Caring Men as Caregivers

StandByHer

Many of us turn to someone who has been through the experience of cancer when we begin to walk through that valley of shadow ourselves. No one can relate to the experience unless they have stared it down in their own lives.

If men are looking for someone who knows the experience of caring for someone with breast cancer, it has to be the author of STAND BY HER: A Breast Cancer Guide for Men. John W. Anderson lost his mother to breast cancer in 1988, ten years after her diagnosis. He also watched his sister, his mother’s best friend and his wife survive their own battle with the disease. Few men can speak to the issues surrounding the breast cancer journey from so many angles: as a son, as a brother, as a husband and as a friend. From these experiences, Anderson has created a guide to help men support their loved ones through the multitude of issues that accompany a cancer diagnosis.

It was my pleasure to exchange emails with Anderson and to hear his insights, especially related from the perspective of the spouse and primary parent. To no surprise, Anderson commented that any woman’s first fear after hearing of her diagnosis is of her children and of the fear of missing their future. As their wives move from diagnosis to treatment, “Whatever the child-caring situation is between husband and wife before cancer, more pressure is on the guy to fill in the gaps. With that said, as he picks up more of the load, the husband may feel at times overwhelmed, underappreciated, and frustrated that he is carrying more of the child load”. Combine that with the emotional toll exacted on the cancer patient herself and things are going to get interesting. It is common for cancer patients to feel a bit powerless and so they may try to regain a bit of control, even if it is accomplished by criticizing the very people who are trying to help. But Anderson stresses to men, “Don’t fight back. In fact, embrace it, because it shows how she is fighting to get her life in order”.

What about the children? I asked. “Kids need to know that everything is going to be fine; and if  not, they need to know the bad news at a level appropriate to their age. But the most important thing that you can give them during this difficult time is routine”. Every expert that I have read or spoken with has made it clear that the main priority for children is to reassure them that they are loved and that their needs will be met. Anderson certainly agreed, “Keeping things normal around the house sends the message that, no matter what else is happening, or will happen, they are going to be cared for, everything is going to be fine, and life is going on just as it always has”.

Our email exchange ended with a great story about how his son, then five year old, dealt with his mother’s cancer. “He was pretty darn proud of it,” said Anderson as he related the time that his son removed his mother’s scarf in order to end the debate that he was having with a friend over whose parent was sicker; the Daddy with sniffles or his own mother. Turns out a bald mother trumps just about anything.

John W. Anderson’s guide, STAND BY HER: A Breast Cancer Guide for Men, is now available. If you are supporting a woman that you love through her breast cancer experience, please visit the website, www.standbyher.org. In addition to other helpful information, the site features a blog and forum where men can connect with other men in similar circumstances.

To connect to the Amazon page for the book, please click here.


When Kids Come to the appointment

We went to the oncology office this week for the regular follow-up appointment and subsequent deep exhalation of stale and pent up breath that we have been holding for too long. Good news awaited in the form of a clean scan and future appointment are scheduled in hopes of explaining some concerning symptoms.

It did amuse me, though, when the provider greeted our son and remarked how we always brought “great things to entertain him”. It makes me wonder what other famlies with small children in tow do to keep their own little people happy. We have no nearby family so our son is frequently along for the ride. I also hold the opinion that  it makes the situation less mysterious and hopefully less frightening to children to come along and see what it is all about. It is easier to talk about the doctors that are helping Daddy to feel better if he gets to come along and meet them and see their friendly faces.

So, with that in mind, here’s a peek into our little box of tricks…

Our little guy is four now but he was two when we startd our regular trips to this office. Preschoolers might enjoy watching the actual exam of Mommy or Daddy but there is often a lot of waiting before that part happens and ever that has a limited time offer. We have always taken some new amusement along with us to keep him busy and happy for a visit that is always longer than expected. Sticker books have been his addiction off and off for much of the last two years. After all, cancer magazines might be fascinating to me but they don’t hold much attraction for him. There have been coloring books and backpacks with snacks on a visit or two. Even a few select Matchbox cars have made the trip although that one can be risky depending on the day. In a pinch, there is always the back of a random envelope and a pen for tic-tac-toe or scribbles. We have also been known to  bring the portable DVD player with a set of headphones. We don’t allow much screen time for him so a movie is a particular treat that he does not often have. (I seem to remember Frosty the  Snowman playing in it during a holiday time appointment.) This time we had his Leap Frog Tag reading system with one earphone in his ear and the other in mine. And the office always has a jigsaw puzzle in some degree of completion and at recent appointments, he has delighted in contributing to that project while we burn some time the waiting room.

My survival tips for my husband’s medical appointments are simple. If our son is sick, he does not enter the waiting room. When he could not go, that meant I could not go. I suggest you have a back up plan or a friend that you can call in a pinch. Bring plenty of guaranteed diversions. If you can sneak something new into the bag, it just might help to save the day. Headphones are excellent for not only containing the noise we might create but also for helping us to shield him from excessive information at a young age. There are not often young children in waiting rooms so I have found that most patients and staff are happy to see a child in the office as long as the noise and chaos are under control.

Follow the clinic’s rules and wishes regarding children and where they are allowed to enter. Remember that chemo targets rapidly growing cells and what are children? Fast moving bundles of rapidly growing cells! Infusion areas are usually off limits for young children. Treatment days might be a good time to arrange a play date so that everyone has an easier day.

There is a bit of guilt that was packed into that backpack too. When I had to choose which of my boys to be with on any given day, I always grieved having to make that choice. Sending my husamd to infusion alone was sometimes a necessary evil. Sending my son off with someone else or constraining his enthusiam in the appointment never made me feel like Mother of Year either. 

Let me hear form you. What survival tips did you employ to keep kids under control in the medical office setting?

Cancer sleep in our Guest Room

I naively thought that once my husband got the “all clear” from his oncologist that we would be wiping our hands clean of the whole ugly mess. Silly girl. No, now I believe that cancer just might be sleeping in our guest room. Don’t get me wrong, the door is firmly closed and we tiptoe past there lest we waken the sleeping giant.

But really, when your husband is on an every three month scan schedule, it’s really hard to escape the stupid creature. His scan is tomorrow and we have been anticipating it for a while now. He has some worrisome symptoms that may or may not be suggestive of cancer’s return, aging, hypochrondria, something else or nothing entirely. It’s all part of that whole Aftershocks thing that I have written about.

Every now and then, I catch a glimpse of a shadow coming down the hall and if I turn fast enough and cast my “mad mommy eye” towards it, it retreats like the petulant boogeyman that it is. And just like defending against the figment of a child’s nightmare, I have to search under the bed, leave a small nightlight on and hope that what I fear most is simply not true.

But we are at the mercy of a machine that will read the tea leaves of our collective fate and on the schedule of the messenger who will deliver the news. In the meantime, I will hope that the tears stay behind my eyes and that the next week goes quickly so that we can exhale and do whatever comes next.