Hi all,

my future FIL ended his rad/chemo treatments a couple weeks ago. he had a minor set back last week with an infection in his mouth. they just found out from the surgeon that reconstruction will not happen for at least 6 months and are very down, to say the least, emotionally. they were expecting it sooner (although i was not). what can i recommend for them to help improve their morale day by day? i am worried about their motivation slipping because there is little to look towards.

my fiance and i have a wedding planned for september and now we don't know if it will be able to happen.

Go for the wedding. That will give more inner feelings of making it thru and put your minds on something else. I was asked 3 times to marry the one I had and kept saying no because I knew I had OC before a biopsy was even done. She left me when it was confirmed and my mistake was saying no to her. Go for the good life and be happy whatever happens. Life is what you make it.

thank you JIm, im sorry that she left you when you needed her most.

there are thoughts of pushing the wedding back a year, but my concern is, we dont know whats going to happen 1 yr from now... i dont want to be selfish, but im also trying to be realistic..... my fiance is concerned about my future FIL feeling uncomfortable at the wedding and not being able to participate and talk...

Social functions will be difficult for a long time for your FIL. While nobody can truly understand what its like unless they themselves have walked out in public after this type of procedure. Its really very very difficult to find joy in daily things when your disfigured. There is only 1 other member of OCF that has undergone similar operations as your FIL and myself and become lets say 'facially challenged'. Im sorry but I dont have any bright ideas to help them be more positive. Getting outside in warmer weather and soaking up a little sunshine helps.

As far as your wedding plans go. In my opinion, I would have to say go on with your plans. You cant put your life on hold because of this. I was in a similar life changing event recently also. My son was going to delay going into the Marines due to my health, he twice delayed his entry with my first and second rounds of OC. This time, I told him to go and make a life for himself. If he waits til I get better then he could be waiting for years. Thats why I say go on with your plans. It will be something your FIL will enjoy and be so proud of. This probably will give him something to look forward to and to strive for to heal. Everybody needs a goal, a purpose in life. This might be exactly what he needs.

Sorry I dont have any other advice to help this situation. Best of luck with your decisions, upcoming marriage, and your FILs recovery.

You're not being selfish at all...I say go for the wedding. I bet if you asked your future FIL about this he wouldn't want you putting your wedding on hold because of him. Life is too short....live it to the fullest!

Shelley

PT:

I think if you cancel the wedding date because of the setback your FIL had, he might end up feeling guilty, and he sure doesn't need that. So, my vote is to "go for the wedding, as planned."

Jim, with that wonderful, jovial personality you have, plus the true feelings you emit in your posts, it's hard to believe anyone wouldn't want to be with you. Perhaps she just wasn't the one.

Julieann

Also voting for the wedding. My husband is the one with OC and I have no doubt he would agree. As parents, there is incredible joy in seeing your kids happy.
Having something to look forward to and celebrate could be good for everyone...

i agree, this is what i thought was the best thing, until i was told yesterday that FIL told fiance if there was a september wedding "he did not think he could go"...
i am not sure if that means he feels he would be too uncomfortable?

thanks everyone for your suggestions and support.

christine, who is the other member that you said has had the similar surgery? is it ezjim?

Not yet I haven't had the jaw removed even tho they want to take the jaw, tongue, lower my stomache back to it's original location in my stomache and do the trach and feeding tube thing. They want to use my left shoulder to rebuild, Christine is one that I look up to with my thinking on doing it. She;s a tough lady for sure.

Julieann,, thanks for the compliment. I don't think so either now after what has replaced me.

Palmtree

As I suspected, your FFIL (future father in law) is really the problem here. You should urge him or your FMIL to join the OCF and its forum so they can get a better grip on understanding that waiting until after reconstructive surgery is no guarantee that FFIL will be able to attend your wedding even if you postpone it a year! You are in a difficult spot here.
Why not let you fiancee read the links on Roger Ebert who did have all the jaw surgery and found out the hard way that sometime the first one doesn't work. Maybe he can share it with his dad. The basic problem is a false assumption that waiting is going to make your FFIL feel better and be more able to deal socially with a wedding. While he may hope for that, it simply does not comport with any experience of surgery I have read about or for that matter undergone myself.
I have a son but cannot understand your FFIL's reluctance. If he were to educate himself, he would urge you to move up the wedding not postpone it. Just my opinion.

