Im bitchy, I moan, I groan.....anyway.
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Big SUX-ing all round. I have a big SUX -- grrrrrr (setting the tone). I have no control, or control is being wrested away from me....bit by bit...
I'm laid off and broke so I have the almighty dollar controlling my life much more than it used to. Of course cancer takes a nice big chunk of my control over my life. Now, yet another snippet of control being cut away. My boyfriend and I have a monthly party and potluck and often have about 40-50 people attending. We use a yahoo group to get things organized. Well, my utter shock and dismay when I read on the group last night that my BF and another guy are looking for furniture and re-arranging my basement and one main floor room to accomodate more people (of course, after I said I'd like these parties toned down -- too much work for me cleaning up). Huh?!?!? It's bad enough that my BF didn't mention this to me, consult with me, but he also doesn't even frickin' live with me!!! Here I am sitting reading that MY house is being invaded with crap that other people don't want in their house!!!! Of course I posted on the group to clarify the "miscommunication"...
Have you ever seen a TV show or movie where a character doesn't know they're dead and is flapping their arms around, talking to people and being ignored? That's what I'm feeling like about my so-called life -- Hellooooo!! I'm here! Can't you see me? Can't you hear me? I am the un-dead, so it seems. If my cat didn't meow at me once in a while I'd really start to wonder that I'm nothing more than a placeholder of space while everything zips around me. I'm slipping down into a spiral of nothingness and having a hard time crawling back out. This really sucks! Sounds pathetic, and it is -- I'm leaping into a big pool of self-pity here.
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KONAKAT - That SUX BIG Time!!!!
I think the loss of being able to control what is happening TO us and AROUND us is one of the worst parts about this damn disease! It is hard enough to deal with our own loss of self (the person we were before BC) but to be treated like a non-person just adds insult to injury!
I think we should all buy one of Mary22 t-shirts and show everyone who is boss!
<<<<<<<HUGS and THAT SUX TO ALL>>>>>>
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Thanks Michelle -- he showed up with cake this evening -- his apology for being an idiot. And just left to watch football. Sigh...all the more cake for me.
Very true -- we lose the sense of self. Added is the uncertainty -- I had a PET rescheduled for 3 weeks away -- it's like being in limbo, I need to know what my status is so I can figure some stuff out. I need to find a purpose, more than scratching my cat's tummy on demand!
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Jane - your husband needs to receive 40 whacks - what the hell is he thinking?
Konakat - what the hell are your friends thinking?
What is the matter with these people who are supposed to love us and be close to us?
In August 2004 while on the treadmill in the cardiologist's office to "rule out other causes" my heart stopped. I had to be kick started (electrical paddles), air lifted to a cardiac hospital, emergency angioplasty with the placement of 2 stents and the next day my youngest sister came to visit bringing her boyfriend with her who I had never met before! Last year, 2 days after I got out of the hospital after having bilateral mastectomy, she wanted to bring her new boyfriend and his entire family over to celebrate Christmas with me!
Jeez people - we are wrung out, sick, weak, emotionally and physically drained - give us some slack! PLEASE!
As for the snake - the closest I would ever come to "roughing it" was a hotel with black and white TV and I wouldn't be happy!'
BTW, my big SUX is I continue to be in a lot of pain and the stupid diabetic foot ulcer is not going away!!!!!!!!!!!!!!!!!!!!
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Konakat, unbelievable. Cecilia, hugs to you. I'm the queen of tired right now & I'm a year from dx & I'm pretty angry that the onc's have done such a lousy job of follow-up.
Kathleen, make sure you elevate that foot. Do you have a wound care clinic near you? If you can't get out, you can get the Visiting Nurses to come & tend it. Your doc can write a prescription. I know you know that as a diabetic, you really have to watch stuff like that because it's scary how fast that could lead to amputation & no one wants to go down that road. So, kick butt to get it the attention it needs.
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Cecelia, it is alright to be angry. I went in for a lumpectomy and when I was wheeled into recovery, I heard the nurse say partial mast. That scared the crap out of me and I said 'NO IT WAS ONLY A LUMP" the nurse said, yes that it what we call a partial mast. then I asked for pain meds. I have scars on my boobs and now along w/stretech marks I have scars on my tummy from an ooph.
