MIDDLE-AGED WOMEN 40-60ish
Comments
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JO glad for the good news hopefully the burning with subside.
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TMarina - I started rads in Oct but did not find this website until Nov and did not know any better. Started on Nov rads threads but have been following everyone through Jan even though I finished in Dec. Wanted to hang around to help the ladies out.
I don't mind waiting for the surgeon or my MO either. They both give me the time I need to ask questions and do whatever else needs to be done. Updates are always good and just plain common courtesy. It's the bad docs you don't want to hang around and have to wait for. Our time is more valuable than that.
Got a good night sleep last night and now that the surgeon has called, I am more curious than anything to see how much of a change there is in the lung now. The RO should have mentioned this even with a very small percentage. Hate is when they withhold information. What? Do they think we won't understand? We are not dumb - just the opposite, we are very smart women that can process all this stuff.
Okay! I am coming down off the soapbox now - Whew! I do feel better. Thanks for listening
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HnS I am freakin' going. Not liking it but going.
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I was told when I began rads that a 20% of my lung would get affected by rads. (For the many newcomers, I'll just condense to say that one pitched fit later, the treatment was tweaked a bit and that percentage was down to 13%.) What it amounts to is collateral damage. That is depressing. The current treatments are not sophisticated enough yet to spare a healthy major organ from damage. We are supposed to be so happy to be alive, that we just accept the side effects/collateral damage. I'm not so accepting.
I do believe in hearing all the treatment information upfront, but as a newly diagnosed woman it is all too easy not to know EVERY question to ask. In my case, I did not have the presence of mind to ask my surgeon, "Hey, will you be leaving some surgical clips behind in my body, that will create a sore spot going on two years later?" Silly me! How could I have overlooked that question? Well, that is going to be a talking point between my BS and myself next month. If there is any chance that insureance will pay, I will have those clips removed. I realize that isn't likely and so I may have to keep them. What will I do with that ANGER?
We are just emotionally challenged, hormonally imbalanced women, dontcha know? (Knowing nods of head. Stop at the cashier on the way out. Cha-ching$$$)
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Barbara - okay, from one fellow procrastinator to another: you make an appointment with the ENT and I'll make an appointment with the endocrinologist. I've been putting that off since I finished rads (which is only a little over a month ago anyway....). But my onc says I have to go see him because I have a benign adenoma on my adrenal gland. Unfortunately, it has to be surgically removed and I don't wanna do that! The stupid thing is, I know I'll feel better when all is said and done, BUT.....! AAARGH!!!
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Elimar...so true....in the middle of my rads, his mom died...he was supposed to be at a conference and be a presenter and I was supposed to go and then decided now was not the time..when I saw him the 2nd time and asked him about the conference, he said he hadn't been able to go..his mom had passed and he flew to Vancouver instead...I felt so incredibly sad for him...he scooted out of the room pretty quick that visit ....clearly having a patient asking after his emotional health was not what he had planned...but he keeps it real....and clips??? They left clips in you??? WTH??? How could your insurance not pay for that? holy dinah!!!
(Sorry..got sidetracked there...back to my Ro).He has a web site (the healing circle) which included meditations, huge components on his lectures and those of his colleague and it is a wonderful wealth of information..especially good for being gentle with ourselves.
Barbe...yes indeed. I live in a beauiful part of Canada...edge of the world indeed my dear!
Jo....there you go...all those positive thoughts coming your way and the nurse and surgeon did he right thing! YES!!! Lung damage...scary stuff...breast cancer...scary stuff...5-10%...1/8 women get breast cancer..when folks tell me the odds are agains me having the symptom I now think..yeah, well I didn't expect to be the one out of eight either so....be cautious and live your life right? Glad they called you back today....they did the right thing on this one!
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Sandee, the surgical clips are used in place of sutures to close up blood vessels during surgery. Faster than suturing, get it? It's a common practice...not that I had a clue at the time. Don't you think a patient would have to sign off on the possibility of having those left in the body? I don't think I did, but it probably was just in the blanket "authorization to treat" form.
Hey, anyone, is this a taboo in any religion? I could convert just for the removal!
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wow....I had some plastic sticces that my skin absorbed...the ends poked up and scratched me a few times and then one morning I woke up and there was a bit of a raised red area ...my skin had closed over it...facinating! I accidentally pulled the one under my arm out when I was trying to clip the end of the plastic...but I guess by then it was already healed so no problem.
