Jul 21, 2015 01:02PM SlowDeepBreaths wrote:
For those who have met on Breastcancer.org and want to continue growing their cybersibling friendships beyond cancer.
Posted on: Jul 18, 2015 07:14PM - edited Feb 20, 2016 11:31PM 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 31 - 60 (15,886 total)
Jul 21, 2015 01:02PM SlowDeepBreaths wrote:
Jul 21, 2015 01:43PM sewingnut wrote:
Slow Deep Breaths, I'm on the front end of the 6 months. I will be seeing the lovely mammo tech in December. December 5 yrs ago I was diagnosed and the train left the station to CrazyTown! and yes, I sew....a lot.
Jul 21, 2015 07:53PM SlowDeepBreaths wrote:
I can certainly understand you boarding that train. It's torture having to wait another six months. Come December we will be sending all our good thoughts your way.
My CT scan has been moved to Saturday. My CBC was normal. No answer to why I'm so sleepy all the time.
Jul 21, 2015 08:33PM PoppyK wrote:
Alice is right. Nice post Slow.
Jul 21, 2015 09:18PM SlowDeepBreaths wrote:
How are your boys doing Poppy??
Jul 21, 2015 11:49PM Tomboy wrote:
O man! I am home! Thanks for a new home, SlowDeep! TWO PAGES !!! Sorry, my mom called, then i finished making dinner, then I thought about the lump on the back of my head, then I cleaned up (a little) after dinner, then I thought about my aches and pains, then I watched a little home demolition on HGTV. Then I realized I didn't finish texting you, uh oh... And so, I came here to look: 2 pages! Nothing like home!
Jul 22, 2015 12:13AM PoppyK wrote:
Two of my boys are doing fine. I have a different mix of their friends in my house all of the time. The kids are allowed to spend the night almost any time as long as their parents say it's okay. Jake, a friend of my 16 year old, doesn't have any family around and is an emancipated minor. He is welcome here any time, day or night. He's a great kid. My DH was giving him dating advice during dinner tonight. I don't mind that someone is always visiting because this last year I missed having my kids friends over.
My other son is pretty much the same. He is eating better and his emotions seem less extreme. He did go hang out with his friends last weekend, which was great. We have a family vacation planned. He doesn't want to do anything, but said he would go with us.
Jul 22, 2015 12:54AM Tomboy wrote:
Poppy, that's great! He sounds like he's doing much better! Its a hard stage, for sure.
Jul 22, 2015 01:09AM Suladog wrote:
well, I like what I'm reading here and can totally identify. I'm not in Crazy Town tonight but I'm just driving around the city limits. I was saying to my husband today that 25 yrs ago there were no bc sites, no Lord Google to scare us, I like knowing as much as I can but sometimes ignorance is bliss. There are some boards here that scare the shit out of me, I'm usually up really late but I have to be careful not to scare myself before bed, which is why this seems like a good spac
Jul 22, 2015 05:37AM Lucy55 wrote:
Poppy... Your Hubby sounds like a gem.. giving dating advice ! :-)
Slow.. Thinking of you for Saturday !! I will be so happy for you when you your great results :-)
Suladog.. I know what your mean about the bleak picture Dr Google always portrays.. and yes.. there are threads on this board that frighten me too.. I mostly stick to the feel good threads to make me feel better... Since being diagnosed I tend to baby myself.!!
Tomboy.. Sounds like you've been very busy.. and yes this thread is wonderful.!! You know , I often write a text, and two days latter realize I didn't click on send.! Duh.!! Then I wonder why the other person didn't wrote back.!!
HI to everyone.!!
Jul 22, 2015 12:02PM Tomboy wrote:
Lucy, yeah! I just now sent her the one I wrote last night but didn't send!
