Blessed, but Threatened

24

Comments

  • cmb
    cmb Member Posts: 1,001 Member

    And while you're stocking up, add Imodium to your list. I never had constipation after any treatment, but I was plagued with severe diarrhea after surgery and during chemo. The nurse had to give me special instructions on increasing the normal amounts of Imodium when I was having what I called my "purge" days.

    We all react differently to treatment and some of us have constipation while others get diarrhea. You're not going to know which camp you fall into until you get chemo. So be prepared for both in advance. And perhaps you'll be lucky enough to have neither.

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member

    Welcome, Nettie. I’m also glad you found us, but so sorry that you needed to! Your attitude is the right one! Each of my sessions I arrived and announced, “Let’s kill some cancer cells today!” As awful as it is, it IS what will save you!

    There are lots of old threads related to icing and how to get through chemo. Very informative! I bought multiple gel insert mittens and booties on Amazon and took them with me in a little ice chest. My fantastic chemo nurse helped me switch them out about every 30 minutes. I know they helped me because I have a tiny, tiny bit of neuropathy in my toes occasionally and my hands are fine. One of my favorite things was the 12X24” electric heating pad that covered my entire torso! It really helps to keep your core warm if other parts of you are freezing!

    I did a ridiculous (because it’s so much trouble!) and torturous (because it made me quite nauseous for periods of time) cold-capping routine, but saved at least 60 % of my hair. It works differently for everyone, so some people have more success than I did. I had 2 goals: not be bald & get MY hair back when it was over. And it was about the ONLY thing I had even a modicum of control over! Regardless, I’m very glad I did it and 10mths post-chemo my hair is a crazy mess (old & new lengths!) but it’s MY hair, not a forever chemo-damaged version. Asked if I would do it again? Yes, but I would be very unhappy about it!

    I will be thinking of you and offering prayers for you. It’s hard, but you can do it!

    😎, Alicia

  • nettiej526
    nettiej526 Member Posts: 28 Member

    Thank you so much Alicia!! You all give me excellent questions to ask at my pre-chemo appt and I truly appreciate it. I am expecting it to be hard and I know that I can do it in terms of my ambition and my flat out stubbornness! It would be truly hurtful to me to have this be the only thing in my life that I had ever given up on!! This heating pad thing might be really helpful to me, because I grew up mostly in Calif and cold is not something that I have a personal preference to tolerate!! Too bad there are no personal preferences involved here huh? lol Thank you and I wish you all the best going forward!!

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member

    You’re welcome! Yeah…not much personal preference allowed! One of the most valuable tools I had was the personal cell number of my fabulous chemo nurse. I used it very sparingly, but it was a huge comfort to us that she was available 24/7. You know how it goes…..nothing bad ever happens early on a Tuesday afternoon! It’s always 8pm on a Saturday! So, see if you can get a number!

    More than a few people in the last year and a half has remarked upon my toughness! I could care less what other people do, but I’m a control freak as to myself! I feel sure your ambition & stubbornness will hold up for you, too! It sounds kind of trite, but control the things you can! And if you’re like me, I never felt like I was fighting for my life (although I certainly was!), but on a day to day basis I was fighting like a dog to get the regular ME back!

    Keep us posted. We are all cheering for you!

    ❤️, A

  • nettiej526
    nettiej526 Member Posts: 28 Member
  • Dak82
    Dak82 Member Posts: 109 Member

    I second getting a port now. I did not get one for chemo and the veins in my arms are so small now it’s impossible to get blood drawn. I have a port now due to ongoing treatment but they require a nurse to access even for blood draws. So yes, ask your oncologist to schedule you for a port. Some will not immediately offer it.

    Best wishes,

    The other Deb

  • nettiej526
    nettiej526 Member Posts: 28 Member

    Thanks Deb! I will be getting my port on Feb 21. My placement will be between my first and second sessions. Not sure why it isn't before the first session. Do you all think it is ok to wait until after the first session to get it?

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member

    Yes, a port is a must, especially if you’re “a hard stick” as I am. I hate the ugly thing, but I just try to perceive it as one of the many things you have to do to survive the nightmare!

    My chemo was right in the middle of the darn pandemic, so my husband wasn’t allowed to do anything but drop me off. Like Denise, I wouldn’t have wanted to do that to him anyway! My eyes are very sensitive to bright light, so I’ve always had a collection of those eye covers. Being in that sun-flooded room, watching the drugs drip, sleepy from the antihistamine, and desperately wishing to not be a part of any of it, I put my little blinder on, had my collection of favorite CD’s with player & earbuds, and slept 95% of the day! I had to set my alarm on my phone for every thirty minutes to change out those darn cold-caps. Psychologically, denial is not normally a healthy emotion, but for me in this situation it was my conscious decision about how to cope! Not wanting to disturb the entire room, I put it on vibrate and laid it on my chest. I KNOW I was quite a sight….all that and the booties, mittens, heating pad and a blanket I brought from home, but who cares, right? 😃 They have blankets, but I wanted my own big plush thing! If my chemo nurse needed my attention, she’d just nudge me gently! I had a little collapsible cart with a telescoping handle (Office Max?). I loaded it with my little ice chest and two tote bags with all my stuff! Every infusion day it looked like I was moving in! A girl’s gotta do what a girls gotta do!

