Starting Chemo September 2015; join us!
Comments
-
With my androgenetic alopecia (hereditary hair loss), after chemo and with taking tamox or another drug, I will have no hair. I like many of you worry more about my hair coming back and what it looks like---well, that's out for me. I still have nice hair so I haven't done the buzz yet esp knowing that that'll be it until my next lifetime of having my own hair up there.
0 -
Oh man...the fur-covered tongue has decided to make a reappearance. How could I have forgotten??? Ugh
0 -
Skittle, that's a brilliant idea!!!!
Thank you all. And I forgot to update that the transvaginal ultrasound turned out fine. Of course, there was chaos getting there as I hit a major traffic snag in the middle of the afternoon, called 15 minutes before the appointment to warn that my GPS was saying 33 minutes (when I should have been about 5), and was told curtly that "there is no grace period for ultrasounds". Normally I'm a composed person, but I burst into tears and explained that this wasn't to look at my baby; this was to find out if I had another cancer and I couldn't wait another month to find out. She got even snottier when she said, "Oh, it's with Dr. KALICH. Yeah, there's no grace period here." It all worked out over the next 20 minutes when the triage nurse saw my notes, spoke with the tech and the doctor. The tech and the doctor, when I got there, both said, "Oh goodness. Of course we'll make something work here. We're very accommodating." Yes, but Courtney at the front desk isn't.
Granted, this was a couple of hours after hubby got the message on Russian Facebook from our girl that "I can't come for Christmas... I just don't want to". So not a good day all around.
That cruise we're joking about is sounding better and better.
0 -
Artista I have read in more than one place that your stem cells for hair can reset. You might get Jessica Rabbit hair back after chemo. Have some hope! It's all that's keeping me going!
0 -
Wait, who said it was a joke? I'm in!
0 -
Amy thank goodness you knew something was wrong and persisted in it. How crappy that it is a dvt but lucky it was found before anymore time had passed. As far as the warrior thing I agree with the wanna slap the people that don't know me from squat telling me that. Sometimes you just want people to tell you it sucks and sucks the suckyness.
0 -
I've stopped taking crap from unhappy Healthcare workers. I have cancer I have no time for your shit. That grumpy nurse that busted every vein in my arm tried to be my infusion nurse again last week. I said excuse me but we aren't compatible. They switched quick. My life is shortened so I have no time for attitude and bull crap.
0 -
Taco Bell, the natural laxative...
0 -
Annie, yeah I've heard of it. Not sure it'd work with genetic hair loss pattern. I was doomed but had many years (looking at my mom...) but this has made it to bye bye in a month or so. Also, it's not covered by insurance and it's very pricey esp cuz it's new.
I just hope the meds don't kill eyebrows and eyelashes permanently as well. Forgot to ask MO. I would be just kill me now if I lose those too. WTF? I'm only 51. If I were a lot older, then who cares.
0 -
Taco Bell = Taco Hell for me unless I have a lot of sour cream! lol
0 -
OMG on these crabby caregivers/front desk people. This is CANCER. If you aren't empathetic/sympathetic and truly caring, get in another field of health care- or maybe get out of it. Jeebus!
The lead front desk lady at bs office can be on and off. Kinda can start playing doc with me evaluating and giving her opinion if something is indeed wrong or not. Um. I was a sx coordinator for a sxs office for 10 years at a very busy practice. The surg taught me a ton of medical stuff so I could answer basic questions myself, but when it came to possible issues, you DO NOT venture your "expert" opinion. It goes to the nurse/PA/doc. That's it. I don't even want an MA telling me what it is.
Good on you Annie for saying you aren't compatible with that vein blower who blows. My God. I still have some swelling in my hand from over 2 weeks ago when I had a few blown veins from incompetent nurses who flunked to IV insertion part of their training.
0 -
Wow, Amy. So sorry to hear. But yeah, ANYTHING that looks off you need to call in. The chemo teach nurse said don't sit and wait and see or worry about bothering someone---you aren't. You never know if it isn't a concern until you call. And if it isn't, relief but they'll thank you for calling in case and so will you.
