Interview 29

Age at interview: 63

Age at diagnosis: 42

Brief Outline: Was diagnosed with non-Hodgkin's lymphoma in 1985 after finding a lump in her neck. Four sessions of chemotherapy put her in remission. She has been well ever since.

Background: Self-employed partner/director of visitor attraction, married with two adult children. Ethnic background: White British.

More about me...

She noticed a small lump on her neck and showed it to her GP the next day. The GP did various tests and told her they had ruled out all the nasties so she was not particularly concerned. However, the lump continued to grow and after a few weeks she was referred to the hospital where she was shocked to be told it could be cancer. 

While waiting for tests she sought advice from a herbalist and subsequently used natural therapies, modified her diet and gave up working, with the aim of improving her immune system. As a result she felt less tired than before and much better generally by the time she had a biopsy done, although the lump had grown to the size of an egg. She believed that her actions had had a beneficial effect on her tumour. With hindsight she realises that the tiredness may have been a symptom of the lymphoma.

At first her doctors thought she had a secondary cancer and did not know the site of the primary tumour, and implied that the outlook was bad, leading her to sell her business. She was referred to a specialist at another hospital where they told her that she actually had non-Hodgkin's lymphoma and had a 90% chance of cure. She felt so happy at this news that she believes it gave her a more positive attitude throughout her treatment than she might have had if she had been given this diagnosis originally.

She had four doses of chemotherapy, which put her into remission, and she has been well ever since. She feels that the lymphoma was the best thing that ever happened to her because it gave her a second chance to improve the quality of her life.
 

While waiting for a biopsy she stopped work, adapted her diet and used natural therapies to build...

And anyway I had an x-ray and they had me down for a biopsy. And I think it's quite important actually because I think it made a difference to me, is that I had a friend who was a herbalist, and I was panicking, the fact that it could be cancer, I was panicking. So I immediately contacted my friend and started thinking about things I could do positively to improve my body, improve my immune system. And so I did go on a month's regime where I watched my diet, I stopped working, I did various sort of natural therapies and had a very positive, started having a much more mental positive attitude. 

And so by the time I went to have the biopsy I felt better because prior to that I actually had been feeling quite tired, really tired in fact, you know, especially at night time, I didn't have the energy I should have had. And probably that was about the only real obvious signs that were different. But by the time I had the, before I had the biopsy I was already feeling much better. I was still concerned because it [the lump] was like an egg by then on my neck and I had a job hiding it. 

So what happened was they, after the biopsy, my husband, apparently the doctor spoke to my husband before they really, they thought I had a secondary carcinoma because I think although they took it out intact they didn't think it was lymphoma, they thought it was secondary because the cells, I don't know the details and one of these days I might be, up until now I haven't really, I've always wanted to forget about it, but now I'm quite confident and I would probably like to have some research done. I like to think that the cells had started changing, that in fact my body was starting to take care of it. Because a week before the biopsy I did feel that things were changing and that it was like going to the dentist with a toothache, the toothache seemed to have dulled. And I remember saying that to my husband, 'I'm going in and I feel it's changing, I feel it's going away.' So I personally believe there was a change happening. 

So you said something about doing some therapies of your own while you were waiting for your definitive diagnosis, what were they?

Well diet for a start actually, I mean I eliminated, with his advice I eliminated things like coffee, tea and processed food, and I stuck to very natural foods and high vitamin C and just mainly cutting out processed. And actually I did go to see a doctor in London, a retired doctor, that was another thing we did, who actually didn't charge much, he just wanted to help people. In fact he did, he charged four guineas which was, even in those days we didn't have guineas, it was just a joke thing. But he suggested that we try, you know, he said I should try being a vegetarian, that he would only, in fact he would only treat you if you wanted to eliminate sort of meat, because he had theories about that. But again that suited me fine actually because it was almost part of the natural stuff anyway. 

And also meditation. I used relaxing techniques and just calming myself and trying to sort of get rid of all stress. So it was a detoxing of the body really and I suppose you could say detox of the mind, but it's just relaxing the mind and just generally allowing my body to not put any obstacles in the way of the body's natural healing processes, that's how I saw it. I thought, 'Right OK, give the body every chance to do what it has to do without putting any stress on it'. So that's, that was really the practical way I can analyse the situation and went with it.