    Do what makes you as comfortable as possible! You will have lots of support!

    😘, Alicia

  • Ribbons
    Ribbons Member Posts: 154 Member

    It’s ok to wait, did they give you a reason? Maybe they are just being super cautious because on rare occasions there are people who are allergic to the chemo 🤷‍♀️ So maybe they are waiting on the port to see how your first session goes.

  • nettiej526
    nettiej526 Member Posts: 28 Member

    I actually had the same thought. If both of us think it, it may very well be so. I also wondered if it was maybe just a scheduling problem for the hospital.

  • Ribbons
    Ribbons Member Posts: 154 Member

    That could be true also. At any rate the procedure was not too stressful. I wasn’t knocked out for it, just numbed up. I think they gave me a small dose of something calming. They use an ultrasound guidance system. Once it’s in place it isn’t too intrusive and I was really happy to have it for treatments. Some people keep theirs in long after treatment but I had mine taken out right away!

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member

    My sister-in-law gifted me one of those really cozy plush couch blankets, not too big, but big enough to cuddle up in and that came with me at every infusion. I still travel with it when I go to my oncologist's appointments, I use it in the car if needed. Very much like a little kid's lovey.

  • nettiej526
    nettiej526 Member Posts: 28 Member

    That is awesome Alicia!! I got a box a couple days ago from one of my nieces. She made me a blanket and put butterflies on it (my house is full of butterflies all my life). It was so touching and I will be wrapped in love!. She also sent me a beautiful beanie(complete with butterfly), some hilarious reading material, a large ice pack and some aromatherapy scent to help nausea. One thing that I won't be lacking is lots of people who love me!!

  • Lyn70
    Lyn70 Member Posts: 214 Member

    Welcome, Nettie

    I empathize with your experience of celebrating an initial diagnosis but then a sucker punch of a treatment plan. I was told 1A endometrial adenocarcinoma based on frozen section section which tuned into 3A after pathology. 6 rounds chemo/6.5 week external radiation and 3 brachy internal radiation.

    However, what can you do but move forward?

    I drove myself to every treatment but the last week of external radiation when a friend insisted she take me. I am no Wonder Woman either, not particularly athletic or fit, 71 years old. I just didn't feel that bad and the times I did, I rested and recovered. I took the meds that helped with nausea, Lorazepam. Bone pain from Neulastla was a less expensive allergy pill than Claritin but same active ingredient. I tried the icing thing but it drove me crazy. I don't like cold and my treatment was during the colder months, too. I have a port and was Thankful for it every treatment and blood draw!

    The people at the infusion/radiation centers became my friends and supporters. They are wonderful people. I always found fellow patients to talk to.

    Just as here, you are welcomed and a Sister.

    ((Hugs))

  • nettiej526
    nettiej526 Member Posts: 28 Member

    Thank you so much Lyn! You sound like me with the cold! Lol I guess we shall see. I like to think that I am a pretty tough gal. I use to play tackle football with the boys out on the golf course after all. LOL You all have made me feel so welcomed and I can't tell you how much comfort that I already get from all of you! And yes Lyn, Always Forward!

  • Ribbons
    Ribbons Member Posts: 154 Member

    I don’t like cold either!! When I was in chemo treatment I did have ice paks for my hands and feet but I also could get HEATED blankets from the nurses whenever I wanted! I never went all out with the icing, just those little ice paks, and the nurses would bring them to me wrapped up in little towels.

  • nettiej526
    nettiej526 Member Posts: 28 Member

    So, did any of you still end up with neuropathy after doing the ice??

  • Ribbons
    Ribbons Member Posts: 154 Member
    edited January 2022 #40

    I only have very slight numbness in two toes, I don’t even notice it really. I have Reynauds disorder so my fingers and toes get really cold easily, the nurse said that could possibly be a benefit! Lol

  • LisaPizza
    LisaPizza Member Posts: 358 Member

    I tried to think if chemo as you are - as a friend, as a privilege to at least be able to fight it. My sister used to call them "Victory Infusions," which made me laugh, but she said, "Well, that's what they are, right?" :)

    I also found the solitude during chemo nice, but I'm introverted anyway. It would ultimately be more stressful to think I had to keep someone entertained. But having someone there the first time is definitely nice!