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Interview 14

Age at interview: 53
Age at diagnosis: 51
Brief Outline: Diagnosed with colorectal cancer and secondary cancer of the liver 1999. Under went surgery, temporary ileostomy, chemotherapy, and radio frequency ablation.

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For a freelance professional having income replacement insurance has been vital.

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Yes I'm extremely fortunate, this is the only good thing in all of this business, in that many years ago when I went freelance I took out a permanent health insurance, which means that having become ill and not being able to work, they pay me a monthly income. 

Strangely enough if I was in salaried employment I would be able to work because if I was doing a nine to five day, I could then take the odd days off for say chemotherapy and so on. But because I'm freelance and my contracts only last for about three or four weeks and for those three or four weeks they're very intense and I can't just disappear for three or four days it's virtually impossible for me to work.

The difficulty of this is that the regular company or companies I work for it's been virtually impossible for me to do any work with them so for, for almost coming up to eighteen months, two years now, I haven't really done any substantial work at all.

But if I hadn't had this insurance I wouldn't be in this house anymore, so that would have added enormously to my traumas because of the mortgage and so on, and my son probably wouldn't be at the school he's at any more, which is a private school. Which also would have added to the trauma so you know, that's one of the very good few financial decisions I've ever made.

 
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Explains how he found out about radiofrequency ablation and describes the procedure.

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I thought and hoped that this was not only a very benign, or fairly benign alternative to surgery, but I thought if they can zap the tumour surely that's the, the end of the, potentially the end of the problem. They made it quite clear to me that it was palliative and not curative which means that it was as I say a "quick fix solution", which I found depressing because that, that means and as they, as they said themselves it means almost inevitably these tumours can grow back again.

The needle is guided to the centre of a tumour, um, radio frequency is, is put through that which in effect, burns the tumour. When I woke up from surgery I had nausea but that was from the anaesthetic and all one had was a, some large plasters on, on my right hand rib cage.

So there was, there was hardly any pain or discomfort at all, it really wasn't noticeable by the time I went home the next day, from that point of view I felt fine. However, because the, the tumours have been, carbonised to some extent within the liver the body had got to get rid of those poisons and for the next four or five days it's like having flu in that one has a temperature variation.

So one time you may be feeling very sort of hot and sweaty, particularly in the middle of the night and another time all cold and shivery. That was it, it wasnit what I call a traumatic procedure, it was certainly no worse than having, not much worse than having chemotherapy.

 
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He has decided not to tell his son about his illness.

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The primary concern in this particular area was our son and him being at that time um nine, ten years old, we decided not to say anything to him about it at all. On the basis that if it ever became really serious and I was given a, I was told that it was going to be terminal, at that point we could let him know and his, he wouldn't have to go through the two or three years, or whatever it is, maybe five or ten years, of, of agony of the association of his father, death and cancer.

So this was a, an, an early decision that we made which we've never ever had doubts about, although other people have thrown doubts on it. But we're quite happy with that decision and we've decided not to tell him anything about it.

He knows that at times I've gone into hospital obviously. We've been very vague about it and just skirted around the issue and said that there was some kind of tummy problem I had and the doctor didn't know what it was and they had to make some exploratory examinations and so on.

So he knew that his daddy was ill but never, we never, we've never ever mentioned the word "cancer" in front of him, because if we did um all sorts of things could come from that, he could be taunted at school.

As various news, newspaper and radio articles come up, mentioning the death of various famous people from cancer he would obviously associate it with his father and it would cause him an enormous amount of distress.

 
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Argues that the separation of mainstream and complementary approaches to cancer is regrettable.

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The oncologist, or the oncologist I've met and I've also spoken to other people who've had similar experiences, they are very much of this attitude of, "We will provide the medicine and make you better - or not", I think is a great tragedy that there isn't joined-up, joined-up medicine between a mainstream and complementary, and I'm not talking about alternative, I'm talking about complementary, and that, that you know a lot of people haven't even heard of The Bristol.

And it may be, it may be that the, The Bristol or complementary medicine doesn't work, for some people, or even the majority of people, but if it helps some people by increasing their will to live or increasing their immune system, self-strengthening their immune system, even if it saves a few lives, then it's a great pity there isn't, that mainstream medicine in, in the main is not acknowledging that there is a, a link between mind and matter, or mind and body in this particular case.

