Hi all - My name is Wendy and I live in Pittsburgh. I am a caregiver to my husband, 43, diagnosed out of the blue with BOT SCC, stage IVa. (non-smoker, HPV questionable). He's currently undergoing radiation, cisplatin and Erbitux treatments. His only surgery was to remove two lymph nodes from his neck (plus a biopsy of the tongue and removal of tonsil as they did the search for the primary).

I could really use some help here. My husband is still firmly in the denial stage of this whole thing and I'm not sure what I can do to help. He refuses to talk about anything on the emotional level. It's all about the practicality of dealing with the cancer. He won't even admit to being afraid! Should I just let him be and hope that he comes around? I'm worried that he is bottling everything up and he's just going to explode. (that's kind of his natural tendency)

I've been reading the posts on this site for several weeks, and all of you are amazing. My husband joined the site but has not used it except to introduce himself and hardly looks at it. He seems he*l bent on dealing with this all by himself.

Sorry, I'm already too wordy and it's my first message.

Thanks in advance for all of your advice and wisdom.

Welcome to OCF Wendy.

Im sorry that your husband is having difficulty in dealing with the emotions that go along with being diagnosed with cancer. Unfortunately I dont have any advice on that subject. Its not easy being told you have cancer. It was difficult for me to accept due to being so independant, it took a while to sink in. I did maintain my 'lets just fix it' attitude. I was used to never asking for help and turned into one who always needed help.

Just know that there are so many wonderful caring people here who will answer your questions and help support you and your husband thru the treatments.

Umm, Wendy, he's male, and that's sometimes the way we are.

We retreat into ourselves and try to work it all out and sometimes we even get annoyed that someone is trying to help -- It's sort of related to the 'asking for directions' stuf.

My advice would be to hug him, tell him you would like to talk about it for your own health when he's ready and then don't bug him about it, but maybe hug him some more.

Meanwhile, YOU are not like him and need to discuss this, as you are already doing here.

Interestingly enough, I was just reading a short article today in this month's issue of Pyschology Today. The title is "Therapy Watch. Bottled Up. When I'm Okay Means I'm Okay". It says:

A recent study found that if someone doesn't immediately express his feelings aftr a potentially traumatizing event, it's more likely to mean that he's resilient than that he's bottling up his emotions unhealthily. Do therapists ever know bettr than a client whether he needs to address a potentially dificult experience? We asked the experts in Pyschology Today's Therapy Directory:

Handing Over the Reins - "I never assume that I know better than they do about their own needs," says Lindsey Steward Plumer of Roseville, CA. "I tell my clients that while they didn't choose to suffer a traume, they get to choose how they deal with it, with whom, and under what circumstances. Part of the healing after a trauma is to become empowered again."

Up a Creek - "We close down after trauma for a good reason: to protect ourselves from overload, which can feel like being in the rapids without an oar," says Jill rosen of Beverly Hills, CA. "Pulling away a defense without another defense in place may cause harm."

Ready When You Are - Amy Daver os Puyallup, WA says "Often the therapist is more aware than th eclint that certain issues are in the way. that doesnt' mean she can or should push. The therapist can invite, though."

In Your Dreams - Aracely Palomares Neeley of Katy, Tx, describes one form of invitation: "A client's parent was <traumatic experience described...edited out here>. I inquired about the client's dreams. It opened the exact can of worms I was looking for."

I hope that some of this helps Wendy. Good luck.

Sabrina

Wendy- My husband is the same way. He only talks about it when I tell him that I need to. He acts as if nothing is happening and sometimes I feel guilty because after all HE is the one fighting for his life. Only once did he say that it is more difficult for me because I will be left with 3 teenagers. I try to take my cues from him and not push. Hang in there. There are many on this board who can help.

Sue

Wendy,

My Bill is an engineer and that is how he faced his diagnosis....divided the problem into smaller parts and made decisions on how to solve each issue. He never broke down and he never acted afraid. He was always willing to talk about options and risks, but never how he was truly feeling. I would, during the early days, just choose my time and talk to him about how I felt...he was receptive to the discussion but it always turned to how to solve the problem..i.e. this is where we are and these are our options and this is what I want to do. Guess it is programmed into the firmware of a male... so I say...open the discussions an let it go where it does...you can't force his emotional side at all. JMHO...Deb

Denial is more than a river in Egypt!

My brother in law swears by it! He had kidney cancer 10 years ago (at the age of 41)& comments that he never would have gotten through everything he did - surgery, etc, if he hadn't denied everything!!!

I have spent some time thinking about this, and in a way it makes sense. Cancer is a thief. If we ignore it and go about our day - it doesn't steal that day. If we get emotional and upset - it has stolen that time in addition to whatever years it may/may not take from us.

An interesting approach!

Donna

Another voice from the male patient population here. After the initial shock of the diagnosis (found accidentally during a cervical fusion operation), I listened to the doctors, asked the relevant questions, and decided on the most aggressive treatment course, which they told me had "excellent" prospects for a cure.

I set goals for myself -- perhaps unreasonable at the time, but nonetheless were my goals:

1. No PEG Tube
2. Drive myself to treatments every day
3. Continue working as long as possible
4. Exercise

I made all of them, and ended up missing only 3 days of work -- when I was in the hospital for the neck dissection.

My other goal was to not let my wife or son see those times when I was really scared. I know I was less successful at this, but I did my damndest, and I still do.

