Sorry you have to be with us, but welcome! You have a bit of an advantage, being more familiar with the overall process than most of us were. I'm sure it's still pretty scary though.

I had a similar surgery and timeline as what you are facing. It was scary, but my friends and family helped me through it. We went crazy, binging on movies and going out for dinner as if it would be my last meal. Somewhat morbid I suppose, but it was really great to be able to keep my mind busy & escape from all the constant thinking & wondering what is going to happen.

Make sure you have a notepad and pens/pencils (with spares because those damned nurses steal them, haha). Or a whiteboard with dry erase marker and something to erase it with, is an even better option. You most likely won't be able to speak when you get out, and have all this crap hanging from various places on your body. This will be how you communicate in the first few days.

The trach was the worst, for me. It slowly plugs up with thick saliva & then you start to worry that you won't be able to breath. Even though I was in a step-down unit with about 3 nurses per 5 patients, it could sometimes be a few minutes until the nurse could come by to suction out the trach. Terrifying when I was laying there unable to breath, but couldn't sit up because they have a NG tube down my nose, a bunch of gauze and what looked like a cardboard French fry container strapped on my wrist, an IV drip, heart rate thingie clipped to a finger or toe, a catheter, etc.

Then you get over the hump and it all gets better from there. Get out of the hospital once you prove you can eat enough calories without the tube, head home to more familiar & relaxing surroundings, etc. Not sure if you'll end up getting radiation, but I did, about 5 or 6 weeks post-op. Then 5 weeks of getting zapped five days per week. After healing significantly after the surgery & feeling a lot better, this happens & it's also not very nice. I didn't find it nearly as bad as the surgery though. Some people have problems with being strapped down to the table and having that machine hover over them, but I thought it was actually kinda neat. Not to mention my mindset of accepting that I had cancer, accepting that I knew much, much less about it than these professionals that do this for a living, and letting them just do their jobs & help fix me. And for me, motivation to get back to life as it was before this chapter began.

You can do this. You have a husband who can help you through this, kids to fight for, and probably other family and friends who can also step up & pitch in where they're needed. Simple things like coming over to your place to help clean, prepare some meals, lend you some books & movies to watch (because you will have a LOT of downtime & you can only sleep so much).


Dx 2014Jan29 (42 yr old otherwise fit nonsmoker)
SCC tongue stage III T3N0M0
subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital
RAD 25 zaps 2014May5-2014Jun9
Back to work, paddling & hiking shortly afterwards