My dad had surgery yesterday at The Cleveland Clinic.
As I was not allowed to go to his doctors appointments from diagnosis up to surgery (he and his wife's rules), I learned yesterday, post surgery, that his was a Stage IV, SCC
I believe he has 3 flaps. One upper back right to help with bone deterioration from the IMRT 4 years ago. I also learned that it spread to the floor of his mouth, thus a 2nd flap there. He was supposed to have his jawbone removed, but they only took 1/2 of it they said. He was also to have a flap internally and externally in right cheek area, but they were able to leave the external portion and use a 3rd flap inside his cheek. I also learned yesterday that he had a radical neck dissection, many nodes involved.

I need to vent safely for a minute, please. . .

UGGGGGGGGGGGGGHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH

Why do some people feel they have to keep their loved ones in the DARK????? My dad knows I deal better when I know the truth and can empower myself with knowledge, then I feel I have some small bit that I can control. Everything feels so out of control for me now. I was prepared to see my dad for a minute with a trach, a respirator, drain tubes, etc..., but I was not prepared for the unbandaged radical neck dissection. How could he do that to me??? I feel that to leave your 43 year old daughter and only child in the dark is the most selfish, cold hearted thing a parent could do. I don't bawl and get all emotional on him, so why would he have done that? (would that really be a bad thing to allow me to share a good cry with him about it?) He told me it was stage 1. He said a couple of lymph nodes were involved. He didn't tell me about the radical neck dissection. HE LIED TO ME. HE DECEIVED ME. Didn't he realize I would finally find out AFTER surgery? I am fed up with being his only child and the black sheep of the family. I am a successful career woman with a degree, single mother of a fantastic son turning 18 next Thurs., and am treated like crap by my family.
I'm fed up with the don't tell anybody mentality. Like that will make it go away. I'm sick of the HIPPA privacy act being used against family members, flesh and blood family members who have a vested emotional intetest. I am an adult, I have not needed to be protected from the truth for a very long time. I am the only family member to carry his genes. The very genes that one day may turn this dreadful disease on me.

Thanks to their lies and deceit, my journey through this with him is much more difficult than I ever imagined. God help me.

Oh DEb,
I do feel for you--it must be awful to feel excluded.
And having no husband and no siblings to talk it through with must make it feel even lonelier.

Maybe, your dad just didn't want to admit to himself what he was hearing from the doctors and felt that talking about it would make it seem real, whereas not discussing might somehow, magically, make it not so serious.

At the moment you can do nothing, I guess, except just love him, tell him you love him and are always there for him. From the sound of it, he's not in much fit shape to talk/discuss and will just be grateful for hugs and hand-squeezing so he knows you're close.

This must so be a shock to your system and I can well understand how frustrated you feel. I'm also one who 'needs to know' and couldn't cope any other way. I also let my far-away grown-up children know most of what's happening with me, but sometimes I think my son would prefer to play ostriches--I just feel it's only fair to share my journey with them.

Come on here and vent whenever you need to do so--we understand!
Thinking of you,

Brenda

Deb

I dont know what to say except ..I am soo soo sorry . I think as parents we try to protect our children, I know in my case that is why I didnt divulge as much info as I had. yet my kids are young and wouldn't understand. And as Bren said Denial. I am soo sorry that you are going through this . And somtimes as parents we dont make the best choices. I want you to know that I am thinking of you at this time and your father too.

Shar

Deb,
Many times parents understate things because they want to protect their kids. Also they may feel that their children (and we will ALWAYS be their chidren - even at 41 or older) have enough problems in their own lives and don't want to be an additional burden. Very common.

Deliberate lies and deception are something that you should consider working out with a therapist or a cancer caregiver support group.

Deb,

In the last 4 years I have had surgery for renal and oral cancer and my husband has had surgery for colon cancer. In each instance we were slow to give out information to our families and friends. The reasons for this were different in each case. We delayed saying anything until we were certain what action was being taken. It was difficult but we felt that there was no need to get people worked up over an uncertan diagnosis. Until there was a definite date for surgery we only asked for prayers that we should have a good outcome.

Fear of the unknown is a powerful ememy. It was not good that you were not prepared for what you saw, but perhaps your father and his wife really did not understand what the physical result of his surgery would be or they were afraid of the possible outcome. He may have told you StageI because until the surgery that is what he believed or wanted to believe. In spite of all the modern diagnostic tests available sometimes until the surgeon goes in there is no way of knowing what will be. With my kidney surgery there was a wait of about an hour or two as tissue had to be biopsied to see if further surgery would be required at that time to remove the entire kidney.

Often, telling someone bad news is more difficult than receiving it. I always tried to downplay or keep bad news from my mother as long as possible. Even when her mother's instinct told her something was wrong I tried to lower the severity of the problem.

As you are concerned about the possibility of genetic transmission of oral cancer please research it on this site (both on the forum and on the general website). It would be good for you to either write a letter to your father's doctor or make an appointment to discuss this with him or with a physician you trust. Also post a question to members asking if anyone has been told that genetics was a factor in their diagnosis.

Best wishes to bothyou and to your father, Malka

Dear Deb,
You said:

I was prepared to see my dad for a minute with a trach, a respirator, drain tubes, etc..., but I was not prepared for the unbandaged radical neck dissection. How could he do that to me???

First, the neck dissection, although it looks like hell, was probably the easiest and least painful part of the surgery for him. Second, I suspect neither your Dad or your mother probably had any idea how bad it was going to look or they might have warned you and no, they don't bandage these . I've had two 4 years apart and you can barely see the scars. There will be side effects like build up of lymph fluid in the neck and possible shoulder weakness that will require the help of a physical therapist. Proper massage by PT will also help with the scar to heal. I also used Biafine, a deep wound cream, on the scar to help it heal. Ask doctor about it and when he can use. It can't be used on an open wound.

Being kept out of the loop is not good, but I wouldn't worry about the neck dissection. That's pretty routine especially since he has already had radiation. Here's hoping he doing is well and try not to worry about how the neck looks. The drains, staples and stitches will be gone in a few days.

Take care,
Eileen

I really appreciate everyone's replies today, you have what I need now, the perspective I couldn't see, my dad's as someone who has been through this. Eileen, I'm really grateful to hear that the neck dissection wasn't bad, the fear of the unknown got me on that, I was afraid of what I didn't understand. I've been reading about it on the web, just wish I could have done that prior to the surgery, the surprise was terrible. I sure did blow off steam in my post, I'm grateful to be able to talk about it with you all.

God bless,
Deb

Deb,

As I read over your post and the responses I want you to know first that your Dad really loves you and I know you love him. I also know that speaking strictly as a parent that sometimes our optimism prevents us from telling it all because we want things to be different; to be better before we tell. Unfortunately sometimes things don't get better and we have to face reality. Your father has had a few burdens of his own and none of this was done in any way to cause harm, discomfort, pain or suffering for you. As he battles for his life, his health, his recovery, he certainly is thinking constantly of his love for you. There may be times through this ordeal that his love for you is all that gets him to the next day.

Be thankful that today you have another day with him. Tell him how much you love him and thank him for loving you. People do what they do because they think what they do is the best course of action. I know there are exceptions but generally trust this. Nobody wants others to feel sorry for them or worry about the "what ifs" of life.

Your father is very fortunate that he has you and your love. Look beyond everything else and let your love shine through. There is nothing easy about this disease and your father has certainly not had anything easy for many years now. Clear your mind and bring nothing to him but kind and gentle thoughts when you deliver your abundant love for him to him.

Ed

My 16 year old in particular hates it when she isn't told the absolute truth about everything concerning my health. My husband and I have always done just that, but sometimes her older sisters will hold things back because they don't want to scare her.

Have you tried talking to your dads wife about how you feel?
Take care,
Minnie

Deb,

I know exactly how you feel and your post brought back memories of a family meeting that my 2 children, my wife and I had many, many years ago. I don't remember what it was that we had kept from them, but whatever it was, it caused them to sit us down and promise that we (and they) would never keep anything from each other again. From that point in time, we have told them everything and as fas as I know, they have told us everything.

When I was diagnosed with cancer, there was no option. I didn't want to tell them on the phone, so we made arrangments to get together and I told them in person. It wasn't easy, but I told them as much as I knew. There were tears, but it was the right thing to do.

Now that you have vented here and you have gotten it out of your system, I would suggest that you have a heart to heart talk. Tell them how you feel, tell them how much you want (and need) to be a part of his problem and that you understand that he wants to protect you, but you would much rather not be surprised.

I hope you can do this and that they will be accepting of your wishes. I also hope that your dad has a full and complete recovery.

