Beth,
Up until now you have had much the same surgery as me. I also had the painful arm while raising it above my head. Hair washing was difficult. Someone told me it could be that my arm was raised behind my head during the long operation. Went to a few sessions which I organised privately with a physio and in the end he suggested it would come good by itself. One day a few weeks late I just realised I was washing my hair with both arms up without a problem. Best wishes for the rest of your treatments.

Beth - My cousin was a nurse at Fairview Southdale for many decades - she just retired last year. Our kids were born there too.
Now, about cancer survival - this time ovarian cancer. My grandmother had it and lived to 93 and my mother also had ovarian cancer in the early 1990s and is still active now at 94. No one gave my Mom a "time line" but they did give one to my grandmother and I think she outlived it by somewhere around 30 years! And of course, there is a long list of survivors here in the OCF forum. Listen to what Brian said about "statistics". Keep us informed.

Hi Beth,
It has been 2 months since my partial glossectomy and total neck dissection. I, too still have soreness and my left arm is not as strong as the right. I am still numb across my neck and shoulders, but the feeling continues to come back, little by little. About a month after surgery, I asked my surgeon to write me a prescription for physical therapy and a very nice woman saw me right away. She gave me some simple exercises to do like clasping my hands together, lying on my back and raising my hands over my head. I did this every day, 10 reps, and have seen the progress. The PT said not to do too much, and to heal before going into much more exercise. I am doing much better now, but am feeling mostly fatigue from daily rads. Today ends four weeks, and I have 2 more weeks to go. Hang in there, and be patient with the healing. Your body has had a major trauma and will take time to rejuvenate. Don't forget your nutrition and hydration and try the 10 reps. You'll feel better soon!

Barb

Hi Beth,

I posted in your other thread but wanted to chim in about the statistics. Don't let them consume you, use them as leverage to show those doctors that your not a number! When I was searching for doctors, one gave me a 19% chance of a 10 year survival.

I know you must be struggling emotionally being so young and having people say "your young, your strong, you can get through it". I was 29 at diagnosis and I would ask myself would I live to see 40, will I be there to see my girls graduate school, that 10 year mark was stuck in my head from what that one doctor
said. So please try not to focus on the number, focus on beating this beast.

And we healthcare professionals are often the worst patients if you ask me, but it has it's perks too....like once they get chewed out for doing things incorrectly and they've figured out you know your stuff, they treat you like royalty!LOL

Beth

The doctors told you if you would have a recurrance after having radiation they wouldnt be able to help you. Thats alot of 'what ifs' in this statement. Please try not to even think that far ahead right now. I had radiation w/ chemo in 2007, a recurrance in 2008 that was taken care of with surgery. I had another recurrance in 2009, again taken care of with surgery. Hope this helps to ease your mind about the stats. Everyone is different, not many get to say they have had cancer 3 times in 3 years and lived to tell about it.

Your mobility in your arm should improve in time. It may not be 100% but it will get better. Your age will help you get thru this. The younger people tend to bounce back quicker.

I know going thru cancer is a terrifying time. Your hospital stay sounds like it was a long nightmare. Good thing you knew what was going on. Glad you have found OCF to help you thru. We are here to support you and will tell you the truth from a patients perspective.

Hi Beth,

Perhaps we're the youngest two in the bunch? I'm 23 years old and found out in March that I had cancer. First of all, I think you need to stop looking at statistics. I was a Statistic Freak when I found out about my cancer. That crap scared me to death. I was having panic attacks and literally planning out my funeral arrangements. My dad was so concerned about me that he called my ENT Doctor to discuss my situation. My amazing doctor called on a Saturday to tell me that I'm not a statistic. Everyone's case is different. Your case is your own, Beth.

I know you're scared. And probably pretty ticked off too. People our age should be starting new careers, getting married, or traveling. Why the hell do we get stuck with this crap? It's not fair and it totally sucks. Beth, this is just a bump in the road for you. I know you're going to do great through treatment. I got pretty annoyed with people when they told me a positive attitude is key, but it's very true.

