspect is the sun and the feminine and negative aspect is the moon, the feminine and the masculine, we all have that. If you connect with that within you, you become a whole person. There are so many concepts behind these things. Because when you are emotionally shattered and sort of fragmented you are all over the place, not working as one unit. So the idea of healing means to become whole it seems, to become one, one harmonious unit. Illness is because your harmony and balance is scattered it seems. That’s the idea behind it.

You’ve been getting better, what would you put that down to? That’s great news.

Maybe it’s a combination of factors, all the things I did. All the echinacea and changing my diet or improving my diet, meditation, having more rest, doing the things I want to do, enjoying what I want to, getting more balance into my life, and visualisation. Another thing I went for counselling as well to talk through things that were worrying me, that helped a lot too, to clarify things. So all those things in combination perhaps. Yoga, meditation, doing more exercise, because I am very lazy when it comes to exercise, I used to be very lazy, but now I think it is important and try to do some every day, little bit, do one every day.

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She has tried many different complementary therapies but regularly uses yoga and Chi Kung to help…

Age at interview 38

Gender Female

Age at diagnosis 32

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Have you told me about all the different complementary things that you do or are there some more?

No I think for me one of the strongest is Chi Kung. I learned from somebody whose husband had had prostate cancer and she’d learned from a Chinese practitioner. And the reason I say it’s the strongest is it’s a very, you walk around a tree. You should do it between 7 and 11 morning and or evening. But if I haven’t been doing it for a while and I’m not feeling very good and I start my feet are painful. When the pain in the feet passes after a few sessions then I know it’s going to start working, and all the bad cells settle in your feet. And it particularly leaves me very clear breathing. I won’t be coughing.

That is very, very strong. I have reflexology and I try and have it regularly. And if I suddenly feel just not quite right, Ah I haven’t had any reflexology this month. And I think reflexology really helps with supporting the immune system. But you do need an experienced reflexologist, not one whos just done a quick little course. And you can ask all sorts of questions to see that they really know what they’re talking about. For me reflexology and Chi Kung are probably the things that have had most effect. Yoga I think is very good for the breathing.

I have tried so many things over the years’ foot detoxes, different massages, all sorts of different exercises, but those are the ones that stay with me that I use. I’ve tried crystal therapy, light therapy, colour therapy. I’ve tried all sorts of things. And there was an ayurvedic doctor who told me, I used to wear a lot of red, he told me I shouldn’t wear red, it was a very angry colour. And I don’t wear red now and I’m so much calmer. And that of course is great for your health and your well-being too. And I think listening to all these things and taking the ones that work for you really. Yes. But I definitely need them.

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As the word ‘complementary’ suggests, these approaches should be considered an addition to, and not a substitute for, conventional medical treatment. One woman believed that alternatives to conventional medicine had the potential to cure disease but that it was extremely difficult to achieve such a holistic approach within the constraints of a western lifestyle. She therefore recommends supporting the body with complementary approaches while having conventional medicine. She wishes that more research would be done into alternative therapies and hopes one day to travel to the Far East to explore alternative ways of curing her chronic myeloid leukaemia.

She believes that alternative approaches could cure disease but not in a western lifestyle so…

Age at interview 38

Gender Female

Age at diagnosis 32

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So do you believe that complementary approaches can cure disease?

I do. Very, very much so. But I think over here, I think the discipline needed is very difficult to incorporate in the lives most of us lead. And it can incur an awful lot of unfavourable comments from other people and therefore I think often it’s easier to integrate the two over here and support your immune system and your mind. I think one of the problems with Western medicine is that it doesn’t look at the whole person and it doesn’t look at the cause. And if you’re going to try and cure the symptoms, to stop it reoccurring you need to understand why and where this has come from. And I think that’s something we miss over here and so I do believe it can cure but you’ve got to look further than that and ask yourself why you’ve got it in the first place.

And I think traditional medicine is too dismissive too quickly. They seem to have a fear, and of course most alternative and complementary therapies they’re not going to make, a lot of them are not going to make people money so there are no drug companies behind them. So where’s the incentive? You’ve got to have people with a true belief understanding and often they’re people who have been brought up with it maybe. There’s a chap I see in London and his father was an Indian ayurvedic doctor. You need people like that and he then went on to train as a traditional doctor, you need that, those things working together. And I think it’s a shame that money plays such a big part in research, because it’s biased. I think there’s some amazing things, I’m not knocking hospitals, they do some incredible things, and surgeries and things, but I just wish they would open themselves up so that everybody had the best of everything.

