A Time to Choose
In early June, I took two tests and, as fortune would have it, the results of both came in on consecutive days in July. The results of each test require me to make a decision that I am finding uncharacteristically difficult.
I’ve never experienced stress from exams. When I was a kid, exams were the period where you got no homework for three weeks because everyone else was studying. With one exception, I had never studied for an exam before this one. When Miss Mills said, in the December before my O levels, “You should be studying about 8 or 9 hours a day by now.”, I just laughed. I didn’t do 8 or 9 hours of studying total in my last two years at school (*).
It was different this time. A sudden panic came over me before the exam and I hit the books for only the second time in my life. I studied hard.
I was stressed as hell waiting for the results too. I’ve never experienced stress for a test result before. My spidey sense said I had not done well and that I would not get the result I wished for but, when the result came after a long period of worrying, it turned out that I had actually done well after all. My spidey sense was wrong. I got a distinction. I was as confused as I was relieved.
The day after that happy result, we trudged up to Southmead Hospital to get the results of my MRI.
This is my sixth MRI but I’ve never experienced scanxiety before. My friend Kristina in Canada has the same diagnosis as me and every scan is torture for her. I felt something of that torture this time around and my spidey sense told me that the results would not be happy results. When they called to make the appointment, my first thought was
Hmmmm. They usually give me the results over the phone. I doubt they are making me go all that way to tell me everything is fine.
My spidey sense was right this time.
Story so far for the people just joining us: I was diagnosed with a brain tumour last year. The tumour is too big for surgery or radiation and I had previously declined chemo so I am on watch and wait with six monthly scans to check for progression. This current scan showed that the tumour has not only grown significantly since the last scan; the tumour has crossed the “midline” which means that as well as filling most of my left hemisphere, the tumour infiltrates my right hemisphere too. Not a happy result.
The consultation was a good one. The Stern Surgeon wanted to do a full craniotomy to get an accurate biopsy (the previous biopsy was inconclusive) but the Lovely Oncologist said that I could go ahead and do chemo without the biopsy if I wanted. I was deadset against the surgery but I was only 90% against the chemo. We agreed to reconvene on Monday to talk the decision through. I did more research.
The chemo of choice for a low-grade glioma is PCV. It’s actually three separate chemos in one (two oral, one intravenous). PCV brings all the usual chemo fun like nausea, hair loss, anaemia, loss of white blood cells and cognitive problems, but it’s maybe not as harsh as the chemo that breast cancer or colon cancer patients endure.
Vincristine (the V in PCV) also brings the bonus gift of neuropathy (numbness or tingling in your fingers and toes) and procarbazine has a list of prohibited food that contains practically everything I like to eat including mature cheeses, proscuito, marmite and … **drumroll** … beer. The chemo is given in up to 8 cycles of 6 weeks which means practically a year of feeling crappy with all my favourite food and drink forbidden.
On the upside, there is no evidence that PCV is effective on gliomas without surgery. By the time Monday came, I was 95% sure I would refuse chemo.
It makes such a difference to have a friendly, engaging oncologist to talk to. Meeting with my neurosurgeon is like discovering that my headmaster is going to be supervising my viva voce examination. If he had been a character in a Charlie Brown cartoon, he would have been drawn with a cloud over his head but my oncologist is like a summer’s day.
One of the bonuses of declining surgery is that my care has been transferred to the Lovely Oncologist who listens to my fears without dismissing them. I also feel more comfortable arguing with her, and when we argue, it feels like we are arguing our way towards the truth rather than arguing for Argue Points.
Lovely Oncologist made some good points.
Lovely Oncologist: Not everyone gets all the side effects and most side effects go away as soon as you stop the treatment. You’ll be monitored all the time and we’ll stop the treatment if the side effects get too much to bear.
And that list of prohibited foods…
The Lovely Oncologist says that most patients don’t have a problem with food (or beer) interactions and, if there is a problem, it will show up in the tests and we’ll address it then. She thinks it’s cruel to deprive people of the food they love unless there’s an actual problem. I think so too. My Decision-O-Meter ticked up a little.
Lovely Oncologist: There are usually 6 cycles of chemo rather than 8, though many people don’t even make it to 6 and there’s no obligation to continue even if I just change my mind. I can quit after the first one if I am not digging it. My Decision-O-Meter ticked up a little more.
Lovely Oncologist: It’s true that there are no clinical trials that show benefits for patients who have not had surgery but, anecdotally, many patients do see benefits. In the best case, the tumour might shrink or it might just stop growing. No guarantees though and there is no permanent cure.
How about you think about it overnight and let me know tomorrow? We’ll have you sign the forms now so you don’t have to trek back up tomorrow to sign them. You can just call the nurse and let her know.
Tomorrow is here now but my decision has not yet arrived. I thought laying awake all night might help, but it didn’t. Maybe writing about it will provide me with the answer?
So here I am.
I’m essentially trading 36 weeks of misery (LO: it might not be so miserable!) for the possibility of an extra month or a year or a decade of life with no hard evidence to help me decide either way. If the chemo is successful, I might live another 15 years. But I might live another 15 years anyway. Or not. I might endure my 36 weeks of misery and it makes no difference at all. The worst thing is that I will never know whether it helped or not (LO: unless the tumour shrinks!)
