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

Tina,

Many people have provided a lot of information for you to digest about your mother's surgery. You can also find quite a bit on this website and in the forum. I just wanted to tell you that all you are experiencing and feeling right now is certainly justified under these dire circumstances. You have never lived one day in your life without your mother. Your mind should be racing right now with all the possiblities; your anger must rage; your heart must ache; your denail must prevail. Then, you need to accept your mother has a very bad type of cancer and with your help, she will battle this beast with all she has. Arm yourself with all the knowledge you can and turn everything into helping her find the best possible options available to tackle this battle ahead. There are many that have traveled the road ahead and we can all make the journey easier than if you had not found us.

I am sorry you have to feel such anguish and when I read your post I could still feel the pain I experienced when my mother was diagnosed with cancer in 1999. I remember the doctor telling me about the 40+ pounds of tumors they took out of my 95 pound mother (twice). What I learned after the second round would have helped her chances of surviving but I waited too long. You have a great advantage in that you have found the right place to learn all you can and be the best advocate for your mother's treatment.

Nobody asked for this. Your mother is so fortunate because you will be with her every step of the way. Your role will be much more difficult in many ways. Take deep breaths often, eat good, sleep well and take time for yourself as often as possible. Your life is turned upside down right now but a routine will establish itself soon. I am hoping for the best possible outcome for your mother and I know she feels your love every second of every day. Be sure and let her know because as a parent, even when we know, it just feels good to hear it, too.

Ed

Tina,

I must agree with everyone out here. The ride is long but it goes fast. The neck dissection is a a bit easier than the tongue, but I am sure she will do great.

Typical social misfit doctor. You would think with all that training, a course or two in social etiquette would be a requirement. If any doctor said that to my mom they would be going home with a black eye.

Good luck. Please lean on me if you need anything.

Robert Hamilton

Tina,

One other point I neglected to mention: you wrote about the constant pain your mother is having now. I also had 24-hour-a-day pain from my tumor for months before the surgery, and was trying all kinds of ways to numb it. However, after the standard post-surgical pain wore off (with the help of some medication), the tumor pain was gone -- a tremendous relief!

Cathy

Tinaelise,

The surgery your mother is about to have sounds very similar to my recent one. I have had two partial glossectomies in February and July where part of my tongue was removed. I was able to come back from both of those after several weeks. I had radiation for six weeks until September. Unfortunately, I had a recurrance at the base of the tongue and the CT scan showed a couple of lymph nodes envolved as well. The pain prior to the surgery was increasing daily and I had to take pain medicine that was stronger than ANYTHING I had taken to that point.

Before I go on, your mother must understand that her current condition and future healing depend significantly on her ability to manage her pain. In other words she MUST take pain meds to reduce the pain. Healing is compromised without it.

I was in the hospital for six days and left with a feeding tube through the nose because I could not swallow. I was on liquid pain medicine and liquid food supplements for two weeks before I was able to swallow enough to drink the food suppplements myself. I am still on considerable pain meds: 60mg daily oxycotin and neurontin for long term relief plus 20mg oxycodone for breakthrough pain. My healing is slightly compromised because of the radiation, so I would hope that your mother would heal faster than I have. I am still on a liquid diet.

Take your mother's treatment a day at a time and don't look too far ahead for "expected" results. Everyone's case is different enough that pure comparisons are less than desired. Good luck. My prayers are with you all. May the Great Physician provide complete healing.

David

Hi Tina: Wow, you are dealing with a lot & have every reason to be upset. This is a good place to vent (and no, you are not being selfish). I have two things I'd like to share. First of all, I visited my brother the day after his neck surgery and he was up and complaining because he couldn't find a section of the paper he wanted. He complained about the wait (delay in surgery, someone's surgery delayed his). In short - he was his usual self & not in much pain. At least none that he would admit to. Your mother may also be like this.

