Please, God. Enough Already.

gonegirl

Please, God. Enough Already.

gonegirl

So I was diagnosed with Stage IV breast cancer to the liver February 2012.  5 solid months of weekly Taxol later, and I was nearly disabled.  I told my doctor I couldn't do the chemo anymore. Frankly, I was starting to think that life was not worth living if it was going to be me laying on the couch, disabled.

I come off the chemo in June 2012 and am very, very lucky that the cancer has been stable since.  I am very, very lucky. I know this.  I'm desperately trying to not focus on the idea of it going unstable.

November 2012 I finally have a double mastectomy.  I was damned if I was going to leave the cancer pockets on my body to produce more of this crap. I opted for immediate reconstruction. There was my mistake. Mastectomy good, reconstruction bad. For 3 months after the reconstruction, I was in constant and chronic pain.  Again, I was starting to think life was not worth living.  I finally pushed my plastic surgeon to give me a stronger muscle relaxant, and found a very good physical therapist who has worked on every muscle to loosen and release the spasmed pain (pectoral, pectoral minor, serratus, clavicle, scapular).  I am still in pain but not even close to what I was.

January 2013 my counselor, who has been key to helping me through this, develops cancer himself.  I become his cancer angel, meaning I lose major support.  Then I cannot afford to find another therapist due to the expensive PT I am receiving and to the fact that any decent counselor in the Washington, DC area will not take insurance, meaing I would have to float the money for counseling.  I put that on hold.

Now March 2013.  Many of my main support people seem to be unavailable due to life circumstances, and my ex boyfriend who offered some support via email, decides that I'm not showing enough gratitude so decides to tell me how horrible my death will be and how I could be in that spot, so should be grateful. Needless to say, he is out of the picture. 

I am doing my best to find support, but feel increasingly isolated and not sure who I can talk to.  One challenge is that people who haven't been through this, or something similar, can say things that do more harm than good.  On top of this, last week someone on the Stage IV board who I knew died. That was my first experience with someone dying who has the same thing I do.  It was sad and it was terrifying all at once.  I want to live my life while I'm alive, and still, it's hard to deal with this constant cancer in my life.  I'd love to move on.

This feels like a never-ending trip through Hell.  I don't believe that God does these things to people, btw.  And I certainly don't see this as a cosmic lesson.  But I do want a break.  I'm realizing recently just how hurt, sad and angry I am about all of this.

I am angry that I am Stage IV.

I'm pissed as hell that my gynecologist had dropped me down to mammograms every two years.  Maybe they could have found this crap a year earlier and I wouldn't have gone Stage IV.

I am mad as hell and so, so sad that I have had to endure disabling chemotherapy, and that I stupidly chose to get reconstruction, resulting in immense pain that I could have avoided (really pissed about that).

And I am so, so sad that I have no idea how to get support or who to turn to.  I do my best to reach out, and keep on running up against people who are just too busy or wrapped up in their own life crisis.  I would like to go one week without someone saying something stupid like my ex boyfriend did, or someone dying.  I just want a break.

I want to pretend that this cancer is no longer there, that I will never have to deal with it again.  I want the feeling in my fingers and hands to come back.  I want my muscles to stop gripping in such a painful way.  I want my goddamn life back.   I am so tired of this.  I am f'ing tired of this. And I am mad as hell, which usually means I'm sad as hell.  I feel like throwing things.  I feel like knocking down walls with sledge hammers.  I feel like kicking tires. And after I finish all the kicking and screaming, I just want someone to hold me and let me cry.  Because I'm just so sad.

Screw this cancer. Just screw it.

rozem

gritgirl - im so so sorry you are feeling this way.    You answered my post on the mastectomy/expander hell that i have been feeling and i understand where you are coming from on that front.  It has been a nightmare.  If  one more person tells me that god only gives us what we can handle i am going to choke them.  God must have horribly overestimated my abilities. 

you certainly have had more than what you or anyone deserves - im in Canada and not the US so not sure how it all works there but is there any social programs you can access through ACS or other organizations to help find another counsellor? or subsidized PT?  Can you reach out to someone on this board that lives in your area that can offer a supportive ear?  The reason a lot of ladies are on this board is not only to get support but to help other women. 

I wish i was closer my dear sister, I would certainly give you that big hug and let you get it all out

hugs from the north

gonegirl

Rozem. Thank you so much for your kind words. Seems like you've had similar experience with the reconstruction. That part has made this much worse. I'm doing pt with lots of work on muscles. Insurance covers that but co pay for twice a week, I can't afford anything else. A group called Sharsheret that supports women with breast and ovarian cancer has been kindly providing weekly calls with one of their social workers. But that's not long term. Support groups around here are either during day or just after work. Was thinking of starting my own support group a little later in evening. Either way I keep trying things.



