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Good days and Bad days

chantil
Posts: 13
Joined: May 2010

Could anyone comment on recovery? My husband is 25 days since his last radiation treatment. He is still unable to taste anything and is still on the PEG. He was back in the hospital a week ago for fluids and antibiotics. His fatigue is almost debilitaing and unbearable, he has nausea, he still has large amounts of mucous. He felt better yesterday but today is not good. He feels day by day he moves one step forward and two steps backwards. 3600 grays total treatment (both sides of the neck irradiated) along with 5 Erbitux. The radiation burns are healed externally but still some healing on the inside.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Chantil, sorry that your husband has had to endure this road. It certainly is not an easy road at times. Recovery is such an individual thing that sometimes it is hard to say what is 'normal'. Twenty five days out of treatment is not much. And I was very bad at that point. What many people do not realize is that the side effects from the radiation are cumulative and they peak a couple weeks after treatment. I was in a lot of pain, terrible mucous and out of it. I had very severe side effects from the rads. My mouth was a wreck. Thank goodness I had a peg. I could not eat or drink anything for five months. I still have a peg and I have been out of treatment 16 months. The rads damaged my esophogus so I am having problems swallowing due to a stricture. Have been stretched out twice.

Fatigue is very common. I still suffer from it daily. I am only 94lbs and tire very easily. Yes, it is a one step forward two steps back kind of recovery but he should get better with time. Try not to measure recovery in days. Rather, weeks. For me, months. Mucous can stay for four -five months. Taste can come back in about the same time. I am still waiting for that too.

I am amazed and happy for those who can work through treatment and bounce back quickly. I am glad that your husband has you. I went thru treatment alone and it was hard. I had a modfied radical neck dissection, 23 lymphnodes removed, 3 were cancerous, plus they took my left salivary gland. The other was fried from the rads so I still have extreme dry mouth. I had 6000 CGY, 30 radiation treatments. They wanted to give me Erbitux as well, but I refused. After my rads I also had severe nausea and could not hold down any nutrition. I went from 130lbs to 87 lbs. I ended up getting a pump for my peg and putting in my nutren very slowly helped. I was able to keep it down.

I wish you both well. Hang in there. It may be slow, but he should recover and get to what we call, 'the new normal' around here. Best of luck to you both

chantil
Posts: 13
Joined: May 2010

We just had a good cry after reading your response. We are ready to forge ahead and beat this thing. We did wonder how long are the pain meds necessary. he is on 50 mcg patch Fenadyl and Lortab. He would like to start tapering off. He also is making exercise a top priority - because we realize the paradox that you need exercise even if you are too weak to do it!

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Sorry he's going through this, but in reality, he's right on track with his recovery. The main thing is not to get discouraged or depressed. It's just part of the road to recovery, it takes a few weeks after the rads are finished to actually stop cooking for lack of better words.

Mainly stay focused on hydration and whatever he can take in for calories and nutrition. Water, Boost, Ensure, whatever foods you can get in him. He needs to take in nutrition to help with the fatigue along with rest and fluids.

We've all went through it, so can he, he's made it this far. He just needs to keep up the fight a little longer and it'll start getting better slowly...it's definitely not a progression that improves daily, more like weeks and months.

Best,
John

RushFan's picture
RushFan
Posts: 217
Joined: Aug 2010

So sorry you and your husband are traveling down this road, it's a rocky one sometimes.

Three weeks post treatments and I was a mess, basically drank Ensure and slept. Very little talking, watched t.v. and that's about it. Probably slept 18-20 hours per day. When I woke up...which was about every two hours around the clock...I tried to drink an Ensure or Boost.

It will get better, improvement is slow but sure.

I'm with John, it's weekly progress, not day by day. I'm almost 14 weeks post treatment now and am eating 95% of my calories, back at work and trying to build my energy. I know I'm fortunate to be where I am.

All the best,
Chuck.

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

CHantil
I had severe mucous for about 5 weeks after treatment and then one day it was gone! It seemed like a miracle at the time. THen came the dry mouth which is not as bad as the mucous but has it's own issues. That is the main reason I cannot eat much and I am 16 weeks out of treatment. I did eat clam chowder yesterday, oatmeal and yogurt today along with a couple eggs, but I still need the PEG to get the 2000 plus calories I need to hold my weight up. I have found that getting the cancer out was the most important thing. I can live with less food, poor tastes, and even a PEG for a long time, because I get to see my daughter, wife, friends and enjoy this great life. The new normal is something to accept and yes you can cry once in a while, but remember it is still a life worth living and try to enjoy the ride.
Hang in there and keep posting here, we'll help you through this...it just takes time !!!
Measure your improvement as you've been told here, by weeks & months, not days. If you measure things by days, you'll get frustrated. We're here for you, remember that...
All the best,
Steve

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Chantil,
I too am very sorry to hear how hard it is for your husband 25 days out. I post about my partner, Mark, who is recovering rather well. But what I want to remind people is that Mark had extensive surgery up front. He had his tonsil, surrounding area, part of his tongue and soft pallet removed. He had a radical neck dissection where they removed all of his lymph nodes and part of his neck muscle.
The extensive surgery allowed for a less severe radiation treatment. Just the other day he wondered if he should have done the surgery because of all the side effects that he has from that. A lot of his pain still comes from the surgery done in May. He is also very stiff and his range of movement is low. He too describes the step forward step back experience.
I agree with those who have posted above...your husband is not outside what is normal. We were told to not make a judgement about recovery until the 1 year point.
Hang in there...I know it is difficult for both of you, and you as caregiver, may be facing the feeling of helplessness in making things go better or faster. I know it is something I face all of the time.
My best to you and your husband,
Kim

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