What do we say to the God of Death?
Story so far…
It has almost been a year since my GP sent me for an MRI. She called me at the pub to tell me I had a brain tumour.
A super-duper MRI confirmed it as a diffuse low-grade glioma. It’s terminal and there is no cure. The surgeon wanted to do surgery (duh!). I declined.
The oncologist recommended a biopsy to determine the type of glioma. We need the type to choose the right chemo — and because I am a curious sort of person. The biopsy was inconclusive and told us nothing. The oncologist recommended chemo anyway. I declined.
The tumour is too big for radiation. I declined all treatment.
The only other option is to monitor the tumour with an MRI every six months and I had the first one in December to set a baseline. The results just came in and showed no growth since the original MRI.
I’m approaching my first cancerversary now. It has been a wild ride. I didn’t expect to make it this far.
But there is a lot of paperwork involved with dying.
- Write my last Will and Testament.
- Arrange my funeral (cotton shroud in a shady corner of woodland).
- Draw a treasure map to show where the gold is hidden.
- Register a Power of Attorney.
- Compile my funeral playlist.
- Teach my family how to adjust the thermostat and pay the council tax.
But then when you are not gonna die imminently it all gets very confusing. If I am dying next week or next month or next year, I can plan. I can book a trip to see the elephants on the Serengeti. I can cancel my appointment with the dental hygienist.
The uncertainty is hard to bear. Three people close to me have died of a brain tumour and they all died quite quickly. I expected to do the same. When you know you are going to die soon, you can plan.
If I am gonna live for another 20 years, I can plan for that too. Work, work, work. Pay mortgage. Save money. Buy new glasses. Get my teeth cleaned.
Not knowing anything makes it hard to plan. It’s more stressful than dying.
The idea of going out like a Hurricane is quite romantic.
And when it’s over I’d just as soon go on my way
Up to some paradise
Where the trout streams flow and the air is nice
And ride a horse along a trail
Being stuck in the Doldrums is less romantic.
Anyway. No growth. Good news for now. One step at a time.
Great news to read of no growth. Kevin, you may yet get to die of old age. Switching off countdown mode and planning for the future again comes as a bit of a shock.
Best wishes
Graham
If I could I’d go back one year and skip the first mri. Things were much simpler and care free. Although I do appreciate each day more and more everyday…but at what cost?
So much to be said, but for now: I am so pleased that your tumor has been revealed to be capable of long periods of inactivity. Scanxiety is real, for patient and family and friends and colleagues and others, and recovering from that after a big test can take a while even as you and others may wonder why you’re not singing from the rooftops because the results weren’t bad. I hope time will take the edge off for you all. Meanwhile, yeah, keep taking that next step.
The Serengeti sounds like a jolly good idea.
First of all, I am so glad to receive another installment of Ragged Clown. I was thinking of requesting one.
Second, there was a New York Times article recently by a woman who expected to die quickly during the AIDS epidemic yet benefitted from new treatments and is still alive today. I have heard stories that some AIDS folks blew their savings on fabulous trips, only to learn that they would not die so had to start saving again.
There’s a Greg Brown song with the line, Everybody’s just waiting their lives away. I will find it and send it to on Smart Patients.
Loved the Dr. Seuss. And the last page from the more recent book.
Once again, thrilled there is no growth. I hope the tumor gives up the ghost or moves out-of-town. Maybe to a spot in the lovely English countryside. Somewhere along the paths around Bath would be a nice area for it.
Perfectly said as always ….xoxo
I am going to be brave and post this idea.
I recently finished How to Die by Seneca, translated by James S Romm. The straight-forward considerations about the fact of death were refreshing to me.
So today I was thinking about Not Today, and I don’t think this works for me because I know I do not have that control over death.
I think what works for me is, What if I died today? I tried asking myself that question today, and I had pleasant thoughts about why today would be an okay time to die. I thought positively about my past and about my current life. I was content.
I am 73 years old, had a successful career, lots of travel, and quiet retirement (mostly). So this may make it easier to answer to the question, What if I died today? I guess it’s like that idea of having a beer with death every once in a while, realizing that life has precious moments that are fleeting,
I didn’t think of “Not today” as making a choice as much as saying “It’s not my turn yet. Come back another day.”
The quote is a line from Game of Thrones where Arya’s Dancing Master (swordmanship instructor) teaches Arya what to say to death when he comes calling: “Not today.” In a later scene (SPOILERS), the dancing master doesn’t say “Not today” because he knows it is his turn.
I do think it’s a good question the way you frame it though, Claire. I recently read “Four Thousand Weeks” which refers to the ridiculously short span of our lives when you count the weeks and gives advice on how to spend them doing what you want to do rather than working to pay the mortgage until the end.
I asked myself your question when my 4,000 got adjusted downwards due to an accounting error. I spent a couple of my weeks just watching the ducks on the harbour. I was ready.
It’s harder to choose when you don’t how many weeks you have left.
Thanks! I didn’t know about Game of Thrones reference or 4000 weeks.
Damn accounting error…
Sorry to read about the tumour! Glad to also read of no growth!
The thing is, you haven’t got any less time left than you had the day before the MRI. It’s (dare I write this) inductive reasoning to think you need to make different decisions the day after the MRI results than you would have the day before.
Were you happy before the MRI? Did you think you were making the right choices day-to-day and forward planning wise? Then why should that no longer be the case?
Not to be crass but we (humans) tend to assume we have lots of tomorrow’s and plan for the next day/month/year but none of us know we’ll actually be here next day/month/year – we just act as though we know!
In short I’m asking why start to make different decisions about you life choices/plan as though you now know what you still don’t actually know?
Thanks for visiting, K!
I can honestly say that the days and weeks after my diagnosis were among the happiest of my life. No problems there.
The biggest source of stress for me is the uncertainty. Despite what Hume says, there are gradations of probability between certainty and knowing nothing. If I am mostly sure that I have a lot of time left, I must plan for my family’s future. If there’s not much time left, I’d rather spend it (with my family) on fun stuff.
One might argue that I should be living each day as if it will be my last but, if it’s not my last, I still need to pay the mortgage tomorrow.
I am in no way suggesting that the substance and significance of these two situations is the same, but I had similar thoughts as I contemplated when to retire.
“If only I could know…”
“But it shouldn’t make any difference…”
“But it does…”
That was only one decision. You have many to consider. A recipe for unsettled-ness, in varieties from vague and generalized to intense and specific. Maybe the answer lies in finding the middle and settling for that?
We are stuck on “neither”, Janet.
Would having a number to plan around be helpful? Sometimes I resort to a random selection process and accept the result as fact and as a basis for making the decision immediately in front of me. “Let’s say the number is 10 and go from there.” A mind trick but works sometimes in the moment for getting un-stuck. Working with a family “committee” likely changes the dynamics, though. I feel for you all and hope for some kind of breakthrough in this situation. Seems like the most serene of the SPs are those who somehow manage to ignore/deny the existence of the uncertainty or accept and transcend it or use to their advantage. How they get there, I don’t know. I wish I did.