So Dave rang the gong today. Pretty exciting. Not sure if that is a ritual everywhere but at Sloan it marks the end of radiation.So happy
he doesn't have to lay on that table anymore!!!

I know everyone is different but can folks give me a heads up on what the next few weeks might look like(I'm guessing asking him to build an addition on the house next weekend is out...).
And any helpful hints for whatever may be coming his way so I can help him feel more comfortable.
Right now, the worse things seem to be mucous,pain and very low energy. His energy really crashed the last few days. When does that start to slowly turn generally?


It is amazing how many helpful hints he has used from this forum. In fact, we turned the dietician at Sloan on to Juven as a product after I read about it here. She wasn't familiar with it. We explained we found out about it here and it helped others as well as Dave so then she decided to also recommend to some patients there.

Susan, it will take 2 - 3 weeks before he starts to slowly feel better. Unfortunately its a very long process, 2 steps forward and 1 step back are the norm at this point. Right now Dave may sleep alot which is normal. His body needs lots of rest and keep those calories and water levels high. To heal he will need 3000+ calories per day for a long time.

After about a month post tx he should see a big difference. It will only get better and better from here on out.

Congrats on finishing treatments!!!! Let the healing begin

Susan,

I preference this with we all can react differently but for many, me included, the few weeks post Tx are our worst. I actually ended up taking a 2 day vacation in the hospital during my 2nd week post Tx. I was not drinking enough water or calories and I became so dehydrated that my wife, bless her heart, made me go, kicking and screaming (well writing very loudly on my pad) until they got my chemistry back in order. Sometime in my 3rd week post I walked out of my tunnel and it was so nice to begin to think I was going to live despite this barbaric treatment.

Good timing on the replies. Thanks.
He is sleeping so much,it started to worry me. But it sounds like that might be around for the next few weeks. I expected the pain (from the radiation still working) but thought the fatigue would improve quicker after treatment ended. No,huh? He's also on thrush meds. Does that increase fatigue as well?

The other thing that has really increased(or I should say decreased) is his voice. He is so hoarse. Is that "normal."(Honestly,I will never feel the same about that word again). How long does that one "usually" last?

I lost my voice completely for about 4 weeks. I suggest a bike horn for geting CG attention. LOL. For me, the steady decline the last two weeks of radiation were just reversed the first two weeks post radiation as I climbed back out of the dark. By the end of one month post tx my energy level was very good. Still took naps but was able to go a lot and do a lot. My respect goes out to you care givers.......you have your hands and hearts full. I love my husband so much more for his diligent, kind and loving care of me during the entire time.

Susan, Wonderful for both of you to be finished!

As Christine and David have said, calories and fluids are most important. I would add that in my husband's case his pain increased due to gagging from thick mucous buildup. Adequate pain management was essential. Sleep was his main activity for a few weeks, with one short walk (1-2 blocks) per day. He slept almost upright in a recliner.

A small tip - post tx there was a time when he wanted to rinse with the baking soda/salt solution but could not because it caused him to gag. One of the nurses suggested trying to warm up the solution slightly and that did the trick. It was a big relief to him at the time. Lottie

Re the fatigue and I'll add weakness. Being a person who was in excellent aerobic shape and perhaps not used to being sick this Tx left me physically weak as a new born kitten for months post Tx. Mentally I was very determined to return to my normal and I'm sure that helped but my body just took a long time to get it's strength back. I will also add that even though I was consuming appx 3000 cals each and every day post Tx I didn't gain a pound until my 2nd year of recovery so looking back it tells me there was a lot of "behind the scenes" activity related to recovering for my Tx.

Again, there is no specific calendar that he can compare his recovery to so it's important for him and you to understand that he will recovery when and how he will. With that said I doubt it will be quick or complete.

For me the 2-3 weeks after treatment ended were all about sleep. I walked the dog a few blocks every day (in winter) and tried to get at least two hours of work in at my home office and that was about as active as I could get. It was after about three weeks when I noticed the first positive changes (less pain, more food options). After that is was a slow climb up what felt like a very steep hill.

Looking back it was only a few months ago and the time passed quickly, but at the time, every day seamed to last an eternity.

I do think Dave will recover well enough for the two of you to enjoy this summer. He should be turning a corner here fairly soon. The changes will be very subtle at first so try and remember the patience that has gotten you this far.

Hi Susan! So glad to hear your husbands treatment is done!!! I wish you both a fast recovery. You seem to be a very strong willed CG and I know your husband will do very well in your care.

Thank you, thank you, thank you for the replies.
Had to laugh at some of them. I think Dave would get a kick out of me being called strong willed. I'm betting that when I'm waking him up to eat and it's the last thing he feels like doing strong willed isn't the word that comes to mind.LOL

As for him getting my attention with a horn(that image cracked me up) I need something to get his attention. Right now his hearing is awful(or selective...).
They think it is a function of the tubes swelling and all the mucous hanging out in there.

