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You can be fabulous even if you don't feel or look that way!

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

Yesterday, we had to head down to Johns Hopkins for a follow-up. Firstly, they had to take out the safety buttons from my PEG implant. That was a piece of cake. Then we met with the nutritionalist and went over the game plan again and how I was doing.  After we got the hang of it and found the right flow rate, it's been easy as well. It's just still weird ;)  As it turns out, I'm NOT to try and take on any soft solids or heaveir than water liquids by mouth until I heal a bit more. My throat is looking better (and feels better) but my tongue feels like one big open sore. Thank goodness for narcs and Magic Mouthwash! Apparently, the rads burnt the poo poo out of my throat, tongue and epiglottis and they need time to heal. Both my MO and nutritionalist feel I should be able to start trying some soft solids next week.  I was scheduled to get a round of hydration and magneseum but my blood woork showed a marked improvement from last week. My blood counts look much better as did everything else so they didn't have to do that.

All in all a great report. We had a friend drive us to and from Baltimore as I'm really in no shape to drive any long distances. When we got yesterday around 5pm, I promptly passed out in my chair and didn't awaken for 4 hours. A very short time awake, some fluids and nutrition and I was off to sleep again and have been out of it sans bathroom breaks until almost noon today! It was funny... they asked how I was doing and I told them I'm still really hurting. They told me the same thing you've all said. Believe it or not, despite how you feel and look, you're doing great and it will get better! ~lol~ 

"T"

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

Dang, I thought that might be a new song title you are working on and I was privey to an exclusive..., LOL.

You can be fabulous even if you don't feel or look that way!

Hang in there, little by little, day by day...

JG

CivilMatt's picture
CivilMatt
Posts: 2866
Joined: May 2012

T,

How fondly I remember those first post days (and weeks).   You are headed in the correct direction with the freeloader (Jack) by the wayside.

Keep taking it easy and take life as it comes.

Matt

Sunshine60
Posts: 74
Joined: Apr 2013

What a great post to read especially since we are just starting this journey. We'll find out tomorrow when my husband starts the RADS.   I so wish we were done.   I think we are as prepared as we can be, and it gives me hope to follow many of you that had just started when we found this site.  I read the updates everyday.  Nevertheless,  so scared of the unknown.   I hope my husband is one that does well with few complications.  Thank you for keeping up the positive mindset. 

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

John and Matt...

I'm defitely taking it easy. I really don't have a choice as my energy levels are practically nil. A short trip to the store and post office an I'm ready for a nap! ~lol~ 
Tomorrow will be two weeks since treatment ended and I am seeing slight improvements. It's just that they happen so slowly that you can almost miss them. I know I have to be patient but dang! I'm ready to wake up to a significant breakthrough!

Sunshine,

Compared to the list of rad/chemo side effects and what "could" happen, I've been fortunate that I ran into relatively few complications during treatment. You really have to take things one day at a time. Make sure you report anything and everything concerning pain and discomfort as well as anything that seems out of the ordinary to your team. I won't sugar coat it, physically, the treatment is brutal no matter how much you prepare. Your husband is going to be hurting as will you. As a caregiver, there's only so much you can do. If he gets crabby (I'm tempted to change my name to "Grumpy"), give him space. There were times I just couldn't carry on a conversation nor focus on anything because of the pain and just needed to go inside myself and deal with it. 

The most difficult thing for me personally was the nutrition aspect. Because of the throat and mouth pain I couldn't keep up. Even hydration became an issue as I really couldn't get enough fluids into me. I was getting hydrated almost every day from week 3 on. Now that I have the PEG, I'm doing better.  

It's funny... many here as well as at the hospital commented about my positive attitude. Maybe so but I'm hard on myself and there were/are many times I just don't see it. But at the same time, I tend to laugh when things get to the ridiculous stage and believe me, this treatment gets pretty ridiculous! 

Best wishes on your journey. Follow the rules and listen to your team and you'll both come out fine. 

Positive thoughts and prayers

"T"

 

phrannie51's picture
phrannie51
Posts: 3628
Joined: Mar 2012

when you have to go to the Dr. to find out you're doing great...that self knowledge availed you nothing?  Laughing Glad to hear tho, that you're doing so well....and that by next week you might be able to do some mashed taters...wonderful!!

Sleep and nutrition and water are your current occupations and hobbies....each one boosting you along the way to recovery....

