How do you do it? I cannot walk into a hospital and lay on a bed and wait for "IT". i HAVE anxieity and cannot make myself do it when it comes down to it. I cry and an so scared and I know that does not help and I am so lucky compared to some, but I cannot do it. How do you do it!Please, I need help- I cannot take anymore!

How do we do it? We all do it differently.
Some of us take anti-anxiety meds,
some of us take long walks by the sea,
some of us work to take our minds off the future, some of us hug our dogs,
some of us sit and rock and cry.
But the bottom line is, that all of us go through some of what you are experiencing.
We find SOME way to put one foot in front of the other one and walk through our days.
It is not easy, it IS possible.


Andrea

Peace, we are all a bit different about this -- I find myself to be a bit of a stoic/realist and am a bit accepting of the things I cannot change, plus some faith in the professionals that they will do their jobs, but my case was a walk in the park compared to yours.

I strongly recommend that you consult with your surgeon and get some anti-anxiety meds to help you get thru this. My Doc made it really clear to his staff that anything I wanted post-surgery, they should take care of it. Sounds to me like you need some help pre-surgery and toughing it out doesn't make any sense at all if it doesn't help you!

Depending on your personal needs, you may want a lot of family and friends around you -- If so, let them know it!!

Most folks really don't know what to do or say when something like this happens to someone close to them, so they do NOTHING rather than take a chance on doing the wrong thing. In other words, if you want folks around you, tell them that in unmistakable terms -- If you want to be alone (that would be my personal preference, but I think you feel differently about this), let them know that also.

Sometimes we just flat out need some human contact to get us through the hard parts of life and this is definitely harder than usual, so someone holding your hand might be just what you need.

Keep coming back here for some cyber-comfort to go along with the human stuff, because some of the folks here have been through what you are going through and can lend unique support.

Keep on hanging in there.

I hated lying on the table with the mask on, but you get through it. On the days I wanted to give up, I looked at my wife's and son's face and I prayed to God for the strength to get through this. On some days I got angry and said to myself I would not let this thing beat me. Some days I made jokes with the other patients. Just talking with the other patients, family and Drs helped too. As you can see I used a little bit of everything to get through. That's what worked for me. Everyone is different as Andrea said and most of felt like giving up. Find your inner strength, it's there, and use whatever you can to get through, just don't give up.

Peace,

If you are at a major cancer hospital with experienced head and neck doctors, you have to trust them to do what's needed. If you have any doubts about what's next, go to a different hospital for a second opinion.

I found that once I had a team that I felt confident about, I could rest and let them do their work. As Andrea said, it's not easy but it's possible. There are plenty of us here who have been through it and know that it's worth the effort to push ahead. Your medical team should have someone who can talk with you about your anxiety and help you to be ready for your treatment.

Cathy

Dear Peace, please tell you Doctors that you cannot do this by yourself, and ask them to assign a mentor who will be there with you through the process. If you do not have a family member available, then ask them to find a patient advocate, a nurse, a volunteer who will stick with you from this point on. I wager that 80% of the people [on OCF] going through this have help and we know how important that is. You sound "very alone".Is that true? If it is, then you need a partner and you need to ask for one. Amy

I did everything on Andrea's list and I prayed a lot as well. I was on anti-anxiety drugs from the date of my Dx and mainly slept through the radiation. The mask was a little uncomfortable and intimidating in the beginning but you quickly get used to it and as you lose weight it will loosen up.

Pete is also right that you need someone to walk along side youi through this. Being "bolted to the table" is the easy part. You can have some very rough days in the side effects department -BUT all of these things can be managed. Just take it one day at a time and you can get through it.

Peace,

I'd ask if they have a psychologist associated with the hospital. They will have some good techniques to help you with the anxiety. It is a normal reaction (I hope, 'cuz I sure had it), but it is manageable.

Clint

Peace,

Do everything everyone else has suggested and have them play your favorite music real loud while you're on the table. It made the time go by much faster and took my mind off of the TX.

None of us are super humans but we all got our minds to the point of accepting the rad Tx. How we did it is probably different for everyone but understand you must do this for the sake of living. Actually I found the table time to be relaxing and the cute young techs didn't hurt the process either. I just dreaded the rest of the day.

Peace, you can do it. Just tell yourself this is a part of your daily routine, like a shower, for the next 6 weeks or so. I marked each day off on my calendar and rejoiced my last day like everyone else did and you will to.

Go girl.

Hi Peace,

My Jack was the biggest baby on the planet BEFORE his cancer. He couldn't even go into the room when our son got shots because his arm would hurt and it made him upset. He thought getting his teeth cleaned was a major procedure to have.

Then along comes stage 4 cancer, surgery, radiation, and chemo and Jack found a strength that neither of us had seen before. You do it one moment at a time, and if you need an anti-anxiety medication - and many patients and caregivers benefit from that - don't hesitate to ask for them.

You also talk to your medical team at every visit. Let them know you're afraid and ask them for help. Also accept help from your friends and family. We organized everyone who was remotely interested to help with the driving back and forth, errands etc.