Charm

Charm as usual, very good advice.

If I were a future father-in-law, with a similar medical condition, I would not want my son's (or daughter's) wedding -- certainly one of the most important days of his/her life -- be postponed on my account, regardless of how uncomfotable it may be for me to attend their wedding on their planned date. Rather, I would want to see them wed now, while I am still with them.

I have a relative who passed away a few years ago from a late-diagnosis stage 4 pancreatic cancer. She had a boyfriend for a long time and had plans to get married at some point in the future. When they learned about the inevitable, they made arrangements and got married on her death bed in the hospital. She passed away a few days later.

I would have done the same if I were the boyfriend.

Palmtree,

I agree with everyone here that you ought to continue with your wedding plans.

My husband and I are in a similar situation in that we have 2 family weddings (April and September) to attend this year. The concern for my hubby is that having just had his jaw reconstruction in November, he is not sure he will be able to go to these events. The recovery is slow, he has severe pain when he eats, still uses the PEG, and the skin graft is not healing. This jaw recon is probably at least a 2 stage project. We were hoping that the next surgery will be next November but it will likely be scheduled within the next few weeks. His issues need attention now.

We have had the highest expectations with his jaw recon, but there are variables and many of them are unpredictable. So, we do what we can, and live our lives as best as we can. We hope to get to the all the family events but we may miss some. I would never expect my niece or nephew to cancel their special days because we might not be there. I would consider going to the weddings alone. Life goes on and Clark doesn't want me to miss the family gatherings either.

Best wishes as you plan your beautiful wedding.

Anita

thanks all, i dont really think that he expected us to cancel or change our date, in fact he never said that. the message that was relayed to me through my fiance was that he "probably wouldn't be able to attend". im not sure if that statement was made due to feeling uncomfortable and self conscious, or because he felt he would be in the middle of the surgery.

charm, thank you for the link, i will read and share.
thank you all for your advice and relating to what we are going through. it is very helpful!!!

oops, i mis-spoke. charm, i thanked you for non-existant links lol. where is there a link to roger ebert;s writings??? im not familiar with what this is. thanks again for sharing.

Palm,

I became severely disfigured after my reconstructive surgery to replace my jaw. As anyone who's seen my facebook page will tell you, the change was dramatic to say the least. During the surgery to remove the cancerous tissue and replace my rt mandible with my fibula, my rt facial nerve was damaged in the process, leaving that side of my face paralyzed.

I used to consider myself handsome and my career was mostly based on my looks and my speaking abilities, both ruined. I remember walking into a room, fashionably dressed and drawing the attention just by my "command presence". Now as I enter a room I'm gawked at and stared upon for a completely different reason. My children have been ridiculed at school because of my looks...and they are all sorts of good looking.

I'll say that unless you've been in those shoes, it's hard to relate with the emotional pain that's associated with it or how difficult it is to overcome. With that being said, it can be dealt with and overcome, but there has to be understanding and support. I remember early last year when I was just starting to go out in public and attempting to eat (another spectacle altogether) that I was frustrated and upset and didn't want to try anymore.

What helped me were the people on these forums like Christineb, Charm and EZJim that gave me a different perspective on things. Let me know I had others that related to me. Also my wife, friends and family were instrumental as well, for without their love and encouragement I may have lost my center.

It's a tough thing, but when I realized that I was still awesome no matter what I looked like, I got my swagger back...I just needed that reassurance. Have your FFIL get on these boards, or message one of us that have walked that path, it really will help.

Best Wishes,

Eric

thanks eric. im sorry that you went through so much at such a young age. you are only about 10 yrs older than me. you're a wonderful inspiration that life can go on, if u make things happen. and i agree with you that there is a lot of support that is needed.

i am going to try and get my family on this message board and i hope it will help them.

