Tonight is the night before our 13th wedding anniversary. 15 years together as the ‘home team’. Just days ago was Jeff’s birthday, another first I’ve experienced since he’s been gone. I am no longer a wife and partner. No longer am I a cancer caregiver.
As I reflect on our marriage and the cancer experience…I think about the roles we play in our relationships and lives. For me, I have been/am: a daughter, friend, companion, sister, (dog) mom, wife, widow, lover, partner, career woman, advocate. 10 years ago, when Jeff was originally diagnosed, I added spouse caregiver to the list of roles.
Each role we take on carries a large range of possibilities and behaviors. We desire what these roles deliver to us – mutual support, protection, respect, sex, intimacy, caring, security, strength, and control.
We are much greater than that of our roles – yet some roles engulf us. We need to be more than one role in our lives. For spouse caregivers, this means remembering we are so much more than the care and support we are providing. And that can be particularly challenging when cancer is front and center in our homes and in our daily lives.
In my opinion, spouse caregiving is the most complex and intense role I’ve ever played. Frankly, the first time around, I was a mess.
Jeff and I were married for 1.5 years when he was diagnosed with stage 3 head and neck cancer. I was 35 years old. He was 45. Diagnosed on his actual birthday. We were newlyweds. We were focused on creating dreams, moving up our respective career ladders and traveling together.
That Friday, we were planning on leaving for France on vacation. We should have been having a birthday dinner and ‘us’ time that night. Instead, we sat in a hospital room looking at each other in disbelief. We got the cancer news, we canceled the trip and we dove head first into treatment talk.
That’s when everything changed.
That next week and hours of discussions with the surgeon, medical oncologist, radiation oncologist, nutritionist and the social worker, we learned that Jeff had 5 years at best.
I remember standing in our bedroom and I couldn’t breathe. My body was locked in a state of shock and I was furious. I remember thinking… “oh my god, I just married this man. We have dreams of growing old together. He can’t die. This can’t be. 5 years?!” I called my parents, cried the news and then jumped into the shower to cry some more. I sobbed as the water hit my face. The whole thing felt devastating. I felt lost.
I went into ‘caregiver’ mode to make sense of the chaos and to show Jeff that I loved him and that I would support him 100%. I read everything I could on his specific cancer. I searched out resources that explained the treatment and the side effects. I bought cookbooks with special recipes for the head and neck cancer survivor. I went to all the doctor appointments and asked questions. I scoured online forums to find the right creams to buy to help with radiation burns. After surgery, I emptied drains, I cleaned wounds, I bought special shirts that didn’t feel scratchy. Every night, I gently peeled off burned skin on his neck in order to apply such cream. I made his favorite soups and fixed every meal special.
I was diligent about paying attention to the signs and signals and sought out any notion of hope. Signs that he would be OK. Before and after work, I tried to do everything I could think of to help. The more I tried, the more I felt unsatisfied and unhappy. I lost me.
What I didn’t realize at the time was that I had allowed myself to become imprisoned by the role of the spouse caregiver at the sacrifice of my other important roles such as wife, career woman, friend and lover.
Yes, I was offering significant support and taking on tasks and responsibilities with the goal of eliminating stress so that he could focus on getting through treatment and recovery. My focus was on helping Jeff get through treatment. I was fulfilling the caregiver stereotype.
The flip side is that I did a poor job of retaining my sense of self, addressing my own needs and quality of life. Our relationship suffered and as he transitioned from treatment to survivorship, our marriage was impacted. How Jeff and I responded individually and together to this cancer diagnosis set us on a tough path. It took its toll on our relationship for the next two years.
Things got better once we acknowledged that cancer was the enemy, not us. We made therapy and communication a priority in our relationship and we intentionally chose us. It was not easy, yet it was worth it to us.
Round Two and Three:
Fast forward to a few years ago when Jeff was diagnosed with prostate cancer, we were put to the test, again. These two rounds were far more difficult, more serious and intensive. He received an initial diagnosis followed by a re-staging to metastatic disease within a few months.
Similar to the head/neck cancer diagnosis, we jumped into our research, studied the clinical trials and the survivability stats. We had detailed conversations, we got second and third opinions, we dove into treatment options fueled by many questions and a healthy level of skepticism. With one exception.
This time, our focus was on well-being and quality of life – for us both.
Even before we knew the cancer was re-staged as metastatic disease (incurable), we made well-being and quality of life a priority. We approached the cancer experience as a united team. Communication and active listening were must-haves and our conversations, while sad and difficult, left us better positioned to plan what was ahead of us.
