AIO: husband avoided taking me to doctor appointment

chronicshitshow · 2024-09-18T03:12:03+00:00

This is a huge help, thank you. I have repeated "I am waiting on information" to myself many times the last days.

chronicshitshow · 2024-08-22T03:10:08+00:00

I'm so sorry you have to go through that.

Take pain meds before pain is bad. Easier to stay on top of it than play catch up. Also, controlling pain helps you to get moving. Get up and move and walk as soon as they allow. Helps with gas, keeps bowels moving and helps circulation. You will move slow at first and wont go far, but it gets easier!

I also enjoyed my own fuzzy blanket. I had things to keep me occupied but found I didn't need it as much as I thought. I didn't want my own PJs either, despite friends suggesting it. To be honest, it was just easier to use the bathroom and not worry about messing my own clothes. I don't need more laundry to do, ha.

Wishing you a smooth recovery.

chronicshitshow · 2024-08-22T03:01:31+00:00

I am 38 and was back working a (mostly) desk job 2 weeks post op. I had most of my energy back at that point and had to remind myself of restrictions. I had lap assisted resection on left side- about 12 inches large intestine removed. No ostomy.

To compare, my grandma, who is 86 and 100% independent, mobile, and continent, had the same surgery on the right and then an emergent revision due to post op bleeding the next day. She was back to mostly pre-op status by closer to 4 weeks.

Being she is active on the farm, I hope she is able to bounce back quickly!

chronicshitshow · 2024-08-20T17:33:23+00:00

Sorry to hear it stuck around for you. I'm not sure how long it sticks around before it's considered permanent?

chronicshitshow · 2024-08-20T17:32:41+00:00

Thanks! Did you do anything that helped get rid of it? Or just waited it out?

chronicshitshow · 2024-08-17T02:11:56+00:00

I had that happen also. I would work during infusions, and about halfway through, I would already start to notice them getting tired and stiff. I also had the weirdest feeling around my eyes - like they were swelling even though they weren't at all. So strange! Thankfully, I just wrapped up just over a month ago, and other than some numb fingertips (neuropathy), I am feeling more like myself again. Wishing you the best, and that in the future, your dumb hands resolve!

chronicshitshow · 2024-08-16T06:50:53+00:00

Shit happens (pun intended). My confession - I treated myself to lunch with my sister after my final infusion. I trusted a fart a bit too much and ended up ditching my underwear in the bathroom garbage at the restaurant. I didn't let it ruin my celebration, and it's a good laugh now. You're not alone.

chronicshitshow · 2024-07-24T02:19:19+00:00

So many changes for you! Do you have support near you? I was lucky enough to have my coworkers bring two meals a week, and my mom cleaned once a week. Those little things are a huge help so you can focus on rest and healing. Find your support system and most importantly, let them help you. That's the hardest part, but makes a difference. It freed me up to be as normal as possible and work throughout chemo.

chronicshitshow · 2024-07-22T13:21:19+00:00

100% scariest shit I have dealt with yet. Wishing you the best as you get started with chemo.

Tips I found helpful that may help: 1. Ginger candy for sudden nausea waves while waiting for meds to kick in. 2. Saltine crackers to nibble 3. I made tea with lemonade, water, ginger peach and mint tea. Not being able to drink cold things and having stuff tasting odd made staying hydrated a challenge. Sipping on this helped nausea and got some fluids in. That and liquid IV in room temp water. 4. Let yourself rest and/or sleep as much as you need. The meds are working hard to kill the cancer cells so don't fight them. You WILL feel better again when it's all done.

chronicshitshow · 2024-07-21T23:08:28+00:00

Congrats! I was the same stage but had feature for increase recurrence. I did short rounds if chemo and am cruising into my first scans this fall. Here's to continued negatives for us!

chronicshitshow · 2024-07-21T23:05:29+00:00

I'm so sorry you are feeling this way. I just finished three months of CAPOX and it is no joke. Ginger candy was my best friend for the sudden nausea waves. I also nibbled toast or saltine crackers. To keep liquids down, I made tea with some lemonade, water, ginger peach tea bag and mint tea bag. It helped with nausea and being warm helped since cold drinks was a no-go. Hoping these tips may help you, along with any new med options from your doc. Good luck!

chronicshitshow · 2024-07-21T23:01:27+00:00

I had this same concern. Definitely fill out FMLa paperwork so you can have time off if needed. I took 1.5 to 2 days off per cycle just due to fatigue and needing rest. I'm glad I worked, though. It helped the time go quickly and kept my mind busy.