A BIG THAT SUX for all who need it.
Konakat, I decided not to post on the Ins page anymore. Everytime I do, my computer freezes up.
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Hey! Here is one of my personal favorites...
Well now, one of us is going to have to be rude, and you've already had your turn.
-sessna1
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This is an offshoot of lack of accountability, consideration, compassion, manners, good-upbringing, and proper socialization. This is made ugly by stress. IF you have mostly been the give in, take care of it, generous nice person, you're going to have to raise your voice and octave and look people in the eye when you talk. Be firmer. They haven't been listening to you because they don't believe you mean it - or, they don't care what you mean, they want what they want. (see my previous post for a note to those bullying you...)
Remember, when the bars close, you don't have to go home, but you gotta get the heck up outta here.
-sessna1
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Sessna, LMAO!!!! ROFL, LOL!! And so true, too!!
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Anybody ever wash down a darvocet with a lite beer??? seriously.
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I've washed down Fioricet with Vodka....not a good plan.
The oncologist said my mass has to come out and be biopsied. He's also doing the PET scan. He made an apt for me to see the surgeon on Tuesday and his office will schedule the PET scan for next week.
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Prayers Jane!
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Bailey's always worked for me! I was sent home with Tylenol-3's. Bilateral mastectomies with reconstruction and they're giving me aspirin. Needless to say, a nursing friend helped me out, however, even his meds didn't touch the pain of MRSA/VRSA. But, the IV helped at the ER! I'm just sorry they didn't admit me. No, I lost the skin and got a flap!
I have learned so much the last two years - don't send flowers, send a maid! Don't believe anything they tell you - they all lie (doctors). Two weeks? My ass, two years is more like it. Tamoxifen - 50% chance of no recurrence? BS - how about NINE PERCENT! Onc. Surgeon called Onc. and got the straight poop - guess he didn't know I was listening in. Big Pharm runs everything and if a cure was found, think of all the people they'd put out of work.
Sorry for my cynicism, but after contracting MRSA/VRSA, undergoing nine surgeries and the SE of chemo, anesthesia and caustic antibiotics my "dick's in the dirt" and I don't trust any of them. And, I'm even taking antidepressants!
I just read Jane's diagnosis - I'm sorry and I hope you don't live in Florida. I wish you good fortune to find a good clean team. England has banned doctors from wearing ties due to MRSA infection. Tell your doctor to take his off!
Take care.
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I am so so very tired and then depression sets in. Therapist next week. Nurse has forgotten me twice. Its a little worrying. If she cant keep her patients straight, then I need a new one. David thinks Im being harsh. I waited two days for her call. The last time I had her cell no on my callers list, called and hung up... like it was an accident. She called me right back. But this time I was abouit a cold I am developing. Staying around the edges, zapping energy but staying away from my lungs. YEAAAAAAAH. But missing me like that scares me. The last time the nurse failed to show up she had a large mass in her liver.
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Dreamwriter, (((((HUGS))))) and A BIG THAT SUX!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Good luck w/ everything!!!!
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I like it Mary -- I beat cancer and you're next. Or in some of our cases, I'm beating on cancer and can take a break to focus on you!!
Jane -- good luck with the appt with the surgeon on Tues, and getting the PET.
Kajan -- what an ordeal!!!
Dream -- no you're not being harsh -- she has a commitment to you and has to be there. Watch that cold!
Big SUX to everyone.
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KAK - I know it takes a while but this is ridiculous! I was in the hospital almost 2 weeks and rehab for 3 weeks - completely off my foot trying to get it well and it was closed and healing and then when I came home it has a tiny hole in it! Unlike the hospital and rehab - there is no one to wait on me hand and foot!
Jane - Goopd luck, honey.
Kajan - I like your attitude - I had MRSA in that foot which is why the insurance company let me go to the hospital and then rehab! Besides the ulcerated foot, I broke my shoulder! The insurance company didn't think I needed rehab for a replacement shoulder so now I am at least 2 weeks behind in therapy. I think (doctors) are all liars too. Try questioning them too closely or challenging them - they don't like it one bit - even the nicest ones. I've gotten so many stories - why don't they just say they don't know!