I also, as a result of Michael Gearin-Tosh’s book, went out and searched many alternative treatments. I have met some fascinating people from all around the world. My library is huge now and I truly believe that whatever course you take there should be integrated therapy. So if you are going to go down the conventional route you must support your body with alternative treatments. And they have been a huge, huge part of my life ever since. I’ve always had a fundamental belief that everything we need is here naturally if only we know how to use it. And I take the drugs that are available because I have a child and I live in the Western world, and what I believe one needs to do to overcome these sort of illnesses without drugs is difficult, the discipline is difficult to achieve in the Western world. But I would like when my son is older to go somewhere like Bali to take the time out and try and come off the drugs. Anyone whos come off them in England or in the Western world, in America, has never retained the same level of remission.

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Because some complementary therapies may be unsuitable for people with particular types of cancer or having a particular treatment, people with cancer should discuss complementary therapies with their hospital specialist before having them. For instance, research has shown that it is safe for people with cancer to have massage but it should avoid the parts of the body affected by the cancer. Some professionals recommend superficial but not deep massage. Some people suffering from aches and pains said massage helped to soothe them.

Janet had received contradictory advice about the safety of massage and reflexology for people…

Age at interview 70

Gender Female

Age at diagnosis 63

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Massage. I have had conflicting advice over massage. You try, I’ve asked my GP and I’ve asked my consultants before, ‘Is massage okay?’ ‘Oh yes. Yes fine. And yet when I had had the breast cancer and I was invited to one of their kind of pampering days, that I think Breast Cancer Care does, I was not eligible for reflexology or massage according to their lights in case it disturbed things. And yet following the pneumonia, several times during when I haven’t been well I have somebody who gives me reflexology. And I find that very beneficial. It’s expensive but very beneficial.

You said the reflexology was helpful. In what way does it help you?

It’s an interesting thing. It does relax you completely. I found it quite delightful. And I always go off to sleep afterwards. It is lovely. Really nice.

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Health professionals vary in their attitudes to different complementary therapies. Some doctors are particularly cautious about patients using herbal medicines because they are unsure of their effects and possible interactions with other medicines. Some people had been advised by their doctors not to use complementary therapies during chemotherapy.
Patients’ attitudes to different complementary therapies also vary; for instance some people we spoke to were happy to use relaxation techniques as part of a psychological approach to coping with their leukaemia but would not consider taking herbal medicines. Some people used complementary therapies to treat other health conditions but not their leukaemia. Others said they didn’t believe in complementary therapies or that they didn’t appeal to them.

John had used complementary approaches that helped him to relax but was against herbal medicines…

Age at interview 58

Gender Male

Age at diagnosis 52

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Have you thought about or used any complementary remedies to do with your leukaemia?

No. I have this theory which is that if it was working the health service would use it as a main course of treatment. If they don’t use it it’s because it doesn’t work. I know that sounds really sceptical.

Or because they don’t know whether it works.

Well, no I don’t go along with that line. My view is that there’s enough herbal medicine in the world. There’s enough other countries that depend on herbal medicine and other sources of treatment that if there was a source of treatment which is found to be working our health service wouldn’t be that perverse that they would choose not to use it simply because it came from India or China or was associated with a herb or something. So yeah, I think it’s the wrong place to go.

However, I do believe in alternative therapies. So I believe in things like massage, reflexology, sound, other things that kind of calm your emotion or stimulate your emotion, because I think they have a really quite important part to play, not in terms of treating the disease but in terms of helping you manage it and live with it. So alternative therapies yes, but alternative kind of drugs and stuff, no.

Okay. So did you use any of those therapies?

I certainly used, I used I suppose three, mainly, I think I mentioned them before. One was the relaxation thing, which was to be able to get to relax. The second was, this doesn’t sound like a therapy but it is, of getting to know how and when to sleep and how to sleep well. And that really is very therapeutic. And the third sort of alternative therapy was things like kind of reading or distraction therapy.

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Mike was happy to adopt complementary approaches to deal with stress and to aid recovery but…

Age at interview 66

Gender Male

Age at diagnosis 62

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Have you thought about or used any complementary remedies in connection with your leukaemia?

Have to mention a name. Maggie’s offer things that deal with logical practical ways of dealing with stress, how to try to increase your sleeping so that you can recover well that way, diet, nothing faddy, perfectly straight forward sensible diet. So not alternatives but complementaries, and I certainly go in for anything that I can see that seems to be helpful. I’ve never been inclined to opt for alternative medicines. I consider I’d be foolish to back away from the National Health Service. I mean whatever your criticisms of it are it’s not out to get you. And alternative medicine somehow or other doesn’t speak to me of being totally logical in that you’re removing entirely from the field of trained medical experience, so no, nothing else.

