William's Story

Introduction

In the middle of a lovely, sunny, late summer walk along the beaches of Boston, my partner, twelve months into treatment for breast cancer, looked up at me and opined:

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“This has been the worst year of my life”. 

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My response was immediate:

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“I must wholeheartedly disagree, I feel that this has been the

best year of your life”.

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She looked at me like I had two heads and inquired about my

meaning. I elaborated with a thoughtful smile,

 

“You have just beaten breast cancer”. 

 

This conversation aptly summed up my role as a breast cancer caregiver.

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Characteristics of Caregiving

There are many characteristics of life as a caregiver. The support that one provides to a cancer patient/survivor includes many of the following: emotional, physical, intellectual, financial, social, spiritual, nutritional, and motivational aspects to name just a few. But you are never alone. There is help and assistance everywhere. I found the following links to be quite helpful in coming to terms with my role as a caregiver.  

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https://www.cancercare.org/tagged/caregiving

http://www.breastcancer.org/community/acknowledging/caregivers

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From diagnosis and onward the responsibilities associated with caregiving kick in. There are meetings and discussions with your oncological and surgical teams. Options and alternative courses of action are proffered and weighted. Decisions have to be made in short order so it’s best to prepare yourself ahead of time by performing as much due diligence as you can. Do your research on the various options as spelled out by your care team. Once a course of action is agreed upon and plotted, take particular care to stay on top of developments, i.e. scheduled appointments, pain/emotional management, medications, coordinating and communicating information to the extended caregiving family, and helping with chores.

At all times, be aware that you are there to assist the patient. This isn’t about you. Involve yourself with the patient’s emotional issues. You do not need to be a medical professional. Common sense and responding through the lens of caregiving should provide you with enough tools to deal with the myriad emotions that arise, such as fear and depression/sadness. There are many support groups that you can reach out to, including hospital care groups, psychiatrists, social/media pages, https://www.survivingbreastcancer.org/

#survivingbreastcancer

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The Social Perspective

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Together we went out on a limb and informed all of our friends, both in person and through social media of the diagnosis. We also discussed it with our local area restaurant staff and work out circles at the YMCA, to eliminate any fears of considerations/communications from friends and associates regarding her cancer. Remember, the patient will be going through both emotional and physical changes, but still will want to resume enjoyable activities like date nights or walking on the treadmill as much as possible.  We found that discussion opened many doors of kindness, friendship, and offers of help. 

 

Long Term

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Breast cancer remediation and treatment is a long-term commitment. Be cognizant of the fact that you too, as a care giver, need help and support, and quality time as well. Don’t try to do it all. Involve others, either extended family, or friends, or even medical support groups.

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Remain flexible. Due to the constant changing nature of recovery, from chemotherapy, to surgery, radiation, additional chemotherapy (if necessary) and follow up hormonal treatments, you may find yourself faced with multiple patient fronts. Side effects of the treatment are varied and include hair loss, water weight gain, physical breast alteration, depression, exhaustion, lymphedema, foot and mouth issues, to name several. Prepare yourself as best as you can to prevent the above from adversely affecting you in your role. It’s ok for the patient to be tired and sad. It’s also ok for the caregiver. I found comedy and music (movies, TV, radio) to be a great relief as it tends to change the narrative.

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Encourage Optimism, Avoid Negativity

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A final anecdote: during the middle of a particularly depressing spell, I suggested that we go for a bicycle ride to get her out of her environment.  As usual we went too far (40 miles total that day) and her depression was kicking in. So about thirty miles into our ride we stopped and took a break. After rehydrating and fueling we were able to get up and return the last 10 miles to our condo in Boston. Months later she asked how I was able to help her overcome her severe and scary depression on that particular ride. She told me her thoughts bordered on taking irrational actions. I told her that I remained focused on the positive and didn’t offer up any psychological rationale about dealing with her extreme sadness and potentially deleterious behavior. She then asked me “how did you know how to respond” and my answer was simply to reaffirm the healthful, positive aspects of our lives, which always returns us to our code during times of trouble - KGH (keep going hard).

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Closing - Managing Expectations

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In closing I’d like to suggest that a caregiver remain focused on the job at hand and manage expectations. Don’t try to do to much. Recognize what you can do, perform your due diligence so that you can assist in the discussion and decision making. Remain positive and inspirational and as helpful as positive. But remember it’s a long haul and you, and your patient, will need to count on each other throughout the ordeal.