This is kind of a rant, and yes, I’m angry, and to be honest, I think you would be, too, all things considered.
I’m finding myself really wishing that all of my doctors would have just been up front and honest from the beginning. No outright lies. No half-truths. No hedging. No hiding behind “we won’t know until x time or x procedure or x test is done…”
I’m done with unclear communications or complete and outright failures to communicate. There’s no reason a surgeon can’t tell you the typical restrictions for a surgery they perform hundreds of times a month. I’m tired of “if we told you the truth, nobody would do this.” You’re damned right most people wouldn’t do this. Not if they knew the truth. And certain not in this time when we are starting to recognize that the quality of life is more important than the quantity of days we have left. If my choice is to spend my life savings on chemo, surgery and radiation while losing my ability to think straight, walk, and lift more than 5 lbs for the rest of my life, or go travel and see and do all the things that I’ve wanted to do *and* take my family with me, the choice to live and die with cancer without the side effects and years of looking over my shoulder waiting for it to come back would have been a whole lot easier.
But those aren’t the choices laid out to you. Nobody tells you that chemo will rob you of your ability to think, multitask and remember simple things. Nobody tells you that surgery to remove cancerous lymph nodes and the following radiation will leave you so literally scarred that you won’t be able to move your arm right ever again. Nobody tells you that your immune system will be forever compromised and you’ll be susceptible to every little bug that comes along. Nobody tells you that your body and your life and everything about it will never be the same again.
What they tell you is you’ll have 5 months of chemo and then we’ll put you on another drug that we still don’t know what benefit there will be to having you on it for the time we have planned. Faced with surgery that will transform all that makes you outwardly a woman, you won’t get to choose how you will look when they’re done. And radiation, well, we’ll tell you that it’s a month of treatments, but won’t let you know that those treatments will be every day in their facility, and oh, by the way, they’ll go on for at least 6 weeks or longer. Oh, and the only parking we’ll cover is for chemo treatments. Why only chemo? Who knows. Surely with the money you saved in parking for chemo treatments, you can afford to pay to park for 3 months for all the daily appointments we now require.
Oh, and by the way, you start these treatments next week. There’s no time to digest all of this information and make the choices that are best for you. We can’t wait any longer. They don’t care that some people’s lives are immeasurably and forever changed, and not for the better, by these treatments. Because the cancer you have is really aggressive and we’re going to treat it very aggressively. And your life, as you know it, will no longer exist. You see, you’re going to have to give up your career. Oh, and you won’t be able to swim for exercise anymore. Well, you won’t have the stamina to ride a bike more than 5 blocks, either, but please do find a way to exercise without moving your arms while we fill your body with poison that will make you feel tired and weak all the time.
They know these things. They know chemo brain is a real thing. They know it lasts for years and years but will tell you it’s temporary. Same with neuropathy, weakness, immunity and fatigue. The worst part, I think, is that when they do acknowledge that there are long-term issues, they aren’t interested in treating them. As another survivor put it, “We’ve faced the big guns of cancer treatment, but now we’re back home the long term injuries that destroy our quality of life are treated with Band-Aids”.
There are days that I wish I’d have followed through with medical school so I could be on the other end of this conversation. Really, Doc, how much would you be willing to give up to have one or two or 5 more years? None of this? Yeah, that’s what I thought.