Poorly differentiated signet ring cell adenocarcinoma of the appendix is quite a mouthful. As an oncology nurse some of the words resonated with me, maybe initially not to the degree they should have. August 2008 my husband Richard and I had two months prior just seen our youngest child through his second battle with Retinoblastoma the most commonly diagnosed pediatric eye cancer, but sadly a new battle was on the horizon for our family. On a weekend camping trip Richard had vaguely complained of abdominal discomfort. By Monday mid-day the discomfort worsened to the point Richard required medical attention. He was admitted to the hospital for what we assumed appendicitis and a routine appendectomy.
Two days later our entire world would change. Relaxing at the swim club with our two pre school aged children, I felt I was giving Richard much needed time to rest and recover from his surgery. Little did I know I was leaving him alone to receive one of the worst phone calls a person could get.
Pathology showed Richard had a very aggressive type of cancer with a mean survival rate of 18 months. Both being nurses we armed ourselves with as much information as we could, made the best decisions we could and took any risk available to give Richard as much time possible. During this battle there was little to no discussion initiated by our medical teams regarding end of life decision making. Richard would joke naming his medical status “TC” for terminal cancer. We knew he was dying but couldn’t do much more than fight the good fight. Looking back I wish I would have found more courage to broach the topic. However when the time came I realized Richard did not want to be a part of the decision making process regarding how the end would go. He had faith that I, his wife and partner 15 plus years would make the best decisions for him.
We had briefly touched on the topic of hospice midway through his fight. His words verbatim, “I will die within 2 days if I go onto hospice.” With this statement burned into my brain I wrestled with what to do when we had recently been told there was no more to be done. Richard’s cognitive status sharply declined very abruptly late February 2010. With all the bits of courage I could muster after the hell my life had been since our son’s diagnosis 3.5 years before, I picked up the phone and made the call no 38 year old women should ever have to make. I knew my strong willed husband would hold true to his statement about dying once enrolled in hospice. I knew I would soon be widowed facing a whole new set of life challenges raising two kids on my own, but non the less having the support of an amazing hospice crew for as little or as much time as we had left was invaluable.
The intake nurse came to the house the next day, Monday March 1st. I made it very clear Richard was not to be told any of the staff was from the hospice agency, they were simply home health staff I brought in. Everyone understood my position and agreed Richard would not be told he was on Hospice. Despite his altered mentation, he knew without being told. We made as little adjustment as possible to our home environment. Offered a hospital bed, I graciously declined knowing Richard would prefer the comfort of his recliner chair in his last days. Our army of supporters and I would figure out how to care for him in the chair if he became totally dependent on us.
The next 48 hours were a bit of a blur but it was evident the time was near. Family and friends gathered around the recliner Tuesday evening for what would be the last time they would have the blessing of interacting with Richard. We laughed and cried and made Richard feel so very loved. Richard passed early the morning of Wednesday March 3, 2010 his mom and I at his chair. Instinctively I knew how he wanted those last moments to go and I kept him from any struggle as he completed his journey.
One never thinks they will need to have that talk, but we all do. As a medical professional I use my life experience to have that conversation no matter how challenging it feels. I feel it’s my duty to at the very least encourage those I care for to start thinking about what the end may look like to them.
Post Script: 6 plus years later our son is doing well, a healthy, happy 10 year old boy. Our daughter is on the brink of turning 14 and looking forward to going off to high school next fall and I, if I say so myself am doing an amazing job juggling single parenthood, a full time career and an amazing new relationship with a man Richard would be proud to have in his children’s lives. We have just moved from our family home in order to bring closure and invite new wonderful experiences into our world!
Thank you for reading our story. I hope it brings comfort or mindfulness to those in need!