I just finished treatment

Hi Tim - it's good to hear from you...glad you found this spot for good info and friends.  My husband finished 33 radiations and 5 rounds chemo this week, and you seem to be on the same track recovery-wise.  He's lost around 35 pounds since October.   Swallowing was good up until this week, when mucous set in with a vengeance.  The liquid supplements he'd been using since week #3 no longer work... they combine with the mucous into "concrete".  He's resorted to the feeding PEG, which he'd hoped to avoid.  His energy is sapped, but somewhat better now that chemo is done.   We're thinking of you and wishing the best.   Try to divert your mind from future tests.  This site has helped me to focus on "not going  there until I get there," and that what you two  guys are going throuogh now is par for the course.   

oceangoer said:

Thank you for your reply

I am also living off of the feeding tube as I can't hardly swallow but the muccaus is by far the worst of the side effects. That and thee fact that every other dammed commercial is about steak or a burger lol. I can't sleep at night because the muccaus blocks my airway. The only thing that I've found to help is the liquid oxicodine (spelling?) that stops it for a while so I can sleep. The best to you both this isn't an easy road is it.

 

Smile

Tim

I had to rely solely on my feeding tube for 10 weeks after treatment. My  advise you , to stay on top of your hydration! I ended up hospitalized twice. Once I got my hydration/nutrition schedule worked out, the healing process moved along quickly. There have been some bumps in the road, as most anyone here can attest to, but a positive attitude and an extra glass of water go along way.

My husband cooked himself three full meals a day. I think the smell of everything delicious helped me fight for wanting to eat, so go ahead, watch all those steak and burger ads, I do believe they help. . Have to admit though... I did enjoy the reprieve of not having to decide "what's for dinner"  lol  

Tim did you do throat excersizes during your treatments? My speech therapist told me you have to do practice swallowing no matter how much it hurts. Also even sipping little amounts of water will go a long way in the later weeks. I drink maybe less than a glass of water a day because I'm having nausea problems. But i'm going to fight and at least try to sip water several times a day. Throat excersizes hard for me cause therapist wants 10 3-4 times daily. Does'nt sound like a lot but excersizes are hard to do. I wish you good luck in getting your swallowing back. What did your rad n chemo doctors tell you? I will be praying for you and wish you the very best. Please post back to let us know how you are doing.

Thx Debbie10. I did some b4 treatment too bit starting tomorrow will get my trusty notebook and try to do as many as I can!! I have been reading about people post treatment that can't swallos! Scares the h*** out of me!!

Tim,

It would behoove you to open up the positive support center of your mind and get on  the Tim Life train which makes stops in:

1. I am ok

2. the treatments worked 

3. the scans will support NED

4. losing 40lbs was good for me

5. better make plans for Memorial Day with kids

6. I will try to swallow more often and sip water every day.

7. I will taste, eat, try any and everything every day (no kidding, a taste  is such a small portion)

8. Let me see, set my body clock for (painfully, depressingly, long time) slow.

9. Accept and hear what my body is saying.

10. Be happy with small improvements

     

There, I have shared my Sunday, April 15, 2018 tips.  Now take on the day.

It is raining in Oregon today.

Matt

Tim - you are far from alone       For me it's been a rare chance to rise to the occasion and show in action, not just words, how much I care.... not everyone has that chance, and it's a gift. Your wife knows what I mean.

Ocean, It sounds as like you are hitting all the great or not so great milestones. I had 37 Rads and 7 Cisplastin Tx. I am alive and feeling better every day. It took me an honest 5-6 months to start to feel like a human again. Now at about 1 1/2yrs out, I need to go on a diet. I hit the gym every day for weight training and bit of cardio. My taste changes from day to day. My salvia is starting return a little each day as well. Keep on fighting, there is a end game eventually.  It will take a few months then you can begin to find your new normal.  Good luck..

I am five weeks since my last treatment and still can't swallow. Had the swallow analysis done and, sure enough, Mine doens't work. It just pushes the liquid donwn a bit and then it squirts back into my mouth. It just can't push it all the way down. Anyone else have this?? I am getting more tests  hopefully next week. Someone mentioned balloons.

Hi Tim,

Another one who went though the same side effects...no fun. I used a Peg Tube exclusively by week 2.(33 rads and 2 of 3 megadoses of Cisplatin). My weight went from 109 to 89 lbs. I slept sitting up with a horseshoe neck pillow to stabilize my head, and a sling around my head to keep my jaw from opening and creating dry mouth. I kept a throw up bowl, clear water, baking soda water, and salt water next to me in the bedat all times, as if the phlem built up on the back of my tongue I would throw up. I remember about 3 weeks of spitting every couple minutes/24-7 and gagging the phlem out. It was definitely the worst side effect of the treatment. Sleeping was in 15-30 minute increments. I was so scared that it would never go away. My world got VERY SMALL during this period. But in time, it did SLOWLY get better. I got my Peg out 5 months after treatment ended. It was very hard to eat and took a lot of dedication and smoothies to get me back on track. I am now a year out, still NED and eating most foods again. Taste and Saliva maybe 50-60%. Im back to the gym trying to pack on muscle and back to my normal weight. I heard someone describe the healing progress as a glaciers pace...about right! Hang in there! It does get better!!!

Nancy