OK. Here's the one story. It was during the after surgery part, and I am not sure, I think I must have been bald headed by then, yeah, I think so. But anyway, I was looking in my mouth for some reason, probably because it felt all furry. And you know in the back of your throat it looks like a series of arches? Well, it wasn't there before, at least as far as I could see, but it really took some twisting of my torso and my neck, while pulling the side of my mouth open with my finger, but I saw this beige-ish lumpy bump about the size of the pencil eraser, you know, the ones on the end of the pencil, and so, a wave of fear swept over me. So, I tried to take my other finger from my other hand, to touch it, like that would tell me anything. So, All of this was happening while I was at my treatment center, but I knew that if i told them, they would biopsy it. So I really ended up standing in front of the mirror, with fingers from both hands bristling out of my mouth, while waiting to see bs. I was going o no. Because one of my mom's friends had cancer of the mouth and it wasn't pretty. I was imaging treatment for that. and pretty much told myself it was all over...
So, when I went in to see the BS, I saw her PA first, and i told her what i had seen. she wanted to see, and there was another woman with her. First , they said they couldn't see it, but then I told them how hard it was to spot, because of those fleshy arches. Well, finally they did spot it, and they showed the bS. I was getting pretty worried by this time. They asked if I had rinsed, but I hadn't. They said they think they saw it move. OH GREAT!! What the hell IS it!! Bs rushed in, verdict: a piece of food lodged there...crackers, I HAD eaten crackers. saltines, that suck what little moisture you may have in your mouth, right out. Turning into a gluey crumb, well able to stick to that part of your throat.
But the funny thing also was, i didn't quite believe them, because Bs had biopsied a lump in my neck on that side a few weeks earlier. I was convinced this was all related. I lived with this fear for another while, because i DID try to rinse it out of there, and it wouldn't budge. For days. I was pretty sure my bs wanted me to just go ahead and die n those days, but, eventually that thing did go away.
All of this is written down in my medical record.
Jul 22, 2015 12:47PM SlowDeepBreaths wrote:
Good morning fellow crazies!! Hope everyone is having a pain free day so far.
Tomboy, it is good to have a new home!! I do miss the old one, but it was time to move forward. The great thing about texting is we can do it when we are able. There is never any pressure.
I loved your Crazy Town story!!! hahahahahaha....That is so funny. I wonder if we will always be like this with every little thing that pops up?? I know when I recovered from flesh eating bacteria, it took me such a long time to realize every cut and sore wasn't going to turn into it again. I was such a basket case for such a long time. My poor DH. I didn't have a place like this to let it all out, so he got the brunt of it all.
Poppy, you are a wonderful mom!! You love those boys so much, and I know you would do anything for them. I love how all the boys hang out at your house. I'm glad your son is doing a bit better. Getting him to go on vacation sounds like good progress!!
I really do miss those days. My kids friends are now starting to have families of their own. I love when they visit our house with their babies. Although, it does make me feel pretty old. haha
Suladog, Welcome to this thread!! I'm so glad you found us. I hope you do feel safe here. We will try our best to keep you out of Crazy Town. I lurk on many different threads. I can't really explain the phenomenon of knowing someone through their posts, but I'm sure many of you can relate to it. There are many I've come to love even though I've never interacted with them.
Lucy, thank you for the encouragement!! I currently look like someone with mumps, so I'll be very glad when they figure out why. I do that same thing with texts!! I'll write it and forget to send it. Same thing with emails. hahaha As you already know, I'll even post to the wrong thread, and I'm sure I leave people scratching their heads wondering what the heck I'm talking about.
Jul 22, 2015 01:04PM rleepac wrote:
I have an upcoming ticket to crazy town. I am 1 week PFC and I have several appointments on Aug 6 & 7 for repeat Chest CT, Mammogram (even though I think it's useless since it missed my cancer the first time), and breast MRI prior to surgery on Aug 18. DH is excited because he thinks everything is going to be clear and rosy - but it just makes me nervous. This is a scary place between chemo and surgery - not knowing if/how much chemo made a difference. I know that it probably knocked it out completely but there is this little tiny piece of me that isn't convinced. Then I have decisions to make about Tamoxifen vs BSO and AI or OS and AI. Being highly ER/PR positive, I know I need the hormonal blocking but I don't WANT hormonal blocking. I have found that I like my old friend estrogen and I want it back :(
Crazy town to do list:
1) stock up on Ativan
2) don't listen to my inner antagonist
3) try to be positive
Jul 22, 2015 01:05PM M0mmyof2 wrote:
Also circling the city limits of Crazy town. Waiting on word of when the insurance has approved my upcoming CT Scan. I'm due for it next month as I have to see the MO in Sept. to plan on the next course of action depending on what the results show.
