Super frustrated! Am I the only one?

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KarenMG
KarenMG Member Posts: 109

Hi all. I find myself to be super frustrated and anxious lately. One reason I know why is because yet again my treatment plan is undecided which is at least half my fault. I was unable to go for my last CT on the 11th due to uncontrolled diarrhea (ugh) so now everything is thrown off. Can't get another one scheduled until the 23rd unless my nurse navigator is able to change it. My appt to see the radiologist was on the 19th and he would need the results, plus a doctor visit on the 23rd. Not going to work out if the CT is not done!

So I restarted taking Ativan after years of not taking it, now for nausea and for all around generally miserable feelings related to GI issues and anxiety. Since my Doctor told me that things were not looking good if I do not take chemo or some other type treatment for my liver, my anxiety is pretty much out the roof! Last night I started shaking and could not stop until meds kicked in and I went to sleep which took hours.

It seems folks on this board are calm, cool and collected to me but that might be because they are just not about hysterical like me. I do realize that sometimes Ativan and other meds tend to have the opposite effect at times, I feel like I have a hangover today.

I've just got a lot of decisions to make, whether to go ahead with the chemo and the radioembolization, if that is even an option after scan results. My CEA keeps going up. I need to get a will made, I'm waiting on a call back from an attorney on that. Plus I have to go make my funeral arrangements. It's going to be really hard considering that I'm so anxious about it all. It is all overwhelming! I think I'm exhausted, couldn't get to sleep until 6 am this morning, even with the Ativan.

I don't see these kinds of posts here...am I on the wrong discussion board?

Sorry for the high anxiety here, I think a nap is in order, might help me calm down a little. Thanks for listening.

Karen

 

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Comments

  • Mikenh
    Mikenh Member Posts: 777
    edited January 2018 #2
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    The frustration and anxiety

    The frustration and anxiety are here. You can see it in posts but you have to look a bit closely as a lot of the people here are articulate and have the ability to be quite objective which means suppressing emotions and feelings. Maybe you can see it in my posts, maybe not. I could certainly see it in Jim's posts under the covers but some of the real difficulties have to be fished out. I've used words like brutal, awful, etc. to describe adjuvant chemo. I've felt anxious, despondant, etc. about the past five days. But I think that most of us like to try to keep things together.

    A friend on another board died recently - a well-known, helpful, fighter. She had conquered cancer after having it for a long time and was only 41. She dies a few weeks after liver surgery, of all things, a blood clot. So that's been a real downer this weekend.

    I'm in the office right now where it's 58 degrees and I have gloves on to deal with the tingling. I have a lot of things to get done this weekend and the nausea and tiredness are just starting to abate but my feelings are that this is no way to live. People I talk to think that I should be doing great because the cancer is gone and it's odd that I have to explain that the pain is worst trying to prevent its recurrence. I know that others are having a tough time too - they might not use the adjectives that make it sound rough but I can feel the undertone of the writing.

    I know the frustration of the scheduling of services. I made mistakes in scheduling as well but I didn't know how the systems worked and it cost me some time.

    I have thought about dying and we talked about wills, with some good comments by Jim, recently. I'm stage 3b and I should be in good shape but I'm in more pain right now than ever before and trying to hold it together while working and doing the other stuff that comes with responsibilities. I think that forums are a good place to vent and it's something that we need to do from time to time. But we're all trying to be helpful too and sometimes we're away from ourselves to be as helpful as we can and that may seem clinical.

  • airborne72
    airborne72 Member Posts: 300 Member
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    Miserable in Tennessee

    Karen:

    We are in different places with cancer, but still we are both affected by it and its treatment.  I have been up, down and all around emotionally because of the diagnosis, the prognosis, the treatment and the effects from the treatment.  Insomnia being one of those effects.

    Never in my life have I had any difficulty falling asleep, sleeping restfully and then waking up with energy.  That changed as soon as I was diagnosed and through out my period of prognosis (mental stress).  After my resection surgery, learning to live with an ileostomy and adjuvant chemo (physical stress), my sleep pattern has been altered drastically.  I can't sleep longer than 3 hours because of my ileostomy.  Doesn't matter when I last eat or what I eat, I must arise twice each night to go to the bathroom.  Going back to sleep is problematic.  Last night for example, I laid down at 10 p.m. and slept well until 12 midnight until I had to empty my bag.  Then I could not fall back to sleep until 3 a.m.  I slept well until 6:30 when the sun came up, and so did I.  I am not getting quality rest.

    My diet is limited by my appetite and this ileostomy.  Consequently my energy level is suppressed and my weight is about 15 pound below normal.  I freeze all day and all night.  I don't have much natural insulation left on my bones.

