Hi, I was diagnosed in February of this year with cancer of the tongue. I had a cold sore which I treated, it went away but another came back. I also had a hard white ridge on the edie of my tongue, but as I always bit my tongue I blamed this hard ridge on this. I eventually went to my doctor who immediately referred me to the Dental hospital. They did a biopsy on my tongue and a week later told me it was cancer. I was given two options, one do nothing and I had 6 to 12 months, two -have surgery which would remove a part of the tongue, which they would rebuild using a piece from my arm, and I would feed myself using a pet tube. I chose surgery, however when they went to operate they found the tumour to be far bigger than they anticipated and they did not proceed with the surgery as it would have meant taking most of the tongue leaving me without the ability to talk or eat for the rest of my life. I woke up in ICU knowing something was wrong,and the surgeon was there to explain things. After more discussions i opted for chemo 5 sessions, and radiotherapy - 35 sessions. This had the effect of reducing the tumour.

I eventually had surgery in November, and got our of hospital on 20th December. The theatre procedure was R hemiglossectomy, R modified radical neck dissection, L anterolateral thigh flap.

I am doing ok, unfortunately I have swelling to the right side of my face, as they removed three of the five nodes on that side of my neck. I feed overnight through the peg, and I have some drinks during the day so I get the required amount of calories each day.They didn't touch the left side. I have some swallow and I can talk, its a bit garbled, but my family can understand me.
Can anybody give me some advice as to how to get the swelling down? I found some massage techniques on the net but I have yet to try them.

My family are having Christmas dinner right now and I can't bring myself to join them, I loved food so much, and still do.
I don't know how to add my signature, all I know is I had squamous cell cancer. My surgeon is confident he got all the cancer.

Adrienne

Adrienne - welcome to our family and so sorry to hear about all that you've gone through. You're in the right place for help, advice and compassion. I don't have any specific advice about swelling reduction but I'm sure someone will.

Mainly I applaud your bravery and fortitude. Very glad to read that you're getting all your calories. Keep that up! Although it might not seem so now, there will come a time in the not too distant future when you'll be able to join your family again for meals, and will enjoy them.

My thoughts are with you.

Hi Adriene, one year ago I was like this! Just keep calm and this will get better!

Welcome to OCF! Glad you have found the forum to help you manage your recovery and after effects. I have sent you a link with some info about how to make a signature and other tips.

Best wishes with your continual improvements.

Adrienne,

I had a bilateral neck dissection and massive swelling. For the most part it is just time, but working on the neck mobility and range of motion has helped. Also, my physiotherapist told me a 3 finger massage of the scarring would help, so I have been doing that as well.

Good luck, and keep us posted!

Hi there.. Congrats on getting through it. Your situation sounds odd in comparison to normal treatment but I'm so glad it worked. I am very surprised they gave you a time frame, when it sounds like you had no metastacies.

That said lymphatic massage will help build new lymph pathways, also being active will help as well. Even if it's just walking a dog. Hugs and welcome.

Hi Adrienne,

My husband Reggie just had similar surgery on Dec. 5. 75% of his tongue and some throat and soft palate with left thigh flap. He is 21 days post op and still very very swollen. His doctor said that the neck swelling would just take time. About 3 months. The flap which has a muscle attached has to atrophy some before the swelling goes down. His tongue is still 3 times the size it should be. But the new tongue is pinking up and looking really good. Hope that helps.

Welcome, but sorry for your treatments, and surgery. Other than it taking time, maybe ask your doctor about a therapist that specializes in lymph drainage therapy, LDT, and doing light exercise like walking, swinging arms to get the Lymph fluid flowing, and when that can be done after surgery. The manual Lymph drainage has to be done a certain way...direction, pressure, and each area in the face, neck has a different pathway to do, so it's best to see a professional. Some find Lymphdemia relief with acupuncture also, but again, see when, and if that can be done. Good luck.

Hi
Thank you for your advice, I saw my consultant yesterday and he gave me the name of a therapist who specializes in lympheodema so I emailed her and am waiting for a reply. I have been doing light exercise, but now I will concentrate on exercises which focus on the arms.

Kindest regards
Adriene

Hi Adriene,
It's nice to meet you. I don't have any advice on lympheodema, but I hope to be able to offer some help to you at some stage. Hang in there, Linda

Adrienne

I was sad to read that you did not feel like joining your family for Christmas dinner. I'll bet they missed you.
While the cancer may have taken away your ability to eat easily, don't let it take away the social aspects of a meal with family.
It's been almost four years since I have had even a bite of food or a sip of any liquid, but I enjoy sitting with my family at our holiday meals. Sure, I'm putting some liquid down my feeding tube instead of food down my throat, but the company is great. Although my experience is that champagne won't work well in the tube, stick to wine for a New Year's toast.
Charm

Hi
You are right, they really missed me, and I really regret not joining them now. I will take your advice on board and join my family for our New Year dinner and a New Year toast (wine not champagne). There is a very slight chance I could get my swallow back, and an even sighter chance I could eat again, but I am not thinking about that at the moment. I am exercising my new tongue each day as instructed by my consultant. I am in recovery mode at the minute, enjoying my family. My boys are on a college break at the moment and I love having them at home. It's been so hard on them but they have been fantastic and are looking after me so well, as is my husband and my Mom. I am so lucky to have them all.
Thank you again for replying to me, it has made me think about things.

Adrienne

I saw this exchange and was reminded of the column Charm wrote for the Washington Post Health section a couple of years ago.

Adrienne

I'm glad you found my post helpful. I'll be toasting you and all the OCF posters this New Year's Eve wishing you all the best of health.
As in my article that Leslie posted, I was struck by how lonely that scene of Roger Ebert eating apart from his wife looked to us. Dinner with my wife is the high point of my day.
It's all too easy to let the side effects of the cancer treatment isolate us. [quote]Man does not live by bread alone.[/quote]
Charm

Adrienne - I'm so glad you've been able to have more positive thoughts about joining your family for your New Year dinner! I'm sure it will be a wonderful sharing of your lives and appreciation for each other.

Charm - what a beautiful article - you have a way with words that not only brings a tender scene to us but the emotions that go along with it. The juxtaposition of the Vitamix and "transubstantiation of texture" conjures up for me something akin to a religious experience! Savoring the aroma was something my son would do when he could not taste and had trouble swallowing anything. He would spend several moments close to the bowl of chicken broth, inhaling and enjoying the vapors rising up from the broth. He said it was almost like tasting.

Leslie - thanks for posting the article!