Feeling in limbo

Yes. How do I deal with it? I just keep tromping along and assume that I will until I can't.

My cancer is currently in remission, but I've been on this forum long enough to know it could return with a vengeance. I will not allow uncertainty about the future to affect my life any more than this stupid disease already has. It's a constant battle to keep the "what if" thoughts under control, but you must work at it so you can live.

Don't give cancer any more of your time than you must. Make a list of all you want to do/ accomplish/enjoy and prioritize it. Eight years ago, when I learned my cancer had metastisized after years of dormancy, I sat down with my partner and made a list of all the places we wanted to travel. I found that list the other day and was happy to see we had visited many of them, spending a good two weeks in each. Each trip was glorious in its own way.

Plan, yes. But don't put off what you want to do most.

Tina

I feel the same sense of limbo and I’m still trying to figure it out myself. Hopefully others will come along with good tips for us all. I’m 40 and cashed out my retirement fund and booked a family trip to Hawaii at Christmas and a spring break trip to Florida. I paid off my car, too. But I still have a bulk of the fund for some future planning, it gives me something to look forward to. But I’m also realistic and know I’m unlikely to see my kids graduate or get married. So I’m focused on enjoying the people they are now and keep my planning shorter in range.

I totally understand! And I keep flip flopping as well. I am 40, and things are under control at the moment, but as other people say, you never know. I am optimistic about myself and the future of science, so I still contribute a little to my 401k (although I did decrease it after my diagnosis). I have tried to make travel and entertainment more of a priority, but I still work part-time...it makes me feel normal. I have a young child, so I just think that whatever I choose, I hope it benefits her (either with fun travel now or possible financial help in the future). Instead of being in limbo, maybe you (we) are just more "balanced?"

Keepmewell, for a long, long time I struggled with the same things as you. I operate so much better with certainty but it's hard to come by with an mbc diagnosis.

Then I found this quote from Tony Schwartz:" Let go of certainty. The opposite isn't uncertainty. It's openness, curiosity."

So I practice openmindedness. You could live long or maybe not but at this point, don't try to predict an outcome. Be open to any possibility and learn to live in that mindset.

I agree with Tina, take some time to write down what is important to you, things you want to do, ect. Then prioritize. You don't have to go all gangbusters, blowing the bank, but push the limits of your comfort zone a bit. Do the top thing on your list. Enjoy the fullness of it. Don't worry about the next thing yet. Immerse yourself in that one thing. Then go to the next thing and proceed and experience it.

I had a full life before bc but still wanted to see the Grand Canyon, NYC and Mt Rushmore. There were closer day trips to places near me I'd always put off doing. A little at a time, I made plans and did these things and so much more. This took place over years, not all in one fell swoop. I still worked part time for a few years, spent quality time with my son and took up a few new hobbies like genealogy and coin collecting. In time, I tackled some home improvements. I even had a plastic surgeon remove 3 moles on my face and felt immediately more attractive and I liked that feeling! I absorbed the fun and the challenges along the way and didn't rush through to get to the next thing.

So chunk it down into smaller, doable parts. Don't go from A to Z. Go from A to B. Then go from B to C, C to D and so on. One step at a time. Treat yourself to the #1 & 2 things on your list, then assess how you feel and move forward and decide your next course of action. You'll develop a rhythm and approach that works for you.

I've been at this almost 9 years and am more content these days with simpler plans but very very happy with my travels and time spent.

Amen, oh Divine One!

Tina

I have also changed my priorities. I used to be a workaholic. I lost all interest in work once I was diagnosed with stage 4. I ended up quiting my job, signed up for disability, and I draw a monthly check from my IRA. We plan a trip almost every month. Some are just weekend getaways and some are 1-2 weeks long. I think more about making memories with friends and family than about material things now.

You really have to decide what makes you happy and then go for it.

very striking

I can relate to "in limbo" things in some aspects. Mostly I am in shock though rather than in limbo - just been diagnosed a couple of months ago. Still work and hope I will for a long time - disability income would be living on a breadline and I love my job.

I’m cultivating the “don’t wait” philosophy. I am still fiscally responsible- but, less so. I make much more effort to see the kids or invite them along or pay for something without worrying about whether it “makes sense”.

At the beginning I was afraid to make future plans. What if I can’t fulfill my promise to go to Japan with them next year? Well, if anyone drops dead from a heart attack they won’t be going either and no one will blame them - so I worry about it less. I also haven’t told many people about my cancer- fewer people to judge me for whatever i do.

Enjoy !

Devine- I think you have hit on what is the problem- being careful and selfless for so many years is hard to unlearn. Sometimes you just have to plunge in.

The funny part is I love spending money on DH who always says he doesn’t need it - but, he thinks I deserve all sorts of things - maybe we all have a lot of these issues- we just feel like we need to push the timeline on what we want due to the BC.

Hi keepmewell,

I am another stage IV long term survivor ((8 years, no progression), though I know I am the exception not the norm. However, 8 years ago I had no idea how things would go. After surgeries, an ugly complication, radiation to my bone met etc., I decided to go back to work and live life the way I wanted. I love my job and feel as if it’s a calling so I’d like to continue working as long as possible, not to mention great health insurance! So, I just carried on as usual. I walked my youngest down the aisle, saw the births of my three grandchildren, traveled, learned to knit and take lots of “me” time. I eat a healthy, balanced diet that includes little meat, but that’s how I ate before bc. If I want a glass of wine or mixed drink, I have one and the same goes for any other treats that some consider off limits to cancer patients. Maybe I am too much of a sybarite, but I decided I was going to enjoy life on my terms whether I lived 8 months or 8 years!

Yes, I feel that strange sense of limbo from time to time and this weird feeling that the clock is just ticking down on progression free times, but I didn’t want to spend all of my time on various “protocols”, regimens etc. or chasing down the latest supplements and substances said to cure cancer. I just didn’t want my life to revolve around breast cancer.

Now, I am not recommending this to anyone and I certainly won’t claim that my rather indolent attitude is what has kept me NED because I have no idea if this is true. What I will say is that we each have to find the path that we can live with so we can enjoy life, however long or short it may be. Stage IV is a real trip for all of us and there is no one way to cope. Find what works for you.

I should add that my decisions may have been different if I had young children and that my bone met, like my breast tumor was a lazy grade 1. I don’t know what the future holds, but I have had 8 pretty darn good years and if I die tomorrow not a single regret. All the best