    Sprinkle in some bonified depression on top of it all and that's my current situation.

    I guess what I have done is try to remain somewhat positive through all of this, reminding myself continuously that there is always someone in a worse situation, and that I don't want to add to anyone else's burden with my travails.  But yes, this cancer has rocked me hard.  It has been the greatest physical, mental, and emotional challenge of my life - to date.

    Your concerns are valid.  Your physical response is normal.  Your inquiry is appropriate.

    There are so many of us with similar issues.  We just deal with them in differing ways.  No judgement, just compassion and empathy.  Cancer sucks.

    Jim

  • plsletitrain
    plsletitrain Member Posts: 252 Member
    edited January 2018 #4
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    Trust me, you're not the only one

    I swear if I was very open enough, my posts will be filled with expletives to describe how this has affected me.  But part of the reason why I usually don't shout to the world how I feel is because I don't want to discourage those who were newly diagnosed or are still undergoing treatment.  But believe me, I would just usually cry silently or scream silently.  Just yesterday while I was taking a shower the devil kicked in and whispered about death.  I was too weak to continue and I just sat there pondering on how is my life gonna be in the coming months or years.  There's a suspicious lung nodule found on my recent scan, the good news is it is shrinking.  The bad news is I have to get back to chemo and pay for it in cold cash.  And I'm not even considering surgery. My kids are still toddlers so thinking about making a will for them is really devastating to me.  

    I don't want to look or appear weak.  I know that no matter how our loved ones tell us how they understand our situation, I think all of us here who have the cancer really are the ones who understand how we feel.  And its alright to vent your frustrations here.  we totally understand it.  We get it, you don't have to feel sorry.  If taking the meds help you, then I say go with it.  Our situation is not easy, hell it is HELL and we need major help to sustain our sanity, whether it be meds or emotional support from peers and family.  Its not easy dealing with the physical toll as it is, and the mental and emotional stress just worsens it.  I sometimes wish I was just dreaming and this isn't happening. 

    We feel your pain. 

     

  • Katijane1
    Katijane1 Member Posts: 8
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    Hi Karen,

    Hi Karen,

    You’re certainly NOT alone. I’m lucky that I don’t experience the pain that comes with going through treatments, but I certainly have anxiety and trouble sleeping EVERY night out of worry and concern over my dad’s condition: did I do enough? Should we have opted for this treatment vs that? Should we have gotten another oncologist? Should we have opted for eastern, alternate treatment instead? What is my brother and I gonna do with my dad’s business? Etc, etc, etc....  

    I hope things are calmer for you tomorrow. 

    -Jane

  • KarenMG
    KarenMG Member Posts: 109
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    Thanks Jim and Mike

    Yes, this road is awfully difficult and so often others don't seem to have a clue. Like you said Mike, if your cancer is gone people think you should feel good. Ha! I actually have just not felt well since the whole thing began, just have had a deep down sick feeling in my gut that has never left. Now I'm starting to feel weak.

    I guess I am not good at articulating how I feel without coming straight out with my concerns and fears. I'm sorry, I didn't mean to unload or burden anyone here more than necessary.

    Don't know what I was hoping to get from this, I guess just spewing out the frustrations that I highly feel.

    Take care all,

    Karen

  • BRHMichigan
    BRHMichigan Member Posts: 368
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    We are all suffering

    Karen, I don't want to see anyone suffer, but I completely appreciate your post. We have all been through so much, and the ed great unknown ahead of us can paralyze even the strongest. 

    I was diagnosed last May and my insomnia has been terrible ever since. Lately I take THC oil, edible Cannabis, and 10 mg of Norco. It's an opiate, but it helps. My Oncologist says I need sleep to heal, so he has no problem prescribing it. Melatonin also helps sometimes. Keep trying different things. Lack of rest can make you feel crazy. I hope you are able to find some relief. 

  • Woodytele
    Woodytele Member Posts: 163
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    Weed

    if you can get your hands on some cannabis, specifically indica which encourages sleep do it.  It’s been a blessing to me.  I couldn’t sleep after surgery and all this chemo until I got the weed. 

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    Guided imagery save my bacon

    When I was doing the chemo, my head would spin so bad I honestly thought it was going to explode. So many sleepless nights, you really do feel like you're going crazy. 

    I don't remember how I came across it, but I found this CD by Bellaruth Naparstek called 'A Guided Meditation to Help with Chemotherapy'. OH MY GOODNESS, IT SAVED MY LIFE! No really, it was miraculous. 

    I'm a very active (hyper) person, and would never have dreamed that I could meditate, but I found I could, and very easily. I think out of desperation maybe. Anyway, it worked wonders for me. 