Like I said somewhere here I think, I've caught a couple mistakes in the hospital chart. Not biggies but none the less. You have to stay on top of you, whether what their notes say (sign up for the online chart so you can see it) or get copies to review and keep for yourself at home) or what they've said that you've jotted down). One ex is I jotted down dressing over picc line needs to be changed every 7 days. On the 6th day I got word that my abx IV was being extended which would make it a total of 10. Had I not jotted down what I was told, it went past my ps and even infection doc. I called myself the home care nurse and she said yes, and came out the next night on day 7 to change it for the 3 days I had left to go.
I don't rely on providers soley. I write stuff down all the time just in case, and call them on it if something's off. I love when I get the you're right....well kind of... if would be nice if I didn't have to write everything down but esp with fog coming up with chemo, I'm glad that's a habit I have: Notebook and pen in hand when I'm around providers! lol
0 -
Southern: If that doesn't make you go, you'd be the first person I know! lol. Good luck, and yes I love taco bell too.
0 -
I promise that when this is all said and done, if I ever have the chance to help someone find their way on this crappy BC journey, I will do it with love and respect. Some people are so obnoxious! One of my mom's friends is going off on me right now because I ignored her advice to seek out a second opinion from Cancer Treatment Centers of America. Seriously lady? You told me I'd have to be gone for a month at a time. From my babies. That's NOT happening. I'm happy with my plan, now back the eff off
0 -
Yeah , I had someone telling me I needed to go to a bigger city for treatment. Yeah, not happening. We have a good cancer center here that is associated with the big city cancer care center. I will go to the big city for plastic surgery when we get there, but my own surgeon is recommending it.
0 -
I had a relative tell me that none of the docs in my region could be trusted and I should travel to the teaching hospital he is at, a good three and a half hours away with no traffic. He is a doc, but NOT an MO or in anyway involved in cancer treatment. Just says he doesn't trust 'small town docs' (even though my MO is NOT in a small town. It is a real city. and an hour away from me as it is.) NOT happening to have to drive almost four hours each way for chemo. Yeah, wish folks would just back off. Not their business, and not helpful.
0 -
^^ ^^ And that's why only my bro and 2 bff's know about me. Oh hell no. My fam has a degree in everything and know everything. Dad is the exception as is my bro but I don't tell dad because he would literally have a heart attack or massive anxiety attack and I love him too much for that. Plus he'd spill to my mom and word would reach Iran and everyone and their mother would know and have advice and such to give. No way. I'd rather die alone than that. At least bro is cool and just gives his ear and support.
0 -
The bathroom fan stops working. My husband comes out and says Damn that chemo is really strong stuff!
Har har yuck it up mister, yuck it up.
0 -
i thought cancer centers of america only treated terminal and unusual cancers?
0 -
No they want everyone to go there. I see the ad all the time. I never considered it because I live around the corner from all my providers who are great and the hospital.
0 -
And you can smell the chemicals when you are on the potty?? Oh no! Def going to keep on top of anti nausea meds.
0 -
Southern, thanks for the post from your daughter. I worry about my daughter. She's 13. she gets it, she's been so good trough all of this, but I worry about her, what does the future hold for her. My parents separated when I was three months old so I don't have any information from my biological father side of the family. I am going to speak to my MO about it this Thursday and try to get some advice. My Mom's entire family are healthy with no hx of breast cancer.
0 -
CTCA is a for profit entity (hence all the ads, although in fairness I've been seeing lots of ads for Stanford lately, and they are a non-profit entity)...and CTCA has seen its share of controversy. Wikipedia outlines some of the issues.
Octogirl
0 -
I wouldn't send my enemy if I had any to Stanford. The care over there is crap! Unless the cancer center is different, lost grandparents due to oops on their part and heard of others who have as well. Fantastic school but the hospital, no way.
0 -
hi everyone,
I haven't posted recently but just read through your latest posts. You are all in my thoughts and I hope your SE's are easing up!
My second treatment was last Mon and I did a better job of managing the nausea. I'm a little more tired and do not have that surge of energy that hit on Day 6 last time. I actually am doing pretty good. My daughter and 6 month old granddaughter are here from NYC for a few days, so that's the best medicine of all!
