10
September
2012
Hanging out in the hospital exam room.
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I was hoping that brain surgery would teach me a thing or two. That I would wake up from my operation with some sort of hidden knowledge that’s only accessible to those who’ve had their skulls cracked open.
It’s not that I thought I’d wake up speaking French or anything (though I wouldn’t have been against that. I’ve always wanted to learn French). Rather, I imagined I’d groggily rub my eyes and look around with a new appreciation for the world around me. My new perspective would prevent me from getting upset about the small stuff.
I thought that after brain surgery, I could rise above the trivial crap we often find ourselves miring in.
And for a while, that was the case. They say that your true self comes out when you are heavily medicated, and my true self, to everyone’s surprise, was an absolute sweetheart. I loved all my nurses, even the blond that Rand had dubbed “the nasty one” (“You just don’t understand her like I do,” I said, drooling onto my gown). I declared my mother the best mother – NAY, the best HUMAN – in the entire universe. I was even tempted to call a few people that I hated and tell them how I had changed my mind about them, how I was wrong to suggest that if they were a crossword puzzle clue, they’d be “a four-letter word that starts with ‘c’ and rhymes with punt.”
Trust me, no one was more shocked than I about my new-found niceness and goodwill.
Of course, I was hepped on something ten times stronger than morphine, and I suspect that had something to do with it. For when I finally came down from that stratospheric high, many many days later, I found I was back to my old, cranky, ill-tempered self.
And for a while, I moped, because I had gone through all that brain drilling and learned positively nothing.
In hindsight, though, this isn’t entirely true. I did learn a few things. I learned what it’s like to have a brain tumor. What it’s like to get an MRI and a CT scan and what it’s like to be completely and utterly knocked out. I learned what it’s like to have staples in your head and what it’s like to have them removed.
I learned what it was like to have brain surgery.
Hell, not even my doctors, who are experts in the field, have been through that.
Here are some of the things I learned from my experience. I tried putting them in some sort of coherent order, but that kind of failed miserably, so instead, I’ve just plopped them all into one big list.
Call it a brain dump, if you will.
- Trying to diagnose yourself over the internet is a terrible idea. The world wide web, once a dear friend, purveyor of porn, and shopping buddy, will turn on you. And, as my friend Chad so brilliantly puts it, you will come away thinking that you have a life expectancy of three or four minutes.
- - Rather than asking Google all those questions rolling around in your tumor-ridden head, I found it best to write them down and direct them to your doctor. Every. Single. One. (Well, every single one that pertains to brain tumors. Don’t go asking your doctor about where you can find those naked photos of Prince Harry from Vegas. He might know, but it will just get awkward from there.) If you don’t write them down, trust me, you will forget them the second you enter the exam room, and will conveniently remember them again well after you’ve gotten home.
- - Feel free to run around the house doing your best Arnold Schwarzeneggar impersonation, saying “It is a tumor.” Trust me: it will never get old.
– - Note that the tumor is not the sole reason behind your tendency to enter a room and forget why you went in there in the first place. If that were the case, everyone on the planet would have a brain tumor. My mother would have 17 of them.
- - However, the tumor may be the reason behind your headaches, your hormone fluctuations, and why you think that Sorority Boys was a good film.
- - It’s okay to be scared out of your mind.
- - If you are claustrophobic, getting an MRI may cause you to freak out. Calm yourself with notion that the process is similar to being inside a big front-loading washing machine. Become the dirty laundry.
- - You will have to remove all metal on your body. That includes body-piercings. This means that at some point after your MRI you will find yourself staring at three metal hoop earrings, and you will not, for the life of you, be able to figure out which one was in your nose and which two go in your ears.
- - If your pants have metal on them, you will be given hospital scrubs to wear, which are comfortable, but not really designed for big-hipped gals. I give you Exhibit A:-
So Cosmo says I’m fat, but I ain’t down with that.
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- I kept asking the technician a bunch of “What ifs?” (What if he passed out, leaving me inside the machine for hours? What if the building suddenly lost power, and I was stuck inside?) After going through every unlikely scenario with me, he finally said (with a more than passing degree of exasperation) that in an emergency, I could crawl out of the machine. So remember that: if the zombie apocalypse happens while you are getting your juicy brain scanned, you can always crawl out.
- - MRIs are insanely loud. The noises fall somewhere between those of a garbage disposal, a semi-automatic machine gun, and a semi-automatic machine gun that has been put inside a garbage disposal. Fortunately, you’ll get earplugs and (if you are lucky) headphones, too. So you can listen to NPR and replace some of the dendrites and synapses that you lost to irradiating your head.
- - You will likely be quite calm for your first MRI, because you have convinced yourself that it’s just a precautionary measure to ensure that nothing is wrong. You will likely freak out for your second MRI, because clearly, something is wrong and THAT IS WHY YOU ARE GETTING A SECOND MRI. Fear not: the technicians are often quite used to hysterical crying (however, when you finally do lie down for the scan, the snot from your crying fit will clog your sinuses something fierce).
- - Once the scans start, you can’t move at all. Take care to pick any wedgies beforehand.
– - Compared to an MRI, a CT scan is like a walk in the park. A very short walk.
- - Tumors are like meth-cooking tenants in a cheap apartment complex. Even after you give them notice of eviction, they can be hard to get rid of. And they often trash the place before leaving.
- - Naming your tumor is a great way to show that you are dealing with the situation in a light-hearted manner, or may be a subtle signal to your friends that they should stop asking you when you are going to have a baby, because you have a FRIGGING BRAIN TUMOR and that is occupying most of your time right now.
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If you do chose to name your tumor, DO NOT name it after one of your in-laws. That will not come off as the heartfelt tribute you intended it to be.
- - You may be tempted to try and figure out why you presently have a brain tumor. This is a waste of time. Brain tumors can be the result of a myriad of things, so it’s nearly impossible to pinpoint one cause.
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Unless, say, you spent your childhood sticking your head inside the microwave and turning it on. Because that’s probably why you have a brain tumor.
- - There is no shame in eating an entire dish of brownies or half a dozen cupcakes in the span of six hours. If anyone questions your behavior, explain that you are eating for two.
A small sampling of some of the several dozen cupcakes I was sent.
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- Suddenly, Rihanna’s half-shaved haircut will seem completely reasonable.
- - The upside of this experience is that you now have a great excuse for forgetting people’s names. Behold:
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“I’m sorry, I just had brain surgery. What should I call you?”
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“Mom. You should call me mom.”
- - A bit of life-long retrospection is normal. If you look back upon things, and your biggest regret is that you should have spent less time working out and more time eating cake, then you can’t really complain. If the only mistakes you’ve made involve seeing too many Ben Affleck movies while they were still in the theater, then consider yours a life well lived.
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Even though you’re pretty convinced that you still deserve a refund for Daredevil.
- - Yelling at those close to you is a completely normal and shitty consequence of being scared.-
Sorry about that, baby.
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- Screaming at the TV or internet is perfectly acceptable, too.
- - While one would hope that learning of a potentially cancerous legion on their brain might make them gain perspective, sadly, often times, the opposite is true. Rather than worry about the bigger issues before you, it is easier to focus on the fact that your tailor totally botched the alterations of your dress.
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Of course, part of the reason you’re so pissed about the dress is that if someone can screw up fabric, just imagine what they can do to your head.
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Then remember that your doctor’s machinery will be slightly more advanced than a Singer sewing machine.
- - In my experience, most neurosurgeons do not get sarcasm. If you openly ask them what are the odds that your tumor is a rogue Lego that you shoved up your nose at the age of 3, they will likely explain to you in detail the high improbability of that.
Warning: Do NOT insert in nose.
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They do, however, get a kick out of hearing you say, “Just take a little off the top,” when you are about to go in for surgery.
- - Odds are, you will not be able to take your tumor home to have it bronzed, because for some reason your doctors say they need it.
- - The following are unacceptable nicknames for your neurosurgeon: Buddy. Champ. Bubba. The Slicer. The Dicer. Iron Mike Slice-on. The Widow-Maker. Extreme Barber.
- - Have someone you trust speak with your neurosurgeon. They should ask a long series of questions, and investigate your doctor thoroughly before your surgery. This is to ensure that your surgeon is not, in fact, a zombie, and this entire operation isn’t a ruse to get to your delicious, delicious brain.
- - Upon revealing that you have a tumor to friends and family, you may find that they react in different ways. Some may express their sadness at learning that you are not the prime physical specimen they always believed you to be. Others may openly show signs of guilt, because honestly, they never expected that Voo Doo doll to work.
- - You may notice that friends will start to look at you differently. For example, they may stare at you intently for minutes at a time, or peer into your face, seemingly in search of something.
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Fear not: they are probably just concerned about you and are looking for any tangible signs of illness. Either that, or they are trying to figure out by your facial expressions which of your things you will bequeath to them in a will if things go badly.
- - Understand that your medical condition provides a rare opportunity to serve as a life-lesson for others. Be sure to offer your services to friends or relatives with small children. If the child has a nasty habit, this is a great way of getting them to kick it.
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“Why do I have a brain tumor? Because I picked my nose too much when I was little. You don’t pick your nose, do you, Jimmy? Because that’s basically like ASKING for a brain tumor.”
- - The look on your loved ones’ faces after you tell them about your tumor will remain etched in your mind and heart until probably the day you die. Considering that, it is probably best to tell your parents what’s going on over the phone.
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Do not lead with “I have a brain tumor.” That sort of tends to freak people out.
