The Most Challenging Part of the Early Journey: Telling Others
Christmas morning, 2018. Yes, we are pranksters. Includes daughters Kelsey (and husband Mike) and Tyler (and fiance Jeff), exchange daughter Laura (and spouse Jacq), brother Todd and Robin.
Carey -
I found this to be the most challenging part during the early phase of my illness. I made only one physician change (my initial oncologist) during my illness, and the issue how to tell others set those wheels in motion. This was a huge worry in our minds as I met with the oncologist and his nurse practitioner.
Nurse: “I’ve been diagnosed twice now with a serious cancer. It’s always difficult to break the news to family and friends.”
Me: “ So how did that go each time?”
Nurse: “Not well.”
“Well that’s not reassuring!” I thought. The oncologist had little to add about how to tell others of my diagnosis, a critical step in the journey cancer patients must take. So Robin and I were left to our own devices under his broad advice of “It’s individual for each person.”
We chose to wait until we had as much data back as possible, such as tumor molecular genetics, radiation therapy timeline, projected surgery date and rehabilitation and chemotherapy/immune therapy schedule and side effects. This perhaps decreased the anxiety of the unknown for family and friends. We told the kids and my brother first, geography necessitating these conversations occurred telephonically. We initiated a Caring Bridge page and prepared an announcement. I called a number of close friends; rather than becoming less stressful, each call became harder and more tedious. I called these the “downer calls” (like the bird sitting on the wire above the newly washed windshield). We finally developed an e-mail announcement I sent to most friends and the Indiana University Emergency Medicine alumni list. In it, we requested no mention of my illness on social media. Caring Bridge would house our updates and it provided a forum for posts of support and encouragement. It bears consideration that for some of the message recipients you open the door to the Kubler-Ross stages of grief. Each person will work through the news and those stages at their own pace. I had quite a few friends who sent an e-mail well over a year later, noting that they had attempted to write earlier (and some repeatedly) but couldn’t bring themselves to finish the note.
Indeed, the decision about how and who to tell is indeed individual – both for the news-bearer and the recipient. Not telling anyone except for a small inner circle of folks such as spouse and immediate family is an option, although it precludes others from sharing your journey with you. Some vulnerable family and friends may do better not knowing right away. And there is a very real issue that once you disclose that you have a terminal illness, you are treated differently by some. This protective mechanism is understandable, and difficult to predict ahead of time. Some friends will seemingly disappear. It’s their coping strategy. And it’s fine.
This phase of the journey continues to stand out as the most challenging to date. Our thoughts:
· We believe that oncology offices should all be staffed with trained social workers who can sit with the patient and possibly immediate family and at least provide the broad brush strokes of things to consider when developing a plan. We find this failure to be inexcusable even now. We stumbled our way through it, but with layers of concern and anxiety that were largely unnecessary. I personally would not use an infusion center that has significant financial operations associated with the treating oncologists. And I would recommend exploring your oncologist’s potential financial ties to industry (available on-line) in making your selection. It’s perfectly fine to seek another physician if you aren’t comfortable with the one you are initially referred to for diagnosis. Trust in this relationship is critical. You want a physician who understands your treatment hopes, provides you with unbiased options, and allows you to select the options that fit your goals. It is always appropriate to request detail about the potential downsides of any recommended therapy as well as a realistic potential benefits of that therapy.
· Consider having a “PR point person” particularly during hospitalizations for treatments and especially surgeries. Well-wishers’ hearts are in the right place, but can become a source of additional stress to the patient, partner and immediate family when barraged by repeated calls, texts and e-mails asking for status updates. The “PR point person” can buffer this and assure accurate and timely information is provided. Online sites such as Caring Bridge allow you to stay in control and minimize disinformation.
Expect a wide range of responses. Everyone will work through the news at their own pace. Except for particularly close and vulnerable family and friends, this is not your burden to shoulder.
