Interview 12

Age at interview: 38

Age at diagnosis: 32

Brief Outline: She was diagnosed with chronic myeloid leukaemia after experiencing tiredness, itching, diarrhoea, a cough and breathlessness. She declined a bone marrow transplant and takes Glivec alongside a range of complementary approaches to support her body.

Background: She is a shopkeeper and businesswoman. She is divorced with one child aged 11. Ethnic background: White British.

More about me...

She was starting a new phase of her life after being divorced but felt inexplicably tired despite having eliminated all the stresses from her life. She thought she was unfit so got herself a personal trainer who told her she wasn’t trying hard enough. She had a variety of symptoms that she didn’t connect together at the time, including dry skin and rashes, diarrhoea, a cough and breathlessness. She attended her doctor’s practice on several occasions about different symptoms and was at one point told she had asthma and was given inhalers, although having experience of asthma in her family she was certain it was not that.

 

A friend suggested she try a different surgery, which she did and within days had a blood test done after which she was telephoned and asked to go to hospital. She asked why and was told she had chronic myeloid leukaemia. At the hospital she asked many questions including what her life expectancy would be without treatment, which was estimated at about two years. She was concerned to make the best treatment decisions for the sake of her five-year-old son. After having some of her white blood cells filtered off it was suggested she should have a bone marrow transplant but she was reluctant because of the risks involved, despite both her siblings being matches. She found out about a new drug called Glivec that was not yet available in England and managed to obtain it on the NHS and has taken 400 mg each night for the last six years. Once Glivec was approved by NICE she transferred to receiving it privately through her Bupa insurance.

 

She has combined her conventional treatment with a range of complementary approaches to support her body. These include yoga, Chi Kung and reflexology. She has also adapted her diet to exclude alcohol, dairy foods, pork, fried foods, parsnips, parsley and celery, and eats only organic food at home. She also takes a food supplement called IP6 with inositol made from rice that is claimed to enhance immunity and reduce cell proliferation.

 

When her second marriage broke down she became very stressed and some of her original symptoms recurred but she ended the relationship and put her body back on track through complementary means.

Despite being sporty and in a happy new relationship, she couldn't understand why she felt so tired before her CML* diagnosis. She couldn't cope with physical exertion and kept falling asleep.

I’d had a pretty miserable marriage. Came out of it and really spent some time getting my life back together. I sold a property in London so I was ready to do things I wanted to do. But I was tired, seriously tired, and I couldn’t understand why because all my worries and stresses had gone. I was divorced, the husband had gone, I’d got a super new chap in my life and money which meant I could do what I wanted. And so I got a personal trainer, I thought I wasn’t fit enough. And I remember him saying one day, ‘Come on you’re just not trying hard enough.’ And I was giving it my all. I’ve always been sporty. And friends said, ‘Ah yeah but you’re getting older.’ And I thought, ‘No.’ You know, Margaret Thatcher survived on four hours sleep a night and I’d always been a night person.

 

There was clearly something going on and, yes I was a mother but by four o’clock in the afternoon I actually couldn’t get upstairs. I was crawling on all fours. I fell asleep reading to my son every night. However many people told me I was fine, I was not fine. I remember going to one friend’s house and she said, ‘How are you?’ I said, ‘I’m exhausted.’ And she said, ‘Oh people don’t really want to know how you are.’ It was so so hard to get out of bed. I knew there was something wrong.

After entering a new relationship she felt that the symptoms of her CML* were returning.

You said to me earlier before we started the interview proper that you nearly had a recurrence at one point. What brought that on?

 

I remarried and it was a disaster. And until that point I had stayed very true to everything I was doing. And I married someone who had said he understood, and the minute the ring was on my finger he decided I wouldn’t see any of the people I’d been seeing to help me, that my diet that he’d so supported was cranky, and he had a horrible temper and when I asked him to leave he wouldn’t go. And negative energy is extremely damaging to us and at the beginning I got very upset and then I had to draw myself back and I realised. I mean I think having awareness in your body as well is a great thing that these complementary therapies bring to you. So whereas the first time round I didn’t listen to my body, this time I listened and I could feel everything that was going on inside and I was in a lot of pain, a lot of aches, I was coughing hugely again. Everything was going, it was like I was unravelling.

 

And I knew I needed to get back to the things I was doing but it was very difficult to do it with someone here who also didn’t work so he was at home the whole time. But again, I just had to try, and when I’d realised what was happening I had to think of my son and a way to get out of that situation. And I think what I did better was because I knew what would help me I didn’t lose control like I did the first time. But it was quite scary to see how quickly one could unravel, and knowing it was happening by my feelings, which I now recognised. Itchy skin, that was one thing that came back. My skin got terribly itchy again. So yeah it was just all the symptoms I’d had the first time round were coming back.

 

Did you present all that to your doctors or did you just control it with your complementary things?

 

No. I just controlled it. I mean, if you go to the doctor they’ll say, ‘Oh well maybe you’ve got a cold, your blood results are a bit out, so maybe you’ve got a cold, maybe you need some potassium.’ I mean I’ve been given potassium tablets at one point and I went home and I ate bananas and chocolate and that worked just as well. Or sometimes too much sun or not enough sun, things like that. And if I’m given results that are wonky I will try and sort it myself first. I have never actually taken anything else other than the Glivec.

She has tried many different complementary therapies but regularly uses yoga and Chi Kung to help her breathing, and reflexology to support her immune system.

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 who’s 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.

She believes that alternative approaches could cure disease but not in a western lifestyle so recommends combining complementary and conventional medicine.

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 who’s come off them in England or in the Western world, in America, has never retained the same level of remission.

Her son (now aged 11) is very understanding' he makes her cups of tea, leaves her alone when she is tired, and scolds her when she is tempted to deviate from her strict dietary regimen.

You said he’s very good at looking after you. What kind of things does he do?

 

Well he’s a very understanding child. I mean at the beginning he’d make cups of tea for me, but he will understand if I am tired, and I do tire more than I used to, I need my sleep. He won’t try and drag me out of bed or he’ll go and do - we’ve got ponies - he’ll go and muck out the ponies, he will understand and he will be quite protective. Oh, I don’t eat chips because I don’t eat fried food, but sometimes he’ll have something with chips, and if I go to pinch one off my plate he says, ‘No mummy. You can’t. It’s not good for you, it’s your illness.’ And he will often pick me up if I go to do something, because for two years I was so religious and now I’m slightly weaker, and if he’s here he will keep me on track.

She has cut out dairy foods, fried foods, processed foods, foods containing psoralens, and eats only organic food, lots of fresh fruit, nuts and vegetables and small amounts of meat.

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 basic food.  And simply cooked, steamed, grilled, and yes it’s time consuming and if people say it’s more costly well I don’t believe it is if you eat like that.  But [coughs] you often hear people, you know, somebody’s child has got a cancer and they’re trying to raise tens, often hundreds of thousands of pounds to send send them to America.  Wouldn’t it be better that they’d spent a fraction of that on feeding them decent food in the first place.