How do you tell the people around you?

I don't have an answer for this one, but
I'm going to go ahead and write something anyway. I didn't tell a lot of people what I was going through. My work group knew, and my important clients, but mostly because I care deeply about my work, and I wanted them to know it wasn't some trivial little matter keeping me away.

With regard to everyone else, I wasn't all that interested in telling them all about it. In part, because dropping the "C Bomb" is a real buzz kill. People tend to go all to pieces when they hear it. Either that, or they get all avidly interested (think watching a train wreck here), and want to take you out to lunch and have you explain to them in great detail what you are going through. I read a great essay on line about cancer etiquette, from the perspective of a survivor. Most people have none.

The other issue, for me, was that, as I was beginning the journey, I had no idea where it would take me, how difficult it would be, and what the ultimate outcome was going to be. How could I begin to communicate to people, when I couldn't even look it squarely in the eye. So, for most of my circle of acquaintances and casual friends, I said nothing.

Deb

I never had any reservations
I never had any reservations about telling people if I thought they were interested. I suspect it made for some good gossip.
Regards,
John

It's really about what you need
When I had my first surgery, I left it for my boss to tell my staff and team why I was gone. I just wasn't ready to handle all the questions and concern (and I didn't have a lot of answers). Beyond that, I've tried to be upfront about things at work so people know why I may be out for a couple of weeks.

In the rest of my life, I've been very open about it. I started a blog a week after I was diagnosed and new entries end up on my Facebook page and Twitter. THe benefit is that I don't have to have the conversation over and over again; they can just read about it. I've lived all over and have family and friends across the country so it has been a great source of self-expression and a great way to communicate with people My 76-year old mother now hands out my blog link.

You need to have "your story" you want to tell
Let me add that I agree telling people is difficult. People are stunned, don't really know how to react. I've found people expect that I am much sicker than I look (or am) and that I am also helping them process it. To that end, I have found that in every stage of this year, I've needed to figure out how I was going to tell my story. What was I comfortable saying. How was I REALLY feeling about what was going on. Because if I am going to tell the story over and over, I had to be comfortable with the narrative.

You also want to be honest with yourself. I'm basically a "I'm going great" kinda guy, looking at the glass as half full. But I've become comfortable with saying things are just "okay" or "been better." I''ve prepared myself that sometimes I'm going to cry when talking to someone and that their discomfort with that really isn't my burden. I've been amazed at the allies I've found when I've disclosed it to strangers.

Hi Valerie
I found that when I was first told I had NPC cancer I needed to deal with it myself before I was able to tell anyone else. My Wife understood because the doctor informed her while I was still under and she was the one who had to tell me. I still today don’t know where she got the strength from to sit me down and give me the bad news.

We both talked about it and I knew I had to explain it to my children as easy as I could, and while telling them I had cancer I also had to give them hope that I would get through having cancer and be a survivor. It's not easy no matter how you do it, just believe in yourself and keep as positive as you can while telling others about it.

I did find that while going through treatments my faith is what helped me to stay strong and positive. And knowing the prayers of all my family and friends was there also gave me the support I needed to believe in what I was doing was right for me.

I have you in my prayers as well God bless
Tim Hondo

DrMary said:

I emailed
I used email for the folks at work, to tell them about my husband and to warn them that I'd eventually be taking a lot of time off. I had a friend at work that I knew everyone would ask for news, so I kept her updated and let her handle everyone else. I'm not sure how Doug handled it at work, but he'll chime in soon, I hope.

The tough one for us was telling friends. I know the first time I said it out loud, it really got to me (I was explaining to the hockey wives why the guys were taking so long in the locker room that night). Some days, I didn't really want the sympathy (most days, actually) but there were times I was glad everyone around me knew.

Letting everyone know when you are NED is much more fun. . . .

Telling you perhaps more than you wanted
Well, it’s nice to see the lovely wife adding her thoughts here. I had a hockey game last night as usual and so didn’t know she was contributing.

The incident she mentions – our taking a long time to come out of the locker room - was not just because I had told them it had been an honor and a pleasure to play with them but I had cancer and was about to start treatment and wasn’t sure about the future. It also took longer because we had just won a national championship in overtime so the atmosphere was a little more animated than usual. In fact, there wasn’t that much reaction to my news, perhaps because most people were stunned but also this is like an all-star team that comes together to play nationally and I am not as close to all of these guys.

What was more heartbreaking actually was when I told one of my regular groups about it after one of our regular games. Hockey players have a tradition of paying tribute by standing in a group and tapping their sticks on the ice, slowly building up, and when it comes out of the silence of the rink it is truly affecting. (I am tearing up now recalling.) There was also plenty of truly sincere “anything I can do for you, I will” and similar as well from guys I’ve known and competed with and against for a couple of decades.

I informed work carefully, starting with immediate superiors and the owners of the company (it’s small). I found out mid August and had to put off an important trip to Mexico (where I go each month) because of the tonsillectomy surgery. It was only in the recovery from that (which really confirmed the cancer beyond the biopsy) and before the start of rads and chemo that I told the rest of the senior management staff and people who worked most closely with me here and overseas. I worked as long as I could and as much as I could, slowly disappearing from the office as the rads and chemo wore me down and then slowly working less even from home. And a couple of times when things were at their worst, I sent notes to be read for me by them to the staff, that just said that I was alive and OK but not having much fun.

