I SURRENDER - THE PEG GOES IN NEXT TUESDAY

luv4lacrosse

Kimba1505 said:

It is all how you look at it...
Mark had the PEG put in during his first week of treatment and did not need to actually use it until his last...but need it he did. I, as his caregiver, and his romantic interest, looked at it as a new part of him that I wanted to get my hands on!! Before he needed it for nourishment he would sometimes allow me to flush it out. Call me weird, but it put a kinda fun spin on it. I called it our "new intimacy". Go for it!!
Kim

ALL NEW PERSPECTIVE
I must say I have not looked at it quite like that. I did name my hose larry. The flushing part is a little wiered as the contents do not look very appetizing.I just called my wife over to read your thread,it must be a girl thing as the likes the "push & pull" of a hard syrenge.

Is mark still progressing well?

I am in the middle of some of the worst side effects I think this crap can dish out, but I have 8 Rads left and one Cisplatin left. I expect to ring out on 10-20.

how long did the residual side effects stay with Mark once he ended his treatments?

Best!

Mike

Kimba1505

luv4lacrosse said:

ALL NEW PERSPECTIVE
I must say I have not looked at it quite like that. I did name my hose larry. The flushing part is a little wiered as the contents do not look very appetizing.I just called my wife over to read your thread,it must be a girl thing as the likes the "push & pull" of a hard syrenge.

Is mark still progressing well?

I am in the middle of some of the worst side effects I think this crap can dish out, but I have 8 Rads left and one Cisplatin left. I expect to ring out on 10-20.

how long did the residual side effects stay with Mark once he ended his treatments?

Best!

Mike

Share with the wife...definitely!
Mike,
I am chuckling that you shared the post with your wife. It is a bit of a role reversal, so to speak, with us getting to deliver...if you get what I mean. LOL.
On a less light note, I am so sorry to hear your side effects are so many. It does make it harder to stay on the light side. Attempt at humor is always worth a try, and as caregiver, it is important that we show/have interest in every part of what you go through.
Your road was not set as an easy one from the start, surgically. Sorry that the chemo rad part didn't take you on the "not so bad" road.
Follow the advice from those here...they know best. Mark just told me today, looking back, he felt the time with unbearable constipation was the worst. It was the one day he verbally asked me not to leave.
Hang in there, you are in the final stretch. And to finish out with the Cisplatin (BIG BIG guns) is huge! As you know many have to let it go, because the side effects are too bad and too damaging. Know that as your body is subject to its wrath...you are getting the gold standard of chemo treatments.
Rads... the damage they do is brutal. By the end of treatment Mark's inside and outside were burned terribly. I am trying to remember how long the worst of it lasted. There was what I could see and what I could not see. He finished on July 20th, and on August 11th he was eating BBQ wings and drinking a beer at my Dad's 75th. He couldn't taste a whole lot, but I remember him feeling like he was a part of things for the first time.
Mark, I think, was kinda unusual. One who faired better than the norm.
The one thing to remember, is no matter what, do not stop swallowing. As you take nutrition through the tube, find something that you can swallow. I made a shake for Mark with Ensure, Carnation Instant breakfast, L-Glutimine, fresh berries, and sherbet. He liked the consistancy, because really the taste didn't matter; but in his head he liked what was in it, and that made it more tolerable too.
Mike, you are close to the end...but I also remember feeling like those last days went in slow motion. There is the end, and then there is the beginning of recovery...but not going in every day for treatments was HUGE...regardless of the cooking time that remained.
You are of strong mind and that is crystal clear in your emails...I would say that was Mark's best asset. He too had a very strong mind and determination. He tried to keep as much normalacy in his day as possible. We both felt we were always working towards the cure; and realizing the "it has to get worse before it gets better" scenerio. But then it gets better.
Mark and I went on a 20 mile bike ride today. He did the hills better than me...cancer, really? He kicked butt...my butt...and I'm no slouch.
Hang in Mike, I always read your posts and keep an eye on you.
My Best to you and your wife...find fun where you can. (wink wink)
Kim

luv4lacrosse

Kimba1505 said:

Share with the wife...definitely!
Mike,
I am chuckling that you shared the post with your wife. It is a bit of a role reversal, so to speak, with us getting to deliver...if you get what I mean. LOL.
On a less light note, I am so sorry to hear your side effects are so many. It does make it harder to stay on the light side. Attempt at humor is always worth a try, and as caregiver, it is important that we show/have interest in every part of what you go through.
Your road was not set as an easy one from the start, surgically. Sorry that the chemo rad part didn't take you on the "not so bad" road.
Follow the advice from those here...they know best. Mark just told me today, looking back, he felt the time with unbearable constipation was the worst. It was the one day he verbally asked me not to leave.
Hang in there, you are in the final stretch. And to finish out with the Cisplatin (BIG BIG guns) is huge! As you know many have to let it go, because the side effects are too bad and too damaging. Know that as your body is subject to its wrath...you are getting the gold standard of chemo treatments.
Rads... the damage they do is brutal. By the end of treatment Mark's inside and outside were burned terribly. I am trying to remember how long the worst of it lasted. There was what I could see and what I could not see. He finished on July 20th, and on August 11th he was eating BBQ wings and drinking a beer at my Dad's 75th. He couldn't taste a whole lot, but I remember him feeling like he was a part of things for the first time.
Mark, I think, was kinda unusual. One who faired better than the norm.
The one thing to remember, is no matter what, do not stop swallowing. As you take nutrition through the tube, find something that you can swallow. I made a shake for Mark with Ensure, Carnation Instant breakfast, L-Glutimine, fresh berries, and sherbet. He liked the consistancy, because really the taste didn't matter; but in his head he liked what was in it, and that made it more tolerable too.
Mike, you are close to the end...but I also remember feeling like those last days went in slow motion. There is the end, and then there is the beginning of recovery...but not going in every day for treatments was HUGE...regardless of the cooking time that remained.
You are of strong mind and that is crystal clear in your emails...I would say that was Mark's best asset. He too had a very strong mind and determination. He tried to keep as much normalacy in his day as possible. We both felt we were always working towards the cure; and realizing the "it has to get worse before it gets better" scenerio. But then it gets better.
Mark and I went on a 20 mile bike ride today. He did the hills better than me...cancer, really? He kicked butt...my butt...and I'm no slouch.
Hang in Mike, I always read your posts and keep an eye on you.
My Best to you and your wife...find fun where you can. (wink wink)
Kim

TAKE FROM THIS SITE WHAT BENEFITS YOU, LEAVE THE REST ALONE
Kim, I try to read as many of your posts too as you are well spoken, and provide down to earth information, advice, tips ETC that i can use. Just like last night when I was reading your post and I called my wife over because she saw a huge grin on my face.

Long stroy short, sometimes I read over a 100 of these things and maybe only 1 or 2 hit home. You seem to be the resident advocate for the caregiver side, which in my opinion gets way overlooked. If I had a choice of either taking care of me for one day, or going to work for one day knowing it will be the worst day of work you ever had, I would gladly go to work.

Patients that have a regular caregiver end up doing so much better. it really hurts to read a late night post from a patient desperately looking for help with something and you know they are sitting somewhere all alone trying to do what we do and sometimes take for granred when you have excellent home / family care.

have a great evening, and here's to a better tomorrow!!

Mike

GraceLibby

luv4lacrosse said:

ALL NEW PERSPECTIVE
I must say I have not looked at it quite like that. I did name my hose larry. The flushing part is a little wiered as the contents do not look very appetizing.I just called my wife over to read your thread,it must be a girl thing as the likes the "push & pull" of a hard syrenge.

Is mark still progressing well?

I am in the middle of some of the worst side effects I think this crap can dish out, but I have 8 Rads left and one Cisplatin left. I expect to ring out on 10-20.

how long did the residual side effects stay with Mark once he ended his treatments?

Best!

Mike

I'm glad I'm not the only one who named their tube
Mine is named Beth.

Hang in there, you're doing great so far!

oldcamper

GraceLibby said:

I'm glad I'm not the only one who named their tube
Mine is named Beth.

Hang in there, you're doing great so far!

ADD WATER HERE
The PEG is a good way to get more water into you to aid in preventing any kidney problems from the chemo. I used to say watch me talk and drink water at the same time. LOL

luv4lacrosse

oldcamper said:

ADD WATER HERE
The PEG is a good way to get more water into you to aid in preventing any kidney problems from the chemo. I used to say watch me talk and drink water at the same time. LOL

HYDRATION
YOU CAN NEVER GET ENOUGH HYDRATION.

HAVE A GREAT DAY

BEST!!

MIKE

Greend

luv4lacrosse said:

HOME NOW WITH MY NEW LITTLE BUDDY
I was discharged from the hospital this past Friday after having my PEG inserted. They have plasced me on Isolyte, some type of soy based high protien high calorie fluid. I just started sipping some liquid by mouth, but with the bi lateral radiation, my entire mouth and tonge and throat is completely raw and on fire. The most annoying side effect I am having is sweating, (24-7) even with no fever. My wife thinks that the healing process has something to do with this along with the burning of calories. I can fill a small mason jar 1/2 of the way up with the expelled secretions just from sleeping. I know we all react differently, but I seem to have been hit with the motherload of side effects.
I have just 8 Rads. and 1 Cisplatin treatment left. I think I ring out on the 20th.

Any ideas on how long after my last treatments I will still have these side efects??

All the best!!

Mike

Sweats at night
13 years and I still have night sweats.

Welcome to "New Normal"

Denny

PS Beats the options; at least we are here to sweat