Can we have a forum for "older" people with bc?
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Gee, was waiting for someone to 'miss' me - thanks SV (
hehehe - just kidding; I'm all over these boards). But I have been following your story SV, browsed it yesterday and went back to read again earlier today. I was speechless at what you went through and had to take time to temper my response as it was something about castration! Okay, maybe not that severe but for what it's worth I would not let that first team anywhere near me again.
Anyone attend your appts with you? We have several groups here who will send someone who understands the medical jargon, ins and outs of treatment, various options, etc. I'm glad there is another Onc you can have review your file; I only wish you would change facilities altogether. As for making sure you get all your records, I personally would at least consult with an attorney as the hospital may try and put you off but the attorney would have all the legal expertise to make sure your records are released to you. I'm not one quick to sue but you need to really keep abreast of everything happening to you just in case you have to make them pick up any medical expenses caused by their errors.
Love to all my POD friends. Those of you not used to this cold and snow/ice - stay warm and safe.
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OMG Chris, I just took my wig off after a trial run and I have 'rug burns' on the side of head!! Sh*t, they look like racing strips! My stubble has been shaved off at the wig band. Is that supposed to happen??!! That is a deal breaker there. Patoo, come down and save me! It has been a day-In betwixt all, much earlier, I did an enema not realizing it was mineral oil and promptly slide right off the toilet-got stuck between the thrown and the shower stall. Right in a spot perfect for an old fat neeek-ed lady to be squeezed into. ALONE! Noone to help. CANCER is just so wrong is SO many ways!! ((((Hugs)))) SV
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SV,
Be prepared for resistance to asking another doc in the same firm.
Your blood tests should be seriously comprehensive, look for your IRON, this shock chemo that you had was ridiculously and unnecessarily overdosed. Look for your D levels and make sure they test your Thyroid because it's likely to react over time and a base line now should be established now probably along with a LOT of other vitals. I would not agree to another treatment, they've probably killed any radical cells you had already.
Get copies of EVERYTHING and keep in in date order.
I got (get) candida skin infections too, try using regular corn starch instead of talc, (from the baking dept.), You can get a spray powder that contains tolnaftate 1% in the foot first aid aisle but its gonna burn. Also, on the underarm issue, look for a crystal type deodorant, you just wet it to use and there's no skin reaction.
Bless your heart, you've been on a visit to hell and never booked THAT flight.
We are here for you.
~Connie
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good morning - my gosh a lot has gone on since yesterday morning.
Dar - thanks for the update - what a crock. My sis is a doc at a local hospital and would get called for things like "the patient has heartburn" because they will not do anything without a doctor's order or, like you, will find themselves in the same predictament as you were. My sister automatically posts orders for things like Tylenol, upset stomach, etc "just in case." But that is only for patients she admits. The calls come from other doctors who admit and don't leave such orders.
SV - I endorse getting everything in order for a trip to the attorney. Its hard to get everything and it is even harder to remember exact dates and times. EVERYONE GOING INTO THE HOSPITAL take a notepad and write in it everyday! Since I was not prepared, at one point, I was writing notes on paper towels! Its a shame that a patient has to be concerned with everything and not just healing. You must be your own advocate!
Isabella - our two little girls draw the line at going out when its wet - rain or snow! We got a 4 inch "dusting" as the weather folks say.
Spar - you poor thing - let us know when the power comes back on and stay warm - boy, like you needed this!
Patoo - you are right. I wish SV could go to another facility. I doubt anyone in her current facility is going to say anything about a colleague. And we did too miss you!
Sonia - Welcome! I have done that before - now I just mark them as favorites and from time to time remove old threads from my lisit to keep it manageable.
This is the pod of which I am a member!0 -
OMG -- about the rug burns. You need one of those little cotton beanies to put directly on your scalp -- before you put the wig on. I bought two of those. They not only prevent "rug burn and irritation" but as well, help the wig to stay in place better and not creep where it should not be. You can get these ( probably where wigs are sold ) but I went on Internet and found places like TLC which send catalogs to your home.
Chris -- reelchr, what kind of kitties do you have at home. I have many here at my house -- Ok, a whole lot, and I go around town everyday and feed feral cats at their colonies. We don't have a lot of there right now, but they are all adorable and know "about" what time I come daily and are usually waiting for me. Have some now growing quite well kittens from the last litter before winter.
