There is some light ahead

ian1511

Had my one month follow up on June 14th. I had been off work for 3 going on 4 weeks. All my follow ups have been with the radiation oncologist and my oncologist. I have not seen my ENT since he referred me to oncology. I was told that eventually I'll see the ENT again. I know that for many here ENT is the coordinator. My rad/onc doc has been the chief for my NPC.

The rad/onc was very happy with my condition. The skin on my neck had finally grown again and gone were the burns and peeling dead skin. The skin on my neck is very dark compared to the areas not irradiated. No pain on the neck. I have relatively full neck range of motion.

Swallowing pain is at worst 5 (0-10). I only use morphine 15 mg extended releaase before bed together with 1 mg of lorazepam. He thought that needing only these two meds was great.

He said my energy level was much improved than when he last saw me. I completed radiation on May 25. I had lost about 27 pounds over the course of the 33 rads and 3 chemo sessions.

Long and short of it: He said I should be ready to return to work in one month. We agreed that if I return now, I would be setting myself up for failure.

Although I agreed with the month length, since I feel OK overall, my main concern was eating. I'm still on tube feeding.

So, since I was given the timeline to return to work, I've encouraged myself to try to swallow. I have now been able to drink Boost, cream of celery soup, and this morning an actual pear that I skinned and sliced into 1/8 inch thickness. The pear actually felt great. Taste not quite there, but I could taste pear. When eating the pear, it felt like I had saliva and was able to swallow each slice after a few chews. Perhaps it was the juice from the pear. Also, I was able to eat a 1 cup of cream of wheat with milk. I was so happy this morning. It gives me hope that when I return to work, I can at least eat something and not need the FT until I return from work. Oh, when I ate the cream of celery, I could taste a small amount of salt with small amounts of soup swirling around my tongue.

I share this with you, because I know there are many who are just starting treatment or at various stages who are still wondering about possibilities. Granted, we are all different, but I'm sure that we have many similarities as well.

So, I do see some light and I am extremely grateful to God for this positive progress. I also continue with acupuncture and really like acupuncture that I think is healing me at many levels. Darren

Hondo

great news
Darren I am very glad to hear your doc giving you the OK to return to work so soon, that is fantasy. Just remember go slow at first and build your way back up, this will give your body time to adjust.

Take care
Hondo

luv4lacrosse

CONGRATS
Congrats on the good news. That always helps to keep the positive energy flowing. Hondo is right on when he says "take it slow" on your attempt to return to work. We have all probably tried one thing or another too fast and too aggressively and set ourselves back in our recovery process.

I know, I am one of them. My old montra was "go hard or go home" I know go as hard as I know my body will allow, then I go home.

Take care

Mike

Glenna M

Thank you Darren
Thank you for sharing your experience with everyone here, especially the newcomers. It may help so many of them realize that there is hope, it just takes time to see the improvements.

It's wonderful that your doctor thinks you can go back to work in a month but you need to build your body up again before taking on too much. I would also encourage you to try to wean yourself off the feeding tube as much as possible before returning to work. I only had mine for four months which is only one month post treatment.

Praying for continued improvements!!

Stay strong,
Glenna

sweetblood22

Glenna M said:

Thank you Darren
Thank you for sharing your experience with everyone here, especially the newcomers. It may help so many of them realize that there is hope, it just takes time to see the improvements.

It's wonderful that your doctor thinks you can go back to work in a month but you need to build your body up again before taking on too much. I would also encourage you to try to wean yourself off the feeding tube as much as possible before returning to work. I only had mine for four months which is only one month post treatment.

Praying for continued improvements!!

