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 ever. I studied hard.
I was stressed as hell waiting for the results too. I’ve never experienced stress for a test result like that 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 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 had not only grown significantly since the last scan. The tumour has crossed the “midline” too which means that as well as filling most of my left hemisphere, the tumour is now infiltrating my right hemisphere too. Not a happy result.
The consultation was a good one. The stern surgeon wanted to do a craniotomy to get an accurate biopsy (the previous biopsy was inconclusive) but the smiling 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, for example. 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 doctor to talk to. Meeting with my neurosurgeon is always 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. I’ll be monitored all the time and we’ll stop any 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 from PCV 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 still 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.