Dream - gentle hugs - I am so sorry you are going through any of this. I don't think you are being harsh - you need medical help - I don't think that's too much to ask!
People keep saying you have to be your own best advocate and they are right!
Big hugs to all of you. Stay strong and don't let anyone tell you anything different than what you gut tells you!
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What I meant to say at the end is - we have to be strong for each other.
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Be strong for each other and be strong for yourself. If you feel uncomfortabel with how you are being treated by a doctor, tell him/her. If you do not agree with the course of tx, tell them, be your own voice, this is our life and although this all SUX, we are our own biggest advocate.
Remember the squeaky wheel gets all the attention.
We are actually having summer weather WOOOOOHOOOOOOO! I am off to run errands.
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I have had more than one "confrontation" with doctors. Why are you asking such and such a question.... gee maneeee.... it is MY body, my pain, MY LIFE we are talking about. If they are not the one to answer and tell, who the #*&%$( is the one to ask??? I know some are afraid of doctors in their white jackets and when they throw out medical terms that you can hardly pronounce.
When I had "only" 5 of the total of 9 reconstruction surgeries on my wrist, one doctor wrote in my file that I was a complainer and to ignore my complaints of pain, it was all in my head... When I got that report file and went to another doctor, I was LIVID...
I am tired of being strong when many days I feel like a wet noodle. Aches and pains are not my friends, although, like many of you, a part of each and every day. If I groan when at an appointment getting up or down from the exam table, don't give me "that look" and roll your eyes. Give me your hand and help me. Give me some credit for knowing and asking.
MEGA gentle Hugs for all. Ordinary things are enough to set the strongest person back and off kilter. Add BC, treatment, insensitive people and all the other garbage... grrrrrrrrrrrrrrrrrrrr !!!!!!
Have a good Saturday and prayers for only good things for all, Nancy
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What do you all think about "gut" feelings? Do you think we are overly sensitive? I am hoping/ praying for B9 results from this thing under my arm. But, my last name is Murphy...I should have kept my maiden name. I just have this "feeling" that it's going to be cancer. DD has the same feeling. We hope we're wrong, but do you guys think we have a sort of 6th sense about this stuff?
Also, I was tired through all of this stuff for the past year, but the past month to 6 weeks have been ridiculous. I went to bed at 7 PM last night and slept until 9 this morning. I'm a night owl. I hardly ever go to bed before 11. A friend suggested that, if this is another tumor, it may be sapping all my energy. She says cancer does that...it takes all our energy to grow. What do you think about that hypothesis?
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Kak,
Cynics don't sugar coat nothin'. (Quote by Noel Coward, playwright)Ladies, I have my cynic membership card from birth.
People - cut all the electronic out of your life that you can. You don't need to broadcast you. You are special - let's keep it that way. You don't give up your best to everyone. You can't. For non-believers, George Orwell gave you "Big Brother" in his book, "1994." For believers, God has your GPS. You don't want too many people to know too much about you. ... No, you don't.
There was a time in Hollywood that you had a publicity agent and a duenna/body guard/chaperon to keep you out of trouble. They didn't want any bad pictures or bad behavior of yours leaking to the press. There was a time when the press didn't print "bad" things about the president - they would take the White House's word on what shouldn't be in print.
When you have too much to do, something's gotta give.
Again. When you have TOO MUCH to do, something's gotta give.
-sessna1
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Connie 07,
Re the darvocet and light beer, you have a picture of yourself with a beautiful child in your arms. I know that you are a caring lady. Always be careful what you mix pharmaceuticals with. Never take medicine on an empty stomach unless the small print says that you can. Never take vitamins on an empty stomach. Now, specifically...
http://www.drugs.com/darvocet.html
"Tell your doctor if you drink more than three alcoholic beverages per day or if you have ever had alcoholic liver disease (cirrhosis). You may not be able to take medication that contains acetaminophen.
FDA pregnancy category C. It is not known whether Darvocet is harmful to an unborn baby, but it could cause breathing problems or addiction/withdrawal symptoms in a newborn. Tell your doctor if you are pregnant or plan to become pregnant during treatment. Acetaminophen and propoxyphene can pass into breast milk and may harm a nursing baby. Do not use Darvocet without telling your doctor if you are breast-feeding a baby."