So, fatigue, mucous, hoarseness, pain all normal??? UGH.
If I'm getting this right, it sounds like all of a sudden bit by bit symptoms start to subside.

Kelly, it's funny you mention the dog. No matter how he is feeling and how much the rest of us are around to do stuff Dave consistently gets up to take care of the dogs.

I'm also reassured to hear that gaining weight is tough. He's getting 3000 calories through the drinks and not gaining. What is that about???

Susan,

I'm not a doc but our body is at war on many different fronts (cancer, chemo, radiation, side effects, healing, etc.) so I assume it's expending tons of extra calories attending to these in addition to normal daily requirements.

Susan,

I think my dog was the last creature on earth that was still relying on me to take care of him.

I was surprised to see that you are waking Dave to eat. That would have seriously pissed me off. My wife made sure I got my calories, but only when I was awake.

I had the same issues with the eustation tubes in the ears (they swelled). That goes away after a while but it was really annoying to have that stuffy head feeling with the ears. I was worried about flying but was able to do that about two months out.

About gaining the weight back; I am now a very sinful eater, loads of butter, high fat meats, whatever I can get to put on some pounds. I am now at the same weight as I was pre treatment. I maintained my weight through treatment but lost about 10 pounds in the three weeks after treatment ended. I have just now gained that 10 back.

My worse week was actually my last week of TX. The first week of recovery was just slightly better. After a couple weeks improvements came pretty quickly.

I also lost my voice towards the end, but I could still squeak! Within a week it returned.

Post TX, getting back to eating solid foods was my biggest struggle and it took several months before food tasted decent. For me, taste returning was a very gradual process and sometimes down right depressing.

I never seemed to need extra calories to hold my weight. About 2400 seemed to do it. But, after my PEG was removed I had problems eating and my weight dropped for a while.

It also took a few month to get over bouts with the dry mouth (particularly at night).

Susan, glad to read that Dave has finished RT. Congratulations!

Ok, now for the rest. Everyone has had excellent advice and comments and I second them. The fatigue thing is killing (er, not in the absolute sense, you understand) so don't worry about it. I was literally flat on my back all last summer after finishing RT around June 1st. No engery, nuttin'.

Like my namesake David, I'm nearing a year post-radiation and I still haven't gained any appreciable weight back. Maybe 5 of the original 30 that I lost, and that was months and months ago. My docs aren't concerned and neither am I. I'm not losing any more and that's what's key. So Dave not gaining weight yet doesn't surprise me.

Other dittos:

Hearing loss (I've had fluid in the right ear for a year and it ain't going anywhere)

Voice - I couldn't speak at all for the last few weeks of RT and a good month afterward, and my full voice didn't really return for a good 6 or 8 months.

Mucous - horrible. Tons during treatment and only a gradual lessening for many months afterward.

Pain: yep. I kept the Oxy bottle verrrry close by.

But the worst will soon be behind him, and you. You didn't mention nausea, which was my main complaint for months, so I'm assuming it isn't an issue. So glad you have dogs. They're the greatest. My dog was about the only thing that got me through serious depression a dozen years ago, and my neighbor's two dogs have been great companions for me this time.

Keep us posted.

Courage!
D2

I also lost my voice for some short period of time. To this day my wife still says those were her best days of our marriage. B*!^h.

The MD seems to share the attitude here about weight so between here and her I'm mellowing out about it.

I confess I was waking him up this weekend. He slept so much this weekend(he's usually pretty good about his own schedule). I bet he was calling me every name in the book but with no voice he had to do it all in his head(a new form of marriage counseling. LOL).

He ended up with a fever this weekend(which explains the sleeping) and we ended up in the ER. What an experience. It wasn't connected to Sloan and was another advertisement for making sure you go a CCC when possible. They knew squat about CA. They put him down as being there for a sore throat because he was hoarse. Plus they were much more concerned with the person who was shot in the butt. They put the hospital on lock down in case it was gang related. It wasn't the least bit helpful medically but it wasn't boring.

Anyway, thankfully we saw his MD today. He is on antibiotic as a precaution(she thinks it's viral)and no more fever. Phew.
But tomorrow he goes for a transfusion because his hemoglobin is low.
Haven't heard that mentioned here. Anyone else experience that? She said it will help his energy and the healing.
And with all that she is very pleased with his progress. Go figure.
But I do see some improvement in the last two days myself.
He hasn't had any queasy or stomach issues throughout this. Hold on, I have to go frantically knock wood...
Pain is there but better. little by little...all in the right direction...

David, that earns a badda-bing!