I'm turning into a mega poster. Forgive me. Another question I have. We made it a point to not tell anyone until I had a confirmed diagnosis, Stage IV, which was on Wednesday. So not a lot of time has passed (it's only been two days now). My husband, has had the delicate task of talking to my family and his. Without going into too many details about how whacky either side of the family is, I've pretty much not spoken to them myself. Both my parents and the inlaws tend to get me upset even in normal circumstances when I'm healthy. It's probably self protective of me not to want to set myself up for any big dramas where someone picks me apart and makes me break down and sob. Truthfully, I haven't broken down emotionally and sobbed it out yet (mainly because it HURTS me physically) but I do not want to have my own mother doing her version of the movie Terms of Endearment. This sounds harsh.

A good friend of mine who dealt with a spouse who had cancer told me flat out that I am calling the shots here as to who I want to see and who I don't. I have a choice in who I want to deal with and who I don't. Thus far, I've had the capacity to try to calm down my dearest closest friends. When I tell them I have cancer, people just fall apart. Like I originally did, when I give them details about the type, location and staging, they go out on the internet and look for information to educate themselves and freak out. To be quite honest, until I found this forum and website, I pretty much thought it was hopeless too. One of the many reasons I'm using a different screenname than I usually do. For all I know, people close to me MIGHT figure out this is me posting and be offended that I might not have the energy or need for their company.

Let's face it, I'm ill--seriously ill, it's going to take all my energy to deal with my priorities here. I'm already in real physical pain and I haven't even begun treatment yet. This website has been a wonderful place for information, I've read literally everything on it. My friends, unlike my relatives (perhaps because they are use to my humor and the fact I don't have to censor my thoughts and words)uplift me even when we are talking about the blunt realities.

I know folks related to me are probably hurt that I don't want to lay it all on the line. My husband has been a wonderful buffer in that respect. He plans to keep them informed, as they should be, but I know someone is going to lay a guilt trip on me for not allowing them to act out their own agenda.

Seriously, my emotionally level has been amazing considering the stress and anxiety I had before diagnosis. The more answers I do get (even the not so good ones)help me quell the horror of what I'm facing and put me in charge of my own illness and possible future, whatever that may be.

I need to keep my head calm (one of the many reasons, I'm only using the tranquilizers and pain meds when absolutely necessary) I shouldn't feel the need to dance to someone elses drum beat should I? I'm already carrying a full load of emotional baggage without having to deal with what someone else wants to "get off their chest"?

Before I start sounding so harsh, I haven't told anyone yet to bug off. Sooner or later either I or my little family may need some help, I realize that. I also realize that I don't need some well intentioned relative from either side setting up camp in my house picking on me and scolding me like a small child. There is a legitimate need to avoid getting angry or pushing me to an emotional crisis that may be even more dangerous at this point for my health.

Even if you all don't respond. I thank you for listening to my concerns as people who have already been there and done it. Despite our commonalities all our situations are different, but perhaps someone out there can relate (pun, not intended)

Jen

Your friend is right, Jen

YOU are in charge of your illness and if you need to distance yourself from outside distraction then do it.

When I was ill I needed to concentrate on each day quietly and mostly silently. Well, it hurt to talk anyway.

You are doing so well Jen. Love and light from Helen

Hi Jen
Well it took me months to say I had Cancer, I talked about funny cells, problems, but it took me a long time to say "I have Cancer"
So you make the agenda, you call the shots, don't even let the Doc's push you, make space and control your world.
Sunshine... love and hugs
Helen

Jen,

When I went into the hospital, my friend John set up an email list of key people. Inner circle, mostly, with a few others who expressed a desire to know what was going on. Each day, he checked with my wife (a big help to her, being able to unload) then blasted out an email to the group. Nobody bothered me, and (this is important) nobody bothered my wife. She could call anyone she wanted to, so could I, but neither of us had to take a call we couldn't handle.

I think it worked pretty well.

Ken

Jen,
You're probalby still digesting all the new information being thrown at you. In time, you may feel more like communicating with family. My husband wouldn't let me tell anyone about his diagnosis for about a week or so. He needed time to process it all without people reacting to the very scary news.

I know this is a really hard time for you and your husband. I think the period immediately after diagnosis was almost worst than treatment time - just because of the huge anxiety factor.

Anita

Jen,

I was 41 when I was diagnosed, unmarried with no kids, but a dental hygienist, so I has some professional knowledge and I work in the field and have contact with over 150 dental professionals every month. Talk about wanting to insulate myself! I also have a huge family and I put my sister in charge -- she had the list of my friends to call. My family made their own phone tree. People only came to visit if I asked them to. I turned off my voice mail and responded to e-mail when I felt like it. I did get literally hundreds of cards and letters in the mail which was nice. I can tell you that everyone basically understood that I had to deal with this illness my way -- some didn't like it but they understood.

The bottom line is stick to your guns and do what works for you -- this is about you -- not your mom. My mom wanted to take me to her house to recover. I thanked her for her offer to help but told her that I wanted to stay home for the first few weeks. She did come to stay with me at my home for part of the time and my sisters took turns for the other times. Make a plan that you think is going to make you comfortable -- people who really care about you will do it the way you want.

