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The Things I Wish I Were Told When I Was Diagnosed

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123Donna View Drop Down
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    Posted: Jun 30 2012 at 1:16pm
I saw this article and thought it was very good.  I think we could all add to this post about things we wish we knew when diagnosed.  This author was diagnosed with leukemia at the age of 27.

The Things I Wish I Were Told When I Was Diagnosed With Cancer


Your relationships are about to change. All of them. Some will get stronger. They will probably not be with the people you would expect. The people you want to handle this well might not be able to for a variety of reasons. Some of the reasons will be selfish. Some of them will be entirely innocent and circumstantial. All of them will be forgivable because no one plans for cancer. Carrying bitterness or anger won't help your recovery. Fighting for anyone to stick with you won't cure you. Those who can, will. 

You will be determined to have more energy than you do. You will convince yourself that you are thinking straight, are able to handle all of this and do not need anyone. You will run out fuel. Your body will change first and your mind will follow. You won't lose your mind, memories or sensibility. It will all come back. But, you will be different. You will never have the same sense of self. You should embrace this. Your old self was probably really great. Your transformed self will be even better. Give into what is happening and trust it. 

You are going to feel fear. Even if you are normally stubborn, confident and seemingly invincible you will finally find yourself admitting that you are scared of something. Cancer is scary and incredibly confusing. The unknowing will eat at you worse than the disease itself. You'll need distractions. Music and sleep will probably be the ones you resort to most. Reading will become difficult. So will watching TV or movies, having conversations, writing and basically everything else. They call it "chemo brain" for a reason. You will feel normal eventually. Just a new kind of normal. When you feel afraid let yourself lean on those around you. Cry. Be vulnerable. You are vulnerable. There will be time for strength, but never admitting weakness will cause anxiety to mount and your condition to worsen. Let it all out. Yell if you need to. Sing when you feel up to it. Sob uncontrollably. Apologize for your mood swings. Treatments and prescriptions will often be the cause of them. The people that love you will understand. 

The people that love you will be just as scared as you are. Probably more. They will be worrying even when they are smiling. They will assume you are in more pain than you are. They will be thinking about you dying and preparing for life without you. They will go through a process that you will never understand just like they will never understand the process you are going through. Let them process. Forgive them when they don't understand. Exercise patience when you can. Know that those that were built for this will be there when you get to the other side and you will all be able to laugh together again. You'll cry together too. Then you'll get to a place where you will just live in the world again together and that is when you know that you have beaten this. 

The sooner you recognize that you are mortal, the sooner you can create the mentality for survival. There is a chance you might not make it. Just like there is a chance that you will. Don't look at statistics. You are unique and what is happening inside you is unique. Your fight is yours alone and there are too many factors to compare yourself to others that have had your condition. No one will want you to think about death, but you won't have a choice. You will think about it from the moment you are given your diagnosis. Come to terms with it. Calmly accept it. Then, shift every thought you have into believing that you won't die. You are going to beat this. Your mental focus on that fact will be more powerful than any treatment you receive. 

Your doctors and nurses will become your source of comfort. You will feel safe with them. If you do not feel safe with them you need to change your care provider immediately. There is no time to waste. This shouldn't be a game played on anyone's terms but yours. When you find the right caretakers you will know immediately. Do not let insurance, money or red tape prevent you from getting the treatment you deserve. This is your only shot. There is always a way. Find those hands that you trust your life in and willingly give it to them. They will quickly bring you a sense of calm. They will spend time answering your questions. There will be no stupid questions to them. They won't do anything besides make you feel like you are the most important life that exists. They will never make you feel like they don't have things in control. They will be honest and accessible at all times. They might even become your friends. You might celebrate with them over drinks months or years after they have cured you. They deserve your gratitude, respect and appreciation daily. If you get upset at them during treatment know that they'll forgive you. They get that you're going through something they can't imagine- but they understand better than anyone. They see it every day and they choose to be there because they want to make the worst experience of your life more tolerable. 

You will need to find balance after treatment. Start by seeking balance during treatment. Eat well. Sleep well. Listen to your body. Explore meditation. Experiment with new forms of exercise that aren't so demanding. Embrace massage and other body therapies. Go to therapy. A therapist will be able to guide you through your journey in ways you could never fathom. Do not be too proud to speak to someone. You cannot afford to store up the intensity of the emotion that comes with fighting a life-threatening illness. Let it out for yourself. You will begin to hear your voice changing. That voice is who you are becoming in the face of mortality. Listen to that voice. It will be the purest, most authentic version of you that you have ever known. Bring that person into the world -- strengths and vulnerabilities and everything between. Be that person forever. 

You will inspire others. It will feel weird. People you haven't spoken to since grade school will be in touch. Ex-girlfriends, former colleagues... even people you felt never wanted to talk to you again. The influx of interest in your seemingly fading life will be greater than any living moment you have ever experienced. That support is what will shift a fading life into a surviving one. Be grateful for every message. Be appreciative of each gift and each visit. There will be moments where all of this attention will make you feel lonelier than you have ever felt in your life. In a hospital room full of people with messages stuffing your inbox, voicemail and mailbox you will find yourself feeling completely alone. This is when you will realize that you could afford to have a stronger relationship with yourself. That only you walk this earth with 100% investment in you. Make the investment and use this as an opportunity to reexamine your self-worth. Love yourself more than ever and recognize how much love there is for you in the world. Then start sharing that love. You will come to see that even when you are the neediest person you know you can still be giving. Giving will make you feel better than taking. 

When you get to the other side you won't believe it. They will tell you the disease is gone. Everyone you know will rejoice and return back to their lives. You'll constantly wonder if it is coming back. Slowly this feeling will fade, but cancer will always be a part of you. It will define how you see the world moving forward. You're going to feel like the future is a funny thing to think about because the present is going to suddenly seem incredibly important. Keep moving. You'll be more productive. You'll understand who truly loves you because they will still be there. You'll want to meet new people that connect to the newly evolved version of your old self. You'll want to let go of those that don't "get" who you are now. You'll feel a little guilty doing it. Then, you'll move on. You don't have time to waste. The greatest gift you've been given is that you now understand that and you're going to make the most of every second. You're going to be the most passionate person you know going forward. Translate that passion to a greater purpose. Be fearless again. 

http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Jun 30 2012 at 2:53pm
You'll want to let go of those that don't "get" who you are now. You'll feel a little guilty doing it. Then, you'll move on. You don't have time to waste.
Dear Donna,
Thanks for posting this article.  For those who may read this and recently been diagnosed, every word of it is true.  Painful, but true.
I highlighted the sentences that were and still are the hardest for me to accept.  When you start applying this truth to a brother and SIL and a few more, it really is painful.  After 6 years I have come to the understanding that I had to "let go and Let God." 
 
God Bless,
LillieHeart
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2015-9 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote godlovinmomof3 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 12 2012 at 3:04am
WOW, this was so right on the money.  Amazing when you realize its not just you that has felt this way.  TRULY BONDED AS SISTERS!!
Diag - 11/9/2010
Stage 2b
single mastectomy 11/23/2010
clear margins
3.5cm tumor 2N grade 3
AC biweekly 12/23/2010
T weekly Feb/2011 finished 5/4
begin radiation 6/2/2011
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Dec 19 2012 at 8:21pm
Hi,

"Bumping" this up for those who have joined the forums since Donna first posted the link:
   http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html
   for the article posted in the above 1st post.    Donna, thanks for the initial post.

When this thread was posted initially, it was read by a lot of members.
While one may not agree with every thing in the article, there may be a few things that one finds
helpful.

Also, some one else posted a phrase that I found very helpful...........but have not been able to find
that post again tonight. It had something like:
                  There is no one right way to do cancer.
That phrase reminds me that one can read, speak and listen to others    and learn from others about
their experiences and thoughts.......but it comes down to.... every one is an unique individual with
their own unique cancer experience. As with so many things, there will be both similarities and
differences.


