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mistyk
Posts: 2
Joined: Nov 2000

I have just recently been admitted to this "club" w/Breast cancer. i start chemo next week. I'm not quite certain if I'm scared or not. I really don't know what to expect or how I feel. I have a number of friends and family that all say they are here if I need them, the thing is,
they aren't. My husband takes me to apointments, but when I need to talk, he doesn't listen. I suppose it is too much for him. He is just like everyone else... it's happening to a friend, they can check in, but they're really not there.
Look at me, I'm writing to an empty chat area. There isn't anyone here either. i suppose I just wanted to chat. I'm not much of a writer, but perhaps a journal would work.

loulou
Posts: 66
Joined: Sep 2000

mistyk, Hi this is loulou. You are not alone. You are not on a chat page, you are on a message board page. And there are a lot of women here that know exactly how you are feeling right now. So, you are starting your chemo next week? What kind of chemo will you be having? Don't be afraid of chemo, think of it as one of weapons against the cancer, it's a good thing. Let it do it's job, killing the cancer. Don't be worried about side effects, go into this with the idea you won't have any. Positive thoughts, is another one of your powerful weapons. I think there are others that will agree that positive attitude is crucial. Believe, you are getting better, see it, and feel it. Humor is another weapon, laughter is great medicine, there will be times when you want to cry, instead laugh and have fun with it. Like when your hair is falling out. Take a friend along to a wig shop, and both of you have fun trying on different style wigs. Have fun with it. I also found that I had to have positive family and friends around me, and I had to distance myself from people who were more on the negative side. I noticed after they saw I was doing well, they started to be more positive too. Don't stop living, do the oposite, live just like you did before you were diagnosed. Look at this cancer as a little bump in the road, and it can be a good journey. It's all in how you look at it.. Don't be afraid of being alone, there are a lot of people here that care, and understand what you are going through. Let us know how things are going for you. Love, loulou

murphy
Posts: 45
Joined: Sep 2000

Hi Mistyk, How are you? I read your post and just wanted to say I've been there, you said you start chemo next week, well facing the unknown is always a bit frightening, but my experience with chemo was not all that bad, I had more good days than bad. Once you are past your first one and you know what to expect it does get easier. loulou gave you some really good advice, stay as positive as you can, it really does help and I believe your family and friends take their cue from you, don't be afraid to ask for help, I think sometimes people are so afraid of saying or doing the wrong thing so they keep their distance but let them know you really need them. There really are allot of wonderful ladies on this network who are so willing to be as supportive as you need, I hope you feel free to visit often and post your fears, concerns, share your triumphs big or small, I think you will not feel alone anymore. There were times I felt like you do and I would pray and ask God to comfort me and He NEVER let me down, He really is our constant friend. When did you find out you had breast cancer, did you have surgery of any kind or are you starting with chemo first? I will keep you in my prayers and let us all know how you are doing. When I read the posts on this site, they touch my heart, I don't turn that off with my computer, so many stay in my thoughts and daily prayers, what I am trying to say is you are not alone. All the best for next week. Murphy

tiger
Posts: 292
Joined: Oct 2000

HI Mistyk,this is Tiger, I know exactly how you feel, we all do, and it did not take long for someone to respond to you did it? Once you get to know us,it is great to visit the personal web pages then you can learn our stories,and know that you are not alone.Go through this page and read the messages on there and you will see that we are all together and support one another in a way that friends and family cannot. I have been doing chemo for 11 months now and starting to feel like packing it in, but these ladies brought my spirits back up and I am in the fighting game once again.Positive attitude is everything, if you have a bad day that is ok, because tomorrow is a new and brighter day.Our minds will destroy this stuff they call cancer, but I call it a break from work and a chance to stay at home and be a mom and wife.We will survive and persevere because we are women and we are the strongest creatures God ever put on this green earth. Stay strong and happy,keep in touch with us and fight the good fight!!!!! Big Hug, Tiger xo

