Interview 42

Age at interview: 65

Age at diagnosis: 59

Brief Outline: Diagnosed with colorectal cancer 1995. Under went surgery, permanent colostomy and radiotherapy.

Background: No details given.

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She had always suffered from constipation but started to notice blood in her stool. She immediately made an appointment with her GP who prescribed her laxatives which unfortunately did not alleviate her symptoms. After a series of appointments and on-going bowel problems her GP referred her for a barium enema. Her results came back inconclusive and were not followed up after that. Her stomach became protruded and she continued to regularly visit her GP to voice her concerns. However, her GP continued to repeatedly prescribe laxatives. Eventually, she was referred back to her consultant for another barium enema. She felt that her consultant thought it was all in her mind but she knew that something was wrong. The thought that it might be cancer had never occurred to her as she had felt well and been able to go about everyday life as normal. She went on a family holiday to Spain but found that her stomach was severely extended and hard to the touch on her return. She went straight back to her GP who referred her for a biopsy. When she went back to see her consultant he refused to do the biopsy but agreed that he would do another barium enema. When the results came back clear he said that he would have to do a biopsy. She had to wait 6 weeks for the biopsy. During the biopsy they found a polyp, which she did not realise could be cancerous. She explained that she had felt relieved to find out it was ‘just’ a polyp and carried on with life as usual. She received a letter from her GP asking her to come in at earliest convenience. She had not been concerned about the biopsy so was devastated to be diagnosed with colorectal cancer and found it difficult to digest. 

 

She was referred to a surgeon who she found difficult to talk to. She could not understand what he was telling her, and felt upset and frustrated. She found the operation traumatic and hadn’t known what to expect but was just happy to get it over and done with, and have the cancer removed. She felt shocked when she first saw the stoma. She was in hospital for a little over two weeks for the surgery. She then started on radiotherapy. The first four treatments made her feel terribly ill. She suffered from sickness and diarrhoea, and was unable to eat or drink. She felt that she started to go downhill after treatment rather than improve. A month after her treatment finished she went back to see her radiologist. She was feeling incredibly ill by this point. After conducting tests, they found a mass and she underwent a laparotomy. During surgery her bowel was perforated and she was in a worse state than before she had the operation and was unable to walk for 3 weeks. She felt helpless. She returned to hospital due to persistent vomiting and felt that hospital staff did not realise how much pain she was in and wished they had helped her with daily tasks like going to the toilet. Her stoma then prolapsed, she felt petrified as she didn’t understand what had happened. She didn’t want to go back to hospital and felt like giving up. She was in hospital for the next 6 weeks due to infection. She was unable to eat or drink and had to have a blood transfusion as well as another operation to remove more of her bowel. A while afterwards her stoma receded and she returned to hospital, where they moved her stoma to the left side. Her health has considerably improved since then. More recently she experienced another cancer scare but results showed it was a collapsed lung. She felt relieved. 

 

She found it difficult to adjust to having a stoma. She explained that she feels unclean and dirty. She said that she has a constant fear of having accidents with her stoma bag, which has heavily affected her social life and led to anxieties about attending family events. She had felt embarrassed by the noises it would make but has adapted her diet to manage the noises. Her friends and family were a great support but she felt that the support disappeared over the course of her illness. She explained that she did not wish to put her problems on her family members, especially as her daughter-in-law has been battling breast cancer. She wanted to deal with it by herself. She received invaluable support from a local support group. She found it helpful to have a dispassionate source of support separate from her family that was able to understand what she had been through. She was able to access one-to-one counselling as well as being able to enjoy having a laugh again with other people who have had similar experiences. She went once a week and found it comforting. The group would go on social outings and trips, as well as fundraise. She explained that she never felt out of place or uncomfortable when she was with the group. She believes that it is important to not only voice your concerns but push them as well, to make sure that you are being heard. She explained that she had experienced symptoms for two years before she was diagnosed. She felt that what she went through could have been avoided if only the consultant had dealt with her concerns sooner. She emphasised that she had very little support from a number of health professionals along the way which made her experience challenging. She explained that although she’s had a lot of complications along the way, she is still here to tell the tale. She now takes each day at a time. 

 

 

Since having a permanent stoma after her colorectal cancer surgery, she has felt worried about going out and the stoma coming off or leaking.

I used to go out quite a lot more socially than what I do now. I mean I hardly, unless it’s with the group I mean I don’t go out socially at all.

 

Is that because you don’t feel well enough?

 

No I think it’s more to do with the stoma

 

Right.

 

Because, like, I mean obviously I’ve had a lot of accidents with it and even now I still do. I mean and I think, like, when we have the Christmas lunch … I’m always frightened that the bag is going to come off and, because it has happened, and that does prevent me, like when I know it’s a social evening, like, eating, a few drinks, I mean obviously I don’t drink that much now, but I can’t do it because I’ve got the fear of the bag coming off. So I think that basically is what’s stopped me from going out socially.

 

Like my niece got married in May and I dreaded it, as much as I was looking forward to it because she’s my Goddaughter I was dreading it because I thought I bet this will go wrong, I bet that’ll go wrong, I’ve always got that fear.

 

Is that because of the stoma?

 

Mm yeah.

 

Did you go to the wedding?

 

Oh yes.

 

Was it okay?

 

Yeah I thoroughly enjoyed it, you see but I didn’t eat anything and I didn’t obviously have that much to drink. I mean I had to drink because it was a boiling hot day but I was just sipping water you see, whereas I do, I used to like a drink when I went out. But I mean I now, you know, I’m frightened in case of an accident.