What are the clips made of?
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Elimar - Sounds like someone did not do a instrument count before closing you up. That would include the clips. Unacceptable in my book.
My surgeon and his wonderful nurse are the ones here who keep me focused and out of the looney bin. The phone call tells he a lot more about him - he really, really does care for his patients. He is not your typical egotistical, arrogant surgeon. In other words, he is the exception and not the rule.
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I found out by reading my records that I have at least one clip left in on my Partial mx side. Guess they figure what we don't know won't hurt them.
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I am the worst procrastinator. Today was the day to clean the house and organize my massively messy closet and start organizing for taxes (BarbA I feel your pain:)..HA! I was still cranky and messed up like I was last night-baggy saggy eyes and generally miserable. I had to go to whole foods to get my DIM and the hubby said why don't you to the big one in Houston- put some makeup on ( that was brave as I might have clobbered him for saying it) and get yourself a cup of coffee in one the cool coffee shops down there. He knows me so well. When I feel bad I totally shut down and don't brush my hair or put on makeup etc....really making me feel worse. So I bugged out and went totally insane shopping spending money I did not have to spend on clothes I did not need. I did get the DIM however:) But it was fun. and that is no small thing. I felt bad leaving the hubster with the kiddo all day after being gone all last weekend ( and I mean all day...I was gone for 8 hours!) but when i called him he just asked if I was relaxing. Some days that man is a wonder:) I am a notorious shopper (bargains, but shopping-clothes, groceries, books, you name it I shop for it) is nevertheless my drug of choice) and have done very very little clothes shopping since BC diagnosis. It hit me in Steinmart that I had been scared. Scared that somehow if I bought clothes that I was somehow pushing my luck with the damned cancer. Makes no sense but it was crystal clear in that dressing room. My whacko mind had somehow popped a circuit that I could "earn" a cancer-free status by not indulging. Very odd. Nothing to do with my how my body looks (in fact I appreciated how I could wear certain tops even with just the TEs in that would have looked ridiculous with my poor little saggy boobs before BC) but everything to do with my pea brain. Kind of like not stepping on a crack or you would damn well break your mother's back. I somehow mushed together shopping for fun with opening the floodgates of cancer. I really scare myself sometimes when I realize how absolutely dumb I can be. I called home and was bawling my eyes out saying it is ok to buy this stuff, it doesn't mean I will die...the poor guy just listened and then said no honey, it doesn't mean that at all. It means you are feeling more like yourself again...
Phew...sorry for the verbal explosion...but thanks
Jo- thank goodness they called you back. I find the waiting and wondering perhaps the worst part of all of this. Lets the gremlins in to do their nasty work:) BIG HUG
Elimar- clips?! Geezusgawdinheaven...I just read about a guy that kept having serious pain following a surgical procedure for years and all the docs kept tellinghim it was part of the deal and he would just have to suck it up and live with it....finally, like five years later, someone found the forceps they left inside of him!
Sandee....Halifax is calling me! If I don't make it to some part of Canada this year I will just spit.
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Girls, truly I believe the clips are MEANT to be left inside.
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Yes, they are titanium and meant to stay there forever. Mine are uncomfortable!
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Annettek - you would be more than welcome in Halifax. Just say the word and you have an instant tour guide!
And I understad about the shopping...except I reacted like that when my DH left....just shut down...which is odd as I am miss happy go lucky energizer bunny generally...didn't show, didn't care...after my diagnosis, something started to shift. I even got a new hair cut (first time thid short since I was in my mid-twenties) and changed my frames....and bought a paid or red and brown slingback pumps...didn't have anyone to call and ask if was normal to feel this way....but told a girlfriend I had bought shoes and she said "Sheeee's back!"...so it wasn't outrageious buying but was me noticing myself again and givimg myself permission to purchase something....
I get it.
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Elimar - I'm sorry yours are uncomfortable - I hope they can and will fix it!
I think we're all full of them! I think that's just the protocol now.
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I'm 40 pages behind! but my puter works!