With caring and positive thoughts,
Grateful for today............Judy


For newer member, there is a thread which has some of the commonly used abbreviations and
terms (such as "bumping") used on the forums:
   http://forum.tnbcfoundation.org/abbreviations-on-forums_topic9524.html

Edited by Grateful for today - Dec 19 2012 at 8:24pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beck Quote  Post ReplyReply Direct Link To This Post Posted: Jan 01 2013 at 3:55pm
I FIND THAT NO ONE EXCEPT PEOPLE WHO HAVE BEEN THERE JUST CANT GET IT... I REALLY HATE IT WHEN I RUN INTO SOMEONE, AND THEY ASK HOW I AM , AND I SAY, IM FINE, AND THEY LOOK AT YOU LIKE THEY DONT BELIEVE ME. MY BROTHER WHO HAD CANCER STAE4 AND SURVIVED, TOLD ME , THEY DONT KNOW WHATS GOING ON INSIDE THEM, MOST PEOPLE ARE CARING , BUT PART OF ME WISHES I NEVER WOULD OF TOLD ANYONE, ABOUT IT EVER, IF AND GOD FORBID IT EVER CAME BACK , THE ONLY ONES THAT WILL KNOW WILL BE MY HUSBAND, DAUGHTER, SON GRAND DAUGHTER,
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ali cat Quote  Post ReplyReply Direct Link To This Post Posted: Feb 02 2013 at 11:25am
Hi

everyone should read this

thanks
Diagnosed 3/12. Age 46. 4.5 cm. 5/13 nodes. Stage 2 grade 3. Left mastectomy. 8 chemo. 2 annaphalctic shocks on taxol thus changed to dutaxol. 25 rads. BRCA -. The Royal Marsden Hospital London.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Mar 06 2013 at 12:30am

Bumping up for new members and all......see above initial post.


Grateful for today............Judy

Edited by Grateful for today - Mar 06 2013 at 12:32am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: May 04 2013 at 10:22pm
Bumping up for new members and all who may not have seen this yet.......see above initial post.


Grateful for today............Judy
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Post Options Post Options   Thanks (1) Thanks(1)   Quote denise07 Quote  Post ReplyReply Direct Link To This Post Posted: May 05 2013 at 1:12am

I was told the truth from the get go no pussy futting around did what I had to do and I am still here 5 plus years later why? no answer, but the main factor is I am still here stage 2 grade 3 the most aggresive gee thanks but I am here so don't give up the fight who knows what tommorrow will bring but I am still here today.

DX Idc 10/07,st2,gr3,2/6 lymphnodes
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rosered71169 Quote  Post ReplyReply Direct Link To This Post Posted: May 06 2013 at 11:21am
This article really hit home for me. It hasn't been long since I was diagnosed and went through treatment but I am on "the other side" being NED! I remember hearing that the cancer was gone and not really believing the doctor. Cancer changes everything - some things for the worse and others for the better!
IDC 2-21-2012 @ age 42 TNBC, Stage IIA, Gr 3, 1.5cm Tumor Rt Breast, 3 Lymph Nodes, Neoadj Chemo, TACx6,BRCA Neg, Bilateral Mastectomy 7-30-12, 28 Rads, Bilateral DIEP 5-22-13...3 Beautiful Daughters
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Post Options Post Options   Thanks (1) Thanks(1)   Quote MLindaG Quote  Post ReplyReply Direct Link To This Post Posted: May 07 2013 at 6:19pm
I had not seen this post and it brought tears to my eyes!! It is so true about others...........some people so surprise you with their kindness it's unbelievable and others not so much!  I'm taking one day at a time and enjoying life to the fullest!!  It is very precious!
Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Aug 17 2013 at 11:34pm

Bumping up for new members and all who may not have seen this yet.......see above initial post.
Donna, thanks again for your initial post.


Grateful for today............Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 15 2013 at 11:20am
bump
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote sosue55 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 29 2013 at 3:54pm
I am have the same cancer...stage 2 grade 3 I am new to this site...Having found the cancer on Sept 7th...had a lumpectomy and started chemotherapy with my second round on Jan 2nd. I still have my hair but scalp starting to get tender...I appreciate any thoughts I can find on this forum as there is so much information to absorb...my goal is to survive this...unfortunately my mom didn't and died at the age I am now.  Hopefully treatment has changed some since 1978.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote dldlogan Quote  Post ReplyReply Direct Link To This Post Posted: Dec 29 2013 at 4:30pm
Sousue55,
When I was on chemo, my hair came out almost  2 weeks to the day after my first infusion.  One week after my treatment I told my sister my hair felt "dead", it just felt really strange.  When it started coming out in clumps, I went into the bathroom in front of a mirror and pulled it out.  It was quite liberating and gave me a sense of being in control since everything else was beyond my control.  When I was done I had her use the clippers on it.
 
I did manage to work thru the whole thing, so I wish you all the best. 
 