Go the the oral cancer in the news section of the web site, (Navigate there from the OCF home page www.oralcancer.org and you can read the three stories in full on Ebert. You will only have to scan backwards a few from the current stories to find them.

One thought that I had was that you said the reconstruction surgery could be about six months out which if I count correctly would be early September, about the same time as your wedding. I think your fiance should ask for the reason behind the statement, your FIL could be thinking he may still be in the hospital recuperating from the surgery. I know we find it difficult to make plans more than a month or two away with all the uncertainty that comes with treatment.

so, update on the situation, my fiance got more clarification this weekend. FIL would not want to come to the wedding A) because he might be in reconstruction, and B) he would be too self-conscious and would not be able to talk/participate.
fiance wants to get married, as do i, we are ready and want to spend our life together.
fiance feels caught in the middle of me and his parents.
i make comments that i would rather have his dad feel uncomfortable and BE THERE rather than risk the chance that we delay it to an uncertain time and him not know whats going to happen-- and fiance says he cant think this way, even though he acknowledges that it's possible, he wants to believe his dad will be better a year from now and wont plan assuming otherwise.
however, i also just found out that FIL will be attending my fiance's graduation in may (two months from now)- when i asked why he was not too self conscious to attend that, but would the wedding in september, fiance's response was that he thinks the graduation wont be as hard on his dad because he wont know anyone and he wont need to talk- but the wedding he'll know everyone.
this doesnt make sense to me, can anyone relate? i tried to explain that this is a time where he should be leaning on relatives, not shutting them out, these are the people that know him, love him, and accept him for who he is.
i honestly dont know what to do.
i told fiance we need to sit down and have a face to face meeting all together and hear each other out.

Palm,

I have a loved one with anxiety disorder and have run smack dab into this very issue. They can go places where strangers are because they do not worry about how a stranger will Judge them. They have a very difficult time going to events where they know people because those people will judge them and they care about that judgment.

Of course the judgment they fear is always a negative and never a positive. They simply freeze up at social gatherings.

A number of us with OC face what Brian calls "Situational" or short term disorders. This is almost always situational depression that is more often then not short term. I think there are other situational disorders and situational anxiety is probably among them. In short, your FIL is facing situational anxiety regarding how his loved ones and friends will judge his condition. To the outside observer it is an irrational fear, as you say, � these are the people that know him, love him, and accept him for who he is�. To someone with severe anxiety, these are the people they fear seeing the most.

I know how frustrated you are, the solution to your FIL�s unease is not something you can rationalize with logic. This is an emotional condition so try and recognize the fear aspect. It may help your perception in a sit down.

FYI: I have found that showing how frustrated you are with the fact that their fear is not logical is very upsetting to them as they see that fear as perfectly logical. Stay Calm.

It may not be easy to do but what about moving the wedding up to eliminate any problems being around the reconstruction?

we cant move the wedding up because we've already put several deposits down at our venue which is extremely popular and we got one of the only dates left for teh whole year with our date.

the issue really is no longer about issues round reconstruction, more so being self conscious.

kelly, i appreciate your insight to social anxiety. i was a psychology major in college so i do understand what you are saying. i know that my frustration wont help so i do need to remain calm. how can i help them get over this? does it just take time?

Perhaps you can keep going with all your plans as scheduled and when the time comes if he wants to attend, terrific, but if not, that decision should be respected. Your FIL will come to terms and adapt to the major changes when he is ready. As long as he knows that he has support from family, and if he should need it from a professional he is aware that that is also available to him, in time he will be able to deal with everything.

After treatment, I chose not to attend a family wedding because I just wasn't feeling good about myself and would have felt uncomfortable for several reasons. Everyone in my family accepted and totally supported my decision and never questioned it.


Karen

thanks Karen. i would suppport his decision if he felt he could not attend.
what im trying to come to grips with is them thinking we are postponing it, which i do not want to do.

You sound like a very caring daughter in law to be.

My suggestion would be to sit down and talk with him and share all the wedding arrangements with him and in doing so let him know that whatever his decision will be when the day arrives, you and your fiance will be behind him 110 per cent.

Karen

Come on down to Gulfport. We do weddings at my wife's restaurant and I'll make sure you get your date!

