Jul 24, 2015 04:55PM PoppyK wrote:
((Hugs)) Tomboy. Cancer sucks.
For those who have met on Breastcancer.org and want to continue growing their cybersibling friendships beyond cancer.
Posted on: Jul 18, 2015 05:14PM - edited Feb 20, 2016 09:31PM by SlowDeepBreaths
I'm hoping there isn't another thread like this. I did a search and saw one for stage 4, but nothing for everyone else. My very special friend on BCO (Tomboy), and I have talked about a Crazy Town thread for awhile now. I know she will be happy I finally took the bull by the horns!!
I wrote a little story about visiting Crazy Town last year on my blog, and I received some lovely emails from women all over the world talking about how terrifying those feelings can become. I thought I would share that story with my BCO sisters. I know many of you can relate to the craziness of worrying about recurrence or progression. I think my experience epitomizes the crazy place our minds can go. I've found when I can laugh at myself, I always feel better.
"My master bath has its own little room for the toilet. The sink, shower and tub are all in the same room. At night when I have to use the bathroom, I always turn on the closet light which is right next to my sink. This way I don't have to turn on all the lights above the sink. They are very bright and there are a lot of them. I do this so the brightness doesn't wake up my DH. Being the OCD person I am, I always wash my hands after using the restroom – even in the middle of the night.
One night last week, I was doing my usual ritual and I caught a glimpse of a big blackish/brown mark on the upper left side of my chest.This thing was huge. I could feel my heart beating out of my chest when I caught a glimpse of it. I'm sure many of you will know what I'm talking about - that feeling of dread.I ran my fingers over it and it felt raised. I couldn't imagine what it could be – it was SO big. I thought, "Oh great, here we go again, now I've got skin cancer." Then I decided to risk waking DH up by turning on the millions of lights above the sink. Then I got a closer look. UNBELIEVABLE!!……it was a piece of chocolate from a cookie I had eaten earlier!!!!! Apparently it had melted into my chest and I went to bed that way. Can you imagine?? Now if that doesn't give you a good laugh, I don't know what will. CRAZY TOWN!!!"
I have many stories since diagnosis. I call it going to Crazy Town. Some of them are funny, others not so much. I usually go there in the middle of the night when everyone is sleeping, and my mind wanders. There are no trains, planes or busses out of Crazy Town in the middle of the night. I also go there at times when I'm waiting on test results. I hope we can all share our Crazy Town stories. Talking about it has helped me to stay on the outskirts of the town. I've been really good about not visiting lately, but this week it's been a real challenge.
If you have tests coming up, or you just have a day where you're worried more than usual, or if you just want to hang out and chat, please stop in to visit. It is my hope we can have some fun here and get each other through on difficult days with humor, kindness and hugs!!
Much love to all,
Beppy ツP.S. If you've just been diagnosed, I strongly suggest starting a blog. Whether it be just for yourself, or you'd like to share it with others. It's been a good outlet to get my feelings out as well as a wonderful timeline to refer back to when needed.
Great info about breast cancer and PTSD:
Posts 61 - 90 (15,886 total)
Jul 24, 2015 04:55PM PoppyK wrote:
((Hugs)) Tomboy. Cancer sucks.
Jul 24, 2015 06:34PM Suladog wrote:
OMG!!!! I can totally relate
Jul 24, 2015 08:03PM Tomboy wrote:
But I was just re reading this whole thread again, to lighten the heck up, and Suladog, that summer house is pretty funny!
Jul 24, 2015 08:56PM rleepac wrote:
My trip to crazy town is starting earlier than anticipated. Saw the MO on Thur and because of worsening nausea and headaches we are doing a head MRI on Wed 7/29. I don't expect anything to show up but it's another test to wait for...sigh
Jul 24, 2015 09:39PM Tomboy wrote:
Ah, Bekah, sorry, I hope it is just the heat and the humidity. I have been having head aches, but my boymanfriend has been, too. Wishing you the best, and that it really is nothing. You did some great drugs, so I am thinking it is just a head ache! Are you doing hormonals ?