Our Pomeranian, Baby Boss loves the snow....will go out and make like a snow plow. First winter with us I thought he would hate the snow....he adores it and seems not to get very cold. He is decended from Chow's and they are big sled pulling winter loving dogs -- and it sure shows with him. Teeny -- the Dachshund is not fond of going out in the snow and will hang back -- but will finally run out as if to say to B. Boss -- your not going to BEST me, but she is really ready when the door opens to scoot back inside quick and go sit over the top of one of the heat registers.
Furnace pilot went out so we woke up to 64 in the house. Never much fun to do that. I am usually so warm from coming out of the comforter on my bed that it takes some time for my body to actually register the cold.....by then furnace was going good again.
I left my usual quote on the other thread and though you all might enjoy it as well.....I grew up watching Fred Allen so got a kick out of this when I saw it --- and I am meaning no disrespect for today.
Hugs, Jackie
Most of us spend the first six days of each week sowing wild oats; then we go to church on Sunday and pray for a crop failure. Fred Allen
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HELLO- YOU GALS HAVE BEEN BUSY!
I am incensed about a couple of posts these are not in the correct order as i am wobbling back and forth on which makes me more furious! SV- they gave you 4 times too much! GET YOUR MEDICAL RECORDS AND GET THE HELL OUTOFTHERE! I would NOT go to anyone in the same group and you do deserve to be able to understand your doctor. - You can see fro Darolyn how they treat nurses and docs STICK together and will not take a stand against another doc- epically in their group. Please you other nurses chime in on that one. now to #2 which in a few seconds could be number 1 - Darolyn- that just pisses me off- hospital administration ! Here one oth the hospitals are blaming a poor CNA with a perfect record - who simply restated the security policy that is POSTED in the lobby when things got ugly - he was not the problem - the problem was too many true emergencies and not enough staff! Plus you undoubtedly saved a child from a bad situation- . You are a POD now and if you are a POD and did 27 years in a hospital you are stronger that even you know!
OK that was a great vent- now lets see I have been gone many days, yet I return and Isabellas' DH is STILL on the floor- SV has racing stripes down the sides of her head and was damn near killed by her medical team, 3/4 of you have LOTS of snow and poor spar has no heat! Always something.I have missed you good friends and have kept you close at heart. Must be mindful of the time as I have big goals today- need to modify a new bra and wash both dogs. Welcome to the new comers, you have landed feet first if you are on this thread!
Love hugs and sweet prayers to you all!
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Does Melissa have a new computer?
pam
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I am so appalled at the treatment that SV recceived and that they want her to go back to them for more that I started a new thread called IMMEDIATE HELP NEEDED. It's under chemo treatments, and it's asking for cancer centers on the east coast to step up and take her for genuine care and evaluations and treatments should she actually require further. THIS IS THE USA AND WE CARE... I'm hoping that a speciality center will step up and offer to help. Please help by commenting or bumping the thread constantly, until we get an offer and know that she will be cared for by the best there is to offer. HERE. NOW.
Thanks, ~Connie
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SV - stay with us, we are asking for a speciality cancer treatment center to STEP UP and offer to take you in, evaluate you and come up with a SPE CIAL treatment plan to help you.
Of course, you don't have to accept. But, I got so freaked out with our posts last night that I had nightmares about you going back to that place and taking any medical advice much less more treatments from them.
Post on there too, if you want, or just watch it and read and see if we really are almost 70,000 strong and RESOURSEFUL. I don't have any other way to contact you, so please check in, or have a family member respond so we know when you ARE SAFE AND IN GOOD HANDS.
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Hey Sonia, welcome to the conversation. I've been meaning to answer your q...
DCIS and no preventatives? Yes. me. Had a probably small lumpectomy, compared to others, with clean margins and full breast rads x33, 7 boosts. We opted to not add another chemical as I already have a full load and mother took one for 6 years with awful side effects.
I've always wondered what dogs do when there is snow on the ground? According to the pods, and K your blue whale is cool, some dive right in and others refuse to exit the house. I haven't lived north of here, and we rarely see snow. Today is cold but sunny and it feels great on my face.
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Connie....I posted on the new thread! Great idea..but I still don't know how to "bump"...
