Dealing with an Uncertain Future

Hi MetaTastic,

I know it's tough to plan for the future. There are women out there that have been living with MBC for 15 or more years. So there is hope that you could be one of those women.

I retired early and I'm glad I put so much away in my 401k because now I don't have to worry about running out of money if I happen to be one of those lucky few.

Welcome MetaTastic40. Yes, bone only (no organ involvement) has a longer life span. I have a friend that is bone only and in year 8 and doing well on Arimidex only-- no targeted therapy. Then we read on here of others that progress quite quickly. Everyone is different.

I think the thought of retirement really depends on your job/career. I retired last Dec 2019 at the age of 49. But I had a career with long hours--12 hour shifts-- and heavy lifting. I couldn't really change positions in the company. Also, I had a pretty inflexible job concerning being off work for doc appts, scans, etc. And we could only have 5 sick days a year without being fired. I was at this company for 26 years. I hated to find another job with another company, be the low man on the totem pole, and tell them "Hey I have MBC". So, I filed for Social Security Disability--was accepted in 9 days-- and now I tell people I am retired from my lifelong career and that I have Stage 4 cancer. I live alone too and I live pretty frugal, so I can budget pretty good with a limited income. Before Covid, I volunteered a couple of places to keep as busy as I wanted to be. But that is on hold for now--- with my immunocompromised status and Covid in my area.

Hope telling my story helps you. Any questions, just ask.

Welcome MetaTastic (Great username, by the way!)!

We are so sorry for the reasons that bring you here, but we're so glad you've found us. As you can already see, our Community is a very helpful source of information, advice, encouragement, and support -- we're all here for you!

You've definitely come to the right place to talk with others who "get it"; so don't be a stranger -- come back often, ask lots of questions, and engage fully. You're sure to find a wonderful network here!

Also, while we hope you continue to post on this thread, we wanted to point you to the popular Bone Mets thread, where you can introduce yourself to others with this diagnosis and compare experiences and treatments.

We look forward to seeing you around! Let us know if you need anything at all!

--The Mods

Hi Metatastic40,

I have only been at this stage 4 thing for a couple of years. The first year, I stopped saving for both retirement and short term. The second year, I started the short term saving again but have foregone the retirement saving. I feel well, and am hopeful that I stay this way for a long time, but I am 55 now, 56 in December. I will certainly take early retirement if I am not forced into retirement by the illness. I hope science can keep us alive into our 80's but I am going to spend some of what I have now. I have made provisions for my children which is really the most important thing to me.

This is some harrowing roller coaster we are all on, a real white-knuckler. I often have to force myself to stop, breathe, regroup, and get back to it.

Come on science!

Best,

Stacey

Hello, MetaTastic40, and welcome. We get it! And you can talk about anything here.

Thinking about the future, I find it makes me really sad to compare the future I thought I would have with ... a blank. So I try to look at the moment, the day, or maybe next month, and find the little things that provide meaning, beauty, happiness, and enjoyment. I literally stop and smell the roses. I don’t postpone things if I can help it. And I try to remind myself that my future is unknown, and that "unknown" contains the possibility that it could be good.

One thing I learned about relationships with friends and family, brought to my attention by the social workers in a cancer support group, was that when people who care about each other try too much to protect each other, they can sacrifice closeness. I think it its important to think carefully about each relationship and person, and what they can handle. I have also had to tell people to please give me the privilege of being here for you; just because this is happening to me does not mean that what is happening with you is not important.

Another thing I learned, and this has to do with financial planning, is that having cancer is expensive, even with good insurance. So I think the sooner one budgets for higher health care and related expenses, the less chance of being caught off guard. (Search Financial Toxicity here.) If you have thought of simplifying your life or downsizing your home or expenses, do it sooner rather than later so you can do it on your own terms.

ShetlandPony

(Playing the cancer game for nine years, six of them metastatic.)

Metatastic40, welcome and thank you for the fantastic post. This is one of my biggest concerns. How much time I have really, really gets to me. The pandemic, and now the unhealthy air quality in my area just add to my grim worries. I am older than you at 55 but told my financial planner to consider me to be a 75 year old client vs a 55 year old client. I think I am past the sadness that I don't think I will live until 85 like my parents who are still thriving. I am still working (treatment is working well right now and I feel good). My husband and I had just started our planning for retirement in 10 years. I am still working full time and I struggle with when to "retire". I do like to travel, Covid has, of course put that on hold. I feel like I am living scan to scan. So far the scans have shown that treatment is working well. That gives me hope that I have more years than what "google" tells us. I try not to discuss it too much with friends because they really cant relate and also really worry. I have found great comfort, humor and fantastic info on these message boards. We are here for you!

