Interview 57

Age at interview: 65

Age at diagnosis: 49

Brief Outline: Diagnosed with colorectal cancer 1985 under went surgery, permanent colostomy and radiotherapy.

Background: No details given.

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She first knew something was wrong in 1979 when she noticed a small amount of blood coming from her rectum. She assumed it had been related to the shock of her husband’s accident and didn’t take much notice of it initially. In 1982, she mentioned to her surgeon when she underwent a mastectomy that she had been sporadically and progressively bleeding from her rectum. He conducted a cursory examination and diagnosed her with haemorrhoids, and said that the piles were too small to treat. She decided to ignore the bleeding for some time as she felt there was nothing they could do and didn’t want to make a fuss. In 1984, she began to feel extremely unwell and gradually felt more and more fatigued. She found daily tasks difficult and was losing a lot of weight. It was only when she was spending her nights in agony on the toilet that she reported her symptoms to her oncologist at a follow-up appointment. Her oncologist immediately referred her to a surgeon, who conducted a sigmoidoscopy and diagnosed her with colorectal cancer. 

 

She underwent surgery a couple of weeks after her diagnosis and was left with a permanent colostomy due to damage to her rectum wall, uterus wall and part of her bladder. She then started radiotherapy. During treatment she initially suffered from extremely tender skin, fatigue and long periods of diarrhoea. It was an awful time for her. After 3 to 4 weeks of treatment she eventually began to feel better. Radiotherapy caused a lot of damage. She found that she plunged into menopause and now experiences reduced bladder function where she tends to urinate more frequently. She explained that she was not told that radiotherapy would affect her fertility but that as she had completed her family it did not really affect her. 

 

She explained that having a colostomy bag was difficult to come to terms with as she is a clean and tidy person, and found the thought of it horrific but would have done anything to live. She found that she had to be careful with her diet and was unable to eat certain foods both in relation to her experiences of diarrhoea from radiation and management of her colostomy bag. She had to find a diet that suited her. She explained that she felt distressed and that she did not like her lack of control over her bowel movements. She had also felt embarrassed and self-conscious, and always felt aware of its odour. She changed her wardrobe and wore fuller clothes to hide her bag. She had always seen herself as a confident person and felt relieved when she discovered irrigation. She explained that irrigation gave her a sense of control over her colostomy, which has made a big difference and led to a better quality of life. She feels now that she is able to enjoy everything again. She explained that irrigation is a routine activity for her and usually takes a couple of hours. She emphasised that it takes time to adapt. She found that having colorectal cancer changed her self-image and ruled her life for 3 to 4 years but she has felt in control for the last 13 years. She feels that there is not enough information on alternative methods such as irrigation. 

 

Over the years she has also experienced problems with adhesions, where they would become inflamed and lead to an obstruction. She explained that they were very unpleasant and would result in severe pain, vomiting and hospital admission. She would also be unable to irrigate during these times. However, obstructions were infrequent and easily treatable with antibiotics and steroids. She is also able to manage early signs of adhesion inflammation from home with a steroid treatment. She explained that she had never been warned about adhesions and that she had been frightened when she had first experienced adhesion inflammation as she thought it was her cancer returning. She felt that it would have been useful to know. 

 

She explained that her family were incredibly supportive throughout the whole experience. In particular, she found her husband’s support invaluable. They were able to engage in an intimate relationship as normal. Although, she said that she would feel anxious about their sexual relationship despite her husband’s support. She believes that patients could do with advice on how to deal with resuming relationships, both socially and intimately, as she had never been given any. She said that she could see the value in support groups but wanted to just get on with her life. She continued work as soon as she could, fitting treatment around her working day. She found her work were very understanding and supportive of her decisions. She used positive messages and visualisation to face her cancer. She felt determined that it would not change her life and focussed on living life as normal. She found that it helped a lot and she was able to maintain a positive attitude. She found that thinking of the future, such as being able to attend her children’s weddings, helped her a lot. She believes that you can’t take life for granted and it is important to enjoy it. She emphasised the importance of seeking a diagnosis, and that you should go down every avenue available if you are concerned about symptoms you’re experiencing. It is important to not back down. She feels lucky and is happy to have her energy back. She explained that her life is more or less as she would like it to be now.

 

 

Having a stoma after colorectal cancer surgery affected her self-image and she felt more conscious of it than her husband did.

It certainly changed my self-image for those 3 or 4 years, certainly. I was very self-conscious, all the time, what I was wearing, how I looked and whether the bag would blow up, but my husband was absolutely incredible. As far as our intimate relationship goes he wasn't concerned, I was, I was the one who was concerned all the time. So it did add the stress to our intimate relationship at the time, it certainly did, not from him but from me. 

Bowel adhesions from surgery for colorectal cancer cause her episodes of pain for which she needs to be hospitalised. At first, she was worried the pain meant that her cancer was back.

So what was it like the first time this happened?

 

The first time it happened it happened in South Africa. My brother-in-law was our GP there and I came back from work and felt awful, and at about 1 o’clock in the morning my pain was getting worse. I just got into the most terrible agony and started vomiting, and we called for him and of course he rushed me into intensive care straight away. And I must say that was all we could do, and I was monitored, I was put on 2 drips, very much the same treatment as here, and I just had to wait for the pain to subside. I mean I was given, I think it was morphine at the time for the pain to subside, it was pretty acute.

 

What did you think was happening to you when you began to experience all that terrible pain?

 

The first time I got a fright because I thought what is happening, is it cancer again? And fortunately it wasn't.

 

Would it have been useful to know in advance that this was a possibility?

 

Yeah I think so, I think it would've been useful. Now I know but it's none the less very traumatic when it happens, but I can almost tell the signs beforehand now, and I can see when I'm struggling to irrigate if it's a problem and I will try perhaps twice that day to irrigate and if it's still a problem then I got straight onto the steroids. I mean with experience and time and increased knowledge gained from the doctors, because every time I get a bit more knowledge I've learnt to manage that too.

 

She had bowel and breast cancer and her offspring are all screened for it but they don't make a big thing of it as a family; one of her sons had a bowel polyp discovered and has regular check-ups.

Are your children going to be screened for bowel cancer?

 

Well my son already had a polyp in his colon and he's 42 now. This must be about 6 years ago and he has to be, you know, monitored every 3 years. He has an endoscopy or a colonoscopy.

 

How was the polyp discovered?

 

I'm not quite sure, he only told me at the last minute that he was going in to have it seen to.

 

Are your other children going to be screened?

 

Well they all know about it and my daughter, they both, both of my daughters have had endoscopies, or gastroscopies but, and colonoscopies they have been, you know, screened for it, but we try not to make a big issue out of it in the family. They know about, don't forget on side I've got breast cancer too and they have been screened for that as well.

 

And do you just leave it to them to decide how they want to handle that?

 

Yes they're adults, they're aware of it. As long as their GPs are aware of it and, you know, that they sort that out. We don’t want to make a family that's surrounding illness, because our family are generally quite optimistic and we don’t want to have, you know, them thinking all the time about cancer, cancer, cancer. Yes, we want them to get on with their lives.

 

Do you manage to do that as a family, just be a normal family?

 

Yes, yes we do, absolutely, yes absolutely.