I just finished ny third round of chemo. and second go round with trail drug. All is going well tired and weak but not to sick. They are keeping a close eye on my liver count. This was suppose to be my week off but now they want to see me and check my blood work and get IV Fluids. oh well. My big sister is coming this week for a long visit:)
Pink Hugs, Lisa
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So GREAT to see you Lisa! Thanks for the update. Have a gentle time with your sister....
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Hey PM, great to see you. Have a wonderful time with your sister and thanks for the update.
Love n hugs. Chrissyb
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Welcome back, P-Mom! I have missed seeing your pic with the pretty orange flowers. I was wondering the name of your trial drug? Meece was not sure. Glad to hear it is going (reasonably) well. So nice that your sister is coming, and I hope you get to do many non-B/C things together. Drop in again soon.0
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So Glad to see you post, P-Mom!!! You Made my day. Have a great time with your sister.
Hello to all of the great Middies. I read often but rarely post. I am a wall flower when ever you have a party. But I do Love Love Love all the cheeto chatter.
Navy
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Welcome Back P-Mom. So good to see you again. Have a great time with your sister.
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Jo-my Rad Onc, after months of my fighting to get questions answered, finally told me that there are so many side effects of radiation that it would take forever to go through them all, so he only covers the top couple-the "sunburn" and fatigue. Gotta love it. And he wonders why I don't believe anything he tells me anymore. I think that a 10$ chance of having to have a mastectomy to stop the pain from rads damage ought to be told. If I had heard that I would have gone back and had the mastectomy that I originally wanted right then, and not have had 3 years of my life destroyed.
Elimar-I get copies of all my medical records-not just the summaries but EVERYTHING, just because there are so many "routine" things like clips that docs don't think to tell us about. Yes, using clips shortens surgery time and decreases the chances of a hematoma, but it IS a foreign body and we should have the choice of allowing that or not. Or at least the right to know about them.
Annattek-I find myself stopping short when making plans more than a month or two out, even now, 3 almost 4 years later. The question crosses my mind "Can I really commit to this? Can I be sure I can do this?" It's a scary and frustrating feeling, but I've noticed it is beginning to fade out. Your hubby sounds like a very level headed person. I think you should listen to him!
PMom! Good to see you! Catching up can be a challenge, can't it?
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NativeMainer - My RO didn't even discuss the skin issues or the fatigue that would happen. Heck, he did not even tell me about the tattoos I was going to have. I found out about those when they were doing them - and did they hurt. I ended up with 3 of them. Guess I was supposed to know these things already or I was just supposed to go along with whatever he said and treat it as gospel. Well, I am not through with him yet.0
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{{{LISA}}}} so great to hear from you! We have been holding your cyber hand!
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jo--same thing happened to me re: tattoos. I freaked and refused them for a while. Gave in later, then spent a couple hundred dollars getting them lasered off. I'm still angry about that.
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Annettek- I completely understand..when my boss asked me for my year's plan at work, I refused to give it to him..told him I could give him 7..up to the point of my next mammogram and then would discuss it with him then....I had originally givem myself a 13 month deadline to get my broken heart/life dealt with post DH leaving....10 months into it got BC....feel like my plans to get on with my life have been stymied! Now I feel like I am going day by day..I plan a week in advance. Anything that goes beyond that I feel extremely nervous about wondering if something will fall through!Frustrating...
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Ah Sandee, you might as well get all the crap on your plate and once. Then once it's gone, it's gone!
I don't plan out more than 6 months. Still. Just over 2 years out.
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P-Mom glad to have you back and hope all is going well for you.
Why do docs think we know it all or that it is not important for us to know. It is not their decision to make. They should tell us everything and let us make the decision. We should not have to spend hours searching the internet for answers when most of them are being paid anywhere from $300-$500 an office visit from our insurance companies.
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NativeMainer - I am still pissed about the tattoos. I should have been told about them ahead of time. They are really small and I have to search for them to find them. Good thing - otherwise I would get them taken off. I can't see any of them when dressed.
Sherry - I agree with you. The internet is so full of information that it makes my head spin. I printed what seems like tons of information and was still confused. Maybe I should throw all that stuff in the bonfire. It would burn for hours.
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And for anyone with rads in their future...some RO's let you skip the tattoos if you do not want them, but you will be marked up with Sharpie on the chest for 6 1/2 weeks.
Anyone who appreciates primitive line drawing art as much as I do will love this option.
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