Sitting here bedside with my dad, who is nearing the end of life 22 months after learning that his bladder cancer had metastisized. It has been an up and down 2 years with more ups than downs. The numerous chemo treatments kept the cancer in his liver at a manageable size while he was able to enjoy his college football games and the birth of his second granddaughter.
The last four weeks have been a dizzying series of events with him appearing to have re-energized only to slow down in eating and mobility. He attended an all-day tailgate and all-night college football game only four weeks ago, it was incredible (both the win and his energy and attitude that day). Then that week he became fatigued. We kept urging him to eat supplement-filled shakes and drink Gatorade, but he could not beat it. At the direction of our doctor, we signed up for Hospice two days ago. At that point, I did what is the hardest thing I have had to do in my life. Due to the increased fatigue combined with some confusion, I had to explain to my dad what was going on. He was still fighting and realized that he wasn’t eating very well, but not sure if he really grasped what was going on. He asked me what was going on and to tell him the truth- I explained everything with the underlying message that he had only a few weeks to live.
I am being blunt in this post because it is the truth and it is unfortunately the outcome in most of these advanced stages of cancer. The last few days have been filled with visitors and it is hard to get him to talk about all of this even after asking him directly about it. It is too surreal to describe, but our family and friends have been an incredible help. This Hospice program is also wonderful so far, assisting us with medical equipment, prescriptions and bringing forward some of those difficult discussions (about funeral arrangements…). I am still trying to figure out how to say goodbye, but more importantly thanks for being such a great father…and maybe it is simple as that, thanks for everything…. Still working on that.
But I am writing this for two reasons: First, selfishly, it is a forum to reach out and communicate in a different way. Second, and more importantly, to provide some lessons learned and hopefully help some others in the same situation.
• Talk candidly about end of life issues after a terminal diagnosis- religion, after-life beliefs, burial issues, etc…. Then forget about it until hopefully years later…..
• Spend more time talking about current great life experiences or past great memories rather than about current health conditions (we spent so much time asking dad how he felt physically throughout this whole thing, it was a real broken record)
• Ask your survivor about advice that you may not be able to get from them later on (tips on being a good parent…)
• Never be afraid to ask more questions from your doctor
• Never be afraid to ask for a second opinion or a referral from your current doctor to a major cancer center
• Build your support team now and try to find those couple of people who can help you in favors (errands, etc…) and emotional support
• Say I love you at the end of every conversation or day with your survivor
I appreciate this site for all the useful information, I wish that I would have found it and used it much earlier in my dad’s diagnosis of superficial bladder cancer. Like others on this site, I think there should be better education by doctors at the early stage of this disease. My dad had superficial bladder cancer for a couple of years and we never took it as seriously as we should have and I don’t think his doctor did either. Thanks to many others who have provided some words of encouragement throughout the years. God bless.
Toms Son