[Sandy in Silicon Valley]

Hi, Mary -

I sure do hear you - about your frustration with your misdiagnosis at the beginning, about being fed up with friends who bail or just aren't appropriate in response to your diagnosis and treatment and fears, about being thankful for the supports you do have, and about wanting to be present in where you are & what your health status is day to day.

The major way our responses are different (and every one of us is unique in how we deal with this) is that I'm a control freak of sorts, and I don't want to leave the future of my care in my oncologist's power, whatever my dx/tx status. But that's a minor issue, compared to the rest of our common experiences, I think.

In fact, two out of three of my daughters don't want to make any allowances for me because I have Stage IV cancer and am undergoing a panoply of treatments to maintain as much quality and quantity of life as I can. They're grown, and have their own lives, and if we're playing on different fields/ different teams for a while, oh well. Like you wrote, I've got to do what I've got to do. They can like it or lump it, but at this point, I'm not about to turn myself inside out to be the accomodating, accepting "mommy" they expect/want me to be.

About 6 months after my bcmets diagnosis, and the first round of treatments, I got very depressed, and pretty anti-social as well. It just seemed like nobody - including my husband, who is a good guy, but a geek & not very in touch with his or anybody else's feelings - could understand how I felt or encourage me to talk about what I wanted to discuss. Online support became a lifeline - in the threads that were brought up, many times I could read about someone going through, or feeling, something that I could genuinely relate to, plus I got a huge amount of information that I could actually understand - not medical jargon.

Unfortunately, after about 3 months of hiding out and being p.o.'d with everything and everyone, especially disliking my own NOT NORMAL self, I became very morose, and started imagining commiting suicide as an improvement on how lousy, lacking any enthusiasm, angry at the world, I felt most days. I imagined driving off an expressway overpass I traveled everyday coming home from work. That really scared me! I also wasn't sleeping well, woke up at 2-3am, wide awake and needing to get out of bed and do something - which left me extremely tired when I was at work.

So I searched around for a well-respected psychiatrist, got my anti-depressant meds (I'd been taking since about 7 years after my initial Stage II diagnosis) changed to something that was also anti-anxiety, and settled, very reluctantly, for the "new normal" that my life had become.

The psychiatrist taught me some useful self-hypnosis- type exercises to get more relaxed and sleepy, when I woke up before dawn, and most nights, I was able to fall back to sleep. Over time, I shed some old friends who just couldn't "get it", rediscovered others who'd never abandonned me - and if they seemed insensitive sometimes, I let them know. They may have kept at a safe distance, while I was in major funk mode, but they were willing to meet me half way, once I was feeling somewhat sociable again. I recently joined a live support group as well, and have made new friends who are dealing with metastasized breast cancer and the different issues that pop up when there's not even any hope of a "cure".

It sounds to me like you're making a steady adjustment to your own "new normal". Leaving your bc care in your doc's hands, if you trust her/him, is a great way to not have to think about having bc all the time.

Reading and writing to other women who've experienced one or another aspect of what you're going through (like on this and other support group forums) are also great ways to feel "normal" and validated. Maybe you'd like a "live" support group, if there's one in your locale.

Returning to engage with as many of the people, activities, and goals that you had before your dx can be another way to get on with living. If your treatment has left you with some limitations - even if it's about not having the patience to deal with insensitive people - then finding some new/ replacement friends, activities & goals may infuse more enthusiasm and enjoyment of day-to-day life into how you live.

A combination of strategies has helped me come to some self-awareness of what I need for me to function optimally, when the disease isn't front-and-center in my life. When tests and treatment are necessary, I give my "normal" activities over to dealing with whatever is necessary, knowing that's temporary.

I wish there were a list of all the different ways that different women have found to cope and regain a sense of themselves - then anyone struggling with identifying who she is and what she wants from life could pick and choose among the list, try out different suggestions, and move on. But I think that the list would be as broad and varied as the women represented on this forum, and that number of choices could easily get overwhelming.

Since your post indicates that you've already determined some of what you want and how you're going to get it, I think you're quite well along in finding out who you are, and how interesting and cool life can be, after a bc dx. Wishing you much success and satisfaction carrying on from here on out...

(((hugs)))
Sandy in Silicon Valley