I am praying for you. I know that this is the scariest time -- you will get through it. We all have. You do have a long road ahead of you but there is life after treatment and somehow it is even sweeter.

Barb

My mom (whom I'm very close with) came from Maine a couple days before my surgery and stayed for 5 weeks, taking care of the kids and helping my husband. She was a Godsend. I also have a best friend that set it up to have dinner delivered to my family for a couple months after my surgery, it was AMAZING. Every night someone would show up at the door with a wonderful dinner for all of us. I also had the never ending help of my three oldest daughters. Family has an amazing way of pulling it together when they are most needed. Give your family a chance, they may surprise you. If not then give them the boot, you have to put you first right now.
Take care,
Minnie

Jen,

YOU are the center of your health and any decisions you want to make should not be of anyone else's concern. Most people that know me expected me to call them when I wanted to talk or tell them anything and generally everybody left me alone, unless I asked otherwise. The key to health and recovery from treatment is to minimize stress in your life. If this means barricading yourself in your bedroom, then so be it. If they try to turn your life into their agenda, tune it out.

This is one time in life that I learned I could communicate proactively and everybody listened! I did not want a lot of extra people hanging out and I tried hard to still fix dinner every night for the family. Unfortunately, for them, when the taste buds went, we all learned (quickly) that I cook from taste, not recipe!

Ed

Jen,

Your original post sounds like you've already got the plan to handle family/friends. My husband is an entertainer and has a huge following via email and his website. Once the "news" got out (we kept it quiet as long as possible, too), we were deluged. I have taken the brunt as, like you, my husband just doesn't feel like talking to each and every person. We both have large families, too, and I immediately made a "friends" group and "family" group in my email contacts. I posted on the website very generalized information on his health and unplugged our phone! For close friends, I sent a little more information via emails; for family, all the details. Of course, they immediately picked up the phone to call -- "it's just me calling" (never considering the other 100 folks who thought the same way). I would again, send out an email and explain that I really didn't have the time or energy to repeat the story verbally every other day to each person. To save my sanity (and job), I had to set them straight -- if I email, it's because I don't have the time nor the energy to call or sit down and talk. I have been extremely blunt with everyone regarding visitors. While I explained the first time that I had to be this way to give us both time to deal with issues and healing and to just have time to breathe, I only explained it once. If they didn't understand, they caught my temper the next time they "dropped by". We have been so fortunate to have great friends and family to support us and they have been overwhelmingly understanding.

But, remember to let your husband know that HE has the right not to be the bearer of news constantly, too. Tell him to set up a method NOW and to stick to it. He needs his strength to help you ... friends and family must understand or they shouldn't even be considered. Each time my husband underwent chemo treatments in hospital, I made sure nurses, floor staff, etc knew NO VISITORS. It is enough to deal with chemo (nausea, etc)without feeling you have to entertain, also. The few that got past the guards were met by me at the door and ushered out very nicely. No one wants "company" when they feel that lousy.

Take care of YOURSELVES. Believe me, your husband needs to know this NOW, too. Rusty & I have been through some tough, tough times this past year and I have reached my emotional and physical limits, too. He has to realize that he has to take care of his needs in order to meet yours. During the worst times, in order to keep my sanity while still trying to work partial days, I have gotten a trusted family member or friend to "sit" with my husband. He really didn't need someone there but I needed someone there to relieve my mind so I could focus on earning an income.

Yall keep your spirits up and don't worry about anyone else. As Ed said, YOU are the center of your health. In this past year, I have dropped a lot of things I used to do that I thought were important or necessary. I had to do this to be more available to help Rusty heal and deal. I don't miss them and they apparently weren't TOO necessary to my life. We went through Hurricane Ivan and, my Type "A" self thought, 'you have to repair everything now!' -- well, I didn't HAVE to and I still HAVEN'T and, you know what, it really isn't that big a deal! I'm working through it at the pace I can deal with and still keep my "duties" with Rusty and my job and myself and things will work out.

I think most people are genuinely concerned and want to help if they can. They don't realize that help can be rest and quiet and time.

Bless you both. Millie

As has been said, the choice is totally yours. The treatment will have a mind of its own. I was unable to communicate very well verbally for quite some time. I set up a Bcc and kept people informed via email and occasional photos. I realized some time into it that it was a gift to allow people to help. My wife needed some respite time away from it and she still had a nervous breakdown post Tx. Don't be surprised if all the help occurs in the beginning while you are still pretty capable of taking care of yourself. People were offering to bring meals while I could still go out to restaurants. People were still offering financial help when we actually had equity credit line left. When we really NEEDED the help, it seems they had all moved on to other things. You'll also find that some people just can't deal with it - they'll actually ask to be taken off of the email list (it's just too close to their own fears of mortality I guess). Forgive them. Then others will step up to the plate who you would never have guessed. Since most of my family has already died (mostly from cancer) all I had was my wife, my extended church family and a few close friends who hung in there with me.

I would suggest simply staying in the "now". Things will happen just as they are supposed to. None of have any control over the future and many times it works out better than we anticipated anyway. This might be the beginning of huge growth and healing in your family if you are open minded and allow it.

My wife and I have a closeness that we never enjoyed before. This phenomena has occured to many here. The diseases gift is that it realigns your priorities. Things that bothered you before are no longer of any consequence. It will desensitize you to the trivial.