February 2012 Chemo
Comments
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i have to clarify about the look good feel better thing--i did NOT expect to receive a wig or even a scarf--i got the red bag and some cosmetics and i realize that they are all donated or whatever-
the gal who did my program is awesome- knows her stuff and has been doing this since it started- the group of participants was mixed in age and they really were dull and boring ppl-- sorry! gotta be honest!
one of my disappointments was the fact that the bags were not packed well- the facilitator had a very difficult time because they were all so different- and didn't really contain what even she thought they should-
she wanted to share scarf stuff and wig info-the gal who woks with her didn't come and she herself was not prepared well for it---as she is talking about using a t shirt to wrap your head she finds that she has the top of the t that was cut but not the bottom.... little things that were wrong....
she did suggest that we go to her shop to the wig closet and she also offered to trim any of our wigs etc...
my disappointment was more because i have done retail as well as home party sales and sold makeup and also have been a trainer, so i was looking at what was going wrong with different eyes than many would--it was hard for her to talk about what we should use if she expected there to be mositurizer in the bags and there wasn't , etc.....one lady had no lipstick at all in her bag another had two mascaras ..... i got a "light" bag for my skintype as did 3 of the other gals there- we all got those stupid little sample single use things (you know the flat thing with the cream in it or whatever--words are failing me!) for cleanser-whooppee...
sorry- i definitely think the program is wonderful and have watched it grow- i am grateful for the evening out, the products and the time and energy our facilitator gave but i was disappointed......
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I have to add to lumpynme's post - my disappointment was nearly identical. I did not expect a wig or scarf either. I've heard too many good things about the LGFB sessions to think this was anything but an outlier.
We also got the bags with makeup, didn't even attempt to look at what was inside while in the class. The lady that was there to demo the scarf tying/wig wearing did give some very useful info, and it was good.
There was just virtually no interaction between the participants, and it was a pretty small group - only a total of 7. Just wasn't the uplifting experience I was expecting.
Karon
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Hi everyone old and new, thanks for kinds words it really helps. Well yesterday I had the doctor out again and he gave me Tramadol and said if it didn't work to try the hard stuff. I was very down because of the pain and I think my family have had enough of me suffering. I also got another shot in my tummy so also had pain from that. I took the tablets and by 10.30pm the pain was easier and I could get up and watch tv. Feeling a bit happier I go to bed and think I might get a few hours sleep. Get undressed and my port has started to bleed and I'm thinking what else can happen. So the district nurse wouldn't come out because it was bleeding and I had to call the hospital again. Anyway the hospital told the district nurse to come see me and she arrived at 1am by now I'm a zombie from no sleep since Sunday. So today I'm waiting for another district nurse to flush the port.
Someone asked about the cold cap, yes they do work but you lose a lot so a wig or hat is needed for me anyway. Also the thinner your hair the more it hurts.0 -
Lumynme and Khintul
That's a shame that you were disappointed. I guess it really depends on whoever the volunteers are running your class and of course the level of enthusiasm of the attendees. I'm in sales too and like to get the conversation going where ever I am. Part of my nature and likely part of all us here which is why we're so comfortable talking here. The gals running it were low key though, and now I wonder if its part of their training because we have the big "C". I never did ask if any of them had been through it. I wasn't really disappointed but was hopeful for a freebie wig LOL!! Only because my DH's Aunt got one. But like I said she lives in a different province that where other than St. John's the capital, its kind of rurual/ small town feel. Its alot different "Down East" as we say. Whereas the larger cities ie Montreal, Toronto, Calgary, Vancouver are large cities and a lot more impersonal.
Ali
Tramadol was what I was given after my MX surgery, works well. I'm sure your family is worried sick, its harder I think to see someone else suffer. At least the nurse was told to come out. Wouldn't see that in Canada on an emergency basis at all that I know of anyway! We can get home visits for surgery recovery etc but it's farmed out to a private agency even though its paid for my Health Care. While I'm grateful for universal health care, it does have it's pitfalls sometimes. I hear France is the best of the lot when it comes to it. Did you ever find out if you can get Clariton 24 Hour in the UK? I noticed a 100% improvement in the back pain this TX vs the 1st one. I've only taken 1 percocet vs about 20 last time. If you can get it please try it!!!
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dltnhm: Thanks for the warm welcome! Great smile on your pic!
Ali68: So sorry you have to go through this pain along with your port issues. Hope things get easier for you.
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Welcome Miniwheat! Everyone is family here it seems
Ali I sure hope you get better soon!!
Gritgirl- how are you doing been thinking about you?
Today I go in for my 8th herceptin.. granted this is an easy one compared to getting the TC, just in a bleh mood where I dont feel like getting poked again! Today I have an appt with a genetic counselor too. They will be testing the BRCA1 and 2 genes but hear it takes awhile to find out. Send any extra prayers my way that its negative please. Defintely dont want to risk passing anything on to the kids if i can help it. Plus it would mean i would need to get a hysterectomy too. That along with menopause never thought id deal with at 38 but none of us thought we would be where we are.