    I know it is not everyones cup of tea, but thought I would throw it out there. 

    We all have to find our way, and if we don't, we're in serious trouble. 

    Good luck!

    Tru

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    edited January 2018 #10
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    Always a struggle

    I'm always in a struggle with worry.  It seems I've always got one test or appointment looming on the horizon and I'm always nervous and afraid.  Last year two biopsies unrelated to colorectal cancer, a biopsy that turned into 11 doctors appointments later, one test after another.  So it might seem like we are here just going on with our life, but a lot of us have the anxiety and worry as well.  Some people the worry just rolls off their shoulders - not with me.  It shows on my face and mood.  I'm a worrier by nature.  I've been cancer free for 9 years and I'm still anxious.  Let your doctor know your concerns and ask if there is something you can take for the bathroom issues so you can get your CT scan done.  I'm also not sleeping well.  Mine is because I'm going to the bathroom all night long.  After reversal of the ileostomy, my bowels are so loose I'm going at least 8-15 or more times a day.  Haven't slept well in 9 years and it does wear you down.  Wishing you well and come here often to vent your concerns.  We are always here to help you.

    Kim

  • Mikenh
    Mikenh Member Posts: 777
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    KarenMG said:

    Thanks Jim and Mike

    Yes, this road is awfully difficult and so often others don't seem to have a clue. Like you said Mike, if your cancer is gone people think you should feel good. Ha! I actually have just not felt well since the whole thing began, just have had a deep down sick feeling in my gut that has never left. Now I'm starting to feel weak.

    I guess I am not good at articulating how I feel without coming straight out with my concerns and fears. I'm sorry, I didn't mean to unload or burden anyone here more than necessary.

    Don't know what I was hoping to get from this, I guess just spewing out the frustrations that I highly feel.

    Take care all,

    Karen

    Karen,

    Karen,

    If you need to vent, yell or scream, or complain, please feel free to do so. That's part of a support group too. I'm sure that we all feel like doing it and I do do it from time to time myself. We have a punching bag in the office classroom. Sometimes I go down there to vent.

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
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    You're not alone. When I'm

    You're not alone. When I'm down I just don't come on here. I take sleeping pills to sleep, anti-depressants to keep from having negative thoughts, and I'm hurting, fatigued and miserable to some extent most days. From having an ostomy and having issues with what I eat due to adhesions that have surrounded my organs, to a huge ball of a scar from having a drainage tube after my surgery that hurts when I sit because it's near my tailbone and having the drainage of mucous from my rectum because the colon still produces it but it hurts like I'm constipated and I have to wear a pad every day, to just wanting to eat some popcorn or raw veggies or anything I can't have now, a good day for me is still a bad day.

    So yeah, I totally get the fear and frustration and anxiety. And we all have it. Maybe not all the time but nobody gets through this without it. I see my oncologist in two days for the first time since I had to stop chemo in September and she'll probably want me back on it. So back to more fatigue and the ugly rash that makes me embarassed to go out in public. But at least it works. This time I'll probably be on antibiotics the whole time because last time I ended up in septic shock while on it due to my colon getting irritated and allowing bacteria into my bloodstream. So I'll be really scared of that happening again.

    Just know you're not alone. I hope that helps.

    Hugs,

    Jan 

  • OzarkGal
    OzarkGal Member Posts: 41
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    I can relate

    I can relate to your situation.  I too have liver mets.  In the month after I was diagnosed, I did the estate planning, etc.  Because I was doing that, my friends asked me if I was giving up.  I told them 'no'.  It gives me some comfort to know that it has been taken care of.  When my friends and co-workers were taking their summer vacations, I was meeting with a funeral director.  I cried through most of it but it was very helpful to talk to him.  If and when, I don't want to be one of those where hospice is never called and I die in an ICU.  Nor do I want to be undergoing treatments that are not working and provide no benefit.  My onocologist is a very kind and compassionate doctor but I am not sure that he will be able to say when to stop treatment.  So I, like many with this disease, deal with alot of unknowns which fuels an emotional rollercoaster. I have moments when I just cry. 

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
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    OzarkGal said:

    I can relate

    I can relate to your situation.  I too have liver mets.  In the month after I was diagnosed, I did the estate planning, etc.  Because I was doing that, my friends asked me if I was giving up.  I told them 'no'.  It gives me some comfort to know that it has been taken care of.  When my friends and co-workers were taking their summer vacations, I was meeting with a funeral director.  I cried through most of it but it was very helpful to talk to him.  If and when, I don't want to be one of those where hospice is never called and I die in an ICU.  Nor do I want to be undergoing treatments that are not working and provide no benefit.  My onocologist is a very kind and compassionate doctor but I am not sure that he will be able to say when to stop treatment.  So I, like many with this disease, deal with alot of unknowns which fuels an emotional rollercoaster. I have moments when I just cry. 