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Diet, exercise and other lifestyle changes

Many people wanted to support their general health by eating as healthily as possible and adapted their diet to include more fresh fruit and vegetables and less red meat, processed foods, caffeine or alcohol. Marie had started eating fish three times a week even though she didn’t like it. One woman went vegetarian for 2-3 years and ate only fresh or freshly cooked food on the advice of an ayurvedic doctor. Some people had been advised to increase their iron intake to avoid anaemia. Elsa ate red meat for this purpose during episodes of illness but cut it out when in remission. Two people cut out sweet foods after they developed diabetes as a complication of their leukaemia treatment.

Jane suggests that trying to keep as fit and healthy as possible is a good idea and thinks eating…

Age at interview 55

Gender Female

Age at diagnosis 51

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And there are people who do all sorts of things and there is nothing really you can do. But the only thing you can do is just keep yourself fit generally so that if you’re going to be ill at least you’re going to be ill from a fit point of view not from a, oh, not walking very far or rather overweight person point of view, if you’ve got that option. Patients with CLL tend to be elderly, they tend to have a lot of other comorbidities, a lot of other things wrong with them, and that can obviously limit their lifestyle. But eating healthily most people can do that and most people manage to do it.

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Some people asked their doctors what dietary changes they should make and were often frustrated by being told just to eat healthily. Some sought information elsewhere and as a result decided to cut out certain foods or take dietary supplements. Research shows that eating a healthy diet can reduce the risk of developing certain types of cancer (not leukaemia). But so far no scientific evidence indicates that following any particular diet, or cutting out key elements of a normal diet, as some therapists advise, can treat cancer or prevent it coming back.

In Jim’s experience the NHS was not interested in giving specific dietary advice but he…

Age at interview 24

Gender Male

Age at diagnosis 23

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Okay. Is there anything else you want to say?

Yeah, I’d like to say something about nutrition and supplementation. Whenever I’ve spoken to the NHS staff they’ve always just said, Healthy balanced diet There are no answers to what’s the best diet for anyone, and everyone is different. But there are lots and lots of questions. And certainly it goes without saying that you are whatever you put into your body, whether it’s chemotherapy drugs or whatever food you eat, whatever vitamins you take, whatever you drink. That’s a large proportion of what your body’s made up of. So definitely having good nutrition is going to make it easier for your body to survive, maybe not get cancer, maybe do a better job of fighting it, maybe have your organs survive better through all the chemotherapy you have. But the NHS really don’t take, I can understand, they don’t have the money. You know, food and supplements can’t be patented like drugs can and so there’s no money there really.

But it’s definitely worth taking on board yourself and reading up about and trying to find stuff that’s going to make you more healthy. But everywhere I encountered the NHS just didn’t really take any interest. Just always said, Healthy balanced diet. Go and eat a McDonald’s if you want one So yeah, I mean I’ve tried to eat a healthy diet and take certain supplements and I feel fine. I’ve had minimal side effects from the therapy and so I feel that I’m doing, not exactly the right thing, because there is no answer, but not doing anything wrong and not really neglecting anything. So there are other people outside the NHS who can give information. But it’s definitely worth eating your greens. Yeah.

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She has cut out dairy foods, fried foods, processed foods, foods containing psoralens, and eats…

Age at interview 38

Gender Female

Age at diagnosis 32

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Tell me a bit more about your diet. What are the other things you’ve excluded and what do you eat?

it’s funny because if I’m going to stay with friends they’ll say, Right. What can you or can’t you eat?’ And I’ll say, Well I don’t eat dairy but otherwise I’m fine. And then I get there. They put something in front of me and I think, Oh my goodness. And because I’ve got so used to what I do and don’t eat I’ve rather sort of forgotten. But at home we’re totally organic and I believe very, very strongly in that. I don’t fry anything because when the oil is heated the cells within the oil change and that’s when they become carcinogenic. I don’t eat dairy and I think for a lot of people just, if they have colds and things, omit it. We get our calcium from our broccoli and things like that.

There are two slightly strange things I don’t eat. I don’t eat parsnips and I don’t eat, in fact three’ parsnips, parsley or celery, because I read something about them containing psoralens (spelt with a p) and decided to heed this advice. And interestingly enough I went down to somewhere in [place] and went on a detox weekend. And we were juicing all weekend and they included celery, and I said, Well I won’t have the celery because of psoralens. And the chap said he didn’t know what I was talking about. And whilst I was there I picked up a book in his sitting room which had been written by an ex-girlfriend of his, and in it, in the front of the book was a very strongly worded letter from a chap in America pleading with her to exclude celery and parsnips and parsley from her recipes because of the psoralens. She was a cook. And she didn’t but this letter was included and I showed it to him and I said, This is in your sitting room. Anyway by the end of that week nobody was having celery in their juices.