But I was completely honest with them that it was cancer and that, while I was likely to survive, it was not going to be easy for a few months. They were incredibly supportive, including financially. I was back full-time a month after treatment, still weak and sick but I certainly owed this to them.

Telling the kids (all teenagers) was not easy. At first, we did not tell them that it was cancer and waited until after the tonsillectomy and initial recovery, again so that they could see that we could go through much and come back. I think they would have been more scared of the first surgery if they had already known it was cancer. I think that taking it slowly gave them more confidence.

For the rest of the family, we used email and such at first and then started a caringbridge site (dougiebaker) so that people all over the country and the world could see the whole thing. We had over 1700 accesses which was amazing.

I am still pretty upfront and outspoken about it whenever it is relevant. When speaking I have to have water and when eating I have to have more water. If it is obvious, I do say why but I try not to make this my whole defining characteristic. I just say that my recovery is wonderful but there are a few lingering annoyances like the lack of saliva. At the same time, people often ask me – especially in locker rooms – how I first knew and I am a real proselytizer for getting those swollen lymph nodes checked out.

So, this may be more than you wanted but there it is, my story. All in all, it has a pretty happy ending. Doug

ValerieMo said:

Wow! Thanks for all the replies!
I am moved reading all of your replies! Thank you! Originally when the tumor was diagnosed as a presumably benign inverted papilloma, I was okay with a facebook note telling folks I would be having surgery. Now, so many things are happening and happening quickly! I feel positive with all the results, but each day is a new adventure. Tomorrow and Thursday I go for the octreotide scan.

I am an Executive Assistant to a Flag Officer, and so we have a special uniform device that we wear. And at the conference we were at, many people know me, know what I do, and who I work for. I have a colleague pitch hitting for me in my role as EA...we looked like the Wonder Power Twins. And it confused folks to see two of us.

My boss, who is AWESOME, is very conciensious about having my colleague there with me, and absolutely wants to communicate to our community that I am in no way being replaced, nor have I been fired, etc. I am actually very grateful to have the back up support so that I do not feel guilty about stuff at work not getting done.

I also know that my boss and I have developed a close working relationship because I travel with her, etc, etc. And for her to have to say something to our community is going to be a little hard (as she also has welled up in tears telling folks). Because I will be at the hospital for my scans tomorrow and Thursday, it will be evident that I am not there with her when she meets with a large group of our community. It will also be evident that there is someone other than me there wearing the device that says EA. So we decided that she would introduce my colleague and explain that she would be assisting me in my role because I would be out of office for surgery, con-leave, and follow-on medical treatments over the next few months. We all kind of chuckle because we are a bunch of nurses...these words are like red flags. But it is enough for her to have to say...and then my close friends in the audience who know the full details are free to share with those around them.

I'm like many of you that I don't really mind if people want to know. I just don't want to feel like the 12-step kid, "Hi I'm Valerie...and I have cancer." Realistically, this is a phase because folks will find out and then interest will die down (except from those who really care).

I have kept an email string with my family regarding all that has happened (and phone calls, etc). I have emailed peers at the hospital where I will be to let them know. I have talked to other friends face to face. I well up in tears, yet I know I have a great outcome potential. But everything has happened so quickly, and I am scared about having surgery and going under anesthesia. So, I am in my head keeping it very much one day at a time...after all, that is all we are ever given!

Thank you again for all the great replies! I know in the end, even if my boss wells up...it's just a sign of our close working relationship. I would be the same if it were her.

I also appreciate all the comments about "It's about me!" I'm not good at that at all..."me" usually comes after work, hubby, kid 1, kid 2, (did I mention my dissertation work??), etc, etc...I know I need to become much better about "me" and taking care of "me."

You all are great! Thank you! I am so glad to have a place to just write some of my thoughts as I go through all of this. Many hugs to you all!!!!

Valerie

All About You
Valerie....

I know you have tons to do and keep up with....but.

This is one time that it has to be all about you..maybe just not yet, but it will...you'll need every bit of energy and will power to fight this thing, establish your support base now.

Best,
John

ValerieMo said:

Thanks John, you are right!
You are absolutely right! I know part of my issue is identity. I wrap alot up into who I am at work. Kind of vain...okay, probably extremely vain!

But...every day is easier. I finally sent a facebook blast out to let everyone (besides immediate family) know what was going on. Overwhelming doesn't even begin to describe the number of replies from friends near and far...and prayers, lots and lots of prayers!!!

Folks want to help and are uncertain as to how to help. I am learning to let them help.

The count down to surgery...two days away!

Hope you had a wonderful weekend!
Valerie

Thoughts and Prayers....
Only good things your way and mine today....and the next few.

Today is my daughters birthday....

and, I go in for my routine six month CT scan...so a little scanxiety going on for me as well....

It's not so bad actually at the moment, it's the next day or so that it always hits my anxiety button worse.

Chin Up, and Press on.....
John