3 Tips That Kept Us from Going Cancer Crazy.
#1: We talked about our roles.
Instead of slipping into the stereotypical patient/caregiver roles, we talked about how we could work together as husband and wife through the experience. Neither of us wanted a sequel to Round 1. These conversations laid the groundwork for us.
What we learned is that when things started to get challenging or we felt disconnected, it usually meant we were veering away from what we had agreed upon. And the commitment we made was to help each other get back to center.
Sometimes that meant limiting cancer talk to 10 minutes a day. Other times, we planned a fun, non-cancer activity with each other or created alone time to lose ourselves in a hobby.
Here’s how this played out…
One of my strengths is being responsible which means I don’t have a problem taking something on and seeing it through to the end. It’s a strength that has gotten me through many of life’s challenges. It also means I need to keep it in check so not to control a situation that doesn’t require controlling.
When either of us felt me taking on a deeper level of responsibility for Jeff’s treatment, I would ask him to help me dial it back. So that might mean, he took the lead to make a doctor appointment or create a revised medication list instead of my feeling pressure to take care of it. I asked for his help on this a few times. And if he wasn’t capable of helping at that moment, we explored options that worked for us both.
This ongoing discussion around roles allowed us to focus on the other roles important to us and our marriage. For me, it kept me from getting ‘sucked into’ caregiving 100% of the time. For him, he could look beyond being a cancer patient and remember he was a husband, career man, partner, lover, friend, etc.
When everything seems to revolve around cancer – exploring roles outside of the spouse caregiver/care recipient relationship is refreshing. And bonus, it’s good for a partnership and keeping our own individuality intact.
#2: We talked about our needs.
We spent a lot of time talking about what was important to each of us.
- What specifically did it mean to focus on the quality of life?
- What were the trade-offs we were willing to make?
- When the disease progressed, how did we anticipate those needs changing?
- What did well-being mean to us? and How could we help each other satisfy our individual needs?
These might seem like deep questions in an already strenuous situation. Yet when you’re talking about life and death, it’s the answers to these questions that help families navigate the daily demands of cancer.
As Jeff’s advocate, I wanted to know what was important to him so that I could adequately and intelligently support his needs if he were incapable of expressing them.
He wanted to know my opinions and perspectives and what was important to me so that he could help me in times of difficulty and sadness. He wanted to remain engaged and contribute to important family issues for as long as he could.
#3: We created “power care teams” for both of us.
Regardless of where his cancer fell on the cancer continuum (i.e. diagnosis, treatment, post-treatment, survivorship, recurrence / secondary cancer, progression and end of life), we created a team of professionals we could tap into to support our quality of life goals and answer questions.
We proactively went in search of these individuals – some of whom were affiliated with the cancer center, several who were not. All of them understood our wishes and we worked together to create a care plan.
Jeff’s power care team included: me, his medical and rads oncologist, physical therapist, occupational therapist, palliative care doctor, pain management team, nutritionist, acupuncturist, integrative oncologist, massage therapist, psychologist, and friends.
My power care team included: Jeff, psychologist, massage therapist, friends, family, support group, doctor of osteopathic medicine and nutritionist.
This purposeful and thoughtful approach to creating individual care teams delivered breathing space to us both. No one told us to do it. It wasn’t suggested to us that we explore this as an option.
We learned from the first cancer diagnosis that adding smart resources to our partnership would help us to retain our sense of self and be strong enough with a clear mind to show up for one another as we faced these serious challenges.
Did We Go Crazy?
Even with our care teams, it wasn’t always bluebirds and rainbows. Yet it did help us to feel more capable of navigating the rough patches with greater insight, courage, and grace.
There were times when I threw down tough love with Jeff to tap into a member of his care team when he was at a low point. And he did the same for me when I was having a tough time coping with the seriousness of what we were facing.
At the end of the day, these 3 tips helped us handle the demands, especially as the disease progressed and our conversations shifted to end-of-life topics.
My hope is that you and others you know can benefit from the experiences Jeff and I walked together.
If you are currently cancer caregiving, and you’ve found something that has worked for you – please share in the comments.
Cancer caregivers, in particular spouses and partners, are a high-risk caregiving population given the intense nature of the care they provide and the duration of care. The more we can share our valuable insights, the greater likelihood we can help other cancer caregivers remember there are tools, support, and resources available to help retain their well-being and positive quality of life. And that no matter how challenging the experience is, there are solutions – there is help.
With gratitude, Jen