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Interview 51

Age at interview: 54
Age at diagnosis: 48
Brief Outline: One day, at a church barbeque, a complete stranger, who was a GP, approached him and pointed out that there was a lump in his neck and recommended him to go to his GP. A few days later his GP examined him, announced that he had lots of swollen glands suggesting he possibly had a serious disease, and that he should go to hospital immediately. He went home to tell his wife and family and then on to hospital. He was examined by a consultant who said he probably had lymphoma but needed a biopsy on t
Background: No details given.

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He explained that as he had suffered a heart attack in the past and had a history of diabetes he was used to monitoring and being aware of things happening to his system. He felt something was wrong when he noticed both fresh and old blood in his stool. He eventually made an appointment with his GP, who referred him for a barium enema and further tests at his local hospital. At a cardiology appoint his consultant requested his results for him and informed him that they were abnormal. He was then referred to a colorectal consultant and was seen within a week. He explained that there was no mention of cancer and that it was referred to as a blockage in his colon that needed to be removed. 
 
He was admitted to hospital for surgery resulting in a temporary ileostomy. He explained that he had felt concerned after surgery about how much they had opened him up but relieved that the blockage had been removed. He explained that after surgery he had to learn how to manage his temporary ileostomy but that he received little instruction and support on how to care for his stoma, and only found the literature useful up to a point. He said that he had felt distressed and embarrassed as the hospital staff were able to see his waste coming out in liquid form. He was eventually discharged and provided with supplies to manage his stoma. He found that he was experiencing severe pain in his rectal area when at home despite taking painkillers. His aftercare nurse was concerned that he wasn’t showing signs of improvement and telephoned his consultant. He was readmitted to hospital for emergency surgery as they had found a post-operative abscess at the rectum site. He lost a lot of weight and was left with a permanent colostomy as well as his temporary ileostomy due to damage to the digestive tract. Although he was distressed he felt too weak to be concerned. He was in hospital for 6 weeks. He found that at first it ruled his life as it would balloon and burst, and he felt quite depressed. He explained that learning to manage both his ileostomy and colostomy bags was a steep-learning curve. He had found his wife was stalwart and an invaluable source of support to him throughout the whole experience. He believed it was important to set himself daily goals, such as getting up and out of bed. He said that they don’t explain how much it will impact on your life and your way of living. In particular, he felt that no one ever discussed how it would have an effect on his sex life. He found that after radical surgery it took time to regain some form of normality, not only with intimacy but also everyday tasks, such as driving a car and food shopping.
 
He felt that having the bags impacted negatively on his social life and self-confidence. He explained that although people never took offence, he would worry about extraneous noises from the bag as he had no control over it. He described how it has stopped him doing certain things such as swimming. He also had volunteered at a number of charity organisations but was unable to remain involved with them all. He described how he went back to a reasonable normality after the reversal of his temporary ileostomy. He felt that his outlook was brighter and he started to gain weight again. He found the colostomy bag easy to manage and unobtrusive. He finds great comfort in being able to interact with his family as normal. He explained that he pushed himself to get better as he has a special needs child and wanted to be able support his wife in looking after her. He found some of the best support from a spiritual point of view, his family and friends would pray for him. He found this reassuring. He also joined a foundation and supported other patients when he could, as he feels it is important to show other people with similar experiences that there is a brighter side and you do regain a life balance.
 
He felt that it was important to be honest with his family, especially his children, about his condition. His family had found the ‘missing’ formal diagnosis difficult to deal with and this led his wife to distrust that the cancer was gone. He did find that his condition helped cement family relationships. He became closer to his sister and found her a great comfort throughout his experience. He explained that he isn’t frightened of the word ‘cancer’. He understood the dangers but felt confident that they had caught it early. He feels that health professionals need to be more open in explaining cancer as it is better to know what you are dealing with and what action is necessary. He believes it is important to be positive and has an optimistic outlook on the future. He feels confident about where he is at now.
 

 

 

He had surgery for colorectal cancer six years ago and has daily pain as a result of nerve damage...

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He had surgery for colorectal cancer six years ago and has daily pain as a result of nerve damage...

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During the second operation they also did nerve damage, which is irreparable and because of that nerve damage I have had to get pain relief medication because I’m in pain every day. And it was so severe this year I had to spend a week in the hospice, the local hospice, to get the pain control sorted out so that I wasn’t sleeping all day on too high a dosage and I wasn’t going back into pain because of too low a dosage, to get the pain control at a level where I could function socially and interact with people and, for instance, drive the car, I couldn’t drive the car legally. 
 
And but I can function quite well, I can, I can go about and I can interact with my family and watch television and I have a reasonably good night’s sleep maybe two or three times a week. I do still have the pain in my back, which disturbs my sleep, but apart from that, at the minute I’m doing quite well.
 
Do you use any other techniques which aren’t medication-based to keep control of your pain?
 
No, if the pain becomes very bad the only other way that I can control it is to go to bed for a couple of hours and rest, and that’s the only thing that alleviates the pain and brings it back down to a stage where I can tolerate it. Rest really is the best thing.

 

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