Bad news is that head hair all fell out a few days ago and it sucks! I have always had very short hair and it was still traumatic. My heart goes out to all of you who have (had) long hair. It really is the ultimate insult of having BC. You kind of think you are handling the SE's and then the hair jumps ship....and you feel like you look like shit. I think I need to shave it closer because it is really spotty looking!
Annie - I hope your bone pain is better! I have been lucky - no bone pain but I've taken Claritin and Aleve regularly the first few days after Neulasta.
And all of you dealing with kids - you are in my thoughts. My adult kids seem to be doing fine with all of this. They have busy lives and I don't think I'm on their minds too much, which is good. My hubs has been my rock!
Here's to a good week for all! Hang in there....BTW - I used to like the color pink, but I'm kinda of sick of it right now!
0 -
Aaaand, I felt awful, took Tylenol (since I can't take ibuprofen anymore as it's an anticoagulant), and still felt lousy and feverish a couple of hours later. Took the temp: 100.3. Dammit. Had to call the after-hours nurse, which I HATE doing. She called the doc, who sent me to the ER. So here I am.
I got to this room well over an hour ago and while I appreciate the fact that they triaged me and brought me right back to a room, no one has been in since bringing me in except the registration clerk. I'll be here all night. And my poor BFF is having kittens over the fact that I'm here while hubby is at home. He didn't offer (though did ask if I wanted my mother to come--NO!), but it makes more sense for everyone to get sleep unless this turns into something.
Anyone else still awake?
0 -
oh that stinks about having to get lab work in the vein when you have a port. I have to do that too and I resent it even though I am not dealing with pain and blown veins like you.
0 -
CarolinaAmy, OMG just read about your neck DVT. I hope by the time you see this the ER docs have finally "noticed" you're there and are making you better---- if not, they should be shot, your post was two hoursago. Keeping you in my prayers all day (already late morning here) (((((hugs)))))
I'm with Arista, ladies please don't all jump ship from here to Facebook...
Aggie, the chemo I'm getting here in Finland seems to be a bit behind what US ladies are getting for their HER2 BCs (Perjeta also with Herceptin), but I just don't have the energy to try for second or third opinions. The hospital here is a 20-minute drive away, the larger cancer centers at least 5 hrs by car ---- not gonna happen...
AnnieB43 your "pube head" comment sent my morning coffee spraying onto my iPad ---- I should know better by now to not read with my mouth full.
Grey, if you're still reading these group posts, I'm keeping you in my prayers, too.
Heck, I'm keeping everybody in this group in my prayers ---- you ladies are keeping me sane through this nightmare ((((hugs))))
0 -
I traveled a long way to a major cancer center for more biopsies and surgery. The general surgeon who does a lot of the breast cases(supposedly) and I didn't connect at all. I was pretty (self) educated by the time I got to her with the exception of the genetics part. She made it sound like it was almost certain I had a BRCA mutation because of my age. I don't have one or any of the mutations they know about. I have bad experiences with local doctors. If I could I would get chemo at the place where I did my surgery. Honestly I would love to fire the local doctors and fly to the next closest city each is 360 miles away.
0 -
I'm waiting for the official call time for the hospital physical therapist to ask (beg) for help with my lymfedema. Lucky the "crisi" Sar. When I woke up and couldn't use my right hand for hours happened when husbnad was home and could help. Yesterday my long-rather-quiet left arm pain from squashed nerves in my neck acted up so bad, I couldn't sleep until almost 5AM even with turbo pain meds --- no comfortable position for my neck
I'm a bit surprised I can still think sort of lucidly after only 3 hrs sleep, maybe chemo brain will give me a break today while everything else is going to h*ll. Sent emails to my oncology support nurse and my pain clinic neurologist when I couldn't sleep; that second was maybe a bit on the hysterically afraid side, but too late to unsend; call time with her is tomorrow.Husband is finally a bit more supportive, fed and peed our dog while I was still sleeping this morning (I left a note).
There are a few threads here intended for Stage 4 ladies, but which are full of hopeful posts that give me strength when I read through them --- anyone else here having dark days might want to check them out maybe...
0
