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