But just hearing from others here makes a big difference. So thank you for responding. Means a lot.

fredntan

Hi,

where in the hell did you find PT like that. I am down in Fredericksburg. I have some of the pain and tightness. it isn't that bad, but have went to PT locally. its allways the same. I go through the exercizes then they spend like 5 min stretching my arm out.

I went to my new MO np today. the assistant seemed surprised my BP was sky high. going over there makes my bp go up. the new NP said "oh you are on a lot of supplements" I want my 30 bucks back.

I have hard time relating to my old friends. actually a lot of them fell off face of earth. its really hard for people to relate to this kind of thing. not many people my age has seen there life flash before there eyes. Big hug sweetheart

ldesim

Gritgirl, I think starting your own support group is a fantastic idea.  You should follow up on that, I think it will do a world of good.

I have just recently discovered this site and I have found it to be not only informative as I have been finding it hard to just take everything in the doctors have said, but I have also found the community here to be amazingly supportive and for the first time since this nightmare has started for me, I have found comfort to know that I am not alone in my experiences and emotions. 

Big hugs to you.

gonegirl

Fredntan. I see Marisa at WWW.bodyconnectpt.com. she does deep tissue and myofacial (sp) release. That was the key. Believe me. I'd already seen two other physical therapists who did nothing for me.



Thank you everyone for your wonderful support. Some folks who say weird things to me mean well, but don't get it. You all do. God bless you.

lemon68

Gritgirl

I am not going to pretend I know how you feel but I do know you deserve to scream yell and do whatever the hell makes you feel even the tiniest bit better. I can only send love and prayer to you in hopes you get to Take Back your Life in some way that you are happy with..

Much love to you- Lemon

lemon68

Gritgirl

I am not going to pretend I know how you feel but I do know you deserve to scream yell and do whatever the hell makes you feel even the tiniest bit better. I can only send love and prayer to you in hopes you get to Take Back your Life in some way that you are happy with..

Much love to you- Lemon

Moiralf

Hey Gritgirl,

Rage is good. I think we need to have some way of getting rid of all the anger this disease causes.

It is a form of grief we go though. But I think we might go through this process a number of times over a number of different parts of it all.

You have to let go of the anger about things you can't change. Having that mammo might not have found it any earlier. Mine was not dx on one years mammo and was there bold as brass the next year. Ok, did no-one read it properly or what. The lump was there both years so what changed???  In the end it didn't change what was happening so I chose to not waste energy on it. Done is done.

I bet you also made the best decision you could regarding the reconstruction, with the knowledge you had.Being in pain and having to work so hard to get any relief is energy sapping. 

Extra annoying that you lost your therapist and can't really even be mad about it. that sucks, actually it all sucks doesn't it.

Yep, ignore the ex, what goes around, comes around.

Starting your own group might be great, it could be about cancer or more general support and enjoyment of being with friends.

You could always get a punching bag and a bat and whack the sh*t out of it when you feel the need. Screaming and yelling at the same time will let it all out. Might need to warn the neighbours before you start.

Dig in, head down and plough on. 

Moira

Moderators

gritgirl, we're sad too that you're dealing with all this, but relieved that you're part of this amazing community. You'll always find support here.

renee47

Gritgirl,

My prayers for God's strength and comfort and healing.  Sorry to hear that you have had to deal with so much!  Start that support group!  It's a wonderful positive idea!  Remember all the people God brings your way to support and make up for all the people who get in your way.  Love and prayers from Indiana.

gonegirl

thanks everyone for your incredible support. yeah, moira, you're right.  i've had these feelings at various points on this journey. difference is that in the past i had more folks to talk to about this.  being able to talk and cry with someone has usually been the biggest help for me.  farmerlucydaisy suggested stephen ministries to me, so i'm checking that out (thanks farmerlucydaisy).  i also have an imerman angel, which has been a huge help, but lately she's gone unavailable as well.  sadly, my recent feelings have been there, and i just haven't been able to find the support this time.

thank you all. this means so much to me.

Lily55

I just want to say that a friend of mine died from BC at xmas and we had been great supports to each other and it is a real scar y gut wrenching slap in the face shock when that happens so i can really share that experience with you. Hope you find some support soon - terrible luck your therapist got little c too.......



Hope you are Ok with me responding

gonegirl

Lily:  I'm so sorry to hear of your loss. It does suck, doesn't it.