The Hermit Club

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  • wallan
    wallan Member Posts: 192

    Thats awesome Mommyof2... I need to learn that kind of serenity.

    wallan

  • m0mmyof3
    m0mmyof3 Member Posts: 9,836

    I had to remind myself of something my maternal grandmother used to tell us. Her mantra was "God only gives you what He thinks you can handle."

  • jazzygirl
    jazzygirl Member Posts: 11,986

    Wallen- glad we can help here. None of this is easy and no one understands this better than those of us who have been there.

    Hermits was my home thread during my initial dx and treatment, and wonderful ladies here. Teka is a long timer, Mommy has been here with us for awhile too and know her from other places too. Magiclight and others are have been here awhile too. This is a slower moving thread but we are often watching, reading and ready to help our sisters!

    I am with you on the check list. Still drinking my coffee!

  • 6feetover
    6feetover Member Posts: 97

    I try to stay in the sunshine; I will myself to not "go down the rabbit hole." And then I have days, like today, where the terror breaks through, overwhelming and suffocating, and threatens to create a level of panic in me that borders on hysteria. Naturally, it occurs while I'm in the restroom at work (at a job I just landed in December after having been unable to work or to do much of anything for 1.5 years because of the side effects from the chemo). When I mentioned my worsening sadness and fear to my onco team, I was mailed a pamphlet from my cancer center's survivorship program, which offers support groups and the like. I...don't really think that's going to cut it. I'm already on an antidepressant; if not for the meds, I'd probably have needed a rubber room when I was diagnosed. Perhaps I need constant sedation, so I can't think...

  • faith-840
    faith-840 Member Posts: 926

    Teka,I love the picture you posted of the circles of women. I have several women friends who I sing in a choir with and this picture really spoke to me. One of them is close to death from a different cancer and it seemed so appropriate right now.

    Faith (in the future

  • Fotheringay
    Fotheringay Member Posts: 50

    Hi Wallen,

    I'm a first-timer, and I recall how devastated I was. It was not a time when being a hermit by nature was an asset.

    I'm so sorry that you have to deal with a recurrence. I'm glad you came here to talk about your feelings and be heard.

    All I have to offer is that when I was at my emotional bottom, I did a few nice things for myself... I bought some luscious faux fur pillows for my couch and a matching throw. I got a pedicure, something I never splurge on. I bought some expensive face cream. I did some "nesting" self care things for ME. I'm not one to run out and ask for hugs and help from other people.

    I was able to get appointments with a psychologist, FREE, through the cancer system of I care I was getting my treatments from. I hope you can get some professional help as well (if you are comfortable with it) to give you a safe place to vent everything you are feeling. It's so easy to fall down the rabbithole of google searches!

    (((hugs)))

    Carrie

  • wallan
    wallan Member Posts: 192

    Hi ladies:

    Thanks again for your ongoing amazing support. I have actually requested to speak with a social worker at the cancer centre. I don't have much support at home. Acquaintances have commented to me "I hope you have lots of family and friends support to get thru this" and I think to myself not really. My husband can't handle it and my immediate family lives across the country. I come here to vent. Just like last time. I feel sorry for myself that i don't have family support and that makes it worse. So I thought I better get some professional help because i am going end up in the local mental hospital.

    adarkadaptedi: I understand your fear .. man oh man... and it always strikes in the most inopportune places and times for me too. But I bet for you that as time goes by, those emotions will fade. They did for me the first time. Your breast cancer will go to the back of your mind and yes, will always be there, but not as profoundly in your face. You will feel like a survivor.

    wallan

  • cliff
    cliff Member Posts: 86

    again, I am fortunate, I can still work, and have a job. without all the friends and family around, I tend to sit in the basement watching tv all day. I have lots of hobbies, but they are getting neglected.

  • jazzygirl
    jazzygirl Member Posts: 11,986

    Wallan- I think meeting with a social worker is a great idea. I bet he/she may be able to help you identify some other resources to help you through treatment and all that goes with it. I looked around after I got diagnosed and figured out quickly who was going to help and who everyone else was. You need to find the people who can help you and focus there to get through.

    Please don't beat yourself up for what you have or don't have. I have little family left and they don't live around me either. I had no family around me when I went through treatment. I did have some outstanding friends and other support systems (like this site) to get me through. I think people who are blessed with large families who are able to help are truly lucky when cancer strikes. I know many who don't have that don't have people who will help either. Not everyone does the cancer thing, so I have learned......

    If I can give you any advice about people to save you from feeling badly about things, don't put a lot of energy into acquaintances during this time. I did not tell a lot of people for professional reasons (self employed), but also feel many people just say things like you heard "good luck with that, hope you will have everything you need, blah, blah, blah" When people say that, they are telling you they are not going to offer any help. That is what you need to be listening for. You can park those people for as long as you want. We don't have to make others feel okay about what is happening to us. We have to focus on getting well.