cbrze
Posts: 2
Joined: Jan 2001

Thank you all for your wonderful messages. sorry for the name change, it had been awhile, and I couldn't remember how I had signed in originally. I have had 3 chemo, and 1 more to go, at the end of this month. I am excited. but a little distrought as well. I was told there wasn't a way to verify if I still had cancer w/in me. That there is a blood test, but it is very inconclusive if it is the first time around. Result could be elevated for a number of reasons, not just the presence of cancer. Has anyone heard anything about how the canc check to see if it is in your system still? Any information would be greatly appreciated. I am now anticipating 6 weeks of radiation. Any info on what to expect, would be great. Thanks again. Misty

mjdp2's picture
mjdp2
Posts: 142
Joined: Nov 2000

Hi Misty,
The radiation treatments should be much easier on you than the chemo. Your 1st appt. though will require you to lie still on a customized foam pad (for about an hour)so they can measure you very precisely. They might mark you up with markerpens (it tickles!) that will tell them where to give you your tiny dot tattoos during your next appt. You might be a little stiff from laying in that position with one or both hands behind you head so be sure to ask for help in getting up off the table. I wish I had worn pants instead of shorts to that long appt. because I got very cold as they keep the room cool so the machines don't overheat. During the next appt. I got 7 little dot tattoos that are used to help line up the machines. They might not start treatment the 2nd time if new adjustments have to be made. They also might put you thru a CAT machine to measure the depth of you lungs and heart for boost treatments. That was painless. They also took a "Playboy" shot to keep in their medical files (so they don't mix you up with someone else?). The treatments take only a few minutes and you are alone in the room when the machine zaps you but you are able to communicate with the technician thru an intercom. I applied pure aloe vera gel to my skin AFTER each treatment and was able to not get burned. I had 28 regular treatments and 4 boosts in about a 6 week period. Some women feel tired but I did not. You meet some great people in the waiting rooms. Good luck on the rest of your chemo and radiation. Margaret-2yr Stage 2B survivor

tiger
Posts: 292
Joined: Oct 2000

Hey Misty, what sort of cancer do you have? That info would probably help us to better TRY and answer your question. Isn't it a great feeling to know you are at the end of your chemo?! I had my last one three weeks ago, I had 13 since last January,so I am really happy to be done, at least i hope so anyway, I see my onco on Jan 17. let us know what is going on so we can help if possible.
Good luck and take care!
Tiger

cbrze
Posts: 2
Joined: Jan 2001

I have breast cancer, stage II... and to be honest, I don't recall if it was a or b. The size is what brought it to stage 2. I had a lumpectomy, and am having four CA treatments (1 every 3 weeks), plus 6 wks of radiation. My oncologist had mentioned that there isn't a way to verify no more cancer after the chemo. How do people know if they are in remission then? DO they just hope? Any insight, thanks. And thank you for all of the information about radiation. I'm going to try the aloe. :-)

jane38
Posts: 137
Joined: Aug 2000

My radiation oncologist suggested that I take equal parts of zinc ointment and castor oil, mixed together, and coat my radiated breast area with it. I did not have any burning or pain of any kind because I had the mastectomy and had no nerves left in my chest. But it did blister, weep and peel, which is what she had wanted it to do. The zinc and castor oil mixture really did help it to heal faster. You might want to try that too. Jane

mistyk
Posts: 2
Joined: Nov 2000

Wow. I do have only one thing to say. Yuck! Just kidding. Any other side affects? Are you tired? Does it make you sick? I know with chemo I have no taste for about a week afterwards. Anything like this?

cherdaetwyler
Posts: 165
Joined: Dec 2000

misty,
try sucking on icechips during your chemo it really helps keep mouth, taste, tongue
all normal.

the one instruction my radiology nurse had for me was to use only those things
on radiated area that she gave me...but when i said about the castor oil mixture, she
said that sas one of the things they used.
please excise spelling today, my antinausea meds are making me drunk...like a need this/
but I guess it is better than the alternative.
cher

mjdp2's picture
mjdp2
Posts: 142
Joined: Nov 2000

It has been two years since I finished my radiation. I have been on tamoxifen (20mgs daily) since. My followup with both my surgeon and medical oncologists (chemo) are every four months. The chemo doc always gets a sample of my blood at each visit. They look at your blood counts, white, hemoblogin, platelets and also protein levels which means your liver is functioning properly. I also get a mammogram every year. You still have to continue monthly self exams. I was told that lung metastases might be caught if you notice you are coughing? Has anyone experienced this? They can verify lung metastases thru x-ray and Cat. I presume I am in remission but the docs will closely monitor me for another 3 more years.
Margaret

