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.

Progress

I'm feeling quite spritely and happy this week!  I am slowly feeling a little bit more human.  I managed to drink an entire vanilla milkshake this week!  I know, right, totally amazing!  I still couldn't taste it, which was sad, but I was able to slowly drink it.  Progress!

As things start to return to normal I'm filled with an interesting blend of excitement but also a little trepidation.

Excitement, as all those things I've missed doing are getting closer to returning.  Eating and drinking!  I can't tell you how much I've missed just sitting down in the morning with a nice cup of coffee.  I can't wait to have the feeding tube removed.  I've lost a reasonable amount of weight (much to the dietician's annoyance, but hey, I am now fitting into pre-baby clothes...actually, I'm now getting into pre-other-babies-who-are-now-11-and-13-clothes! There's got to be an upside) I'm hoping that once I return to eating real food that that weight doesn't come back.  I'm also curious, thanks to my 13 year old, whether my taste buds will like the same food as before.  I'm looking forward to getting back into my kitchen to bake up a storm with my cookies.  I'm looking forward to driving again.  To going out with my girlfriends...having our girls' nights' out.  Even to doing regular things like cleaning the house again.  A big thank you to my parents for doing it for us at the moment!

Trepidation, as I hope the treatment was successful.  It seems wrong, I know, to think so negatively, but I am almost a bit scared to hope for the best.  I don't want to jinx it.  But given what they've told me of the nature of the cancer, I'm almost a little hesitant to say I'm cancer free.  Please don't misunderstand me here, I'm certainly remaining positive, I'd be lying if I said I was all the time though. Really, these are just those little niggles in the deep, dark recesses in the back of the mind. They usually only surface in the middle of the night when you can't sleep. You know how those thoughts work.

Happy New Year

It has been just over a week since my last treatment.  I've been back to the hospital to see the Doctor and the Dietician.  I'm thrilled to say that our conversations have now moved from how to manage pain, feeding, and weight, to how I will be reducing my medications and starting foods orally again!  I'm still on a hefty dose of morphine, and will be for at least another week before we start to decrease the dosage.  Even though the treatments have stopped the effects have still continued.  My skin is looking amazing, it has very quickly gone from raw wounds to now just looking like a sunburn.  It's even flaking and peeling like a sunburn!  My mouth, however, continued to get ulcers this week and has still been so incredibly sore.  Particularly in the morning before I've had my medications.  I'm still thankful that they are fast acting!

I'm now down to weekly visits to see the Doctor and fortnightly visits to the Dietician.  I'm done with the radiotherapy treatments. Does that mean I can say that I'm cancer free? In remission?  I have to have a scan in approximately four weeks' time where they will check to see the effectiveness of the treatment.  I don't want to even think on it, really, because the "what if's" scare me. 

So from this point on my focus is going to be one of positive healing!  I have so much I want to do this year and it all depends on me getting healthy.