Okay folks what's up with me?

Mom's surgery is Thursday, she is in so much pain right now, she said the whole left side of her face & throat hurts so bad, now this is a woman that doesn't complain. She took nothing but tylenol after her open heart surgery, walked around in high heel shoes when she broke her foot & had 7 kids without ever complaining.

I can't hardly stand this! She was prescribed liquid loratab & I can hardly get her to take it, all she wants to do is rub it on her tongue, she says it numbs it. The doc tells us if we think this is bad now just wait till after surgery. They will be removing the lymph node on the left side of her neck & the tumor at the base of her tongue. I'm scared to death. I guess my biggest question is will she be the same woman she was before all this? Will she be able to talk to me & give me all of her good advice? Will she be the same grandmother to my kids. What are we in for, all I can think about is the worst! I want to spend as much time with her now before surgery because I'm scared she's not going to be able to function, it's almost like I know I'm about to lose her. When I'm not at her house I'm at work or home but I can't function normally cause all I can think about is her at home in pain. It is affecting my work performance at home & on the job.

I'm hoping you guys can give me some answers or something that can make me feel more at ease. I hope someone can tell me that I'm just being a drama queen. I did'nt feel this scared at first but since it's getting closer -gosh, I can't explain it. Just someone please let me know what to expect after this kind of surgery. I hope someone can tell me to calm down & say it's gonna be alright. You've helped me before, I guess I just need a little more comfort.

This post sounds a little selfish I know, I want everyone to know I'm thinking about all of you & I can say you are all so brave & I guess I just need to know how you got that way, I'm sorry I sound so selfish, it's not even me who has the big "C" I love my mom & I just want to keep her forever. Thanks for listening to me whine. My prayers are with you all! Thanks, Tina

Hey Tina,
I hear your fear and I have had lots of it myself. Dan recovered from his tongue surgery and modified neck dissections fairly fast...he was back to work in 5 weeks. He stayed in the hospital all most a week and the next week at home was a bit rough. He was very weak and it was hard. But after that his recovery was quick. When I was so very scared and fearful, I prayed and God did help me. I cried lots and it did affect all other areas of my life...to be expected with such a big thing going on in your life. I am praying for you and your mom.
God bless,
Debbie

Hi Tina,

You most certainly are not selfish. I think that your Mom is very fortunate to have someone like you to Love her and want to find out all you can for her.

I also thought that I would be in a world of pain after my surgery. HONESTLY, I had almost no pain at all from the neck dissection. I didn't have tongue surgery, mine was a tonsillectomy, and while that part bothered me quite a bit, it was kept quite tolerable with percocet and a numbing spray.

You are all going through a LOT right now, emotions, anxiety and the rest. Your mother will still be your mother and your children's grandmother. Love her, comfort her and give her all the support that you can. To borrow a long used cliche....."Hope springs eternal....

God bless you all and think POSITIVE!!!
and keep coming back with your questions

Jack..........
Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV, Srgry 1/23/97 tonsillectomy & mod radical neck dissection, Radiation 35 trtmnts both sides

Tina, it is ok to whine here.

Take a deep breath, You will be ok. I know that this seem so unfair! At this point, you and your family have to trust in her caregivers. Your mom is in for a bit of a challenge but she can do it and she has a resonable chance to survive. No one on this earth knows what the outcome will be. Stop trying to predict what will happen or worry about it. (I know that is hard)

What you can do is continue your support for her, learn more about what she is going to be facing and pay attention to what her doctors say. She will likely find comfort knowing that you are looking out for her. Take a note pad with when you see her, ask questions of her caregivers.

Ask here any questions you need answered.

Hi Tinaelise,
It's tough waiting for the surgery. I waited 2 weeks for mine and it's not uncommon to wait that long.
I am also the mother of 7 and the way you talk about your mom makes me think of my third daughter, Megan, who is 20. Her fear of losing me was so evident and it is just in the past few months that I have seen her fear subside and she is moving on with her life now. She spent every waking moment at my house after my surgery and for months and months afterwards. She was so sure she was going to lose me. It must be a horrible feeling to think about losing your mom, I feel sad that you have to feel that way. My mother is 61 (I'm 43) and I could not imagine my life without her in it.
I can try to help you with how your mom might be feeling right now. I know that all my concern and thoughts were for my daughters and my husband, I worried that me being sick would change their lives, fill it with worry. Of course I felt a fear that I had never felt before but it always came back to my kids and husband. On the other hand, I didn't want them to see that I was upset or scared so it was a confusing time. I am so used to being a caretaker, it was next to impossible to let others take care of me. And I am not a casual caretaker, my lifes mission has been to raise my children, they are the center of my world. The way you talk of your mom I have a feeling she is that same kind of caretaker. I bet most of her worry and fear is centered around her kids.
Your mom is older then I am so her age will make it more difficult for her, but I bet she is a very strong woman. I had the lower half of my jaw removed and I had very little pain after the surgery. The pain I did have was very well controlled with medication. I will pray that your mom doesn't suffer from this surgery. Keep us posted and stay strong.
Minnie

