checking in - 14 rads done so far

Hello:

I am now 18 treatments down with 15 to go. I am so tired, somewhat depressed but the worst of it is the discomfort in my toothless, new upper jaw under flap horror of a mouth.  Surgery was eight weeks ago. Have an unclosed opening on my leg from the removal of fibular to make new jaw. Still walking with a cane due to this unhealed, often painful wound.  All eating is very painful. With pain, I am doing homemade soup. I cheat with a bite here and there with other things, but then I pay the consequence of the pain and the distress.  Sleeping is not all that great either. My entire left side of my face from the scalp through the upper chest is numb, tingling, somewhat painful. Upper chest distress is due to the 33 lymph nodes taken from my neck. My hearing and my eyesight have been effected first by the surgery and now exaserbated by the RT. Each day I pray for the end of this-as well as wondering how long after the RT is over will I feel human again. If ever. I was told they might start with inplants early next year. Bummer. I am so hungry in so many ways.  When will this horror be over. Magic mouthwash does not really work--it does "numb" the mouth cavity from the swishing. I, too, take an anti-anxiety Xanax each morning before I go for the RT. I did take some codeine for the pain, but it wreaked havoc with my gastro system. Now limiting pain killers to Tylenol and Tylenol PM. Back to the RT-----the mouthguard (gag) with the face mask are straight out of a horror movie.  Thanks for letting me vent.

phyl759 said:

RADIATION tREATMENTS AND THEIR NEGATIVE EFFECTS

Hello:

 

I am now 18 treatments down with 15 to go. I am so tired, somewhat depressed but the worst of it is the discomfort in my toothless, new upper jaw under flap horror of a mouth.  Surgery was eight weeks ago. Have an unclosed opening on my leg from the removal of fibular to make new jaw. Still walking with a cane due to this unhealed, often painful wound.  All eating is very painful. With pain, I am doing homemade soup. I cheat with a bite here and there with other things, but then I pay the consequence of the pain and the distress.  Sleeping is not all that great either. My entire left side of my face from the scalp through the upper chest is numb, tingling, somewhat painful. Upper chest distress is due to the 33 lymph nodes taken from my neck. My hearing and my eyesight have been effected first by the surgery and now exaserbated by the RT. Each day I pray for the end of this-as well as wondering how long after the RT is over will I feel human again. If ever. I was told they might start with inplants early next year. Bummer. I am so hungry in so many ways.  When will this horror be over. Magic mouthwash does not really work--it does "numb" the mouth cavity from the swishing. I, too, take an anti-anxiety Xanax each morning before I go for the RT. I did take some codeine for the pain, but it wreaked havoc with my gastro system. Now limiting pain killers to Tylenol and Tylenol PM. Back to the RT-----the mouthguard (gag) with the face mask are straight out of a horror movie.  Thanks for letting me vent.

phyl759, you have really been thru it.  i'm so sorry your jaw is causing you so much pain.  to me, the neck dissection was the worst.  it took me a long time to recover from that.  it will get better you just have to hang in there.  won't be long now and your tx will be in the single digits and then it will be a breeze.  stay strong and know its you're half way there.  you'll be ringing the bell before you know it.  praying for you.

God bless you

dj

Almost half way done.  I don't think anyone likes the treatment, just look to the goal.  I know I needed to rest quite a bit.  Eating is a challenge, I went to smoothies, soups and soft food.  You will do it.  So glad you have support.  I couldn't walk in the kitchen when anyone was cooking, the smell of food and I lost it.

debbiejeanne said:

phyl759, you have really been

phyl759, you have really been thru it.  i'm so sorry your jaw is causing you so much pain.  to me, the neck dissection was the worst.  it took me a long time to recover from that.  it will get better you just have to hang in there.  won't be long now and your tx will be in the single digits and then it will be a breeze.  stay strong and know its you're half way there.  you'll be ringing the bell before you know it.  praying for you.

God bless you

dj

P759,

Welcome to the H&N forum, so sorry what you have been going through, but it sounds like you are managing and that is what counts.

Keep hanging in there!

Matt

CivilMatt said:

half way

Goyca,

Sorry about the nausea, they make a lot of meds for it.

You must stay hydrated and it is good to keep swallowing, even a little.  You will feel lousy if you get dehydrated.

If you can’t eat, then drink your meals.  Your body burns up a lot of calories fighting cancer.

Try to work with your body and if you find what works, great.

Good luck,

Matt

I had jaw replaced w/fibula 01/2012 and original rads/Cisplatin 05/2012. What I recall most of rads/chemo was the halfway point. I had a g-tube but still lost 65 pounds. I probably slept atleast 20 hours a day, and I mean I slept soundly. I had to force myself to get up for tx, feedings and a short daily walk. Thank goodness for the pain meds, xanax and the fact that I only needed to travel 5 minutes to tx. After midpoint, things seemed to slowly get better. Post tx, I saw steady improvement. By week 5 post tx I felt like I turned a big corner and week 6 post tx had more energy than I hd before the whole nightmare started. 

Guess what I am saying is that with the right combo of drugs, I slept thru the worst of it.    

It's not easy but you can do it.  Be persistant til you get the right drug combo for you.