pamtriggs's picture
pamtriggs
Posts: 408
Joined: Sep 2000

Hi there. Pam here. I had BC in 1981 & after radical mastectomy & negative lymph glands was tested by bone scan for 5 years & then pronounced cancer free. BUT I wasn't. Developed cough 18 years later that wouldn't go away but was basically ignored by doctor until I insisited on follow up. X-rays show lung mets & CT and MRI showed bone mets everywhere in spine, ribs, pelvis and legs. Been on Tamoxifen for 4+ months now & all are shrinking except the lung one is being a stubborn beast but we'll get the sucker yet. You just have to get your tests (in New Zealand we have protein marker CA 125 tests which are normal at 20 but go up in the presence of estrogen positive BC - mine were up to 190) Try not to dwell on recurrance too much - hard I know. But live your life as if you truly beleive it has been conquered. There's not a lot you can do if it hasn't but annual tests will soon show any recurrance and then if it does you just have to fight all over again but we can win this fight. We are survivors. Just ask Tiger, Ellen, Nancy, Sue , Cher etc. Praying for you. Love & hugs. Pam

cherdaetwyler
Posts: 165
Joined: Dec 2000

Hi,
I'm cher. bilateral stage III-B (this is the only stage they split so don't worry
about an a or b for yours) , bilateral masectomies in eaarly December, first chemo yesterday, when my onco said that because their are no
met. tumors to watch shrick or go away I won't be able to be pronounced free either.
they are working on blood tests that indicate whether or not is is gone but
none have been approved in US yet that I have read about.
I just assume that I will rout this beast from my life and keep up with all I want to do.
Being on this site helps.
Don't let the doctor's words get you down. I got yelled at for asking if there would be
a need for herceptin somewhere down the road and he told me to cut out the research.

Like this curious brain could quit.
Thanks for joining us. We'll love you and hug you and try to keep your spirits up
but understand when they are down.
My onco nurse feels that I should research all I can. She was really glad I had so
much side effect info and knew about the burnt mouth taste syndrome and came
with my ice chips.. The blood tech offered coffee at that same point but I stuck to my chips.
Prayers and hugs, cher

julies0816
Posts: 16
Joined: Nov 2000

hi cbrz
i had stage III. I guess there are actual blood tests for breast ca but my oncologist says that they have a history of producing false positive results. so he says I will be checked every 3 months by him and have regualr bllod test checking liver and kidney and blood count levels. I asked him so I wait for it to come back and He said no you wait for it NOT to come back. Good luck julie

jane38
Posts: 137
Joined: Aug 2000

Hello, I just read your post and the responses to it. They are right. A positive attitude helps tremendously. This is a very scary time in your life, probably the most frightening thing you have ever encountered. It was for me. But I did it. I had the surgery, I had eight cycles of chemo and six weeks of radiation therapy. I am a better person for it. Talk to your friends. They will be there for you. Right now, they don't know what to say, how you are going to react to what they say. They are so afraid of upsetting you even more. Trust your instincts. My civics teacher from high school many many many moons ago taught me that your first instinct is 99% correct. So run with it. All of the ladies on this site are absolutely wonderful. You can post a question, a feeling, or just a comment, and it doesn't take long before there is a response. Give us your fears. Let us help you with our own experiences. We have been there, and some of us are still there, so we know. We truly know. And yes, a journal is a very good idea. I kept one, because in my journal I could put down my very private thoughts and fears, the ones I could not express to anyone else. It really helps. I read mine every now and then, it brings a tear to my eye, but I want to remember. I want to remember how it was so I can continue to fight. It is women like us who will eventually come up with the right idea for the researchers to find the cure. Welcome to our "club". Come to visit us often. Jane

