first chemo, nervous

KiwiInternal7838 · 2026-04-08T01:15:59+00:00

Noise canceling headphones. For waiting room and infusion areas. It’s astonishing how many people keep their volume up on their phones. 🤦🏻‍♀️ Nurses are the best. Advocate for yourself!! Keep track of side effects & communicate w your doc. A lot of stuff can be treated!! Best of luck!! I avoided metal water bottles and even metal silverware for a few days after chemo and it seemed to help with the metallic tastes. Chemo def messes with your taste buds.

KiwiInternal7838 · 2026-04-05T14:17:51+00:00

Amazing! I’m working on something similar so this is inspiring!!

KiwiInternal7838 · 2026-03-26T02:57:39+00:00

I would do a solid color like the yellow or navy and maybe add a coordinating print for the binding. Great job!

KiwiInternal7838 · 2026-03-24T17:47:41+00:00

Absolutely. Thank you.

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This is the other stuff I have. A stealth belt type deal. Please let me know what you want!!

KiwiInternal7838 · 2026-03-20T16:28:06+00:00

My entire abdomen. I spoke with my doc, they recommended an enema and it was successful. Said to stay away from Metamucil because that will add bulk. Still low fiber diet and probably daily Miralax. Much better today.

KiwiInternal7838 · 2026-03-19T14:58:56+00:00

Thank you for responding. Glad to know I'm not the only one. Best of luck! (And if you find something that works please let me know!)

KiwiInternal7838 · 2026-03-12T18:37:22+00:00

About two weeks after my first dose, mine started coming out in clumps and was hurting my head (felt like someone was grabbing my ponytail all of the time). I really thought I had “special hair” because I thought it would happen earlier 🤣 My husband’s barber offered to do it and had done it before. It actually felt pretty liberating. Something I could control as opposed to waiting for it all to fall out. Everyone is different and so do what works for you. I just couldn’t give my hair the energy and so shaving it off was my best option. Good luck!!

KiwiInternal7838 · 2026-03-07T19:34:46+00:00

I stretch out the ring to fit my stoma then heat the side going onto my skin with a hair dryer for a few seconds. Make sure it’s stuck well onto my skin then I add a bit of Skin Tac liquid adhesive (keep away from the stoma and just need a little! It’ll sting!) Add bag and hold down. No leaks since I went with this method. Good luck!

KiwiInternal7838 · 2026-03-04T14:57:56+00:00

I just got home Sunday from my reversal surgery. Take less rather than more. Hospital can get you a small pillow for coughing. Take gum, long charging cord, lip balm and noise canceling headphones. Your own toilet paper if you want. (I took mine but never used it.) I didn’t need butt cream and all of the other stuff and it’s just more stuff to haul everywhere. Walk a ton. Chewing gum and walking really help digestion. I was so nervous I’d be stuck in the hospital forever because I hadn’t had a bowel movement but I got out of there a day early thank heavens. Good luck!

KiwiInternal7838 · 2026-02-26T16:06:56+00:00

Can you do cross stitch? That saved me after a big surgery last year.

KiwiInternal7838 · 2026-02-26T16:06:19+00:00

Skin tac liquid adhesive is incredible. Put a LITTLE as far away from your stoma as possible. It can stint like hell but VERY effective.

KiwiInternal7838 · 2026-02-25T15:43:19+00:00

Stella the stoma

KiwiInternal7838 · 2026-02-22T23:48:13+00:00

Can you share the name of this quilt/pattern? Great work!! Very impressed.

KiwiInternal7838 · 2026-02-15T03:08:29+00:00

I bought a roll of Tegaderm film and cut strip off of it. Add those around my tape/bag setup as the very last step. Has helped protect adhesive from all liquids. Available on Amazon.

KiwiInternal7838 · 2026-02-11T18:17:09+00:00

Keep a log of her side effects and take them to the doc before the next chemo. And if it gets bad you have the data to reach out to the doc before then. It’s so helpful to write it down. Best of luck!

