Being ‘accepted’ or ‘belonging’ to something is part of the human condition. A society, a group of friends, a professional organization, or a club, where one can feel included and heard, and shared interests that bring like-minded individuals together. Being a member of a club elevates your self-esteem and provides a forum where you share insights, experiences, or useful information with other members. It reminds me of high school or college where my interests would take me on trips to museums, playing music, skiing, or for more practical purposes honing my skills in marketing and communication to pad the empty resume when I started on my career many years ago. There was a level of excitement and inclusion being in a club.
Today, I am currently a member of a club that doesn’t have a specific name, wasn’t asked and honestly, I would never have imagined being a part of this secret society. Now that I am though, I proudly wear an invisible badge of honor and will do my best to keep my affiliation. It isn’t easy becoming a member, as the lead-up is filled with uncertainty, tinged with profound emotions and finality. However, after one’s initiation and disbelief wanes, one may recognize the significance surrounding membership – losing a parent or loved one to pancreatic cancer is the only prerequisite. There are no fees, requirements, or obligations except feeling shell-shocked after a loved one dies.
I had no idea I was a member of this secret society until I received a call from one of my high school besties shortly after we said goodbye to my mom. She apologized profusely for asking me to relive my mother’s journey, yet she and her husband needed something, something to hold onto that would give them an idea of what was ahead as her mother-in-law was diagnosed. While on speaker phone, I had rattled off what I knew that I thought would help while her husband took copious notes. I was not sure that I had anything to offer as I am not an MD, social worker, dietician, or anything medically related. When she apologized again, I said that if any of my suggestions help, then it would be worth it. In another conversation with her, she said “You know, that thing you told me really helped.” I cannot remember exactly what it was, yet I think they felt that they weren’t alone on their journey.
Fast forward to a month ago…I was contacted by a stranger whose mother was recently diagnosed with PC and she was looking for advice, not only for her mom, but for herself. She did what our family did - scanned Dr. Google for information about the disease, treatments, survival rates, doctors, etc. In her search, she found a lifeline – PANCAN – the Pancreatic Cancer Action Network! Not only does PANCAN serve the patients and caregivers, it also funds research and countless other things to help all involved. Through PANCAN, Joanna found me, and my essays - the posts where I documented my mother’s journey, from diagnosis, Whipple surgery, Chemo, calling in Hospice, as well as a fitting tribute. Throughout my essays, I tried to convey my mother’s positive outlook, her hope, and making the most of the time we were afforded together. By sharing her 4.5-year battle with others, I meant to say that no one is alone in this fight and that PANCAN will lead you to someone who will help you find the answers. While readers may be armed with statistics, recommended doctors, and clinical trials, Joanna reached out to me for practical advice – the things that nurses don’t manage, caregiving tips, or how to stay hopeful when the news is devastating. The most common questions I’ve received are:
How do I stop crying in front of my mother?
I would excuse myself for a second, and go into the bathroom, run the water, and at the same time let my tears flow. After a few minutes, I would splash cool water on my face, pat it dry, and take a deep breath as I went back to taking care of my mom and the next challenge.
I’m afraid that I will break down in front of my father. Is that bad?
I think that it is OK to show emotion to your parents as it shows how much you love your father. There were plenty of times I had a good cry in front of and with my mom. By releasing the tears, it can allow you to process your feelings, to let them out so you are then able to move on with the task at hand. If your tears and fears prevent you from being able to function then I would highly encourage you to reach out to someone like a therapist, clergy, or a social worker at the center where your loved one is being treated. Often someone is available not only to the patient but family members. Not only did the social worker help my mom process her disease, and manage expectations, she helped me in more ways than you can imagine. And it was free of charge!
How did you stay sane when taking care of your mother?
Who said I did not have a nervous breakdown? In all honesty, I’m pretty sure I did. I wouldn’t be human if I didn’t. I would take each thing I had to do and break it down into smaller pieces and then I was able to function. For example, I put together an Excel spreadsheet for my mom (and me) of all her pills and supplements, so she knew when to take them. Or my sister got my mom an Alexa and set reminders so my mom wouldn’t forget to take her pain pill. The small things we implemented made it easier for the patient and caregiver go a long way.
What did the doctor say?
When my mother was diagnosed and I relayed feedback to my siblings, I was asked “did you ask them this, or that…” and if I said no, it would start World War 3. Obviously, that helped no one. At each appointment, I would record the visit on my phone*. I would text the recording to my siblings. This way everyone heard the same thing. Additionally, we had a family calendar to add all doctor appointments. If one of my siblings could join, we would conference them in. We also decided to have one main contact with the doctor to limit his frustration with pesky family members.
*Ask Dr if OK to record.
I’m not sure what the doctor meant. Am I missing something?
After diagnosis, so many thoughts run through your head that it is hard to make heads or tails of it. It is OK to say to your loved one’s doctor that you don’t understand to repeat what they just said or ask them what they meant in Layman’s terms. When I first started going with my mom to doctor visits, whenever they brought up labs, medications, etc. I would ask so many questions. And, if I still didn’t understand, I would say “I don’t understand.” Also, it is ok to ask the Doctor to have sidebar conversations, as you want to hear curative percentages, prognosis, and when to start planning for comfort.
We received devastating news from the doctor - How do you stay positive?
This one is tough as I am more of a glass-half-empty type of person yet, I consciously try to look for the silver lining in each situation. For example, after my mom’s diagnosis, I was able to spend 4.5 years with her. She was one of the most positive people who graced this planet and I think her outlook helped her battle the disease for so long. And while I miss my mother more than I ever imagined, I am grateful for the extra time I had. She stays my North Star and if I have only a fraction of her positivity, I am confident the examples set by her will get me through some difficult things.
I can’t do this?
Honestly, no one is ever ready to watch a loved one receive a devastating diagnosis, watch an able body get weak from chemo, or have a loved one leave us. Unfortunately, I don’t have a good answer to this, except to say it is OK to ask for help. I can tell you that I received countless messages that said, “Let me know if you need anything” and the time would come when I was emotionally exhausted to ask for help until finally, someone said “Can I bring you dinner?” and I said yes. I stopped feeling guilty for accepting help. People want to help, and at the same time don’t want to intrude. Asking for help is not a sign of weakness, it shows how strong you are when you recognize that you can’t do something alone.
I feel lost without my spouse, how do I go on?
It has been almost 2 years since we lost her and not a day goes by that I don’t think of her. I made the conscious decision to turn my grief into action. I honored my mother by getting involved in PANCAN by creating a team and raising money for the local Purple Strides walk as well as becoming an advocate for PANCAN’s day of action. I brought my mother to life by sharing her story with Congress and asking for more funding.
I have come to learn that my membership is a privilege. It is humbling and an honor to be a part of this club and my involvement with PANCAN. Not only is it an extraordinary network, but my membership is also something that I could not do without, or take for granted. This membership pulled me out of the depths of grief and supplied an avenue for me to talk about my beautiful mother. It was also the push I needed to be more involved in something larger than myself. As devastating as it is to lose a loved one to pancreatic cancer, using that knowledge, to help and encourage someone else is what is all about. After receiving Joanna’s email, I wrote back with practical tips to navigate uncharted waters and eventually, we connected on the phone. My involvement in PANCAN means that I’ve helped someone else at the start of their journey then my mother’s journey was not all for naught. When I say I wear my badge proudly, I mean it.
** appeared on Pancreatic Cancer Action Network