Waiting for Savasana

Tamoxifen Blues

3 Comments

I am back to feeling pretty crummy most of the time.  I had stopped Tamoxifen before my last surgery and felt better almost immediately.  I started it back again at the end of May.  And now it is August and I have taken that white pill every night for two and a half months and I am back to feeling awful.

The first week I was ok.  Then things started to hurt.  Then I started gradually to wheeze again.  And then there was a bit of malaise which turned into fatigue which turned into exhaustion.

I feel not great all the time.  I feel like you feel when you are about to get the flu.  Kind of achey and run down.  Only the flu never comes and I just keep feeling lousy.

I am also wheezing again.  I have difficulty doing anything remotely strenuous.  It’s a challenge to just get off the couch without being short of breath.

I am also quite un-Tiggery most days.  I’m just back to being an Eeyore.

And I am supposed to do this for ten years.

I don’t think I’m going to be able to do that.

And I know there are people who will say that having a recurrence is much worse than Tamoxifen side effects and I agree.  To a point.

There are plenty of people who take Tamoxifen for the prescribed years who still end up with a recurrence.  It’s not like Tamoxifen is the magic answer.  All Tamoxifen does is lower my chances from like a 20% chance of a recurrence to a 15% chance.

It doesn’t work for a lot of people.

So I’m taking this drug that increases my chances of endometrial and ovarian cancer, it increases my risk of blood clots and it makes me feel like a mildly stinky pile of poo most of the time just to cut down my very likely chance of recurrence by a mere 5-8% points.

I don’t know if it’s worth it.

What would you do?  Would you spend whatever time you have left taking a drug that *might* prolong your life and/or might give you cancer in other places and at the same time has some really gnarly side effects like the ones mentioned above?

Or would you rather spend your respite feeling good?  Feeling human.

Because guess what they give you if your breast cancer recurs?

Anti-hormonals like…you guessed it Tamoxifen.

Right now.  I have no energy.  I have shortness of breath and I ache everywhere.  I don’t feel like I am really living any kind of life.

And I keep going back to the fact that all that time when I had cancer and didn’t know it?  I was running marathons and half marathons, I was working a job that required a lot of energy and I was actively raising my boys.  I felt great.

I felt great while I had cancer.  And now I am doomed to ten years of feeling like I have the flu?  What’s the freaking point?

If they were able to say to me, “If you take this drug for the prescribed time, your cancer will not come back. 100%”  I would be more apt to keep taking it.  But nobody can tell me that.  Nobody.

It’s all, well MAYBE it will work…it works for some people.

And I keep taking it because I am scared.  Because I am hoping that it will do it’s job and keep the cancer away.

But what is the point of being here if I am just a lump on the couch?

I am tired of feeling badly.  I am tired of this.  I did what I was told.  Surgery, chemo, radiation and anti-hormonals.  I have not felt good in a year and a half.  I am tired of being a patient.  I am tired of feeling horrible.  I would like to be able to breathe again.

But I don’t want to die.  And I really don’t want to die the horrible death that is death by breast cancer.

Although, I probably will anyway regardless of what I do.

And I can talk myself into circles of this for days.  And I keep taking the meds.  Even though they make me feel absolutely miserable.

The fear doesn’t end.

I don’t know what I’m going to do.

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3 thoughts on “Tamoxifen Blues

  1. I am sorry you feel bad. I wish you could just feel good all the time because you deserve to.

    My mother’s best friend was prescribed the tamoxifen and discontinued it’s use after about six months-ish. She just could not deal with it. Four years later it came back and she died six months after that. Could she still be living if she’d kept taking it, my mom thinks so and is kinda mad at her for not taking it BUT she told my mom she’d have rather been dead than take that crap another day and had no regrets. None.

    My old neighbor’s daughter was diagnosed with stage 4 and they really didn’t expect her to live at all, but she survived chemo, they patted her on the back, told her to take the tamoxifen and now tell her they never expected to see her again. That was 20 years ago this June. She just wanted to see her last kid get to kindergarten and she watched him graduate high school in May. She took that mess every day.

    You have been through a lot. I am praying you feel better soon and somehow that junk quits screwing with you.

  2. Beth, I am so sorry to hear you are experiencing these awful side effects. I am going to see if I can find any advice on how to manage them from my community. Stay strong! Marie

  3. I wish it wasn’t so tough!

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