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Old 10-19-2015, 09:47 AM   #1
Juls
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The power of words

Read an article in a daily paper a few days ago about BC.
Part of it was a comment made by a well known person in UK who had BC. She went to New York for aggressive treatment & when she came back, visited UK Doctor.
She was astonished to be told that she was "in remission". She replied "No". "I am cancer free. That's what they call it in the US".
The US comment was what made her strong.
The power of words!!
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Old 10-19-2015, 10:43 AM   #2
Andrea Barnett Budin
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Re: The power of words

The soul always knows what to do to heal the body. The challenge is to silence the mind.

Kick fears to the curb.

Your words have the power to hurt, to heal, open minds, open hearts and change the world. Never forget the responsibility you have over the words you speak.

Your every thought and the images that play out on your mental screen, everything you focus your attention on -- for good or bad -- is heard by your body. It is your body's job to follow your instructions. So be careful what you think. It will determine outcomes!

Your words and thoughts become self-prophesizing.

The Universe also senses the energy you emit and responds -- IN KIND.

Never say, This is killing me, for example.

I AM HEALTHY AND WELL. (Even if it's your stated goal, your Intention and Expectation.) I DO NOT HAVE CANCER. NO MORE CANCER. This is what I tell myself every single day for 20 years.

It is a declaration that your body, and the Universe, take very seriously. Don't joke. Be clear.

You don't have to know how it works. Just KNOW it does!!!


Right on Juls! You are seeing something miraculous, and sharing it with your Sisters. Bless you!
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 10-19-2015, 10:58 AM   #3
Juls
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Re: The power of words

Hi Andi
Don't know what has happened to me recently - Seem to have found this strange positive streak!! LOL
I was always told I was too serious & negative. Never really believed it, just thought I liked to see both sides. Now find I am getting very fed up with negativity. Especially when things are good!
I am trying hard at the moment to knock any negative thoughts out my head!!
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Old 10-20-2015, 08:46 AM   #4
Donna H
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Re: The power of words

Many people have asked me if I am in remission - I always say no - the cancer is gone. Removed. Adios. Shortly after starting treatment, my Mom move in with my husband and me. I never knew how negative she is. Maybe it is because my Dad recently died (4 days after my first chemo) but she has been a challenge to live with every day. I believe in focusing on the positives. My glass is half full. With that in mind, I believe I can redirect Mom's state of mind. It just might take a while! But I defeated cancer so I can get Mom to see the sunny side of life too.
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Old 10-20-2015, 11:39 AM   #5
SpitFire
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Smile Re: The power of words

This is something I struggle with everyday. What Juls and Andi say is so true. You will never accomplish anything by being negative. There is more to life than what we can see.
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Old 10-20-2015, 12:23 PM   #6
tricia keegan
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Re: The power of words

I fully agree Ladies and always do try to see the glass as half full which can be challenging some days!
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Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 10-21-2015, 11:24 AM   #7
Andrea Barnett Budin
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Re: The power of words

We have to be tough and let go of those who are toxic. Friends is really hard, cause you truly care but you must care more for yourself and your well-being.

When it's family it's way more difficult. I have an arrangement w/my sister who is I say bipolar and narcissistic. We email. I give advice, she is respectful and disregards most of what I say. That's the best we can do. We plant a seed and back away.

Living with someone who is full of negativity blows my mind. I do not believe I could handle it. For this you simply must stay focused on being strong and positive. Share that with the person, and head for the bedroom. Go run errands. Man, that is a difficult spot to be in.

Juls, sounds like your Spirit has made contact with you midst your crisis. That's when mine shines through. And I connect with it consciously now. Daily. It speaks to me and I love and trust it. More than the voice in my head. My Spirit is the True Me. Let it keep guiding you. Happy for you.
You can live in joy and serenity KNOWING what you want already exists and is on its way to you... Hold that thought!
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 10-21-2015, 01:51 PM   #8
Juls
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Re: The power of words

Thanks Andi.
I have to admit -
I have spent the last few days avoiding an old school friend who mentally drains me. Terrible thing to do but unfortunately the truth! Just can't cope with her this week.
Never thought I would do such a thing!
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Old 10-22-2015, 09:14 AM   #9
Andrea Barnett Budin
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Re: The power of words

With my 2nd dx when the bc spread throughout my liver, and I had been stung by a few "friends" who dodged me in the supermarket, hiding in other aisles, "friends" who didn't send a card or make a phone call, I suddenly realized that IF the stats were true and I maybe had a year left, I would be very selective about who I spent time with (on the phone or out to dinner or whatever).

I started to cut the dead wood. And that's not the person I was.

Once I took the energy suckers out of my life, the takers in general who used me when it was convenient for them but disappeared otherwise, I found it amazing. Though I chastised myself for being so cold-hearted -- I FELT WAY BETTER!

Their absence made me a happier person. No more coming home from a "date" and feeling angry and insulted, disrespected and drained of all energy!

I've always been a kind and giving person, tolerant and "nice"/polite. But you know, if you feel like crap every time you encounter certain pp, even dear old friends, sometimes it's necessary to cut them out of your life. Nicely. Always like a lady. No hard feelings. Can't even explain that every time we meet you say something that is hurtful to me, you don't think before you speak, you don't consider others' feelings and you take me and my hospitality for granted.

I decided I don't need those people in my life, and that I feel relieved not to have to deal with them. Sounds harsh, but it's a gift you owe yourself. Sigh. Turning the other cheek, being taken advantage of -- enough. I deserve better. And so do each of us.

Follow your heart.

My kids would say, Why is she/he your friend? Every time you see them you are upset by them. And they were right. Some pp had become a "habit". There were of course many good qualities, but if I am ranting about my lst encounter for days, all distressed and aggravated -- those pp shouldn't be in my inner circle. Hard to do, but it's my new policy. If it hurts, don't do it anymore.

Makes sense, yes?
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 10-22-2015, 02:10 PM   #10
Juls
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Re: The power of words

Andi

This totally makes sense. You could be describing me! My Kids have said exactly the same.
A friend said to me "you'll let them upset you to save their feelings?!" And I have! How stupid is that?
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Old 10-22-2015, 02:20 PM   #11
suzan w
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Re: The power of words

I really like how you put it, Andi, "plant the seed and walk away"...sometimes walking away is the hardest thing to do! Even though my cup sometimes tips over and I spill some, I always try to fill it up halfway full ASAP!!
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age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 10-22-2015, 04:26 PM   #12
Andrea Barnett Budin
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Re: The power of words

I've finally learned to see that I am polite TO A FAULT. To my own detriment. It's so ingrained in me not to be confrontational.

So, I now just gracefully back away. W/o the confrontation.

In the past, with beloved friends, I've tried addressing an issue, to be sure. Because the relationship is that important to me. And it's one issue that needs addressing.

Juls and Susan, you see my point. That is good. Cause it took me far too long to realize this. I think you're ahead of the game of Life armed w/this awareness... YOU deserve to derive pleasure from your relationships. Of course, there will be disagreements, but when you are consistently depleted and fairly enraged with each encounter with a person, it's time to let go...
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 10-23-2015, 04:18 AM   #13
MaineRottweilers
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Re: The power of words

It must take something really pivot to prompt one to say. NO MORE. I haven't yet found that inner strength to turn away, back away or just move away from these people. I have been able to limit their toxicity by meeting for brief moments over coffee and sticking to superficial conversations. My Mother and my sister as well as a number of my friends leave my feeling sucked dry after spending time with them. I don't have the energy for interactions with them nor do I have the strength to cut them from my life. I know they love me and are trying to help in their own way but they are just negative, controversial people who have far different beliefs than I do. It's difficult to have faith among the faithless, they make you feel childish---like believing in Santa or the Tooth Fairy.
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___________________________________________
11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%)
HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!
2/5/18 CT & BS = STABLE

//
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Old 10-25-2015, 11:32 AM   #14
Andrea Barnett Budin
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Re: The power of words

With people and most especially friends we have taken into our hearts over decades, if I finally come to the crystal clear realization that they leave me feeling offended or disrespected, that they always take and rarely if ever give unless it's convenient for them to do so, there comes a final straw, a line I reach over many years of tolerance where I just say -- What am I doing????

They are who they are. Have no clue what foolishness they speak consistently. Or they just keep taking advantage of me and they aren't going to change (I am the perpetual optimist but...). So I find myself saying (to myself) THAT'S IT. No more. And though I find myself in disbelief, I silently move away from them. No need for discussion or angry words. And they, surprisingly, don't even ask Why or What happened?

Some people are in your life for a time, for some reason, and they aren't meant to stay it seems. A harsh truth I have learned. It's just time to let go. Horrifyingly so...

With a parent or sibling, it's way different. My niece is having a nervous breakdown from her loving mother who is not mentally well and finds herself moving from, I must remove her from my life, thus blocking her texts and calls for a while, but always returning. Guilt is awful. The break sometimes helps, a little.

With my sister who is manic depressive and seriously messed up (bi polar/borderline personality/narcissist), I love her but I meet her only with my husband, in a public place for an hour over a drink. She rambles on and on, occasionally, literally, she stops and says, What? Wait. What did you say? A few words of mine have reached her brain and she is interested in the topic. But quickly she moves on nonstop, repeating and repeating. How many times can you say, I know, you just told me?

I don't do phone calls with her. We email. This allows for her to speak. And then for me to speak (so to speak) and we have a semblance of a conversation. Still she rambles and repeats and doesn't remember what I advised, yet says she appreciates my advice and then proceeds to listen to what docs tell her, which is her choice, but then she complains and complains, is bitter and angry b/c he/she didn't whatever. It's exhausting. A constant repetition.

When she is midst a crisis, which is frequent, she can email 10 x a day. I get caught up, loving her and trying to help, but it is pointless. Again, she repeats and repeats, is consistently furious and sometimes blaming herself for her situation and her bad choices. It's pathetic to hear and know. It hurts. But somehow, we must be resolute it our duty to keep our own sanity and well-being in tact.

Presently, I'm in a silent mode. I had a bad CT last June and mnths of seeing docs/surgeons, hours and hours on the phone with doc's staffs, trying to get answers to my questions. I refused surgery (which I had in June of 2013 and was feeling great before and sick and in pain for many mnths thereafter). We resolved finally to do a CT guided needle biopsy. I had one in '98 when the bc spread throughout my liver. Liver biopsy, CT guided. A breeze. No this. It was a 1 and 1/2 hour procedure that was grueling from scheduling straight through their cancellation b/c they neglected to tell me to stop aspirin and on and on. BENIGN.

So when I mentioned my situation to my sister in emails she immediately shut up about her difficulties and said I was amazing and she couldn't be like me and she stopped pestering me without a break after 5 months.

It is sad, Tracy, but in the end we must take good care of ourselves. We can't sacrifice ourselves to those we love. That's a hard choice but a necessary one as I see it. We cannot allow someone else make us literally sick.
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'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 10-31-2015, 05:04 AM   #15
Juls
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Re: The power of words

Should heed my own words -

A bit of negativity crept in over the last week.
Had a scan and it was 3 weeks later than normal plus had to wait a week to get results ( I'm sure you all know the thoughts). Usually wait is 3/4 days. It was a long week!! Got results on Thursday - all good!! Said to my Nurse that I was really worried and had been a long week. Her reply - "why didn't you phone in for results?" I have been going to this clinic for 2 1/2 years with scans every 9 weeks and never been told this was possible! Checked with other Ladies and they didn't know this was possible either.
Positivity back now but it did waiver!

Andi - did have mantra!
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Old 10-31-2015, 01:33 PM   #16
Andrea Barnett Budin
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Re: The power of words

Juls, I had a similar ordeal this past June/July/into August!!!!!!!!!!

For a biopsy (ct guided needle biopsy of the mesentery/abdomen). New place. New doc. I called. And called. And was very nice and polite but anxiously waiting for the news of the now called "mass" spreading per CT scan in June). Gheeshh!

Benign.

Why was the doc, who I finally got, so silent at first???? Did he have bad news he couldn't figure out how to relate??? I asked him after he finally said, benign. SO WHY DON'T YOU SOUND HAPPIER???? He said, Well, we can never be 100% certain when something is benign.

Ok. How certain are you?????? Longggg pause. Slowly, 9 5 %.....

I'LL TAKE IT! Nothing in life is 100% certain.

With my once ev 8 wk scans (for 1 yr, then ev 3 mnth scans, finally, ev 4 mnth scans, and then ev 6 mnth scans) -- I have them performed at my chosen Imaging Center affiliated with the Boca Raton Hospital, which gives same day reports. They have an excellent reputation.

The Cancer Center where my doc now is (he used to be affiliated with Boca Raton Hosp) you never get same day reports. I have to explain this when I call for my results if I haven't heard by 2 PM.

I go in at 9 AM. I have a script that asks for a same day report. I verify this verbally.

These days my doc's office is so busy, I have to call. I call at 10:30 AM to let them know I have had my CT scans and am home and waiting with bated breath.

I call again at 2 PM if need be.

I always verify that my doc will in fact be in the office the day of my scan, or I know I can not receive the results.

I've been with my onc for 20 yrs. I was his first patient. For real. We have a special relationship, but he is wonderful to alll his patients.

He has called me in the past from limos to or from airports, from luggage carousels. He always returns my calls the same day.

Nowadays it's like pulling teeth as they say, but I am persistent. Both my husband and I can't breathe until we hear. To this day.

Part of me says, UNTIL YOU HAVE EVIDENCE TO THE CONTRARY, BELIEVE ALL IS STABLE. Another part of me has inscaniety. Just like every one else.

What mantra were you referring to, Juls? One I've posted or one I may have up my sleeve??

Glad you had a good report!!!!!!!!!!! YAY!!!!!!!!!

So so sorry you had to w a i t .....
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 10-31-2015, 01:56 PM   #17
Juls
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Re: The power of words

Thanks Andi
Mantra is the healthy, strong no cancer one with the chorus of song "I feel good" added in!!! Fortunately for all do not sing it out loud!!
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Old 10-31-2015, 02:02 PM   #18
Andrea Barnett Budin
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Re: The power of words

Same. In my head my voice is great. In chorus in elementary school the teacher went around and when she came to me she said, Just mouth the words. LOL. True!

BTW, I asked for a copy of my report to be faxed, as I always did. When you read it, your head reels but I want it for my records.

This report was dated the day after my hour and a half procedure. I reached the doc about 5 days after!!! After daily calling and promises on their end.
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 10-31-2015, 02:17 PM   #19
Juls
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Re: The power of words

They don't give you a copy here -
This time the Doctor put result up on computer screen and left it on. While he was writing up notes I tried to read it - only problem was I didn't have glasses on so was struggling to try & discreetly look at it. Glasses were at bottom of bag so couldn't get to easily. Next time going to go in with glasses in hand!
They really don't want you to know what's written about you here - Surprised file doesn't have "top secret" written across it!
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Old 10-31-2015, 02:21 PM   #20
Andrea Barnett Budin
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Re: The power of words

In America, you have a right to your medical records!

Where do you live?

It's your right! They are YOUR files / reports.
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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