- - You may have a parent who is not inclined to voicing his or her affection towards you. After a phone call with said parent, you may tell them that you love them, and they will reply with, “Yeah.”
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This will be weirdly comforting, because if they had said, “I love you, too,” then you’d really start to worry.
- - You’ll be amazed by how many people you know have gone through the same thing. There’s nothing more calming than having a friend say, “Your tumor is only a centimeter long? Pssh. Mine was the size of a golf ball.”
- - You may find that your husband has taken to wandering around the house, playing the ukelele, and singing some of your favorite songs, as a means of coping with the stress of this situation. It is best not to look directly at him when he does this, or there is a good chance that your heart might explode.
- - Nor should you think about the way his eyes twinkle in the light of day (again, because of risk of heart explosion).
And holy crap, do they twinkle.
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- It’s entirely okay to spend the night before your surgery catching up on Mad Men. Be warned, though, that you might wake up demanding Pete Campbell’s testicles on a plate.
- - The idea of having your head cut open is much more acceptable when you learn that the only other option is to literally pop your eye out and go in through your ocular cavity. (Which I still SWEAR must have been a joke. Right?)
- - Proper trousers are for those with intact brains. You may feel free to wear pajamas all day for at least a week or three.
- - Before surgery, make sure to clean your house and pay your bills, because the only thing you’ll want to do after surgery is sleep and eat pudding. Sadly, after extensive research, I can definitively say that sleeping and eating pudding will not result in a clean house or paid bills.
- - The last part of your body to wake up from anesthesia is your lower intestine. (Translation: You will not be able to poo for days and days. Do you hear me? DAYS AND DAYS.)
- - Good friends will listen to your post-surgery constipation stories. Great friends will high-five you when you tell them that you are actually able to poo again.
- - Fruit bouquets are pretty much the best thing you can send anyone recovering from anything.
- - Drink plenty of water the day before your surgery, since you won’t be able to have any the morning of (and you’ll be so dehydrated, the nurse will have to rub your vein in order to get blood drawn, which is all kinds of unpleasant).
- - Have a clever one liner prepared for when you come to. Since I had a bunch of metal in my head, I decided to go the Terminator route, and held a photo of Edward Furlong circa the mid-nineties, asking my husband if he had seen this boy, John Connor.
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He didn’t get the joke. Once-in-a-lifetime set up AND HE DIDN’T. GET. THE. JOKE.
- - Occasionally, surgeons will forgo putting a metal plate in your head and just rely on the bone to fuse on its own (or for scar tissue to develop and protect the hole in your skull). This means that you will be running around with a soft spot in your head for several months. Make friends with babies. They understand how fragile you feel.
At least you aren’t a jellyfish; their whole bodies are soft spots.
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- If the surgeons skip the metal plate, they will leave a drainage tube inside your head for a little while after surgery. Depending on where your tumor was, it may extend incredibly deep into your brain. Removing it is akin to picking the biggest wedgie ever. It will be glorious.
- - Also, the removal of the drainage tube will be gross and horrifying to all spectators. Even those who gave birth to you, and who have presumably seen a lot of disgusting things come out of your body.
- - Worse still will be when they staple shut the hole the drainage tube left in your head. I’m not gonna lie: that will hurt like hell.
- - Realize that this experience will make you an unmitigated bad ass. Feel free to bring it up constantly, even when it doesn’t pertain to the conversation at all.
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“Congratulations on your promotion! Did I mention that I had brain surgery? Because I did. Me. Me. Me.”
- - The total bill for my surgery was around $57,000. We paid about $2,000 out of pocket. Health insurance is a godsend. I wish everyone had it.
20 minutes in this room was pricier than any hotel I’ve ever been to.
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- Sometimes going for a short walk can feel like a huge achievement unto itself.
- - Ditto for eating four desserts in one day.
- - For the first time since 1985, you will find yourself needing your mom’s help to get into the bathtub. And to wash your hair. And to get out of the bathtub. And to dry your hair. That’s okay. That’s what moms are for.
- - Your surgeon will put a grease in your hair in order to part and hold it in place prior to the surgery. It will take several long washes before it comes out. On the plus side, it smells pretty good.
- - Depending on your surgery, it will take you any where from several days to several weeks before you start feeling even remotely like yourself. Use this downtime wisely. Take up a new hobby (like seeing if the staples in your head are magnetic) or take some time to appreciate the artistic menagerie that is daytime television.
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(Don’t be too hard on yourself if you can’t follow the plot. It’s mostly the copious amount of drugs in your system, and not a sign of cognitive damage.)
- - Despite your proclamations that your bladder is as dry as the Sahara, you will probably have to get a catheter put in for your surgery. You probably won’t remember it being inserted or removed. But afterwards, your bladder will spasm like hell and you’ll have to pee every five minutes.
- - Having your staples removed doesn’t actually hurt at all. But you can pretend that it does if you need extra sympathy points. Just be sure to get the physician’s assistant to play along.
- - Unless it says, “take as needed,” your medication is not optional. Your whines about the horse pills you have to swallow will be largely ignored by your caretakers and husband.
- - Being on the sidelines is scarier than being in the operating room.
- - Contrary to what movies, TV, and The Simpsons have taught us, you don’t magically “wake up” from surgery the way you would a nap. You don’t really remember coming to. Instead, you’ll be in haze of drugs and anesthesia for several days.
- - During that time, you will say many embarrassing and inappropriate things. Pray no one has a video camera.
- - Even under sedation, The Muppets Take Manhattan is entertaining.
- - Steroids stop your brain from swelling. They are crucial and life-saving in this respect. They will also turn you into a moon-faced teenager. Expect to have mood swings, eat everything in sight, and break out unceremonially.
- - Random bald spots or facial and neck bruises (from where they clamped down your head) are completely normal. If anyone asks about them, explain that you tried making out with a badger.
- - When people offer to help, they aren’t just being polite. They want to help. That’s why they offered.
- - You may not remember very much of what happened during the days and week after the surgery. Try not to write any ill-advised screenplays.
- - No one is actually expecting thank you notes, but it’s a nice gesture if you send them, anyway. Bonus points if you write the note from the perspective of your tumor.
- - For the love of all that is holy, go easy on yourself. (I went running three weeks after my surgery. That was stupid. Running when you are healthy is bad idea. Heck, running at any time when you aren’t being actively chased is a BAD IDEA.)
- - Don’t pick at it.
So that’s it. Everything I learned from brain surgery. Well, mostly everything. There’s one last point that I’ve kept off of here, because it seems strange to put it alongside all those other reasons. But it’s something that hit me, time and time again during surgery.
It’s this: we are, every single one of us, loved.
I’m sorry if that sounds earnest and treacly, but it’s true. Every single one of us, regardless of whether or not we think we deserve it, is loved, far more than we realize. By our family. By our friends. By dark-haired, twinkly-eyed boys in plaid shirts.
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The thing is, even before brain surgery, I kind of suspected that to be true.
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I suppose you want to know what all this nonsense is about. You’ve come to the right page...
Everywhereist on flickr
I can empathise with the post op bowel movement story. When they asked me ‘have you had a movement’ after a cesarean, instead of saying- “Sheesh, NO ok?” I should have said (and will if ever in the same position). “Not yet, do you have hardcore drugs for that because I understand that it could become problematic?” Ahh, 20/20 vision. Shudder.
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Heh. I shouldn’t have read this today.
Apparently my blood work shows that there is a possibility of a “growth” on my pituitary gland. My MRI is tomorrow afternoon.
I’m a little scared.
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Everywhereist Reply:
September 11th, 2012 at 10:10 am
Lisa! I’m so sorry to hear this. On the plus side, pituitary tumors are very, very common and treatable. Plus, the MRI tech will give you a little buzzer you can squeeze if you want to be taken out of the machine. You will do great!
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Even without any context whatsoever, this single line is brilliantly funny: “Sadly, after extensive research, I can definitively say that sleeping and eating pudding will not result in a clean house or paid bills.”
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I Loved This! Thankyou!
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I hope if I ever am found in a situation like this, I can find the grace and honesty to handle it like you did. Also, I hope my loved ones have the forethought to send me cupcakes and fruit bouquets should I ever have surgery.
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You are so incredibly brave. I have a friend who is dealing with the same thing, I just referred her to your blog. I think it will bring her some comfort.
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Everywhereist Reply:
September 11th, 2012 at 9:05 am
Oh, good heavens, bravery has nothing to do with it. Trust me.
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The first poop after surgery was scarier to me than the surgery itself.
I am still amused that there were many pictures of me posted on Facebook in my hospital gown, that I have no recollection of people taking. There were people that were there that I don’t even remember being there.
And the MRI machine is not my friend. I had to do several and every time I wanted to squeeze that little ball for them to get me out. I didn’t, but it was really hard not to.
I’m glad things are going well for you now. I loved this list.
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Suzanne Reply:
March 23rd, 2013 at 11:13 pm
That first poop was the worst thing I ever went through in my life ( well, after the actual craniotomy itself ) . You cannot do anything but sit calmly and pray for something to ” happen” as you can not strain yourself at all. I felt like my head would explode.
Humorous to recall now, but awful then……..:-)
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#44 and #47 – AHHH!
Your website came in handy two weeks ago when a friend of the family found a cyst/tumor and had to have brain surgery. He appreciated your blog
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I’ve had 2 MRIs and a CT scan. You are right…CT scan feels like a walk in the park now. On my last MRI, I thought I was going to puke from the dye. Thankfully I did not, or I would’ve had to start the whole damn half hour ordeal again.