Jerry

I don't know how to fully express the fondness and caring that I feel for each of you. Your kind words and support have carried me these past few days, and I am so happy to have good news to share.

My dad seems to have turned that dark corner. He is doing so well! The flap that was thought to have died is only superficial, and the reconstructive surgeon said yesterday that he thinks he can correct it under local anesthesia as an outpatient in his office. The trach size was reduced yesterday and he was able to talk some. He wrote that he was afraid that he would never walk again. He is now working up to the six laps around the hall per day that they want from him. I call it his walk for coffee! He wants coffee very much! Dr. said a couple more days! Dad also wrote that not being able to communicate for the first couple of days was horrible.

This situation has been compounded by my step mom, who made two horrific scenes in front of my dad, one she directed at me (not unusual), because I was sharing songs that my dad asked for on my sons ipod. She has always been jealous, though I have never understood why. She has a 26 year history of being more awful than Cinderella's step mom. The second scene she made in front of my dad was directed at an RN who was rated top notch at Cleve Clinic. My dad had to deal with this 2 days post surgery. He now openly says that she is mean, jealous, and a bully. Since her second outburst, Dad has finally laid down the law. My step mom will never again be permitted to exclude me from his life and to bully me and my son. We are beginning to have those heart to heart talks that were denied to us prior to the surgery. It breaks my heart, because I so want to bring calm, peaceful energy to my dad to recover fully. I would never have wanted this to happen while he had to deal with his recovery. But it seems to have made him want to fight back! His fighting spirit is alive and well, a spirit I don't think I've seen so strong from him in 26 years. I have to admit it is a blessed relief for me, I believe he will choose to make changes in 2008 to make his life as happy and peaceful as possible. These changes are long over due. I love my dad with all my heart and soul, and after losing my mom 10 years ago to alcoholism, it renews my spirit to have such hope that he and I can have the kind of relationship I have always wanted to have but was denied with him.

You were all right in so many ways, that the drains and stuff would be taken out, the physical wounds will heal, and that love and heart to heart talks will begin to heal the emotional wounds as well. I am so grateful, and relieved. Now I can turn my attention to my son who will turn 18 on Thursday. I have felt so lost and gloomy not knowing how my dad would do through this. Now I feel I can open the curtains, bring in the light and life again to our home. Thanks again to each one of you who helped me through this darkness. I am forever indebted.


Deb

Deb, I'm so glad you are feeling better---so nice a way to start a New Year!
Love really does conquer all I guess, and hold on to these moments if things get tough again, to remind yourself that there is always light, in some form, at the end of every tunnel.
Brenda

Deb,

This is double good news. May your father soon have a complete recovery and may you continue to enjoy the renewed closeness for many years.

Malka

Deb,

It's sad that you and your dad have to deal with ordinary life problems when so much more is important. Usually in the worst of times the selfish tend to stay in the background so hopefully she will calm down and maybe your dad can finally convince her to grow up. JM2Cs

Deb,

Family conflict and cancer that's too much for anyone. I am glad you and your dad are on a good path and I hope that your stepmom sees the light on how calm and peaceful energy shared between loved ones can be very beneficial.

And, I hope you are able to enjoy your son's 18th birthday!

Ok, David, you are too hip for me...what is JM2Cs?

JM2Cs = Just My Two Cents

I spend way too much time in chat and text messaging....lol

Deb, I'm glad you vented here to the understanding people that come here. We all understand and I'm sure they will give you good advice to follow. I don't envy you for going thru this mess but you seem like a strong person and will come to grips with it soon. You are in my prayers as you Dad is. Just don't blame your Dad for doing it and it will help. You have to sorry for him and love him.

Thanks, PharmGirl. I'll be thinking of Deb and her dad and you and yours. Hope all goes well.

EzJim, hope your appointment this week goes well too.

Margaret,

Thanks for sending that COLD weather down here. I woke up to a bone chilling 43 this am and they say it's supposed to be even COLDER tomorrow. I'm moving further south !!! JM2C's..... now that your hipper.

Hello Deb,
Have been thinking about you...sorry to hear that you were so hurt.
Before I forget--make sure that you research lymphedema. My mom's biggest obstacle through everything has been primarily from her neck dissection. Eileen warned me! I just didn't understand Don't get me wrong, the trach, the dissection itself has cleared up beautifully, as I'm sure your dad's will. I just wish that we had started therapy sooner for my mom.