 
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Relates a discussion amongst cancer patients who all felt that their illness had been triggered...

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And it was interesting talking to other cancer sufferers there and in the course of the two or three days, when I was chatting to people, it was evident that every single person I spoke to - and that was the majority of the people there had had some serious traumatic experience in their lives in the eighteen months to two years leading up to their cancer.

Was that true for you as well?

And it was true for me as well. In the, in the year or two leading up to my diagnosis, because I'm freelance I, I've, because work was getting less and less, I was concerned about that and earning, and concerned about maintaining my income and therefore I was taking work which is slightly outside my, my normal area and, and overcompensating and taking on too much work.

And that meant that I was working you know late evenings and weekends and it also then put a lot of pressure on me domestically. At the time my partner was putting a lot of, correctly or incorrectly, was putting a lot of emotional pressure on me because I wasn't available to be part of the family. And I'm fairly convinced that that sparked the whole thing off.

 
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He explains how well-wishers can become exhausting.

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Initially, when this information hits the news it's like a bereavement and particularly in the first two or three weeks when you've got people phoning up, because people outside the family, when they hear the news they feel obliged to do something. They can't, if they hear that you've got cancer they can't just ignore the thing and not phone you up and therefore they phone up and you know, in terms of commiserating with you.

The problem with that is you're starting to come to terms with the, with the, with the awful truth of what's happening but you can't, when someone speaks to you about it you've then got to re-live the whole thing and go through the, you've got to bring the whole, the awful thoughts you've had to the front of your mind so that you can, you can speak to someone about it. So it's actually quite traumatic.

What we discovered is the best solution for people who hear about a close friend or relative who's in a similar situation is for them to send a postcard, and the postcard says "I'm really sorry to hear about this, if you want to call me, call me whenever you want, you know, I'd like to give you as much support as possible."

And this, I've now realised is actually the best solution because then the cancer patient can decide either to call or not to call and in his or her own time. And can compose their mind rather than getting that call at eight or nine o'clock at night when you're really tired and you want to go to bed and suddenly you've got to talk to someone and reassure them.

 
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He wished he could get all his consultants together at one time to discuss treatment options.

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After the first bout of chemotherapy when it was a question of "What do we do next?" and how we were going to treat the primary tumour, he gave me a choice, he said "You can either have surgery or you can have radiotherapy. You can make the decision."

But I went to see a radiologist within the hospital, he told me that that, not only would it be extremely unpleasant because of the high doses they'd have to give me, but there was also no, there was no guarantee that it would resolve the problem. Plus, there may be other long-term side-effects such as incontinence, and so on, because of the area they were dealing with and he said "If it were me, I would go straight for the surgery."

So I then spoke to the surgeon and decided to go for surgery. What I really wanted to have done, and I kind of felt that it was, it was within my rights to have this, was I wanted all three of them, all the experts sitting around a table with me and one saying you know "OK we can try this?" and the other one saying "Yes but why don't we do this?" and getting all of the information. I didn't really want to go round chasing all of them and getting his story, and his story and his story.

And because this is a life-threatening disease, I mean it's serious, and because I was paying privately and they were all being paid for their advice, I kind of almost felt that it was a fair enough thing for me to ask although I, I made a slight attempt at this but obviously got nowhere at all and I though it was quite, you know in any other kind of business or in any other area, for something as serious as this, you would have, you would have been able to have got the various parties around a table to discuss it, but I wasn't able to do that.

 
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Explains how knowing the risks of radiotherapy led him to choose surgery instead.

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After the first bout of chemotherapy when it was a question of "What do we do next?" and how we were going to treat the primary tumour, he gave me a choice, he said "You can either have surgery or you can have radiotherapy. You can make the decision."

And I probably said to him, and I wanted to say to him if I didn't "I'm not an expert on this, I don't know what, I don't know what the best thing to do is, you're the expert you should be advising me."

But I went to see a radiologist uh, within the hospital, he told me that that, not only would it be extremely unpleasant because of the high doses they'd have to give me, but there was also no, there was no guarantee that it would resolve the problem.

Plus, there may be other long-term side effects such as incontinence, and so on, because of the area they were dealing with and he said "If it were me, I would go straight for the surgery." So I then spoke to the surgeon, and decided to go for surgery.

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