Hi Tina! OK, first things first! Take a big breath & exhale. Now again! Your concern for your mom is justified, but she sounds like one hell of a lady! I am not one to sugar coat things & I don't want to scare you either. The road ahead is not a bed of roses, but is doable. Your mom sounds very strong in spirit & it will certainly be to her advantage & serve her well. Draw from her strength as you always have. I'll bet she will surprise you once again! She will most certainly need you to be there & be strong also. This disease changed me & for the better as a person I believe. I most definately appreciate my life more completely now. Find peace & calm & roll with the punches! My thoughts are with your mom & you & your family. Time flys. This year has gone so fast for me & I've been through similar treatments as your mom is about to start. Your friend, Erik Get your mom on this board, we need her. We need you as well.

Tinaelise,

You're not being selfish. You're reacting in a very normal, caring and loving way. As you already know, you will get a lot of support, comfort and help from all of the wonderful people that participate on this site. What I can share with you from my experience as a caregiver is to take a deep breath each time that you feel overwhelmed. I know it sounds corny, but I took this advice from others, and healthcare professionals, and it helped me maintain my composure as best as possible given the circumstance. It kept me from flying off the handle on several occasions. Everyone recovers differently, but of course there are alot of similar experiences during the treatment and recovery process. My mom had her lymph nodes removed as well, her primary site was on the inside of her cheek. We got through each stage of the treatment by knowing it was all part of the process. Removing the nodes was just one of the steps that needed to be done. Your mom will always be the loving mother and grandmother that she is, that will never change.
If I could give you any advice from what I've learned over the past year and a half, it's to try to remain as calm as possible. I know it's not easy -- hell, I'm the poster child for being neurotic, but if you can keep yourself in check, or as close as possible, you'll be able to better manage each day.
All my best to you and your mom,
D

Hello Tina,

Your anquish leaps off your posting and I truly feel your pain. All the advise already posted is sound and logical. No matter what happens both your Mom and your family are in for a rough ride. There are many members of this forum who have survived this treatment. They are here for you as well as us with different oral cancers.
Please don't ever feel your being selfish in posting all your fears. It takes a strong person to open up and vent all your concerns.
Your Mom raised one hell of a Daughter. It sounds like you may be her primary caregiver. It is almost as difficult as having the cancer. Knowledge about this diaease is power. As Mark mentioned write down all the questions you want answered ahead of time. You will never remember all of them at the appointment. Also go to the search forum at the top of the page and read some of the older posting's. You will find tons of information about oral cancer.
Last but not least remember now that you found us (The Oral Cancer Foundation) you are not alone. You are now a member of one huge international cyber family. You will come to know us as we hope to know both you and your Mom.

All my best to you and your Mom,

Danny Boy

Tina,

What I found in the weeks leading up to my surgery was that the doctors had to give me a range of possible results, because they weren't completely sure what they would find when they opened up the tongue and neck area. They warned me that the "worst case" was that I would lose a substantial portion of my tongue, as well as most or all of the range of motion in my left shoulder and arm. (Needless to say, at the age of 39, that wasn't too appealing.) The actual result was that I lost a little less than 20% of my tongue and many lymph nodes in the left side of my neck, but the surgery healed very quickly and just left me with a minor speech impediment that many people don't even seem to notice. My arm movements were pretty much back to normal after a few weeks of recovery. I was eating soft foods again within a few days and my appetite came back fairly quickly. (Radiation was a whole 'nother story entirely, but I gather that's not under discussion for your mother right now.)

Obviously, no one here can tell you at this point what to expect for your mother, but I think there are many of us who went into surgery anticipating much worse than what we finally ended up with. Try not to worry too much -- just help her to prepare as much as you can. I have to agree with Erik that having cancer changed me in some very positive ways and that I've come to enjoy every day much more than I did before.

Cathy

Tina
Like Cathy I found the reality better to deal with, the docs will not suggest anything that is not 'doable' but because peoples expectations vary they always use the worst sinario as a base line. So take heart form these posts and ask as many questions as you can
Sunshine... love and hugs
Helen