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.