With JD’s health taking a nosedive again this week, I am becoming more and more angry with people talking about cancer and brain tumours as something they should “fight”. The term “fight” implies some kind of contest that can be won with wit, dedication, skill and will. That means that those who die clearly did not fight hard enough. If only they tried harder, researched their condition better, looked for that one surgeon in the US who would be willing to operate, then it would all have been different. You lose the fight because of your own fault.
Well that is bullshit. It is not a fair fight. When JD was first diagnosed, about 6 years ago, people on a variety of internet forums were telling me that they did not look at statistics and survival rates because they did not want the brain tumour to ruin their lives. They were going to fight it and continue as always. They were going to beat this and JD could beat it too.
What I really needed back then was not this form of denial. I wish someone on one of those forums had just come out honestly and said: this is going to kill her. On average, she’ll live 6 years. yes, there is a chance that it can be cured, but more likely than not, she will die from this.
That would have given me hope but not false hope. Because the majority of people DIE. The majority of people do not live longer or survive it. it is therefore unfair of people and doctors to suggest that, yes, you may die of it but there is a good chance of a cure. That is like saying there is the same amount of proof for Darwinism as there is for Creationism. It is an unfair and unbalanced comparison of two options, one of which has actual proof and the other has none or very little proof. You can not present them as two equal options.
The term that gets abused the most is “survive”. You survive something like breast cancer where you are declared cured and cancer free. Many people I speak to claim they are brain tumour survivors just because they are still alive and relatively symptom free xxx years after diagnosis. This is, once again, giving people false hope. You are still ill with a brain tumour as long as the tumour is there and ticking away like a time bomb. So when people are saying they are surviving, they are giving others (people like me, who initially misinterpreted this term) false hope. All it means is that the disease is taking longer to kill them. You don’t survive most brain tumours. Some just take longer to kill you than others.
JD and I never looked for a second opinion. We never researched the internet to find some doctor in the US who might operate on her. We never questioned the doctors that treated JD. We believed they did the best they could.
Does that mean we did not fight? Does that mean JD is less deserving of a cure than those people who raise funds, run marathons whilst on chemo, go on a mountain trek through the Andes? Less entitled to a life than those who spent all their time looking for a second or third opinion, finding and funding an expensive trip to the US for surgery? Are they the real fighters?
Yes, I am angry. Because amongst the shouting about fighting and bravery, the voice of those who just accept their fate and try to make the best of the time they are given is lost. But when that voice does get heard, it is shouted down for “being negative” or for taking away hope for those “more positive”.
So it is OK to give people a false sense of hope because it makes them feel better but it not ok to give people a realistic idea of their chances to survive, because that is depressing?
Doctors seem to work on a Don’t Ask, Don’t Tell policy. If you don’t ask, they won’t tell you how long they really think you have left. But how can I know what to ask if the only thing I keep being told is: fight, hope, brave, good chance, we’re optimistic, etc…
If JD and I had been told with more certainty that she would most likely die around 6 years after diagnosis, we would have made that trip to Australia years ago. We would have gone to Canada years ago. We would not have had to settle for a handful of quicky trips around Europe.
But even the doctor, when we asked him about JD’s prognosis, said things like: Oh I have patients who have been on this drug for years and they are still doing well. At the time, we thought that was a good answer. Now I realise it was the worst answer. It made me feel dismissed in my fears that JD might not be one of the lucky ones. The doctor should have said: Well, I have patients on this drug who have been doing really well, but generally, the average time for this drug to stop working is xxx months. That would not have upset me or made me feel desperate. That would have given JD and me time to get our affairs in order, do the things we wanted to do, instead of thinking there was a real chance of her still having years to live. Now, we plodded on as normal. JD tried (and failed) to finish her PhD, I kept my job.
And by the time JD got really ill, we did none of those special things we said we would do.
I am not angry at people for giving us hope. Hope is a good thing. I am angry for not being given a straight forward and honest opinion on what was most likely going to happen. I have had to look on the internet to see what happens in the final stages of life with a brain tumour, and it is not pretty. Not that the doctors told me any of that…
Yes, I am pissed off. Very much so.