(Above left: When his wife was diagnosed with breast cancer, author Marc Silver wished he had a manual to guide him on what to do. He proceeded to write one himself. - The Baltimore Sun photo by Gene Sweeney Jr. Right: President of the Malaysian Breast Cancer Welfare Association, Ranjit Kaur)
WHEN a loved one breaks bad news to you, any variation of the remark, “This is not good” (as if they don’t already know), might not the best thing to say.
Ranjit Kaur ... Most husbands respond to the diagnosis of breast cancer as one would do towards any other cancer. They have a similar emotional response of uncertainty, fear, and guilt.
But that was what author Marc Silver muttered to his wife when she told him over the phone that her doctor suspected she had breast cancer.
He describes his experience in the introduction of his book, Breast Cancer Husband: How to Help Your Wife (and Yourself) during Diagnosis, Treatment and Beyond: “Deeply distraught, Marsha called me as soon as she was out of the doctor’s office. She wanted to share her pain and to seek some husbandly solace. On a scale of one to 10, with 10 being truly superb and one being utterly inadequate, my reaction deserved, oh, maybe a minus 11...
“My wife still likes to remind me of my exact (and insipid) words: Ew, that doesn’t sound good”.
At that point, he wished he had a manual to guide him on everything – on what he is supposed to do at the doctor’s, how to protect Marsha when her doctor suggests something she is not comfortable with, how to support and comfort her, and how to deal with both their emotions.
Above all, he was terrified of doing or saying the wrong thing.
“If you goof up on Valentine’s Day or forget your wife’s birthday, you can always make amends next year. But when your wife is fighting a life-threatening disease, you want to be on top of your game. The problem is, you’ve never been on the playing field before,” he wrote.
However, as he has met many other guys who have had similar experiences, he added: “Of course, you are not alone in your ineptitude. Most guys are complete novices when it comes to this caregiving thing.”
My wife has breast cancer
Certainly, not all women with breast cancer are married or have significant others (I will call them husbands here), but many of them are.
However, there aren’t many books written about this subject (Silver’s is one of the few). What we do have, are many studies (that doesn’t always make it to the news pages) about how men react when their partners are diagnosed with breast cancer.
Some of the commonly documented feelings are that of shock and disbelief, helplessness, worry, fear, and guilt.
When his wife was diagnosed with breast cancer, author Marc Silver wished he had a manual to guide him on what to do. He proceeded to write one himself. - The Baltimore Sun photo by Gene Sweeney Jr.
“Most husbands respond to the diagnosis of breast cancer as one would towards any other cancer. They have a similar emotional response of uncertainty, fear, guilt, etc,” says president of the Breast Cancer Welfare Association, Ranjit Kaur.
“The man himself is fearful of losing his life partner and is grieving as much as his wife,” she explains via email.
To Marc Heyison, the president and one of the founders of Men Against Breast Cancer in the US, it is hard to quantify personal experiences as it varies between individuals and is dependent on the circumstances they are in.
“For me personally, and if not for all, then for almost all the men I have worked with and talked to, there is an overwhelming sense of fear, helplessness, and hopelessness that the woman you love is going to die,” he says when contacted via email.
“I know for me, when I heard ‘Your mum has breast cancer’, I felt like a little boy whose mummy was going to die,” he says. “I was 29 at the time.”
To help other men in the US deal with similar experiences, Heyison and Steve Peck founded Men Against Breast Cancer, a non-profit organisation in the US to provide support services to educate and empower men to be effective caregivers as well as active participants in the fight against breast cancer.
Studies seem to confirm what Ranjit and Heyison have shared. Having examined the experiences told them by 48 spouses of wives who are newly diagnosed with breast cancer, researchers at the University of Washington School of Nursing are able to organise, using respondents’ own words, the responses they collected into four groups in a paper published last January.
The first group – feeling nailed by the breast cancer – describes the spouses’ feelings of being emotionally overwhelmed by the diagnosis. “Men described feeling ‘powerless’ when it came to helping their wife. They experienced the breast cancer as an uncontrolled situation and as something they could not change,” wrote the researchers. “It bothered them to see her in pain and sick from treatment,” they continued.
The second batch – changing us – describes the spouses’ reports of changes in the relationship. Being no different than any adversity, the diagnosis either brought the couple closer or made the relationship more difficult. Some also expressed challenges in parenting their children about breast cancer.
