Hello.
Thought I could do the care giving to my husband all alone but realize now that I also need some support. We are so stressed. My husband had surgery 2 weeks back. Total glossectomy. We've been home the last 2 days. Is the lethargy normal still at this point? Was I too optimistic thinking that his energy levels would be higher by now. The sluggishness scares me. Also, do the secretions stop any time soon? He's wearing a trache still and also a g tube.
So sorry for the rushed post but I have little kids and so little time. I really would love some support.

Thanks

Welcome to OCF! Im so sorry you are overwhelmed by being a caregiver. Having young children you really do have your hands very full. Do you have any relatives or friends nearby who can give you a hand. You are in the right place for support. Caregiving is a very difficult task, juggling so many things at once while trying to keep a smile on your face for the patients well being is hard.

There are all kinds of little things that would be a huge help to you right now. Just taking the children out for to lunch or to the movies would give you a much deserved break. How about getting a visiting nurse or home care service to help out? Many insurance companies here in the US cover their costs. Think of anyone who asked you if you needed anything.... take them up on it. Now is not the time to be proud, even someone bringing over a covered dish dinner would help. At my former employer we would take a calendar and all select a day where we would make a home cooked meal for my friend's family while she was going thru her cancer treatments, plus we always included something for the next mornings breakfast. If your friends would do something like that it would take a huge load off your shoulders.

Drainage is normal. What isnt normal is if it would change color or all of a sudden it would have a very foul odor, so try to watch for any changes. Your husband has been thru a huge surgery and yes it can take weeks, before he perks back up. If he is on pain meds that will further push him towards being sluggish.

You now have a whole set of new BFF's that are in yoru corner to help. Best wishes!

Hi Nina: This is about the best place on the planet for what you seek. It is one huge family, many thousand strong who actually know what you are going through and who are more than willing to share what they have learned to help you get through this more easily. It will be a tough road to drive, and it will have potholes along the way. But, having others point them out ahead of time will help you avoid a lot of flat tires along the way.

Get yourself a spiral notebook to write down the hundreds of questions you are going to think of. Make a list of questions for the doctors, the nurses, the forum members, etc, etc.

There are hundreds of pages of information here both on the forum and on the website to help you educate yourself about all your husband is going through. Better education on your part makes you a better advocate on his part. It will make you take a no nonsense assertive stance with the medical team. If you don't understand what they are saying it will make you keep asking, over and over if necessary until they answer you and you understand. You will learn that assertiveness here, just like all the rest of us did. It really does give you better results and will make your husbands journey more comfortable.

So, get started reading. When you get stumped ... ask. When you just need someone to help keep YOU strong, here is the place to come.

You can do this Nina, and so can your husband.

Welcome to the family.

Tony

Thanks Christine for the welcome. Thank u for ur kind words. I do have family and friends that help out where they can but for some reason I still feel very alone and scared. Perhaps reading here and being with people who are going through the same thing will help me. Just reading here already I've seen two members who were treated by the same dr as my husband.

Thanks tony for the warm welcome. I will surely keep reading through the posts here and learn as much as I can about what journey we are about to go through. I've read that it will be long, but I pray it will be smooth.

Hi Nina, my husband also had a total Glossectomy ( plus other surgery ).
Kris spent 4 weeks in the hospital so I'm kinda surprised that yours is home already. Kris was pretty drained for a good 6-8 weeks after coming home. It takes time to recover, but you should see improvements week by week. Actually it took Kris more than a year to get back to near normal.
Does your husband have a permanent trachy? Kris also has a trachy, his is permanent as he also had a laryngectomy. Kris did have a lot of tracheal secretions and we managed these by investing in a nebuliser. He initially nebulised saline at least 4 times a day. This helps to loosen the mucous so that it can easily be coughed up. The oral secretions Kris managed with frequent mouth washes and cleaning with the green " sponge on sticks". Of course having no functioning tongue makes it impossible to swallow secretions in the mouth. Kris just wipes it out with a handkerchief or tissue
. You may find that your house is quite dry, it being winter where you are, and you may need a humidifier to add moisture to the air. A dry atmosphere will dry out secretions and make them hard to cough out.
Like Christine, I hope you have some family nearby who can help you, especially with the children. Or even just to be with your husband while you and the kids get out.
It will get better Nina.
Tammy

Hi Tammy
My husband is only 39. Perhaps he healed quicker so they sent him home sooner? But I'm glad to know that it's normal that it would take a little longer to feel more active. My husband has a trache that they sent him home with but they anticipate that they will remove it before radiation. G tube will be there for a while I guess.
How is the function of your husbands tongue now in terms of speech and swallow? It's been a year I believe since his glossectomy?

I was in for 10 days. Usually the minimal here in TO is 10 minimum - 14 maximum The big thing is eating - that's what usually delays going home. If he's on a Tube they may send him home earlier if everything else is okay.
Hopefully - they have home care coming in. The drool will go on while he's healing, rinsing and spitting if he can will help. I slept with a facecloth on my pillow.

Hugs he'll perk up and then get conked on the head by rads - it's a roller coaster..