I pray your treatment works for you! HugHugHug
 
Diana
Diagnosis 6/25/12
Biopsy 7/20/12
Mastectomy 8/15/12
IDC 1.9 cm TN Gr 3 Stage I
Chemo Start 9/27/12 ACT
Done 3/7/13
BRCA Neg
Reoccurence-Lung 12/3/13-Biopsy 12/16/13 Brain MRI 2/20/14 Stage IV
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2014 at 12:41pm
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote sosue55 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2014 at 1:20pm
Thank you Diana I am done with treatment chemo and radiation, just dealing with swelling but am a year out from my lumpectomy almost. Hair is growing back, highlighted with grey but getting compliments on the colour and people saying I should keep it short. I thank God everyday that I made it through and my new life has started. I don't have the energy I once had but I think partly because of weight gain and age. Taking the time to smell the roses and enjoy life.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 01 2017 at 8:03pm

From Breast Cancer News, by Susan Miller

7 Things I Wish I Knew Before Starting Chemo

Chemo drunk is a feeling I can’t justly describe with words and adjectives.

I’ll take you back a bit: It’s December 21 and I’ve just finished my last chemo session at the hospital. I’m home, trying to have a conversation with my mom, but my eyes keep fixating on the velvet glow from a Yankee Candle. She says something funny and I laugh, a few seconds too late.

My mind is soupy and slow, like bisque that’s started to congeal. I hear words but my thoughts are lost in the emptiness of space. I meticulously toil over sentences, calculating each one through my head with the speed of an early edition fax machine. Something metallic catches my eye, the hardware on my mother’s purse, and now I’m hypnotized by how the silver reflects the flickering candle. It feels like my eyes are lost. They don’t know what to look toward, so they find light and drift to it drunkenly. My body is buzzing inside. I’m an old noisy refrigerator.

This feeling is nothing like alcohol intoxication. This is what it feels like to be dying. My cells, both good and bad, are being devoured as the poisonous cocktail of chemotherapy drugs flows through my veins. I’m being brought to the brink of death, just so I can rebuild. It’s war; destroy the enemy with brute force, but the victor suffers the casualties of battle as well.

You don’t want to be left wounded on the battlefield. Chemo is an experience we’re mostly unprepared to handle. My first few times were terrifying and I didn’t know what I was doing or what to expect. So, I’d like to share seven things I wish I had known about chemo before I started.

  1. You should drink so much water during chemo that you will feel like a water balloon. If you can’t drink water, try Gatorade, juice, or popsicles. I suggest you pack a lunch like you’re in third grade and your mom has just let you buy anything from the grocery store. Chemo is time-consuming and boring; knowing that you will have a few hours to sit around and eat whatever you want is something to look forward to.
  2. Ice your feet and toes! I’m shocked at how many hospitals don’t practice this method to prevent neuropathy. My infusion nurse would bring me two buckets of ice water and rubber gloves before chemo. I’d soak my hands/feet for one long, miserable hour during Taxotere (docetaxel) treatment. It’s not fun, but I never had any neuropathy or damage to my nails.
  3. You’re toxic. Your pee and saliva are toxic. The nurse will tell you that you need to flush the toilet at least twice and don’t share food or drinks with people.
  4. Chemo isn’t the only drug you’ll be getting. Steroids, antihistamines, anti-nausea and anti-anxiety drugs are just some of the usual pre-chemo meds. I took Emend (aprepitant), which is a three-day pack of pills that prevents nausea. I never threw up
  5. Dress warmly; hospitals are cold. Bring fuzzy socks or slippers for after your feet get an ice bath.
  6. If your hair falls out, it will start on the 14th day following chemo. And it kind of hurts. It felt like dull needles digging into my scalp. By the time I shaved my head, I just wanted it gone. I also was a little drunk (champagne), because I had a head-shaving party. … Which leads me to my last point. …
  7. You can still have a normal life. I had a party two weeks after my first chemo. I got drunk. I shaved my head. I cried. I sang Elton John songs with my friends until 3 a.m. I was alive. I was grateful. And I’m still alive because I never once let cancer or chemo stop me from living. You’re going to be fine. Drink the martini. Buy the fancy shoes. Keep on living your life, but with a tad more moxie.

    https://breastcancer-news.com/2017/07/07/cancer-chemo-7-things-i-wish-i-knew-before-starting
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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