I do have one Crazy town story from when I was going through chemo. It was about the third of six treatments and I was waiting for the bus to take me to treatment and it was the first time my hubby couldn't drop me off because he had to work a half day. His boss had asked him to take the afternoons off the days I had chemo. I knew that we had rain coming that morning, but I figured that I was going to beat the rain and get to the cancer center before it rained as I had forgotten my umbrella at home. Can we say WRONG!!!!!!!!!!!!!! So there I am standing there waiting for the bus when along comes a boom of thunder and the rain comes pouring down. The bus showed up after I had gotten pretty much soaked! At least I dried out a bit before I got to the cancer center, but when the nurses there saw me, they knew I had gotten caught in the rain and got me warmed up as they were doing my bloodwork. So needless to say, everytime I need to go to the cancer center and I know we may get rain, I remember to take my umbrella.
Jul 22, 2015 01:57PM kathy7 wrote:
Slow Deep - so every time I type your screen name all I can thing about is the porn star.........
what was her name ? Deep Throat? Or was that the Nixon burglar? I digress, So pardon, me but I have a visual that you wear a lot of chiffon and have really long finger nails.
Anyhow, I made the journey here.
Questions Slow - this sounds extremely stupid. What is a blog? Is it just posts by one person on one subject and where is it accessed? and who else sees it?
Jul 22, 2015 03:19PM SlowDeepBreaths wrote:
rleepac, Welcome to this thread!! YAY, another CA girl!!
Oh boy can I relate. I think I'm married to the most positive man in the world. Plus I don't think they ever want to think there will ever be any other outcome. I guess I would probably be the same in their shoes. Don't you just hate all of those decisions??? It is mind boggling. I love the list!! Ativan and I got well acquainted while going through treatment. Isn't it amazing how many drugs we take? Then we have to take more drugs to counteract the SE's of the other drugs. I wrote your dates down so we can all send our collective positive thoughts your way when the time comes.
M0mmy, So glad you made it here!! Let us know the date when you can, so we can all be in your pocket. Great story....I will now associate your treatment now with rain. hahaha I bet you'll never forget an umbrella again! We don't get much rain here in So Cal. Pretty soon though we may start needing umbrellas and gas masks for the dust.
hahahahahahahahaha Kathy!! Now I'm forever going to be thinking of that whenever someone leaves off the last word of my name. If you could see me in my ratty pj's and wild uncombed hair, that notion would go right out of your head. LOL Actually friends and family call me Beppy and I had no idea it was a tampon. I came across it one day in an online advertisement. I'm glad you made it here!!Anyone can do a blog online. I originally started it for family and friends to keep them updated on my progress. This way I didn't have to keep repeating my status over and over. Then I decided to make it public for anyone else going through the same thing as me. I often forget when I've had certain tests or what SE's I had during chemo, so it's a good timeline to refer back to. Plus it helped get out all the crazy feelings I was having about this whole process. Most of the things I write never make it to a blog post, but it's still good for me to write it down and get it out. If you're interested in starting one, just send me a PM and I will help you.
Jul 22, 2015 06:28PM rleepac wrote:
The good thing is that I will have all results by the end of the second day of testing so I won't have to wait. I might have to wait for the Tumor Board to meet a few days later to see if rads is in my future but I can handle that as long as I know all the test results.
Jul 22, 2015 07:02PM Beatmon wrote:
Slow deep breathes: I had almost the exact same happen to me....just with a Milk Dud! Cracking me up.
Jul 22, 2015 07:29PM PoppyK wrote:
Just lurking and enjoying reading the posts.
I've found that my brain doesn't work very well after all of these treatments and with all of the meds I now have to take. Often people treat me like I'm nuts or stupid. The dishwasher repair guy who showed up to put in the parts ordered by the first repair guy. He asks me what the first repair guy did and what he said about the dishwasher. HOW SHOULD I KNOW? I can't remember anything any more. Today when I went to my appt with my orthopedist, I had to text my DH at work to find out what I wanted to let the doc know about an insurance issue. May be it's from living in Crazy Town too long.