I mean, you just DID the bald-making-stuff, right? And still on our magical herceptin? You have a pretty face.
Jul 24, 2015 09:42PM Jackbirdie wrote:
I've been lurking too... I don't have any tests coming up but it doesn't stop me from worrying.
I think what pushed me into posting was I wanted to say to Tomboy how sorry I am about your friend.
I had a dear friend who had her bmx 6 weeks before me. Our dx and situation were very different. But it was still very hard that she died just when I was starting chemo.
I hated to lose a good friend, but she suffered very little. I was really in crazy town then, thinking I was going to get a private screening of my own death. But it turned out pretty peaceful. I miss her. Cancer really does suck
Jul 24, 2015 10:12PM Suladog wrote:
Checking in... Got some sciatica in my right leg going on so of course I've got sciatica-cancer or some such even though I've had this problem off and on since my 20's. So.....anybody around here tired of people asking them how they're doing? How's their health???? Are you feeling up to things, stronger etc??? I got a lot of that the last time around 25 yrs ago and after a while when I was still alive they stopped. Now it's all going on again... I walk and run every day, I'm in great shape and still they ask.arrrrrrgh
Jul 25, 2015 02:58AM M0mmyof2 wrote:
Yep. This last week I got a "you look fantastic" out of my regular doctor after seeing the nutjob new doctor he has working with him now. I get that from lots of people who know what I went through these last two years on this "oh not so fun" journey in Cancerville.
Jul 25, 2015 05:55AM - edited Jul 25, 2015 06:04AM by queenmomcat
Suladog: oh gah--sciatica-cancer. Yep, I got that here in Crazytown too. Not quite to the point of OMG METS i have METS in my SPINE. )It was a pre-existing problem for me too.) More OMG the cancer treatment's wrecked fifty thousand dollars worth of back surgery. How sad is it that my first thought was "Oh, good.At least I'd get to see Dr. Neurosurgeon again." after the desensitization of so many consultations with and treatments by oncology people? (Dr. Neurosurgeon extremely personable/wonderful patient=interaction manner)
But yeah, already getting tired of the "How are you doing? Are you feeling OK?" and this is my first close encounter with cancer of any kind.
Jul 25, 2015 11:25AM SlowDeepBreaths wrote:
Gentle hugs to you Tomboy. I wish I had the power to change it all.
rleepac, we will all be in your pocket on Wednesday. Sending best wishes to you!!
Jackbirdie, Welcome to this thread! My condolences to you on the loss of your friend. Our worries are all too real, I think it helps when we can get them out.
Suladog, hahahahaha. I really don't get tired of people asking how I'm doing, but I do wonder how they would react if I actually told them. When someone asks how you're doing, I don't suppose they want to hear our whole long list of complaints. I always have this vision in my head of a long scrolling list that falls open when I'm asked, that slowly unrolls into oblivion. I typically just say, "I'm hanging in there."
queen, Welcome to this thread! Great to see you here! Wow, 50 grand worth of back surgery?? Happy to hear your Neurosurgeon is so...ummm....appealing!
I wonder if a majority of oncologists are socially awkward. Two out of the three I've talked to seemed to be. I don't have time at the moment to tell a story about my MO, but my last visit left me trying to decide if it was a funny or creepy visit. hahaha
Off to get ready for my CT scan. I'm trying to stay far away from CrAzY tOwN today!!
Love to all!!
Jul 25, 2015 12:36PM Tomboy wrote:
Thanks, jack birdie. It's a woman on here, much too young. i am not friends with her, per se, just I have read many of her posts, and it just ain't right. I will send your hug to her.
Love it: sciaticancer!!!
Slow, I would really like to hear THAT story, creepy or otherwise!
All , hope you have a pretty good weekend!
Jul 25, 2015 02:00PM queenmomcat wrote:
(waves hello to Slow Deep) I'd been lurking for a while, to suss out the group, what gets said, before posting myself. I can't now remember how I'd come up with that figure last fall, but partly it was a compound surgery, and I think I'd included hospitalization.
I haven't sufficient data on practitioners in different specialties to extrapolate, so for the moment i think I'll just chalk it up to difference in approach. But doctor's charisma sure helped me get through the back issues!
