Breast cancer: how do men cope?
Women with the disease are routinely offered psychological support. But who looks out for their partners? By Sara Edghill
Tuesday 03 September 1996
"I sat there and realised that, at the age of 40, my whole life could be about to change," he says. "Sheila might not make it through surgery, or the doctors might open her up and discover the cancer was far worse than they thought. I felt alone and completely terrified."
Sheila Angel had suffered worrying symptoms for 18 months before finally receiving a diagnosis, and surgery to remove the cancerous tissue was scheduled for just five days later. While his wife received good medical care and support from the hospital staff, Michael feels he was left to muddle through as best he could.
"No one really told me what to expect after the operation - how Sheila would feel about her body or how the two of us would get by," he says. "Our children were 14, 17 and 20, and we didn't know how to break the news that their mother was seriously ill. I didn't feel resentful that I wasn't being given any support, but I felt so lonely, and there were endless questions I wanted to ask in the weeks and months that followed.
"I tried to lift Sheila's spirits on the down days, and build her confidence back up, but for a long time she still thought she was going to die. I just wanted to ask someone who'd been through it: is this normal? Should I be this frightened?"
Some 32,000 women in Britain are diagnosed with breast cancer every year. Virtually all of them will undergo the trauma of surgery -whether lumpectomy or mastectomy - together with drug treatment and radiotherapy. Many will have to come to terms with the loss of a breast and may live in fear of the disease recurring.
The development of nurse counselling services means that psychological support for women with the disease has improved rapidly in recent years - but with the focus on the woman, the needs of husbands and partners tend to get forgotten. Like Michael Angel, the male partners of women with breast cancer are expected to cope, however terrified they may feel. Now a group of men who have been through this experience - including Michael - are running a support group to help others in the same situation.
The Partner Volunteer service was initiated about 18 months ago by the charity Breast Cancer Care, which already had a network of local volunteer groups offering information and support to women diagnosed with breast cancer. It was those volunteers - women with personal experience of the disease - who suggested that their husbands might also need a shoulder to cry on.
"Not only do partners have to cope with the fact that their wife faces surgery, may lose a breast and might even die," says Jan Murray, then volunteer services manager with the charity. "They also have to come to terms with their own feelings. They are bound to be upset, angry, helpless and frightened. But despite that, they are meant to put a brave face on things and give support, reassurance and love to their wife."
Partners face all sorts of practical, emotional and sexual problems. Practically, they are often expected to keep things running smoothly at home and care for children on their own, burden enough for anyone not used to such responsibility.
Emotionally, many women are so drained by their experiences before, during and after cancer treatment that they do not have the energy to worry about their partner's feelings, and rely on him to provide love, support and stability. Giving this kind of support can take its toll on a partner. As well as trying to constantly reassure and build up his wife's confidence, he may have to deal with a woman whose personality changes with the illness, and who takes out her frustration, anger and fear on the person closest to her. This leads to feelings of rejection and worthlessness when nothing he says or does seems to help.
Sexual anxieties are among the most prominent: a man may not be sure what to expect after his wife has undergone an operation for breast cancer. He won't know exactly what she will look like, or how he will cope with seeing her scar exposed. There is often the fear that husband and wife will never achieve the same intimacy again.
"Most men are amazed at the strength of their feelings," says Jan Murray, "All cancer is traumatic, but there is something rather different about breast cancer. A woman's body is a such a fundamental part of a couple's life together, that if she loses a part of it or is scarred after surgery, it affects the whole relationship."
So far, the Partner Volunteer group has helped dozens of men. An initial group of 17 partners responded to letters from Breast Cancer Care and came together for a training weekend in London. They were of all ages, came from different backgrounds and lived across the country. "But when we got together and shared our experiences, we felt an amazing affinity," says Michael Angel.
It is relatively early days, but Jan Murray admits the volunteers haven't had as many calls as they might have expected. They are up against what one volunteer describes as a "male thing". Men often find it hard to admit that they aren't coping well with a situation. Pride stops them from asking for help or advice, or even admitting that they are upset. From an early age they have been brought up to believe that men don't lean on other people when they've got problems - and they certainly don't cry.
The medical profession has responded positively to Breast Cancer Care's initiative. "Years ago consultants in the field weren't aware of the need for support for women patients, let alone their partners," says Jan Murray. "But most consultants now realise that the problems don't end when you send someone home from hospital after treatment - they are often only just beginning."
Mr Chris Ward, chair of the charity's medical advisory panel and a consultant plastic surgeon at Charing Cross Hospital, London, calls the new service an "essential initiative": "There is now a much greater emphasis on holistic care which takes account of family dynamics and personal issues. We hope this kind of service spreads to the partners of patients in other situations."
With next month being dedicated to Breast Cancer Awareness, Jan Murray predicts there will be "a lot of raised anxiety" among men on the subject. "We want to let them know in advance there is help at hand - and someone to talk to."
Breast Cancer Care's freephone number is 0500-245345.
'THE SEXUAL SIDE HAS BEEN DIFFICULT FOR US ... I DO EVERYTHING I CAN TO REASSURE HER THAT SHE'S STILL THE WOMAN I MARRIED AND LOVE VERY MUCH'
Ron Powell is 55 and lives near Spalding in Lincolnshire. Four years ago his wife Beverley, now 50, was diagnosed as having breast cancer after a routine mammogram at a local clinic. Within a week she had undergone a mastectomy.
"When the consultant first told us about the cancer, he said it was a very severe case; the worst scenario was that if they couldn't remove all the cancerous tissue Beverley would only have 15 months to live. We were both numb at first, then couldn't stop crying. We were also angry - why was this happening to us?
"Even after the operation, when the consultant said he thought he'd managed to remove all the cancer, we still thought, what if he's wrong? Even the experts sometimes make mistakes. Beverley was in hospital for several days and during that time I found it difficult to keep going. Being up at the hospital every day wasn't too bad, but I hated coming home alone in the evenings and having time to brood. I felt powerless: there was Beverley lying in a hospital bed, frightened that she was going to die, and I could do nothing to help.
"At various times over the next few months I started to feel rejected and pushed away. Right up to the day she was diagnosed, Beverley had been happy, bubbly and loved life. But once she knew she had breast cancer she suddenly started to believe she was ill; the weight fell off her and she just fell apart. After the operation she went through periods of real depression - we both did. The whole thing had been so sudden that we hadn't had time to talk about it, or prepare ourselves.
"It was months before we started to talk about what had happened. We should have tried to communicate and been affectionate towards each other, but at the time I couldn't even give Beverley a hug. She felt like she'd lost her femininity, and didn't want to show me her scar. Although I wasn't worried about that side of it and kept reassuring her that I still loved her, I did feel very confused about the change in her. It made a hell of a difference to our relationship - to the point where we slept in separate bedrooms for nearly a year after the operation. Even now we go through periods where it's hard to touch each other.
"About four months after the operation a deep depression hit me. When Beverley had been diagnosed my initial reaction had been, how am I going to cope with this? What am I going to do? Later I started to feel guilty and selfish that those thoughts were all about me. I was so low that I couldn't even speak to anyone without crying. It was a reaction to what we'd been through, mixed with guilt that I wasn't the one who had had the disease. But as a partner you do go through hell.
The sexual side has been very difficult for us. For some reason, when a woman loses one or both breasts she often doesn't want to have sex and it becomes a duty. I kiss her scar and do everything I can to reassure her that she is still the woman I married and the woman I love very much. If it means that our sexual habits are in decline, then I can live with that. But I can't live without her."
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