Hi Connie!

I had really hop[ed by now your husband would have made significant progress in his recovery. Like everything it all goes back to the "everybodys different" saying.

At 2 months post rads, most OC patients are able to start tasting some things again. It may be only the first bite or 2 or 3 that tastes like the patient thinks it should but then the taste gradually goes back to the burnt cardboard. Its not easy to understand whats going on with your husband and his ability to eat. Patients who use feeding tubes usually have a more difficult time returning to regular eating. I know he has had many struggles with his intake and lack of following directions. At his doctors appointment, ask the doc about a barium swallow test. That test will determine if he has the capability to safely swallow or if he's aspirating things he easts and drinks.

Many patients at 2 months post rads are beginning to return to their pre-cancer lifestyle. Some are returning to work ... but, so much depends on the career and how strenuous and stressful the job is. I was very fortunate to be able to return to work part time for a while before I needed to go back to the full time job. Being only pt, I was put on clerical duties which was much easier than my usual high pressure job. At 2 months post rads, your husband should be able to be more active and you should see marked improvements in his energy levels and stamina. He should be able to walk around the block, drive himself to appointments, take care of all of his daily grooming needs, go to the store to pick up prescriptions, etc.

A complete recovery takes 2 full years! I know it seems like a long time for a complete recovery but after about the first 6-8 months most patients are pretty much back to as close as they will get to their former pre-cancer lives. Remember, for every week of rads, its a month of recovery and rads is still working almost as much as when your husband first finished his treatments. Im sure you are able to notice some dramatic improvements in your husband but other areas he doesnt seem much better than the day he finished rads. This is all "normal" for a recovering patient.

Most OC survivors/patients get frustrated and become impatient in how their recovery is going. Nobody ever gets better as quickly as they think they should. Post rad patients can and do get annoyed at how long it takes to get better, especially when their improvements arent plainly seen. Being able to keep down a couple bites sounds like it would be a goal your husband tries for. If he has GERD that could be making a huge impact in his ability to eat just like the thick gunky mucous. Ask the doc about his GERD and how that affects your husbands recovery. After anywhere from 3-6 or 8 weeks post rads the thick ropey mucous that hits almost every OC patients after rads should just disappear one day and it will be replaced with the driest mouth he could ever imagine. Dry mouth plays a big part in a patients ability to swallow. Since you mentioned your husband still has the thick mucous, it really should be any day it disappears and the dry mouth phase begins. The dry mouth phase can stick around seemingly forever but its really only about a year or 2. During that phase, patients will find they must carry a water bottle with them everywhere they go. Throughout the day (and night) patients will need to take small sips to help alleviate the dry mouth. You may have read bits about the "water bottle carriers club" where it really is necessary to have water handy 24/7 or the dry mouth can become very uncomfortable. Survivors/patients will experience having their mouth become so dry their tongue actually sticks to the top of their mouth, making eating, drinking or even talking impossible. Luckily for most this is temporary and will gradually improve the further out from the end of rads.

Also ask about adding high protein whey powder to help speed healing. At this point your husband still must be taking in the minimum of 2500 calories and 48-64 oz of water every single day. If he is not doing the minimums he is only hurting himself and slowing his recovery down. Even 3000 or 3500 calories shouldnt be too much after what your husband has been thru. His body is burning up calories at an incredible rate just like when he was going thru rads so he MUST push himself to take in as many calories as possible. The increased calories should be a daily routine right up until at the very least he hits his first year post rads. If your husband is losing weight, thats a sign he isnt taking in enough calories and this must be changed or he will continue to make very slow to no real progress in his recovery. Its all about what he takes in and after all the issues he's had with his intake Im not surprised he isnt making progress as quickly as those similar patients who pushed themselves with their intake. I was horrible with my intake and it landed me in the hospital several times for malnutrition and dehydration. I was so worn out from improper intake that I could barely walk but around the 2 month post rads point I was still able to return PT to my former office job plus driving 45 minutes each way of the commute. I also would stop on my way home almost every day for a never ending bowl of won-ton soup which I greatly enjoyed as one of my first post rads meals. Not many calories but all that hot broth on chilly fall days felt good in my empty stomach. These things could be what is bothering your husband and keeping him in bed 24/7. Exhaustion happens quicker in patients who are dehydrated and malnourished all from not taking enough in. Seeing weight loss is what really sends up a red flag. That is a sure sign your husband is again doing things his own way which is making him suffer far more than he normally should be. Everything is an option, every single thing!!!! When your husband is doing things against what his doctor and nurses (and you) advise he is setting himself up for failure and continued suffering. Im sure your husband would love to go back to his regular lifestyle and job. Its completely up to him on how quickly this can happen.

Hope this helps!!! Good luck tomorrow with the check up, hopefully the doc has some good news and ideas about helping with your husbands recovery. Keep us posted!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile