Who Suffers the Most?
Posted: April 6, 2026 Filed under: Brain Cancer, Health, Life's Observations | Tags: Caregiving, GBM, Glioblastoma Leave a comment
I have been thinking much on the subject of loss, in regards to brain cancer patients and their primary caregivers. The question came up in a recent support group conversation about whether it is the patient, or their closest (primary) caregiver who suffers the most. Due to both the cognitive and physical impact of brain cancer, patients often have to give up favorite activities or subject matter expertise for which they were known professionally. Think of the accountant who can no longer manage their finances, or the ski instructor who can no longer ski, let alone instruct. Brian had to sell his motorcycle and no longer sails.
I chatted with Brian on the matter, and we each have our own takes, but the general consensus was “it depends.” For Brian, he found the best path to happiness (for him anyway) was to embrace his current situation and look back on his former life with fondness versus regret. He has many happy memories of riding his motorcycle and no regrets for selling it when he could no longer ride safely. He has kind of a unique take on life, but he does not think of having to set aside various activities in a negative light. He prefers to appreciate the goodness that he has now. With that in mind, he commented that he thinks I am often more hung up on his losses than him. It is true that I am not nearly as Zen about this all as he appears to be. He could also be riding the wave of denial, but it seems to be serving him at the moment, so who am I to challenge it.
Initially, I was fired up to expound that caregivers can experience even more loss than their patient, and I was ready to rattle off various scenarios in which I suffered more. (How noble of me, lol.) But the more I (over)thought about it, the more I feel like this horrible journey is not a suffering contest. There is no prize for the one who suffers the most. You can always find others who suffer more than you, but that does not diminish your own pain. Think about the famous person who seemingly has everything and then ultimately takes their own life (Kate Spade and Anthony Bourdain come to mind as examples). I have lost much in this journey of care-giving for a spouse with Glioblastoma, including leaving my career, but I feel extremely lucky that Brian has been stable as long as he has. At the same time, the specter of recurrence hovers ever in the background. I try to honor the positives and acknowledge the negatives and live somewhere between the two ends of the suffering/celebrating spectrum. Some days I am better at it than others.
It also feels disingenuous to even suggest anyone other than the brain cancer patient would suffer any more than the patient would. They are literally losing part of their mind – the thing that makes them them, and ultimately lose often their very life to this diagnosis. Is it even possible to suffer ‘more’ because you bear witness to their loss as well as experience your own? But yet I have to ask, why do we proclaim that the patient suffers more, or even try to compare suffering between patient and caregiver? It seems to me that we all suffer in one form or another and there is not a need to designate the patient as the ultimate sufferer.
But perhaps I am missing the point. I certainly believe that honoring the self-hood of the patient is paramount. As the primary caregiver, I cannot count the times I have had to protect my patient from well-meaning others, outside the inner circle, who either vastly under (or over) estimate their capabilities And the idea of losing one’s personhood is truly gut wrenching. To imagine it happening to ourselves is almost unfathomable and then to watch it happen to our loved one defies understanding. That said, do we truly ever know the suffering of another person and who are we to say our own suffering is ‘less than?’
Supposedly, Viktor Frankl said, “Never compare suffering. Everyone has their own Auschwitz.”
Brené Brown said, “Empathy is not finite, and compassion is not a pizza with eight slices.”
Maybe the greater question in all this is why is self-compassion so hard? Why do we look for ways to extend it to others and believe there will be none left for ourselves?
Tips for Getting a Colonoscopy
Posted: November 22, 2014 Filed under: Health | Tags: colonoscopy, healthcare 1 CommentThis is not a very sexy post, but neither is getting colon cancer, so let’s just leave it at that. If you want something more entertaining in the colonoscopy-lit genre, may I suggest Dave Barry: A journey into my colon — and yours. As Dave and anyone else who has ever had a colonoscopy can tell you, the procedure is no big deal. If you need one, go get one. On the scale of awkward and painful, I’d take a colonoscopy over a root canal any day.
What follows are a few tidbits that made my own experience a few months back easier and/or I wish I had known beforehand.
Planning
- Pick a Friend – they will tell you this when you call to schedule, so it may go without saying, but you will be sedated during the procedure and will need someone to take you there and take you home. No transportation buddy, no procedure.
- Pick a Day – I suggest a Friday. You will feel right as rain after the procedure, but you will be tired from both the sedation and being up all night in the loo.
- Pick a Time – this is the one I wish I had asked about more carefully. I am a morning person and figured early was better. However, I did not realize that my prep was a two-step process and selecting an 8am procedure meant I would have to get up at 4am to take a second dose of the prep. Ask the scheduler to help you factor the prep times into your selection of a procedure time. Note: you also don’t want to pick a time that is too late as your prep will then interfere with your ability to live a normal life greater than 2 feet from a bathroom.
- Pick your Poison – turns out there is more than one way to clean out your colon. Some prep solutions are more or less awful than the next. Make no mistake, to date, there is no good tasting bowel prep, but ask about the prep they are selecting for you and what are the pros/cons and options. (I had Suprep, which tasted like a liquid salt lick, but the internet says is less awful than some of the other options.)
The Week Ahead
- Go Vegetarian – or at least drop the red meat. The less you have in your colon, the less work the prep has to do. Save the surf-n-turf for a celebratory post-procedure meal and stick to lighter fare before-hand.
The Day Ahead
- No Food for you – this will be part of your instructions, but you will be on an all clear liquids diet the day before the procedure. You can eat jello, but no red or purple jello. And believe me there is only so much green jello a person can eat. Chicken broth and Sprite were my faithful companions.
Prep-time
- Chill it – mix up the prep ahead of time and put it in the fridge (unless your prep requires otherwise – see ‘pick your poison’ above). For whatever reason, chilled prep seems to go down better than room temperature prep.
- Suck it – having a straw made the prep go down way easier and faster than trying to drink it out of the container.
- Drink it – the prep is awful tasting and it is extremely tempting to bail out on finishing it all, but if you do not complete the prep and your colon is not clean enough, they will reschedule or repeat the procedure. What is worse than having to drink all that gross prep? Having to drink it again less than 10 years later…
Go-time
- Short Attention Span Theater – As far as what to do when you are traipsing back and forth from the bathroom, some folks suggest taking an iPad with you and just stay in there for the duration. I did not find that necessary or desirable. However, whatever you decide to do, it will be punctuated by frequent interruptions. I put on some of my old favorite movies that I had seen a million times and therefore could safely pop in and out of the plot without missing anything.
- Baby your butt – one of the best bits of advice I got was to buy baby wipes. You will spend a lot of quality time on the throne during the prep and your bum gets a bit tender from all the wiping.
Procedure Day
- Weigh-in – They will weigh you at the hospital when they take your vitals it will be the one day in your life you will be excited about getting on a scale.
- Take a little nap – they will hook you up to an IV and give you a sedative and then you will wake up and it’s all over. There is no discomfort or after-effects as, get this, there are no nerve endings inside your colon.
That’s it. Go home and have steak and eggs for breakfast. Relax on the sofa and watch a movie all the way through. Pat yourself on the back for doing something that’s really not so difficult and may save your life. Encourage a friend to do the same.


