I'm bitchy, I moan, I groan.....anyway.

Jane_M

How do I get my family/friends to understand that there is such a thing as post-chemo/radiation fatigue.  They think I'm nuts/lazy because I can't/don't do anything.  Friday night I went to bed at 5:30 PM and slept until Saturday at 9:00 AM and still wasn't rested.  They seem to think that the SEs are gone as soon as treatment is done and I feel like a malingerer when I tell them I still don't feel 100%

Anonymous

Angel, ymb, I feel you sister.  I hear you without words with great gratitude and humility for being allowed to speak with your spirit and for yours to speak to mine.

Awwww, PatMom.  I first heard about "stream of consciousness" and read Kafka in high school.  I didn't think I'd be caught doing it.  Still, no matter what I'm saying, for it to come out right, I have to bring it up from my heart.  Thank you for saying that my stream is worth wading through to get to the other side.  (smile)  (smile smile)

No one has PM'ed me to say, "knock off the religion/faith or I will get you kicked off the boards," and for that, I thank you.  Thank you, ladies for being tolerant in the real and true meaning of the word.

Anonymous

Jane_M,

If they will listen to you, as some people are not ready to hear or listen, tell them that the medical, mental, physical, social, and psychological battle to fight cancer is a lot like going to war in another country.

{Skip to last paragraph of this post for summary answer.  Thank you.}

Ask them to think about Viet Nam veterans and those today with Post Traumatic Stress Syndrome.  It is difficult for a brave soldier to ask for help, to admit he feels despair, hopelessness, and doesn't have the reality that he used to anymore about the world.  Tell them that unless you have had something shooting at you trying to kill you, you really don't understand what it feels like.

When someone from the medical profession says, "I have run the tests, this could kill you, you could die," it pulls a rug out from under your feet and leaves you on a slippery waxed floor.

The next move depends upon the tests, your reaction, the size of the tumor, the standard of treatment for your particulars, and what you can tolerate given the state of your body's total health.  They are going to cut, stick, poke, prod, and reduce you to numbers.  Sometimes, some of them are going to be mean about it.  There are cruel/excellent medical professionals all around the world. 

IF you don't know yourself and your body in wellness, you are at a disadvantage.  Your standard of "even keel" or "normal" is about to change.  Your energy is sapped.  Your immune system is compromised.  Your vitamin and mineral level has been drained.  You may be or may have been depressed, tired of fighting the disease - tired of feeling so alone against this unseen thing inside your body that didn't even buy you dinner.  (I'm sorry.  Some of you understand, others, just cluck your tongues and forgive that one.)

Tell them that if you get hit by a car or crash in the hospital, they don't administer the paddles, get your heart going, and then tell you to get off the table and go back to work.  ... 'Don't cry, you're fine.  Go on now, shoo, shoo!'

Tell them that they haven't walked this road with you every step, and that if you don't minimize their pain, distress, and trials, then you would hope that they would extend the same courtesy and honor towards you.

A woman that gives birth and gets up too soon can drop dead.  She has endured a great drain upon her total being.

A chihuahua dog doesn't have a strong heart.  For all its yapping, if you yell and stomp your foot at an older one, you could shock it into death.

Then again, your post sounds like your surrounding group is pretty insensitive and not used to enduring hardships with grace, dignity, strength, character, and compassion.

Don't you feel like a malingerer, because being hard on yourself will not help you.

Hmmm. Okay.  If there are stand-outs who are willing to listen to you without interrupting and let you have your say, try to get through to them.  If no one will extend you the dignity of allowing you to recuperate and have feelings, emotions, and a low battery - don't waste your low battery trying to convert them.

Try saying (in your own words) something like, "I don't think you fully understand my situation, and my demeanor is quite normal for a person fighting cancer.  Thank you for your concern."  [Watch their faces.  When they are out of earshot, get some good laughs.  You took the high road.  You are handling this admirably.  It's not you, it's them.]

sessna1

Jane_M

Sessna - Have I told you lately that I love you?  I enjoy all of your posts and they all speak to me and tell me what I need to hear when I need to hear it.  Thank you.