Speaking of kids.. my daughter finally saw me without a hat or wig on last night. She told me she thought she could handle it and she did well. It was only for a short bit and then she said ok. My son who is 6 said.. I saw you and I didnt laugh so its ok now too. ( he still is in the stage where everything is funny) So that went better than we had all expected. baby steps
I havent gone to one of our local support groups yet. Its usually on Thurs at 6 and I rather spend that time with my family. But going to try it out tonight I think. Just been very hesitant to do anything outside of this group forum here. Going to take a deep breath and dive in to say I tried it.
Wishing everyone a beautiful day with no pain and minimal SE.s
Jen
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I have more energy today, thank goodness. Having that cold really kicked the bejeebus out of me.
I'm thinking of going to a barber shop this weekend to have them even out my stubble and take it down as far as it'll go so I can go bald. It is humid here in Washington, DC which is normal but early for this area. Even the cotton scarves feel too much. I can't stand to feel overheated.
I'm perturbed about the wigs. I bought from one of those places that sell to cancer patients and afterwards figured out they did a hell of a mark up. Then my insurance company only covered half. Grateful to get any of the money back, but the wig my sister bought me from paulayoung.com was just as good and a heck of a lot cheaper. What a racket.
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gritgirl
I feel the same way about the wig racket. So glad I didn't end up paying $500 for something I don't like or want to wear in the heat vs $75. I am going to look for another though that's thinner and shorter and mabey a "face framer" and a couple of cotton hats to put on top. This way I will have spent about $300 I figure and that's how much insurance covers. I think the cancer wig shops really see us coming and play on our emotions.
Glad your feeling a wee bit better too.
Jen
Now that you're on Herceptin only, do you find the hair is coming in at all? Nice to see the kids are getting there head around the bald thing. I've only been bald in front of my DH and my sister so far (no kids). When I'm alone though it all bald, way more comfortable!!!
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MLB I wish I was only on Herceptin! I must have mistyped.. I claim chemo brain! I have 6 total TCH treatements and have only done 3 so far.. but Im half way done! I do the herceptin every week.. I kinda feel like the old Dunkin Donuts commercial if you know what I am talking about. " time to make the donuts" time to go get infusion... hehe
For those who have lost their hair.. are you buzzed short or did you completely shave it smooth? I am cutt really short but thinking the smooth route might not be a bad way to go. all these little hairs are annoying. thoughts?
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Hey Jen
Sorry I mis-understood. Its so hard to keep track of everyone's TX. I get #3 next Friday, can effing wait for the last TCH. Then it's H only every 3 weeks until I guess Jan/13. I had my HD buzz what was left me my hair 2 1/2 weeks ago. Of course there was stubble and it felt like sandpaper. What's left of the stubble though I think has grown a little bit, much softer to touch and hanging in there? Weird eh. As much as I hate being bald, it was worse having it patchy and just plain feeling gross.
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JenH13: We chose to have a head shaving party, before I started chemo. I just didn't want to deal with that whole losing clumps of hair experience. I had fairly long hair. so my brother showed up with the head shaving gear and rounded up my son, stepdaughter and husband and we tried to make it as lighted hearted as we could for the kids. My five year old's reaction was you look weird mom, my 14 year old step daughter said you rock! My husband candidly wiped a few tears and my brother said sorry. It was kind of drastic but personally, I'm happy we did it that way. I wear lots of hats in public but the family is now used to it and we joke about my puny egg-head.
At first we buzzed it, then when it started shedding I shaved it smooth. I did read somewhere after that it shouldn't be shaved to the skin, but (chemo-brain) I can't remember why not... I'll try and find out.
Carol
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Wigs/hair - I live in Davenport Iowa and there isn't an ACS here and the one across the river in Illinois wouldn't help me because it's Illinois. We have one wig shop (a good one) and they used to give free wigs but now they do give $100 off through the Susan G. Komen foundation. I got a really nice wig for $219, monofilamnet style so it is cooler to wear. It's family owned and they were great. I even ordered Abby caps to wear at home and they charge less than they were on line at Turbans Plus. On the shaving thing - I had my husband shave the nubs off bald cause they were like sandpaper and drove me nuts, it does feel better. The most help I found here is through the Gilda's Club, a lot of it came after the fact but I was dissappointed at the ACS and the lack of help here since I live in a tri-state area. I didn't bother with LGFB because I used to do hair and makeup and i figured it wouldn't be worth going to.
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So here is my secret for how I am handling those little stubbies on my head. as you all know I shaved it down with a 1 and it was very GI Jane but it was finding all the little hairs on the pillow that made me do this......i bought a very small lint roller for $1.00 the one with the tape and now I just roll my head every night. Had my little niece do it the other night, she thought it was the height of funny. Head never hurts and no more little hairs everywhere. Especially easy before I shower so no wet hair around.