    My experience with this is those who have had it (bc survivors) and those who have supported others with it are your best allies. This is something only people who have witnessed things understand. We are not scared of it, we have been there! There may be some support groups for rides in your area or other resources with people who will show up to help without any pressure.

    How else can we help you friend?

    Cliff- I am sorry things are hard for you. Are you feeling okay physically?

  • m0mmyof3
    m0mmyof3 Member Posts: 9,836

    Had nearly 60 here today

  • cliff
    cliff Member Posts: 86

    jazzygirl, as well as can be expected with diabetic neuropathy, congestive heart failure, a cramp right now where my left breast used to be, and lymphederma. so all in all, nolt too bad. just waiting for the next disaster to come along. whatever it is, I'll beat it too. I have a new granddaughter to spoil.

  • jazzygirl
    jazzygirl Member Posts: 11,986

    Cliff- so much going on sister.

    Tell us more about your grand daughter? Any pics you can share?

  • cliff
    cliff Member Posts: 86
    image
  • cliff
    cliff Member Posts: 86

    sorry, no text n picture, this is Daniella Rose, in the delivery room. you might notice the space behind my pocket.

  • jazzygirl
    jazzygirl Member Posts: 11,986

    Beautiful little girl Cliff



  • Fotheringay
    Fotheringay Member Posts: 50

    What a sweet blessing, Cliff!


  • cliff
    cliff Member Posts: 86

    I guess the first grand child is the best. she sure is a sweet little girl. held her for a half hour last night, she is quiet and smiles once in a while when her grandpa tickles her belly. shes the reason I will have to ignore side effects and get rid of this cancer.

  • jazzygirl
    jazzygirl Member Posts: 11,986

    Cliff- she is most certainly a very good reason to keep moving forward to live as best every day as you can. Do you get to see her often?

  • Lily55
    Lily55 Member Posts: 1,748

    Hey Cliff

    I did not notice the space at all actually but I know that won´t help really as people say it to me and it does not change how I feel as a mutilated person.......

    Wallan - I too had inadequate support from my now ex.........and others, was brutal to find how people bail out on you when you are in hell....in the end I crashed and got a therapist through a local cáncer charity. Without her I would have gone totally under I think, I still see her, sometimes weekly, sometimes fortnightly....she has been a Godsend. I make myself go out and do things when really all I want to do is hide away and one thing I cannot get rid of is that I now feel SO different from other people, by virtue of my body and health status.  I have no tolerance for small talk, or people who obsess about utterly trivial things.........and am very choosy in what I do now........but there are still times when I feel heavy emotionally and at the moment I think I am a bit depressed as other health things going on too...........Cancer sucks a lot out of us.......people out of your life, your trust in your own life, the future you thought you had, Jobs, genuine peace of mind etcc.....its no wonder we need help to get to grips with it.................and if anyone dares to say the positivity mantra I go ballistic........that is another cruel burden dumped on cáncer sufferers.........and a study showed that expressing your emotions is far more important than positive mental attitude and those who did emote  had the lowest recurrence rate.....

    Take care everyone

  • m0mmyof3
    m0mmyof3 Member Posts: 9,836

    My case was a bit different had loads of support from friends and most of my family. My mom tried to tell me several times that my doctors didn't know what they were doing and that I needed to go to her doctors. My mom finally got the message that my doctors knew what they were doing when she got to meet a couple of them and saw for herself that I was getting the best care under them. Everyone said I needed to find a support group to help me deal with going through this and it took me a while to get off my duff and join here but I am ever so glad I did. Even my doctors said that just joining here back when I did helped me immensely.

  • cliff
    cliff Member Posts: 86

    My mom and dad have been gone for quite a few years. fortunately I have a great wife and two great kids. there is no replacement for a great family, I hate to think what would have happened if I didn't have them. first granddaughter coming along during this mess helped a lot too. makes me appreciate them more than before.

  • wallan
    wallan Member Posts: 192

    Cliff: Your grand daughter is beautiful! Congratulations!! This will lift your spirits.

    Lily55: You are so right in that some people bail on you when you are in hell. I had this the first time around and it Shocked me. Members of my own family who I believed would be there for me no matter what, disappeared. And you are right about the rest too. Cancer does steal or at least change everything in your life. I hope I get into the social worker at the cancer centre soon to try and process all this.

    Mommyof2: I am happy to hear you have loads of support. I like stories like that. Still though, you recognized you need different kind of support from people who have gone thru it. Me too. People who have gone thru it are the most valuable, helpful of all support. They GET IT. This is why I love these boards. And why I am so open and honest about my experience and feelings here. I feel truly understood and supported here and I can get it out. I get guidance and suggestions on how to cope and I get tons of hope. Because seeing others and what they struggle with is inspiring and gives me hope and strength that I can do it too.

