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All Topics → Forum: Relationships, Emotional Crises, Anxiety, and Depression → Topic: The Would Have or Should Have Thoughts :-(

Topic: The Would Have or Should Have Thoughts :-(

Forum: Relationships, Emotional Crises, Anxiety, and Depression — Meet and support others who are affected by these issues around breast cancer fears, diagnosis and treatment.

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Posted on: Jun 13, 2012 05:14 PM

Rockym wrote:

Anyone out there whose brain just keeps playing tricks on them?  I just don't get it.  This week will be 1 year since my dx and currently all my treatments are done.  I couldn't take Tamoxifen as it was making me nuts (but that is a whole different topic).  I had my surgery, chemo and rads, but now I keep trying to look back and make some order to all this.  For a while I was thinking that it was my Breast Surgeon's fault that I ended up with chemo.  Then my mind came up with some other situation where perhaps it was my fault I had to have chemo.  I have never denied I had cancer and I was never scared about it.  I handled it very well and then started to crash.  Somehow my head goes back to thinking I was overtreated.

I am a very analytical thinker and unfortunately, my mind will go back and say (no real voices :-)) if you didn't ask for this type of treatment, such and such wouln't have occurred and life would be different.  Then I even felt like my BS wasn't straight with me and choices were made that has left me questioning EVERYTHING.  My BS is truly a good person and I know this, but there is some weird stuff happening in my head.

Just when I thought I had a handle on things and talked with my counselor, friends, mom, etc., a new scenario popped up in my head.  I keep thinking that things my BS did or I did created my pathology report to be what it was instead of just accepting that it was a cancer with positive nodes and I made the treatment choices I made.  It's hard to explain and it's a bit obsessive, but it's there.  One day I'm feeling great and the next I'm a mess.  There is so much guilt on my part as to the effects my cancer dx and treatment has had on my kids (now almost 10 and 14) and my husband.

I did try antidepressants for a bit, but I was also on Ativan at the time and was having side effects from the antidepressants and had to go off.  I am now on very small amounts of Ativan and Valium to deal with my broken sleep, chemically induced menopause and anxiety, but THIS SUCKS!  I see a therapist, I have a good handful of people to talk to, I started to go back to the gym, but I am at a loss.

HOW MESSED UP AM I?????  How normal is it to want to blame someone or yourself?  I've asked a few BC survivors when do things get back to normal and they both said NEVER.  I don't believe that.  Life has to settle down again.  Anyway, please post and tell me if you have been in this boat.  One psychiatrist wanted to give me some very heavy meds recently and personally, I think she was the crazy one :-).  I am not psychotic, I'm frustrated, sad and confused.

Thanks for listening.

Just when I'm about to make ends meet, someone moves the ends.
Dx 6/13/2011, IDC, 1cm, Stage II, Grade 1, 2/6 nodes, ER+/PR+, HER2-
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Jun 13, 2012 06:52 PM Chickadee wrote:

Looking back, obsessively focusing on what if? To quote Dr Phil, " How's that working for ya?"

Perhaps you can focus on future events and plans, things you have to work on or help out with.

I've had a lot of awful circumstances in my life, but for whatever reason, I learned early that things would be different tomorrow and " this too shall pass". It has stood me well.

If you can, focus on the future, if that's too much of a struggle look for whatever help you can garner to get ack on even ground.

Dx 9/1/2009, IDC, 1cm, Stage IV, mets, ER+/PR+, HER2-
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Jun 13, 2012 10:39 PM Poppy wrote:

I already resoponded when I saw your dx... ours are virtually identical. I had a bilat mast (because of extensive dcis) and chemo, no rads.

While your BS could've had an impact on whether or not you had to have chemo I doubt that's the case. It's highly unlikely that your BS did such a s*** job that you needed to have chemo and rads to make up for it. It's highly likely that the protocol for your treatment was decided before you even went in for surgery, or if you didn't yet have an oncologist, was post-surgery based on your pathology/node involvement.

 And... did your oncologist give you the choice whether to have chemo or not? That's a horrible thing to saddle a scared patient with and I hope that wasn't your case. So your chemo is over - why are you dwelling on whether you should have had it or not? Did it leave you with permanent damage because then I'd understand. I did chemo between 7/05 - 10/05 and frankly, I barely remember it. Not because there were days I don't remember (lol) but because it's over. Almost as soon as it ended I couldn't remember what it felt like to be so tired I wanted to die. If treatment is in your past, be happy and don't second guess your treatment. Remember it only takes 1 cell to escape surgery. Rads and chemo are incredibly powerful tools in the fight.

