Just diagnosed. Feeling helpless.

JMay
JMay Member Posts: 1
edited June 2014 in IBC (Inflammatory Breast Cancer)

ibc.

Stage 4

Triple negative.

4 year old daughter.

I am in total despair and don't see a way to fight. Fight for what? A few years of suffering where all my daughter remembers is a sick and weak ghost?

Help.

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Comments

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited January 2014

    JMay - I'm so sorry for your devastation. There are no words for what you are going through. Please check out the stage IV threads. The ladies know just what you're feeling. Also if the shock is too much please ask your dr for something to help with the anxiety. Gentle hug.

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  • Rakovina
    Rakovina Member Posts: 132
    edited January 2014

    JMay, you are in shock, and understandably so.  You will need some time to get your head around it all.  Be gentle on yourself right now.  You have every right to be angry, scared, upset and whatever else you are feeling, it is a b*tch of a disease!

    Do you have appointments with your Onc soon so you can ask questions (write them down and take them with you), and find out more information?  Take someone with you if you can, I forgot a lot that was said at the time.  I dont have IBC, but I have been stage IV for 3 years.  Its been a pretty good 3 years really, so dont think its all about suffering all the time. 

    hugs Tanya

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  • Sunny_Girl
    Sunny_Girl Member Posts: 111
    edited January 2014

    JMay - 

    Sending gentle hugs and warm wishes to you - I agree with farmerlucydaisy - check out the stage 4 boards, they have many knowledgeable people that can share and understand where you are coming from.  

    Patty

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited January 2014

    JMay.....I am So, So, SORRY, not fair...wish we could change things. There are some younger women in the stage 4 forums. Actually lots of amazing women. Get meds, for sleep & anxiety, you don't have to take them, but better to have them & not need them than to feel out of control and completely sleep deprived.  I would hope that your Dr. wrote you a prescription immediately. 

    I will be sending you positive energy & thoughts.....posting on the boards helps.   

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited January 2014

    JMay,

    Very sorry of your diagnosis.  I was also diagnosed from the start with ibc, stage IV almost 5years ago.  I am ER+ & take the aromatase inhibitors.  With ibc, chemo is usually the first treatment due to the aggressiveness of the disease.  You may also have radiation & surgery.  

    I hope you have lots of local support and help, especially raising a 4 year old going through this.  I had to wait to have surgery until a year after chemo due to being stage IV.  Please let us know if there any questions or we can direct you to any information needed.

    Hugs,

    Terri

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  • wyo
    wyo Member Posts: 541
    edited January 2014

    jmay- you have come to the place where you will find people who can understand what you are going through- people in your life can empathize but this is different. 

     Please please do try the Stage IV threads- it is a special place and takes courage to go there in some ways- others of us do not post because even on a breast cancer board if you are not stage IV you just don't "know".  

    The stories of courage and survival may give you strength and hope and even a laugh.  

    I am not a big believer in all this talk of fighting and being warriors- not sure why with a son who was a Marine but my perspective is- this is my body and this is my life- I need to do everything I can to support my body so I can continue to live my life.  

    My children are grown and my heart is heavy you have such a young daughter and will have a health journey that will take 150%- my 1 yo granddaughter gives me incentive- she knows what I can do not what I can't do- kids just meet you wherever your are.

     I can't know your daughter or you but when my mom was sick with Stage IV lymphoma as an adult daughter I never saw a sick and weak ghost I saw this amazingly calm and dignified woman 88lbs getting up each morning to face the day _ good ones and bad ones she is just my mom (amazingly doing well 6 years out)

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  • Kicks
    Kicks Member Posts: 4,131
    edited January 2014

    I hope this comes out the way I mean it but the written word over the internet ofter doesn't!

    IBC DX is not an immediate death sentence in todays world.  Nor does it mean that you will be "a sick and weak ghost".  There is no guarantee that 'tomorrow' something will not happen to you.   I'm 4+ yrs post IBC DX  and still NED (No Evidence of Disease).   I live e ery day I have to the most I can - some are better than others but that has nothing to do with my IBC but just what life is always for all of us.

    My Hubby lost his Mom when he was 9 to Cervical Cancer.  She fought like Hades to give him that last Christmas morning at home.  That  was the last day he saw her.  Give you daughter (no matter the outcome) your strength to fight.

    I have not had 'years of suffering' with  my IBC.  I'm as active as I've ever been and probably appreciate every day even more. 

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  • DreamDay
    DreamDay Member Posts: 6
    edited January 2014

    New here and just wanted to thank you to everyone who gave these answers (and the lady who answered the question).

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited January 2014

    JMay,

    Take time to breathe and get your treatment plan in place.  The plan always seems to make us feel more in control.  I was dx stage 4 in August, initially 3B in September , 2011, and my kids, teens, don't know I am now stage 4.  I am back in treatment, feel well, working, out with friends and looking to travel.  Initial treatment was doable, I was able to work though most of it.  Fatigue has been the biggest issue, so I just pace myself differently. 

    You can do this for yourself and for your daughter.  You have much living left to do

    Stay in touch

    Nel 


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