But I tend to, again if the same thing comes up enough times I will heed it, and I eat a lot of brazil nuts, I eat lots, I eat very well but I eat lots of fruit, veg, fresh food. I think it’s incredibly important to have organic meats, and I know there is a perception that organic is expensive but the company I get my veggie box from did a survey the other day. And I don’t know if I can mention the supermarkets but they went to several major supermarkets. Well the first supermarket they went to you couldn’t buy seasonal, organic produce. The other two major ones they went to were both more expensive than the box. But interestingly, one of our main supermarkets, their regular line buying the equivalent vegetables was more expensive than the organic box. If you get your box it’s not only more interesting but you’re not having all the packaging too.

And I’m by no means a vegetarian, I believe we do need our meat, but we do not need it in the quantities that people generally eat it, so I would rather have superb meat a few times a week than cheap meat, processed, full of antibiotics, at every meal. So soup is fantastic, lots of soups, freshly made stocks, porridge for breakfast, yeah, so my breakfast will be porridge, nuts, fruits, but I did grow up in France so I am inclined to pain au chocolates. That’s the only bad thing I’ve never given up, and I now do drink wine, which I never used to drink. And if I was ill again I would cut it out straight away.

I had no alcohol at all for a over two years and in fact, apart from champagne, nothing probably for about four years. But I think it’s avoiding, as everyone should, avoid, you know, I’ve never eaten ready meals but it’s just having good bas

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On the advice of an ayurvedic doctor one woman drank wheatgrass juice for a while but said it tasted horrid. A friend of Jimmy’s had recommended a herbal tea made from roots, bark and leaves. Several people had introduced green tea into their diet either as daily capsules or a drink. Some people took echinacea to boost their immune system. Other common supplements included vitamins, iron tablets, fish oils, ginkgo, magnesium and glucosamine. One woman took a supplement called inositol hexaphosphate (IP6), which occurs naturally in certain foods and is being researched as a potential anti-cancer agent. Some also tried homeopathic remedies; Jane was given one as a gift but said it had no effect on her.

Thelma takes a green tea capsule every day as well as a homeopathic remedy and vitamin C tablets;…

Age at interview 65

Gender Female

Age at diagnosis 63

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What about kind of complementary therapies at all? Have you thought about any of those or used any?

Oh I use them.

Oh yeah? Tell me what you use.

Yeah I use green tea. One green tea tablet a day. And my niece works for a homeopathic lady and I’ve used that, it’s to help with after the chemo. They come from America, they’re called, I’ve got them outside, they buy them for me, they buy them, they’re forAnd I use two of them a day. And vitamin C tablet. Yeah because why I use the rich tea one, not rich tea – hark at me! — rich tea, green tea, 315 milligram, when I was in hospital my niece brought me in this bit of clipping in the paper saying about the green tea, about leukaemia. So she brought me the little box of them and in the tablet form to take one a day. And I asked about it and he’s turned round and he said, I don’t personally.. – this is this doctor who I was talking to – Personally I don’t think it’ll make any difference’, he said, But if you want to take it you take it. So I took that and the homeopathic one, the [name] from America that my sister’s got, vitamin C from word dot. And the only time the doctor doesn’t like me taking them, I showed my professor doctor who I see regularly. He said, No, I’ve got no objections to you taking them. He said, The only time I will have is when you’re on chemotherapy. The vitamin C tablet yes, but the other two stop while you’re on chemotherapy. So I’ve always taken them. Got them myself or my sister’s got them for me. So I took them from the word go so they can’t be doing me any harm can they?

Do you think they’re doing you any good?

Yeah. I do.

In what way?

I don’t know, I don’t. I just think they’re helping my body. I think they’re helping my body. They’ve got good results the American ones, very good on the internet, so my niece tells me. I don’t know. But they’ve got very good results and people have been going to her, she’s been, oh her father-in-law was a doctor. And some hospitals agree with it and some don’t do they? But no I feel, yeah, I take them regularly.

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Some changed their diet either to restore weight lost during leukaemia treatment or to lose weight that they had put in through inactivity as a result of post-treatment fatigue. Some had increased their amount of exercise, both to help their recovery from treatment (see ‘Remission and recovery from treatment’) and to be as healthy as possible. Most recommended relatively gentle exercise at first, such as gardening, walking, cycling or Tai chi. Janet said she wanted to swim but had been advised to avoid public swimming pools because of the risk of infection.