Keep posting as this is a support group of people who've been there. Take advantage of all the services of the facility you are being treated at. Most have comprehensive interdisciplinary team that work with you.

Jack found visualization worked - he picked calming memories of places we'd been to and put himself there to make the time pass. Taking Ativan to calm down was critical to being able to tolerate the mask.

You can do this, and it's okay to be scared. Jack thought of the radiation like a bug zapper - it was going after those cancer cells and killing them off. Every single treatment killed another one, and you are empowered by doing something to help yourself.

I don't think it matters how you get thru treatment as long as you do. If you need to cry, get medication, go for walks - well you'll figure it out. My big baby turned into a fighter for this, and the experience has changed him forever. You should see him go to the doctor now. He has all kinds of procedures and doesn't think twice about it.

When you have no choice, you find a way.

Good luck and stay strong.
Regards JoAnne

I am now told I have to have 12 hour surgery. I don't think I will make it at 54 but am scared to tell my husband. Am scared, so scared. have you guys made it through this long of a surgery.

12 hours is fairly common for this type of procedure. Some have even longer times on the table. Even cosmetic plastic surgery procedures can take 12 hours or more. Most of us are in our mid 50's (or I was at Dx). Trust me - you'll make it. Being scared comes with the territory get some help for that - and don't forget to breath...

I'm sure you are so scared. Who wouldn't be? No, I didn't go through 12hrs. of surgery (mine was 6) so I can't help you there. But, you will get through this. What are you getting done in surgery, and are they waiting till after you finish radiation? Just curious. One more thing, you know you have to talk to your husband, you need to. Sounds like you really need him at this time. We all need someone we can talk to and cry to when going through this. I wish I could help more. Take care, take a deep breath, and after all this sinks in Fight this beast! My thoughts and prayers are with you. Linda

As Gary has said, long surgeries are not uncommon and 54 is actually young. You are not a high surgical risk at your age. Get some anti-anxiety medication immediately- you need something to help you calm down. Start with the short acting ones like xanax or ativan and if you need to progress to zoloft that can be added, it just takes a few weeks to really kick in.

Talk to your husband - it's not a good thing to leave him out of what you are feeling. That won't make you feel any better. This is the part about how we're there for each other in good times and bad.
Regards JoAnne

Peace,

Not only is 12-hour surgery pretty common for this type of procedure, it is necessary for your doctors to accomplish what needs to be done. Remember, you're not even aware of time when it's going on. This probably sounds weird, but having had several surgical procedures over the years, I've found it fairly relaxing once I see the anesthesiologist come in to put me under -- once that IV goes in it's physically impossible to worry.

For most of us who have had major head and neck surgery, seeing it written up on paper ahead of time looked scary. However, when mine was all over, it didn't feel nearly as bad as the description led me to believe. As several of us have said before, your medical team should be helping you to manage your anxiety now, as well as managing any pain after the operation.

You can do this.

Cathy

Peace --

In addition to the wise advice posted above, encourage your husband to get on this site. Learning what others in situations similar to yours have encountered will help him understand what you will be going through.

In addition, family members and caregivers have their own concerns, and this is the place to address them.

Have you determined where your treatment is being done? If you ended up at UVa or another CCC (VCU in Richmond is the other one in Virginia), they will have people on staff who have worked with many, many patients in your position and are devoted to helping you through all of this.

All the best,
Leslie

Thanks for your input, I am no familiar with medicine and thought 12 hours was a litle much but you guys say no. Makes it a little better. Did you have pain when you first woke up? I am showing my husband this sight, but I have a hard time finding what I posted. Quess I will get used to it.
blessings to you all today

Peace,

I had little or no pain when I woke up. The doctors and nurses who deal with this kind of cancer also know what sorts of pain medication are needed to help patients get through the recovery period. Mostly what I remember was being groggy and trying to get used to the tubes that were in me. When you're coming out of major surgery like this, you're monitored very closely, especially for the first 24-48 hours, to be sure you're stable and can rest as much as possible.

Cathy

Peace, my husband has been through 2 major surgeries for cancer in the last 2 years. He did not [was not allowed to] feel much pain while in the hospital, and his memory of those stays is pretty foggy. I kept a daily journal while he was in the hospital and much of what I wrote, he doesn't remember. It is important to have someone who knows you well with as much as possible, but if you are in a good hospital and have a good Doc, I don't think you will be allowed to hurt. Chin Up, gal. You can do this! Amy

Peace,

The last thing I said to my wife, daughter and son just before they wheeled me into surgery was, "Now I've got the easy part, I'll be asleep through this, you guys have to wait it out". Trust me, 3 hours (mine) or 12 hours (yours) makes no difference, you'll wake up with plenty of pain medication in you. Never hesitate to ask for more if you need it. I think the most asked question I got from my nurses was "are you in any pain?".

Good luck, you'll do fine.

