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Terrified continued

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  • mac5
    mac5 Member Posts: 85
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    JackBear I LOVE your comment.

    It is YOUR list. What YOU need should be the most important right now. You may be everyone else’s Caregiver, now is the time for you to care for you.

    Sig, you will get unkind and hurtful comments. Especially from those who know you deal with anxiety issues. It’s just a part of them feeling better about themselves I think. But your Nurse Advocate needs to know you are having difficulties. I think Anxiety and Depression are sisters when you are diagnosed.

    Not to be “sweetness and light” about it, but hasn’t somebody said, “Your record for Surviving the worst time of your Life is 100% so far.” You don’t have to be Brave...just show up

  • Slg1324
    Slg1324 Member Posts: 106
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    hi Giddy,

    Thank you for sharing what you’ve been going through with the anxiety and how you’ve had breathing issues and panic attacks. I’m so glad an osteopath has been helping you.did you worry that the shortness of breath had anything to do with cancer?obviously I am very worried about that but trying to calm myself by thinking maybe it’s acid reflux or something not so catastrophic. I have been doing a lot of nervous eating (I’m trying to stick to healthy snacks )mixed with the anxiety maybe that’s aggravating my Esophagus or something.its just the scariest thing when it wakes me up - I can’t breath and can’t really go back to sleep. I’ve had digestive and acid reflux i issues before but never quite like this , but the mind is a very powerful thing.I’m hoping it gets addressed very soon weather that be with something like an osteopath or a medical professional that I need not worry as much that the cancer has spread to my lungs or something.i am also actively trying to get help with the anxiety.

    Sweet, you have a daughter in college too !my daughter and I are still managing to have some fun since my DX and all this started but it’s been rough .

    Thank you for telling me I can do this ! Hugs to you and I hope you are doing well

  • Slg1324
    Slg1324 Member Posts: 106
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    SuQu,

    Don’t worry I won’t be counting on friends anyway because at this time in my life the friends are have have drifted away as happens in life sometimes. Bedsides my husband and kids I’m pretty much a loner .the people at my job have been supportive as far as me needing to take a break and they are good people but we are not close friends .Hopefully since I’m actively looking-I’ll find someone (in person) even professional,support groups and otherwise to help me talk through this.

    I understand how difficult that must have been telling people on Halloween but your husband was right , that they can handle it .

    As always thank you for listening and support:)

  • Slg1324
    Slg1324 Member Posts: 106
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    jack-bear

    I'm definitely keeping in mind that online as doc is an option !i don’t want to have to butI also have a crisis number to call

    ❤️

  • Slg1324
    Slg1324 Member Posts: 106
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    hi Mac , thank you so much for your words and support ❤️

    I have heard that quote “ you don’t have to be brave you just have to show up “ but you are the first one to actually tell me 😊

    I do know that people will be unkind and hurtful about anxiety , it’s upsetting at what a stigma it is . However i understand it’s more about them than me. I have made the nurse navigator, my pcp and social worker very aware of my anxiety - I just haven’t gotten the help yet . Made numerous phone calls about it yesterday in the mist of my overwhelm of the week of DX and showing up for my cancer education yesterday.

    Thank you again for the support!hugs

  • mac5
    mac5 Member Posts: 85
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    Sig1234 I'm so sorry you are made to wait. Hope your Nurse Navigator listens closer.

    Until then vent to me and others. But truthfully I'm just as scared as anyone. Hugs.

    Bever

  • Slg1324
    Slg1324 Member Posts: 106
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    Mac

    I’m so sorry you are scared , feel free to vent too ! That’s certainly what I’m doing. Lots of hugs to you ❤️




  • secondchancetoo
    secondchancetoo Member Posts: 12
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    Sig1234, I can so relate to your struggle, and your issue with people being so not understanding as it relates to anxiety and depression issues. Why do these inane stigmas remain? I actually had a Dr. look at me in a quizzical way and say " why are you so dramatic?" when I was trying to explain my anxiety disorder and how it prevented me from doing things medically that most take for granted. I swear I don't see where this outmoded attitude comes from in this day and age. We don't " shame" people for having hypertension, or thyroid disease, but, yet we shame them for anxiety? The clincher was when this same Dr. said " you really should try to get some help for this condition ". Hmmmmm, I have never thought about that in my 67 years.....said no one ever. My best to you. I am in your corner.

  • jack-bear
    jack-bear Member Posts: 169
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    'This is why' so many patient forms say NO to depression & anxiety. Some of us have lied.
  • Slg1324
    Slg1324 Member Posts: 106
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    hi Second,

    You totally get it ! Has anything helped for you? The sigma is terrible! I don't understand. Sadly i don't think our health system and providers are equipped to deal with it but act like they are .in recent years when I've been to the doctor they now always ask if I've felt down , depressed or hopeless in the past week and I always answer “yes" and not once has anyone asked me anything further about it . I have gotten help in the past but life has way of carrying us up into the fast paced basic survival mode and I have been unable to maintain over the years. Now I'm in extreme urgent mode about getting help since this DX .