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“It’s this: we are, every single one of us, loved.
I’m sorry if that sounds earnest and treacly, but it’s true. Every single one of us, regardless of whether or not we think we deserve it, is loved, far more than we realize. ” – <3 -ed it !
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You are inspiring. Because while I’ve been going through my own mini-hell, I’ve been telling myself, “Well, at least I don’t have a brain tumor!” Instead, I’ve got a broken fibula and anywhere from 2 – 8 weeks of bed rest.
You rock. Really. Thank you for being brutally honest through the journey.
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Powerful and courageous. Thanks for sharing your story!
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From one brain tumor survivor to another, you “nailed” it!
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Everywhereist Reply:
September 11th, 2012 at 10:08 am
Yay! Glad you liked it.
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Ellen Reply:
September 28th, 2012 at 7:54 pm
I second that!
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Nic Reply:
January 6th, 2013 at 7:34 pm
I’m 13 and I 3rd that!!
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This list is pretty spot on! I will add a 3rd option for the skull repairing, beyond a metal plate or an open hole. They might pop the CD-sized piece of skull they removed back onto your head and screw it on tight with little titanium screws. It’s like permanent bling (that, sadly, no one can see and enjoy)!
And as far as the change in perspective? Give it time. I wondered too, and it took at least a good 6 months to notice the differences in how I felt and saw things. So you may still be surprised…!
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Everywhereist Reply:
September 11th, 2012 at 10:08 am
A friend of mine actually had this done – his skull is screwed together. He’s screwy.
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Kim Reply:
September 12th, 2012 at 5:44 pm
That is how mine was done… head X-Rays after look really interesting. The little postage stamp areas where the screws placed look like a kid’s drawing of flower petals.
I’m a little screwy too! I’m sure that it’s an interesting feeling for any of the massage therapists who have worked on me. There are still some soft spots 8 years later.
One more thing I learned… it really is okay to shave your head if you want, or at least get a really short hair cut. Dealing with my hair drama was more traumatizing at times than the surgery itself.
Thank you for sharing this!
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I love your writing and your humor! Thanks for sharing this.
I do not have a brain tumor, but I have a cholesteatoma in my ear…I had my first head CT and MRI last month and had ear surgery shortly afterward. I will have to have a craniotomy in the next month or two because the bone between my ear and brain has been eaten away, followed by another ear surgery. So I can relate to some of this, even though the tumor was in my ear rather than my brain.
Thank you!
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Ah, the ukelule one was the best. I can understand the risk of heart explosion.
As always, your writing is heartfelt, hilarious, and awesome. You haven’t lost it.
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I share your disappointment about your surgeon not getting the Lego joke.
If it’s any consolation the surgeon who did my lumpectomy a few years ago (which was somewhere much *ahem* lower) didn’t bat an eyelid at my joke when they were getting ready to inject the local anaesthetic. The anaesthetist however nearly wet herself when I said, “Just a little prick?”
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I love how two people, separated by thousands of miles with only brain surgery in common have the exact same experience. (Though, I ate Dilly Bars instead of pudding.)
Who would have thought staples are the worst part about the surgery?
And I still laugh about telling my mother that I’d sell my soul for some chicken soup.
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Just so you know, having been through many, many surgeries and MRIs and as someone with a rare disease that precludes me taking those wonder drugs (opiates like morphine, Demerol, Percoset, etc) that most of you are using when you wake up… it’s the drugs that cause the constipation. Yes, an operation will make you constipated, but only until you’re up and around in the next couple days. It’s the opiates that cause the 5-day, holy heck, what is wrong with my colon? constipation.
That said, when you consider that I must do all my recoveries with just ibuprofen (mind you, it’s industrial strength, but still) because in 100 years we really haven’t come up with anything better than opiates for pain, you might be glad of the constipation. I have done a c-section recovery, sinus surgery recovery and a hysterectomy recovery all on ibuprofen, as well as the most painful thing I’ve ever had, which was a virus that mimicked meningitis. So not being able to go may not be the worst thing ever. Though since I have tried Demerol and know exactly what that constipation feels like, I’m tempted to claim it’s a toss up.
And your list, and writing, were as wonderful as always. Glad you’re well again!
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Everywhereist Reply:
September 11th, 2012 at 3:56 pm
Jess – you are amazing! So sorry to hear you can’t take opiates. But glad you are tough enough to handle it without them. Damn.
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Jess Reply:
September 11th, 2012 at 3:59 pm
My disease also gives me a much, much higher pain tolerance than most people, so it sort of evens out, in the end! Since it messes with my nerves, they don’t handle pain the same way everyone else’s do. No additional toughness required.
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Ohhhhhh my gosh! This is the funniest thing I’ve ever read! And totally spot on.
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Any descriptions of medical procedures make me *severely* squeamish- MRIs, staples etc. But I couldn’t stop reading this, as many of these points had me laughing out loud.
This piece is also a sweet reminder of how important love and humor are in getting us through the worst of times.
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I just have to say how much I enjoy reading your blog. Pretty sure I forward each post to at least one friend. Keep making people smile!
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From one brain tumor survivor to another, this post was awesome! So many giggles reading this! I nicknamed my surgeon the Tumornator so I fully appreciate your terminator jokes even if your husband didn’t. If you’re going to have a brain tumor you might as well be able to have some humor about in between the moments of pure fear. Wishing nothing but clean MRI’s for your brain’s future so you can’t start running around saying “it’s not a tumor!”
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Everywhereist Reply:
September 11th, 2012 at 3:55 pm
THE TUMORNATOR?
That is so awesome. I’m jealous I didn’t think of it.
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Todd Reply:
April 12th, 2013 at 1:43 pm
Completely agree. Tumonator is one awesome name! Wish I had thought of it as well. I’m going to blame Jeoffrey for him getting his GOT inspired name.
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number 65 is my favorite. Glad you are well.
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#72: Recovery is not linear. There will be good days and bad days. Good hours and bad hours. If you don’t “get” this, you can become very depressed. Actually, you can become very depressed anyway—which, as you point out, is where the cupcakes come in.
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G you are one hell of a woman who can take this subject, look it in the eye, and laughingly say “Fuck you”. Entertaining yes, but for future subject matter may I suggest a safer, less evasive subject like knitting or boche ball?
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“You may have a parent who is not inclined to voicing his or her affection towards you. After a phone call with said parent, you may tell them that you love them, and they will reply with, “Yeah.”
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This will be weirdly comforting, because if they had said, “I love you, too,” then you’d really start to worry.”
While not even close to having a brain tumor- I felt the same way once when after a really bad decision to have a perm, my dad, said “ it doesn’t look too bad” whereas before the perm, my dad would not have commented on my hair if it was on fire. Not comforting at all, Dad!
And never forget that you are the reason that Rand has that twinkle in his eye.
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YESSS to ALL THE THINGS. But, especially YES to numbers 1, 2, and 71. They literally have to teach medical students how to deal with patients who self-diagnose on the internet (no really, they do, I experienced it). In addition to scaring yourself silly, you are sidetracking the professional brain miner, and that is not the person you want to sidetrack! Two is always lovely, really and truly. And 71? Well, that’s the SparkNotes of life. Thanks for giving realistic insight
All that medical television is really setting back accurate public knowledge.
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I’ve been lucky and have never had a serious injury/illness or have had to stay in the hospital (knock on wood). But if I ever did I would just read this post and it would make me smile and feel okay. Thanks for that.
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If this story is true than i salute you ma’am you gave some reason to live with joy. You are brave woman but i think behind this Rand playing a big role to motivate you.
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On a scale from 1-10, how bad is it that you kept me laughing all the way through this? I’m thinking 11.
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Aaron Friedman Reply:
September 11th, 2012 at 3:38 pm
To add to that, don’t read this post on a train or in other quiet places around people…. you will get looks
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When I shared your latest post I told my friends that sometimes a travel blog can take you places you don’t ever want to go but you’re sure glad you got to share the experience.
Glad to hear that you’re back on your feet, even if you’re not running.
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I’d say that twinkly eyed boy in plaid is pretty darn lucky.
Favoriting this article, just in case I need a reference guide.
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Amazing. Really, truly amazing. So good to see how strong you guys are together.
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Great summary of what you went through – you made a serious subject super funny. 28 made me laugh out loud (at work…oops). 38 was a very gross mental picture – thanks for that.
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I’ve never had brain surgery (although a surprising number of people have mentioned that it might be advisable – I think my Dad was the first), but should the need ever arise, I’ll be better prepared. Not just for the process and side-effects, either – better prepared to handle a scary situation with a sense of humor. You do, indeed, rock, lady!
I can’t believe Rand didn’t get your Terminator gag!
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Rand is 110% right, you have an amazing sense of humour…
“Random bald spots or facial and neck bruises (from where they clamped down your head) are completely normal. If anyone asks about them, explain that you tried making out with a badger.”
I hope ALL people faced with the prospect of brain surgery get to read this, as it demonstrates that a positive attitude and a sense of humour is more powerful than any medication
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I read this from the perspective of a parent; our (now 8 & Cancer-Free) 5-yr-old son had Medulloblastoma. So many complications have left him disabled and even though he can’t speak he liked the Poop one; it’s a boy thing! During one drain tube removal & a placement of a new one (in the PICU) I explained to his Neurosurgeon he was no longer allowed to be his barber (27)! Tumors SUCK, but Laughter is the best medicine! Thanks for the laughs; us parents need medicine too; preferably during MRI’s (which he’s sedated for; so there’s no crawling in an outage, just snoring)!!
