Lucky to be alive, but still the tears

LiseA

I've been hesitating to post this because I know many have suffered far more than I am or have suffered, but I don't know where else to turn right now....

I have to go back to MDA to discuss pathology results and have my post op visits.  I see they have set an appt with the oncologist.  I'm terrified of chemo. I'm terrified of the thought of radiation.  I keep thinking about all my other health problems, and this surgery that took me close to hell and at this point post surgery, I don't want to deal with more.  Maybe it's post surgery blues, but I can't stop crying today. I was doing so much better a few days ago. 

I really feel embarrassed to post this and hope no one is going to be mean and tell me to buck up and quit whining. 

CivilMatt

tears are normal

LiseA,

 

Nothing to hesitate or feel embarrassed about, if you are on the H&N forum you have every right to be terrified.  Most of us do at the beginning, but it gets better once you understand what’s going on and get (semi) accustomed to the procedures.

Take it one day at a time and if you need chemo and  rads there are things you can do to help reduce the less pleasant side effects.

Best of luck, you will be ok.

Matt

wmc

So far from that. Never be embarrassed here...........

Lisa please never feel embarrassed to just say how you feel and you are scarred. I'm pretty sure we all have been there, I know I have. This is the best place to come and just get it out. Remember this is a "Support Group" and this is what it is for, and why many of us stay. Being able to really say how you feel, and never be judged, and to persons that have been there and do understand is what this is all about. I have come here and just vented because if I really do vent to my family, I scare the hell out of them so I really don't. Just last night was really bad and I had some pretty heavy problems and concerns. I am a neck breather and my airway [hole in my neck] got 60%+ plugged and the stoma can bleed easy and it can get to me. Now my wife heard me up, and said this morning, you had a bad night. I just say yep, and leave it at that. So you see, I can tell you and the others, but not my family as it is too easy for them to take it wrong.

Now this is easy to say to you and I know it will be hard for you to do but it might not be as bad as you think. That won't make it less scary. When I was going into surgery the had me as T4; N2; M0, which means stage 4 and spread to lymph nodes and last month it was not this bad. Lord did I pray. I prayed as I held my Mother's rosary, to just give me the strength to handle what was going to happen. Not to be healed, or make it go away, just give me the strength to accept and live with losing my larynx and have a hole in my neck to breathe. It must have been heard because when I woke up I was not in ICU, which is normal for the first 24 to 48 hours. I wrote the nurse and said am I in ICU? She had this smile and said, no you are in your room. Right then I knew I was going to be ok.  Only 5 thought I would make it and that is counting me, my wife and doctor and two from work out of 250. My Son didn't or my Brother. The doctors came in, all five, and told me it went very well and I was only a T3; N0; M0. That meant it didn't spread and was fully contained in my larynx, which is gone, so the cancer was all gone as well. As a precaution, they did a neck dissection and took 86 glands which were all clean. That was if it returned, it won't get to the lymph nodes. I am very glad they did.

So you see you may get better news than you think. I always prepare for the worst and that way I can't be worse only better. Now being scared of radiation and chemo can scare anyone, and that is also a very normal feeling.  You know that MD Anderson is the best you can get to be treated and they do many and really know their sh@t, so you are in the best hands. Now as far as the crying, that also is a normal response, and yes I have also. It is good for the soul and helps.

I don't know it this will help much, but hope in a small way it will. Remember that we are open 24/7 and always feel free to just vent and get it out as it helps just writing it down. Please know you are in my thoughts and prayers always. You are not alone in this and you are so much stronger than you think you are. Everyone here will be there for you.

Bill 

Barbaraek

LiseA - you can be yourself here

We all handle stress in different ways. Here on this board, you have the right to react the way that you do - we won't judge. But we will provide encouragement and prayers, always. Not knowing is one of the hardest things - is someone going to the appointment with you? Have a list of your questions ready and written down. It's easy to get overwhelmed and forget to bring up something you wanted to ask or discuss.

Barbara

the_wife

HUGS

Oh my gosh...you should never feel hesitant to post here and reveal your true feelings and emotions. No one is here to be mean or diminish your unique and personal experience. We are here to support one another. 

If I were in your shoes, I think I'd be doing the same thing right now. One day at a time. One hour at a time. One minute at a time.