Nicole -
Sharing difficult news with family and friends can be hard. The person sharing the news is carrying the burden of both facing the health issue as well as trying to protect the person who is learning the news. Additionally the trauma of facing a difficult diagnosis is repeated over and over. This double burden deepens both anxiety and sadness. Sometimes it is helpful to use a close friend or family member to share the initial news. “Bob wanted to call you himself but it is hard right now so he asked me to call you for him. After you have had time to process the news, perhaps the two of you can connect directly.”
When presenting bad news it is good to ask permission so the person hearing it has a chance to get ready for it. “Sharon, I have some difficult news to share with you. (Long pause so Sharon can process the information). Is it all right if tell you about it?” This gives the family member or friend a chance to agree to receive the bad news and allows them to prepare for it. They may want to find a private room or sit down before hearing it. Their life is about to change forever and allowing them the few moments between knowing they are about to hear bad news and actually hearing it helps cushion the shock. Keeping the conversation short is also important for both sides. After receiving bad news, our ability to retain information is limited so it is better to promise more information later. Allow the person you are telling the time to process the information separately from the conversation.
Setting up an immediate communication command post such as Caring Bridge is helpful. This provides an ongoing place for friends and family to find new information without constant communication to the patient and close family member. In addition to the psychological burdens and fear of a new diagnosis, the person can easily get exhausted with the initial flurry of medical procedures and treatments as well as not feeling well. Being able to read supportive comments at the time that they choose rather than feeling obligated to reply to an avalanche of messages and telephone calls helps. We need to do a better job supporting patients who have just received difficult diagnoses whether in oncology offices or the emergency department and a “new diagnosis SWAT team” using social workers, chaplains and others trained in trauma would be helpful. Creating a primer on how to tell others of your diagnosis would alleviate worry for the patient who is struggling to process their own fears.
I wish I had been involved in Carey’s initial care (he found me several months into his diagnosis) and could have supported him in how to tell others. It isn’t easy and remains a trauma for both of them even in memory. I’m going to take this thought to our next Cancer Committee and see if we can create a better support system. Perhaps those of you reading this who work in healthcare can do the same. Carey and his ideas continue to inspire those of us involved in difficult conversations. By listening to his unique view from inside and outside the system, we can all work to make it better.
Robin -
We decided not to tell anyone until some of the questions were answered and an initial treatment pathway was mapped. This led to finding excuses for why we had so many appointments or had to miss activities (like the second meeting of our newly formed book club). To make this more difficult, we are both self-sufficient and not good at communicating feelings. It was finally time to break the bad news to friends and family so Carey got on the phone (geography dictated that it be done mostly by phone). His conversations with the girls were the hardest conversations I’ve ever had to listen to. Both reacted as I expected they would. Kelsey’s response was much like my own quickly going from no way to what do we do now? And Tyler’s was the emotional response with tears and a request to have time to process and discuss it later. I am so happy that they both had support at home during this time.
Carey spent the better part of two days personally calling friends and family to break the news. It became more and more difficult until he finally decided that he had had enough and wrote an email to send out to the remaining list of people apologizing for not telling them personally. Could we have handled this differently? Probably, but I’m not sure how.
The most challenging day for me so far was not the surgery or the radiation therapy but the first day of chemotherapy. I couldn’t get over the fact that “they” were poisoning a perfectly healthy appearing person. It confirmed for me the finality of the diagnosis - this is really happening and the clock is ticking. Neither of us knew what to expect but both anticipated the worst. Fortunately, we were both wrong and it went fairly well with few side effects.
Tyler -
“Those who contemplate the beauty of the earth find reserves of strength that will endure as long as life lasts. There is something infinitely healing in the repeated refrains of nature -- the assurance that dawn comes after night, and spring after winter.
- Rachel Carson
“How [sniff] long do you have?” I managed to choke out through the onrush of tears. All while inexplicably contemplating the dead bugs and dirt that had accumulated in the windowsill next to me. That’s what I remember most about the day I found out my Dad was dying. Dead bugs in the windowsill. It’s funny what sticks with you.