Jerry

Peace,

I just had my surgery two weeks ago. One of the first questions I got after arriving at the hospital was "do you feel that you need something to relax you?" And then they promised me that they would be hitting me with pain meds before I even woke up. As soon as I woke, I felt I needed more relief and they gave me something right away. They do NOT want you to be in pain and they work very hard at keeping you comfortable.

You can do this, I promise you. If I can do it, I assure you, you can too.

Amy

I ahevn't had any surgeries that long. But I have had several of them that were 4 hours or more, and I want to reiterate what others have said: you won't know how long the surgery is when you're under and you won't be allowed to feel much pain after. I think every surgery I've had, the first thing they ask when I have come out from under is whether I'm in any pain. And if you answer yes, they do something about it immediately!

Every time I've had surgery, I've been scared beforehand, until they put me out, but I always get this rush of relief afterwards--it is almost like some kind of high (probably aided by the pain meds) that I've gotten through the surgery and it's gone well. I bet you'll get that too.

The last surgery I had (a couple of weeks ago), I would just tell myself when I was scared that pretty soon it would be over and I'd be feeling the rush I got from the relief that I got through it and it went well!

You can get through this. I know it sounds terrifying but it's not nearly as bad as it sounds.

Nelie

When I had my surgery, it was a first for me. I hadn't been in the hospital overnight since I was 8, and here I was at 50 having "anywhere from 12 to 14 hours" of surgery.

It turned out to be 17 hours. As for being afraid...terrified almost to the point of being paralyed with fear was an accurate description.

As Nelie said, suddenly you're asleep, and waking up with it all behind you is a relief. The pain management issue is one everyone fears, and it's really effectively managed these days.

If you have pain, speak up; they WILL address it. The days of pain medications only every 3 or 4 hours is long gone.

Much luck, you'll do fine
Wayne

I too was very anxious going into my surgery. The most invasive procedure I had before this tongue and neck surgery was a knee scoped, which is less than an hour. I was in for about 8 hours.

I had to be at the hospital early and as soon as I woke I was feeling nausious just because of the anxiety. Lucikly, I had some generic xanax around for other reasons and took one. I told the nurse who was prepping me that I took it and she said it was fine.

I was very naive going into my treatment and was most afraid of the surgery. It is the easy part unfortunatly.

I remember going into the operating room, my doctor was there and the positioned me on the table and then said night! Next thing I remember was waking up to some lady next to me who kept saying, "I'm going to puke." I hadn't yet opened my eyes but was putting my hands in that direction to block anything that may come my way. Again, my humor helped me deal with yet another situation.

Bottom line, do whatever it takes to get yourself to the hospital. Everything else will be taken care of for you.

Good luck.

Jim

Peace,
This can be done and you will see it through. Remember my dear friend you have cancer cancer does not have you, take charge and control of this fight. You can only control how you respond and that gives you the ultimate control. Hang in there we will all be here for you. We all have the right to be scaredand it is acary at moments so call in all bets, lean on your loved ones, friends and family as well as your doctors. You must convince yourself that you WILL be one of those who win.
Lenny

Peace,

My surgery was 14 hours. I was 53 then -- now I'm 57.

My team made sure that I never really felt any pain. Fear, yes -- pain, no -- but I got past the fear when my surgeon said, "you're young and you have the strength to deal with this." For some reason, I believed him... and he was right.

YOU are young and YOU have the strength to deal with this. Believe me... I'm rooting for you!

Ken

My mom is having her lower jaw removed and rebuilt with the fibula and I am terriied for her. This her 5th surgery. 1st was a neck dissection, 2nd removal of the muscle on the right side of neck, 3rd partial removal of palate and the last surgery partial removal of the tongue. this has been the worst 3 years of out lives and I would love to hear from anyone who's had the jaw removed. She's also ahd radiation 2xs so the surgery will be much harder and we dont know what to expect. She is scheduled for Mar 2. I apprecaite any input and my thoughts and prayers are with everyone and their families

Annie, I had 40% of my jaw removed, and rebuilt with fibula and titanium. I was hospitalized for about 2 weeks, and the surgery necessitated a feeding tube and a tracheostomy. That said, when I woke up post surgery I was able to talk immediately. I had a bit of limitation in my mouth opening, and a very slight speech deficit. The surgical inscision is significant, but the scar is almost invisible now, 9 months out.

It's a long surgery due to the micro vascular work (mine was 17 hours) but to be honest, I think of all the surgical procedures that occur with oral cancer, this is probably one of the most straightforward in terms of recovering functionality afterwards.

I'm really sorry to hear she's had such a struggle with it. I am not quite a year out from diagnosis, and it has been incredibly difficult from many different perspectives. Hopefully this will be the definitive surggery that will lead to a turnaround in her fortunes.

If there is anything additional that you would like to ask, or if your Mom wants some specific details, send me a PM and I'll try and pass along my experiences in greater detail
My prayers are with you,
Wayne

Wayne,
Thank you for writing. You did ease my mind a bit I'm just so scared for her. I did send you a PM and I look forward to hearing from you.

I hope your feeling well.

My prayers are with you.
Lori