This post has been revised slightly.
Foreword: I wrote this article to help spouses supporting a spouse going through cancer treatments from diagnosis to treatment to remission. When my wife was first diagnosed with breast cancer, and throughout the process I realized there is not a lot of support for the “supporting spouse.” Hence, I created this short article to help others in the same situation. Not that we need medical attention but our worlds can quickly become chaotic if we let them. When a spouse or immediate family member is diagnosed with cancer, we need to find the resolve within ourselves to provide the best support we can or find ways to ask for help. There is always a way to manage through it and find the best way to be a spouse, father or mother. Ultimately we need to support, love, and cherish the cancer patient, sustain and guide our family, and take care of ourselves at the same time. This article doesn’t go into the details of my wife’s personal journey (emotional and physical) through surgery, chemo, and radiation therapy. That is her story to share. But I will say she has been my hero and continues to be my hero. I love her more now than I ever have.
In early January, after a long cross-Atlantic flight, I walked into a meeting with about 70 of the top global executives from my division and one of my colleagues yelled across the room “Hey Gene, how’s your wife?” He was the only person I had shared the news with about my wife discovering a lump in her breast and had just had a biopsy. I was in New York for meetings to plan the sales strategy for 2016. Now the top executives all knew something was up with my wife and the ones who knew me well approached me at quiet times during the strategy sessions. I wasn’t ready to share any news as we had no news, just a concern that needed investigation. I appreciated my colleagues’ inquiries and genuine care, but I wasn’t sure how or when I would want to communicate anything should there be an issue.
We had to wait a week for the results of the biopsy. Perhaps women have a heightened sense of their bodies over us men. My wife had a genuine concern, and it proved warranted.
I still remember that ominous and cold January morning in Paris. We calmly walked our girls to school and held hands as we crossed the Jardin Du Luxembourg (our favourite park in Paris), exited the park gates and followed the narrow streets to the doctor’s office. We sat in the waiting room for what I thought would be a long wait. I had barely settled into the comfort of the waiting room sofa when the doctor opened the door to greet us. Her expression was tender, sensitive, and immediately communicated what we had feared. The doctor confirmed my wife’s suspicions that she had a malignant tumour in her right breast. We were impressed with how quickly the doctor went into action and set up the next series of appointments and tests with the “Institut Curie”, a leading cancer treatment hospital in Paris. We left her office knowing we were in good hands but had a thousand more questions.
Instead of returning home we went to a café to sit, think, feel and discuss our emotions and everything else that came to mind. We sat and drank espressos while we focused on being together and letting our emotions surface and linger. I recall being quiet though wanting this time for my wife’s feeling to be the priority.
Eventually, we had to define a strategy to manage all that was to come. We discussed who we would alert; how we would manage the treatment schedule, medical costs, and other associated expenses; should we stay in France or move back to Canada; how would this impact my career; would we tell the kids, and; how would we manage the kids’ school and extracurricular activities. Most importantly we decided to make the treatments and battling cancer the priority above work, career, and anything else. We also wanted our kids’ schedules to continue without interruption. We didn’t want their regular lives to change, however, looking back now, we knew this was naive. Watching a parent go through cancer treatments is a major impact on young children even with consistent schooling, vacations, and other fun activities with friends and extended family.
We also decided to stay quiet on social media. We only alerted those closest to us. We didn’t want to sensationalize the situation and create more anxiety in dealing with the hundreds of people who would be calling us, sending us care packages, or asking for updates. We discovered there was a lot of work merely responding to the many messages and phone calls from our closest friends and family. To this date, I’ve yet to put anything in my personal Facebook stream or on Twitter. I’ve only shared a few comments in private Facebook support groups in the context of helping someone else going through a similar situation.
I also had to make a tough personal decision for my career. Just weeks before learning about my wife’s cancer I was in discussions with my employer to step up a level and manage a global team. We had suspicions about the lump and compiled with other lifestyle and family implications I would be less than an optimal husband and father or would fail miserably in the new role due to the attention I would need to give to my family. It would have been a terrible situation, so I put any career decisions on hold. I haven’t spent any time lingering or dwelling on the decision. I had to let go of my ego for the good of my family. In two years or twenty years from now, I’ll look back at 2016 and the job and career will be a but a faint memory while the time supporting and bonding with my wife and children will be vivid, durable and without regret. It is also important to note my employer has been amazingly supportive and their tenderness through this process has only strengthened my loyalty to them.
My wife has been so incredibly supportive to me and my career. She followed me overseas twice and put her career on hold to be a stay at home mother and wife. She needed me more than ever.
As the surgery and treatments began our daily lives became more and more complicated. We had to manage school logistics, my demanding work schedule, and medical appointments, and several hospital visits for additional tests. Equally important was the personal education we needed for what we were battling and for the journey we were about to begin. Every new doctor and every new appointment introduced vast amounts of information that left us overwhelmed. I searched for a book with no success that laid out precisely what each step entails from surgery to chemotherapy, to radiation therapy, to symptom management, and recovery. Going for surgery isn’t as simple as showing up one morning for the procedure. Blood tests, x-rays, and anesthetist appointments were required before the surgery.
