It has been 2+ weeks since Clark's jaw reconstruction and today he is very down. I feel so bad for him. He thinks he looks like a freak, he is still in pain and tired of the assortment of meds and their assorted side effects, ie constipation, cotton mouth. He thinks the PS botched the job.

He misses eating and tasting real food. He is doubting his decision to have had the surgery. He is worried about his weight, down a few pounds. To top it all off, he is experiencing urine retention and must use a catheter for a few weeks until his bladder wakes up. He feels old and defeated.

This cancer trip can really bring a person to your knees. Clark is so overwhelmed with the process. I am glad he trusts me enough to express his feelings but I wish I could do more.

Can anyone offer some suggestions? Two days ago I gave him a copy of "The Ten Commandments of Cancer Survival" to read. I think that helped him express some of his frustrations. But I've got to find other ways to help him through this.

How do I help him face this challenge?

Anita

Anita,

Your husband and I have similar experience. During my rt mandiblectomy w/fibular free flap + Neck dissection the right side of my face was paralyzed as a result of the operation.

I too questioned why I had the surgery when after chemo and radiation tx my tumors were below malignent levels. I would do it again in a moment though as it's reduced my chances of a recurrance...even though I'm severly disfigured with severly affected speech.

What helped me was reading books of others who had survived horrible situations and gave up everything to survive...to live on. Viktor Frankle's book "Mans Search for Meaning" helped me immensly, his favorite quote from Nietzche is in my signature...it's what I live by. "Touching the Void" is another great book to read as well.

Most importantly I would get your husband to post on these forums, talk to people he can relate to and that relate to him. If you are, or he is on Facebook you can certainly look me up @ www.facebook.com/eric.statler

add me as a friend and you can view some before and after pics of me to see just how disfiguring this disease can be. It's hard to cope with however I have my "why" to live in my young family. I've also built friendships on this site with some amazing, strong, wonderful survivors and caregivers that have helped me along my path.

Good luck, the caregiver role is the hardest one of all so take care of yourself as well my dear.

Eric

Anita,

My situation is nowhere close to what your husband or Eric has faced/is facing, so I cannot give suggestions on the technical/medical aspect.

I do endorse Eric's suggestion, however, to read books and articles (like those in this site) on cancer survival as these do help a lot, as it did for me.

A specific one that helped me is Lance Armstrong's ebook, "It's Not About the Bike". If you or your husband hasn't read it yet, I will send you a copy if you want one. Lance had his "why" to live and viewed cancer as a part of life where he even made an acronym out of it: Courage, Attitude, Never give up, Curability, Enlightenment, Remembrance of fellow patients.

The ebook, by the way, is not only about Lance the cancer patient/survivor, but also about his mother and wife (then fiance) who formed part of his strength.

Be strong for you and your husband.

Jojo

Hi Anita. I will continue to keep you and Clark in my prayers. I wish I could offer more words of wisdom. I think it would be "not normal" to not feel a little down and depressed after all he has been through. Brighter days are ahead. Tell him "let's just take each day as it comes". John hasn't had surgery but deals with looker older and thinner and not wanting his picture taken any more. This cancer and treatment are brutal and leave a new normal in each of our lives. Hang in there neighbor. Wanda

Thank you Eric, JoJo and Wanda.

We had a follow up with the Oral Maxillofacial team Thursday. They were pleased with Clark's progress but did tell him he has a long way to go. They also said that a year from now when everything has healed, the PS can improve the aesthetics, ie debulking, filling in, and shaping. He isn't allowed to chew yet. Mashed potatoes, ice cream, smoothies, pureed soups are all okay.

Eric-- I am going to pick up the Frankle and "touching the Void" books today. I am a little reluctant to do the Facebook thing. Do you find that you are contacted by people that you really don't want to be in touch with? I worry about overexposure on the net. How do you control that without opening yourself to every curious individual out there?

You are right about caregiving being tough but I can't imagine not being there for Clark. I find it to be one of the most rewarding things I've ever done. I am surrounded by family and friends who are supportive of both of us and who are wonderful listeners when I need an ear.

JoJo--A good friend who had and survived brest cancer gave me Lance Armstrong's book years ago. I also found that to be a testament to the power in the fight. I have since passed it on to others but I'm going to pick up a copy for Clark. Thanks for offering to send me one.

Wanda--Clark and I talked about the "new normal". There is a lot of sadness for the loss of the man Clark's known himself to be. And while he knows that this is better than the alternative, mourning that loss is important. Thanks for your prayers. I love knowing that we are in the same zipcode.

Anita,

Facebook has been a social outlet for me to keep in touch with friends that I'd lost touch with along the way. The beautiful thing about Facebook is that if you accept a friendship request and they turn out to be someone you really don't want to be in contact with anymore...you just hit the delete button.

I get daily uplifting messages from great people there as well as some semblance of social interaction. Due to the massive effects the surgeries have had on my appearance I don't go out in public much and FB is a way to help get that social interaction for me. I use this site to get advice and to talk with people that I relate too, who have walked the path I'm walking down.

Good luck,

Eric

Facebook is a great tool for talking ordinary personal stuff with the friends i have made here over the past three years.I love being able to put faces to names and reading all the day to day junk of life.I am happy to say that i now share with my support team that dragged me through Robs illness and death ,ordinary events like births and weddings and school achievements although i have to say i get a bit lost in the "football frenzy" you americans get so excited about lol.

Erc its way past your bedtime!!!