"Tell your doctor if you drink more than three alcoholic beverages per day or if you have ever had alcoholic liver disease (cirrhosis). You may not be able to take medication that contains acetaminophen.
Propoxyphene may be habit-forming and should be used only by the person it was prescribed for. Keep the medication in a secure place where others cannot get to it. Darvocet can cause side effects that may impair your thinking or reactions. Be careful if you drive or do anything that requires you to be awake and alert.
Tell your doctor if the medicine seems to stop working as well in relieving your pain."
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Jane -- I think some people are very in-tune with their bodies and can know. I'm not one of those people. When I thought I was fine I had my mets confirmed. So I always assume the worst so either there's no bad surprise, or if I'm wrong, a really good surprise.
Sessna -- you are very right. The media has no class -- they report on things that are nobody's business. But then, there are the starlets not wearing underwear and "accidentally" flashing their vajaja's to the world. If you put it out there, it will be found!!
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All right people. Who hasn't heard me semi-rant about being your own best health advocate?
If a waiter forgets my drink for most of the meal and stays away long enough for me to finish most of the meal? He or she gets 10% and a dirty look.
Apply that to your health care, and be more discerning. Stand up for thyself! You have to. You have to fight for your health care.
If momma ain't happy, ain't nobody happy. You are the center of your home dynamic. Someone has to take care of you. If you have a man-boy DH, husband, boy friend, significant other, partner, it's time to consider home health care benefits from your insurance sources. If (Heaven forbid), you break a leg, or twist and ankle, what would happen then? Most of us are fighting for our longevity against cancer - that is really enough on your plate. You can't carry another person. You will pass away from the earth before they do. What will that have accomplished as they go on to drain another person? I am not saying the people that drain you are "bad," I am saying that you have to handle them and control that drain. You must. You must. You need a buffer between them and you. If it is a perfectly able friend who needs counseling, sometimes you have to let that friend go with your best wishes/prayers/words. You cannot do it all.
There are more insensitive, under-educated, think they have "a good heart" people in the world than there are earth angel people. That's just the way it is. We've been growing them that way for thousands of years.
Jane M. - we're coming for your husband and a maturity intervention session. We will have compassion for his Lyme Disease, and we will be firm and very firm.
Konakat - your man puts the "boy" in boyfriend. He is not unusual, as most men can't stand the stress and pain that a woman can - however, that doesn't mean that it doesn't affect us. I think stress contributes to having cancer. I really do. If you love him, he needs serious re-direction in how to appreciate you. Please work on him.
Kmccraw423 - I am sorry that the insensitive people are in your face and close to your immediate family. That means they are there for you to learn to deal with them and head them off for the benefit of your own health. When excrement is that close, you have to flush it away. Are you with me so far?
Kajan75 - I believe your anger is righteous anger. I am tired of being "cut on," too, and I do recall my first onco saying that his team was there for me. His head nurse was never there for me, and I am pleased with my now second onco. She doesn't turn her back to me and read the computer screen without turning back around to tell me what she's reading/learning/thinking. He did. I live close enough to a major player in the fight (City of Hope, Duarte CA). They have a 24/7 nurse triage. They ARE there for me. It's true I needed a POS health plan to get care there, and I have that.
It is an evil thought that no health care for some is better than bad health care for all. I am not intelligent, wise, educated, or smart enough to figure out what can be done.
Dreamwriter - two words ... new nurse. Three words. New nurse, please. Nurses have their jobs, your job is being your best health advocate. David is incorrect. He is a DH, however, he is incorrect - you need to be assertive and on top of your care. David needs to help you to help him. With you less than ambulatory-healthy, it affects him too.
Jane_M - Have you tested your gut? Is it usually on target, or do you need to calm down and then reassess what your gut says? Can you sleep on a decision and wake up more clarified, or will your decision change? It is not "bad" to have a gut that isn't reliable, it just means that you will have to rely more on information than your gut. Every gut must be tested - don't listen to people with unreliable guts ... well meaning folk "I had a dream about you" "I had a feeling that" "It came to me that." No, no, no. Their accuracy rate must be proven - they are well meaning and wrong. The worry won't do you any good. I know there are believers and non-believers out there. For the believers, take it to God in prayer and be silent afterwards for an answer. For non believers - ask for the higher power to direct you and be silent afterwards for an answer.