Now, this likely seems very Neanderthal to many, but in my testosterone infected mind, it provided the illusion of control. So long as I could decide the treatment course, and so long as I could take the necessary actions to meet my goals, I felt like I was doing everything I could. I have no control over the results, just the process. I followed every doctor's instruction, with the possible exception of working too much. ;-) It was really tough some days, but getting through it made me feel more in control.

In my world, my wife and son's roles were (and are) far tougher. They don't even have actions to take that can give them the illusion of control. Hence, I tried to do everything to make life seem as normal as possible. Could others possibly construe it as denial? Perhaps. Except for the fact that I was, and am, keenly aware of the possiblity that the whole thing could blow up on me at a moment's notice. We all understand that possibility, but we try to refuse to let our lives be dominated by it. It's possible I could get run over by a bus or killed by an irate co-worker (a more real threat) any day.

When you get right down to it, it boils down to that whole "Viva le Difference" or Mars/Venus thing. Guys are "handlers". If we can take action, we feel better. Again, sometimes it's an illusion, but it's MY illlusion and I will play with it how I see fit! ;-)

Hi Wendy

my husband was more a "what i dont know won't hurt me" type of a guy.For a month he valiently hung on to his GP'S diagnosis of a salivary gland stone.He refused to EVER mention when questioned ,the possibility of cancer,and got furious with me for what he called "gossiping behind his back",as i was always quite open when asked what was wrong with him.When the day came when he could no longer pretend he got drunk,and while under the influence,he offloaded all his feelings in one great deluge.It really was the only time he could ever express his feelings,alcohol loosened his tongue!!!It became clear that he considered cancer his destiny,and he never ever expected to recover and never listened to any of the doctors predictions and statistics.He also never discussed his illness,and hated me talking about it.I became his mouth and his ears,and he just retreated into his own world of acceptance.He went through every treatment protocol handed to him,and i lived on this forum,and used it to dump my hopes,fears and questions.He refused to give the impression of being a victim,and when asked he was always "fine" attempting to carry on his life as if nothing was happening.As his wife this was very very difficult,and my refusal to accept his way of dealing with things did on occasion cause huge rows and long periods of non commuication.

Being a carer is a minefield wendy,and i thanked god every day for having my own personal bomb disposal team here on OCF.

good luck

liz

Wendy,

Another male voice. As you can see by my signature line your husband and I were similar. I also let the fear take a back seat to my determination to defeat this crap. It may have been a naive approach but I also had my wife who did enough worrying for the both of us. I approached my Tx as another task to be completed; a goal to achieve and I expected to be rewarded at the end with a "job well done" mentality.

Bottom line...my wife had to deal with this her way and I had to deal with it my way. And as far as him not interested in this site, believe it or not, seldom do we see both partners posting. It's usually either the patient or the caregiver.

Hi Wendy -
David is sooo right. It is rare to see both patient AND caregiver in here. My husband, who has had several bouts of oral cancer, never goes in here on his own. Sometimes, I will find something of particular interest to him and "copy and paste" it to our email address, and he always reads it, sometimes responding to the poster if he can help. But, I am guilty of keeping bad/sad news from him, because I know he doesn't want to read it anyway. He is doing well right now - he was just told at his check-up Tuesday that everthing looks so good, he can wait 6 months for his next check-up rather than the usual 3 months - so I just keep reading and learning everything I can from the good members of this OCF forum. He has maintained a great attitude all thru these years of surgeries and multitudes of doctors. Each person learns to adapt to how she or he can handle the situation, positively or negatively, and goes with their "comfort" level. Good luck to both of you, Wendy! Warmly, JaneP.

There are so many caring and warm caregivers in here. I wish I would have had one that didn't scare off so easily. THe ones getting the care are lucky to have you all who are caregivers. Good Luck and keep up the good work. I do think it's how you were raised to feel about other people had a lot to do with mine running like a scared rabbit.

Wendy,
It's not just a male reaction. As you see in my signature I have had 3 different cancers in about 5 years. In the same time span my husband had surgery for colon cancer and I was knocked down by a car in a parking lot (only a small bruise on a hip thanks to a thick coat a fat purse.) Each incident caused different reactions, but basically, I did not let fear or anger become part of the picture. I don't belive that I was in denial, rather it was acceptance of the situation. I approached these cancers as OK what's there, what needs to be done, lets do it. I made charts of the appointments, medications, etc. My husband is "medically dense" in the sense that he considers asprin, rubbing alcohol or neosporin can cure almost anything. He listens to what the doctors say and assumes that everything will be fine. I listen to the doctors like a curious child, study those charts on the walls and back of the door and picture exactly which nerve, muscle, cell, etc. will be affected.
It really isn't important who keeps track of what is going on and all the possible outcomes, as long as it is done. It is always OK to worry as long as the worrying is productive. Questions about treatment, medications, timelines, aftereffects, possible problems, therapies, etc. are legitimate.

Acceptance of the situation is key. I'm still trying to master that behavior. I think it's crazy that my husband has a better attitude than I do about this disease. He is so willing to try everything and doesn't get emotional about it. He just keeps doing what he has to to survive.

When I have a Dr appt. , I read everything on the walls, behind the door and what's on the table. My cardiologist told me I was the only patient to read and the question him about what I read. He thinkd it's great and wishes all of his patients read and asked more. LOL I'm just nosey and curious. I like some of the models. A person can learn a lot while waiting.

Wendy,
My husband doesn't talk about his feelings AT ALL! The men on this site have given you some really good "testerone insight"..just love him, be there for him and don't look to him to support you emotionally as he needs all of his energy to support himself...look to this site to help you for that....

Be sure and take care of yourself....

Paula