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Everywhereist Reply:
September 11th, 2012 at 10:28 pm
I am thrilled to hear that your son is cancer free. Despite the fact that he is not being able to speak, it sounds like you guys communicate with one another well! He’s lucky to have you!
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Definitely laughed out loud a few times. Especially at picking wedgies before an MRI, sticking your head in the microwave as a kid, and shoving a Lego up your nose (and the detail the doctors will go into to debunk that myth.) Hahaha!
Otherwise, I am glad to hear you are still on the road to recovery – and good thoughts are still being sent your way.
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71. You no longer need a weather forecast. If it’s going to rain, your brand-new built-in baramoter will tell you.
(I got a plastic plug.)
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Everywhereist Reply:
September 11th, 2012 at 10:27 pm
I just have a good old fashioned hole in my head. But when I get cold, the shivers seem to crawl up my head and go straight for the hole. It’s the weirdest feeling ever.
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Having suffered a stroke recently, your story was a most welcome and excellent read for me. Thank you very much for sharing it. Best line and so true: #25. “In my experience, most neurosurgeons do not get sarcasm.”
I once pretended I couldn’t respond to them and started flapping my arms like a bird. They saw no humor in it whatsoever and wrote something down on my chart. *Note to self: Find chart.
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Everywhereist Reply:
September 11th, 2012 at 10:26 pm
Okay, I just audibly snorted at this comment, Joe. “Find chart.” Bwah ha ha ha ha ha.
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Reading this made a (purportedly) grown man tear up. Are you happy now, tumor-girl? ARE YOU?
#71: Many people are completely clueless about how to react in this kind of situation and as such fail miserably at it.
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Everywhereist Reply:
September 11th, 2012 at 10:26 pm
Please promise me that the nickname “tumor-girl” will stick.
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Sigh.
I’m so glad I found your blog. Who doesn’t want to read about women who are totally in love with their husbands? And women who can make light of super serious, scary things?
Thanks for sharing your journey with us
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Brilliant.
And how incredible that you are so soon writing a retrospective piece about this experience. It must be amazing to think that you got through the toughest moments and out the other side in a single summer.
Can’t say ‘good times’, but relatively speaking it’s not far off.
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My sister insisted the nursing staff were horrible and smoked, drank and danced all night in the ICU ward, she also continually begged us to get her the pack of cigarettes she’d hid in the ward toilets, despite our frequent, patient attempts to assure her that she’d stopped smoking years before. It was only much later we discovered that she’d been a secret smoker for some time – I still feel her frustration.
The upshot of her encounter with brain surgery is that we are much closer and she is a much nicer person now – and maybe I am, at times.
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i love your humour and approach to this, definitely laughed a few times – great way to look at life, always ‘find the happy’
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you are so freakin funny i have to stop reading your posts at work because my colleagues think i’m demented. so glad you made it through.and thanks for all the laughs!
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Hey there, I was also diagnosed with a brain tumor last year. I was lucky enough to have only a GammaKnife surgery, they screw something on your skull for the day instead of opening up your skull.. i guess that is lucky in some ways
When Rand posted something about Brain Tumor, I felt concerned. SEO + Brain tumor = me
That did’nt stop me from starting my own business a couple of month ago. Lotus Marketing.
Cheers, great post. Wish you best luck.
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This is a great blog. Too funny! I am due for my brain surgery November 14 and told my husband “I wish I didn’t have to go back to get the staples out afterwards”. He looked at me like I was an alien and said “You are getting your skull cut open and you are worried about the staples!”. Lol, I guess if I just think about the staple I don’t have to think about what caused them. : )
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I applaud your positive outlook. I had a burst brain aneurysm which resulted in 3 brain surgeries and 38 days in ICU. I was just standing on my deck watching my kids swim when suddenly it felt like I had been stabbed with an ice pick right above my ear, and I went to one knee. I guess what I would like to understand is how do you stay motivated? It’s difficult to talk about with anyone because brain surgery isn’t your run of the mill surgeries. I had found a Traumatic Brain Injury group, but they were so depressing. Does blogging help you? I am grateful I found your blog.
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Love this list! Especially #25. Lego, snort, snort. You are right they do not get sacasm, neither do nero-oncologist. But, laughter is the best medicine. My husband and I also liked to say “it’s not brain surgery, oh wait, it is”.
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I love your outlook and positive spin on a situation many dispair in. After my MRI & CT scans I had to wait almost ten days for results…that’s the good old British healthcare system at work. The things I decided were wrong with me during that period varied from scary to downright ridiculous, and whilst I was lucky enough not to have a tumour I did find out I had brain damage which needs to be managed to ensure it doesn’t get worse.
Reading things like this and finding out that other people can handle situations far worse than mine gives me the strength and encouragement to not let things get on top of me, so thanks…and feel better soon!
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Loved it. I had surgery 4 months ago and this was spot on! Right before my surgery my husband found the purple pens they use to mark on you to know where to cut. We were cracking up thinking he could add some extra marks so I could get a face lift too. But then we figured the NS would not appreciate our humor!!! Thanks for making me laugh!
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Hi,
).
I just want to thank you, for sharing your experience. I have a (very loved) brother with a brain tumor. A bad one. He’s 37 years old. It has been a hard time for all of us, that love him, to live through it . Sometimes I just wonder what does he feel about all that he’s living (he doesn’t share with me, his little sister). It is good to read your blog, and understand a little bit about the feelings that someone with a tumor, may have. Even knowing that people are very different. I hope you get well, soon!!
Thank you for sharing.
( And sorry for my english, I’m brazilian, so english it’s not my thing…
Thanks!!
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I had a craniotomy 3 weeks ago to remove a meningioma and reading this was totally what I needed today. So many of these I love and I’m getting ready to write thank you notes and may just write them from the perspective of the tumor. Thanks for sharing this.
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Everywhereist Reply:
September 12th, 2012 at 10:55 pm
Hi, Julie! Holy cats – 3 weeks ago? I hope you are feeling better. 3-4 weeks was a big turnaround for me. I really started feeling better after that. I hope it proves the same for you!
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Julie Reply:
September 13th, 2012 at 6:33 am
Things are definitely getting better… I started work back this week which feels a little soon, but I’m still sneaking afternoon naps. I can’t believe you went running at 3 weeks. I chased some dogs out of my yard a few mornings ago and thought my head was going to explode.
Anyway, this post was great. My husband and I were laughing about the drainage line. I was all morphined up so I never really understood what was happening until it was out but he was on the verge of puking every time they emptied it. Fun stuff.
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I forgot to tell you on Twitter that I had named mine “Chuck”. As in “Chuck needs to get the F*CK out!” – granted. I don’t drop of the F bomb like I used to … but I named it Chuck in honor of just that phrase.
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Absolutely *love* this post. And even tho we’ve never met, absolutely *love* you too, Geraldine. You are one incredible woman with an even more incredible talent for writing. Next time you swing thru Vegas, can we meet for some Lotus of Siam? I’ll treat. And I’ll bring cupcakes for dessert!
Also, because I am a raving nerd, I have to point out a minor detail in #11. I’ve had a few MRI’s in my lifetime (my spine, not my brain) and everything you said was absolutely correct (tho when I had my first one at the age of 12 in 1991, I was never offered ear plugs or headphones or anything of the sort; i just got a “yeah, it’s loud, deal with it, kid.”)… except for the part where you jokingly referred to having your head irradiated. Although there is, very technically speaking, some radiation created during the procedure it’s actually of the non-ionizing variety. Which means that you aren’t actually having anything irradiated, in the most common way that people understand that. MRi’s use electrical current, radio waves, and magnets to produce their images. CT scans and X rays, on the other hand, irradiate people.
Anywhoodle, I feel better now. So glad you do too! And thank you so much for sharing your life with us, we are better people just for knowing you. <3
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Everywhereist Reply:
September 12th, 2012 at 10:54 pm
You are totally right, Christine! I actually considered changing it, but then someone let me know that CT scans provide radiation, so I figured I’d leave it as it was, and just pretend I was referring to those type of scans and not MRIs.
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Number 27 made me laugh out loud ‘the widow maker!’
Another great blog, incredibly honest & very funny as always. I think you should write a book, you’re a naturally gifted writer, I’d buy it… you could call it tumor girl, or possibly not. Anyway I think you’re great, thank you, as a constant headache sufferer I may need this list one day.
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Loved it Geraldine. Been there myself . Had a meningioms removed almost 3 years ago. Its a hard road to walk and life changes but things do get better . Its great when you can see the humour in some of the situations that do happen. I did come round straight away and chat with the theatre staff, after surgery just like the simpsons…LOL… Best wishes for the future x
ps..you dont have a big bottom even in scrubs……
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Great job.
My scoopyotomy was uncannilly like yours. I didn’t even realise I had a pipe coming out of my head until the big nurse lady with muscles pulled it out. If I’d known it was there I’d have had a photo taken.
The worst part for me was having the catheter removed – don’t know if that’s because I’m a feeble male. Even though I was drugged up I managed to hop around the room holding on to my pee pee squealing like a piglet(!)
Good luck for the future.
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Katamal Reply:
September 13th, 2012 at 10:00 pm
“Scoopyotomy”? For real? Is that really a medical term … love it!!!