Anonymous

Jane_M and sessna1 have a mutual admiration society going!  Hooray!  I feel the love.  Thank you, Jane_M.  I love you, too, Jane_M.  I care.  I care, people.  That's why we are all put on earth to learn to care better, more, and to the best of our ability.

KAK

Hi, sweeties.  Just a quickie.   I've gotta catch up on everything later.  But hugs for all the suckage going around (we call them Issues of Suckage on this thread -- IOS for short).

I actually have an SOI - Suckage Otherwise Inverted.  Which is that my new med for fatigue actually works!!!!   Provigil has been a godsend.  And Jane, this is for you...and your family & anyone else who DOESN'T GET IT.

Here's a link to a post on my blog about cancer related fatigue.  Forgive me if I'm repeating myself.  I can't remember whom I've told what to.  I did extensive research before writing this, and there are a lot of useful links:  The F Word -- Fatigue

The most comprehensive write-up on the issue is at the site for the National Cancer Institute.  There's a version of it for patients as well as for healthcare professionals, so you can tell your (stupid, uninformed, uncaring) doctors to read it.  My surgeon did.  She uses that site a lot.  That's why she knew about the Provigil, so I didn't have to tell her about it.   Anyway, here it is:

Cancer Related Fatigue

Sessna, my dear lady, has anyone ever told you that you are a true Amazon Warrior?  I might just have to send you one of my Accidental Amazon tee-shirts just because you deserve one for being such a caring, butt-kicking, calling-a-spade-a-shovel kind of gal.  My mother always used to say that, "just call a spade a shovel, will ya?" when someone was not getting to the point or being dishonest.  Love that.

Hugs to everyone.

EWB

Kathi--such great news! Now maybe you will have a chance to get a jump on the fatigue thing. I think the "experts" really need to hear what pts are saying and that pts really need to be clear, vocal, assertive and persistant when reporting these SEs...there is no reason why we (patient community) should just be left to deal with these on our own...I don't know about others but sometimes I feel like I must be making this all up in my head...I know I'm not but QOL really needs to be defined and recognized more specifically..if that makes any sense ---so tired today ---

Hugs all around

Anonymous

KAK, you have honored my mother, my great aunt, her daughters, her granddaughter, and all my ancestors.  They thank you, I thank you.  I humbly thank you.  My father responds, 'I couldn't have chosen a better daughter.'   (See, Mom?  I'm doing this for you.  They'll know I was your daughter.  See?  You will always be one of my first heroes.  I'm respecting you.)

I pray to be made better than I am.  At your service, m'lady.

Those are some heavy hitting web pages you just posted - and thank you for doing so! 

Hugs, hugs.  Wiping away of tears.  We are all given goals, talents, gifts, and fortes.  NO ONE is sent to earth without a skill and a blessing.  No one.  {Hey!  It's pronounced "fort" not "for-tay" honest.  http://www.merriam-webster.com/dictionary/forte   check out the pronunciation and read the usage on your own PC.}

- - - - - - -

See what happens when we go from "Whatever," to "I don't care," to "Nobody cares what you think," to disdain, to contempt, to hate, to apathy?  Don't go there, people.  It's a slippery slope that invites others to discount you and what you stand for. 

You are here to learn.  I love the lyrics of a Whitney Houston Song, '... don't ever throw away your miracle.'  Have you thrown away a miracle lately?  Did you fail to recognize and appreciate it? 

Turn off the electronic- world.  You have more important things to do than be e-leashed 24/7. 

You can mess with your vision, hearing, manual dexterity, comprehension, and wisdom by turning it over to a barrage of electronic lights, sounds, and pretty pablum.  Don't do it.  Don't let the people you love do it.  Put down that blackberry and pick up a blueberry or twelve to eat.  Antioxidants, you know?   

Yours,

sessna1

Jane_M

Sessna1 = Would you believe I can't stand blueberries but I love blueberry muffins?  How strange is that?  Of course, I won't eat peas, but I love pea soup...go figure.