Sending gentle hugs!

MrsBD

Tears

Tears are absolutely normal! You've already been through a lot and the thought of more can be unbearable. Please remember we've all experienced those feelings and are here to help you any time. 

Flyfisherman

Tears

Lise,  don't feel bad at all!  It has been more than a year since I had surgery and it will have been a year since I finished my chemo and radiation at the end of June.  I still have days that I am more emotional.  This is not at all what I was used to before as I felt I was tougher than that!  Don't think it is unusual at all.  Just take advantage of the support net that you have.  I never realized how many people prayed for me and pulled for me until I needed them.  When I did, they were there and they still are.  Even people like those here on the boards.  We have had our trials and we respect what you are going through and understand how you feel. 

The way I look at it, the cancer and treatments I have had have shaped me into the person I am supposed to be.  Now I live for every day and realize that the things I thought were important at one time, maybe aren't so much!  But the things I took for granted before, I don't any more.

I'll be pulling for you and hoping for good news from your appointments.  We're all here for you.

SusanUES

Perfectly natural...

Lisa, everyone handles this so differently...and I think tears are a very good way of releasing tension and anxiety.  Personally, I never cried once, I'm pretty stoic.  They rushed me into surgery and six weeks of radiation quickly (Stage III) and I didn't really have time to get emotional.  My way of coping was to give it over to God immediately and that gave me a great sense of comfort and release.  Trust me, YOU WILL GET THROUGH THIS!!!  It won't be a walk in the park on a sunny day...and there will be things that will change forever...but you will survive, adjust and enjoy many fine days ahead.  I finished rads in June of last year and life is pretty good again...and so it will be with you, too.  Cry whenever you want, punch a pillow, scream your anger in the shower, it's all good, honey.  Cancer singled us out for a particularly nasty kick in the pants...you will kick it right back in the privates!

swopoe

Crying is normal! Please come

Crying is normal! Please come here anytime you need. My husband finished treatment 3 months ago, and I still well up with tears sometimes. It isn't fair. Sending my love and hugs!

 

tommyodavey

swopoe said:

Crying is normal! Please come

Crying is normal! Please come here anytime you need. My husband finished treatment 3 months ago, and I still well up with tears sometimes. It isn't fair. Sending my love and hugs!

 

Completely Normal

LiseA,

I can't speak for everyone here but it's a pretty good guess to say that dealing with oral cancer was the hardest thing we all ever went through.  For me it sure was.  The surgery I had was the worst possible experience ever and I hope to never have to walk down that road again.  If it comes back, then walk I will.

You went through a terrible surgery and crying is only normal.  This is where we let it all out, so in our real lives we can appear to be handling it quite nicely.  No one here will ever tell you to buck it up or anything of that matter.  This is the place to whine, cry, complain, ask "why me?" and whatever you need to say to feel better.  We've all been there and understand completely.

Cry away~~~~~

 

Tom

LiseA

Thank you all for your

Thank you all for your wonderful words.  I have been crying less, but becoming a bit anxious now that we have appointments for MDA next week.  This is when I will learn exactly what was found, and meet with the oncologist and radiologist.  I had hoped that after this grueling surgery, I would be spared from any other treatment, but then I'm sure all cancer patients hope for the same. 

I don't tell my family (husband and children) my fears or when I cry. I know it's overwhelming for them because they can't fix this.  I was a caregiver for my sister during her battle with cancer, which she lost, and it was a most trying time for me. I got sick from worrying and trying to do everything for her, so I don't want that for my family.

I encourage them to continue going to the gym, and having a social life.  They will be much stronger to help me when I need it most. 

I did start PT, OT and speech yesterday in my town, so that brings me some hope that I will begin to be more independent soon.

It's so hard dealing with MDA in Houston, but living in OK.  Docs at MDA said they had to see me befoee deciding IF I needed any PT etc. My regular doc here said after seeing my "stroke like" face and inability to raise arm, slurred and lispy speech, that he's not waiting. I was in agreement :-)

At least I have the proper exercises to work on now, and see some

hope. 

swopoe

When you are at MDA next week

When you are at MDA next week, if you need anything while in Houston let me know. I am always available! Best of luck!

Nadine