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

P,

Wouldn't it be great to get paid to sleep, drink and eat? I'm really good at all three! ~lol~ 
The thing about doing so well is that "I" don't feel it! This is the team saying this. I have to take them at their word as this is what they do 24/7/365. 

Looking forward to mashed taters :)

"T"

debbiejeanne's picture
debbiejeanne
Posts: 2288
Joined: Jan 2010

t, a great attitude is everything and u definitely have that!!  Cool  keep up the positive vibes and u'll b fine.

dj

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

Ok, just a few more days and the worst is behind you.  It will be slow, but you'll see the small gains.  Sometimes two steps forward one back (usually the next day) but quickly 3 forward and 1/2 back.  You are doing great, you are almost at home plate.  Good job!

J.

Grandmax4's picture
Grandmax4
Posts: 579
Joined: Dec 2011

concerned that your epiglottis was injured, my de vinci robotic surgery November 2,2011, removed my epiglottis..(jack was on my epiglottis)I'm proof, that you can learn to swallow without aspirating into your lungs..it was a rough road, but can be done. Today, 1year, 6 months out I can eat anything

My prayer is for you to make a complete recovery and be back to making musicCool

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

Gmax4,

My RO told me that it was due to "gravity". When I laid on the table, my epiglottis hung down into my throat and was exposed to the rads. There was nothing short of tying a string to it that would stop that from happening. It has affected my swallowing to a degree. However, it is getting better. 

My nutritionalist feels I'll be off the tube feedings in less than two months. I'm really looking forward to eating again! Concerning music? I have no idea. I have some gigs booked the end of the Summer. I hope to be able to perform. I think my voice will be fine. It's the physical stamina and dry mouth I'm most concerned about. My left arm and shoulder are a concern as well. The nerve damage from the neck dissection has caused weakness. If I can get to the point of feeling well enough to get back to working on the physical therapy stuff, I'll hopefully be Ok. 

I've already made the decision to cut back on the gigs from here on forward. I was playing 100+ shows a year plus working full time. Frankly, I just don't want to work that much. I have a few choice gigs that I'll keep and leave it at that. 

"T"

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

My epiglottis was in the rad field also and it is swollen like T's.  My Ent & RadOnc said it was not all that unusual.

Joe

donfoo's picture
donfoo
Posts: 1165
Joined: Dec 2012

"T",

Glad the trip went well and you have some sense of plan for nitrition and healing. Take care and open that Skype windows!

foo

Duggie88's picture
Duggie88
Posts: 528
Joined: Feb 2010

Glad to hear your doing great. Well not as great as you want to be doing, but pretty much on target as your health care team states. Your  epiglottis will do fine, they took mine out because that was my primary. I learned to swallow without it and have been chowing down ever since. I will never be able to participate competitively in a hot dog eating contest but I am happy watching others do it. As for making decisions as to how many shows you want to do wait until the healing process has progressed more you may have second thoughts on limiting your gigs. Right now a tired hurting "T" is making the decisions.

Keep with the healing, soon you will be able to stay up past four hours without a nap.

      Jeff

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

Give it another week or so....

But what really makes a difference in your energy levels is when you start getting enough decent food in you to give your body the fuel you need.

When I was in your place and only taking in Ensure and water, I had basically no energy.. It was hard to do much more than hang out and drool imaginary drool, watching and recording the food channels...

JG

HobbsDoggy
Posts: 165
Joined: Feb 2013

I am going on 5 months out and my engery level has returned to maybe 80% of normal.  One of the side effects of the whole deal was depression, and that did and does sap some engery from me.  Slowly recovering from the depression also.  I understand that depression is a frequesnt side effect of cancer and treatment adn with meidication can be handled.  The engery level for me took some just keeping at it to get back to somehwat normal.  Was told that 80% at 5 moths out is good and somewhat ahead of normal recovery.  A long road for sure, at least for me, but getting there.

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

I think 80% at five months would be huge... But realistically, I think most of us are lucky to have 80% at a year or more...

It took me nearly a year before all of my blood labs returned to normal ranges...

JG

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

T,

you keep getting better buddy.  Rest as you need to that battle was rough and you need time tyore store your energy back to your old self.  It's funny ever since I got better my body temperature has changed, I am almost always freezing and it's rare that I sweat, so you have some new bodily changes to Check out as you heal.

 

i pray for you nightly and send good Vibes all day!

 

 

love to you and Marcia,

Rachel

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