On the flip side, we talked about what my decline might be like with no chemo. It sounds peaceful; the kind of ending one might wish for, and I find a certain romance in the idea of journeying peacefully into the night under my own free will. I’m ready.
Once this decision is out of the way, I have to decide what to do with my philosophy degree. The first friend I made at the Open University was diagnosed with cancer halfway through our second class together. I was diagnosed a few short weeks later and Elizabeth was the first person I told.
We talked every day about philosophy and about dying, and Elizabeth was trying to finish her final assignment when she died last summer. Elizabeth’s chemo was brutal and her death was not peaceful. Do I want to be struggling with assignments with a sick bucket by my side?
I don’t think so.
Tough news…tough decision…all the best
For some folks, it may be that cancer diagnosis and treatment is a degree in philosophy
Claire ATX
The road will have a lot of uncertainties. But like every decision we take in life, we’ll always wonder if it was the right one. We are with you all the way with love and support xx
Love you, missus.
Not the best of news to read Kevin. You are the type of guy to toss a coin several times to get the answer you wanted before you started. Gut feeling will always work best following the careful analysis which you have done.
Best wishes
Do you know about the toss-a-coin method of making a decision, Graham? You promise to abide by the coin-toss and see how the result feels. If the decision feels wrong, you can change your mind but you have to commit to the decision deeply enough to really know how it feels.
I think I’ve decided but I am letting the decision settle for a while now to see how it feels.
Best wishes on your adventure too, Graham!
Wishing you peace. Wishing you comfort. Sending lots of good wishes your way across the pond, for whatever that’s worth.
NJ in CA
Thank you, Norma Jean!
Sending you my support ?? love and I hope you reach a state of peace with your decision x
My heart breaks for you. What a tough situation this is.
People have widely varied reactions with Chemo. My ex-husband had the same treatments for spinal cancer and did very well with them including minimal nausea (thanks to ondansetron) but lots of fatigue. His neuropathy is fairly mild.
However, his oncologist said he was exceptionally tolerant of the medication. That was more than 30 years ago and he’s still alive, but every different kind of tumor.
I have no idea what I would do in your situation, but please know you are in my heart.
??????
My heart goes out to you.
Do keep us posted as your energy allows, but only if it helps you know we are witnessing your experience with an open heart and all our wishes for comfort and ease.
Mr. Clown, I have nothing to offer you but positive thoughts and prayers. And the knowledge that people are in your corner.
Thank you, John! I have a busy corner and it feels good.
I’m sorry and so sad to hear you have this very hard decision to make. Only you can know what is right for you. Sending you love Kevin.
Thank you, Di! I feel like I have made the right choice. No chemo for me.
Starry Night Over The Rhone is my favourite of his. I think if I had a decision to make, I could spend time looking deep into that picture and my way might well be revealed…
Cheers mate.
That’s pretty much how it went down, John. I was looking into the picture when I decided.
But I could have told you, Vincent
This world was never meant for one
As beautiful as you.
I’m so sorry for the situation you are in. Sending hugs.
Thank you, Justine! I’ll accept a real one in a couple of weeks!
My dear and cherished clown. You are magnificent. I think anger would be a normal approach to your nightmare. Where the feck are words of wisdom when you need them? You must be so conflicted. Your temptation to turn your various thoughts into a brilliant question for philosophers is admirable but don’t let it stop you being utterly furious.
This has been a turbulent month for sure, Robin, but I am far from angry. And now that I have made my decision, I am serene. Happy, even.
What else is philosophy for if not to help us to know how to live?
You are an admirable chap
That’s a beautiful sentiment. I am glad you feel serenity after your decision.
Kevin, I am glad you found your decision and are serene. You never know what the outcome will be for certain but I hope you get decades more life. I am so glad that you seem to be living the time you have well. Congratulations on the philosophy test!
I’m so sorry the news was bad, and I’m sad that you’ve been forced to make such a tough decision. I can’t imagine a better education to make such a difficult decision with than a study of Philosophy. I enjoy every one of your blog posts.
Thank you, Emeline.
I am still getting over you leaving California. Seems like we did not hang out enough when you lived here. You have had some difficult news and decisions. You have my support either way, anyway. The way that looks is we should game more on-line.
Thanks, Steve. I’ve been here nearly six years now! How the years fly by!
I’ve had some hard times in my 72 years but compared to what you are facing it’s been a picnic. Yes, philosophy is always good (though it doesn’t necessarily need to come from academic philosophers). Do you know of Eric Hoffer (1902-83) the American ‘Longshoreman Philosopher’? A wise man. My very best wishes for you in the time ahead.
Thank you, Graham! And thanks for stopping by. That’s twice we’ve agreed now. Who said that liberals and conservatives can’t agree!?
I don’t know Eric Hoffer. I’m looking him up now.
Not sure my previous post has taken so here it is again:
I’ve had some hard times in my 72 years but compared to what you are facing it’s been a picnic. Yes philosophy is always good (though not necessarily from academic philosophers). Do you know of Eric Hoffer (1902-83) the American ‘Longshoreman Philosopher’? A wise man.
My very best wishes Kevin for the time ahead.
❤️.
Great to see you yesterday.
Scythe at the pub next time?.
Scythe at the pub!
Love Scythe. Too bad your pub is not near mine. We sometimes play on Steam. Would love to talk Kevin L into it.