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Jun 14, 2012 07:55 PM Rockym wrote:

Chickadee, it's not working for me :-).  I suppose my brain just had to go though some of these thoughts and get them out.  It would have been better to be thinking all that twisted stuff in perhaps a dream while I sleep... oh wait, I don't sleep well with this chemically induced menopause.  Anyway, today was better.  None of these stories my head was making up truly make any real sense other then just being some form of logic.  When I say logic, I'm not saying true, just saying that each step in my treatment lead to another step and there were always other options.  I picked my treatment based on micromets in 2 nodes that were positive.  After surgery, my BS came in and told me the SN was negative and I was way happy.  When the final path came back everything changed.  I know that is how it is with lots of us.  We expect one thing and get another.  Like I mentioned, my head was trying to make sense of it now that it's a year later.  You are right with the "this too shall pass" comment.  My father used to tell me that often.  Boy do I miss him these days :-(. 

Poppy, my BS was actually a person I knew from a previous social group.  I really did trust him and felt he was looking out for my best interest.  He really did a good job, but when I went from great surgery with SN negative to a 2nd surgery for some complications and then a final path with positive nodes the whole situation took a turn.  I did have choices every step of the way.  I guess I just thought it was going to be quick and easy and not what it became.  The MO came into the picture when I had the positive nodes.  I even got a 2nd opinion on both the MO treatment plan and my final pathology.  Maybe I had too my say in my treatment and that is why I was blaming myself for awhile.

So far I don't see any permanent physical damage (other then chemically induced menopause), but emotionally I'm toast.   I have some good days, but it's been 6 months since I've really been what I could call happy.  A lot of this is the aftermath feelings and the fact that my sleep is messed up and I can't correct it.  I've tried a lot of sleep aids and even became physically dependent for awhile.  Fortunately, I was able to see what the drugs were doing and went off them almost entirely.  I had a few weeks of awful withdrawals from the anxiety meds, but now I'm back to more of a as needed basis and I am very careful.  I suppose not having good sleep and the fact that I had to deal with the anxiety situation made things worse.  Who knows... maybe that is way my thoughts went off the deep end for a bit.  You are so right in that it only takes 1 cell to escape.  I will keep that in my mind often and remind myself that the treatment fried that cell.  Maybe if I can convince myself that the chemo saved me rather than messed me up, I can start to look at the better side of life.

It stinks to go though all this to stay alive and then not be enjoying life.

Just when I'm about to make ends meet, someone moves the ends.
Dx 6/13/2011, IDC, 1cm, Stage II, Grade 1, 2/6 nodes, ER+/PR+, HER2-
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Jun 15, 2012 09:18 AM Elizabeth1889 wrote:

Rockym, You and I share a very similar diagnosis. Like you, my SN biopsy appeared negative until further testing revealed it was positive for BC. I am a natural born worrier/analyzer and I, too, questioned my decisions along the way. I think this is a normal stage of grief. It relates to Elizabeth Kubler-Ross' bargaining stage. Please give yourself time to adjust to the new normal. Grief and loss proceed at their own pace. I have days when I still wrestle with the dreaded "what ifs," but now, over a year later, I do have days of the acceptance phase. Just last weekend, I attended a cancer survivor luncheon and I looked around at the faces of new friends I had made thanks to BC and the bonding experiences we all had had. It was one of the first times since my BC diagnosis, that I realized my new life was truly good.

Dx 1/31/2011, IDC, 1cm, Stage IIa, Grade 1, 1/9 nodes, ER+/PR+, HER2-
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Jun 15, 2012 09:42 AM Rockym wrote:

Elizabeth, thanks for the post.  Did you end up doing chemo too?  I had a very "delicate" emotional chemical balance before cancer and now that these treatments are finished, I am way off emotionally.  I found a doctor to talk about meds, but she was all about "what do I want to take."  The ups and downs of this are hitting hard some days.  This morning I went to look at the date of my final pathology just to let my head know that the slides were prepared on the surgery date and the results were 3 days later.  Somehow seeing the dates on the paper helped with my "what ifs."  What is hurting is that even though I understand the grief and loss situation, I have a tendency to obsess about things when they are out of my control.

My husband was pretty good during my treatment time when I was in a good mental state, but now he tells me to go talk to my friends, get a job, find a life.  I know he can't be my "girlfriend" but he isn't supportive of the mental health situation.  He wants me to find a new shrink who I can trust.  I have days when I can barely get to the store to fill our fridge let alone choose a new doctor.  Okay... now I'm rambling.  Here's to hoping that life gets better soon.