Nothing can prepare you for that news. For me, it was devastating and for a long time I felt guilty and ashamed of how I reacted. Instead of asking questions or offering comfort, I broke down, could only choke out a few words between tears, and abruptly cut the conversation short to sit and stare at dead bugs on the windowsill. While that guilt and shame stuck with me for quite a while after the initial news, throughout this journey I am learning one very important lesson: It’s okay to be not okay. As painful as it may seem, fully feeling that raw emotion is important. Just like with everything in this world, it won’t last forever, so don’t be afraid to let it in. (more about this later)
While processing the initial news was hard on me, I found solace in nature. My partner was at a training in Hawaiʽi Volcanoes National Park when I got the call, so the next day I jumped in my little red Beetle and drove the two hours to the other side of the island. There, among some of nature’s most powerful metaphors of destruction, rebirth, and the constant cycles of nature, I began to process the news. I journaled as I looked out over the vast Pacific Ocean, I started and restarted ultimately unsent letters to my Dad, I pulled over to cry and then got back on the road. Grasping at anything for possible relief.
That night, when sleep once again evaded me, I drove the short distance up to the Kīlauea overlook. The glow of the lava added to the dream-like feeling of the last couple days. As I stared into the tumultuous lava lake below, overcome with the power and awe of the natural world, my anger, my fear, my grief, came pouring out. I had finally found what I had needed. Instead of trying to fix what I was going through, to find that relief, I just let myself feel.
Raw with the outpouring of emotion, I slowly began to make my way back to my car. As I walked, I looked up at the brilliant night sky. Covered in that blanket of stars, comforted by the still night around me, I felt my first tiny glimmer of peace. The juxtaposition of the chaotic, violent churning of the lava lake and the serenity of a quiet night helped put things in perspective. Both can exist simultaneously, both are important to experience, but its where you focus your energy that matters. Calm can exist within chaos. Peace within grief.
My advice after hearing devastating news:
· Give yourself space to process the news
· Try not to focus on fixing your uncomfortable feelings, try to take them in
· Try different approaches to help process and try not to be discouraged if some don’t work
· Consider spending time in nature
Kelsey -
“And what color were you thinking for the concrete?” The question came from what seemed like a million miles away and underwater, and I realized eventually that the contractor was addressing me. Less than five minutes before, I had hung up the phone after learning that my dad was dying. My thoughts were running on a fast-paced loop: I don’t care, I don’t want to be here, how is this happening, why are we even talking about concrete right now, my dad has cancer!
When something terrible happens in your life, everything seems to split. Your personal little world seems to become a bubble, isolated from the environment around it. You are engulfed by misery, grief, anger, or disbelief (or a complicated mix of all of these all at once!), and it seems like there is no escape. For everyone else, it’s just a Tuesday afternoon.
But the reality is that your life is never a bubble. There will always be outside influences, chores to complete, work to do, and normal Life things to deal with. We had been planning to add a deck to our backyard for months, and the timing just so happened that our contractor arrived as I was finishing up hearing that my dad had cancer. He was trying to do his job, and I was trying to remember how to breathe without sobbing.
One of the hardest things for me was dealing with this duality. I had this intense, personal, painful new thing to process, but I also had to continue doing normal everyday things like go to work, get groceries, pay the cable bill, and talk to contractors about concrete colors for a deck I no longer cared about. A lot of times I felt overwhelmed and angry--how could the world have the audacity to continue normally? How could I manage to do anything?
My coping mechanism early on, for better or for worse, involved a lot of compartmentalization. I trained myself to focus only and solely on whatever was in front of me right now, because I could feel myself start to spiral when I widened the horizons even a few hours or days ahead, at first. I needed time to process my emotions, and Life wasn’t giving me that luxury. Instead, I worked on it in short bursts as I was able. Five minutes spent crying in the shower, ten minutes trying to meditate in my office at lunch, an hour on a weekend morning before my household was awake. Those little intervals add up over time, and eventually as I processed everything, I was able to widen the horizons from “the next 20 minutes” to “tomorrow” and then “next week” and “next month” and finally “next year” and so on. It’s not consistent; some days are bad days and everything shrinks back down to here and now, but some days now the horizon opens up and the future is there waiting for me with all of the bad and all of the good that comes with it.