Stay strong,
Glenna

Thanks for sharing your news.
So happy to read of your excellent progress. Keep it up, sounds like you are on the mend. Definitely make sure you are able to eat well, and that you aren't relying on the peg for most calories. Make sure you give your self plenty of time to recover and don't push yourself too fast. Remember that treatment really knocks down your immune system. You need to build that back up.

ian1511

Slight set back...or incentive
I have been having problems with my PEG site. I have a G-button used in most pediatric patients. The ostomy site has been leaking clear gastric juice on one side for a couple of days now. Just a slight drip, drip, drip. Now the skin, a sliver is excoriated around the ostomy. It is painful as hec, it burns. The surgeon is off this week. The on call surgeon's nurse told me to use Zinc oxide ointment around the PEG, which I've beein doing. It helps for a while until more juices cut through the zinc oxide. Man, just when I felt things were looking up. I still think they are, I just wish the surgeon had put in the regular PEG rather than this button thing. I'm going to talk to him next week. I'm wondering how difficult it will be to replace this button with a regular PEG tube. The reason being, I think I'll still need the PEG for a few months at least for insurance. Any thoughts? Thanks, Darren

Pam M

Good To Hear
Congrats on your progress! I think it's very helpful for others to see "success stories" - people who are doing well. Very often, people who do well are hesitant to post because they don't want to rub it in the faces of people who have a more difficult time. This may give some people a skewed view of what they can expect. Don't get me wrong - I don't want the folks having a difficult time to not post - I think it's helpful to see the full spectrum.

sweetblood22

Pam M said:

Good To Hear
Congrats on your progress! I think it's very helpful for others to see "success stories" - people who are doing well. Very often, people who do well are hesitant to post because they don't want to rub it in the faces of people who have a more difficult time. This may give some people a skewed view of what they can expect. Don't get me wrong - I don't want the folks having a difficult time to not post - I think it's helpful to see the full spectrum.

Pam, that's funny because I
Pam, that's funny because I used to not want to post because I had such a hard experience. I then realized we all should just share our honest truths and stories as all our experiences should be taken and weighed as a whole. As well as they are all helpful to someone at sometime. Not sure if that made much sense, lol. It did in my head, anyway.

Darren, I am surprised that you don't like your button. I had three different tubes, the last one being a mic-key button, and I much preferred that over the other two. I don't understand some of the terminology that you used, but I do know that the only time mine was bugging me, towards the end, was when I had some granulation tissue around the hole. It was pink and kind of looked like your lips do, that kind of tissue. It hurt and bled a bit. It was really annoying. The lady who used to change my tube every three months gave me some cream to put on it and it would dry that tissue up and it would fall off and I would feel much better.

I don't know if that is what you are experiencing, but I thought I would throw that out there just in case.

Scambuster

ian1511 said:

Slight set back...or incentive
I have been having problems with my PEG site. I have a G-button used in most pediatric patients. The ostomy site has been leaking clear gastric juice on one side for a couple of days now. Just a slight drip, drip, drip. Now the skin, a sliver is excoriated around the ostomy. It is painful as hec, it burns. The surgeon is off this week. The on call surgeon's nurse told me to use Zinc oxide ointment around the PEG, which I've beein doing. It helps for a while until more juices cut through the zinc oxide. Man, just when I felt things were looking up. I still think they are, I just wish the surgeon had put in the regular PEG rather than this button thing. I'm going to talk to him next week. I'm wondering how difficult it will be to replace this button with a regular PEG tube. The reason being, I think I'll still need the PEG for a few months at least for insurance. Any thoughts? Thanks, Darren

PEG time
Hi Darren,

Tx for your post and information. Re the PEG, I was in pretty bad shape going through and was 100% dependant for several weeks. I had mine out about 9 weeks post end of treatment.

I started wiht rice gruel (Congee) and also put a Vege Based Nutrition shake through my PEG and added some probiotic powder, L Glutamine pdr and Super Green Powder (PhytoNutrients). I mixed mine with Organic Rice milk. I think getting the right nutrition in will assist with your recovery.

I hope they sort out the leak. I had the regualr PEG and it worked well. Was very glad to get rid of it though. I continue to take 1 of the Nutrition Shakes per day but now pour on my cereal.

PM if you need more info. You will be back in action soon but go slow with work till you are up to it. Don't over do it. I was of work for 6-7 months post treatment.

Scam