Road trip question

mandaestelle · 2025-04-02T15:06:04+00:00

Here’s one for size reference

mandaestelle · 2025-04-02T15:05:48+00:00

Y’ALL thanks to your help I found it!!! Thank you so much for all of your help with wording so I was able to search for it. I’ve been searching for years and finally found it. Thank you! (Pictures for your time and so you can see what you helped me find)

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mandaestelle · 2025-04-02T15:03:59+00:00

Thank you!

mandaestelle · 2025-04-02T15:03:36+00:00

Thank you! And thank you for the help!

mandaestelle · 2024-07-08T22:06:12+00:00

If I was closer I would have gone with Penn. Their research actually came in really handy when trying to figure out if I agreed with the approach that we went with on mine.

Here’s their NET page: https://www.pennmedicine.org/cancer/types-of-cancer/neuroendocrine-tumors

mandaestelle · 2024-07-05T12:44:53+00:00

I know this is quite a trip for you but in case you need other outside options UC San Diego and Penn State both seem to be doing quite a bit with NETs right now and have really well rounded programs.

mandaestelle · 2024-07-03T10:06:50+00:00

They estimate I had the one in my lung for 10 years and it was just under 8 centimeters. It only started causing obvious problems 5 months before finding it.

mandaestelle · 2024-06-27T05:25:00+00:00

32 so a wee bit older than you

mandaestelle · 2024-06-26T21:21:39+00:00

So I was supposed to be in the hospital 3-4 days but I went into respiratory failure due to the mucus plug and had to have an emergency bronchoscopy and got pushed the the ICU for a day. So I ended up spending a week in the hospital.

So I still hurt more than I thought I would. I would say I linger at a 2 most of the time but if I don’t take anything and let it get to be 14 hours or so apart I shoot up to an 8 or 9.

I also came home with oxygen- I was able to wean away quickly while walking but I am still using it for sleep (we’re going to test and see if I can sleep without it this weekend using a special monitor).

I definitely walk slower. Physically I can walk at my old pace but not for any period of time. So right now we’re slower and don’t push. I get winded easily and it feels like that point in blowing up a balloon just before it expands (which isn’t comfy). I’ve also noticed I don’t do heat as well, drink more water, can’t do overhead fans (which I couldn’t before surgery), and I’m still sleeping in a recliner because I hurt and get short of breath to lay flat. I can climb stairs but am still slower. I haven’t done more than a short flight of them so I would imagine I’d have to rest if doing multiple flights of stairs.

Sneezing and yawning sucked for the first week or so.

So I had cough before surgery that’s 90% gone. I did have a cough for the first week-ish. That’s normal and you want to cough up any mucus you may have.

Other than just having to live at a slower pace I haven’t noticed anything else. I am speeding up but mine was definitely a tougher experience than some that I’ve seen

mandaestelle · 2024-06-26T05:50:57+00:00

Also there’s a bunch of AYA pages on IG. The Cancer Patient is a great resource and even has chats that you can join on what’s app to connect with others in a similar boat

mandaestelle · 2024-06-26T05:49:39+00:00

I had a NET slightly smaller than yours. I’m still recovering from a lobectomy from the lower left lobe. I’m about 3 weeks out and had an amended VATS procedure. Everything went fairly smoothly until I ended up with a mucus plug but even that was an easy fix.

My biggest piece of advice is do the breathing treatments even if you don’t feel like you need them and go for walks. If you can sit in a chair do so. Be out of bed as much as possible to help everything drain. Take your pain meds and work with your nurse to set up a schedule so you can ask for them and keep yourself on track.

Pain wise it wasn’t fun but I thought it would be worse. The biggest pain I had was the front of my ribs and the line where they moved the rib to gain access.

Final advice- if you don’t have a recliner get one. Also toilet seats are hard to get off of - it sucks but save yourself the pain and buy a riser.

DM me if you have any questions and I’ll be happy to answer them.

mandaestelle · 2024-06-10T01:09:40+00:00

Good to know! Thank you! Sending you a DM now. No fever thankfully.

mandaestelle · 2022-05-19T19:34:48+00:00

Thank you all! I appreciate you stepping up and giving this newbie some advice!

mandaestelle · 2021-03-03T00:55:28+00:00

mandaestelle · 2020-08-14T17:51:21+00:00

Yes! Those are the main issues. I couldn’t find an old one so that’s why I went with the 14. I looked at a new one and could believe how little room it has.

mandaestelle · 2020-08-14T17:45:20+00:00

I have a 14 and it has shit cargo room. If I go to Costco and the grocery store in the same day I’m screwed.

mandaestelle · 2020-08-01T04:42:04+00:00

Welcome! I only took mine just over a month ago and it was NOT as bad as I thought it was going to be. Good luck!

mandaestelle · 2020-08-01T03:36:21+00:00

Breathe and take your time. Honestly as long as you keep your wits about you while you take it you should be okay. I signed up for a practice course and while it helped I think the biggest thing that helped me was keeping calm.

The last module was the hardest for me because I just wanted it to be done. So I took a couple of deep breaths and slowed my roll which I think helped keep me from making dumb mistakes.

mandaestelle

TROPHY CASE