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AJ Reply:
September 14th, 2012 at 3:28 pm
No, not really. I just like to imagine that they went in with a little spoon, just as if they were scooping out a boiled egg or something…
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Thanks for this! I really needed a great laugh today
Love your outlook on life!!
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Girl, You’ve got it going on! Loved reading your point of view before and after surgery. Humor is just the only way to make it all okay sometimes. Welcome to the world of post-brain surgery. If you had a meningioma be sure and join meningiomamommas.org either the website or on FB. We’re a huge, inclusive club who loves our meningioma mommas and poppas.
Best wishes
Melissa Dotson
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No fair. I just went through lymphoma and I never saw a single box of cupcakes! (Of course, maybe that only comes with surgery. I’ll go back and check the rule book.)
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Thank you for sharing. This made my day.
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It’s been two and a half years since I had my meningioma removed and as I was reading I laughed and empathized with you. I especially loved 34…my tumor was the size of a baseball and 49…the PA pulled the drains out, stapled my head and then told the nurse to give me a shot of strong pain medication. The next time he was going to take out my drains, I asked him before he started how he would like it to have someone put staples in his head and then order pain medication. He thought about it for a minute and had the nurse give me the shot beforehand.
It was like DUH?!
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Everywhereist Reply:
September 18th, 2012 at 4:06 pm
Ha! Love that you had to point out the obvious to him.
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I laughed out loud as I read this! I haven’t been through brain surgery yet, but with Itsy, Bitsy and Ditsy having taken up residence it’s just a question of time before they have to be forcibly evicted. I’m bookmarking this post – I know I’m going to want to re-read it!
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Geraldine, you are funny, courageous and a sweet heart. I read your blog voraciously. I love LOVE your writing style (you must get tired of hearing that
) – and I am so happy that you are doing better and hope that you are by now fully healed from your surgery. Sending you much much love, and thank you for sharing your unique stories!
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All the things learned from the moment the doctor tells you your 3 yr old daughter has an inoperable brain tumor.. also feels like my husband and I were diagnosed with her tumor. Might be worst.. because its not even us and we really can’t do anything about it.
If brain surgery is an option, then is a blessing and I guess more hope.. So it’s good to qualify for a brain surgery and have a neurosurgeon.. even though his first major was english, not really what we expected but turned out to be a top notch neurosurgeon.. Thanks Dr. Boop..
After 70 + lessons learned from brain tumors and MRI.. the number keep rising after all the MRI needed every 3 months, and so we do all those procedures x 4 times a year.. But yet is far better than not having the option to do them. If we have to go through MRIs and regular check ups and come out good and with hope for the next round, then we’re blessed!
Best of luck on this journey!
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Everywhereist Reply:
September 18th, 2012 at 4:05 pm
Thanks so much, Paola! I am wishing you and your family the best. Give your little girl a hug for me!
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Great list – had me in stitches (of laughter obviously). I survived cancer from 12 years ago, and it brought back a lot of memories…aaahhh…morphine kicking in….
Maybe it depends on the type of CT scan you have and the stuff you have to drink for my type of CT scans, but I have to disagree with #14. I’ve had both MRIs and CTs and used to crack the joke with my nurses:
Q:Whats the difference between cancer diagnosis & the CT scans?
A: After cancer diagnosis you think the bottom has fallen out of your world; after the CT scan, you think….fill in the rest
Take care and all the best for the future
S
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unfortunately I recognize that shot of the Columbia neuro ward all too well….
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#2 on your list made me sad. It’s pure propaganda.
Yes, some doctors are FANTASTIC. Two doctors helped my two toddlers out when they had crupie cough.
But most doctors are scary bad. And yes, this is very surprising to me.
My wife’s best friend is a PA (physician’s assistant). You should hear the stories she tells behind the scenes. It’s not good. Not good at all for patients that is.
The main doctor (that she works for) was flown out to Boston to see a Red Sox game last night… stayed in a fancy hotel and then flown back the next day – all expenses paid. Sick (pun intended). This goes on ALL of the time.
Every single prescription results in a cash rebate to doctors. No exception.
Even schools get bribes. The Department of Human and Health Services sends a $100.00 payment to our child’s school each year for each student who has taken all vaccines…
… But it gets worse – the same DHHS sends $1,000.00 a year if the child is taking Ritalin!
This is beyond sick (again, pun intended).
And the facts and statistics seem to prove the hell these big pharma salespeople (er, I mean doctors) put the masses thru:
Dr. Barbara Starfield of the Johns Hopkins School of Hygiene and Public Health once published a study claiming at least 225,000 deaths per year are directly related to iatrogenic causes…
… In simple speak, that’s 225,000 deaths per year due to doctor’s mistakes.
This study hardly sees the light of day because the media is in cahoots with the AMA.
I tried (and failed) to email Rand about this. Our back and forth email ceased as soon as I told him how I cured my own bout with cancer with Apple Cider Vinegar and baking soda.
I never understand why people rush to dangerous doctors before they try stuff that nature provides us. Boggles my mind in fact.
Yes, the Internet gives off lousy advice (when you don’t know how to exploit it). But the stats show taking doctor’s advice can be much worse – deadly even.
I hope this comment doesn’t get deleted.
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“They say that your true self comes out when you are heavily medicated, and my true self, to everyone’s surprise, was an absolute sweetheart.”
Reminds me of when my wife was in surgery (uterus and bladder) a couple of years ago. Everyone that came into contact with her at the hospital – doctors, nurses, janitors – went on and on about what a darling, sweet woman she was through the whole process. And yes, I high-fived her when she pooped like a good husband/best friend should. lol
Love the post – very genuine and witty (I’m not witty enough to think of a less condescending-sounding word than “witty”) and had me laughing. Here’s to your continued good health!
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Love the way you write. Godspeed to recovery.
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Thank you for this post! Your story gave me a laugh, because unfortunately I share a similar one. Its very important to laugh about our experiences because they suck and are scary and no one(very few) understand what its like. This last weekend i went on a Rafting/Kayaking trip with First Descents. It was so fun being around others who have similar fights with cancer. But to cool thing was we hardly talked about our cancer because we didn’t have to. We all understood and we just joked and laughed and laughed. I would laugh so hard that no sound would come out. Have you heard of FD?
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Had a meningioma removed about two months ago and laughed out loud when I read this post! I can concur with so much of it –particularly #’s 11 (hmmm, earplugs inconsistently offered, note to self – always bring your own) , 14, 22 (brilliant thought – give earplugs to your significant other), 41 (’nuff said) ,43 (oh so very true), 46 (yep I have a hole and I think I can feel it),50 (my husband keeps telling me to stop showing my scar to everybody; I am not listening – it’s proof!) ,51 (my first hospital stay with the surgery was $99,000 including the ED/diagnosis part and we’ll pay $2,500), 54 (substitute husband for Mom), 55 (and it’s disgusting and mine didn’t smell good and took four days to get out of my hair completely, baby shampoo just didn’t’ have what it takes), 60, 64 (and rant at your sweet husband for the most ridiculous things, sleep only two hours per night, and behave like what must closely mimic a crack addict during the withdrawal period).
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I love no. 26: “Odds are, you will not be able to take your tumor home to have it bronzed, because for some reason your doctors say they need it.”
I’m so glad I’m not the only one who asked for their bits! I had my colon out and they wouldn’t let me keep it either because they had to biopsy it. I was…mostly…joking, but I could see it in a large formaldehyde jar. My husband was horrified.
Of course, my doctor, after he realized I was joking, said that he had all of his patient’s colons on his mantlepiece as trophies. I love my doctor.
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Very cute post and so real, thanks a lot for sharing… It can happen to anyone and it was awesone you shared. 1 Hug From Barcelona!!!
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Absolutely hilarious and honest. It’s funny that you think the CT scan was easy compared to the MRI – it’s actually the CT that’s irradiating and potentially dangerous (if you have lots of them). The MRI is totally safe (it’s basically a large magnet). And on #11, don’t worry – the MRI didn’t destroy any of your brain cells. I can’t say the same for your ear drums!
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I do not have a brain tumor, but I found out I am having brain surgery next week. I was looking for people with similar experiences and I found you. Love your blog!!
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I stumbled upon this blog article and just wanted to say THANK YOU for a great little chuckle. Aside from the comment about the staples coming out (because mine- every one of the darn near 30 hurt like hell coming out), you’re spot on. You have a wonderful sense of humor about it all! I had two brain surgeries in February 2012, first a biopsy, the second a craniotomy (ha I still can’t spell it). Life is frustrating these days, most days, at best… but your blog really helped me to have some peace with some things. Good to know I’m not alone in this world! I hope you are doing well and recovering nicely! God Bless.
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What a great list! I wish I’d read it just after my surgery…or maybe before my surgery.
John
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THANK YOU!!! I randomly found this site while looking up a question about brain tumors. I’m having brain surgery to remove a tumor in three days and really needed a laugh. I haven’t laughed this hard in months! You are just hilarious. One of my favorites was your description of the MRI machine (the machine gun in the garbage disposal). I laughed so hard I almost woke up my husband and kids. I’m going to share your post with my brain tumor support group. I was sort of dreading the metal plate with screws that is going to hold my skull bone back in place, but compared to your description of the jelly fish spot and drainage tube, I think I’m OK with the plate now. At least I’ll get to mess with airport screeners now when the detectors go off and they can’t figure out where the metal is
I had an interesting realization the other day when I was looking up something on the internet (trying to figure out if my tumor was causing vertigo). I came across a site where a petrified woman was asking whether her vertigo could be caused by A BRAIN TUMOR! Her comment made me realize that once you know you have a brain tumor there is not much left that really scares you! That really cheered me up. And in four days my squatter will be gone and I will have a great excuse to eat pudding all day
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Everywhereist Reply:
October 21st, 2012 at 11:16 pm
Aw, Cindy, I’m so glad that my ramblings made you feel better!
