EndoCa: Strange thoughts coming with approaching surgery date

This has been a rough few weeks since my dx. I have been through all the stages I know you are supposed to go through. Lately I am just kind of maintaining, feeling I am on pause. I don't handle any kind of chaos well... but I was just wondering if anyone else felt the way I feel.

I have been really honest with my family and friend about my dx. Some people say, oh don't worry... they just kind of blow it off. Some are really scared for me mostly due to lack of understanding the dx. But now I regret telling almost everybody about what is happening with me. I have had many people I love say they are coming to hospital the day of my surgery to wait with dh. The thing is, I don't think I want anybody there. I don't know what I am going to hear when I wake up, if it has advanced or maybe I missed a huge bullet and my endometrial ablation a month ago may have burned all that cancer out of me, maybe it's already gone. I can't stand the thought of everyone knowing before me, once the doctor comes out and updates family while I am in recovery. I just have these kind of morbid thoughts I can't get out of my head. Do you remember that movie, Dead Man Walking? In my head I hear people saying, Dead Woman Walking. I have read so much, I know I have really good statistics but I also know the history of my life, and I am always in the minority as statistics go. I just have a lot of really wierd thoughts... And feeling very introverted right now I guess.

I would say that your feelings are quite normal. I didn't tell anyone but my immediate family what was going on. I figured if and when I needed to explain the situation ( which I did) I would do it on my time.
Everyone is different on how they handle this kind of info. Most don't want to think about losing a loved one and so they kind of "brush over it" . I even asked my Mom not to come to the hospital.

Hi sunflower:

Although I told everyone about my dx before my surgery, I only had DH, sister, mom and a very close friend with me at hospital. The doctor only told DH and mom the news after surgery was over (mom because DH has mental disabilities from brain injury and couldn't quite understand it all). They in turn just told the others that I was okay and that the doctors got all the cancer. They didn't go into specifics and I waited until I was ready to tell everyone.

You can talk to your doctor and request that s/he only tell your DH in private and then DH just tell everyone else general terms until you're ready to tell them yourself.

OR you can just tell them all that although you know they want to be there and appreciate their love and support, you would prefer that they not be there because it would cause you too much stress. If they are that concerned, they'll listen.

Hugs.

I know exactly how you're feeling. I big part of me wanted to run and hide -- I did successfully dissuade anyone from visiting me in the hospital except for my parents, who flew in from half way across the country to be with me. My little sister desperately wanted to come -- I had to dissapoint her by admitting that I really didn't want her hovering over me as well. She and my mom are worriers and tend to panic, while my dad is like me -- level headed and stoic to a fault (much more my comfort level).

But I pretty much told anyone who wanted to hear about my diagnosis and surgery. I'm in an executive position and work closely with a large board of trustees and a large staff. I realized quickly that I'd have to spend as much energy managing their expectations as my own! So I decided that being open about it all and maintaining a calm exterior was the best approach, and it worked well. The co-leader of my company, on the other hand, freaked out! Oy. I spent more time calming him down than myself! But I decided that it was all par for the course for someone in my line of work. In an odd way, I think it was for the best. Being up front about it (learning to say the word "cancer" without choking) and maintaining a calm exterior helped me really feel better.

The most important thing is for you to do what you think is best for YOU! Others should understand, but if they don't, do your best to endure their issues -- I think for the most part their intentions are good even if the execution isn't what you'd like.

Keep us posted about how things go. Keep breathing and take time for yourself when you need to! We're here for you!

Dawn, thanks for sharing that. I have also told a lot of people I work with. Some are really good friends... it's just amazing to me how I have completely turned it around in the past few weeks and now I don't really want to talk about it. I feel like I am resigned to the fact that this is going to be more than a stage 1b, as my onco thinks. I am not down really, i just feel like i know it's coming. Trying to make decisions about chemo and radiation that I may never have to make! I drive myself crazy. I'm trying to get my house organized, just in case... trying to get all our bills in order for my dh... I'm sure we all do this stuff but I want to be positive and I want to show grace in this situation, but I can't even seem to feel the same way about this for more than a few days in a row. I think it's crazy that you had to be the one comforting your co-workers, but I find myself doing the same! My son is in the Navy in Guam and all I could think was how to tell him without him completely freaking out. I had even myself convinced that this is just no big deal. But it is. I don't even WANT a hysterectomy. I don't even WANT surgical menopause and have been fighting to keep my remaining ovary for 5 years! I had an ablation b/c I so much didn't want a hysterectomy. Let alone this CANCER. It just honkerblonkes me off really!

PattiO and Viking Princess, thank you for responding. It just helps to vent.

If it helps any, your feelings of frustration and anger are normal. I asked myself why I was so uncomfortable with others' reactions. I think I'm so used to fixing things, solving problems, and being ok that the idea of me burdening or worrying others was really hard for me to handle. I don't like being the center of attention -- I'm used to putting other people in the spotlight (I run a professional theater company). I think I just had to reconcile myself with the idea that I couldn't control this or make it ok for me or for them. Like you, I prepared for the worst and that helped me. I imagined the worst outcome and figured that I could be ok with that.

I think you're doing all of the right things -- it will help ease your mind to have the details and bills in order before your surgery, and it will keep you busy (waiting is SO hard, isn't it?). Soon enough, you'll have the surgery behind you and you can focus on recovery and any further treatment that you need. That will feel much better.

It's ok to let others worry, and to let others pamper you and do things for you. (Another thing that was hard for me to do -- I pride myself on being self-reliant). If you don't want to talk about it, just kindly let people know that. Whatever you say or don't say, some won't understand, and others will.

Venting is good -- vent here as much as you need to. We totally understand and we've been there.

I agree with the others, your feelings and reactions are totally similar to mine, and everybody else's from all the posts I've seen over the past few months.

My gyn made me bring somebody to the appt. when she told me - Getting a call out of the blue with that sort of command was probably more difficult that the actual diagnosis. For some reason, a few other friends happened to call in that morning as I was waiting to go to the appt. The friend who came with me was very level headed and helped by asking good questions (she has run the gamut of fertility treatments, so she was the perfect person to bring.)

Because my friend knew the whole thing, and the ones who called, called back later as I was trying to process it all, the news was then sort of "out". My normal habit is to keep everything private, but it was nice not to have to hide this. I told people when we naturally talked and some people who I didn't talk to until months later seemed a little hurt that I hadn't called them, but hey - they didn't call me either! I just said that it was really hard to process it and stressful to talk about it and they seemed to accept that. It also served as a cue for some that they needed to pay more attention to me - at least a little closer to the amount that I pay to them!

As for all these people coming to the hospital, I think that could be hard on your partner unless he is really comfortable with them. Let him have a say about who can come and tell the others that there is a limit and that you expect to be home really quickly.

I know what you mean about thinking it will all go horribly pear shaped, but, it might be that you've already had your "out of the norm" experience just with the diagnosis alone. Also, my surgeon said it was not that unlikely that I might turn out to be stage 2, but I was only barely stage 1b, so if the doc is saying stage 1b, you are safe to believe that that (or better) is a real probability.

However it goes, in all likely hood, everything will turn out fine. But you will be so happy you cleaned the house!

Lol, isn't it funny how much cleaning the house really does make everything so much better? I've baked zuchinni break and no bake cookies, much to my dh's delight! I'm still working on the house, kinda just doing a little at a time. I'm still tiring easily even from my ablation and laproscope surgery 5 weeks ago... wouldn't think I'd still be tired but it took me 3 weeks to get the fuzzy head to go away from the anesthesia. Anyway, today is a better day