Jul 25, 2015 03:18PM Lucy55 wrote:
Slow.. Thinking of you xx
Tomboy.. Sorry to hear about your friend.. I bet you are so much comfort to her.. Cancer truly sucks!!
Suladog.. Thank you for sharing your story.. It has given me such hope knowing you are 25 years out , and all the ladies in your support group are all still here too 😃
Mommy.. Great to see you here!
Queen.. Glad you have decided to join our fun crew in Crazy Town.!
I have been in Crazy Town last couple of days.. We have been moving furniture around around the house during the last week.. So I have been pushing, shoving, lifting etc.... But the day before yesterday I started getting random stabbing pains in my groin ( and no.. I know what you're thing.. But it's definitely not from too much vigorous sex. 😃) ... Anyhow.. If this had happened 18 months ago I just would of thought I'd been too hard on the old body.. and pulled a muscle.. But not now.. I have gone STRAIGHT to Crazy Town.! I even rang one of my sisters yesterday and asked if she'd ever had stabbing pain in her pubic area ( can't believe I did that! ).. and she said "no..only the time I spilt a cup of hot coffee on my lap ! " ugh. I could tell she was thinking I was heading to Crazy Town again.!!
Jul 25, 2015 03:29PM queenmomcat wrote:
A little relieved I'm not the only one who gets a random ache and immediately flips out about AAAAHHH IT'S BACK! rather than realizing "I shouldn't have moved all that furniture/had a racy night/startled the cat/overfilled my coffee mug."
Jul 25, 2015 03:43PM dsgirl wrote:
Slow, in your pocket for the scan, hope I am not too late.
Jul 25, 2015 06:57PM SlowDeepBreaths wrote:
Funny or Creepy?
Ok, here is my story. At the end I'd love your opinion on whether it's funny or creepy. I haven't decided how I feel yet, so the majority will rule. hahaha
I went to my MO last week. He has NEVER examined me. He is good friends with my surgeon, so he just left that all up to her. Typically, I have just come from seeing her anyway, so it always worked well. My BS and MO are in different facilities about an hour apart from each other.
So, this visit the nurse had me put on one of those lovely, attractive gowns we all love. Usually I will say no thank you, but this time I did want him to check out a lumpish thickening under my cancer side arm. My appointment with my BS isn't until Dec.
So there he was examining me for the first time and he proclaims, "Wow, they did a really great job!!" My DD came with me on that visit, and I saw her eyes get really big. You'd think I'd be used to doctors looking at my boobs, but I could feel the blood come rushing into my cheeks. I said in my meek, embarrassed voice, "I had a lumpectomy, there was no reconstruction." So he continues examining me and says, "They are nice....REALLY nice." By this time I'm sure my face must be three shades of red, and the look on my poor DD's face really was priceless.
My poor left boob has been through the wringer. She had an excisional biopsy in '99, three core biopsies and a lumpectomy and has produced a total of five lumps.
It has also been radiated, and my right one hasn't been. So anyone with a lumpie knows the radiated one is usually smaller, tighter and higher up. Well the other girl is larger, smooshier and hangs down to my knees (slight exaggeration).
So here's my question.....funny or creepy??
BTW, all finished with CT scan. They sure were nice to me.....REALLY nice to me. You think they were feeling sorry for me for some reason????? cRaZy tOwN!!!!! I almost wish they were rude to me!!! hahaha
Thanks to all for the kind words of encouragement.
queen, sussing out the group? Wondering if we are too crazy??? Or, not crazy enough?? heh hehLucy, hahahahahahaha......now that was funny!! I must admit, that was my first thought. I won't even go into my Crazy Town story of the type of cancer I thought I had down south. Extra big hugs to you. I'm glad you shared your worries here. I try to go with the 2 or 3 week rule. If you've had symptoms longer than that, go have it checked.
Wow this was a long post.
Jul 25, 2015 08:09PM queenmomcat wrote:
Slow Deep: Wondering if I'd fit in. Take that how you will.
