My brother just finished treatment

It's tough, and I feel for him and your Sister-in-Law. I've been done for a year, and other than some numbness in my hands and feet (neuropathy), I feel pretty good again.

It's normal for someone who just finished up, to want to get back to being "themself" again - and the good news is that it just takes time.

Tell him to hang in there, and he'll start feeling a little better in just a few weeks!

Good luck to all of you; I wish you the best possible result!

mg

Appreciate so much the shared experiences here - shows the variety of response in the human body.  My husband just completed 7x5 radiation with weekly chemo on Monday (HPV SCC base of tongue).  This is definitely the worst of it for him.  Pain and tons of that ropey phlegm.  Pain patch not really doing the trick and all meds must be crushed and taken with jello and much salt/soda gargling.  Smoothies that work one day are too painful the next but having trouble telling which ingredients to include/avoid.  Doc keeps suggesting prune juice for constipation but that hurts way too much.  Have been trying to avoid dairy but reliant on VHC Boost.  Any other high calorie non-dairy suggestions that won't be painful?

Putting one foot in front of the other everyday . . .  Y'all are so encouraging!

wbcgaruss said:

Your Reality

Brings back memories for me as I went through similar recovery and as you say the worst of times as you feel so lousy, washed out, no energy, sleeping a lot. The whole day you spend just getting through by trying to get enough calories in as your body needs plenty to help you heal and taking meds and rinsing and spitting and dealing with some other things that occasionally pop up. My pain was no problem but for others, it is a challenge. If he only has the patch get with your cancer team and get more pain meds or stronger pain meds. Or if you have a nurse navigator as I had, go to them they are your go-to person to get stuff done for you they will help you get the meds you need. I had a morphine pill that was time release and I would take one every 12 hours and they worked great but they cannot be ground up and when I could not swallow anymore everything had to go in the feeding tube so the gave me liquid hydrocodone. So whatever pain meds you can get in your docs should be able to help you with a liquid version possibly. Does he have a feeding tube? I know there are over the counter meds you can grind or something like liquid aspirin is available but probably not strong enough to help right now. The main thing I was told about pain and have read it on here is "Stay ahead of your pain take your pain meds on a regular schedule don't wait till you have too much pain then take meds for it". Ahhhhh yes, I remember the ropey phlegm hard to deal with but just keep up what you are doing salt/soda gargling as often as necessary to again stay ahead of it and keep it cleared out do it every 15 minutes, half-hour or whatever necessary. I rinsed as often as necessary mixing at least a quart at a time maybe more so I wouldn't have to be bothered with it as much and could concentrate on recovery. I stayed ahead of it and did pretty well but I had a couple of times at night when I woke up gagging and it had cut my air off and I had a time getting it cleared out and breathing again, that's the only time it really got the better of me. I was also sleeping in a recliner which makes it easier to deal with. Most people I have heard comment on here about sleeping had switched to a recliner or comfy chair at some point during recovery. You may not be able to avoid dairy completely or boost as you have to do what you have to do to get through this recovery period just concentrate on getting enough calories in. Again check with your med team or nurse navigator for something to alleviate constipation or go to the drug store and try some different OTC stuff that he can get in. I am wishing you the best and you are in my prayers. This recovery is a slow process and is measured in weeks and months not days and weeks but as you go the days and weeks will pass and you will be through this as many of us have made it. I am pretty sure it was on here I read one time someone said they go day by day, hour by hour, minute by minute and sometimes second by second if need be. Also, the saying on here is NEGU (Never Ever Give Up). Please also if you haven't already check out the Superthread at the top of our H & N page it is a wealth of info. So Take Care-God Bless-stay strong and NEGU.

Below is a recipe for calories I found on the net some time ago for cancer patients and I have never tried it but check it out and see what you think it is said to be a mixer only recipe you don't need a blender. I know this is long but I hope you can find something that helps.

 

 

Deb,

So sorry I’ve taken so long to get that recipe for your dad! I checked with our nurses and here it is:

1 box (3.4oz) of instant pudding
3/4 cup half & half cream
1/2 cup of water
1 cup of carnation evaporated milk (use canned not powdered etc.)

Mix together in a bowl then mix with a mixer for one minute until it begins to thicken. This recipe makes 4 servings. We use it to help individuals we serve who are under weight to assist in gaining weight. As you can see…it is very rich and full of calories, etc. Let us know how your dad is doing!

Karen

 

Your experience does sound familiar.  He doesn't have a feeding tube and we are limited on some pain meds because he got a blood clot with the first PICC line.  They've said he can double up on the patch and we keep up with the tylenol/cod that can be crushed.  Its enough for sleeping, etc but not enough to be able to eat without serious burning sensation.  He has been sleeping upright on the couch for a few weeks now and that does help.  We've got crushable Colace and Milk of Mag that were doing the trick for constipation until an increase in gabapentin and the second patch, but hopefully we won't need that too much longer.

Thank you for your encouragement and mostly for your prayers.  That is what is getting us through.

I agree with you, Nancy, about the progress being gradual, initially post-tx, especially for the first year. Logging it is a good idea.

However, for those without Caregivers...I only had co-workers who drove me to and from Rads for 4 of the 7 weeks. The Jevity only had to be delivered once. I used the experience like a Boxer in the ring, and it helped me to be strong/man-up. And, my tx was harsh- on Morphine at the start of week #2 and spent 4 nights in the Hospital at start of week #6. Concurrent C & R, I didn't have the third Chemo option- they flooded my system with Cisplatin & 5-FU with limit in 2 episodes of carrying 2 pumps in weeks 1 and 4. So, for those without Caregivers- you can handle it with the Meds the Dr.s give. By the way- I hated Morph and only used 4 of 5 consecutive weeks. Hydrocodone was enough.

Tell your Brother the worst is over, Linda. His next scan, basically, is just to establish a baseline for Radiologists to compare future tests to. Something shows in a lot of 3-month scans, but are typically false-Positives. Something showed on mine but my ENT said it didn't bother him. That was over 11 years ago. Just let him know the recovery does take time.