I want my life back!

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Here i am ridiculously early in the day after little sleep again, feeling shattered, haunted, and ,like i am on a shute in to the depths.......my whole life as been turned upside down over tha last 15 months, i feel ancient, out of normal life, have given up talking to people as they do not get it at all, and i still feel repulsed by my lop sided ness, i cannot bear to look at myself naked and cringe at thought of having an accident or something and having hospital staff see me.......its a year since surgery and although i have got used to it every day i still feel horrible about my physical state........



Is there something wrong with me? I make myself go out to places and keep busy with many things but inside i feel indescribable

Comments

  • Ariom
    Ariom Member Posts: 6,197
    edited May 2013

    Hi Lily,

    I feel so sorry, and helpless when I see a new post from you, and I read how you are feeling. You don't get any respite from it at all.

    Sleep deprivation, and bottling up these terrible feelings must be exhausting you. Do you have anyone at all that you can talk to? Is there a BC group that you could join?

    I'm willing to bet there are other women around you, who you aren't even aware of yet, who would love to have you to talk to, and to learn from. You have so much to offer, and it could take the focus off your feelings about your appearance.

    I have found that going to meetings once a month, I had one today, with other women in the same situation, and others much worse off, has been a great opportunity for me to help others, and feel supported, myself.

    You ask if there is something wrong with you? Certainly not, but I think that you are isolated, and perhaps that is what is giving you the perception that you have, about the way you look. Have you had anything to do with others who have had a BMX or UMX like you?

    I know this may not be for everyone, but at our meetings, BC is not the main focus, but if anyone has a concern, or a question there are a dozen of us there for opinions. Today, we were comparing "Dog Ears", physically comparing them, because one member thought she was the only one who had one. Shirts were up and bras pulled down, to compare. As I said, not for everyone, but believe me, we all feel more "normal" because of the openness of this group.

    I really hope you can find a way to feel better, I wish you could join us!  ((((((((((HUGS)))))))))Lily.

  • Lily55
    Lily55 Member Posts: 3,534
    edited May 2013

    Thank you for caring, I so wish there was a group but there isnt......i have a therapist but that is not enough, my partner does not have much emotional intelligence, i just heard my neighour died of breast cancer today and he has not even thought to see how i am, which is shaky inside, she was away when it happened......not been around for months

  • Colt45
    Colt45 Member Posts: 771
    edited May 2013

    Lily, I just want to say that you're in our prayers. You deserve relief. God bless you.

  • Lily55
    Lily55 Member Posts: 3,534
    edited May 2013

    Aww thank you Colt, you are such a kind man

  • Nel138281
    Nel138281 Member Posts: 2,124
    edited May 2013

    Lily,

    I just want ot say ditto to what others have said before me.   If the therapist does not seem to be a good match,might be time to think about changing.  I would also recommend seeing a psychiatrist re: some meds fro depression and or anxiety.  They won't resolve all the issues you are experiencing, but will raise the floor from which you can work.   I would search high and low to find a group of some sort that you could join.  I have a group for my particulary type of BC, it only meets every other month, but is a wonderful connection.  There is also a thread here "A rant, I look for other flat chested women"   There are amazing women all struggling with the same issues 

    Be well and stay in touch

    Nel

  • mrenee68
    mrenee68 Member Posts: 383
    edited May 2013

    Lily, I'm so sorry you are feeling this way. Please hang in there tomorrow is a new day with the opportunity for new feelings. Remember we are more than just what the outside of our bodies show. We are good people inside we just need to find peace with how are outsides look. ((Hugs))

  • nurseronda10
    nurseronda10 Member Posts: 209
    edited May 2013

     I don't think anyone who has had breast cancer is the same person mentally or physically and we all suffer to some extent.   One thing that helped me is having reconstruction.  I waited 18 months after mastectomy to begin the process.  Looking at my sunken in chest was a constant reminder that I had breast cancer.  Initially I thought if I gave myself enough time that I would get used to the prosthesis, but it was a pain in the butt and I was so self conscious when it came to putting on a swimsuit or wearing racer back cycling tops.  So, after going through one summer with a prosthesis, I decided reconstruction was for me and I am so glad I had it done.  I have regained my confidence.  

