John – Interview 22

Suffering from haematuria (blood in the urine), in 2002 John was referred to hospital where a penile lump was detected which was diagnosed as cancerous. John underwent a total penectomy followed by a left groin lymphadenectomy. He currently undergoes six monthly check-ups.

John was frightened to mention his haematuria (blood in the urine) to his GP so waited until he went to see the nurse for his six monthly diabetic check-up. He was referred to a Specialist Penile Cancer Centre where they detected a small lump under his foreskin which the consultant diagnosed on sight as being cancerous. He was told he would have to have surgery but was ill informed as to its extent a total penectomy. Post operatively, he was seen by a Macmillan nurse who talked about chemotherapy as a future treatment option, but remembering a friend’s bad experience of chemo’ he refused.

A few weeks later John was told of the possibility that the cancer could have spread to his inguinal lymph nodes. A biopsy (carried out simultaneously with the repair of a pre-existing hernia) showed that his left inguinal lymph nodes were indeed affected. He then underwent a left inguinal lymphadenectomy which unfortunately was complicated by a wound infection which necessitated a readmission to hospital. However, once there was a marked improvement in his condition John’s wife was shown how to care for the wound and he was once again allowed to go home. Throughout his treatment John feels that he was poorly informed and his step daughter had to press for information on his behalf before the medical staff explained the process and implications of his treatment.

John now gets out and about but has learned to plan toilet stops into his journeys. He admits he has become less affectionate towards his wife as he now feels somewhat sexually and emotionally impaired. He currently suffers mood swings and depressive feelings which he has not mentioned to either hospital staff or the staff at his GP surgery. He still attends the hospital for check-ups every six months but feels he has little or no back up’ or support from them.

John Z thinks more information would have been helpful.

Age at interview 68

Gender Male

Age at diagnosis 64

Waiting until the next appointment without any information or feedback after the operation left…

Age at interview 68

Gender Male

Age at diagnosis 64

John Z has had a total penectomy and finds it difficult to respond when his wife shows affection; they no longer sleep together.

Age at interview 68

Gender Male

Age at diagnosis 64

There’s sometimes no feeling in John Z’s swollen leg. This has made him feel unsteady, especially in crowds.

Age at interview 68

Gender Male

Age at diagnosis 64

John Z was left bewildered after a blunt diagnosis from two doctors with no further explanation.

Age at interview 68

Gender Male

Age at diagnosis 64

Initially, John Z daren’t look at the results of the operation. When he did look he was shocked and was afraid he would have to wear a catheter for the rest of his life.

Age at interview 68

Gender Male

Age at diagnosis 64

John Z visits hospital every six months. He feels okay until he gets to the hospital when he feels a bit apprehensive and anxious.

Age at interview 68

Gender Male

Age at diagnosis 64

John Z has a radar key so he has access to lockable public toilets. He needs to urinate often so plans journeys around toilet stops.

Age at interview 68

Gender Male

Age at diagnosis 64

John Z was anxious about seeing the scars from his penectomy but a nurse removed his dressings so he could have a shower, so he had to look at it.

Age at interview 68

Gender Male

Age at diagnosis 64

John Z occasionally gets depressed, but it is not common knowledge.

Age at interview 68

Gender Male

Age at diagnosis 64

John Z was passing blood in his urine but delayed reporting it until his next routine diabetic check up; he says he should have sought help sooner.

Age at interview 68

Gender Male

Age at diagnosis 64

When talking to the man in the next bed on his ward, John Z told him he had penile cancer.

Age at interview 68

Gender Male

Age at diagnosis 64

John Z had his operation under an epidural because he has a lung disease. Under epidural he could hear the staff talking and his legs felt like cement, but he felt no pain.

Age at interview 68

Gender Male

Age at diagnosis 64

In the hospital John Z was able to have a laugh and a joke with other patients; everyone was in the same boat.

Age at interview 68

Gender Male

Age at diagnosis 64

As well as his wife and step-daughter, John told other relations and his next door neighbour that…

Age at interview 68

Gender Male

Age at diagnosis 64