Just when I'm about to make ends meet, someone moves the ends.
Dx 6/13/2011, IDC, 1cm, Stage II, Grade 1, 2/6 nodes, ER+/PR+, HER2-
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Jun 15, 2012 10:21 PM Elizabeth1889 wrote:

Rockym, Yes, I had chemo, also. For some odd reason, I found chemo easier than rads. And like you, I felt fine mentally during my treatments. It was after the active treatments were over that I had too much time to think about the "what ifs" and the "should haves." Of course, starting on arimidex did not help my mental situation. I tried talking to a therapist, but it did not work well for me. Perhaps, I will try another one. For now, I have been taking celexa. It helps somewhat, but I think my body is becoming too accustomed to it. I find that I want to talk about BC more than most people want to hear about it now. I think the obsessing that we do and the constant need to relive the situation are signs of PTSD. My RO recommended that I join a cancer support group and joining did make things better. I have met other women like me and we all get to talk about our BC experiences.

Dx 1/31/2011, IDC, 1cm, Stage IIa, Grade 1, 1/9 nodes, ER+/PR+, HER2-
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Jun 16, 2012 09:07 AM Rockym wrote:

Elizabeth, chemo was much easier than rads for me too.  For whatever reason, I had little fatigue and my emotional strength was greater then it had been in years.  Rads was wearing on me.  Driving everyday for a 10 minute appointment and then the fatigue that set in was tremendous.  I've never had that feeling before.  The fatigue eventually turned into some form of depression to the point where I could hardly get out of bed.  I had to push myself to do everything.  That is where the guilt gets tied into my children.  I don't feel much joy now and I think that is very rough on my children.  I'm not real good at pretending either.  Talking to my therapist helps a little, but I also think it's because it's an appointment I have to be at.  If I am constantly distracted from my thoughts that also helps.  Of course I don't have enough people to keep that distraction going.

I'ts frustrating to have gone though all of this treatment, etc. and then wake up in the morning with such dark thoughts.  We've spent all this time working to live and now my mind doesn't want to.  I hate the way I look.  I used to feel young and attractive before this crap.  I didn't mind my periods which are now gone.  I was going though a slow peri-menopause and was fine with the fact that menopause would soon come... just not this way :-(.

I look at tampons and pads in the store and I'm pissed off.  Sounds funny, but it's true.  I don't feel like it's only me in any way, but it hurts so much.  Anyway, I think I'll take a walk now and try to get my head in a better place.

Just when I'm about to make ends meet, someone moves the ends.
Dx 6/13/2011, IDC, 1cm, Stage II, Grade 1, 2/6 nodes, ER+/PR+, HER2-
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Jun 16, 2012 12:56 PM Whatashocker3 wrote:

I can understand your mixed feelings towards chemo. My MO and BS both said that had I the one less node I wouldn't have done chemo. So somedays I wonder if it was worth it. I think in the future I will probably confident that it was. However today as I sit bald and browless, I wonder. I did it bcause I want to live and this may help me. Being grade 1 the tamox is a better treatment option from what I understand as opposed to chemo. If I hadn't of done chemo I would have been worried too. Damned if you do and damned if you don't. I really think chemo drugs play with your head and the sooner you can "detox" the better. I was a pretty confident person prior but that's hard to be now without hair and brows. Its growing, just not quick enough.

Dx 10/5/2011, IDC, 2cm, Grade 1, 4/7 nodes, ER+, HER2-
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Jun 16, 2012 02:28 PM Rockym wrote:

Whatashocker, what your MO and BS said would have really ticked me off.  Our dx are kinda similar, but at 46 at the time everything pointed toward chemo as "insurance" as others have put it.  I think you are right in that the chemo messes with your head.  I think everything to do with cancer messes with our heads.  It's been a year since my dx and I envisioned things to be so different.  It is very difficult to go from being a strong and confident women to someone different.

I try to look in the mirror and smile and every so often I even recognize myself.  I used to have long beautiful hair, nice breasts and a pretty happy household.  Now I have 3" of wavy hair that just isn't me (you'd think I'd be happy now that some hair is around), my breast on my cancer side is now larger and our family life isn't going well.  My husband doesn't get it or if he does, he still wants to run and hide.  Our communication together is now worse then it's ever been.  Okay, I can see this post is going downhill, so I'm signing off for now :-).  Sorry ladies :-(.

Just when I'm about to make ends meet, someone moves the ends.
Dx 6/13/2011, IDC, 1cm, Stage II, Grade 1, 2/6 nodes, ER+/PR+, HER2-

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