    Definitely not trying to push reconstruction but wanted to let you know how much it helped me emotionally.  I am still not 100% happy and care free and don't suppose I will ever be my "old" self.  I am so thankful to be here but it is easy to get depressed.  Just hard to describe so I know exactly where you are coming from.  

    Praying better days are ahead for you!

  • Lily55
    Lily55 Member Posts: 3,534
    edited May 2013

    Thank you - i have looked up to three hours drive away in all directions and there are no bc groups, the only spanish group is mastectomized women, and they pose for photos in the newspapers......i did contact them for info and had no response but my gut says i will not find sensitivity there! When i mentioned my feelings and need for reconstruction at the hospital i was barked at " well you are alive arent you......"......



    I know i will not feel ok without a reconstruction but right now the area is not recovered enough from radiotherapy for me to start really pushing for it......i wish i had the confidence to go flat but i am too sensitive for that.....but i have been told they will only do lat dorsi but i do not have any tissue there so they will not do anything.......



    I am getting on with life and dont sit wallowing but i have a constant pool of sadness and hollowness in my core that never goes away

  • Moiralf
    Moiralf Member Posts: 1,056
    edited May 2013

    Oh Lily,

    You are a strong and beautiful woman. I don't know you at all but I believe each person no matter what is beautiful. It has to come from within though. You have to look at yourself and say "I'm am worth it, I am beautiful". Cancer is not who I am but something that happened to me.Sometimes you have to keep saying it until it becomes true.

    I had a mast and no reconstruction 5 years ago. I was stage 4 from dx and I thought they just wouldn't waste money on someone who was dying anyway. But in NZ the public health system is over loaded and one thing they have decided to save money on is reconstructions for mast.

    I found something that helped me accept myself more was when I had to put lotion on my chest for rads. I looked in the mirror and slowly rub the lotion into my skin. It helped me relate to this new shape that didn't belong to me. It took a while but in the end I could acknowledge this was how it was going to be and I could be proud of what I had been though. My breasts were not all of me and I had a lot to offer that had nothing to do with breasts.

    Lift your head, take a deep breath and love yourself, then step out and if anyone says anything(and they probably won't) who are they to find fault.

    I can now go swimming without a prosthetic and just flat on one side. No-one says anything and if they did I would tell them I had cancer and I'm not ashamed of that. You have nothing to be ashamed about and your body is not all you are.

    Remember too I am 5 years out and am a stroppy opinionated woman who doesn't hide. Actually I'm quite shy but have learnt that I am good enough the way I am and no-one has the right to take anything off me.

    You are still grieving and coming to terms with the changes. This is hard work but you can do it. Coming here is it's own therapy if you can't find a support group. I am a strong believer in counselling so maybe you could try again to find someone who has more understanding of what you are going though.

    If you arn't already I would also suggest maybe anti-depressants for a while. That sadness and hollow feeling is terrible to live with and yes I did feel that to. Plus panic attacks and anxiety. I needed extra help for a while and again I don't feel weak or lacking for doing so. Whatever it takes to get back to something called normal and looking forward rather than back. Time is maybe the greatest healer but getting though each day matters too. Don't forget that many of us also use some help sleeping and what a difference being able to get a decent nights sleep makes.

    Love yourself and lift your head and chest out and off you go.

    All the very best

    Moira

  • Lily55
    Lily55 Member Posts: 3,534
    edited May 2013

    Thank you Moira, its now one month since i took myself off letrozole and its like a heavy cloud is beginning to lift......a dilemma for the future re going back on but it clearly has a lot to answer for in terms of how i feel......i can keep my distraught feelings at bay a lot more right now and even have days i dont think about it - not feeling about 80 has something to do with that i think!



    Your support and comments is so valuable - i feel angry now that the most important thing for me is something that makes me feel lousy and i was told i need it for ten years......

  • Moderators
    Moderators Member Posts: 25,912
    edited May 2013

    Lily, you mentioned Spanish groups - have you visited the Spanish-language discussion boards of Breastcancer.org? Some of the members there are in Spain, and may be able to suggest local/regional support groups for you - or maybe connect with someone you can meet.

    Best wishes
    • Your Mods

  • BrooksideVT
    BrooksideVT Member Posts: 2,211
    edited May 2013

    Lily, many years ago, when I was trapped in suburbia with a 15 month-old, and desperate for other young mothers for companionship, I put an ad in the local free newspaper, asking for mothers interested in a playgroup.  Five responded. We met, we shared, we bonded. 