The anticipation of the surgery was really the worst part for me. You will do awesomely, I have no doubts.
And remember: this will make you an unmitigated bad ass!
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CindyB Reply:
November 21st, 2012 at 11:08 pm
I really do feel like a bad ass now! I have this HUGE scar that thankfully you can’t see unless I lift my hair but before I got my 33 staples out it looked like something from a horror movie. I think I freaked out a few people when they saw it. You are right – the anticipation was really hard. So glad its over. Had my surgery one month ago today. I still feel like crap (surgery went well other than the serious blood loss, mild stroke and then the meningitis I got afterwards) but I’m still alive and kicking as much as possible. After all that the only major problem right now is fatigue. Not too bad for what I’ve been through.
I thought of you one day in the hospital when I had pudding. I need to get more!
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My mom just had a tumor removed 2.5 days ago and is already discharged from the hospital. I will refer her to your post. I know she will be able to relate to many points. Thank you for posting it.
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Thanks for posting this- my son has had 40 brain and spinal tumours over 12 years. He is always in recovery mode but still managed to party the other night (even though he wasn’t sure where he was)He got home safely but is facing another major surgery next week-his 12th.
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Hey! Reading this was hilarious. It made me laugh aloud and cry too. I have been diagnosed with a 3cm benign tumor and am waiting for a biopsy etc etc and removal. I have so many questions for my neurologist and it’s so relieving to hear someone talk so light hearted about it all when you are feeling so shit scared. Thanks
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I really enjoyed this!! I had two brain surgeries this past summer. One in July and my second one in August! It crazy when you really think about what you have been through. It’s easier to just tell yourself you are strong and you will get through anything. Are you on a follow up schedule? I have to go back every 6 months for a MRI next one is February.. Good luck to everyone that has been through this!
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I loved this post. I laughed at the part of being a bad-ass. Your right if you have a brain tumor nothing can really scare me. Well I don’t have a brain tumor but I’m pretty sure I do. I have at least over half of the symptoms and these headaches hurt like heck. The last one felt like an ice pick just hitting at my skull and I know the pain is getting worse. I can’t stand lights, like within five minutes (in the light) I get a severe headache and the only way to stop them is some pain killers that knock me out for like six hours. I haven’t been to school since the beginning of November. By the way I’m 15 so that explains school and all. I’m so scared but yet I don’t feel like its the end of the world. I have to wear these big black sunglasses everywhere I go, but on the upside I just tell everyone I’m a vampire. It’s awesome, it reminds me when vampires were cool, like in the 80′s. Jim Carey in Once Bitten is Awesome! I just need fangs. Nervous my appointment is January 2nd at Cook’s Children Hospital. Another upside I can got to the mall there and buy some clothes with my Chirstmas money and some belated Christmas gifts. Also eat Baker’s ribs in Weatherford. Every go there I highly recommend, it a million times better than famous Dave’s. I think I will eat and eat an entire dish of brownies as victory celebration. Scratch that,and ice cream cake with butter cream frosting, chocolate cake and vanilla ice cream. Yup that’s what I’m getting. P. S. I’m going to name my tumors (if I have one) Ganondorf so when they removed I can be Link the hero and prevail. ( Well girl version of Link or some second hero that fights beside him. Legend of Zelda reference.) I really love this article and it has made brain tumor expierienced seem more uplifting. I will come back to this list in case and pointed if I do have one. This has made my day! Kudos to you on this article. Hiss, someone just turned on my light. I really need to get some fangs.
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I sure needed to find this today! I have a 2nd brain surgery in a couple weeks and was having one of those days. Reading this made me laugh and cry and was a great emotional outlet! Thanks for sharing.. totally can relate!
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Everywhereist Reply:
January 7th, 2013 at 4:18 pm
Aww, I’m so glad this post helped! I hope your surgery goes well! Sending lots of hugs and good vibes to you.
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Thank you for this! My girlfriend and the mother of our 6 month old son is going in for an MRI tomorrow (the wait for the MRI and results is truly testing). We haven’t been diagnosed yet, but our usually under-concerned doctor seems fairly concerned that it is a brain tumor due to the sheer amount of specific symptoms. We are still hoping for the best! I will definitely be sharing this post with my girlfriend if it does end up being what we fear. It’s great to know there are others out there who have dealt with this and still managed to find humor in their situation!
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Hey. Wishing you all the best!
I had an MRI after a car accident. My tip: get the valium. There is NO WAY I could have survived that coffin tube without it. With valium, it was a piece of cake.
(20% of everyone who takes an unmedicated MRI hits the panic button for an early exit.)
(Turns out my 80-yr-old father, who took me in for the MRI, secretly thought I was a big chicken … until he read about baseball player who had to get out early because he was terrified. He called me up and said, “Well if it’s too touch for a major league catcher than I guess I can understand now why you were so scared.” Hah!)
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Funny – a lot of your list is as if you read my mind. I’m coming up on 11 months post diagnosis and remember it like yesterday. There is nothing worse than hearing “we found a masse” over the phone while still at work on a Friday afternnon. I was a complete basket case until I could get to a neurosurgion the following Tuesday. I especially like your post of try not to self-diagnose over the internet. I might add to watch what you read as well. Technology has come a long way, even in the last 4 years. I did have my first MRI only to satisfy my doctor to “rule out” her crazy ideas. My first post-op MRI was a lot of praying and telling myself the noise is really something to meditate to. and can almost fall asleep to it now. Fortunately, I didn’t have surgery but opted for Gamma Knife Radiosurgery and am glad to say my tumor has stopped growing. I’m hoping it has started to shrink by my next MRI in March.
I feel like my foregetfulness and tired tongue is a badge of honor because I survived a brain tumor. I don’t care that I may not always pronounce words right or that sounds are garbled sometimes. I’m here another day to raise my daughter and life is so much more liberating now that I don’t sweat the small stuff.
I wish you good health.
Robin
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Hi I would just like to say thanks for the list.
I have just found out that I have a brain tumor, yet to have the second mri with the dye to see if its a bad one, its nice to see other people out in the world who can look at things and laugh.
thank you everyhereist
john
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Thanks for this, gave me a good giggle. I’ve had two craniotomies to remove my orange sized meningioma. The first debulked it and was open. I felt like crap for 3 months. Slept and watched bad daytime tv. I ranted a lot over the informercials. My mother and husband helped wash me and I slept. The 2nd was laparoscopic and he sucked that sucker out. I felt good a few weeks later. I said the “it is a tumour” line a lot too. I was hilarious. I’ve also been known to tell people “I need that like I need a hole in the head….oh wait, I’ve already got one”. I’m now a veteran of the MRI and often doze off during them. I just had my 1 yr post surgery one done and of course am paranoid about the results. Wish me luck.
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Stumble by your blog – enjoy reading: very witty and clever! Hope you are recovering well and all the best wishes. The link may be of interest to you and everyone.
http://www.peterjuster.com
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I only just found your blog today and alot of it has made me laugh, as a 24 year old who has gone through alot of health crap when I was 10, 15 and 19 I totally get alot of what you said however with some exceptions, my first mri’s where when I was 10 so I fell asleep in them both, ct scans are boring compaired to mri’s. Also drains are absolutely disghusting, especially when you realise how far in they are, as someone who has had 2 chest tubs and stupidly looked after they pulled them out I can tell you, you almost freak when you see how long the tube is that was in your body!!! It’s good to hear that you are well though, nothing makes you love life just a little bit more when you’ve been dealt a bad hand
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Wow, this is deep. What a great list. I don’t have cancer, and I hope I never get it, but I’ve had two friends and a partner develop cancer. Good on Rand, looks like you couldn’t have done it without him.
I wish you all the best, and I wish all the best to everyone struggling with cancer.
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I just wanted to say thanks for this. I found out about 5 months ago now that I have two cysts in my head. One is over taking the whole left side of my face and the other is deep in the brain behind my right eye where there is already bone missing. I was glad to read the tone and stride you took this in because I have also been using humor to deal with this all. I have had a great doc. for the past 5 months and he has taken my humor in great strides laughing at what I say and telling me Im one of his fav. patents. He hasnt seen anyone take th news quit like I have. I have others who dont like the way I am handling it. They do not think I should make such jokes of such a serious situation but to me, there is no other way to handle it. I cant change what is going on and so I will handle it in any way that I can. I have a 4 year old and a 1 year old and they with my husband are my life so no sence in crying Id rather enjoy everythingaround me. Thank you so much for giving me a piture to put in my mind on how things might go as well, that always helps. I am being transfured by my surgen because the cyst behind my eye is growing and its just to dangerouse of a surgery for him to do but he did say the one he is sending me to is the best with not ery good bed side mannors so I will keep the things to ‘NOT SAY” in mind. Thank you again for sharing your story! You are an amazing woman!! Sorry for all of the miss spelling, my brain is like mashed potatoes right now and I cant seem to remember much of anything lately. :-[ P.S. I have named my tummer but due to the fact that we met not too long ago and the mashed potato state…I seemed to have forgotten his name. lol
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Mommy Magill Reply:
February 11th, 2013 at 10:23 am
And with the ear rings having to come out…I cried when I had to take my nose ring out and they said I needed to leave it out.