Mary22

I am with you Jane, I love the muffins can eat the berries plain.!!!!

Hello to all, just a quick stop will have to read posts later. (((((HUGS))))))) to all and a

BIG THAT SUX!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
for all who need it.

third day of school and I am trying to get use to the schedule!!!!! Oh well only 177 days left!!!!

Jane_M

Just got the report from yesterday's mammo (faxed not from Dr.)  It says that I have an assymmetric nodular density in the retreareolar compartment requiring spot compression view for further evaluation.  I'm not too worried about it since I've always had dense breasts and I just had a normal PET scan.  I wonder how long it will take my doctors to let me know?

navygirl

Drive by ladies...just to say hi and let you all know I was thinking of you...I had a class today and had to get up at 4am so I'm pretty wiped having just now gotten home. I wonder, how did I ever do this every day and still contend with a long commute afterwards?? Hard to believe...

I'm sorry I am not taking the time to respond individually....but all appears well and when there is so much love in the air I know -at least for now-I don't have to worry about you all as all is well for the time being.

(((HUGS))) 

Anonymous

Jane_M, I don't like any seafood - except sushi.  Two boyfriends ago, the guy taught me how to enjoy it.  I won't eat cooked fish, but I'll eat it raw.  Go figure. 

Blueberries are better when cooked into something you like.

Will you be going for an ultrasound?  Your diagnosis sounded like Greek to me the first time I read it.  ... They said what?  I read it again.  I have dense breasts, too.  Well, one dense breast.  (Mastectomy humor, there).

I'm with you - don't be too worried about anything because it doesn't help you get through life.  It just saps your energy instead of waiting to rejoice for success or dealing with the situation that tries you.

Hugs to you. 

sessna1

Jane_M

I'm going for more "films" today.  I don't know what films they'll be doing, but we'll see what develops.  I've already decided in my own mind that if they tell me that it's something pre-cancerous or something "we have to watch," it's coming off.  I'm not dealing with this again.

CapeBretongirl

Jane_M  good for you.  I agree.  Why wake up every morning feeling like you have a ticking time bomb in your breast.  You don't need the stress.  (((Hugs))) Angel

lvtwoqlt

Jane, after my 2nd scare with pre-cancer, my dr suggested I consider pbm. At my next mammo it was suspicious for the 3rd time. I went into my surgeons office telling him, I wanted these 'ticking time boobs' off. The third stero biopsy showed DCIS and I had the bilat surgery 6 weeks later. good luck on your spot compressions.

Sheila

CapeBretongirl

I realize this subject isn't funny, but....  Ivtwoqlt I LMAO with your statement "ticking time boobs"  I think that is one phrase that we should adopt and use on bc.org.   Thanks  Angel

lvtwoqlt

I now say, 'these boobs are fake, my real ones tried to kill me!' This disease took away my natural boobs not my sense of humor. The third biopsy I had was 2 yrs from my first biopsy. My final path report after my bilat showed more pre-cancer ADH in both breasts that didn't show on the mammo so who's laughing now at the 'ticking time boob' comment.

Sheila

CapeBretongirl

LMAO, Sheila, I'm glad your've kept your sense of humor.  I would love to get a t-shirt with the killing boob comment. I don't think I'd ever have the guts to wear it though. You definitely had "ticking time boobs" I'm glad they are gone. I didn't have a bilat with my first or second bc. Then years later I discovered a painful mass on the side of my breast, towards the arm pit. My PCP said that cancer doesn't hurt, don't fret. Tests and mammo were done. They indicated calcification spots in my remaining breast. Once again, I was instructed not to worry, the experts would keep an eye on it.

After frequent mammos, agonizing and sleepless nights, I thought the anxiety alone would killed me. So, I went to the local women's walk in clinic, and requested a biopsy. 2 days later it was done. A call came from the clinic stating that it wasn't cancer, what a relief. The lump still hurt, but I went on with my life.

