worse before it gets better?

Wisteria83

Today is 6 days post treatment.  I feel sure that somewhere on the forum I read that sometimes things get worse before they get better after treatment ends.  At least I don't think I imagined that.

BM's are the worst right now.  Stools are formed and soft, but the pain is beyond anything I felt before.  You know how on the pain chart it's between 1-10 and ten is supposed to be the worst pain you could ever imagine?  Well this is a 9.  A 10 would be this exact same quality of pain except that it would just continue and never end.  I'm still on high doses of pain meds and the rad onc says don't even think of beginning to cut down yet.  However, this has not helped my BM pains.  after calling and speaking to the nurse yesterday, she said she's sorry, it's normal, and it's just something I need to get through, and the doc doesn't want to prescribe anything else in addition to what I'm already taking.  THIS of all things, is what's making me lose control emotionally.  Crying in pain while in the bathroom.  The screaming into a towel like someone else mentioned is happening despite my efforts not to lose it.  I've honestly never felt anything like this before.

I feel like I'm at my absolute lowest point since my diagnosis.  I wish I had lidocaine to numb up my bottom, but since the pain is just inside, there's no way I'm going near there to either apply something or put something inside me.

I'm back down to 86 lbs.  I don't want to eat, but I'm forcing myself to try.  I wish I could just sleep until the healing gets underway.

Anxiety about BM's shouldn't be happening.  What a ridiculous thing to have a panic attack about.  A BM causes me to become undone.  What's going to cause me to go ballistic is if my doc decides not to refill my xanax.  It's my PCP who I have a contract with who prescribes that for me, and she's not exactly generous and she's not happy about me being on them.  On a plus side there, she's at the same practice where my Medical Oncologist is, so maybe if I need to enlist her help in talking to the PCP that would be helpful.  Med Onc told me I should take the xanax everyday at least once, maybe twice if needed, because I saw her at least once a week during treatment and she knows exactly what's happening with me.  PCP may want me to come for an office visit before/if she decides to refill.  I think that's silly, because ALL my medical info is in their computer system and all she would need to do is read a few pages.  Sometimes, I swear their goal is to charge for another office visit.

What's it going to be next?  

 

 

Salsify

It will get better

Hi Wisteria, I am so sorry to hear how badly the pain is for you. Yes it got worse before it got better, but you should be turning that corner very soon. I remember amazing a friend from out of town by taking a bit of a walk the day after the 2nd chemo ended. Told her later that I could not have done it another day later, or for a week or 2 after. 

Are you rinsing down yonder as you eliminate? Cool or luke warm water from the peri bottles helped ease the pain for me. 

And if you are whimpering or screaming as you go... I think that is the norm...

Please know - IT WILL GET BETTER!!!! 

Wishing you speedy recovery-

sally

Tushygirl

I feel your pain.  I think

I feel your pain.  I think the after is harder because you are just waiting for healing while not doing anything to actively help destroy the cancer.   I found that I could hit the spots just inside by using a q-tip And it did help.  I also found Strata XRT really help speed up my healing if you can find it (it is new so hard to find).  

One of my friends sent me a damnit doll that really came in handy when I wanted to beat something up (which was often).  

i found it was important to be knowledgeable about your options and be firm to what YOUR needs are.  It may be normal to them but the side effects are personal to you.  I know what you mean between the doctors.  I want to get them all in one room and agree on everything.  My medical oncologist thinks I have a side effect of an ulcer (do you know this is a known side effect?) while my gastroenterologist doesn't think so.  Me? I am the ball that gets batted back and forth.

Mollymaude

Wis

I was told radiation keeps doing its thing (treating, damaging, burning) for some time after last treatment. So yes it can get worse before it gets better. But you should be right at the turning point. Hang on, it will get better. 

mp327

Wisteria

I know many of us feel your pain, including me.  I honestly didn't think I was going to make it to the end of my treatment, as pain was off the charts.  Keep after your docs to continue your pain and anxiety meds.  Hopefully, you can get your doctors to work together on this and agree that you need these meds in order to tolerate the remainder of your treatment and the short time following, when you will still have pain.  I know it seems impossible to continue on, but you must.  Those last few treatments are of the utmost importance, as they will target only the tumor.  Hang in there--you can do this.

ginatom

Wisteria, I keep thinking of

Wisteria, I keep thinking of you and hoping you are improving.  Jeana

Wisteria83

ginatom said:

Wisteria, I keep thinking of

Wisteria, I keep thinking of you and hoping you are improving.  Jeana

Jeana

Hi Jeana, thank you.  Today is Sunday, 10 days post treatment.  I've been to the toilet 7 times so far today and it's only 5:30.  I have dozed off and on most of the day.  Whoops.   Better make that 8 times.  I sincerely hope that this is one side effect that goes away.  

