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nicole_h's avatar
nicole_h
Member
11 years ago

frustrated

Hi all. Never really did start with a blog properly. Im still not sure if this is the way to make contacts but I need to talk to someone, anyone, regularly to compare experiences if nothing else. I don't have any contacts and dont know how to join a group let alone read other blogs. I need more support so I thought id try starting back at the beginning. I was diagnosed at 49 with 2 early bc lumps after self detection. I had mammogram and ultrasound & needle biopsies back on 18/5/14. I had 4 rounds of neoadjuvant chemotherapy in Orange,1hr away, and had complications nearly every cycle. Including hospitalisation for neutropenia. My sister also suddenly died during my second chemo. The grief consumed me whilst I tried to complete my next 2 cycles. Surgery was on 21/10/14 (lumpectomy and reduction ressection) which I was recovering well from when I had to go back for more surgery. The margins weren't clear enough and lymph nodes were involved. That was 4th Nov and I'm still recovering. Got an infection the drain came out yesterday after over 3 wks. Im seeing a surgeon on Monday or Tuesday to get the all clear for more chemo. Probably have to have the collection surgically removed as the drain was still60ml/day and needed to stay in but was irritating everything and making my infection and the pain worse. I'll then have 6 wks of radiation to finish off (if I make it that far!). I'm so sick of being told to stay positive through my journey. I find it really difficult to be positive. I'm bored, I'm sick of myself. I'm sick of being sick and bald. My hair is coming back like mottly grey carpet. I've been so unwell I haven't been able to do any simple daily tasks. I'm not even driving yet. I enjoy reading and crosswords but my eyesight has gotten so bad that if i can focus and even with glasses I get a headache. I'm still not that well but chemo is supposed to start next week. I'll see if I get any better support or follow up care this time. Couldn't have been any worse first time round. But I'll expect the worst but hope for the best from now on. Hopefully that attitude will help me cope better with the setbacks from here. Very teary all the time and if i ever get well enough to go out I feel too ugly to be seen in public without a wig and its now too hot for wig or scarf plus ill be losing my hair again in the next few weeks anyway. So no Christmas cheer for me. Can't afford to risk infection. If anybody has a similar story id love to hear from you and how you cope. Sick of being sick and useless. Nicole x

13 Replies

  • nicole_h's avatar
    nicole_h
    Member
    11 years ago
    You seem like a good woman that I can relate to. Look forward to reading your posts and hope tomorrow s news is as good as it can be. If not have a wine and we'll discuss it tomorrow. Cheers Nicole x
  • nicole_h's avatar
    nicole_h
    Member
    11 years ago
    Good luck tomorrow. Expect the worst but hope for the best I say. xxoo
  • shat's avatar
    shat
    Member
    11 years ago

    LOL! ..mental note to never use the word journey ever again!!!

    I have actually had some good news that I may only require lumpectomy vs mastectomy after responding well to neo chemo. I will know more after tomorrow's ultrasound. Before this news I was also in constant tears so I am hoping...

    yeh I might hold off for a while with the gory surgery details..ignorance is bliss afterall. But I will probably have a few questions  closer to DDay and I think I can trust you not to sugarcoat it....a vastly underated quality in my book.:). 

    I look forward to venting to you soon.

    shat

    shat

     

  • Deanne's avatar
    Deanne
    Member
    11 years ago
    It shouldn't but it unfortunately can be hard to find a counsellor that you can feel comfortable with and i cannot imagine why they thought it would ever be a good idea to try this while you were actually having chemo! I have heard mostly good reports about the phone counseling from the Cancer Council so I hope that you find it helpful if you get the opportunity. To make a contact you just click on the person's profile picture or their profile name and it will take you to their page. Under their profile pic it will have 'Add as a contact' and 'Send a message' in pink. You just click on these to either send a personal message or to request them as a contact. Personal messages can only be seen by the two people involved. Hope this helps. Deanne xxx
  • nicole_h's avatar
    nicole_h
    Member
    11 years ago

    Hi Deanne,

    I've seen your face before.  i dont know how to make contacts or join groups on this site sorry.  Thanks for your advice.  I have tried counselling once but it didn't work out mainly because I'd just finished privately venting to her about my life and my husband and he walked in and she told him what I'd said.  We started arguing, she left, we didn't speak for a week.  Not helpful.  I have organised a session with a different counsellor this time on my first chemo.  Don't expect too much as it will be hard to talk sitting in a chair, hooked up to a drip for 6 hrs, with husband, nurse and 9 other patients & nurses about.

     I've actually had that sort of help all along, useless.  I'm treating this second lot of chemo as a second chance for them to get it right.  Already I've had the breast care nurse ring me, the chemo nurse ring and book me in and the surgeon has asked to see me., as well as my radiation therapist Rod calling to check on me.   All firsts for me that anyone even knows i'm coming let alone my number.  Oh even the dietician contacted me.  All a bit late but better late than never I spose.

    Maybe in a year or two when I'm out the other side of all this treatment and my hair is back I might finally get my life back.  But at the moment that all seems too far away to think about.  So I'm just going day by day for now and expecting the worst but hope for the best.

    I hadn't thought of Cancer Council for counselling so thanks for that tip I might just try them when I can get some time alone.

    Thanks for listening & hearing me.  Nicole x

  • nicole_h's avatar
    nicole_h
    Member
    11 years ago

    Well Hi shat. Thanks for that.  You know it's even nice just to have someone agree with me and not try & spin it into positive.  What do you think of the word"journey"?  It's more like an ordeal to me.  A journey sounds like a trip or adventure that I would love instead of the crap I have.  

    Good luck with your surgery.  Is it breast conserving or mastectomy.  I can talk to you about what to look fwd to if you like.  Or you can leave it a mystery if you'd rather.  Either way I'm happy to hear you vent if you need.

    Nicole x

  • shat's avatar
    shat
    Member
    11 years ago

    dam right Nicole, I've always thought being positive is counterintuitive.  It only makes other people feel better if you are positive which is why they always want you to be that way. It might work for some and that's great but I find it doesn't prepare you at all if things dont turn out well and with bc, well it really just keeps on giving doesn't it?

    I really admire you, even though I know you have no choice. I have not had bad side effects or the death of someone close, but still feel down in the dumps allot. Still awaiting the joys of surgery, 2 more chemos, radiation etc..

    btw I dont think its stupid that you are looking forward to the radiation now. feeling connected to/understood by people can be a small saviour and you can find it in the strangest of places. 

    stay in touch

    shat

  • shat's avatar
    shat
    Member
    11 years ago

    dam right Nicole, I've always thought being positive is counterintuitive.  It only makes other people feel better if you are positive which is why they always want you to be that way. It might work for some and that's great but I find it doesn't prepare you at all if things dont turn out well and with bc, well it really just keeps on giving doesn't it?

    I really admire you, even though I know you have no choice. I have not had bad side effects or the death of someone close, but still feel down in the dumps allot. Still awaiting the joys of surgery, 2 more chemos, radiation etc..

    btw I dont think its stupid that you are looking forward to the radiation now. feeling connected to/understood by people can be a small saviour and you can find it in the strangest of places. 

    stay in touch

    shat