Chemotherapy required a surgical procedure to install a subcutaneous catheter in my wife’s chest and a detailed project plan to manage the treatment schedule, the prescription drugs, and all the side effects. The very first day of chemotherapy required an hour long meeting with a doctor to go over the entire series of treatments, and we were given over twenty different prescriptions to pick up for various side effects or to take in different stages of the six chemotherapy sessions. We madly wrote down all the instructions hoping we didn’t miss anything. Luckily we would meet with a doctor before every chemo session and use that opportunity to clarify and confirm the prescription protocol.
After her fourth chemo session the side effect management drugs changed and for the first week, my wife was struggling physically to withstand not only the chemo but also the side effects of the medications that were meant to manage the side effects. She was so weak one morning and hadn’t had the strength to eat but wanted to walk to the kitchen. She didn’t have any energy and kept fainting. I’m so grateful I was there to help. Had I not been there I fear she would have tried walking on her own and fallen and hit her head. I had to help her sit, and once she ate and her blood sugars came back to normal she was ok. But it put a lot of fear into us, and we were concerned her condition or response to the chemo would progressively deteriorate.
After that morning in May where I saw my wife completely undermined by the chemotherapy, I made a decision to take extended time off work to support her and the girls. I was already exhausted juggling the kids, my wife, work and my ambitions to keep fit and continue running 30-50km per week. Luckily my employer was very supportive, and I combined stress and family leave with the vacation to get ten weeks off work. I wasn’t off full time as I still took several calls, responded to as many emails as I could, and attended several conference calls each week. But I made it clear this was my time to focus on my wife and help her through her final chemotherapy sessions and be with her until she regains energy before I returned full time. My colleagues and employer were very supportive and gave me the space I needed.
There is a permanent emotional dimension that permeates the entire journey and never goes away. Supporting a spouse through cancer treatments is exhausting but not as exhausting as what she has to go through. There are times when it feels like cancer has moved in, set up a bed in the middle of the living room, and watches the worst TV shows 24 hours a day at top volume while screaming for beer and chips every twenty minutes. It’s like a having a bad relative that won’t move out no matter how blunt you are with them. Over time, you grow weary, worn out, you relent and accept it, but the energy it sucks out of you is excruciating.
One day my wife and I got into an intense argument. We were both at the end of our respective ropes and needed someone else to step in and help or a release valve to let go of all the tension. She was angry with her cancer diagnosis, felt guilty for not being able to support the kids or me, was depleted with the treatments, and was living in fear of not knowing if she would come out of the treatments in good health.
I felt unsupported with all the demands of supporting her, doing all the kid logistics, cleaning, shopping, meals, emotional support, managing work, and watching her deteriorate from chemo. What I meant to communicate with my comment was that I wish I had more family or friends to help us. There were days where I couldn’t find any more energy, where I felt completed cooked with nothing else to give. Day after day, night after night I would find the strength to be the rock and support as best I could.
A good friend advised me to “put on your oxygen mask before you help others” when my wife was first diagnosed with cancer. In other words, get your own support, take care of yourself and ensure you get support so that you can support others. Being fiercely independent and stubborn I take a lot on. Looking back, I should have asked for help from others sooner. Eventually, we found more support, had people come to visit us to help, or we hired people to spread the workload.
My wife hasn’t finished her treatments. She just started radiation therapy and has another four weeks to go before she starts the hormone therapy pills for ten years. It’s been a long journey that is not over yet, but at least the toughest part of the treatment is behind us. Radiation therapy is tiring due to the intense daily schedule but is not as taxing on the body as chemotherapy.
She is slowly recovering her energy and returning to her usual self. Her hair is growing back, and she feels more comfortable walking alone in the neighborhood and going out to see friends.
We are entering a new phase where we hope all the treatments did the work. But the results and the testing are ambiguous. The doctors simply advise to stay the course on the hormone therapy and visit them once a year for tests and a mammogram. But it feels like a full scan to ensure the chemo and radiation therapy got everything is missing. Once you have cancer, you never know if it will come back. This fear stays with you… always.
Since the initial diagnosis I’ve become closer to my wife, stopped arguing about the petty stuff, have forged an incredible bond with my daughters, and learned a lot about setting expectations with everyone else in my life and more importantly with myself. I’ve learned to let go of small things and focus on the top priorities at home and work. How sharing and being open with work, friends, and family helps create a community of support. Also, how one must still make time for exercise, good eating, and fun. It is critical to take time for me to ensure I recharge to have the energy to be a supportive father and husband. It’s very easy to burn out trying to do it all.
It was tough taking time off work as I felt guilty leaving my duties behind, but when I look back in a year, or ten years, I would kick myself for not taking time off. My decision to take time off to be with my wife raised her spirits and created a positive change in her outlook since I was able to give her a lot more attention than I was when I was working and trying to juggle everything.
Sickness forces one to look deeply at themselves. Am I living the life I want? Life is beautiful and fragile. And family is the foundation for building a solid career and community if it is cracked it needs to be mended it before you can continue building on it. Despite what we’ve gone through and the uncertainty of the future, I’m happier now than I was in January. I’m proud to be a devoted supporter and have seen a huge change in my relationship with my wife and girls.
