Post surgery recovery difficult

Mainestateofmind

My husband is one-week post surgery; robotic removal of tumor from BOT; neck dissections of lymph nodes bilaterally.  His cancer was squamous cell HPV.  We're waiting on pathology report, but the surgeon said that the tumor was more involved than initially expected and that the lymph nodes were entangled in veins, nerves.  So more than likely chemo and radiation.

This has been a huge blow to us; he has already survived breast cancer and melanoma, and is being treated for CLL with Ibrutinib.

He absolutely trusts his medical team and we are at a top facility.  We will have to relocate temporarily to continue his treatment.  Another stress to add on.  

At this point, we're trying to get him swallowing enough nutrition to get him off the NG tube before D/C.  He is in a lot of pain (tongue/throat and an enormous headache) and I can't even think what radiation will be like.  The MD is very encouraging and supportive.  But the degree of recovery from just the surgery has taken more than expected.

I've been reading threads and many of them are older; I'll have to start looking for recent ones.  To tell you the truth, I'm so terrified.  This is more than overwhelming. I don't know specifics yet, but at least I have some questions to ask thanks to this site.

BeagleDad

Please look for some of mine - Beagledad

I COMPLETELY understand.  Mine was HPV+ Tonsil.  Had surgery in November.  I remember that first week, especially.  Week 2 was better but not much.  I was devastated when I learned I was gonna have to keep that damned NG tube for 3 weeks.  FINALLY got it replaced with a Gtube (gastric).  Here is a tip.... fill a small bowl with some water and have Qtips around.  I used the qtips to "wipe" my nose and then, when needed at night, to moisten it.  Also my wife got me a small cool air vaproizer at Walgreen's .... kept it on high each night.  My doc had given me liquid hydrocodone 5ml every 4 hours.  But it ran out in 4 days.  If I had it to do over again I would have bugged him for a refill .... that liquid HC kept me from screaming all the time!  
It DID get better in Week 2 ... and actually got better fairly quickly after it started.  

I also had chemo/rads .... started them in January.  Am just now beginniing Week 3 of recovery.  I urge you to look up my posts...I ihave been brutally honest when making statements, quite descriptive when creating narratvies, and truly curious when asking from others.  

I believe this sit offers a chance to communicate directly, but they wont let me put up my email address here in the threads...feel free to message me directly if you want.  I will respond.  Now that I have gone through that all I yearn to help others like your husband.  

Note one thing as I have stated in my post "A Progress Report from Beagledad" (Fairly recent) --- everyone is different ..no mater how closely our cancers and treatments resemble one another .... my hope is that your husband will feel better soon and your stresses will abate.

Stay strong..both of you.  We are all here for you.

Don (Beagledad)

Mainestateofmind

2 weeks post surgery

Thanks for the support and sharing of your experience.  The second week post surgery is over and there is improvement.  Still pain meds every 3 hours, but now crushed in pudding; pain rated 5-6 instead of 8.  He has been using a saline nasal spray for the dryness. Discussed vaporizer, but he's thinking it would increase his night sweats.  Follow up with oncology team this week and the plan for treatment. At 71, and with this 4th cancer diagnosis, it's hard for my husband to even think about more treatment.  We are hanging in there and trying to celebrate each recovery milestone.

motorcycleguy

Mainestateofmind said:

2 weeks post surgery

Thanks for the support and sharing of your experience.  The second week post surgery is over and there is improvement.  Still pain meds every 3 hours, but now crushed in pudding; pain rated 5-6 instead of 8.  He has been using a saline nasal spray for the dryness. Discussed vaporizer, but he's thinking it would increase his night sweats.  Follow up with oncology team this week and the plan for treatment. At 71, and with this 4th cancer diagnosis, it's hard for my husband to even think about more treatment.  We are hanging in there and trying to celebrate each recovery milestone.

Maine,

Well, I cerainly sense that your husband is a hardy individual, if he's handled the previous treatments.

With all Head and Neck patients, I always advise EAT EAT EAT - all of his favorites, and as much as he can handle ... before he starts treatment.

He may lose sense of taste and swallowing capacity for a little while, and a few extra pounds going in will help him.

I definitely don't envy you, being at the beginning of this process - but the people on CSN are proof that survivors are here, and ready to give you all the help and advisement we are capable of.

I wish you the best possible outcome!

mg

Mainestateofmind

motorcycleguy said:

Maine,

Well, I cerainly sense that your husband is a hardy individual, if he's handled the previous treatments.

With all Head and Neck patients, I always advise EAT EAT EAT - all of his favorites, and as much as he can handle ... before he starts treatment.

He may lose sense of taste and swallowing capacity for a little while, and a few extra pounds going in will help him.

I definitely don't envy you, being at the beginning of this process - but the people on CSN are proof that survivors are here, and ready to give you all the help and advisement we are capable of.

I wish you the best possible outcome!

mg

Thanks.  I actually quoted

Thanks.  I actually quoted you "Eat..." because since the operation, it's been hard.  He's drinking a nutritional beverage: Orgain, but the MDs want him to eat more textures and return to "real" food before the next step in treatment. Which will be radiation and possibly chemo, if he decides for both.

Last night he had stew and cheesecake!

 

JennaM

Constant Thrush infections due to lack of saliva

Almost 4 years post-radiation, I don’t have a cancer, but the quality of life gone.

Please let me know if anybody experienced complete loss of saliva. It has been almost four years and nothing changed. My mouth is so dry and sore, I don't sleep and if I do I have to have chewing gum in my mouth. Freakishly scary!!!

I tried all the known to doctors remedies, but with no help; mostly unpleasant feeling and stress that it didn't work again!

Horrible reaction to the drugs that supposed to help me produce saliva.

Anything would be greatly appreciated.  Oh, salt and baking soda do nothing for me!!!

 

Jenna.

 

wbcgaruss

JennaM said:

Constant Thrush infections due to lack of saliva

Almost 4 years post-radiation, I don’t have a cancer, but the quality of life gone.

Please let me know if anybody experienced complete loss of saliva. It has been almost four years and nothing changed. My mouth is so dry and sore, I don't sleep and if I do I have to have chewing gum in my mouth. Freakishly scary!!!

I tried all the known to doctors remedies, but with no help; mostly unpleasant feeling and stress that it didn't work again!

Horrible reaction to the drugs that supposed to help me produce saliva.

Anything would be greatly appreciated.  Oh, salt and baking soda do nothing for me!!!

 

Jenna.

 

Jenna Your Situation

Is unusual in the fact that you have no saliva and have gotten none back at all. Usually, we get a small amount but in your case no. I am sorry you have to deal with this as it must be really frustrating besides the serious quality of life issues such as constant thrush and certainly dental issues. I don't share your situation as I have some saliva but if I sleep with my mouth open a bit at night for some reason I wake up with a desert mouth because the flows not there. Any breathing through my mouth, or a visit to the dentist and they are using the suction in my mouth dries it out quickly. You have tried many things so the only thing I can add is to try Xylimelts tablets and see if they help. Put one or two between your cheek and gum and they adhere to your tooth or gum so they are safe to use overnight and sleep with as you won't swallow them. Also, you may want to try Act Dry mouth Mouthwash as it may give you some relief. And also you may want to give acupuncture a try if you haven't already. It's not guaranteed to help but some get relief from it and others don't you just have to give it a try. Wishing You The Best-Take Care-God Bless-Russ