If we can all get together to help Melissa, it would be sooooo GREAT!!!! Just maybe, someone with any kind of authority will review our posts! To leave this all up to her, when they are the ones that screwed up is just outrageous! We would do this for our family, and we can do it for HER!!!!! Let's get together oh mighty pods! xoxoxo Jeannette
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Do you type "bump" at the biginning of your message? I tried it, & it still came up at bottom of thread...What am I, just stupid? What do you "bump" for? Jeannette
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"BUMP" just means that you are bumping the thread up to the top of the ACTIVE list. If you go to CHEMOTHERAPY and find this thread IMMEDIATE HELP NEEDED and click on it... you will see all other postings. Just scroll to the bottom and write BUMP or anything you want in the reply box and hit submit. This will keep the thread at the top of the ACTIVE list and more people will see it. That is the point of bumping a thread.
pam
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Dar...just to say Good Luck for your op. in the morning.
It'll soon be over, and you'll be back telling us all about it before you know where you are.
Isabella.
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Spar - do you have electricity yet? When Ashburn, VA was built - they buried everything, phone lines, cable lines, street lights electricity so ice and snow do not interrupt service.
Jo - how good to hear from you.
Melissa - get a new puter? I wnted to say something stronger to SV but you did it for me!
Dar - good luck tomorrow ... I will be praying for you.
Whoever asked about preventive medicine, I had a bilateral mastectomy for my DCIS and the oncologist thought the drugs would only make things worse considering my other medical problems.
Connie - when we got that 18 inches of snow, Darla (our dog) would get on top of the snow, assume the position and fall through the snow without accomplishing the deed.
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Poor Darla! What a shock that would be.
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Oh my wonderful PODS! I am trying to type thru my tears this evening. I am just sitting down to look at the posts for today and to get caught up on the Board. And I find that my glorious PODS are taking action for me. If I can document wrongs, I hope it will be for all of my BC sisters now and in the future. But please be cautious. I so fear for new women coming to the Board and seeing the worst of what can happen and being afraid-having CANCER IS ENOUGH to try to deal with. I freaked out this morning when I awoke because the magnitude of all of this is hitting me. I had to 'run away' for awhile. After a long 'meditative' walk on the beach, smelling the sea air and exploring tidal pools (and yes it is freezing here) I think I am going to ask the woman who spearheads many of our cancer fundraisers, to go with me to get all of my files from ONC; help me read and interpret them; set up an appt., then 'hear' this doc's explanation of O.D. again (with her present) and then get to another onc group as quickly as possible. I am just so torn up over this (more than I thought) and I could not stop crying this AM. I felt so alone when I woke up and so powerless and afraid. I do not know what chemo really does let alone know what an OD does and what damage was done to me. So I trundled the dogs into the SUV and drove up to Corolla (google "corolla wild horses" to see my beach) to try to clear my head and find something grander than my problems. In short, to find something bigger than CANCER to focus on! For me, it is the wild out of doors! GOOD GOD, the chemo fried me! I parked car on the beach and tried a walk. I used to walk an easy 3-4 miles on the beach and I could barely do 500 feet today. This is the first time I have been out to try to walk on the beach since the "Chemo Coma" and wow, given how I performed, I feel like I need a full medical assessment done and feel like I need to be followed closely by a caring medical team. Last meeting, this onc is like "well now that we have fried you we don't know what to do (in between asking me questions like, "Are your taste buds working?"-NO...He hangs his head and gets very quiet-then asks, "are your toenails black?"-YES...he is quiet again and, "when did your hair fall out?...about ten days after chemo" more questions with accurate symptoms asked about and affirmative answers.... and then him saying "you should be OK ("you'll be back to your baseline in a week", he said to me).... Meanwhile, see ya' March 11, to decide if you want more chemo (at 25% the dose we gave you-HUH?) or what. Gee, I thought you were supposed to tell me that, you A-hole! But please ladies, I know a horrible wrong was likely done but I do not know all of the facts nor the extent of damage done to me yet. I love you all dearly but do not want folks going off half-cocked when I still feel so in the dark about so many things. MOST OF ALL, I do not want to scare others who are new in this process. I need to know the full extent of what happened to me. JO is so very right, I need to get copies of chemo dose given me the first time and try to document how this medical team apparently went so very wrong. I think this will take a long time to assess, especially given the problems I had on my walk today. This was the first time out on the beach for a real walk and a true "push" of my body to try and test my bio systems. I am very aware of my body and I can tell that there are new neurological deficits right now (like very ataxic gate-for you nurses-that I could not control). I feel like I did when I first got sober-like nothing works right. I believe I truly have a 'head trauma' or head trauma like event because of the chemo, but this needs assessment. I need a new team prepared to do hands on care. I fear the ONC world is a tight one and will close ranks. I think this a precident setting case because I do not yet know of any woman who had the same experience I did. If there are women who were apparently OD"d on chemo, I would love to hear facts of your story and solutions, if you found any. Who did you go to to fix you? Again, if treatment team is telling me the truth and I am reacting in a way "and/or" I did get 75% more of the dose than I should have gotten, this is a huge deal. It is potentially precident setting on all fronts from medical malpractice to issues that only an attorney can establish (and sort through I think). If wrongs were done, this will speak to the future treatment of all women and men with BC and cancer for that matter. I do remember the ER nurse who was trying to 'fix' me after effects of first chemo, stating very forcefully and angrily that "chemo is big business" and there is so much money involved in it for the doctors. And to set guidelines and protections for all of us as patients who deserve premium care, regardless of our financial status. Yes, it is unacceptable and yes, something must be done, but a full accounting of what happened needs to be established. Again, I am too close to this and feel too damaged to grasp all that has happened right now. But please, in everyone's need to get justice for a "sister" this needs to be done in an 'unemotional', methodical way that will stand (at most), potential legal challenge without a preemptive backlash being done on BC victims. I feel like there are simply too many unanswered questions right now (like ya' need to take a lawyer in with you to get chemo?). I am having a very difficult time understanding how such a huge Oncology treatment team could have F'd up so badly. But then I go back to, I nor my Dad. could not get a hold of this ONC nor the huge "treatment team" for 3-4 days over the MLK holiday. Also, the ER, I ended up with for IV fluids and a patchup 'cause I was so ill, could not get ahold of this guy. In relaying my first questions on the BC Board to events right now, I did not mean to be the poster child for 'medical mal and negligence.' And I do not know why God put me here. Lord, knows, if anything, this is a testament to His grace, that if the worst did happen and I was highly OD'D, I am still alive! PODS, I am so very tired right now and I need to turn my brain off. Please know that I love you all with all of my heart-God be with and I have to believe that all that is wrong will be corrected. ((((HUGS))) SV
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That ONC - saying those things - asking those questions... I hope you never see him again, except maybe in court.
Maybe I got a bit riled up. But FOR GOD'S SAKE.. . . and the absense of aftercare, not even a minimal call back, even after the ER... ? BAD TEAM. BAD FORM. I'm glad you survived, and I'm glad you are able to even attempt to wrap your brain around all that's happened. I'm especially glad that you are in here and hearing the voices of care and reason.
SV, you are a strong and funny SUPERWOMAN! Excellent idea on "taking someone with you" to EVERY SINGLE APPOINTMENT. And take that recorder too, that you took it the first time is awe inspiring. When you are rested try and read over the suggestions on the other thread, there are helpful, honest and forthright doctors somewhere.
I HOPE.
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This is Dar, I jst want to thank everyone for all your prayers and thoughtfulness. I am going into this surgery trying to be positive. I pray this will be the last. Its my 4th surgery in 6 months. Love and hugs to all
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I hope it's the last time you have to have surgery too. STAY STRONG and know we love you!
((((((((((((((((SV))))))))))))))))))))) ((((((((((((((((((((((DAR))))))))))))))))))))
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OK... I've tried to figure it out on my own, but give up. What does POD mean? Thank you and I'll sit and enjoy my piece of humble pie now. LOL Karen
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Thanks, SV. This is all so new to me and I'm learning that each person IS different and has various extenuating circumstances that enter into decisions for treatment. Having the same dx isn't the only determining factor. Here's hoping you can get off the Prempro. I appreciate your taking the time to respond given all that you are going through at this time. Will keep you in my prayers and I will keep up with your posts to hear how you are doing. Karen
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Oh I just love it!! To me, POD-means like a POD of whales-forever joined thru generations, time, eternity and great wisdom, shaped by the same fierce forces, streamlined by the eons, speaking the same language, working for the same purpose, stronger than the all of the oceans, birthing, maternal, teaching one another the songs of the seas, protecting, playing, eternal in celebrating each other and living in perfect concert for the life, death, and pure joy of the POD.
To get an idea, go back a few pages and see, I think it is J's photo of the killer whales. Ya' have to be old to get it, I think.
But that is just my definition 
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DAR-my prayers are with you dear one! Hope this is the last surgery. PLZ let us know what we can do to support you. Sending 'a vulcan mind meld' of big bouquet of your fav flowers! SV
Connie, I just love you. Thank you for giving me a true reality check. You know, I just realized that the "ONC" I had is just a 'chemo-pusher' who gets beaucoup $$$$$. I went to the ACS website tonight and realized that this guy didn't even give me a "food plan" for chemo. He told me nothing. I call his nurse Friday and say my skin is really itchy and peeling and I get "oh yeh, that is because of the Tax...you really have to use a lot of lotion." HMMMM-would have been nice to know BEFORE. Everything I have learned, I learned off of the BC.org board. You women rock! I do not know what I would do without you all. SV
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Good morning everyone. Karen, glad to see you back. We are going to begin a warm-up soon and I so can't wait. Sun will be out as well. That is what makes me bloom and keeps my inspiration level high. I don't usually wish for Spring all that much but I'm already in eager anticipation. This winter so far has had such fierceness a time or two. I don't have a big problem ( yet ) but some of the older folks don't do near as well with it. I'd like to see them have the relief that more moderate weather will bring.
Once again....I'm going to include the quote I left on the Illinois thread because it just struck me so deeply.
Have a wonderful, loving, healing day.
Hugs, Jackie
Everyday, think as you wake up: Today I am fortunate to have woken up. I am alive. I have a precious human life. I am not going to waste it. I am going to use all my energies to develop myself to expand my heart out to others for the benefit of all beings.
Tenzin Gyatso0 -
SV ... chemo already suppresses your immune system and having that amount can suppress your bone marrow (which makes both red and white cells). This bone marrow suppression can open you up to all kinds of infections. My sister says at her hospital that if the doctor orders an unusual dose they contact the doctor to double check. I guess all forms broke down in your case including all the safety guards. BTW, your definition of a POD is wonderful.
Dar - still praying. As Connie so eloquently put it - I hope this is the last surgery.
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Yes, O Mighty Pods! That was beautiful StillVertical..! We are here for each other! So much good advice here! And I posted this picture before, trying to find one that "suits" us! Just take it easy Melissa....You still don't know what all has happened to you yet...and what might show up in the months to come. The obvious effects of that "over-dose" were life threatening....and very serious! We read about these things sometimes, about Doctors prescribing meds, whether requested or not, & patients barely escaping with their lives! So you know to take someone with you next time, to ask lots of questions, and only THEN decide what you want to do! God only knows, you have probably had enough Chemo to last 10 life times!
Keep getting out on those beautiful beaches Melissa.....running, (or walking) with your Pups is the best medicine for you right now! We just thank God you are getting better! xoxo Jeannette
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Oh, to be able to walk on the beach, what bliss. Actually I would take being able to walk at all right now.
Dar, hoping your surgery goes smoothly and is the last one.
JO, I was hoping your back was well, back. LOL Love you sweetie
Patoo, have been missing you girl
Got the electric back on and we are such a spoiled society, just can't live without it. We kept warm by closing all the doors and using the fireplace and all slept on the couch in front of the fireplace.
SV, no one should go through what you did and there will probably always be unanswered questions because probably no one knows the long term effect that that much chemo would have on you but you need a better team and let them know what happened and what their opinion is. Its just not right.
Isabella, I too have a thing for manatees, just love them. they look like gentle giants. The puppies are all happy and healthy and chewing everything in site.
Hi to all and hope everyone has a great week. Here is our theme song.
We are the PODS, the mighty mighty PODS
Everywhere we go, people want to know
who we are so we tell them
We are the PODS mighty mighty PODS.
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Good afternoon PODS,
Love the pics, the 'definition' of this pod and the theme song. Love to all of you. Thanks for all the kind words. I think I tend to overreact? With DD in this mess and I've been taking up the slack for the bad dad, my protective hormones are running wild.
baby just woke. mommy went to safe shelter and is filing papers today. He called her and harrassed, cursed, name called, apologized, for almost 2 hours last night.
GOOD WEATHER TO ALL
~Connie
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