    Thanks for talking to me ❤️

  • Slg1324
    Slg1324 Member Posts: 106
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    jack-bear

    I mark “yes” to depression and anxiety on medical forms but It doesn’t seem to make a difference other than with some insurances of had in the past considered it a preexisting condition and that worked against me back thrn

  • GiddyupGirl
    GiddyupGirl Member Posts: 196
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    Sig - I totally get it. I said to a dr. I have severe panic attacks and her response was really but you look fine. I was very fortunate in my surgeon who was awesome with the anxiety and just told me that he would get whatever I needed to get me through and actually told the nurse to back off when she got all lectury it was awesome. This may sound silly but with the digestive issues if you are lying down make sure to lie on your right side with your head propped up and try sucking on mints - my daughter convinced me to do it and surprise it actually helped. Also with the anxiety affecting your breathing all your chest muscles will get tight and you will be sucking in more air which makes your stomach bloat which makes it harder to breath. Try a heating pad on the middle of your back and see if that helps. (I think we all worry that its cancer spreading but I am trying to really look for a horse not a zebra meaning its often a common simple thing rather than the worst scenario). Last piece of advice when you feel really anxious slowly eat about four saltine crackers as bizzare as it may sound a doctor suggested it to me and it actually works - really cuts stomach acid without drugs. Thinking of you and wishing you all the best.

  • minustwo
    minustwo Member Posts: 13,076
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    Sig - sorry to hear your day has not gone well. Some good advice above. Since you & your daughter can still have fun, I liked the one about watching old sit coms. Laughing is always good. How about sleeping in your recliner? That may be even better than lying down on your side. Even if you only doze, it's better than choking. Chances are less than a million to one that the breathing issue is related to cancer - any kind of cancer. Just not likely. And deep inside, you know that from past experience.

    Sounds like the Valium isn't working. How about trying Xanax instead? Or another of the anti-anxiety drugs. From your past history, are there some drugs you know work better for you?

    But I think you should call the nurse navigator back and lay it on the line. She is your gate keeper for now. Or call your PCP if you trust that doc. Tell her you can't sleep, can't function and the mental trauma is as serious as throwing yourself under a bus. I know that's a bit extreme, but perhaps it will get her attention & you need to get your point across. You have to advocate for yourself. Sometimes you need to be blunt & forceful to get them looking at what YOU need (you - the whole person - not you a small cog in their medical whirl with just a very little bit of cancer from their perspective).

    If you're not in a position to advocate for yourself now, it's vital that your husband step in and advocate for you - no matter how busy he is. Or you must pick one person who can speak on your behalf & will be there with you every step of the way - thick or thin, good or bad. You are at the start of an important process and even the most clear headed of us who were diagnosed with cancer didn't hear anything the docs said for awhile, or know WTH they were talking about - or remember much either an hour later.

    Also remember - surgeons cut - that is their job. A very specific job and not whole body care. (although I loved the story above about the surgeon being the one who understood the anxiety & shut up the nurse) I think it's always worth talking to a medical oncologist before making a treatment decision - something imperative if you test HER2+. Even if you don't need chemo, an MO is the one with time to listen to all the problems, consider ALL the options and put together a total plan of action - coordinating all the other docs.

    I hope you don't think I'm scolding. I'm surely not doing that. Just trying to toss out something to hold on to while all the options start bombarding you. We'll all be thinking of you and sending positive energy.

  • jack-bear
    jack-bear Member Posts: 169
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    Sig, I started answering Yes when I couldn't hide it anymore & was too tired of trying to be what I thought was expected of me. I also found my TBI was making my communication increasingly difficult. I have longevity in my genes. They also kept their brains. I anticipated living a long life with clear thoughts. It is embarassing to be disabled because I can't remember instructions. That's the short version. But I guess what I am trying to say is that my lack of higher brain functioning is more embarrassing to 'fess up to' than my high strung features. I have become humble? Humiliated? I need the help more than my pride??
  • WorryThePooh
    WorryThePooh Member Posts: 378
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    Slg1324, I think from what you have said, the size and grade of your tumour is similar to what mine was. I was told it was very small, and following pathology it turned out it hadn't spread to any nodes. Very unlikely for you to have mets I believe.
    I also have suffered from debilitating anxiety, so I do understand much of what you are going through, including the breathing problems. On top of the actual anxiety, I found out I had a large hiatus hernia six years ago, and they put me on nexium, but prior to that I would get terrible chest pain from the hernia, and I would then go into a panic attack thinking I was having a heart attack. Fortunately the indigestion for me is now very rare, only when I have over indulged in rich food!