(((Hugs)))
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Lumpynme - That is a shame about your program. I went to one at a local hospital and they had wigs and we got a bag stuffed with full size cosmetics. There weren't any scarves but we got a terry cloth turban and a comb to use with the wig. The wigs weren't that high quality but for someone who can't afford one it would be fine. It was a very small group when I went, only 3 other women were there. The presenters were nice but pretty much reading from the makeup book.
Gayle
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Day 7 post chemo(2nd round) the worst!!! I was not expecting this. 1st round days 3-5 were bad. It is so frustrating not knowing what to expect. Anyone else experience the same? My ONC also said to get TE fills only on day before or after next chemo since blood counts low. Anyone told the same? I am worried now. I haven't had a fill since sx. Last time delayed because of tightness and pain. Now I got that under control with therapy and now this.
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What the heck is a TE fill?
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Tissue expander fill. It's what they put in your chest/ under pec muscles before the implants. Can't have the permanent implant until chemo done. They fill the TE every couple of weeks until you reach the desired size. Has not been the most comfortable experience.
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Oh, got it. I am pre surgery. Hoping to have a tramflap or diep reconstruction, depending on what they have to do. Surgery will depend on what they find on scan. I would love to be able to say certain things will happen for sure, but I ain't got no control over it, which is annoying. Such is life.
Hope everyone out there is doing ok.
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Msbelle
Thanks for the feedback on the TE's. I had surgery first, then chemo so will be researching reconstruction options down the road. I first though the DEIP would be good but I don't know if I want the additional surgery, so was leaning towards TE/Implant. Still don't know yet though.
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I thought DIEP was a one shot surgery. I am leaning that way because it uses my own body fat to do the reconstruction and because the expanders can infect and require another surgery after the expansion is done. That's what I heard. Hmmm.
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Just found a link on cancer.org explaining it all
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gritgirl
I know what you mean. I'm just thinking a tummy tuck/donor site, new boob surgery and a lift to the other side. Yikes! I know a TE gets put in and filled then switched out at which point I can either have the other side match. Still undecided but more research required. Takes me forever to make up my mind. That's the Libra in me I suspect LOL!
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Well, I'm a Libra too, and I make decisions pretty fast. Must be my Myers Brigg Type that is getting me there. ENFJ.
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Greetings everyone. I hope things are going well. I'm well, just run out of steam a little earlier than I am used to. This week I had a patient in who had BC treated in the 1980s, had a mastectomy and 9 months of chemo. She is 53 now, so she was young at diagnosis. She is doing quite well, no recurrences, no problems. And I have another patient who is a new diagnosis. She had her lumpectomy yesterday, and SNB is negative (final not yet back).
Again, I appreciate each of you, and your comments here.
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One more thing. I had a meeting with my RO, and we have settled on doing no RT. So once I wrap up my chemo, its on to 5 years of Vitamin T.
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firstcall
Thanks for sharing your survivor stories, makes my day. I am to meet again with my RO after chemo but am really on the fence. Presently I'm leaning toward no RADS for a 5% better chance of no reoccurance. Still have to have the chat though and let her show me the goods on why she feels is warranted with my pathology. I wish I could say inconclusivly once chemo is done I will only have to do Herceptin then the 5 year program. I know you can't give me your opinion and I wouldn't dream of asking. Will you share what was the leading indicator in your decision making?
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Jag1110,
When you mentioned Gilda's Club it jogged my memory...when I was pregnant with my first son(he's 25 now) I lived in NYC. I went to a routine OB visit and everyone in the office was laughing like crazy. I asked the receptionist if they were having a party and she said no, Gilda Radner is a patient here and she always gets us laughing! I haven't thought of that in years! I know that story has nothing to do with what's going on now, but thanks for a happy memory!
I also have tissue expanders and the surgery to replace them with implants is supposed to be a very minor surgery. I was originally going to do the DIEP, but after the double mastectomy, I changed my mind. I had never had surgery before(not even episiotomy with my 3 kids) and it knocked me for a loop! I was told that the DIEP was a bigger surgery and was a longer recovery time and that was it for me(scaredy cat). Definitely do research and talk to all of your doctors about it.
Ali, so sorry you are having such a bad time! I hope things start to go smoother for you!
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Anyone else getting hot flashes in the middle of the night? I am woken up 1-2 times EVERY night with one. Goes away after a few minutes. Doesn't happen any other time. What causes that?
Dreading tx #3 Monday. Fearful of worse SEs. Trying to not think about too much so I don't make myself experience SEs just from thinking about them.
Busy weekend planned - gotta clean house Saturday, pick out tile for the bathroom (DH gutted our only bathroom right before I got dx'ed - what timing), and I am working Sunday to make up for taking Monday off for treatment.
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http://www.1uponcancer.com/2011/09/08/douse-the-hot-flash/#more-4086
this looked helpful on hot flashes0 -
YES...hot flashes every night. I sleep with a wet rag on night stand and slap it on my bald head when they wake me up. Instant cooling! I also have them during the day. Thinking about putting a squirt bottle in purse. Thanks gritgirl I'll look this site up!
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