Was told she had a 90% chance of cure but woke in the night worrying and found it calming to...

And I mean throughout the treatment we did actually go into separate rooms because I found that I would wake up through the night with palpitations and real terror, I mean despite, you know, throughout the chemotherapy, although I'd been given the good news, I think the initial news was still there, there's still the scare. The fear of that was still there and so, I mean my heart would be thumping like Big Ben and so again part of trying to be positive, rather than disturb, I was in another room and I used to just, if I woke up, rather than lie and worry, I started writing a journal and I started writing, all the negative thoughts that were in my head I wrote down. And that usually helped to calm me and that was therapeutic actually and it helped. And it meant I didn't have to worry about disturbing him through the night. Some nights I wrote all night, but I just wrote out all the negative thoughts, and I had a negative and a positive side of the page. But that helped me cope with it and I suppose he knew that I was doing that, and it meant that I could actually put on a more positive face because I was dealing with it, I tried to kind of, because I was aware that he was suffering so. 

And another important part of when I was going through the worst of it, and a real scare, I remember confronting death actually, and at one point a tremendous peace, I remembered thinking, 'Well what if I am going to die? What is the worst thing I can feel?' You know, I mean what's worst? And I remember actually thinking, 'Well', it's being less scared of it, and that was quite important. But I think, I'm sure that helped actually, not being scared of death and being forced to confront it and really face up to it, and just take life as it comes. I'm sure that helps as well.

Surviving cancer was the best thing that happened to her - it gave her a second chance to make...

And from then I haven't looked back actually. I mean through the chemotherapy check-up a few months afterwards and that's it, twenty-one years on I'm here, I've got more energy than most folk twenty years younger. I still work, and I can say at this point the one wonderful thing is that having come through it, having survived it, and OK it was five/six months of not very pleasant experience, it was probably the best thing that happened to me because it gives you the opportunity to have a second chance to your quality of life, although there's always a few hiccups but most of the time you can actually put everything in perspective and say thank you, thank you for every day, the quality of life is there.

Was shocked to read a low estimate of her life expectancy in a book in her GP's waiting room;...

Again I'd just like to think that things have changed. I know that there's more information, and there's another thing actually I told the doctor, about two years on actually I was in the doctor's surgery, the local doctor's surgery and I lifted a book that was about, information about cancer. It was probably about three years on, no I tell a lie it was only the year after, because I was still very vulnerable. And I lifted this and at the back it had a list of all the cancers and the potential life expectancy. I mean this was sitting in a doctor's surgery. And I thought, for some reason I thought Non-Hodgkin's and low grade lymphoma was actually, you know, I was probably', less dangerous than others and I got such a shock when I read that I had a five year life expectancy, and this is only a year after becoming very positive and getting over the cancer' And it absolutely floored me, it knocked me for six for a few weeks. 

And it was only a few years later on that I remember speaking to the doctor and saying to him, 'You know that book really upset me'. And he went straight through and took it out. But this was sitting in a surgery, and it shows you, you put the exterior, the exterior is very confident and positive but you're still so vulnerable for such a long time. And I mean to have something like that. They're so, they have no idea, they must learn I think, I think people sometimes die before they need to because they're so scared, because they haven't been given the positive vibes. I'm sure folk who are borderline could probably survive actually with the right treatment, the right mental attitude and support.

Decided that if she wanted to hear only positive answers from her doctors and nurses she needed...

I remember asking the doctor at the time, 'Is the chemotherapy going to kill me in ten years?' And he said, 'I don't know.' And so I did learn not to ask negative questions. So you have to learn that, you have to, so you don't, you know, you want them to give you, you ask questions and you really want positive answers and you're asking questions that realistically you know they can't give you a positive answer to, so you have to learn to do that. But again because of my attitude, because of my belief that you can actually take care of yourself, and that because I understand, at least I believe I understand why I had cancer, at least the most likely cause, then it's really up to me to avoid it.