I'm quickly making my way through the forum. First an introduction. Then a question about what to expect in treatment (which hasn't begun yet). Now 'coping'. Specifically with how to cope with family, friends and co-workers when you give them the news and even 'how to' give them the news. (Anger and Fear, you'll get your chance soon, I'm sure.)

At first I was going to see my doctors and have my imaging done more or less in secret. My girlfriend (a breast cancer survivor) knew and at the point I needed help getting to and from a biopsy I told my ex-wife and my folks. I was being prepared for the inevitability of my lump turning out to be cancerous but I was waiting for actual confirmation before I informed a wider audience.

Then there were the things going on around me; one kid graduating high school, the other junior high, then they were going on vacation with their mom and her family, then they were attending a family reunion with me and my daughter was turning 18. I didn't want to poop all the parties or rain on parades. So I held my tongue.

But of course the biopsies (:sigh:, it took two) came back with SCC etc. And things needed to be said. So together with my ex we talked to the kids. And I told my family and we told my exes family who are local and with who I'm very close still.

So now - two things. One is a rant and the other I need constructive advice and your experiences on.

Rant. <rant cancelled; too incoherent. My anger needs a time-out. Will start a new thread at some other time. If you like just imagine me holding my hands to my head and screaming Munch-esque>

What did some of you do about that larger circle of friends and acquaintances; the sort that might make up the majority of your Facebook friends and the like? Old classmates, friends-of-friends, distant family, etc. And how did you update even your closest family and friends (the ones you maybe don't see regularly face to face but who you love dearly) as you began treatment and following treatment?

I'm asking because this aspect, which I'm assuming falls under 'coping' does not appeal to me. I sort of feel like I don't want it to be a secret that I'm keeping, but at the same time I don't want to laboriously document things and explain (and explain, and explain). And mostly I don't want to put people in the position where they feel they have to say something or offer me their platitudes. It's a big ball of confusion. Is there a Dear Abby among us who has the rules of etiquette for this?

Paul

Hi Paul,

Sorry you are starting on this journey and glad you found the forum. There are lots of people here who have done this before you and will have great advice along the way. My husband was diagnosed 5 months ago with SCC at age 47 too. Just one practical suggestion is to start a caringbridge.org website. It really helped us keep people informed. You can invite who you want to read it, and then you can make a post as you like and include all the details you want about how things are going. People will then be notified that you made a post, and they can read it and reply if they wish. This kept me from having to tell everyone the same thing over and over. There are privacy setting so you can keep it to just those invited if you prefer. You can also set up a calendar to request help with rides or other things you need. Not sure if you were aware of the site. I know there will be many more suggestions from others as well. Let us know how things are going.

Randi

Paul, not everyone you know or are acquainted with needs to know your medical history. As far as Facebook goes, I would advise against posting too much there. Im not a big fan of the entire world forever knowing every detail of everyone's lives. Take a good look at your friends list. Think of how many of those people you would normally tell personal things to, how many do you even talk to on a weekly basis (besides thru the computer) or monthly? Chance are you are like most of us and have many "friends" that are not much more than a passing acquaintance. Maybe Im just more old-school with my privacy and think a little differently than true Facebook fans do.

I understand what you are going thru. Ive been down that road a few times. People will surprise you when you tell them about your diagnosis. Not all of the people closest to you will remain close, some will run for the hills when the chips are down. Not everyone can mentally handle a patients mortality being questioned. Some people who arent close will become your biggest cheerleaders and be by your side for anything you could ever need. Everyone is different and will surprise you with their reactions. Being diagnosed myself, I know all too well when telling people how it changed their perception of me and how we would interact with each other in the future. This can be a very frustrating time when everyone who is close doesnt seem to "get it", but somehow practical stranger will.

Do one thing to help yourself down the line. When you tell people and they offer their support tell them when the time comes you will let them know what they can do to help. Write down their name and contact info. Make sure whoever is your main caregiver is they know your little black book is full of their back-up helpers. It could be something small like grocery shopping, picking up prescriptions from the pharmacy, driving you to treatment or an appointment, helping out with your family obligations like mowing the lawn or taking the dog to the vet. There are a million small things that all add up to making this journey easier for everyone involved. Dont be too proud to take help that is offered. I was a stubborn one and liked doing everything by myself. It took being practically bedridden before I accepted help from others.

Hang in there!!! We will be here to help guide you thru this.

There are no set rules of etiquette, and do whatever you are comfortable and can live with. I've seen some "How to tell others about Cancer" suggestions either here, elsewhere, maybe ACS, but a quick search will show them, plus many may follow and offer their thoughts.

I believe most people are supportive, although some may not be, and ran into a few of them, and some patients have to be carefull with thier employment as far as benefits, medical etc. It is a buisness after all, and most have some type of employment rights. I always found honesty to be the best policy with your employer. I also found support in people I least expected, even strangers. As time went on, I'm almost 5 years from my original diagnosis, still battling this disease 7x, and many from the start I seldom hear from now, even family, so time is an aspect too.

I was, and still am a private, straight forward guy, and rarely ask for help, not here maybe lol, and did not belong to Facebook or any other internet social or cancer groups, including here until after a year dealing with cancer. If I can count on one hand who I call my friend that's a lot, and like it that way too. As far as work, I was hospitiized for an extensive period, so that took care of business of who telling who what. I only answered to one person, and didn't have to explain much to anyone, never did anyway lol, and there is HIPPA too, but once one person knows, everyone does, usually. If I said anything, it was on a need to know basis or those who were genuinely concerned, visited me.

I hope this helps.

Paul,

So sorry you joined our group, but we are here to support you. I agree with the advice others have given you so far. Facebook is a little too public for me (might as well put an ad in the newspaper). A few of my friends & relatives have used Caring Bridge and that worked out pretty well to kept those on the need to know informed. During some parts of my OC journey, I would send updates to close friends and family via email. I did this also when my mother as well, and in both cases that was a great solution for me.

I also became an OCF volunteer and used my situation to educate others on oral cancer stressing that it could happen to anyone (I had no risk factors), knowing the signs and symptoms, and encouraging regular oral cancer screenings. Yes, early detection does save lives!

Who you tell and when is up to you. Do so as you feel comfortable. Perhaps have a family member send out updates.

Wishing you the best!

At first I felt embarrassed that I had cancer and didn't want to tell ANYONE. Why did I feel embarrassed? Because I had never really been sick a day in my life and I was always preaching to my employees to stop smoking and then I get told I have a 60% chance of living 5 more years from a cancer caused by smoking. That was 8 years ago and that was the only known cause of SSC.

Took a week or so but I got over it and I told all the people I thought needed to know. I told my employees and my wife's employees and I wrote a letter to all my clients. I also told a very few friends and I also told my grown kids which was a BIG MISTAKE unless you don't mind finding out if they are greedy or not, lol

I know this is an older post, but wanted to post a suggestion in hopes that someone may find it useful for them. I also find Facebook to be too public as I didn't want everyone to forever think of me as sick or checking up on me and the majority of my "friends" are acquaintances. I made a list of people I needed and wanted to inform - employees, clients, and close family and friends - I basically asked myself if I would want to know if they had cancer or not. I then emailed or contacted everyone separately so that it was personal. I then created a Facebook group, set to invite only, and invited anyone on the list who had a Facebook account. This made it easier for myself and my husband to keep everyone updated in a more private way.

I also used the private FB page, really was a great way to keep my circle of friends and family informed. Thanks for the post Talim75. I know it might be awhile and not sure if you will even see this, but hoping to hear an update from you Mr Peach.