I know how you're feeling emotionally. Probably one of the worse feelings in the world. Send me a PM whenever you want to vent.

Ashley

F**k the statistics. The first thing my RO said to me, 15 minutes after my ENT had given me the diagnosis - so I was still in shock - was "we'll get you through this". She then cautioned me not to read overly much into statistics I might find on the Internet. She was right about both.

Yes, absolutely, it's unavoidable that we all spend our dark time contemplating the worst. I'm as big an offender as anyone. But that's exactly what it is: contemplation. I began my process with the firm knowledge that this cancer was not going to kill me. Period, end of story. I'm not a wishful thinking kind of guy normally. I'm a realist. This was realistic thinking.

I feel the same way about you. I'm sorry your doctors told you what they did. I'm sure their less-than-ideal bedside manner is tempered by excellent medical acumen... but I can't give them any points for tact.

It's going to be tough. Radiation is a bitch. But you'll come through it with flying colors. Remember to lean on us!

Courage
David2

Hey I just read Ashley's post directly above mine; she's wise beyond her years - listen to her.

Thanks David. What a compliment:)

Ashley,I'm going to second David's compliment. I had the same thought as him about your post.

Working in the mental health/substance abuse field I spend a lot of time telling clients to be very careful when searching the internet. There's a lot of good info out there(and a lot of good support obviously) but there's also a lot of crap.

The stats were one place I really followed my own advice and I stayed away from reading it. I like the philosophy on here that steers away from individuals as statistics.
Dave's MD(from Sloan) told him that there is an 80 percent cure rate. I like that(like any sentence with cure on it). I immediately instructed him to make sure to be in that 80 percent and this is one area I expect my husband to follow what I say!!!

There are some tough moments in the quiet of the night where some unwelcome thoughts creep in but I try very hard not to indulge them and to remember our decision to be in that 80 percent cure category...

I think it's also important to remember that one just never knows in life. While we are worrying about the cancer, we can get hit by a bus. Or we can live full productive lives for many, many years. I think it's worth proceeding on the many,many years plan...

I don't look at the internet and I have since talked to my doctors and asked them not to tell me anything that I truly don't need to know. So at least I got that settled.

David, you are right, I am a realist to the core. When you do what I do for a job, help people with every day activities and then also help get them all cleaned up and ready for the morgue when they pass, its hard not to be a realist.

And yes, it drives me crazy when people tell me everything will be ok and everything will be fine. I would rather they try to show support by saying fight this with all you have, I know you are a fighter, so fight! Because to me, everything won't be ok, yes everything will be fine, but I don't like living a life that is just fine.

I am 25 years old, and I won't ever taste food the same again. Do you know how hard that is for someone who loves to cook and bake. They took the right half of my tongue out thanks to this beast, replaced it with skin from my left forearm. Skin doesn't have tastebuds, muscles, or nerves attached to it. I wont be able to taste or feel anything on that side of my tongue and I wont be able to move it the same. This is me being a realist.

Don't get me wrong, I am glad I went through that surgery instead of letting the beast win, but its just very tough right now to deal with.

I had so much going for me in the right direction for the first time in my life. A great job at a great facility with some pretty great residents. I was getting A's in my nursing classes and actually understanding everything, and I had friends and open lab buddies.

To have that taken from me, because of this beast, is what makes being positive so hard right now.
I know that I need to take this time to get better, and that I can always get another job, or hopefully go back to the same one, and that I might be able to go back to school. But for me, if I am not doing something to make me a better person, then I am just being lazy. And yes, a life without cancer I guess could make life better, but it doesn't make me a better person.

With so many restrictions, and no control over my own life, anything in my life, it's hard to be positive. Luckily my docs got me in to see a resident in the psych department and they put me on a anti depressant. I told them flat out, if they didn't get me on one, they were going to have one heck of a battle, when I get depressed, I refuse everything. So I am glad they did.

In a few more weeks, I should be less depressed, in a better state of mind, and be starting radiation.

Thanks for the advice and support.