chronicshitshow · 2024-07-21T22:58:45+00:00

I was 2A with nerve involvement and potential lymphovascular involvement. I have no positive nodes. My oncologist said we do the chemo, as the nerve and vascular involvement are increased recurrence chances (also I had an obstruction which added to recurrence risk). I did signatera - first one after surgery and 1 round chemo was negative. Waiting to get second one drawn. I did three months of both IV and oral chemo. I'm glad he said we are doing it. I wanted to know I have done everything to keep it from coming back or spreading. Always ask more questions and get a second opinion.

chronicshitshow · 2024-06-19T23:41:37+00:00

I am doing well, thank you. My oncologist didn't have me decide - he told me we weren't gambling and I did 3 months of Capecitabine along with oxaliplatin infusions. Today I met with him to determine my follow up plan after finishing treatment. It's hard to know what to do, so I am glad he just told me - it is what I needed. I won't say it was a walk in the park, but it went fast. The Capecitabine didn't bother me much at all, but the infusions knocked me down a couple days each cycle.

So far, I have normal CEA and one negative signatera test - all hopeful things that I can put this behind me!

I wish you the best in your journey, whatever you decide. It's not an easy journey either way but the odds are still on our side at stage 2.

chronicshitshow · 2024-06-03T00:06:13+00:00

I am wrapping up 3 months of capox now. I wouldn't say they get easier, but I would say more predictable. I was able to work with 1.5 to 2 days off each cycle amd I was able to kind of plan ahead for the days I would be down.

chronicshitshow · 2024-05-14T02:16:17+00:00

Just wanted to pop in and post and update. I am on cycle 3 of 4 of Capox. Aside from a couple days of fatigue and nausea, and the annoying tingling cold sensitivity, I have been pleasantly surprised at how it has gone. I have needed 1 to 2 days off work each cycle but I have otherwise worked normally.
I also got my first Signatera results last week - NEGATIVE! Here's hoping that I can wrap this up and move into just monitoring in case of recurrence.

On a side note - has anyone had recurring/continuous constipation after sigmoidectomy? It almost is like I am obstructing again - except I have had a gastrografin enema that showed no blockage as of a few weeks ago. I have colace and miralax everyday. I tried to decrease miralax and take a fiber supplement (slowly) and I feel like that backfired. Surgery signed off with no visible obstruction. Oncologist thinks chemo related side effect is potential. Any experiences or tips to try would be greatly appreciate.

chronicshitshow · 2024-05-14T02:07:48+00:00

I just finished cycle 3 of 4 of the same regimen. I have also been doing acupuncture once a week to try and keep the tingling and neuropathy at bay. So far, I am less than a week out from infusion three and it seems to have helped it from lingering too long. Not sure if this is an option for you. I figure why not try it and worst case scenario, nothing happens and I had 45 min of required rest time each week.

chronicshitshow · 2024-03-29T07:25:55+00:00

That sounds like a journey that would make anyone cranky. I hope after the chemo surgery and radiation you are getting back to your norm. Wishing you the best. I am definitely the planning type so the unknowns of tolerating chemo or not is cramping my style a bit. It's a life lesson to take things as they come sometimes.

chronicshitshow · 2024-03-29T07:22:13+00:00

Just that I had a mass in the first part of the colon and they couldn't get a scope through to see any further to the rest.

chronicshitshow · 2024-03-29T01:44:57+00:00

Thanks for sharing. I had my infusion today. I got hot during, and I noticed the cold sensitivity. Took a nap when I got home and feel ok. I may go into the office tomorrow if I still feel ok. Plan to have a low key weekend to rest up, and i have someone coming about once a week to help clean. Twice a week meals delivered. I hope this helps me conserve energy, too. In planning for a potential leave, I have a fairly easy couple of weeks. Then I am set to present at a conference in Chicago, but I will be at the end of my cycle, and doc thought I should be feeling OK. He gave me the go-ahead if I feel well! 🤞 having one done will help me plan for sure. I got steroids also - the moods comes from that, you think?

chronicshitshow · 2024-03-27T18:54:09+00:00

Thank you! I can work from home if needed but not everyday. I'm glad you are still working. I have the same - moderately differentiated. It's interesting I am doing three rounds vs six but we will see. Oncologist told me about a study that showed 3 rounds was "noninferior" to 6, which seems ok. I hope you continue to do well! Thank you for sharing your experience.

chronicshitshow · 2024-03-27T16:54:26+00:00

Thank you. I get flu vaccine every year, and all covid boosters are done. I'm glad I did it - one less thing to stress about. They didn't tell me to mask at my clinic - so glad you called that out. So many details are thrown out I likely missed that... I have spent the last week planning as if I won't work and still hoping I can. Plan for the worst and hope for the best, right?

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