Hi! My name is Brenda and I am caretaker to my husband, Tom. We have both been checking this awesome community out. It has taken me a while (and a sleepless night) to decide to post.

Since we have 3 doctor appointments today, I will give you a quick run-down then a more detailed story later.

Tom is 42, a very light drinker and occasionally smoked a pipe for 10 years (quit 10 years ago). He was diagnosed with SSC in September of this year. He is currently beginning his 3rd week of chemo and radiation.

The cancer was found in a 4cm mass in his lymph node. Primary was found less than 2 weeks later in his tonsil. ENT has been terrific!

Tom is a successful Psychologist working at Midwestern University. He loves his job and this treatment is devastating him. He has little energy, less appetite and nausea most days.

Up until this point in his life, he had never been in a hospital bed. He was relatively healthy with only moderate high blood pressure for a complaint.

Prior to starting radiation, he had to have 2 wisdom teeth removed. This seems to be the source of our angst right now, but it could be the mouth sores from radiation. He has had 3 sleepless nights, pain in his cheek area with some swelling. The area is so close to his extraction site, but this is also less than 3 inches from where the primary was found...

I made him a "Miracle Mouthwash" batch out of what I had laying around the house last night: anbesol gel, mylanta and benedryll. It helps for about an hour then wears off.

So this is me... I am a mom to 3 kids ages, 18, 15 and 3. The 3yo is adopted. We adopted her 2 years ago as she is a second cousin and had no other family member able to take her. :o)

I am a certified English teacher and resigned last year to open my own online high school (in progress). I have a BA in Psychology and a MA in Secondary Education. I am a home-body and enjoy the Facebook games and making crafts/sewing.

Having not slept last night, I will still be accompanying Tom to work. I have been driving him, staying in an empty office across the office and making sure he is eating and drinking.

I will be sure to post again soon. I had to get a month to month broadband for my computer while I am with him at work. They do not allow faculty wireless access. :o(

Until next time!

*taking a bow*

Hi Brenda, and welcome to our family.You sound to have a brilliant organised and upbeat attitude to your role as caregiver,and that will surely help in the weeks to come.
Radiation sores can be really bad inside the mouth especially if accompanied by thrush which will show as a white film.A good easy treatment for the sores is salt and soda water mouth washes which you can make up yourself,also plain carbonated water swushed round as often as you like will cut down the radiation gunk.
Good luck to you both and enjoy the friends you will make here.

Has his cancer slides been tested for HPV?

Check out my Signature Line and have you and/or your husband call me. PM me for my telephone numbers if you want.

Brenda,

Welcome to a great place that you really would rather not be at! Yikes...you need to edit that sentence.

It sounds as though Tom needs more/better pain meds and you did not mention that he is on any type of narcotics. If he is having pain that interrupts sleep, please advise your physician(s)and have them prescribe. Most pts undergoing this treatment eventually need fairly heavy duty meds, for instance, liquid morphine or fentanyl patches. All this comes with a price though..possible nausea or constipation which can be helped with other medications. I don't recommend this lightly but it sounds as though he has reached a point that he needs help, particularly to sleep.

Wishing you strength during this journey..we have been there and it's no cakewalk.

Deb

Welcome to OCF. Your husband is very lucky to have you by his side. Glad you have found OCF. Even caregivers need a hand sometimes. You may want to ask your husbands doc's for some prescription magic mouthwash and also pain meds. We all get to a point in treatment where these items become necessary.

Best wishes with everything.

Welcome Mrs V. Sounds like your husband's dx is very similar to mine. If you enjoy facebook, check out the Facebook thread under "Friends" in the forum index. Best of luck to you both and keep in mind that while it may take a while, life can get back close to normal (i.e. food will taste good again, pain will go away and life will go on).

Welcome to OCF. This is a great place for support and encouragement. Your husband is lucky to have a wife like you. I would ask for better pain meds. I was afraid to ask for them as I never wanted to take anything, well after my third week of rads, that fear of pain meds completely went away. I was diligent about taking them at least to get the edge off. Keep us posted.

I am sorry it has taken so long, but as you all know, life gets kind of hectic between radiation, chemo and trying to keep him working.

He got the Miracle mouthwash. Works a little, but there has been another side effect pop up yesterday! He has a numbness in the chin/lip at center point, all the way over to the left jaw muscle. :o(

We think it might be a side effect from Cisplatin, Trimeginal Neuralgia. Had to get a Dentist opinion and abscess is unlikely with the numbness in lip.

They will likely change his chemo med. He had a 4cm node removed and found primary on tonsil. ENT is convinced that he got it all! He said they were both well-differentiated and he took large margins when he removed them as well as took several other nodes at the same time, no cancer found there...

Thank you all for the welcome! I will now take my posts to the appropriate subforums!

BTW: I have Tom the message from davidcpa. He is slow to warm, but think he will be contacting the board soon. He needs to!!

Welcome to our home and family to you and to Tom , Mrs V. I agree with the ones telling you to get pain meds as Tom will need them. It's a rough disease and the numbness seem to go along with it. He will have a lot of burning along with the pain. As for the Magic Mouthwash, it never lasts very long and if taken as directed, it does it's job allowing us to eat. Now without discomfort but ut eases the pain. I wish you both well. Tom has the main thing he needs with you as his caregiver.

I am so glad to have found this board. Not only do I use it for searching symptoms, side effects and general support, but I also see that there are some areas I can help offer words of kindness and limited wisdom. We tend to rely a lot on the herbals, meditation, laughter therapies and overall well being of knowing that we have each other for as long as this life permits us to! :o)

Bright Blessings to all of you!