How long have I got?
When you are diagnosed with terminal cancer, the first thing that pops into your head is “How long have I got?”
If it’s only a short time, like a few months, you make plans for your family, get your will and power of attorney done and try to make the most of the time left.
If you have many years to go, you probably make different plans. Maybe you think about early retirement and go live by the sea with your philosophy books and a constant supply of real ale. Or maybe you make a bucket list and go see some elephants in Africa or drive a muscle car in Death Valley.
But what should you do if you don’t know how long you have? Maybe you just carry on with your everyday life. Maybe you write some code, do your shopping and walk to the pub in the evening.
When I was diagnosed with a brain tumour, I was determined not to ask for a prognosis and was ready to take whatever fate had in store for me. I have had three people close to me who died of the same tumour that I have and they all died quite quickly so I assumed that I would too. But I am still here.
Neurosurgeons and oncologists can’t really predict how long you are going to live. All they can do is look at the history of people about your age with a similar tumour of a similar size. Then they take a kind of average and add a few months for good luck.
If you are 60 with a low-grade glioma, you have a 50% chance of surviving two-ish years.
If you are 59, it’s more like ten-ish years — unless your tumour is anaplastic or in more than three lobes or an oligodendroglioma or in a scary bit of your brain.
In other words, it’s complicated.
Most people with a brain tumour join an online community and the first thing they tell you is “Whatever you do, don’t google your tumour.”
Their motivations are sincere — if you google, you’ll find bad news and most people don’t want to find bad news — but I think it’s terrible advice and said so on my blog. I think most people would rather know the news, even if it is bad news. Most people are going to google anyway and it’s better to tell them how to google than tell them not to google.
Your prognosis affects your treatment choices too.
Some people, if they don’t have long to live, will ask for extra chemo or some experimental treatment or have magnets put on their heads. Not me. I would rather go and sit on the pontoon with my little dog and watch the ducks on the harbour. If you have chosen extra treatment, that’s fine. Good for you. But it’s not for me.
What about a longer prognosis? If I have two years left, do I want to spend one of them puking? Will it make me live longer? Who knows? I’ve made it two years without chemo. If I’d had chemo would I make it to three? Or fifteen? Who knows?
Anyway. Here I am two years later, still going strong, and I wish I had asked for a prognosis back at the start. In fact, I plan to ask my oncologist when I see her in a couple of months. I’m still ready to face whatever comes along but I wish I had a bit more information to make some proper plans. If I have a long time left, I’d like to go live by the beach somewhere or maybe in the tropics. If I don’t have long, I’d rather not uproot my family. I’d rather make some plans and know that they’ll be OK.
In The Quiet American, the main character, Fowler, is approaching the end of his life and he settles down with a Vietnamese woman who prepares an opium pipe for him every evening. I would be down with that.
Or with a Maltese woman buying me boozy milkshake at Fontanella in Mdina. As long as they serve real ale and I can bring my philosophy books, I’ll be OK.
A pipe of opium, or the touch of a girl who might tell you she loves you.
The Quiet American — Graham Greene
And then, something happens, as you knew it would. And nothing can ever be the same again.
I don’t consider my cancer any more ‘terminal’ than life. We are all terminal.
I don’t use the word to describe it.
When initially diagnosed one oncologist said I had a 15% chance of surviving two years. At that time he based it on his experience administering to people with my cancer. That was over 12 years ago. Now there are multiple other treatments, so if it returns, I have more treatment choices.
The question ‘what’s the prognosis? Your prognosis?’ I take it to mean what’s your death date. To which I answer you show me your death date.
Maybe my attitude to a prognosis ‘date’ is not important to me because my (stage 4) tumors have been stable for years.
As your probably guessed, Trevor, I stole the idea for this post from the discussion going on on Smart Patients at the moment. The question kind of stuck in my head.
I really appreciated the great variety of responses there and felt informed by all of them. But I am a restless soul and will probably have to find my own way.
What a terrible situation to be in. And you know they will say ‘how long is a piece of string?’. The most they will do is give you probabilities. 🙁 Nevertheless, I hope you get some clarity.
I would love a bit of clarity. I just received my appointment for my next MRI. Maybe that will have something to say!
My impression after following your posts for a couple of years, is that by so far choosing not to treat, you have chosen to live each day as “normally” as possible and your tumor is not driving your schedule and routines except as symptoms may require. I can see why not knowing if and when and how it will catch up with you interferes with planning—planning you might not be able to consider were you undergoing a treatment regimen.
I agree with Trevor L about the universal nature of some variation on the theme of wondering how much time we have. Based on how my life and those of my parents have played out, I think that even with a guaranteed specific date of expiration from your tumor doc, you might be comfortable making some big changes with that in mind, but life could easily throw other things at you eventually that might undermine your carefully thought out plan. A different serious illness for you or someone else, a too-good-to-refuse job offer somewhere—those are just two of many possible blindsider scenarios.
How people respond to that is all over the map—some say what the hell, let’s go for it and deal with the future as it comes. Others say it’s not worth the bother of shaking things up given that nothing is guaranteed to play out as planned. A lot of us just keep thinking about it feeling ambivalent about the status quo *and* the prospect of exciting changes.
I hope your doc will have something helpful to contribute to the discussion going on in your head (and with your family, I imagine). 🙂
Thank you, Janet. Wise as always.
I was awake all night thinking about this. Something has to change — I am not one to drift along with no destination in mind. We don’t know where we are headed yet, but we have to head somewhere.
For different reasons (not a cancer diagnosis), I am familiar with that lying awake all night feeling, more convinced as the hours and weeks and sometimes months go on that something has to change and looking for the factor that will make the just-right decision on what *kind* of change seem obvious. Typically after a long spell of pondering in the wee hours and bouncing some thoughts off my partner, and spending some more weeks or months pondering and bouncing, I have awakened one morning with the conviction that today is the day and here’s what I need to do to inch toward what might be a still-unknown physical or psychological destination. “Lifey stuff” is what my grandma used to call this messy business of facing the certainty of unexpected and uncertain and unpleasant events while appreciating the satisfying and enriching events that remain and the sense that some will always remain no matter what.
I just read the prognosis discussion on SP that you mentioned above. My dad with MDS prepared for the five years his doctor described as the likely outer limit for his survival. Each year after that until his death midway through the eleventh year, he enjoyed razzing the doc about it. The doc said he appreciated dad’s giving him an outlier to mention to other patients.
It’s funny, patients seem to think that they are bothering their docs when they outlive their prognosis but I expect the docs love it as much as we do. I hope your dad got to enjoy his eleven years. I hope you did too!
It’s actually Lifey Stuff that’s keeping me awake rather than Cancer Stuff. It’s all inter-related though but I’ll have to make a decision soon.
Thanks, his MDS was discovered during routine lab work, he didn’t notice any related symptoms during those first five years, got by with infrequent transfusions! His doctor was happy 🙂
Living with uncertainty is difficult.
Doctors may not help much…
For them too, much mystery remains. Human bodies have undiscovered possibilities.
At this time, I am dealing with some consequences (to my kidneys) of proton beam therapy 4 years ago. Imaging is unclear. I’m in the middle of a flurry of blood tests.
Dealing with the confusion is hard… I am mindful of maintaining quality of life.
I am in my 80’s now. Dying would be “normal”.
But “driving in the fog” is disorienting…
I hope your docs can give you some sense of possible goals… Wishing you the very best!
Maybe one can get better fog lights?
Hi! Thanks for the link to your blog. I appreciate the insight. I thought about it when I first read the pitifully doleful few-and-far-between statistics concerning my diagnosis, and I decided that I love my life. I want to keep living the way I am living and being in the places that I love. I am blessed. I don’t have to change a thing to die happy; I haven’t missed a thing.
Loving life is the way to go, LookingUp! I love life too.
All the very best to you. I hope there is a lot more love in your future.