jackies
Posts: 30
Joined: Sep 2000

Hi Misty. Welcome to our circle. Most of us can truly empathasize with where you are and what you're feeling. Although most of us have battled with fear, depression, frustration (especially during the first few weeks after diagnosis), the majority of us will tell you that most of the emotional frenzy you may be dealing with will eventually subside. Don't be afraid to let your husband, close friends, or family know that you will have times when you just need a listening ear--someone who will be there to hear your fears and frustrations. If your husband is anything like mine, it sometimes seemed to me that he wasn't really empathizing with what I was going thru. However, once I actually discussed it with him, I realized that he cared so much, he was nearly overwhelmed with the need to try to "fix" this crisis. But he can't. Only God and medical science can. But one thing we've all come to realize here is, there's no "quick fix" for breast cancer. Most treatment programs take months to complete. For the time being, try to look at life from a day-to-day or week-to-week perspective. That's the easiest way to get thru chemo, radiation, and surgery. By the way, I'm a living testimony as to the miracles possible with chemo. I had a 3x4cm tumor and 2 swollen lymph nodes. After 4 chemo treatments, they all appear to be gone! I have 3 more treatments (with Taxotere to go). What treatment program are you on? How old are you? I'm 42 and have a husband and 2 teenagers. Please know that if you join our circle, we'll be here to support, encourage, and pray for you. Remember, medical science has so much to offer, and God and all of us will walk this difficult road with you! Keep in touch! Jackie

nancys
Posts: 336
Joined: Aug 2000

Mistyk, You are not alone anymore. I know the feeling you speak about. My husband was also very removed from "my" cancer. and still is to some extent. He is a wonderful man, will run errands for me, rub my back, rent me movies,cook meals, run the sweeper, but when it comes to the cancer.... That is another story. He will not learn to pronounce the words, never gets the treatment schedule right, asks me the same question over and over until I nearly scream inside. He is a very intelligent man but he treats this cancer like he is too dumb to understand it. I think he just wants it to go away and if he refuses to learn about it, then it is not real.It is not really happening to us. I sat him down at the kitchen table one day and just poured my heart out to him and told him that he is my caregiver and I need him to be well informed about my treatment in case I am unable to speak for myself. He promised to do better and he has done a little better. This cancer Survivors network has kept me sane. I get on this site and pour my feelings to others, women just like myself and just like you. We share the good experiences and the bad ones, and we learn something from each written word between one another. We pray for one another and we send cards to one another. I have formed several very close friendships with women I have never met but admire and love like a member of my own family. Come join us and be part of our family.Your new Friend, Nancy

sueholm's picture
sueholm
Posts: 221
Joined: Oct 2000

Hi there, this is susan, and it looks as if you and i are at exactly the same stage in our figth with breast cancer. i start chemo tomorrow, four rounds, every three weeks, for lobular carcinoma of the right breast. did you have surgery. i had a partial mastectomy, and thought all was clear, but found out friday there is another area of cancer, so after the chemo, which docs dont want to delay, i have to have afull mastectomy. threw me for a loop for about 24 hrs, cos thought margins were clear so i was ok, but i am getting used to the idea now. i found the lump sept 20. and i knew, i just knew it was cancer. i am 55 and have four grown children. you sound younger than i, but that doen't matter. we are all human and have the same fears. i got those expensive pills to hopefully stop me puking from the chemo. i will let you know if they work! i hope you will come back to this site. i check it every day, and always enjoy reading all the postings. you will find that the women here are very knowledgeable about their cancer and their treatment, as i am also trying to be, so son't be afraid to ask any questions at all. one of us will likley know the answer, maybe even two! take care, and if you promise not to puke, so will I, bye for now, susan

pamtriggs's picture
pamtriggs
Posts: 408
Joined: Sep 2000

Hi MistyK
No you are not alone - not on this site. I have found everyone to always be there for me. My husband too reacted as did yours at first. It's the "men are form Mars" syndrome. They want to fix it and they can't so they pretend it isn't hapening or they get so into "doing something" that they don't listen. Try telling him how you feel. Or get him to read some of the support on this site. My husband is now OK and listens well & now he knows not to say anything but just to hold me & cry with me when that is what I need. On this site we all cry but what is so wonderful is that everyone really cares & knows how we feel. Write anytime.

I pray for you

Pam

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