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Everywhereist Reply:
February 11th, 2013 at 11:37 am
Oh, man – you had to take your nose ring out permanently? That sucks! Though I bet it makes MRIs a lot easier!
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Mommy Magill Reply:
February 11th, 2013 at 8:11 pm
I am only on CT scans now because they are the only thing that can also keep track of the bones in my head as well. Since one of the bones are missing I have to have a CT that can keep track of making sure theres no spider webing on any other bones and measure it all. They said there was no ring aloud at all to get it done and I have to get it done. It was probably the thing that saddend me the most. I felt like for now I was missing most of what made me, me. It will all work out though and I will get it re-pierced as soon as I get the green light. Thanks again for sharing this, it was truely great!
Everywhereist Reply:
February 11th, 2013 at 11:37 am
I’m so glad you liked the post – and no worries about the spelling, I totally understand. I had scrambled brain for MONTHS.
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The day before my brain surgery, my uncle told me about a drunk man in a hospital he saw. He said “He was in a motorcycle accident, and had gravel all up his leg. Every time the nurse pulled a piece out, he was so drunk that he forgot where he was and would gasp in surprise ‘Oww!’ in a deep southern accent.”
My ma told me in ICU post-op, everytime the nurses checked my IV, I would go “Owwuh!” and they would panic. Then, high on dexamethasone and morphine, I would laugh.
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Everywhereist Reply:
February 18th, 2013 at 9:26 am
Oh, man. That’s delightful.
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Thank you so much for your light hearted story. I am heading down the highway now, on my way to my pre-op appointment, scared as hell, and your blog was just what I needed.
Hope you are still doing well.
Gayle
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You can pick at a brain tumor? Gross. Use your nose like a proper lady…
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Everywhereist Reply:
February 18th, 2013 at 9:23 am
Well, you can pick at the scabs incurred while operating on your tumor. Which sounds really gross, huh?
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I loved reading this… I just had a biopsy in Dec 2012 but I wish it was removed. I guess they only want to do radiation and not remove it because of where it is located but I am having things happen that scare me very much. I am not sure if they are small seizures or not but I am trying to find what it may be and cannot even describe it good enough… I am so ready to just feel good again… I miss it so so so much. Thanks for giving me a great read….
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Everywhereist Reply:
February 18th, 2013 at 9:22 am
Sarah – I am bummed to hear about the seizures – I hope your docs figure out what’s going on. My tumor was just cut down – not entirely removed.
Fingers crossed you feel better, and soon. Sending lots of hugs your way.
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Thankyou this was so good to here, I know you will realise how comforting this is to me who I s about to start my treatment. Thank you again
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Michael Reply:
February 19th, 2013 at 11:04 am
I’m 18 and now feel like I have the strength to get through this.
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Thank you. I agree with your note on the MRI machine. I lost all smell and taste from that machine and now have to prove it in court. So loud and dangerous for anyone who has lived through a head trauma then a month later to have an MRI and be injured word than the trama is devastating for me. Than you for your post and I wishh you all wellness.
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Of all the thngs I have read to this point, this is the most informative. And pleasurable. Had an MRI for nueralgia issues, a different nightmare, but was “so excited” to learn it was “only a tumor” pinching my trigeminal nerve. I thought, “This thing in my head can be fixed! I have 6 kids so I’ve had hospital stays and even liked them.” I was incredably optomistic and certainly relieved for several days. But, now I am starting to see the reality sink in. Especially the part of how hard it will be for the ones I Iove. Thanks for showing some humor and life to what I have seen as a depressing subject online. I want to stay optomistic.
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I’d just like to thank you for this list. It really made my day. I’m 20 and just started college and was recently diagnosed with having a benign brain tumour. I’ll undergo surgery within a month and my doctors seem very optimistic about the outcome as it is located close to the skull and in the non-dominant half of my brain. I have a question for you though – do you think it will be possible, speaking from your own experience, for me to continue college after my surgery or will I be too dizzy for the next few months? Do you feel like you’ve made a full recovery by now? Thank you once again for sharing your lovely and entertaining thoughts with us.
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Everywhereist Reply:
February 27th, 2013 at 11:43 am
Hi Jonathan!
It’s really tough to say, since everyone is different. My surgeon told me that some people are up and walking around just a few days later. Some folks don’t have trouble at all. That was NOT my case. I was out of it for several weeks (I heard that this was more because of the medication than anything else). I couldn’t really concentrate on anything, needed to sleep A LOT, and had the attention span of a gnat. It got better after a few weeks. I was back to blogging after about two weeks, and back to feeling exactly like myself after about two months.
It will really depend on how you react to the meds and your surgery. Odds are, though, that you can probably bounce back pretty quickly, since you are much younger than I am!
Good luck!
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Okay, I see. Thank you for your quick reply, and thank you so much for sharing this with me. It’s so good to find out about this from someone who’s been through it already.
All the best,
Jonathan
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I love this post. It’s so spot on with my life, too. I had a tumor diagnosed & removed in March 2012, it was in my cerebellum and I had to go to physical therapy for two months to regain my balance. Can I add a #? If you have to go to PT to relearn to walk, bring high heels toward the end and get some help in those puppies! I’m trying to teach myself NOW and it’s hard! You may also need training wheels on your bike!
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I am laying in the hospital for the last night, being released tomorrow post tumor removal. I have been bugging out, wondering if I’m going to be different at all now. So happy I stumbled onto your blog, it was just what I needed right now. All the best, kim
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Everywhereist Reply:
March 3rd, 2013 at 7:28 pm
Hi Kim! You will be fine. Seriously. I thought for weeks that I would be (and was) a different person, but honestly, after all the drugs are out of your system (which takes a few weeks or months), you will feel a lot better. And a lot more like yourself again. Be patient with yourself.
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Hi, thnks for sharing your story. I will be having a surgery by next month and ill tell you I’m really scared as hell. Just the thought of it makes me cry. By reading your stories I feel like I can be as brave as you. Thnk you.
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Everywhereist Reply:
March 7th, 2013 at 5:30 pm
Awww, I’m sending lots of hugs your way! It’s easier than it looks. I promise.
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Laughed my guts off reading your blog.. I had a brain surgery last year and here is my peek-a-boo after my time in the ICU.. https://www.facebook.com/permalink.php?story_fbid=321829414508391&id=321824961175503
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My screws are titanium and the doc said if they set off airport security, then they were killing everybody who walked through.
Seveeral things to add….
You may need to be half awake (twilight) during part of it so they can poke wires In and watch your arm twitch or whatever. Double bad-ass.
You don’t sing any better in twighlight state. And it distracts a guy who really needs to focus. Refrain from the refrain.
The post-op drugs may include things that might not alllow you to eat all those goodies. Even the ones your loved ones sent.
NOTE: the gifts are still much appreciated, but checking diet restrictions before is better. Probably not practical tho.
Just think of the MRI as an industrial music nightclub disco and you will be fine.
I only had to stay overnight for my (two) craniaotomies. Seems odd, but with no muscle tisssue just skin and bone cut and sealed it’s a lot less taxing than you think… Course I hate staying in hospital. You get zero rest.
First time construction on floor above jackhammer by day and screamer at night… Doc walked in and said he wanted to keep me another night for observation. I told him no, and why, and needed rest and wasn’t going to stay.
You can be all cranky at the staff because of the situation or nice to them. Guess which one lets you bend the rules your way.
Some people just won’t be able to deal with your condition and will disappear from your life. It’s not you, it’s not them, it is what it is.
There is valuable info online. You have to have some commmon sense to filter the 99% of everything is crap out. You also have to be ready for FACTS you don’t really want to find out to be there in black and white.
Focus on your exact condition. GBM or whatever has nothing to do with each other.
The brain is complex and sub-divided. Where your tumor is could be more important than what it is. Or not.
You don’t sing any better under tw
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I’m going for my second tumour removal tomorrow, the info in your blog is spot-on, I had a good laugh.
I do walk around talking in cartoon style my dog and cat, I do eat 7 slices of freshely baked rye bread, the steroids turn me into a hungry wolf. I am short tempered at times and then laugh about it seconds later.
I am anxious but also happy, the motto is: You only live once – so why not, eat chocolate, watch series, sleep for three days in a row, lounge in bed, let friends and family spoil you, don’t be all hardheaded.
Stay in pajamas for three weeks or three months, when things get this serious, it is time to relax, do what you want and laugh a lot.
Do ask for sleeping tabs, or valium and anti- depressant, it helps, I promise, this is your a time to go with the flow.
regards and best of wishes
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Hi , I am another one that had a tumour removed 4 weeks ago, I never gave it a name but referred to it as my visitor . reading your post is just so very well put together , you have made me smile lol x.
I can relate to do much of what you have written ,the one that stood out the most was the lack of movement In the Bowels god I can tell you the day I eventually got things moving again was one hell of a relief .
My tumour Gould not be taken away completely as its near the brain stem ,but 4 weeks after my opp I am now the best I’ve been in over 2 years
The surgeon Mr Eldridge at the Walton centre in Liverpool has given me my life back and to me he is my Hero .
Thank you for a superb post and hope all goes ok in the future xx
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I’m not a blog reader, but your posting is one of the funniest things I have ever read, anywhere, while at the same time being one the most heartfelt. Thank-you for sharing !