    Have you thought of starting your own breast cancer support group?  You could meet in your home, the local McDonalds, the senior center, the library.  Your hospital might very well allow space for you to gather and might even provide a nurse or social worker to help you get organized.  You can be absolutely certain there are others near you who need you as much as you need them.  It's just a matter of you finding one another.

  • gonegirl
    gonegirl Member Posts: 1,871
    edited May 2013

    Moira. Your words are always kind and incredible.



    Brookside, that is a great idea.



    Lily, I'm in a similar state. I'm learning it is a sad but normal part of BC. I went through 5 months of weekly taxol then had a mastectomy with reconstruction that caused immense muscle pain for months. When the heavy duty physical therapy finally got the pain down to non life threatening, all the emotions of what the hell just happened rolled into me. It's been nasty.



    Added to this was that I couldn't afford a counselor because of the cost of the PT. I've been on these boards a lot, finally am able to afford a counselor and called breast cancer organizations to ask about support they might have. You're in England? Maybe look up BC organizations in your country and call. Many of them have different types of support. One here in the US called Sharsheret has been a life saver for me. May they all go straight to Heaven.



    I'm so glad you're here talking. Breast cancer is not for sissies and isn't something to go through alone. It just sucks.

  • Moiralf
    Moiralf Member Posts: 1,056
    edited May 2013

    Lily, 

    Have you spoken to your onc about this. Femara can have that effect on some women. I'm on it but I have no Ses at all. Believe me I know how lucky I am. I was on Tamox for 2 1/2 years and did that ok too. There are a couple of other options that might be easier for you and still help to prevent any possible recurrence. Not trying to scare you at all but make sure you have all the facts and understand the pros and cons of not taking some sort of AIs. Your onc will want to know and keep a close eye on you and may do more scans and tests if you don't stay on them. Just be aware of the risks and be prepared to accept what could happen. Not saying you shouldn't do it, as you say, you are starting to feel better and being off them is improving your quality of life. You are good at research and will know how to get all the facts. You are in control of making these decisions and they are yours to make. 

    Moira

  • yemaya
    yemaya Member Posts: 20
    edited May 2013

    Hi Lily,

    I agree w/the ladies here. A good therapist can help sort out these miserable feelings. I hate this friggin disease!

    Hang in there. We are with you. This is a great community of amazing women and you are one of them :)

    (((Hugs)))

  • Lily55
    Lily55 Member Posts: 3,534
    edited May 2013

    THank you all for your replies......I am finally feeling a lot more like myself and now know for sure a lot of my misery was the femara.......I am very reluctant to go back on it and feel horrible again.....but I know I need to do something, for now am just pleased to be getting some decent sleep.....I do have a therapist but dont really need it while i feel like this..!!!  Back on the hormones I am a shadow of misery compared to me now!!

    Big decisions....

  • gonegirl
    gonegirl Member Posts: 1,871
    edited May 2013

    Lily, glad you feel better. Perhaps talk to your doctor about going on to an AI instead, as Moira suggested. Being Stage IV would throw you right on back into depression, I think. It certainly has done bad things to my mental health.

  • Lily55
    Lily55 Member Posts: 3,534
    edited May 2013

    I was on Femara (letrozole) which is an AI, I am looking in to reduced dose of letrozole or changing to anastrazole or exemestane.......but my worry is I am VERY sensitive to loads of every day drugs so a bit concerned I will not find one that works and allows quality of life as I do want to protect myself as much as possible.

    Gritgirl - anything I can help with?  I do know an ethical centre that tests your tumour cells against specific chemotherapy agents so you find out which ones they respond to......but that may not be your thing........I send you calm thought from my hormonally un polluted self!!! (for now!)

  • gonegirl
    gonegirl Member Posts: 1,871
    edited May 2013

    Lily, I am lucky at this moment in that I am stable. Taxol worked for me.  The next chemo my doctor tells me will come with be what was called TDM-1, now called Kadycla.  It is Herceptin combined with a chemo agent so targets only the cancer cell. I am praying and knocking on wood that I won't need it, but that means I have to stay lucky.

    And I very much understand quality of life.  I am very focused on that.

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