John - Interview 09

Age at interview: 77

Age at diagnosis: 61

Brief Outline: John was diagnosed with colorectal cancer in 1993. He received surgery, chemotherapy and radiotherapy, and then extensive surgery for a duodenal ulcer in 1999.

Background: John is retired. He is married with two sons. Ethnic Background: White British.

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John was diagnosed with bowel cancer 17 years ago. He received surgery, which removed a large part of the large bowel, chemotherapy, and radiotherapy following surgery which resulted in the breaking down of blood vessels in his stomach. He also had major duodenal ulcer surgery which left him with more problems due to the extent of the surgery and the change to his bowel habits. The surgery left him with continuous diarrhoea due to the lack of sphincter muscles. He has taken drugs regularly for 17 years to control his diarrhoea, and has to make sure he is near to a toilet or learn to use facilities when they are available. It’s something he has to live with for the rest of his life. His eating habits have had to change, and he now eats small amounts regularly to control the passage of food through his body. 

 

John and his family received very little help with physical or psychological effects of the surgery from the oncology department of the hospital that performed the surgery. He mostly got information from a friend who was a nurse and got a lot of information through books and magazines. 

 

John has more recently developed Type 2 diabetes, which is a bigger issue for him nowadays than the cancer. 

 

He was happy at the end of regular hospital follow-up, as the cancer was behind him and he could move on. He and his wife can relate to other people with cancer and try to be positive about his recovery. Other people with cancer sometimes ask them about his experience and he is happy to talk to them. He thinks that a positive attitude was one of the factors that got him through. Having had cancer has reinforced and strengthened the strong bond he has with his wife and sons. It also changed his priorities and he and his wife decided to do things that they might have otherwise put off. 

 

He thinks of himself as ‘cancer recovered’ instead of ‘cancer survivor’ as it’s a more positive phrase. His main message for other people with cancer is ‘positive thinking’. 

 

John had colorectal cancer and is now left with persistent diarrhoea and flatulence for which he...

Now that unfortunately left me then with only one set of muscles to retain bodily fluids etcetera, and because of that I get continuous diarrhoea twenty-four seven, fifty-two weeks of the year, and have to have drugs to control that. And that obviously has an effect on sometimes what we’re able to do or what I physically feel like. 

 

I have to eat very small amounts regularly because I only have half a stomach and the rest was pulled to make extra pipework. So we lead a slightly different lifestyle now, far more, far quieter, far gentler.

 

I can’t, unfortunately, digest salads and green vegetables, so I have to, I replace the vitamin C by a very good lot of fruit instead, which seems to work. And for most days I can manage with four codeine phosphate a day. Just occasionally, if things get very bad, I may go up to six or even eight just for a day or two days. And I have to make sure that I’m fairly close to a toilet if I need to, although one has learnt, if you like, to use those facilities when they’re available and I always carry some additional drugs with me wherever I go. So those two drugs were responsible for the ability to control the diarrhoea. 

 

So in terms of being able to go out and do things that you used to do before, has having this chronic diarrhoea impacted on your life?

 

It did initially. And I used to find it quite difficult to get round eighteen holes on the golf course for a little while but I think that that was before I learnt in fact to control it at the input food stage more. I tried to still continue to eat in my old habits and hadn’t learnt to eat small and often. 

 

Eating small and often certainly helps in that direction as well and I have occasionally, occasionally I might well take four pills in the morning before I’m off to the golf course to make sure I’m okay. But now I seem to be able to get round eighteen holes of the golf course.

 

Since his extensive surgery for bowel cancer seventeen years ago, John and his wife rarely go out...

The diarrhoea is a nuisance, you know, and I can’t eat a good salad anymore or green vegetables, which I used to enjoy very much. And I can’t go out to dinner very often. We don’t go out to dinners in the evening very often. 

 

I have, in fact, just booked to go to a [local county] dinner with a good friend, a neighbour who is chairman of [local district] this year in local government and he’s having an annual dinner in a few weeks time and sent me the invitation hoping that I would go, and we had to give it some thought before we decided to go or not because it’s seven thirty in the evening, by which time we don’t normally eat. Secondly, it’s a four course dinner, which I won’t be able to eat all the dinner, all of it by any means, and we had to pre-select the menu. And I will be very tired by the end of the evening. Fortunately, I’ve still got a dinner jacket and bow tie that I can wear, I think and we will enjoy dressing up and going out for the evening and we’ll be amongst friends. 

 

They’ll probably be surprised to see us there because we don’t do it very often, but I know that [name] my wife enjoys those sorts of functions and so forth and I’ll probably feel uncomfortable for a couple of days afterwards, very tired and maybe my digestive system won’t work properly. So we don’t, so it’s the reason we don’t do it often but we thought, I thought, well, we should just occasionally do things, not give them up altogether otherwise one retracts and goes back inside one, so often one wouldn’t do anything whereas I think you’ve got to push yourself to do things occasionally. So we’re going to push ourselves to do that one.