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Dad is a little over half done

CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

Just wanted to thank everyone again for all your advice and support (from me and my family).  The past few weeks have been rough, but we are trying to hang in there as best as we can!  As of today, dad has 16 (out of 35) rads left and 1 chemo here in a few weeks to complete.  Oddly enough he was feeling a little better this week. 

Things that have changed:  He has lost about 16 lbs or so, still not wanting to eat due to lack of taste.  He's a little more tired than usual (sleeps in a little longer, usually an early bird!).  His hair is beginning to thin- but that will come back! I just don't want to see the legendary stache go ;).  He doesn't complain much, but I know his throat is bothersome (sore and painful), and the radiated area is looking like a real good sunburn about now.

Things that are still positive:  Dad is drinking fluids and typically wants to drink sweet tea or water.  Those are tolerable, although he has added ensure to his coffee when he drinks it.  His energy level remains ok, he is still trying to do somethign every day to stay active.  Just Saturday he was on a ladder t******** paint as I was rolling out the walls at the new place w/ my mom and my Aunt.  He seems like he is genuinely trying to take care of himself (teeth, etc)- except eating much!

We still gotta work on this eating thing.  I called him 3 times yesterday to ask if he ate and he only ate 1/2 can of cream of chicken soup mixed into a smoothie type thing with milk and ensure.  I'm  keeping on him about that, told him if I have to I'll call off work and follow him around with ensure.  I try to stress the importance of at least getting that down, but I do know it is uncomfortable.  HE is really handling this whole thing like a champ considering the obvious and I hope he continues to stay postive.  We are almost there dad!  I know it seems like forever, but it has gone fast. I pray these next 4 weeks go fast!

Praying for all of you who are going through it or have gone through it.  As well as your families.  Stay strong!  Thanks so much for everyone answering all my questions and encouraging me to stay postiive. 

Cherie

phrannie51's picture
phrannie51
Posts: 3691
Joined: Mar 2012

he sounds like he's doing pretty darn good, to me.  Just gotta get him to take that other half of the can of COC for another smoothie later (criminy, if he can eat cream of chicken in the same smoothie he's getting Ensure, then he truly has lost his taste buds, he should be able to mix just about anything together in a smoothie....LOL).  Maybe try adding 1/2 of an avacodo to a smoothie....they're pretty tasteless in their own right but packed with calories and lots of other good stuff.  For just sipping during the day....plain old 4% milk packs calories, works for hydration, and give a person the illusion they have some saliva for a little bit.

The 1/2 way mark was a BIG deal to me....only surpassed by the single digit countdown....

p

CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

Thanks Phrannie!  I keep harrassing him about eating, which I know it's hard for him right now...but it doesn't seem to make a difference.  Mom is going with him to his next appt with doc on Wednesday to talk about the eating situation with docs. I want him to avoid a PEG, but if he has to do it then I understand why!  I try so hard to understand that eating is way different for him right now, but like you all have said- it's a job now, not something enjoyable until treatments over and taste returns.  1/2 way mark is a great deal but like you said...once we get down to the single digit countdown I will be doing a happy dance!  Ok, I might wait to do the happy dance til it's over and recovery begins! Cannot get him to eat another smoothie or anything. When we went to the house to paint, I purposely brought extra drinks (huge bottled water) bc I just knew he didn't have enough on him!

I hope he keeps this up!

TracyLynn72's picture
TracyLynn72
Posts: 685
Joined: May 2013

I'm so glad to hear that he's doing so well!  Definitely have him eat all he can and stay hydrated.  I wanted to do anything but get a PEG but now that little sucker is my friend :)  The procedure was truly no big deal either.  ((HUGS)) to you and your dad!

CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

Thanks Tracy! I'm glad he is doing so well also!  One day at a time!  I know about the PEG, I don't think anyone wants that, but I know it serves a vital purpose to those who have/need it.  If dad has to have one, I feel a little better just talking to those of you who have had them enough to know its not as big of a deal as what I thought... Hugs to you also!  I hope you are continuing to feel better each day! How was your weekend? I hope you got to enjoy it!

CivilMatt's picture
CivilMatt
Posts: 2934
Joined: May 2012

Cherie,

Your Dad sounds typical.  We think we will keep eating, but it becomes a chore.  However he decides to do it, he needs nourishment, probably more than he can stand.

Keep helping out, it probably means more than you think it does.

Matt

CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

Thanks Matt, I try.  Just found out not too long ago dad will probably have to have a feeding tube.  I posted about it. :( I know it's survival...

Just hard to watch from a daughters point of view

Cherie

patricke's picture
patricke
Posts: 463
Joined: Aug 2006

Hey Cherie, it sounds like, all things considered, your dad's doing pretty good.  I'm glad to hear that he's at the halfway point, so it's downhill now to the finish line.  It is good that he has you to remind him about keeping the food intake up to fuel his energy and activity levels.  Hang in there.

PATRICK

CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

Thanks Patrick.  Just when I spoke, I found out yesterday after work that dad is probably looking at a feeding tube.  It scares me, but I know it's vital for his health. I don't know why it seems so scary because it doesn't sound that uncommon.  Trying to hang in there!  Thanks again,

Cherie

hwt's picture
hwt
Posts: 1912
Joined: Jun 2012

If needed, a temporary feeding tube is not all that bad. In fact, it brings relief in knowing your Dad will be able to get the nutrients that he needs. Of course, I hope he doesn't require one but if he does, like everything else, it's doable. 

CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

Candi,

I know it's necessary if the doctors say so.  Docs are weighing dad twice a week now, but I guess they are not pushing for feeding tube at the moment.  He ate about half a bowl of some type of fiber cereal this morning.  Thanks for your words, I hope you all are continuing to progress as well.  15 rads left, 1 chemo to go. Please continue praying for dad and my family!

Cherie

Roar's picture
Roar
Posts: 239
Joined: Mar 2013

At half way in it started to get really hard to eat and drink anything. I was lucky as I was aboutn40 lbs over weight and I needed every one of those extra pounds by the time Treatment was over. Because even when treatment is over there are still about two or three weeks that are pretty rough . I went from 195 to 160 just narrowly escaped the tube . What I did was:

1- gargle magic mouthwash as long as possible then swallow it- as fast as possible I would drink an insure 

2- eating was not easy same as above with magic mouth wash then chicken broth with an egg or two dropped in for the protein which is a building block for recovery 

3- chicken broth with small pasta like pastina

4- pastina in a butter sauce 

5- soggy double dipped in the egg batter with butter on top was a treat

6- instant oat meal brown sugar and maple I think was a treat

Everything I have mentioned was a timing issue- for me the trick was to have the food ready and not too hot so that when I finished doing magic mouth wash I could eat right away. 

The butter and pasta was nice because it could be kept in the micro wave and small portions could be eaten whenever I had the urge.

good luck and keep up the good work

Ralph

CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

Ralph, thanks for the tips.  I will pass this on to dad. 

Cherie

Roar's picture
Roar
Posts: 239
Joined: Mar 2013

#5 was french toast - sorry - hope your dad makes it through with shining stars - also the pain meds was pretty important at the midway point

donfoo's picture
donfoo
Posts: 1217
Joined: Dec 2012

Along the lines to numb the throat before consuming food, I also used topical lidocaine and carefully rubbed and applied throughtout my mouth directly on the sores and ulcers. This was after the MM routine as you described. Wait few minutes. then have at the grub. worked pretty well.

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