Long story short, The lump kept aching & increasing. I was reassured by the Dr.'s at the womens clinic that I had naught to worry about. I went back and demanded to see the Dr.. After a long wait, the Dr. came in and argued with me. She thought I was just being suspicious because of my first and second bc. She examined me, then left the room. She was gone for 30 minutes. When she came back, she had papers with her. It was the second part of the test results from the hospital, apparently, it had been misfiled. Some how the part of the test results that stated that I had cancer, went into the wrong file.  My niece also goes to the Womens Health Clinic. The only difference in our names is an a. I am Angel, she is Angela. The Dr. had incorrectly pulled her file, then discovered the cancer info before she realized she had pulled my niece's file. Cancer. A week later I had the other breast removed. By then the cancer had spread to my lungs and liver.

The morale of my long winded story: please it's not worth it, breasts can be reconstructed, you can't take back death. There absolutely are "ticking time boobs"

Your bc sister Angel

Jane_M

I went for my spot compression and there is something there, but like you all, I was told not to worry about it.  We'll watch it and do another mammo in 6 months - birad 3.  Of course, this was just the oral report given to me today.  I'll see the written report when it's ready.  It doesn't really matter, though, does it?  SOMETHING is there.  SOMETHING isn't supposed to be there.  I don't think I'm crazy wanting it off and I don't think anyone here thinks I'm crazy, either.  What do I do about the people not like us who just won't get it?

kbram

Jane and Angel,  I had multi focal cancer in my right breast and had to have a Mast.  I decided to have a BLM and I'm so glad I did.  I decided I did not want to go thru all that is BC again 10  yrs from now and when I was 10 yrs older.  The path report showed no cancer but "suspicious"cells that could develop into cancer yrs from now.  I was so glad I had the BLM.  We all have to do what we think is right but we have to also realize cancer is nothing to fool around with.  Best of luck to everyone.

Hugs, Kathy

CapeBretongirl

Kathy, thank you for sharing your story with us.  You made the right decision.  Hugs Angel

Mary22

I may sound vain, but I want to keep my boobs as long as possible. i took care of them when I was in my 20's and 30's so they would still look good in my 40's and 50's and what happens I get SFBC!!!!! When I first got pregnant w/ my son at 30 I wore a bra 24/7, because my B cup became a C cup, and then when I was nursing I was a D cup. I am now between a B&C and could go braless(at 41) without them drooping to my tummy. Enough vanity and venting SORRY ladies.

Good Luck Jane.

Sheila and YMB thank you for your story and I know if it came to the pt where I was having more and more suspicious mammo I would say take them away!!!!

barbe1958

I had a reduction about 6  years ago and had GORGEOUS breasts for a (then) 45 year old! When I was diagnosed with bc in my left breast I had them both taken off as I've had multiple biopsies over the years and didn't want to live in fear.

I like the "you can't take back death". It's so true.

Jane, if you get them off, just tell people it was cancer. None of their friggin' business what/how/if/? is in there. I had a bilat and the only thing in the"good" breast was ADHP, but I wasn't just going to take one off as I didn't do recon and enjoy being flat. Being a 38D-42D for 35 years was getting kind of old.

Jane_M

The "official" written report says, "possible persistence of the asymmetric nodular density.  However, the margins are obscured by overlying normal fibroglandular tissue making assessment difficult...Probably benign."

KAK

Oh, Jane....hugs!

Jane_M

It's Friday; I'm tired and my knees hurt...that's my IOS of the day.

barbe1958

How horrid to even have to think of the word benign again!

lvtwoqlt

Angel, Cafepress has that shirt available. http://t-shirts.cafepress.com/item/fake-large-womens-light-tshirt/388954035 My husband said that he would get it for me for my birthday.

My boobs wern't anything to write home about, because of the 2 previous biopises (one on each side) I was very lopsided (a cup/c cup) and when my ps asked me what I was expecting out of reconstruction. I told him I just wanted to have somewhat of a matching pair and I ended up with not quite twins but definately sisters.

Jane i also am giving you ((((hugs)))) for those people who just don't 'get it'. Can they do a biopsy to determine exactly what is there?

Sheila

Isabella4

Jane...I just hate the word probably.

Thinking of you.

Isabella.