Creepy or funny? hard to tell if it was the first time he'd examined you, but it left me about 60/40 amused to creeped out. But that's mostly because YOU came away wondering, even if just a little bit. (This much I'm glad of: all three doctors I've seen so far left me with the distinct impression that they might as well have been comparing my elbows.)
Jul 25, 2015 08:39PM PoppyK wrote:
Slow, I think that's a bit creepy. The first comment is ok; the second, not so much. I've had doctors comment that the plastic surgeon did a great job, but not say they were "really, really nice". My visit to the PS where he demonstrated how to massage my scars was awkward, but if he didn't demonstrate, there is no way I would have massaged the scars with as much pressure as was needed.
Well, I woke up about 4 am Friday morning with excruciating back pain. By 6am I took some Norco that was leftover from my surgery. My DH took me to the Urgent Care. I was in so much pain, they took me to the back so I could lie down. When the doc came in, he felt my abdomen and back. I told him it wasn't muscle pain; it was different. Anyway, HE DROVE THE CAR TO CRAZY TOWN. He said with the amount of pain I was in and with my history of cancer, he had to consider cancer in my bones, kidneys, liver and so on. He also considered Problems with my pancreas, gall bladder, appendix and so on. Why the heck did he have to bring up cancer? I thought my DH was going to pass out! I was in so much pain that I could barely understand anything.... He gave me the choice to go to the ER or have the tests there. It's a long story, but I had CTs, tests, blood work.... I was there 8 hours. Good news, no signs of cancer. 3 nurses tried many, many times to start an iv, which is never a problem with my veins.... until that day. They kept eyeballing my cancer/lymph node side. They blew several of my veins. Even the one I told them was messed up by the reaction to the chemo.... I finally found a pain pill that is getting me some pain relief. We're not certain what happened, but it could be Crohn's or IBS... But it's not cancer. Who would have thought the doctor would have headed straight to Crazy Town?
That probably doesn't make a lot of sense, but between the chemo and the meds, I don't know if I'll ever make sense.
Jul 25, 2015 09:10PM Tomboy wrote:
Awww, Pop. I bet it is just a pulled muscle of some sort, I think i can kind of tell how active you are, I bet. Bad doctor, driving to crazy! Did they check urine?
Beppy, He probably has just seen a buncha messes, or maybe he really thought you had recon. I think it's nice that you can still blush!
Jul 25, 2015 10:02PM Suladog wrote:
Oh god!!! I'd hafta call shotgun on that ride to CrazyTown, talk about zero to 6,000!!!
That's definitely hitting the creep -o- meter for me. That kind of admiration is just uh, weird comes to mind. Sometimes Ireally wonder about these guys
Jul 25, 2015 10:20PM 2nd_time_around wrote:
Just stopping by to check out this thread. Thanks SDB for starting it. Can one be in Crazy Town and it has nothing to do with tests? For me, being a 2 time BC survivor is enough to make me crazy. But then again, you already know that I am crazy, very crazy ()
Jul 25, 2015 10:20PM Suladog wrote:
Well, we just got back from a night out with friends at one of our favorite restaurants and I got the full "how are you doing? How are you feeling" thing which as I say really creeps me out. Then there's the sad face. I know they mean well but...shit I hate that stuff. So that's going on the a couple of friends visiting town from New York come over to our table and I get the sympathetic back rub, more "how you feeling?" I say I'm fine , just great! Back to work on a new script, doing fine" the husband of this couple is a TV producer, so he asks about the new movie, then his wife tells me about their friend who was just diagnosed with stomach cancer and "had his whole stomach removed!!!"
What makes her think I want to hear this while out to dinner and eating?! . At least the guy is alive. Geeze! So then she quietly asks me if I lost my eyebrows and eyelashes during chemo ( she knows I cold capped) so "yeah" I said "I lost every hair on my body. Except on my head" I let her chew on that a while.
I don't want to appear pathetic among work colleagues and I'm really looking back to normal again, and trying to act back to normal and yet this "concern" comes up and freaks me out. It took a couple of years last time for people to stop asking me how my health is.... The remedy seems to be just staying alive so they lose interest.