In summary here are a few key factors to consider when supporting your spouse going through cancer treatments.
Bond with your Spouse
Now is the time to love your wife like you’ve never loved her before. While managing the home front logistics and kids help, listening to what she asks for and needs is crucial. You are her partner in this journey, and she will need you. You have to find a way to be there for her physically and emotionally.
Community and Communications
You don’t need to let everyone know about the cancer diagnosis. Only those who can help or that are close to the family. We chose to be more private about the cancer in the acutest period because we simply didn’t want the overhead of managing all the communications and extra phone calls and emails that would come with it.
But for those who were in the inner circle, it was vital to let them help, embrace them and open your house to them.
Career, Self-Preservation, and Care-taking
“Put your oxygen mask on first before assisting others.” This is excellent advice. You have to take care of yourself before you can take care of others. Yes, this is a delicate balance. But you need to find time to exercise, sleep, have fun, rest and rejuvenate so that you can be fully present for your spouse and kids.
Make Children Part of the Plan – They Want to be!
I could write a whole book on my experience supporting and parenting the kids this past year, especially in times where my wife was completely unable to participate as a parent. I did a lot of right things, but I also made a lot of mistakes. Some of the mistakes we are only learning now and I’m sure others will surface in the future. But we felt it was important to keep our kids’ lives as untouched as possible. In other words, vacations, school events, friends, birthdays, extracurricular activities, time with friends was not going to change. We wanted their lives to go forward. However, there were times when we found ourselves as parents completely drained and are kids entertained themselves with iPads or TV instead of us reading books to them or spending time playing games or doing crafts together. As parents, we put a lot of pressure on ourselves to ensure our kids have a “great” life, but it is ok to be human and realize you can’t do everything. Kids know more than we give them credit for. They want to help, be tender, cuddle, help out. We could have done a better job letting them play that role.
Diet and Exercise for Everyone
Our diet has always been pretty healthy as we rarely ate a lot of sugar or processed foods. However, we took a harder look at our meals and made sure we were eating a lot more real food which required us to cook more and make more from scratch. A healthy diet provides emotional benefits, physical nutrition, and overall vibrancy. We remain steadfast in our healthy food choices. Also, we are fortunate not to have a car. We get our exercise by walking every day. Each one of us now walks about 10,000 steps a day.
Understand and Project Manage the Treatment Protocol
Every cancer and cancer patient is different and requires a unique treatment protocol that may change or evolve over the weeks and months as the doctors learn more about the stage of cancer, type of cancer, etc. As such, the treatment approach evolves and remains unique to that patient. At the most abstract level cancer is usually treated first with surgery, then chemotherapy, followed by radiation therapy and then potentially prescription therapy. However, not every patient will require each of these and if the patient does need them they each have their own unique chemotherapy drugs and protocol along with the side effect management medication.
Your job as the spouse to partner with your wife to help her digest and manage the treatment protocol. One can liken it to a project management plan with a beginning, milestones, and achievements required to proceed to the next phase. Some stages can be overwhelming with the intricacies of the prescription medication needed to support the treatment, while others are only challenging from a logistics management point of view.
Financial and Expense Management and Planning
A few years ago our financial advisor recommended we buy “serious illness insurance.” Meaning, if one of us got cancer, the insurance company would immediately pay out $50K for a confirmed diagnosis. The monthly premiums can vary from $30 to $100. We chose not to buy this insurance, and I’m not sure if I regret it or not. We’ve probably paid an extra $20,000 this year in additional expenses related to taxis, babysitting, caretakers, other therapies, hosting family, paying for planes tickets for the family to come and help since we are so far away from family in Canada.
Luckily we have extra savings that we could dig into, but I often thought of people who live paycheque to paycheque, and I wonder how they would manage.
The point is that you need to make a plan. Assume you will have additional expenses and ask for help. If you have a close family relative who can take care of the kids, make meals, drive you to the multiple hospital visits, etc. that could help a lot on the expense front.
Post treatment – Rebuilding to Strength – spouse, yourself, and the family
Life goes on, and you have to assume and plan like you will all get through this together. We are now through most of the treatments, and we have our first family long weekend planned where we can put a lot of this year’s journey behind us. We are so looking forward to that weekend away visiting family in Amsterdam. We need a few days to enjoy each other outside of our familiar everyday environment.
It takes a long time for everyone to rebuild. My wife is slowly regaining her strength. I’m emotionally and physically exhausted but know that I’ll rebuild and recapture my normal energy in time. You have to respect and listen to your body and your emotions and let them dictate what you will do or not do. For instance, I cut back on my running ambitions and only run a few short runs two to three times a week. Slowly I will build back up to long distance running again.
Reflections and Gratitude – throughout the journey
As per the story of this journey, we’ve learned it is important to pause and reflect on our lives. There is so much to appreciate and to give thanks for. I cherish every I share with my wife and kids.
If any of you find yourself in a similar situation, I would be more than happy to speak with you and share some of my learnings or simply be an ear to help and support you.
This post was originally published on GetConnectDad.com and is republished here with the permission of the author.
Photo credit: Getty Images