I think that I've read all your posts and I have to tell you how much I admire your strength.  I don't know if I could have handled another cancer diagnosis like you have with so much grace.  Both you and your husband are going through cancer treatment at the same time.  I can't even imagine the logistics, let alone the emotional impact.

Shortly after my diagnosis I was full of great intentions of blogging or journaling my experiences and feelings as you have done.  I never even started.  Once aboard the treatment train, it seems like my days took on a life of their own.  Every day was the same, only the weather changed.  And once the side effects began...

It's not too late for me to start journaling as you suggested.  In fact, for the past 4 days, I've had a basket of writing materials sitting on my side table waiting for me to actually do something with them.  I'm very much stuck in my head.  

Where do you get your strength?  Many people in this forum have religious faith and that gets them through.  Others are just very optimistic by nature, it seems.  I don't feel strong or optimistic or faithful.  I think I feel more desperate than anything.  I'm trying to be positive by pushing away negative thoughts.  All the "What ifs" feed my fear of the unknown.  My husband, who is the most steady, down to earth person I know, believes that I can draw the bad to myself just by allowing it into my mind.  I don't think that's true...or at least I sure hope it isn't.    

 

I ended up not posting this yesterday.  So, now it's Monday.  I'm physically not up for taking walks yet.  I don't have blocks to walk around because I live in the middle of nowhere, but oddly enough, I live on a busy road full of logging trucks, no shoulders, just ditches on either side of the road, and the speed limit is 55mph. It's not a safe place to walk.  My neighbor has a really long dirt driveway though, so when I'm ready, I can walk on her driveway.  I don't have the energy to do much of anything currently.  Too many hours awake at night.  Either in the tub or on the toilet.

This is where I am today.  I picked back up writing this post this morning at around 7:30 and now it's  11:40.  I'm easily distracted, as you might guess.  Thank you for asking after me, Jeana.  I truly appreciate it.  I will continue to hold you in my thoughts, as much as the oatmeal I have for brains allows me to.  Please continue sharing your thoughts and ideas with all of us here.  I for one, am grateful to learn from you, as I'm sure so many others here are also.  Although I may not be in a place at this moment to take your advice, I'm hopeful that I will be sooner rather than later.  

Hugs,

~Wis

 

 

ginatom

Wisteria, what a good start!

See? You are journaling already!  I love that you shared all that, and I hear the pain and struggle in your "voice".  One thing that helps me when I'm journaling is the idea that nobody else will ever read it.  It's mine alone.  That way I don't have to tidy it up, or worry about HOW I say something, or hurting anyone.  That helps me stay in the emotion and out of my head.  If you feel yourself getting too dark, ask yourself another question . . . like "what could make you smile right now?" or "what would you like to eat when you feel better?"  Then, (the same day, or a week or year later) you can edit it for a bigger audience if you choose.  Sometimes I pretend I'm writing someone I trust to hear me without judging - a girlfriend usually.  Or I even email her and then copy it to my journal to get me started.

Anyway, you will find your way through all this.  I know you will.  Isn't it amazing how much a support group that we never even SEE helps us?

As for how I stay positive - haha - remember I'm not in treatment yet!  I feel decision day approaching, and I'm aware that I'm ALMOST more afraid of the treatment side effects than I am of dying!  But my way of dealing with it is to find out everything, lean into it.  I guess I don't like surprises when it comes to side effects.  It makes me feel more prepared.  More in control - haha - as if we are in control of anything.  But I have meditated for decades, and I've worked to not believe everything I think.  And I know the stories my mind tells me are not truth - they change in nature every second.  So I try to find a story that works for me and tell myself that one!

But remind me of all this in a month, OK?

I hear you that you are not ready for walking yet.  But as soon as you can, SOME sort of movement will help everything.  I'm sure of it.  Even if it's shallow knee bends - standing, bend your knees a little, then straighten.  Or even while sitting on your trusty donut pillow and lifting soup cans with your arms.  It is a way of telling your body that you need it to make more energy now, and it will respond.  I can tell you more details about the lifting if you want.  Just let me know.

I think you are going to turn a corner one of these days, and when you do the intense pain and desperation will leave your mind.  Keep us posted, as you're going to do it in your own time.  By the way, having dark thoughts does not draw things to you.  I don't know how all that got started.  I never feared having cancer in my entire life, even after having it!  And I've had it three times now!  And the things I HAVE feared have not appeared.  So my approach is: wallow a little bit, write about it or share it here, and then stop and put that behind you for awhile.  Ignoring bad thoughts is dangerous.  But we do have SOME control of our minds, and it's important not to just STAY there in the darkness.  There's a lot to love even when we are suffering.  OK, now I'm sounding preachy.  Didn't mean to do that.

I hope today improves for you!

Big hug back, Jeana