Jul 25, 2015 10:39PM Beatmon wrote:
Suladog: love that last sentence..stay alive so they lose interest
Jul 25, 2015 10:44PM Suladog wrote:
Ha yeah, it's just hiding in plain sight
Jul 26, 2015 01:01AM SusanHG123 wrote:
I am reading and laughing and crying at the same time. We love our friends and cancer sucks little green weinies.
The headaches. I was convinced (still am a bit) that I had brain mets. My head hurt in the same place every day. Now-for those who do not know-I am a nurse and should know better. Anyway--this went on and on. Every morning mid-morning my head started to hurt. Would slow and stop close to evening. Had a brain MRI. Clean as a cuke. Then, I realized I was not drinking fluids in the morning because of nausea (which I STILL have) and coffee made me gag. By the time I could drink something the dehydration headache was horrid. I now start slow, take something for nausea if I have to, and TRY to say dehydration instead of BRAIN METS. But I probably have brain mets.
I am being punted to a GI doc for a consult due to massive anemia. This time I am not one bit worried. Have had 2 previous colonoscopies due to bleeding and nothing. Watch this be colon cancer. Wait. Now I am worried. It probably is colon cancer despite being bright red instead of dark and not losing weight and no terrific gut pain. Because I am "special" mine will be cancer. So I probably also have colon cancer. And probably in several places. 1 minute and I am over the fence to mid-town.
My armpits are clearly full of cancer. I do not sweat. I do not sweat because my right is missing 23 nodes and my left is missing 8 or 18 or something. So I do not sweat. My armpits are lumpy and bumpy and thick and I still cannot feel anything. So I have cancer of the armpits.
My left eye drains some. Yes, I have terrible allergies but clearly this is cancer of the left eyeball since my right eye does not drain. So I have cancer of the left eyeball.
I am pretty sure I also have cancer of the fingernails and toenails. My toenails all lifted and moved away during the times I was toxic on taxol and taxotere. My fingernails--lost about half of them. The rest had funny odd ridges. None of them grow very well and all have funny odd ridges. So I have cancer of the finger and toe nails.
My bones and joints and back really hurt. That, however, is not cancer. That is from the damn estrogen sucking drug I take to prevent cancer from recurring. I get to pick between pain and cancer. Hmmm. And I had a bone scan about 6-months ago and it was clean. So I do not have cancer of the bones and joints. Unless the cancer started within 30 seconds of completion of the bone scan.
And I am NOT a paranoid person. I cannot imagine how I would feel if paranoia arrived on some shiney little plate. I gave up sleep for lent in 1994 (oh that is a story). I know now if I sleep I cannot fight the demon cancer cells. Plus the fricking estrogen sucker keeps me from sleeping.
I rather enjoy crazy town.
Jul 26, 2015 03:25AM Lucy55 wrote:
I just wrote a long post that got lost in cyber space some where ..so just a short version this time ..
Susan ..your thought pattern is exactly like mine ..We must be twins. !!
Poppy ..sorry you had to go through such a hideous , awful ordeal..enough to scare you ( and Hubby ) all the way to Crazy Town ..Seriously ..what was your doctor thinking. !!
Slow ..Hmm ..yep definately a bit creepy ..but. , maybe a compliment at the same time. 😃
2TA ..Yes ! Definately possible to be in Crazy Town even when not going through tests ..I have visit the town numerous times over the last year. !!
Take Care Everyone ..
Jul 26, 2015 06:56AM queenmomcat wrote:
Poppy: No, it makes absolutely perfect sense to me. Indeed, I'm impressed that you made so much sense after the day you had, not to mention the kind of pain pill that would relieve that kind of pain level.
I wouldn't have thought, prior to my cancer scare last year, that "We don't know what's causing your excruciating pain." could be good news. Even I, who was diagnosed with straight CIS only two months ago, have had a few 'OMG its metastasized' moments. Doesn't matter whether it's good medical practice to check for mets when a patient undergoing treatment shows up in that kind of pain.
Jul 26, 2015 07:47AM Lucy55 wrote:
Ducky ..Hi ! I'm so happy , happy , happy to see you here. :-)