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Ovarian Cancer - Patient Narratives (c) www.healthtalkonline.org

 
 
1. Discovering you're ill: Symptoms and diagnosis
Image A Doctor explains that symptoms usually occur when ovarian cancer is already advanced and that the symptoms may be caused by other things.
Image Attributed her symptoms to mid-life changes.
Image Attributed her symptoms to stress.
Image Attributed her symptoms to irritable bowel syndrome.
Image Attributed her symptoms to bowel cancer.
Image Experienced prolonged treatment of symptoms before referral.
Image A Doctor explains that it's difficult for GPs to recognise which women with symptoms have ovarian cancer and that diagnostic delays are inevitable.
Image Did not attribute her symptoms to anything serious or gynaecological.
Image While waiting for blood test results had to go into hospital as an emergency with a blocked bowel.
Image Her cancer was discovered during infertility investigations.
2. Learning the diagnosis
Image Did not expect her diagnosis, which she was told after a scan.
Image Was warned that she might have cancer, which the operation confirmed.
Image Thought her diagnosis was serious because so many health professionals came to her bedside after the operation.
Image Overheard her partner telling someone else the diagnosis while she was still semi-conscious after her surgery.
Image Was asked to phone the hospital to receive her results and realised then that there was a problem.
Image Found out her diagnosis accidentally when visiting her GP for another problem.
Image Guessed the diagnosis was serious from the speed at which things happened at the hospital.
Image Guessed her diagnosis was serious from what the ultrasonographer said, and her urgency to give the results to the GP.
Image Guessed her diagnosis from what the gynaecologist said.
Image Realised what her diagnosis was after reading the ultrasound report.
Image Worked out what her diagnosis was by searching the internet for words used by the health professionals investigating her case.
Image Felt her diagnosis was delivered insensitively.
Image Felt her diagnosis could have been delivered at a better time and place.
3. Surgery
Image Describes how she only had a cyst and one ovary removed.
Image Her surgeon warned her that he might have to do a colostomy as well as a hysterectomy.
Image Some of her cancer was left in as it was too difficult to remove.
Image Had a hysterectomy and then a second operation to remove the omentum in case of spread.
Image Had a second operation cancelled because her doctors decided to monitor her 'borderline' cancer instead of treating it.
Image Had two operations: first an emergency operation to unblock her bowel, then a hysterectomy.
Image Criticised the ward environment.
Image Being the only cancer patient on the ward was difficult.
Image Did not get prompt pain relief after her operation and was moved to a different ward.
Image Describes her experiences of catheters, drains and drips after her operations.
Image Felt unwell and had post-operative pain due to the size of the incision.
Image Recovered quickly from surgery and avoided strenuous activity by getting her mother to help with childcare and housework.
4. Chemotherapy
Image She knew little about chemotherapy before she had it
Image Describes the process of being given chemotherapy and other drugs to minimise unwanted effects
Image Her veins were difficult to find, making the chemotherapy injection difficult.
Image Describes how chemotherapy frightened her and how it brought out the good in people.
Image Describes how she passed the time during chemotherapy treatments.
Image Spent hours travelling to the hospital for chemotherapy while feeling ill.
Image Her body's reaction to chemotherapy followed a pattern.
Image One can plan one's life around chemotherapy treatments because the body reacts similarly after each treatment.
Image The more chemotherapy she had the more ill she felt.
Image She could work on days when she felt well between chemotherapy treatments.
Image Explains her anxiety when waiting for results of blood tests before being allowed the next chemotherapy treatment.
Image A chemotherapy treatment was postponed because blood tests showed she had not recovered enough to cope with it.
Image Had five courses of four different c
5. Coping strategies
Image When she no longer had cancer she wanted to put the experience behind her and return to normal life.
Image Had read that positive thinking would not cure cancer but believed it helped her cope and to feel better.
Image She never doubted that she would get over the cancer.
Image Family, friends and doctors commented that she never complained about her illness.
Image Saw no point in worrying about dying from cancer: she preferred to live her life to the full.
Image Was determined to remain positive but acknowledged that had been hard when the cancer returned.
Image Couldn't be positive all the time but sometimes when she had bad days other people made her feel guilty.
Image Reading about other people's experiences helped her to feel more content.
Image Sad stories of other people's experiences were unhelpful.
Image At first found out all she could about cancer but later chose to rely on her own spiritual resources.
Image Frequent walks in the fresh sea air helped her to come to terms with her illness.
6. Impact on others
Image Said that people don't know how to face you or what to say because they assume cancer means death.
Image Friends in the African Caribbean community advised her to pray rather than go to the hospital for treatment.
Image Said her husband felt bitter because they had not been advised about saving eggs before her hysterectomy.
Image Her husband found it difficult to show his feelings or talk about his fears.
Image Her husband used crying as a release and coped with running the home and working while she was in hospital.
Image Her husband had a series of small strokes and depression and could not look after her.
Image Thinks family carers have a hard time because they have to take on new roles and have little support.
Image Her three children reacted to the diagnosis in very different ways.
Image Her nine-year-old daughter wrote her a poem on learning the diagnosis.
Image Her husband, parents and brothers cried with her on learning the diagnosis.
Image Received visits, cards and flowers from friends and had plenty of people she could phone if she wanted to talk.
Image Had a network of friends and family who came and looked after her after her operation.
Image Explained that her husband did the housework, taking time off when needed, and mopped up after chemotherapy made her sick.
Image Her husband continued to go out to play bridge twice a week as a break from his caring responsibilities.
Image During her chemotherapy she had great support from friends, but it dried up when she finished her treatment.
Image Would have liked more emotional support from family, friends and colleagues during her treatment.
Image Gained support from her Christian faith and her prayers.

 

 

  
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Psycho-oncology.Info

C/O Depart of Cancer & Molecular Medicine

Leicester Royal Infirmary & University of Leicester

Leicester LE5 1WW

 

Alex Mitchell, Consultant in Psycho-oncology ajm80@le.ac.uk

Chris Coggan, Senior Nurse Practitioner in Psycho-oncology  chris.coggan@leicspart.nhs.uk

Sue Todd,   Nurse Practitioner in Psycho-oncology  sue.todd@leicspart.nhs.uk

Julia Middleton, Associate Specialist in Psychiatry  julia.middleton@leicspart.nhs.uk