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In the next group, taking care of me, the spouses’ experience in getting support varied greatly. “Although some men appreciated and sought help from others, others chose not to talk about what was happening.” Some reported receiving support, while others claimed friends abandoned them. Likewise, some took time for themselves while others did not.
Last, but certainly not the least, are the kind of responses that come under the description: making things work. Spouses in the study have devised and used various methods to get through breast cancer, which includes doing more housework, making the effort to understand and support their wives, and adopting attitudes they believe will help their wives in dealing with the cancer.
The paper quoted one of the responses. “You try something different until you find out what works. You know, it’s just a matter of making things work.”
As the men who participated are mostly Caucasians in long-term marriages and were interviewed within six months of their wives’ initial diagnosis, researchers are not sure if they belong to a unique population of men. However, the researchers’ study has provided some insights to what men really think when their wives or loved one is diagnosed.
How men can help their wives (and themselves)
Of course, cases of husbands who are not exactly sterling examples are also common. Like the guy in Silver’s book who asked his newly wed wife, “I thought you were healthy when I married you”. However, Silver suspects that sometimes they just do not know what to do.
Having lost his wife to breast cancer that had spread to the lungs almost a decade ago, former auditor Gursharan Singh recalls his conversations with some of the husbands he met after he volunteered for Cancerlink Foundation, an organisation that provides information about cancer and support for those living with cancer.
“Most of them want to know, ‘what can I do now’?” says Gursharan, who is now cancerlink’s honorary treasurer.
Unfortunately, the possibility that their husbands may be going through hell may not get through to women diagnosed with breast cancer often enough. “We have come across men who tell their wives, ‘I married you, not your breasts’,” says Ranjit.
There is no doubt that even with the abundance of information made available to the public these days, the news may still come as a shock. However, you can be somewhat prepared when you know your wife’s options (see Breast cancer stages and options).
After that, if you ask Heyison and Gursharan, it is mostly about being there for your loved one.
“There is no finite list, or even a top 10 list of things you should do,” says Heyison. “That’s not to say that there are not quantifiable and tangible things we can do, i.e. take care of the kids, take care of the house, cook, clean, go to doctor’s appointments, take notes, and be the gatekeeper with friends and family, to name a few.
“There are, however, several things we must do, and that all starts with being there for her, and for her to know that you love her and will be there with her every step of the way,” he explains.
“If she knows that and feels that love, then all things are possible, and as a couple, you work through the crisis of breast cancer and the myriad obstacles that you face – but you face them together,” he adds.
For Gursharan, being there for his wife had meant spending time with her. “I was lucky because I had understanding superiors and an extended family that is very supportive.”
However, being an action-oriented bunch, men sometimes have problems with the simple act of just being there for their loved ones. “Sometimes men will ask me – what can I do when I am there with her as I have nothing to do?” says Gursharan.
“I always tell them, you don’t have to do anything. Just be there for her. You can both go about doing what you normally do. You don’t even have to talk because silence is also a powerful way to communicate,” he says.
“Your presence gives her peace of mind,” he observed.
That said, there is no doubt that caregiving can be tiring at times, and men need to take care of themselves in ways appropriate and acceptable to their loved ones in treatment.
“Men may feel self-imposed guilt if they play a round of golf, go out with a buddy, or go to a sporting event,” says Heyison. However, if these are discussed in a loving manner and agreed upon with those back at home, men should do these for their own mental well-being as stress is unavoidable and a normal part of life.
Is it unfair to expect all these from men? After all, some have walked away from a loved one because they are only human and have career goals and other needs, I asked Gursharan.
His rhetorical answer says it all. “What if I turn it around and asked how would they feel if their wives did the same when they are sick? Would they be able to accept it?”
For Heyison, it is just a simple matter of repaying the good that his mother had shown him. “We must never lose sight that women we love, and in my case, my mum, did not raise her hand to get breast cancer ... My mum was always there for us and it was our time to be there for her,” he says.
Perhaps, it all boils down to whether men are willing to dedicate time and effort to care for their loved ones. As the old saying goes, when there is a will, there is usually a way of working things out.
> For more information about breast cancer, visit Cancerlink Foundation and the Malaysian National Cancer Society’s website www.cancerlinkfoundation.org and www.cancer.org.my. If you are interested to know more about caregiving for men, visit the Men Against Breast Cancer website, www.menagainstbreastcancer.org.