    Thanks to all of you. HUGS.

  • jazzygirl
    jazzygirl Member Posts: 11,986

    I too had people judge, dismiss, and bail on me. Some who had been good around other situations, who really surprised me. I let go of a few of them, don't talk about my health much with a few others. I know next time who I won't be telling.

    Wallen- you are sounding a lot better and can tell the resources you will be meeting with feel right to you. Let us know how it goes for you and know we are here for you too!

    Cliff- you sound like you have a lovely family!

    Hi Mommy!



  • m0mmyof3
    m0mmyof3 Member Posts: 9,836

    Mom has been through her own fight with colon cancer over a decade ago but she failed to realize that things have changed a bit from when she went through it. Still knowing what she went through kind of prepared me for my own. I am not very outgoing in large crowds so I love having this kind of support group here.

  • jazzygirl
    jazzygirl Member Posts: 11,986

    Mommy- my older sister had bc at the same time, but we had different kinds of breast cancer and thus different treatments. She started getting too involved in my treatment recommendations (older sister stuff and she is a doctor too) and started talking to her oncologist about my case. Totally pissed me off and told her to butt out and focus on her own plan of care.

    A mutual friend of hers and mine who lives here helped me through the worst of things (also and MD) and told me that she would do exactly the same thing that was being recommended for me. She sat in all the oncology discussions with me, as well as with the surgeon and post surgery visits. Well, my sister and I survived that time, but bossy older sisters never do change. We are both doing okay these days.

    Your doctors have to be the ones to advise you on the best treatment. Mommy, your point is a good one that even people who have had cancer cannot advise another on what to. The nice thing about this site is being able to talk to other women who have had the chemo, rads, surgeries, recon, who take the AIs. Thank god for BCO!

  • m0mmyof3
    m0mmyof3 Member Posts: 9,836

    Indeed!!!!

  • Lily55
    Lily55 Member Posts: 1,748

    Every now and then I try and talk to Friends but have to say I find it pretty dispiriting as they just do NOT get it, especially how I feel over the state of my body..........I don´t want to be Miss Negative but am finding it harder and harder to feel ok and can sense I am feeling lower in mood.........I have other, unrelated, health challenges too and over last few months have added four different specialists to my list for various things......and feel pretty overwhemed at times.........as all are incurable and just things you need to live with......I always imagined myself being fit and kind of fab as I aged, but decrepitude seems to be taking over........although I fight it..............

    Being someone who has had cáncer is a lonely place in my experience.......

  • everymoment
    everymoment Member Posts: 6,656

    Lily...Was today one of those days you tried to talk with friends who just did not get it? I and I expect many others know that feeling all too well. It is like you want a nourishing interchange and all you get is a Twinkie which leave one empty. Ick!! Having so many different doctors to check in with can be so exhausting. Sometimes it is OK to postpone what I call a check in appointment where nothing is done and no change has occurred. I think the doctor has to schedule a reappointment as that is what s/he is obliged to do, but I do not have a similar obligation and thus often reschedule those for a later date to avoid appointment overload. Maybe taking some time for a personal day where you do no judge yourself so harshly. Just for today you are OK, Just for today I am OK. I know I sure am not what I once was, nor how I envisioned myself aging. Maybe there should be a 'Be kind to yourself Sunday! Want to start it tomorrow?

  • Lily55
    Lily55 Member Posts: 1,748

    Yes it was, a few times recently and I wonder why I bother aterwards!!  Its not an option to re-schedule hospital appointents here unless you are too ill to attend, as its a public system.  Funny you picked up on me being tough on myself as my cáncer psychologist says the same thing and says other people with a lot less to deal with than me retreat in to their homes and being ill whereas I keep on going........Duracell battery style except my cells feel empty a lot more these days.....thank you for caring and I will try a be kind to myself day tomorrow.......

  • 6feetover
    6feetover Member Posts: 97

    Lily55: Yes, it IS a very, very lonely place. I said something to my oncologist after I'd been diagnosed that gave her pause: when I saw her while my breast lesions were still "precancerous," it was as though we could still relate, we were still part of the same group of women/humans who inevitably dealt with the usual things like job stress, annoying co-workers, bills...the humdrum, mundane aspects of "normal" life. Once I was diagnosed and we sat discussing my chemo and surgery options and what the treatment plan would like, I remarked that we were no longer on the same "side," as it were. Everything had changed for me with my diagnosis. I was now utterly separated from her and everyone else. I had something growing in my body that would kill me if not treated; I felt completely alien and "other" and totally on my own, even though I was surrounded by my doc and her team, my husband, etc. I've dealt with severe (mostly existential) depression and extreme anxiety since I was a kid; I've also got a mild form of autism. The cancer diagnosis was like being thrust into a live rendition of a horror movie. The fear is suffocating most of the time, and no one can help me with it because they don't understand.