Monday 9 April 2012

Oh what a day what a day!  A bit of a rough night as usual.  I never sleep on my back and here that is my only option.  Was in bed around ten, tossed and turned until midnight when the nurse arrived to take my vitals then dosed off for a pretty good couple of hours.  Woke up played with the buttons on my bed for a couple of hours feet up, head up, feet down, head down.  Attempted to lie on my side......that wasn't going to work, then finally called the nurse and asked for some tylenol.  I am off all pain killers now which is great but I just couldn't get to sleep. Partly of course because of my nervousness about the upcoming swallow test.  Got up at six and sat on my chair for a few minutes then decided to head back to bed for a couple more hours.  Surprisingly fell asleep until I felt Edmund rousing me.  Time to go for your test Madame.  We quickly freshened me up and off I went with the porter to the fourth floor.  They sat me in a cold hallway for probably 40 minutes.  Finally I was taken into the room and told to stand on the platform where they perform the test.  I have drunk many concoctions  but would have to say this one took the cake for being the violist of viol!  Swallow after swallow, turn this way turn that way......swallow some more..."Play it again Sam".  Finally it was over and he told me that he saw some pockets of fluid in the stomach and could not safely give me any more of the liquid to continue the test.  Thank God for that.  He also said he did not feel that I would be getting out any of my tubes and that it would be a bit longer before I would be able to proceed with my heeling process, thus, more time in the hospital, more time with this horrible nose tube and chest tubes and drains.  I was devastated.  They drove me out to reception and left me there for quite some time.  I sat and I sat and I sat.......As you know, I have no voice so I couldn't even raise it loud enough to ask the receptionist if a porter had been called.  Finally I started waving my arms and she came closer and realized I had been there for quite a long time.  They put my on a priority list to get back.  I had been gone from the room for over three hours now.  Arrived back to the room to find Bill and Kelli waiting for me.  They listened to what I told them and then gave me my positive pep talk....When the going gets tough....The tough get going!  Man those are hard words to hear when they are so true.  We were all disappointed but my nurse was curiously not so.  She decided not to change my nose dressing just in case they opted to go ahead and remove the nose tube.  Geoff and Lindsey arrived and I must confess we are starting to look like the East Indian Family that arrives every day on Unit 61 and sits in the area in front of Unit 61 staring at the entrance and visiting for hours.  Anthony, the nurse practitioner arrived and said he had discussed the tube with Dr. Gelfend and they would remove it today. The radiologist who had been performing the test was not their usual guy and they were not concerned by the things he had expressed concerns on.  So the tube would come out, I could have a little water, juice and maybe some jello for dinner.  I have not eaten anything now for 16 days other than the Ensure (I call it Endure) that they are pumping through my feeding tube.  If I"m going to gain weight it had better be on coconut icecream, pina coloadas and cinnamon buns......not that Endure stuff!  Well I'm on cloud nine and Anthony returns once again and says that Dr. Gelfend has decided just to be safe they would pull the tube up 5 cm. tonight and let it drain some of the stomach fluids then remove the tube tomorrow.  If all goes well tomorrow the chest tubes and such should be coming out the next day and I might, might, might just be allowed home by the weekend!  Talk about a roller coaster day.....and talk about a day when you feel so blessed to have the family you do! I still have many challenges ahead I know and they are big ones but one baby step at a time.  Right now I'm just wanting to get home to my own surroundings.  My own bed, my own things.  I would be lying if I said I had been positive every step of they way.  Somedays you don't even want to get out of bed.  Every day the same.......lap after lap around the unit........this is where my family have risen to the occasion.  They have lovingly spooned back to me my motto "Patience, Positivity and Perseverance."

4 comments:

  1. Way to go Leslie. You will feel so much better once you are home, but make sure you are really ready to go (health wise - I know you are ready mentally). Can't wait to hear that you are actually swallowing food! (I guess jello counts as food!) Hang in there. You have come so, so far. You really are amazing you know!!

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  2. Leslie you continue to be my "hero". I think of you often and admire your bravery. We miss you so much at the "Ranch". Things are just not the same without your quick wit and your laughter. I am so thankful that you are surrounded by a caring, loving family each and every day. Stay positive my friend...There are so many people (and an adorable critter) who adore you! xoxoxo
    Deb Dunham

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  3. You may not be able to talk out loud Les but as I listen to your written words I can hear your voice very clearly! That's what friends and family are for - you don't always need to be "heard" to be understood! I think of you and the "fam" everyday and pass on your continued progress! Stay strong mentally and the real physical strength will follow - love you all!

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  4. Leslie, thank you so much for sharing your daily story on this blog. Everyone knows cancer is horrible, but you have so bravely shared every high and low. We are thinking of you and crossing our fingers(and toes!) at each important stage in your recovery. Your own bed will feel like luxury and you will be in it soon. Love, Veronica, Derek, Kiah and Tristan

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