Newly Diagnosed And Frankly, It's Scary

Discussion in 'Health & Wellness' started by Beth Gallagher, Jan 30, 2021.

  1. Frank Sanoica

    Frank Sanoica Supreme Member
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    @Beth Gallagher

    Your experience above distresses me as well as you. I see "stuff" on the floor most every time I go to dialysis. The start-up as well as finish of each session involves injecting 4 syringes of liquid which come pre-filled and sealed in vacuum wrap, which the technician tears away, most of them then SQUIRT a small stream up in the air from each syringe before administering it! The stuff of course lands on the floor. Sometimes the tech simply goes ahead without expelling possible air......I've seen an occasional "gap" of air in the syringe's fluid, and in that goes along with the intended stuff. I've asked about "air embolism". They assured me the amount was too small to matter. At some point during the past year of this, I have stopped agonizing over the "what ifs"; it's just too mind numbing.

    Another infrequent "floor leak" consists of blood. Some of the connections in the upper arm tend to bleed a long time after disconnecting. Each patient is given a gauze pad to hold over the incision until it stops bleeding. Many are on blood thinners.......including myself, but fortunately my "tubes" protrude through a chest incision, and are capped off, when not in use.

    I believe more errors happen than we know, and feel you would do well to inquire further.

    Frank
     
    #196
  2. Beth Gallagher

    Beth Gallagher Supreme Member
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    Hi there, bud. I think about you every time I go for chemo, and many times in between. I was having a very emotional conversation a few nights ago with one of my best friends, who has advancing Parkinson's. We were talking about how terribly emotionally isolating it is to have a serious illness and how the mind goes to dark places at the drop of a hat. I imagine you understand that. I hope you are doing OK my friend.

    As for medical mistakes, you are right. We must be our own best advocates because medical personnel are just PEOPLE, after all. I remember meeting my medical "team" for cancer treatment (medical oncologist, surgical oncologist, radiation oncologist) and being slightly disappointed because they are supposedly the cream of the crop... and they seemed so ordinary to me. I know they have advanced education and experience, but they are as capable of making a mistake as anyone. So we must pay attention to things that seem questionable... and QUESTION them.
     
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  3. Hedi Mitchell

    Hedi Mitchell Supreme Member
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    So sorry Beth. Losing the hair is really hard for women. Hang in there .. we all are root'en fer ya :)
     
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  4. Hedi Mitchell

    Hedi Mitchell Supreme Member
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    So glad to hear from you Frank. hope all is t least a bit better for you.
     
    #199
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  5. Beth Gallagher

    Beth Gallagher Supreme Member
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    Yeah, so much of our identity is our familiar bits... including our hair. Another fun side effect of Taxol is that the fingernails and toenails sometimes turn purple/black and release from the nail bed. So after treatments, we are often bald with no nails and missing boobs. Such a lot to look forward to with this crap. :D
     
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  6. Terry Coywin

    Terry Coywin Veteran Member
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    Make sure you report that puddle, Beth.

    Yes, I feel ok other than anxiety. My appointment is on Mon. Mar. 8th at 2:30pm. The oncologist will be there to read it right away.

    Getting your hair cut is an excellent idea as it makes it easier on your scalp as it falls out. My daughter in law wouldn't hear of it and she just suffered more pain.

    I am sure you got all the Taxol.

    I'll be glad to get going with this as this hurry up and wait is stressing me out.
     
    #201
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  7. Beth Gallagher

    Beth Gallagher Supreme Member
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    Hey TC. I notified my MO about the puddle, making it clear that I just wanted it documented and consider it a closed issue. I agree that getting a short haircut will be more sensible as I find piles of hair on everything. When I take the Scrunchi out of my grannie bun, it's covered in hair, and I have to clean a handful out of my hairbrush daily.

    I so feel for you on the anxiety thing. I'd like to recommend that you ask the doctor for some anxiety meds as a short-term solution. My PCP ordered clonazePAM 0.5 mg for me back in December when I was having my ongoing hysteria. Those little pills are a miracle, and I'd only take them when I felt myself sinking. I seldom took more than one a day, and not every day... so I knew I wouldn't develop any addiction. (Rx is 2 per day as needed.) I think sometimes we just need a little something to calm down; the stress can be more harmful. You are in my thoughts.
     
    #202
  8. Hedi Mitchell

    Hedi Mitchell Supreme Member
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    :(
     
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  9. Terry Coywin

    Terry Coywin Veteran Member
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    Thanks, Beth. I can have Xanax if I want it, but it makes me sleepy. I am dopey enough, believe me.
     
    #204
  10. Beth Gallagher

    Beth Gallagher Supreme Member
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    NOTHING "dopey" about you, girl!!

    I don't know anything about any of the medications, but the Clonazepam smooths out the edges for me in less than 30 minutes. It does not make me drowsy but it is calming. Having never been a person who takes meds, I didn't know what to expect but it was miraculous for my anxiety.

    Funny but since my formal diagnosis and treatment beginning, I have calmed down for the most part. Still have my "moments," like when I called my hairdresser and to tell her I have cancer and need my hair cut... I just lost it. She's been doing my hair for 30 years. I'm just ready to get through this horror-show year and see what happens next!
     
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  11. Terry Coywin

    Terry Coywin Veteran Member
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    I will take a Xanax before my pet scan as it is long and confining and I am a restless type. At least it isn't an MRI which I loathe. I nearly have heart failure when I require one of those. Some nurse I am. lol. If I need radiation I will also take the Xanax.
     
    #206
  12. Lulu Moppet

    Lulu Moppet Veteran Member
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    Pet scans are nothing to worry about Terry. Only the results are. Hopefully yours will be fine. The test is quick.

    Beth you are going through such an effin' nightmare, which has nothing to do with a good result of a long, healthy life.

    So glad we have these groups to come to for solace & reassurance.

    Catch ya later.
     
    #207
  13. Terry Coywin

    Terry Coywin Veteran Member
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    Thanks, Lulu. I am not worried about the scan, lord knows, I've already had several. I am concerned about the outcome as you have noted. But, we don't even know how long I've had these nodes and it's only the one they are looking at. It's too small for a biopsy, thus, the pet scan.

    Beth has a long row to hoe and I agree these groups are great to support our friends on here who sorely need it.

    Later.
     
    #208
  14. Hedi Mitchell

    Hedi Mitchell Supreme Member
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    @Terry Coywin
    Almost 30 years ago had scan done on my neck . Several nodules.Not sure why but I never pursued the matter any further. He had said they might be cancerous. Um ok...
    But I also found more people have nodules of some sort than not an at least at that time rarley cancerous.
    :)Best Wishes
     
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  15. Ruby Begonia

    Ruby Begonia Supreme Member
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    Beth, I pray for your strength through this.
     
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