Hi! I'm Wendy, new to this board. And so grateful this forum is here!

First diagnosis, carcinoma in situ, 1993. Then nothing for 17 years. Recurred in 2010, and again in 2012. Treatment was surgery, alone...no radiation or chemo. Now cancer has re-emerged with a vengeance. Squamous cell. Surgery scheduled for 5/12...will remove most of the front of my tongue and a lot of the left side...doc won't know how much will be necessary until he gets in there. Also, part of jaw bone will be removed and reconstructed using bone from one of my legs. Doc expects to follow with radiation and most likely chemo. Will have a trach tube in for the duration of the radiation (4-6 weeks), and a feeding tube for probably that same length of time.

SCARED. TO. DEATH. How do you deal with the realization that your whole world is going to change so drastically? And what are your experiences with the trach tube...that frightens me.

I feel like such a big baby! I always thought I was a strong woman...well, where is that strength now?

Would appreciate guidance from you who have been, or are going, through the same thing.

Thank you.

Oh, background info: Former smoker (quit in 1974) and drinker (quit in 1973).

Welcome to OCF, Wendy! You have found the very best place for info and support. We understand where you are coming from as we have been thru similar situations ourselves.

Im sure you are much stronger than you are giving yourself credit for. Who wouldnt be scared facing what you described! Its completely normal for you to be afraid of what your future holds. You are going into uncharted territory and battling a potentially deadly disease. By reading about your illness and its treatments, you will become a strong advocate for yourself. This will also help you to feel more in control.

Ive had a trach and it was not fun but looking back it wasnt the worst thing Ive been thru. Tell your doc you want a possey muir valve trach so you will be able to talk if you are able to. I also suggest seeking out a speech pathologist now so you are prepared for after the surgery to begin getting help. The earlier you begin, the better response you will have.

If you havent already started eating all your favorite foods, do so now. You will go thru a period where you are unable to eat and you sure dont want to have cravings during that time, so eat now! Dont worry about putting on a couple pounds either! You will likely lose weight with the treatments you mentioned.

Anyone who offers their assistance, tell them when the time comes you will let them know what they can do to help. Make sure to write everyones name down for later in case you need someone else to give people a call or text to get them to help. You likely will need people to stay with you as much as is allowed after your surgery. You probably will not be able to be understood by hospital staff so you want to have someone there to be your advocate and your voice until you can speak for yourself. You may want to bring a dry erase board and a little bell to the hospital. The bell will alert staff and your advocate when you need something.

Prior to any treatments, see your dentist for a thorough check up and take care of any questionable teeth now. Get a complete blood work done, including thyroid levels as they likely will change down the road after having rads.

Its not easy facing upcoming life changing surgery. By focusing on what within your control it helps to make it slightly easier. By being productive and staying super busy, it will help you to pass the time. Be aware that depression is common with OC patients and its nothing to be ashamed of if you need help to get thru it. Many patients (and quite a few caregivers too) depend on anxiety meds and therapists to help them on a temporary basis. Its all just another tool (just like the trach and feeding tube) to help you manage your illness.

Stick with us and we will help you every step of the way. Best wishes with everything!

My mom had that surgery almost exactly April 27 2015 for recurrent cancer. It was terrifying! OMG, I'm not going to lie. They predicted she wouldn't need to go home with the trache but she did. That was the scary part for all of us. But my sister and I were talking the other other day and she was all, "remember how scared we were of the trach. Hah!" The Trach stayed in for 4-6 weeks to protect her airway as swelling went down. Then it came out and now we're all, "remember when that was scary?" It was, seriously. But we were given a trache care class at the hospital and we were encouraged to ask the nurses to help us practice while still in patient and after the first few times at home no big deal, really.

As for the rest of it there were big changes. And her life has changed since the surgery. But not as much as I would have feared. She just went on a trip to North Carolina to visit one of my sisters and is planning a trip to Norway for this summer.

Hi, Wendy.

Welcome to the forums! Christine couldn't have said it better in her post.

Any cancer diagnosis is terrifying, but especially the one that you and so many of us others got. It is life-changing, but as "bwb" mentioned, her Mom is doing pretty well now.

I wish you all the best in these extremely difficult times. You will be in my thoughts.

Do you have someone who is able to be a caregiver? You will need to lean on those who are willing to show up for you. Some people have a hard time asking for and accepting help. Now is the time to let that go. The more you have set up prior to your surgery, the better and more smoothly things will be when you come home.

One thing that really helped me was to bring a large notebook and take it with you to all of your appointments...all of them. I used a 5-subject notebook and used the divided sections for different specialties...surgical oncology, medical oncology, radiation oncology, medication logs, and "other" such as subspecialties like speech & nutrition.

That notebook was the only thing that gave me a sense of control in my situation. Also, if someone can accompany you to your appointments and take notes in the book and be a second pair of ears, that is helpful.

I would think of questions between visits and immediately write them down as I would tend to forget them later. At each appointment, I had a list of questions and my doctor got used to this routine. First, he would examine me and then we would look a the questions together. That way all of my concerns were addressed efficiently. In the beginning, when I was really ill, my husband would do the asking and taking notes for me. Then I was able to do it.

Stick with us and we will hold your hand through this process. Everyone needs help, advice, and comforting reassurance during this time and many times after...this is your first step in continuing to be the strong woman that you are!

Love in OCF,
Kerri

Wendy, I want to add my welcome to our family. You're one of us now and we're here for you for whatever you need. I can only imagine how scared you are. But you sound incredibly strong and it sounds as if you have a good medical team in place. Take comfort in their expertise and in the body's natural ability to deal with adversity, and to heal.

I only had a trache for maybe 5 days. It's certainly an adjustment, but you get used to dealing with it very quickly. I'm sure they'll give you all kinds of help with communicating and taking care of it. As bwb said, eventually you'll be thinking back to a time when it was scary.

Christine is our co-leader here and has given you advice that's pure gold.

My thoughts are with you and please come here whenever you have any questions or just want to talk.