    My oncologist suggested last

    My oncologist suggested last summer that I sort those things out. She said not because she thinks I'm going to be gone anytime soon but because when you're dealing with a chronic condition you have enough to worry about without something like that as well. She said it could just be a good thing to get behind me. So good for you!

    Jan 

  • LIEBERT
    LIEBERT Member Posts: 6
    edited January 2018 #15
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    Have you had colon surgery

    Have you had colon surgery yet? Prior to chemo/radiology? I had a 4 hr. colonostomy surgery last March, now 12 chemos, 28 radiology treatments, have felt fine all the way since the surgery. Waiting for the reverse ostomey.

     

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
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    Anyone whose read my posts

    Anyone whose read my posts for a while, knows I should be paid for promoting Xanax. It really cut the moments of climbing anxiety, helped with sleep, and let me focus. Didn't take it every day, thoujgh that's what the label says, because I knew playing around with it[child of the 70's, my excuse], that it's power diminished with regular use. The wife had Ativan, but I thought it less potent, even with greater dose. It mostly helped her, but at the hardest moments she had my pill. It's likely different for each individual, but when I was emotional beyond doing exercise or work, it was nice to have a go to, and though I'm a bootstraps guy, I have no aversion to taking a thing I know helps. I'd probably pitch meditation or mindfulness to you, if I was better trained with those techniques. In any case, rest assured most of us know, and have felt the levels of fear and anxiety you bear, we just have time to collect ourselves and project the calmer, stronger people we want to be, mostly[though if you look back, I've got posts that are pure anguish]. I once said the nice thing about talking through a keyboard is that you can cry and still keep typing. Hang in there.........................................................Dave

  • Joan M
    Joan M Member Posts: 409 Member
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    You're not alone!

    As you can see many of those on this board have anxiety and there have been several posts expressing both anxiety and depression, fear, anger, etc, just not always in the post subject title. 

    I was on anxiety meds before I got cancer and of course, have taken them since.  You don't have to do everything right away or even by yourself.  Worst case scenario if you don't write a will, is that your husband and kids inherit what you own.  If no kids, it goes to parents and then to siblings, or neices and nephews, then cousins or other kin.  If you don't plan your own funeral, those who care about you will do so with the help of a pastor or funeral director or both.  I understand you want to do those things yourself, talking to a lawyer is a good start.  taking anxiety meds can help reduce anxiety but also can reduce your effectiveness. 

    Hang in there, life goes on with or without cancer.  My sister died unexpectedly, and had no chance to do any of those things for herself.  It was all taken care of by her husband and children.

    Good Luck in acheiving your goals and with your treatment!

    Joan 

     

  • PamRav
    PamRav Member Posts: 348 Member
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    Not an easy road

    for any of us.   I’m with everyone else here that’s posted comments, I have had my really bad days (even still).  the only people who can really understand are the people who have been through ( and are going through) this disease.   I found that Ativan , Xanax , meditaction, mindfulness, cancer support groups, walks in the fresh air outside all have helped.  I do my best to keep positive. 

    Wishing you all the best

    pam

  • KarenMG
    KarenMG Member Posts: 109
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    LIEBERT said:

    Have you had colon surgery

    Have you had colon surgery yet? Prior to chemo/radiology? I had a 4 hr. colonostomy surgery last March, now 12 chemos, 28 radiology treatments, have felt fine all the way since the surgery. Waiting for the reverse ostomey.

     

    Hi Liebert

    Yes, I had a colon resection November 2016. No colostomy was needed which made me happy at the time. I've had radiation a few months after and then chemo. It seems like that should have been enough right? If you have felt fine since the surgery then you have been truly blessed in my opinion! I've had problems since with ongoing constipation and diarrhea, cannot seem to hit a happy balance with diet and meds. I now take a lot of immodium some days.

    I'm assuming you also had some chemo, if not lucky you again! Thanks for asking...

    Karen

  • KarenMG
    KarenMG Member Posts: 109
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    Thanks all!

    Thanks so much to all for your replies! I really appreciate hearing your personal stories and struggles. After reading a few of them, I started feeling quite guilty. You all have been through phenomenal amounts of pain and misery for sure. We are all in this together.

    Love to all and please take good care of yourselves Embarassed

    Karen

  • nkeelty
    nkeelty Member Posts: 18 Member
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    Reading all these posts made me feel like I am not alone. Being brave so my family doesn't worry is all I do now. I cry at night or in the shower. I am so tired and knowing I am not the only one is a great relief!