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Update..

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Hi,

Not much rest or sleep lately.  Last night we were watching for low blood sugars, I don't do well if trying to wake up and at getting back to sleep before the next alarm goes off.

Then, after 7 liters of saline in 5 days home, and a additional loss of 6 more lbs in 3 days, the Dr has decided to start TPN feedings this coming Tuesday. Fortunately, Dan is asking for help.. So it's better that he gets how much he needs help. I am a bit nervous since I have read all the possible side effects.. Just hoping this is a positive experience. 

So if we can manage without any major events this weekend we get to go back to Philly on Monday, but this time, for just one night. Last weekend his neck looked to be doing better, and then the entire thing got red and looked like he was going to melt.. This week, his mouth has done it twice in three days... We are back to barely eating again.

If anyone doesn't mind sharing, How long did it take others before the 'cooking' stopped flaring so severely?

appreciate your support as always!

Sleepless at the shore... 

Kari

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

Kari,

 

 

Sorry you have hit a rough patch, but there are smooth roads  ahead.

 

For me, weeks 6, 7 & 8 were the worst with the neck burn (if that is what you mean).  A slathering of Silver Sulfadiazine Cream works wonders.  The neck burn was the worst pain of my side effects, but the cream used accordingly took all the pain away.

 

If you mean cooking from rads it varies for each of us.  Even though I started to feel better, my voice got worse, the thick spit and phlegm continued and the taste buds were pretty nonexistent.

 

Today, I feel ok, I have drank around 6 glasses (so far) of water, 4 cups of coffee, ate 2 bran muffins for  breakfast, ate a ham sandwich for lunch and  had pizza for diner and worked from home all day (off and on).  10 months ago, I drank 10 glasses of water, 2 cups of coffee, 3 smoothies and slept.  Things truly do get better.

 

Best,

 

Matt

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

All of you are such good examples of getting better and you would probably not be surprised at how nany times a day I think, Matt is better, Phrannie is better, John is better... Dan has to be getting better somewhere.etc.. And the outside skin on his neck is visible better in a lot of ways, where his surgical site was the focus of treatment, it's better but still always away.

i guess when I wthis eyeing the skin calm and then starting to see his mouth and throat calm, I thought the not feeling better would be in his general feeling, didn't think that his throat and mouth could continue getting more angry every few days.. It's like one step forward, two back.. But he is  two weeks away from his last treatment this Tuesday.. I just have to think 2 more weeks.. And be pleasantly surprised if its less!

i promise, I'll keep the faith!

 

Thank you, Kari

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

Take One Step Foward, Two Steps Back...

Kind of like a jig, it's so simple, it plumb evades us...

 

It could be the CSN theme song and dance, LOL...

It's something so common to many of us over the years.

Eventually the steps forward are much more fequent than the steps to the rear....

 

Best ~ John

 

 

phrannie51's picture
phrannie51
Posts: 3636
Joined: Mar 2012

he's really having it rough (and so are you!)....it's the two or three weeks after treatment that are the worst.  I don't know what TPN feeding are (is that the intervenious feedings?)....if so,then at least he'll be getting the nutrition he needs until he can use his mouth again.  It WILL get better, I'm just sorry he's suffering longer and worse than most.  I have to say, I'm glad he knows he needs help and is accepting it!!!  Good for you, Dan!!

p

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

A type of tube feeding...IV drip..

The cooking process is a little different for all of us, but like mentioned, usually 3-4 weeks post rads. After that most start seeing improvement verrrry slowly. Measured in weeks and months, not days...but you do see improvement, and even better you feel improvement...

Best,

John

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Is all he needs. Yesterday for the first time in the past 4 months I heard, what am I doing wrong? I have reminded him, it's not personal, it's not something you did... It's the chemo and radiation poisoning ... He's done very well so far in outlook.. Just have to keep him going!

thanks John.. You'll always make me feel better!

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Yes, the TPN is the intravenous feedings through a picc line. It will make the IV fluids easier too. No more sticking him every 3 days, just labs once a week.  I am so looking forward to seeing a man that doesn't 'feel' defeated when it comes to eating.. With a little strength from nutrition will go a long way!

it is so hard watching someone starve And waste away.

Kari

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

I cooked for 6 weeks!!!  It was the hardest part ..and the mucus stuck around for 8 weeks.  I remember one day getting up afraid it would never go away...like something was wrong ....well, I was wrong,,,,it went away and it got better. His will too....all body's respond different....

Whispered a prayer as I hit post things will fet better soon....

 

Sorry for the delayed post ...really working hard lately and having to check on my family here late in the evening!!

Tim

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Tim,

Thanks for the prayer! Dan  is finally starting to turn that corner. With a little nutrition help! Whatever it takes!

It sounds like you are having a very busy winter. I read the wood story.... Just amazing! I hope your weather turns warmer sooner!

Kari

cureitall66's picture
cureitall66
Posts: 846
Joined: Aug 2012

Kari,

All I can say is time and patience are what are needed. We are 9 weeks post and just starting to see some better improvements. The time during tx and then the next 3-7 weeks are the hardest. You just have to get through one day at a time, sometimes 1 hour at a time. No two days are the same, so we must follow what our bodies are telling us it needs. It's a long tough journey and not one that anyone wants to travel again, but we don't have a choice but to take it in stride. 

I found this forum to be a very BIG help for tips and support and I hope you do too. My advice, as a caregiver, is to be patient and work with him the best you can. He will feed off from your patience. I know it's hard...but, he will get there. We are getting the PEG Tube out today and excited to have that foreign object out....but it was a LIFE SAVER!

Good luck,

Cureitall (Cris)

 

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Cris,

You are so right about patience. I am ok, if I don't get hit from left field, get enough sleep, and know that Dan is getting the right care.. Today the patience are great.. a small hiccup with his Central lines and I am still ok.. so you are correct, he's calm about it. As long as he gets the attention he needs, I am good.. but jeesh I know I am not far from the patience's dropping off point at any time... but it is nice that the last day or so.. I am learning what patience are again.. it's been a long time..

Kari

Mikemetz's picture
Mikemetz
Posts: 334
Joined: Nov 2011

Like so many of us at the time, you and your husband are anxiosuly looking forward to the day when things start to get better.  The real trick is not to do that--just let his body heal at whatever rate it will, and accept that rate for whatever it is.  If you could fast-forward to a year from now you'll both be looking back at all that you went through to make it to that point, and how fast you got there won't really matter then.

I call it "treatment fatigue"--both your husband as the patient and you as the caregiver just get pooped from your energy being drained in the long process of it all. Don't measure progress in terms of days--measure it in terms of weeks and months.  When you do that, you'll figure out that both of you are better than you were a week ago, two weeks ago, a month ago, and so on.

This whole thing is as much a test of mind and spirit as it is a physical test, maybe moreso.

Mike

 

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

and hoping the side effects will start to decrease soon.

 

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Thank you for the kind words Grandmax.. I hope you are having a great day today!

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