BTW, I have injured the cartilage behind my knee cap. Physical therapy, knee brace, and more meds. Hope this solves my problem.
Jul 22, 2015 08:40PM SlowDeepBreaths wrote:
rleepac, I'm glad you don't have to wait long for your results. If rads turns out to be in your future, you will get through. The thought of rads was far worse in my mind than it turned out to be.
Beatmom, you give me hope for my sanity!! Welcome to this thread. I hope you stick around!!
Poppy, you're not alone in this. I often feel like my brain has been fried and I have to write everything down or I forget it. Sorry to hear about your knee!! I remember you weren't doing to well when we had our get together. Injured cartliage sounds painful. Hope PT and pain meds help!!
Jul 22, 2015 08:59PM Suladog wrote:
Yes me too! I forgot to add this thread to my favorites.... Doh!
Anyway waaaay back when , 25 yrs ago they told me I had a poor prognosis.. I was Triple Negative back then. I like to know what's going on so I'm not an ostrich and back in '90 my MO steered me very carefully toward encouraging things. It was hard being a young cancer patient back then, and he also knew I'd probably freak out if people around me started dropping like flies, so he got me into a group with other young patients, I was the only breast cancer one, the others had different cancers and then a few of them started to pop off so I got out of that group and into an actual be support group when I was "the baby" but at least everyone was doing good. And they're all still around even the oldest one who's pushing 90 now! She even was in the group because she had a recurrence on her MX scar and was telling everybody she was going to die....she was too mean to die, and so she's still out there and actually that makes me feel good
Jul 22, 2015 09:06PM Suladog wrote:
I once rushed over to my MO at Cedars Sinai because if a big lump behind my ear which I was convinced was brain mets... Turned out my hair band was too tight and causing a dent in my scalp. Boy did I feel like a moron!, then there was the time I got an MRI on my neck because I thought there was a problem, which turned out to be just in my tiny little mind.
Having a 25 yr respite between diagnoses allowed me to move out of CrazyTown for quite a few years but I never sold my Summer house there.
Jul 23, 2015 01:55PM Tomboy wrote:
LOL !! I am pretty much driving leisurely through the outskirts of crazytown most of the time lately. I do have a bump on my left scalp behind my ear, and it feels like there is a starfish pulling on my scalp there. It just feels weird. I told my onc about it last time, he told me to stop wearing earrings. i didn't tell him I only wore earrings for appointments, so I can look like I have my stuff together a little. so, when I told my PCP later that month when I saw him, he said it was an inflamed occipital nerve. Now, I just saw him again a couple of days ago, and told him about it again, with some headaches (hoping they are because of humidity) , he told me I need to tell TX place that I need to see a neurologist. Ok! Maybe later.
Jul 23, 2015 03:48PM SlowDeepBreaths wrote:
Good afternoon ladies. Hope everyone is having a peaceful, pain free day.
"never sold my Summer house" - hahahahaha Suladog!!
I've got a funny story to tell about my MO, but I'll save it for later. Just popping in to say hi.
Hugs to all!! Lurkers too!! :)
Jul 23, 2015 04:45PM tangandchris wrote:
I just remembered something from about a month ago. Crazy-townish
I kept feeling this sore spot on the side of my tongue, every time my tongue would brush against my teeth it hurt. So, after a couple of days I decided to google this and somehow realized that I could possibly have oral cancer. I was in the mirror with my mouth as wide as I could get it to see if I could figure out if there was an actual bump on the side of my tongue or not. It was toward the back and on the side so I was having to contort my head to even get a glance. DH came in the bathroom and looked at me and just shook his head.
I spent the next hour looking up oral cancer signs, symptoms, treatment, survival. YES, it was so fun.
The next morning I woke up and tongue was fine...haven't had soreness since then.
Jul 23, 2015 05:23PM SlowDeepBreaths wrote:
Oh Tang, you must add one piece of equipment to all those contortions!!.... a FLASHLIGHT!! Been there and done that one too!! I was convinced I had tongue cancer. My DH just shakes his head when the flashlight comes out. I'm ashamed to confess I carry one in my purse.
What would we do without humor? I think we just might all go mad!!
Jul 24, 2015 04:26PM Tomboy wrote:
I am watching another woman die from this, and it is fucked up