What To Expect After Diagnosis
Last updated: March 2021
Recently, we’ve had an influx of visitors on another site I write for who have been recently diagnosed and it reminded me that it’s probably time for a post about what to expect when you are first diagnosed. That, and time for a post about French toast – it’s neither French nor toast, coincidence? I digress, the point is, the initial phase of diagnosis is a complicated and overwhelming time, and if I can make it easier for even one of you, then great. Hopefully more than one.
When you hear that word, “cancer” time pretty much stops. Not in the fun, Michael J. Fox, 88 miles per hour way, but in an, “Oh My God, did he/she say cancer??” It feels like a punch in the gut, and I mean it can literally feel like someone physically punched you in the gut. It’s cancer, be it lymphoma, MM, or any of the other host of cancerous conditions with names too long and difficult to tell someone what you have. It’s terrifying, electrifying, heart-stopping, and mysterious in equal parts.
There is no right way to act when you get your diagnosis
So, you’ve just heard the “c” word and you’ve had your record-scratch moment. Now what? I know what you want to do – run out the door screaming and punch and kick everyone and everything you see. You’re angry, I’m sure, and you have every right to be. Why me? Why not that guy who drowned 17 kittens on the internet? Why not, well, you know who? I give to the United Way, I volunteer at a soup kitchen, I learned how to mix mortar and built a shelter for homeless teens with my own two hands, WHY GOD WHY?? We don’t do that though, do we? Usually what really happens is some combination of slinking out of the doctor’s office and crying, dazed and confused. Well, first of all, let me say that this is totally normal and in addition, there is no right way to act when you get your diagnosis. If you want to go feed the ducks at Central Park at dusk, then do it. If you want to go and shoot the ducks at Central Park at dusk, then, err, actually, don’t do that, but you get my point. Whatever way you need to process it, do it.
After things have calmed down a bit, you’re going to realize you have been completely overwhelmed with information. It’s literally the definition of data overload. Here’s the main things you want to look at: the specific mechanism of your cancer, the treatments for your specific cancer, the expected survival rate for your specific cancer (unfortunately), and the nearest place to get Frozen Yogurt. The last one is so you can have a treat while you read. Sprinkles make everything better.
How much information do we really need?
The next thing you are going to want to do after you digest some of that hard to read information is stop. I said STOP! Don’t get dragged down a wiki rabbit hole about cancer and chemo and end up at a webpage offering a tonic that cures all forms of lymphoma for just five easy installments of $19.99, because that’s where it all eventually leads. Look, folks, there is a law of diminishing returns on reading about your cancer. Once you’ve got the basics tackled, just stop. Yes, you did your part and you read up on your illness and what to expect but the truth of the matter is that beyond the salient details, there isn’t any good to come from reading about every single little possibility and crazy outcome that everyone in the world who ever had your type of cancer experienced. Trust me, the more you read the less you worry isn’t the way it works. And let’s face it, do you really need more info? Because you know, deep down, what you are going to do. If you are going to fight it, or accept it and plan things out, or simply ignore it, you know. Whatever path you are gonna choose, chances are you already know.
Well, now that we’ve gotten some of the more cerebral issues out of the way, let’s talk about some of the more practical tips. First and foremost, and this goes for any illness really, don’t be afraid to record your doctor’s consultations on your phone voice recorder. My mom, God bless her, always said, “two ears are better than one.” (Yes, I know ears come in pairs but four ears are better than two doesn’t have the same ring.) I have updated that saying to, “electric ears are better than everything.” Granted, there’s a much less chance that mine is going to catch on and get needlepoint…ed(?) onto throw pillows, but it remains true! Your phone won’t miss a word, never loses focus, and worries a whole heck of a lot less than a mom recorder.
Preparing for treatment
Next, you’re probably going to get chemo. Don’t worry – the word is scarier than the actual procedure. It’s actually a little anti-climactic. When it gets pumped into you and you don’t instantly keel over puking your guts out, it feels like you’ve been lied to by TV. The symptoms actually come on gradually over a few weeks. You’re probably going to want to watch out for mouth sores due to increased mouth fungus (they can give you anti-fungals, the pills work better than the mouthwash). Also, make sure they give you anti-nausea meds just in case. Marijuana you can decide for yourself, but for me it did more harm than good (I have RA also). Also, bring a sweatshirt to chemo, and dress in layers. Not only does your temperature change but you never know if the infusion place is going to be set to artic chill or diablo inferno. You might want to pack some snacks as well, the “sandwiches” at chemo are unfit even for captives at a hostage situation.
Look, no matter what, hearing you have cancer isn’t going to be easy or fun, but now that you know a little bit of what’s coming and what to do, hopefully it will take a little of the sting out of it. Who am I kidding, it won’t, but at least you won’t have to eat stale peanut butter and not really any jelly for lunch at chemo. Talk soon.
What blood cancer were you diagnosed with?
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