I am a born cynic and worrier - and I'm having to learn to push worry away. I can be concerned, but worry only shortens my life span and my concentration. Fine time - almost 50 and I have to LEARN not to be a worrier. However - for believers, the words are "with God, all things are possible."
I can't agree that a tumor saps all your energy because I believe most of the time that cancer patients are given their first diagnosis, they don't feel bad. Some find lumps or discharge or discoloration - but not energy sapping. I think most of the energy sapping is the stress, treatment, and drugs in your system. There was some famous chef about a month ago who was diagnosed with a cancer and passed away five days later. It was super advanced before he felt "sapped" enough to have it looked into.
I wish there was more concrete evidence and information to go upon, but until there is, take the high positive road. I'm not saying that it's simple or easy to do - I'm saying that it is best that we do that.
Hugs to all. Strong, sincere hugs to all. Time to rest. Don't know if the computer will accept such a long post. I'll hit the button.
Your sessna1
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Oh Sessna -- I hear you roar! Yeehaa!! You go woman!! You've definitely got it right about my "boy". He won't change, I need to wean myself off him and head home.
Excellent rant!!!
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I just got an e-mail from "Breast Cancer Options," a local organization that sends me updates on conferences, etc. A recent study showed that women who breastfeed have a lower incidence of breast cancer and that women who have their first child before age 25 and breastfeed and have 4 or more children have an even lower risk of breast cancer.....I guess someone forgot to tell my breasts...either that, or I was 1 kid short...I had my first of three children at 19 and I breastfed all 3 of them.
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Konakat, bless your ears for hearing, as I spoke in respect, love, and concern to all above. He may be the type that would improve with some tough love wise females' teachings, and then again, he may not be. When a man truly loves a woman, he will make the effort. When a man knows that his behaviors could lessen his time with his woman one day - one week - one month, and he truly loves his woman, he will work on adjusting his priorities and make an effort. A good man would understand what I just said, y'all.
Jane_M, see how statistics can say whatever the writer wants them to say? My mother breastfed me, and she had bc. Cancer runs in her family. Cancer runs in my father's family. I knew it was coming for me, I just didn't know when. I hit the genetic jackpot. I truly believe that if I had octo-mom'ed up (one at a time, though) starting 25 years of age and breast-fed, the genetic odds would still be against me. Every body is different.
All you need to do is see your first child with a shaved head in a wheel chair at a cancer specialty center and your heart deflates. Children should not get cancer. That's TOO young for something so heavy. It's not right. It's not right. Disease is evolving while we are devolving in resistance. Environment, stressors, nutrients, genetics - and all this means ... ??? ... Do not stay up at night with anxiety or worry! Do the best you can and encourage others to do the same. Read, educate yourself, be alert, connect with the higher power you believe in or God (if He is the higher power you believe in) to recharge your battery.
-sessna1
Hugs to all that need to be comforted, and peace.
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It was a good post Sessna -- I used the words "excellent rant", a rally around your sisters is more like it -- just couldn't think of the word -- darn chemo-brain!!! I knew the word I wanted started with an "r"! And thank-you -- your care is very touching, makes me feel good!
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Hi ladies,
I made two diaper cakes this weekend, one for a boy and one for a girl, I now hate the smell of Huggies. It was pure heaven to get back to life as it used to be. Eyebrowless, 25 LBS heavier but otherwise close to normal.
The last of my SIL's (4 total) have tested positive for the BRAC 2 gene. This particular mutation has an 84% chance of breast cancer but the onset is later in life. I insisted that my husband take out an additional life insurance policy prior to taking the test and he finally agreed. (You can't get life insurance if you're a carrier.) He has jokingly told everyone we know that if he dies anytime soon that I did it. Jack ass!!!
Can I shamelessly beg for some prayers that he tests negative for the gene? The only thing worse than hearing "you have cancer" is "Mom I have cancer." I can't imagine my girls having to deal with this.
I big THAT SUX to all that need it.
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