  • Slg1324
    Slg1324 Member Posts: 106
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    hi Giddy

    Thank you for the great advice , talking to me and thinking of me ❤️While I don’t know if these breathing/chest problems are digestive and anxiety or not - like you say I should try mints , eating slower and try not going to worst case scenario 🥴I hope that wherever you are that you are doing alright . Hugs

  • Slg1324
    Slg1324 Member Posts: 106
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    hi Minus ,

    Thank you for your sending positive energy, sending it back your way too ❤️I can feel it from everyone and I'm so grateful.

    I don't think you are scold, I am here asking for advice and guidance.

    So far today is going better than yesterday and I'm glad - I know this is a big roller coaster ride . I'm still in shock I know and unfortunately I freeze when in shock . I know what your saying about being a self advocate for getting the help I need and getting someone to help advocate for me . I know my husband is doing everything he can . I'm trying to think of other people that could possibly help.i've made it all very known that I need help(with mental health) to the nUrse navigator(NN) and PCP and yes I should push more ! So frustrating. The social worker in the NN office that I spoke to about my anxiety and depression was very sweet but her face expressions seemed to me like she was almost scared by me telling her that I urgently needed help with my anxiety and depression. I wasn't yelling or anything but my facial expressions were probably that of fear . She said she would talk to my oncologist about getting me on meds Anyway she gave me a list of numbers to call and I called about 5 numbers and left messages on Friday afternoon and of course haven't heard back.its so hard to talk face to face to people (esp. strangers ) about any of this stuff .😔

    About medications - when in my 20s I took Prozac for a year or so and it worked well at the time for awhile but I didn't want to stay on it - didn't like the side effects. Then I'm my 30s I was on Paxil for a few years -it was okay but again the side affects were not good . A couple of weeks ago I tried Zoloft- awful ; totally amped up the anxiety so I stopped. I'll have to see what the oncologist says . Maybe he will have me try Xanax , like you had mentioned.

    The HERS2 result is supposed to come in at anytime now and most likely before I meetwith the surgeon on Wednesday and yes that's before I meet with the oncologist(whole body)that won't be until nov. 13 😔

    Hope you are enjoying your Sunday

  • Slg1324
    Slg1324 Member Posts: 106
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    hi Jack-Bear

    I’m sorry to hear about your TBI (if you want to share more about that you can but you don’t have to ) and I certainly understand about pride getting in the way of stating that there’s a personal mental health struggle on a medical form or sharing anything like that with your doctor or anyone for that matter . I really feel for you that you do struggle with it as well!Both the medical world and Society have some major improving to doon dealing with anxiety and depression

  • Slg1324
    Slg1324 Member Posts: 106
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    hi Worrythepoo

    Thank you for sharing your experience with anxiety and breathing issues ( I’m very happy to hear you are not really having the indigestion much anymore) and having confidence that it’s not my worst fear . Means soooo much

  • secondchancetoo
    secondchancetoo Member Posts: 12
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    Sig 1234, to answer your question rather I have found anything to help honestly, I have tried most all modalities over the years to address my anxiety issues. From medication, to CBT, hypnosis, ACT....you name it, I have tried it! What I have is very persistent and resistant to everything, so, I have learned to accept what I have, make reasonable accommodations for it, and love myself anyway. For me it's been the way to a peaceful existence. Do folks that don't have this anxiety understand? Nope, but I have accepted that as well.

  • Slg1324
    Slg1324 Member Posts: 106
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    hi second,

    Thank you for answering 😊would you say acceptance has helped ?im happy to hear you’ve learned to love youre

  • WorryThePooh
    WorryThePooh Member Posts: 378
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    Sig1324 you're very welcome.


    secondchancetoo... I love what you've said here "What I have is very persistent and resistant to everything, so, I have learned to accept what I have, make reasonable accommodations for it, and love myself anyway. For me it's been the way to a peaceful existence." :)

  • rlmessy
    rlmessy Member Posts: 97
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    I tried to type this earlier this morning on my cell phone and it deleted - I hope I can remember what I said...

    The mental health aspect of all of this has, since my Mom was diagnosed in 2006 and now me in 2019, amazed me. For us it was like getting hit by a truck and we were expected to get right back up and move on. It does not work that way for her and I. We go down hard and can work our way back up because we are resilient but that initial punch knocked both of us for a loop. A cancer diagnoses for a lot of us is a diagnose not of a deadly disease that will kill us but a chronic disease that we will need to manage for the rest of our lives. We will never be able to just go back to "before cancer.' We are forever changed.

