Out It Comes

All this week I have been trying to transition from using the feeding tube to taking stuff orally.  It has been a pretty tough week.  I didn't anticipate that my tongue would forget how to move foods and liquids from the front of my mouth to the back and swallow it.  It's amazing, really, how quickly I, and my body, got used to taking everything through the tube.

I started by drinking water.  Easy.  No worries.  By Tuesday night I was feeling pretty cocky and good about things so I tried to have some mashed potato and gravy.  No good.  Disappointed.  ~ This whole process seems to have taken such a long time.  I feel like I'm so close to my old self yet so far away.  It's deceptive, too, with my skin clearing up and healing so incredibly quickly.  It doesn't reflect the deep tissue damage that is still within my mouth, tongue and throat.  ~

Not wanting to be defeated, I thought back to the last real food I'd had, and decided to try some scrambled eggs at dinner time last night.  Success!  I had to numb my mouth with the local anaesthetic first and went really slowly but I did manage to eat 3/4 of my plate of eggs!  Super happy with myself!

All this effort to get stuff in my mouth has been leading up to today's appointment at the hospital with the Oncologist and the Dietician.  At my last appointment they had talked about the possibility of being able to remove the feeding tube.  ~ I'll just add here that as much as I wanted it out there was a part of me that was afraid to get it out.  Especially as it still hurts to put things in my mouth and once the tubes out there's no easy options. ~

This morning's appointment went really well. The Oncologist was really please with how my skin had healed.  He commented that the deep tissue damage of the mouth, tongue, and throat were also healing well but they'll take a lot longer before they match the outside.  ~ Quite deceptive really.  While people may think I'm doing really well, and to a point I am, I have a long healing journey ahead of me still.  ~ 

So with the news that all is going well and after being able to share with the doctor and dietician how my week of orally feeding myself had gone, the decision to remove the feeding tube was made!  Hooray!!  The next bit was a bit erky though.  The bold yellow tube going into my nose did not come out of my stomach and nose that same colour.  The contents of my stomach had turned it a yucky black colour and as it came out all I wanted to do was vomit.  Have to say I'm really pleased I didn't!

Even though the tube is now out and I'm looking like my old self again, I'm not there yet.  I'm still on a liquid diet as "real food" is still too much to cope with.  I have a few more weeks of drinking Ensure Plus, Sustagen, and soup before I'll be ready to take solid food. The other main detractor to "real food" is my dry mouth. Now that most of my salivary glands have been fried beyond belief by the radiation, and will not ever recover, I don't have enough saliva. I'm grateful to the products that are available to help in this department but I'm still mentally struggling with using fake spit!  I'll have to get used to the idea soon though, as I'll have to use it for the rest of my life.

As this next few weeks roll on I'll continue to try and increase what I can take orally. I'll also continue to wind back the Morphine as my pain levels drop. Once I can get off of the heavy pain medications I can start to think about returning to work and returning to normal. A new normal.