Secondly, as you are noticing, you are and will be under a lot of stress, both in dealing with the immediate needs of your mom, and in dealing with your own feelings about her and what is happening to her. Therefore, you may want to talk to your doctor at some point about anti-depressants for you. There are so many new ones on the market now, developed to target special aspects of depression. Many are developed to treat anxiety, some for sleep disorders, some for manic depression. Most are not addictive and will help you cope. Anxiety is a symptom of depression and it can be treated w/medication. Another aide is exercise. Exercise is also very helpful to in coping w/stress. Take time EVERY day to go for a walk or work out. Take care of yourself! Eat chocolate (seriously, it does help lift moods). This will be a difficult time and like Ed, said, you need to take care of yourself too. I am joing Helen in sending hugs! - Candace

Tinaelise, all of the posts above are good information and will give you a feel for what your Mom can expect. Don't worry too much. I know thats easy for me to say, but the surgery I had was the easiest part of treatment. And at age 53, tonsilectomies are not recommended by doctors due to the severity of the recovery. So trust us when we say surgery is not that big a thing. There will be pain, but the meds provided by the doctors will take care of that. Your Mom must take that medication to facilitate her healing process.

A positive attitude will also go a long way to help her get through this. Her attitude as well as your own. I know you will do all in your power to support her with your attitude and actions to provide her the highest level of comfort. I can tell from your post that you are a remarkable daughter and will take care of her. As mentioned, don't forget to take care of you also, as you have the harder job. Caregiving is a lot more difficult than just being the patient. I know, as my wife took care of me and in retrospect her job was a lot harder than just laying there asleep while the doctors did all of the work.

Will pray for you, your Mom and family that He will guide the doctors to achieve the best result and give you and your family the comfort you need to look forward to your Mom's complete recovery and defeat of this nasty disease.

Again- you folks came to my rescue!
You are all such great people -

The morning after my post, my exhaustion had gotten the best of me, I awoke to my little girl standing in front of me with her sponge curlers all up in her hair, looking at her little face I just smiled at her, for just a moment I thought everything was normal again but then she said, "mama it's 8:35" Oh my gosh I had overslept, I jumped up & just started running around like I was crazy, kids were suppose to be at school at 7:45 & I was suppose to be at work at 8, needless to say after a few phone calls, my day began -At this point I had decided that I was just crazy & I was permanently mental until I came home at lunch & read all of your encouraging words & advice.
The breathing really does work!!!

I just want everyone to know -you have helped me tremendlously & I'm not quite as worried.

We will be leaving here in 7 hrs. for mom's surgery, I know all of you will be thinking about us, I won't be around a computer all day but if things goes well, I should be back here tomorrow night & I will keep you updated, mom is still in so much pain but in good spirits.

I'm so happy to have found you guys -you are my 2nd family.
I can't tell you how much it means to me for you all to talk to me -love to you all! Tina

Tina,

I was in your position at one time. My e-mail address is [email protected] please send me a private message and we can exchange phone numbers so we can talk if you feel like it. I know exactly how you feel.

Hugs,
Dani

Tina,

I hope your mother's surgery went well and you are still taking those slow, deliberate, long breaths. It may seem unbearable at times but hopefully it will get better by the day.

Ed

Tina,
I have not been on here in quite awhile but after reading your postings it brought back so many of the same emotions I felt when my mom was going through this. She had her lymph node removed, tumor under her tongue & a portion on her tongue removed. It was pure hell seeing her that way. My mom was my rock, she kept me going. I, unfortunatley lost her 1 year & 2 days after her surgery because this evil disease came back faster than ever & just attacked all of her. I cherish EVERY moment spent with my mom after her surgery. She was able to talk again after awhile & it was magical to hear her voice again. She was strong & brave (more than I think I could be). Even when she was in pain, she just shrugged it off & did not complain. I pray that your mom is doing OK, you will get through this & I hope that she will do just fine. Please though, remember your other loved ones, sounds like you have kids, I let all of my life go when my Mom became ill again, my family, my bills, my job, my health. I learned the hard way though that life goes on whether or not you feel like going on with it. Luckily, I have a huge hearted little girl who loves me enough to know when I cry to come hug me, I have a husband who could have left in this situation, but he has stuck by me & my MANY moods during this whole process of acceptance. My bills on the other hand, boy they just don't give up, but hey, I can handle them. My employer is so understanding & I am going to the doc to take care of all my issues. If you ever need to talk, I am here ([email protected]). You will be in my thoughts. Veronica