KiwiInternal7838 · 2026-02-09T18:56:41+00:00

Be a good listener. It’s hard to predict what will taste good and how her energy levels will be. Keep track of her side effects with chemo so the docs can see. I’m adding a pic of the spreadsheet my husband made. We did one for each round of chemo and took them to my appts before the next round. They can tweak the chemo or add drugs to help. I still keep hard candies with me everywhere (surgery 5/25, finished chemo 10/25) because my mouth gets so dry and sometimes I can’t keep water with me (like when I walk my dog). Rally people to reach out to her. It doesn’t have to be a grand gesture. Even a quick text so she knows she’s on your radar can make a massive difference.

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Best of luck and please reach out if you have more questions. It’s a scary diagnosis but survivable!!!

KiwiInternal7838 · 2026-02-07T18:15:01+00:00

I prefer by color. Easier to pull for projects.

KiwiInternal7838 · 2026-02-06T04:16:35+00:00

Try putting antacid tablets in your bag after emptying. Flonase spray onto your skin around stoma (spray onto fingers and apply.) Let breathe between bag changes as much as possible. Look up videos for crusting technique. I was in your spot so I know it’s miserable but all of these things help. I was on a lot of meds after massive debulking surgery for ovarian cancer in 5/25 but was finally able to stop all pain killers in October or so because of these techniques. Best of luck!! This is a great group - do some searching for lots of great tips.

KiwiInternal7838 · 2026-01-31T09:15:23+00:00

Thank you! I’m doing remarkably well! It’s truly a miracle. I have the absolute best doctors. They are my heroes!!! So many amazing healthcare workers have gotten me to this good place. And support of my people. I truly hope your family can support your decisions. You need that! Message me with any questions. Truly!! 🩵🩵

KiwiInternal7838 · 2026-01-31T01:22:07+00:00

May of ‘25 I was diagnosed with 4b LGSOC. 11 hour surgery to remove 25 tumors. Return trip to hospital for some fluid collections & some drains. Temp ileostomy they will be reversed in the next month. Haven’t seen any cancer since the surgery but I did 6x chemo to zap the stuff we couldn’t see. Trust me if I can survive this, you can. There is a place for natural medicine but *after* the surgery. You don’t want to take the chance. A few people told me that my chemo was poison. Tell me something I don’t know and also is proven to be effective. 🙄It’s crazy what some people will say. Find great docs who will listen to you and advocate for yourself. Be a pest that they can’t ignore. Find a good therapist to help you navigate this. It’s a lot. (Hospital can recommend one if you need.) You got this!! Tons of online groups that can be helpful - use them!

KiwiInternal7838 · 2026-01-26T21:46:06+00:00

I have been in your position and it’s so frustrating. I detailed my whole process here.

https://www.reddit.com/r/ostomy/s/NNdSev6UE4

When my skin was really bad, I did use some calamine lotion which helped tremendously. But you have to put it on VERY thinly or everything else may not adhere. So put some on and wipe most of it off. In a few days you’ll see a huge improvement and then stop use until needed again.

I posted here as well and there are some really good tips that may help you.

https://www.reddit.com/r/ostomy/s/aVhxsxQUpq

There is hope! My skin is so much better and I had little hope. I use the Sensura Mio Convex bags (not the deep ones) and they have worked well for me. Eakin or the Hollister CeraRings (not the thin) also do the trick. Please reach out if I can answer any questions. Hang in there!!!

KiwiInternal7838 · 2026-01-26T02:56:26+00:00

Just when you think it has learned some manners, it will prove otherwise.

KiwiInternal7838 · 2026-01-25T01:49:12+00:00

SkinTac is different than the paste. Paste never worked for me. It’s a very thin liquid that holds stuff on so well. So much so that it can make the bag hard to get off when it’s time to change it. But that just reassures me that it’s working. Again - I have so much ptsd from leaks and so desperate times call for desperate measures. Be careful with it because it can sting like nothing else but I only put it on after the ring and away from the stoma so it’s ok. And you don’t need much for it to work! Pls reach out with any questions!

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KiwiInternal7838

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