Another suggestion, elope and then have your "wedding" whenever boss dad says it's OK with him. BTW will your hubby to be have to consult with his dad on other things post marriage? Don't mean to sound short but IMO son needs to have a man to man with his pop and tell him this wedding is not about him.

what i am going to suggest to them is that if the time comes and they are too self coonscious to attend, we will go up to where they live and have a private ceremony the day or two afterwards.
its not in my heart to elope or do a private wedding, i've always dreamed of my "big day"...

David:
Gretna Green, Florida Branch?

M

Palm,

My niece is having her wedding at the end of April. Last September, her future MIL was diagnosed with a life threatening illness. As her condition deteriorated, my niece and her fiance decided to get married in a small private ceremony for immediate family only with a luncheon to follow on a Saturday in November. The MIL passed away a few weeks later. Now, she and her husband are having the Wedding in April they have been planning with family, and friends in attendance.

My niece and her husband were very happy that his Mom could be a part of their marriage ceremony.

Just a thought-
Anita

[quote=davidcpa]Another suggestion, elope and then have your "wedding" whenever boss dad says it's OK with him.[/quote]

Har! That's almost exactly what my ex and I did to avoid a controlling mother-in-law. We held a surprise, three-day notice, wedding in a small chapel and then had a reception a month or so later.

well, good news, my fiance and i spoke this weekend and he agreed with me that we should keep our wedding date as is. we are going to speak with his parents this weekend, we told them we want to talk about the wedding, not sure if they know what though... thankyou all for your advice. pray it goes well!!!

Best of luck with your wedding discussions with your future in-laws. I am glad to see you are going ahead with the September wedding..

Go with your wedding plans - if your FIL's want to come they will - you have no control over anyone attending or not attending...all you have control over is the invite list, not the attended list - if the FIL's don't come, make sure you have plenty of pictures made so that you can show it to them AND DO NOT RESENT THEM AT ALL! They are doing the best they can. Jim and were married quietly by the Justice of the Peace and I kept asking shouldn't we have invited his parents - he said, no, because they wouldn't be interested. Jim had never been married before. Since being in this wonderful family, I have learned they did want to attend, but respected Jim's wishes because he was still reeling from the "cancer diagnos" a few weeks earlier. So, go with what makes y'all happy and the rest will fall into place.....Good Luck!
Paula

ahhh ok. we had THE TALK yesterday. it was like ripping off a bandaid- it sucked, but im glad its over, and theyre not happy, but they understand. thanks to all of you who helped me realize this is the right thing to do.

Palm,
I'm in the same situation as FFIL; waiting for surgery and frustrated, depressed, embarrassed by my looks. I force myself to go out with my friends and I'm glad I do because it helps lift my spirits. My suggestion to you would be to make them part of the planning process as much as you can. Give the FIL's something to do; phone calls; having a voice in picking your menu, your flowers, your invitations, etc. I know that being an active part in my family helps keep my mind off what I have to face. It's not easy for him to put this out of his mind but the more often he can get his mind off it the better he'll feel about it. I'm invited to a wedding in July and I probably won't attend because of how I look. People are supposed to be looking at the bride, not the freak side show! I use a peg tube to eat so what does one do at the dinner table while everyone else is eating a wonderful meal? I think if you give him enough to do to make him feel he is participating in your special day, it will be enough for him. Maybe he'd be comfortable sitting in the back of the church after everyone is down the isle. Perhaps you can plan to stop off to see them for an afternoon tea before the reception. There are lots of possibilities to make them feel a real part of your day without having to be there. Talk to your FMIL for ideas; she might know what he'd like. If I think of anything else, I'll let you know.
Pat C

thanks i appreciate all your suggestions patcey. im definitely going to include them in the planning as much as possible.
also we decided that en lieu of favors, we will be making a donation in everyone's name to OCF! we thought that was a great way to show him how important his recovery is to us and donate to a meaningful cause in our lives.

Out of curiosity, where are you in NJ?
What hospital or treatment center does your FIL use?
Patcey 1

FFIL is in syracuse, i am in NJ though.