Chanelle focuses on diet and exercise to control treatment side effects, promote healing and gain…

Age at interview 28

Gender Female

Age at diagnosis 20

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Have you ever thought about or tried any complementary remedies for your leukaemia?

I haven’t really, I mean where I focus on is my diet and my exercise primarily because it helps me control side effects. And secondary to that because I felt if I was going to do anything that would help my body heal then it would be good food and exercising, which speeds up the healing process anyway. So that was really the only course of action that I pursued, so I haven’t actually tried anything else.

You said you went to see a dietician didn’t you?

I did. Yes. And we talked about things such as cutting down of sugar levels because cancer cells can grow when there’s quite a lot of sugar content in your body. And just doing things that would give me more energy and raise my haemoglobin levels. So it was all things very targeted to what foods I was going to put inside me that were going to do good things for my blood work and stop me being anaemic as well because that can often be a side-effect of these treatments.

And also stop putting things that would be construed as carcinogens into my body, and stop eating lots of processed foods and high in salt foods. But also to help me put on weight as well. So I mean it was all very practical stuff really that I was going for and still do to this day actually.

What sorts of things were you eating then?

Lots of things.

Good things.

Yeah. Lots of green leafy vegetables that have lots of oxygen in them. Just no processed meats. Just cut out the salt. Really cut out kind of refined sugars. Making sure you’re eating at least five portions of fruit and vegetables, lots of whole grains. And also things that were going to help me control the IBS as well, so things like wholemeal yoghurts and kind of cutting down on things like white bread and white flour that would aggravate it. So what I didn’t want to get into was anything, there are some things that I still think I would have liked to have tried them, such as acupuncture and what have you, but I was so focused on the diet. But what I was really focused on were things that were actually going to have some effect and I could have charted scientifically that this is going to help. And then because that kind of took over, and planning out a diet is something that can just take over your whole life really, then it didn’t really leave much space for anything else really.

Did you regain all the weight that you’d lost?

Well more actually. This is possibly the heaviest that I’ve ever been. Because obviously I think when I was sixteen I was just tiny like most young girls are. And then I probably started to develop the illness when I was about eighteen. So the weight I am now is probably, physically this is probably the happiest I’ve ever been with the way that I look. And although I’m still very small it’s probably the biggest I’ve ever been as well actually.

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Dianne gained weight after her leukaemia treatment made her tired and inactive; she is determined…

Age at interview 53

Gender Female

Age at diagnosis 50

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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.

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A few people stopped smoking after leukaemia was diagnosed. John says he also tries to avoid certain chemicals, such as insecticides, and stopped working very long hours.

In addition to her leukaemia Thelma also has emphysema and gets breathless. She decided to quit…

Age at interview 65

Gender Female

Age at diagnosis 63

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I gave up smoking. That I did do. I was a smoker but I was told leukaemia wasn’t smoke-related but I gave it up. I did give it up for my breathing as well. I thought, ‘Well what bit of life I’ve got I want a bit of quality. So if I’m with the chest and smoking as well, it’s going to take it down. Ain’t going to cure the leukaemia or anything like that but it still will help me in regards to breathing, so I’ll give that up. Yeah.

Was that difficult? How did you manage it?

It’s hard. I still could light a cigarette up. I’ve got to be truthful. No good saying I couldn’t, I could. Yeah I could, yeah. But no I gave it, I gave it up.

Just with will power?

Yeah, it’s will power. Oh yeah it is. It takes a lot of will power, yeah.

Well done.

Yeah, it takes a lot of will power.

So you didn’t use patches or anything?

No no. I thought it was silly, you’re only putting a bit of nicotine in anyway. But what I thought, ‘No, I won’t. I’ll give it up.

So did you give it up kind of overnight or was it a gradual thing?

The first year I gave it up and then I crept back and had a few here and there. Not a lot, I never bought any. But I’d say to my sister, ‘Let me have one of your cigarettes?’ ‘No, you mustn’t. ‘Come on, come on. ‘No. ‘Go on. ‘No no, you know it’s not smoke-related what I’ve got. Then when I went in and had the pneumonia – because my breathing was pretty even keel then – but when I went in and had the pneumonia and come out with my breathing, then it frightened me. I thought, ‘No. So I haven’t smoked since. No I haven’t even asked for one or anything like that, no.

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Others said they had not changed their lifestyle because of the leukaemia.

*CML – Chronic myeloid leukaemia

CLL – Chronic lymphocytic leukaemia

Recurrence or relapse

The aim of leukaemia treatment is to achieve remission - a state in which no leukaemic cells can be found in the blood or bone...

Work and daily life

Treatment for acute leukaemia requires spending long periods in hospital, so people who had been working had to take extended sick leave from their jobs...