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3 days ago i was told they had found a brain tumor i have 4 kids and 4 step kids ranging in age from 3-16.. i found ya blog today to find what i might be in for and i want to thank u for your blog.. i was scared to start with but after reading this im less scared i havent named my tumor yet have been thinking about naming it at moment its just a mass that latched on and weighs me down and cant get rid… ive had a few laughs though a few arent happy how well im coping… i have a better understanding of what could be comming up and i dnt feel scared from the not knowing.. so once again thank you from a not so scared young mum in new zealand… and hope your recovery is going really well xxx
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Everywhereist Reply:
March 29th, 2013 at 3:53 pm
Chrissy –
I think it’s wonderful that you are handling it with grace and humor (don’t let other people get you down – you are coping the way you need to cope). I’ll be thinking about you and your kids! Glad to know that you have so many little ones around who love and care for you.
Hugs,
G
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I was half laughing half crying reading this as I’ve all this to “look forward to” having just been told yesterday that I’ve a brain tumour. if I can handle it with half the grace, humility & humour that you did I’ll consider myself lucky. good luck on the rest of your life journey (PS if you’re allowed give cycling a try rather than running, its just as good for fitness but easier on the body – I think anyway!)
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Love your story!
I fought the Big Brain battle in 1989. I was 17 at the time.
Now 41, going threw the MRI process again. It looks like I will have to get my battle boots on again.
Keep up the great work
Thanks
Kim
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I absolutely loved this! Had surgery to remove a four inch meningioma October 2011 and all 71 were SO TRUE !! for the record….I named mine LUMPY. I had two VERY handsome physical therapist and I called one of them CHIP and the other one DALE. OMG. this didn’t speed up my recovery. I had TWO reasons to stay put for a while. LOVED the attention. They finally moved me out of ICU because after having fits of laughter they felt I was we’ll enough to move to a regular room. Three weeks without Chip and Dale. all jokes aside…the best recovery method is to laugh at yourself. thank you for the story.
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Everywhereist Reply:
April 26th, 2013 at 10:26 am
So glad to hear that you are doing well, Cheryl. It sounds like your recovery was pretty damn terrific.
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you’ve said it all…..a lot what I felt and did….especially the picking at the scar bit!
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I am now 10 days after surgery to remove my tumour. I am also pregnant with our first baby. I laughed at this wonderful link. I don’t think I could have read it before my surgery but now I can and yes it’s sooo true
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Everywhereist Reply:
May 6th, 2013 at 10:15 am
I hope you are doing well, Stephanie! Congrats on your surgery and your recovery (and the pregnancy!) So many congratulations are in order.
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So on the money on every point, and love your style!
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This is awesome and SOOOOO true! Incredibly well written! I have shared it on the Meningioma Uk Facebook page and it has made lots of us smile so thank you xx
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So good – 3 months out of surgery myself… glad others can be as crass and carefree as I am about this. No, not fun, but really, not all that bad — getting waited on hand and foot.
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Everywhereist Reply:
May 6th, 2013 at 10:13 am
Congrats, Katy, on your surgery and recovery. It sounds like you are doing well!
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hi all, hope you dont mind me writing…..reading the above was both amazing, funny and very familar to me….my wife was diagnosed with a benign brain tumor last summer….its inoperable, but so far apart from causing night time epilepsey seizures, all is kind of ok……personality changes in my wife are pretty all over the place….its kind of got to a point now where she has asked me to move out….how long for i dont yet know…. i love her to bits and really have been doing everything I can to help her through the scans and biopsey…..( she says her feelings have changed about me since the epilepsey first started, although when we found out about the tumor we couldnt have been any closer as a couple whilst it all was being uncovered ) its been a helish year and i want to keep my wife happy, even if it means i have to leave her for good, but if by chance anyone can offer advice on the best way to manage personality changes, how i may best support my wife even if im away from her….or if there are any treatments to help alleviate the mood swings/personality changes……..i think im grasping at straws here but im losing my wife and im open to any help/advice I can get…..all the best, jon
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Everywhereist Reply:
May 7th, 2013 at 2:51 pm
Hey Jon,
I am so incredibly heart broken to hear about your situation. I’ve heard that a lot of the epilepsy meds can cause some fairly serious mood changes, and that tumors on certain parts of the brain can impact emotions and personality as well. I’m so sorry to hear what you and your wife are going through. I don’t know what help I can offer, but there are some good support groups online for the families of people with brain tumors. I hope that they might be of use to you:
http://www.braintumor.org/patients-family-friends/find-support/
I wish you the best of luck.
Hugs,
G
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Jon Reply:
May 11th, 2013 at 8:42 am
Thank you will take a look….. Feelin a but low at moment, met up with her to go for a second opinion, not much better news apart from hearing mor details about the tumor and why it can’t be removed… Next day she asked me to go again..,…. Just have to try and respect her wishes and leave her be for now
Thanks again
Jon
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suzanne Reply:
May 14th, 2013 at 12:27 am
Jon, I had the same with my husband, if he didn’t get what he wanted he would behave like a spoilt child, and then we would get the abuse, it was always the same thing, I shan’t bore you with the swear words but it was he was going to sell the house share the money and he would find somewhere on his own and me and the kids could find somewhere and there would be an awful lot of f words in that! he was normally a happy go lucky chap till he got the tumour, heartbreaking but hang on in there as it might just be fear and frustration on your wife’s behalf that is making her lash out at you! As the song says, you always hurt the one’s you love! Is she’s on meds would she remember to take them if your not there cos my hubby wouldn’t have done?
Good luck Jon xx
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Hi, I just read through all of these and just wanted to comment on a few that I could really strongly relate to. It sounds like you were in a similar situation to me. I don’t know if yours was cancerous but mine was benign but still the scariest experience of my life. It’s nice to hear your positivity and humor. Whenever I tell people I had a brain tumor 6 years ago they are shocked and get uncomfortable. But I think it couldnt be explained better than everything you wrote.
17: I did this unfortunately. I went to college to study neuroscience and devoted my life to studying the brain. Don;t get me wrong I really enjoy the field I’m studying but it lurks at me to realize that I still don’t know why it happened to me. I’ve now expected giving up trying to understand.
26: I worked at the research lab where I donated my tumor and years later tried so hard to find it. again a failure
54: this is so true beyond belief. I dont know what I would have done without my mother. I could not do anything on my own for at least a month after. I was afraid to be alone and she comforted me so much.
57: dont say you don’t remember them putting it in and out. When I awoke from surgery in the ICU I opened my eyes to 4 people surrounding me removing my catheter (or fixing it- i was a little groggy). It was very nerve wrecking to see all of these people surrounding me while i was exposed.
Other than that thank you for sharing this. it was so nice to read
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Hi I just found out a week and a half ago I have a brain tumor. I am married, have three children and I was and still am scared to death. I have my consultation with a neurosurgeon tomorrow. I just wanted to tell you before I read your blog I was so upset and out of it. I then found your blog and it gave me the okay to laugh. I laughed and laughed. I was afraid my husband would think I was crazy and losing it. “She just found out she had a brain tumor and she is laughing???” From the bottom of my heart thank you so much for this. It gave me the strength to not be as scared and forge on and realize that this is just another battle that I will have to get through and it will help me to try and have a sense of humor about it, or “sense of tumor”. I have saved this so I can read it again and again, should the need arise.
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Thank you for giving me some insight from a patient perspective.
My 3 1/2 year old daughter has an inoperable tumor on
her pituitary gland. She’s going thru chemotherapy and her last two routine
MRI’s show that all is stable. It’s slow-growing and benign but still considered
brain cancer. Hard to wrap my mind (pun definitely intended) about it- she was diagnosed November 2011. Different situation than what you went thru but thank you for sharing your open, honest, raw, funny and trying experiences. What you have gone thru is hard and I appreciate your candor and love your sense of humor. Without laughter and love life is just not as much fun. Anytime I hear of anyone with a brain tumor it clearly resonates with me and I immediately feel a bond. Thank you and I am glad to hear you are doing so well and surrounded by love.
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Just read this and it made me both laugh and cry, I could relate to a lot on the list! Sadly it was my husband who had the tumour and his only aim in life after the op was to get back to work, even though his prognosis was shit, expectancy 18 months we had 6, and like you he was on a roll, but sleeping quite a lot! He was also a cake and chocolate person, and I would take him out for lunch and would let him eat whatever he wanted, his tumour he named, before surgery it was Tommy, and then with what he had left because they couldn’t take it all, he called that Mungo, and Mungo got blamed for an awful lot of things, lol! I didn’t see on your list about family members that think they know better than the doctors, they have got it wrong, it’s not a tumour and there not going to die, I had that from both my sister in laws, they knew someone who had had a similar thing and they had made a “remarkable” recovery, lucky them, they obviously didn’t have the same aggressive tumour as Keith! I’ts a shame he’s not still with us as this list would have helped him, as he always asked how he got the tumour, and honestly, I have no idea if he spent his youth with his head permantly in a microwave, lol! Thanks for giving me an insight into how he felt and probably thought, hope your ok and enjoy your life, good luck, and thanks again for the laughs and tears! xx
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Everywhereist Reply:
May 14th, 2013 at 7:17 am
Suzanne –
I am so, so sorry for your loss. It sounds like your husband was very lucky to have someone as caring and understanding as you in his life.
Sending you lots of hugs,
G
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