    That makes our mental health a top priority in my humble opinion because how I think about all of this will determine how I live through all of this. Personally, I manage my General Anxiety Disorder pretty well. I have not medicated in the last five years but have instead been able to develop coping strategies. I still carry "rescue Xanax" to this day.

    When I had my first appt with the "cancer team" they gave me this full page survey about my mental health. My hubby chuckled when I listed yes to about every question. "Are you depressed - yes" "Are you having trouble sleeping - yes" "Are you anxious - yes" and so on. He whispered in my ear at one point "What do they expect you to do, dance a jig?" I colored in the temperature gauge of my stress level at 10 of 10.

    I turned the form in with all my other forms and not one person out of 3 doctors, 2 nurses, 2 ancillary people said anything about the form. The next day I got a call from a social worker on a Friday afternoon, she left a message that she was "checking on me." I called back got her voice mail, left a message and it is Sunday night and that form is the joke of my family.

    Thankfully, I work with a great group of mental health professionals that are keeping a good eye on me. I am thinking of going on some daily anti-anxiety meds when I settle on which team I want to work with. I have a second opinion scheduled for the 29th and am on their cancellation list. Right now I am relying on my xanax for the bad moments but thankfully they have not been daily.

    My thought is do whatever you need to do to get through the "active part of treatment" when it settles down to a manageable level work on strategies that might help in different ways.

    Slg - our stories are reading very much alike - you (and I by default of reading all these amazing responses) have gotten some great advice. We are going to be ok. I am trying to take it just one day at a time, sometimes one minute at a time. We will get through it.

    Lots of love, prayers of peace and respect for how all of us are writing this chapter in our life story.

  • Slg1324
    Slg1324 Member Posts: 106
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    rim,

    Sorry what you first wrote got deleted this morning. I hate when that happens.

    Before all this hadn't been on any meds either for years and managed the anxiety and depression with some success with exercise including yoga. Still struggling quite a bit but it did and does help . Although right now it's very hard to get motivated,especially since I'm so damn tired. I'm still managing to get some exercise in though

    I’m going to be learning more about Xanax. I didn’t know you could take it as an emergency thing I thought you had to take it regularly.i wonder if it would be better than the Valium which works some of the time

    . I hope you are doing okay and lots of love , peace and hugs to you . !❤️

  • Slg1324
    Slg1324 Member Posts: 106
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    someone actually called me on a Sunday . I have an appointment with a counselor(hope she’s a good match) on Wednesday after my appointment with the surgeon (so scared for that )

  • minustwo
    minustwo Member Posts: 13,076
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    Hot Dog Sig - great that you have an appointment with a counselor. Start making lists of all the thing you want to know or discuss.

    I have what I call 'emergency' Xanax -but a very low dose. It was prescribed during my cancer diagnosis & treatment. There was NO WAY I could have gone into an MRI tube w/o it. And NO WAY I could have laid completely still w/o even blinking an eyelash for 40 minutes before the PET/CT while the contrast was seeping through my veins. It definitely chills me out.

  • Slg1324
    Slg1324 Member Posts: 106
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    thank you Minus ! All this info is very good to know!

  • jack-bear
    jack-bear Member Posts: 169
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    Sig, I have a couple of ideas that at the least, you can laugh about. For anxiety: Rescue Remedy. 4 drops. 2nd: Jaeger. DH says it is used in Germany to settle your stomach. One shot. We keep a bottle in the freezer. I was very desperate & let him pour me one once. I was extremely doubtful. It worked. You should run that by your doctors first. My best idea is adoption. Cat or dog from a rescue group. If you're not big on cats or dogs, get a little to gallon aquarium and a fish just one fish.
  • jack-bear
    jack-bear Member Posts: 169
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    Sig, I have a couple of ideas that at the least, you can laugh about. For anxiety: Rescue Remedy. 4 drops. 2nd: Jaeger. DH says it is used in Germany to settle your stomach. One shot. We keep a bottle in the freezer. I was very desperate & let him pour me one once. I was extremely doubtful. It worked. You should run that by your doctors first. My best idea is adoption. Cat or dog from a rescue group. If you're not big on cats or dogs, get a little two gallon aquarium and a fish just one fish will do. 🐟
  • jack-bear
    jack-bear Member Posts: 169
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    Sig, I have a couple of ideas that at the least, you can laugh about. For anxiety: Rescue Remedy. 4 drops. 2nd: Jaeger. DH says it is used in Germany to settle your stomach. One shot. We keep a bottle in the freezer. I was very desperate & let him pour me one once. I was extremely doubtful. It worked. You should run that by your doctors first. My best idea is adoption. Cat or dog from a rescue group. If you're not big on cats or dogs, get a little two gallon aquarium and a fish just one fish will do. 🐟