Monday, August 15, 2011

Grrrr!!

I've been on the hunt for resources, support for the kids, for me, for Sean and I'm coming up empty.

There is a place here called Hearth Place that offers support to cancer patients and their families. I was certain they had a support group for kids whose parents have cancer (they did when my Dad was sick) but it doesn't appear that they do anymore. They did have some printable resources though, so I printed them for Mary (a bit too young for Emily)

It had a list of books that would be great for the girls so I looked at Chapters and guess what, Chapters has NO books to help kids with a parent with cancer. Some of them are available on Amazon so I'm going to order one in particular for Emily today.

Hearth Place has a support group for those newly diagnosed with breast cancer but it's an 8 week cycle and they are in week 6 I think. So I'm hoping to be able to register for the next cycle but I haven't heard back yet when that will start.

I want to avoid internet chat rooms and random websites for fear of false/misleading information and for my own sanity.

I'm going to browse through the Canadian Cancer Society site - hopefully they'll have something. Anything.

Emily went to a friends house yesterday. On the way there she asked Sean (again) why it is that whenever we have a family meeting someone is really sick or dying. He explained that it was just the easiest way to deal with it together.  I swear the next family meeting we have will be about something positive - my beating cancer! A family trip to Disney Land! This is my goal - a great family meeting.

This friend whose house she went to. She's the one whose Aunt had cancer. Em came home and told me right away that the Aunt had had breast cancer as well and what's more - she also had a mastectomy. Her friend said she'd been playing with the prosthetic breast once and it was really squishy. I get the sense that Emily felt really great hearing that. Emily knows the Aunt, she's there frequently so she sees how 'normal and healthy' she is. Truth be known I felt great hearing that she too had a mastectomy. I've met the Aunt several times too and it reassures me as well. I can beat this.

I was a little frustrated again yesterday with yet another suggestion that I have both breast removed. I want to set the record straight.

I am not opposed to the mastectomy at all. This isn't about vanity for me. Sure, I'm not thrilled about being less one (or two) boobs but I'll get prosthetics and maybe one day I'll get reconstructive surgery. I just want to be cancer free. I get that having both breasts removed may decrease my chances of it reoccurring in the other breast - MAY. It doesn't mean it will. I can still get breast cancer in the remaining tissue/cavity. Furthermore, while I understand I am entitled to tell my surgeon I would like them both taken off I am putting my trust in her and the other Dr's that she's conferred with that if it were something they felt was necessary, they would suggest it. Go flip through a book of breast cancer patient photos. Most of the women with mastectomies only have one gone - not both. Just because I have it in one doesn't mean I'll get it in the other and while I know there is a chance - there is also a chance Sean could get testicular cancer (his younger brother died from it some 30 year ago) does that mean Sean should cut his balls off?  I don't need my appendix and there is a chance I could one day get appendicitis - so should I get an appendectomy? I know this is slightly different than those examples but to me, it's more the same. I'm not cutting off my nose to spite my face. And if they later determine I need to have the left one removed then so be it. Hack it off Doc.

Don't get me wrong, I know these suggestions are coming from a place of love and concern and for wanting me to beat this but without sounding bitchy, it's not helping - it's just adding to my stress. Everyone knows I'm already second guessing a lot of my choices and while I'm not asking for people to blow sunshine up my ass and tell me I'm making a right choice if I'm clearly not,  at the end of the day 95% of my driving force in my choices comes from what my Dr thinks is best. She's the expert, not me.

Please don't misunderstand me - I have had nothing but love and support from every single person who knows. It is so true that in times like these you find out who your real friends are and I'm so happy to know that all the people who I thought (hoped) would be there for me really are. I do welcome input but please...please....if I don't ask for advice or suggestions...don't offer it. Sometimes I just want an ear. Sometimes I just want a hug. Sometimes I just want to have a conversation that has absolutely nothing to do with cancer. My SIL called me yesterday to talk iPods and it was fantastic! If I need advice or suggestions I will ask for it. I promise. There are several of you who have walked this road, either yourselves or with a loved one. Your advice and suggestions have been invaluable to me because you've been in the thick of it and are helping me prepare for what is to come.

I am re reading this and it sounds so bitchy. I really don't mean it to be that way. I don't want to alienate anyone because, as I said, everyone has been so fantastically supportive to me this past few weeks (and months for those who knew about the lumps pre diagnosis) but I'm already so on edge, terrified and unsure of what's ahead. I am trying to keep my stress levels to a minimum and like my brother said to me - trust my gut and trust my Dr's.  I love you all and thank you all so much for being there for and with me through all this.

So, today, I'm off for a long list of housekeeping items before the big day on Thursday. I'm tired already.

1 comment:

  1. You are not being bitchy and people will understand. Given the HUGE amount of stress you are under, it's more than fair to have a moment (or more) where that is how you feel. Don't apologize--and remember, it's your body and it's your decision. We all think we know what we'd do in situtations until we're actually in them, funny how different it is then. Letting people know what you need and how you are feeling is a good thing. People want to help, but it can be hard to know what to say or do. You won't alienate people by being honest, at least not the poeple who really love you and want to be there for you. Nobody else matters.
    Wish I could do more--but I'm here and you're there.
    You will get through this Cuz, I believe it.
    xo Sarah

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