Illimae brought out some good points I forgot to mention. I kept my life insurance thru the company with the employee rate due to my disability status. I had no problem being accepted for Soc Security Disability--MBC is a qualifier thru the Compassionate Allowance Program-- we are considered terminal. I got my pension, I did not have a 401K.

Everyone has to look at their own situations to see when/if they can retire. The biggie for me is the health insurance. With SSD, we qualify for Medicare after 2 years so you have to figure out your insurance for those 2 years. I kept my company's insurance plan with COBRA. Huge premium but no other option. A little over 1 year and I can get Medicare and save money. Of course, I will need a supplement. Haven't looked at that cost yet.

So retirement depends on your situation-- job and finances. And how you are feeling health wise. And how important your job is--- we have a shorter life span. Did I really want to work till the end. My HR person told me a story about an employee diagnosed with cancer and how he worked until 3 weeks before his death. Like it was something to be proud of. Not me. I was not THAT loyal to the company.

But I am glad I did it. I could not keep up with the pace of my job/career with how I feel now. And with Covid in the mix I am glad I am not having to deal with working in that environment and scared I will catch it.

Good Morning All,

Just one thing I'd like to add. When I was first diagnosed with bone met my Oncologist just kept saying to me, "people can live a long time with breast cancer" and "medicine has come a long way". I wasn't satisfied with that answer so got a second opinion which was basically the same. I asked point blank, "Am I going to die", and the doctor kind of chuckled and said "eventually we're all going to die, but you're not going to die anytime soon". That gave me hope to try as hard as I can to put this disease on the back burner and to try and live as normal a life as I can for as long as I can. It's really hard I know, especially at first to feel hopeful. I also felt as if my life was pretty much over, but I've come to realize it's not. I'd like to believe we all still have a lot of life left and although this treatment can be a pain in the butt, I'm planning on being around for a long time to come. I feel it's really important to try and stay as mentally positive as possible. Whatever it takes to do that is different for everyone, but we all need to try and get there somehow.

Ha - that Zoladex needle is legit. I can't watch needles going in so I always turn my head. Until last month I hadn't ever seen the size of it and then the nurse for whatever reason decided to give me a tour post injection. You could crochet a blanket with that thing!

MetaTastic, Pizza night is a great thing to look forward to! Big or small, I think it helps, especially when statistics get you down. When I was diagnosed, I thought I’d never see 45 but I turned 45 this year, now I’m looking at 50. Also, I started celebrating 1/2 birthdays (45 1/2 was on 8/19), it’s been great, I should have started this before cancer, lol

Sadie’s mom - she is a beauty! Always loved collies (I’m assuming her breed based on her size in pic) but we ended up with golden retrievers, and have 3 right now. One thing the breeds both share - lots of dog hair - LOL

All of these responses are so insightful.

Meta, see yourself as living with metastatic breast cancer and not dying from it. That's an important perspective that even some medical professionals don't grasp. Yes, we must deal with treatments and other realities. Yet we are still capable of living full lives. I've had some of the most wonderful times of my life since being diagnosed with mbc.

There's a famous quote that goes something like: "The opposite of uncertainty isn't certainty, it's open-mindness." Be open to where life is leading you. Like Shetland Pony said: the "future is unknown, and that "unknown" contains the possibility that it could be good".

After the mbc diagnosis 9+ years ago, I re-assessed my life to see what was working, what wasn't and made changes accordingly. I decided I wanted to live a more meaningful life and gradually started eliminating people and activities that didn't fit into that philosophy. It isn't always easy! Life's still complicated. Some things I quit doing back in 2011, like home improvements and flower gardening, I found renewed interest in a few years later. The desire to spend more time with my siblings worked out for awhile and this year I felt a need to pull back some. Life is fluid, and things you do this year may change next year and so on.

I worked for 4 years after diagnosis. It helped me feel engaged in regular life. It was a low-paying job that eventually grew more demanding until I knew it was time to leave. My husband supports us, so my situation is different than yours. But I think if you're not quite sure what to do, continue working while being open to the nudges and information you receive. You weren't sure why you took that call from the financial planner, but maybe it was a nudge from the universe to get you thinking of all your options. That might be all you need to do right now is mull over what direction you want to go in. Decisions don't have to be made immediately. It is okay to allow things to unfold a little at a time. You hear of some people who get such a life-changing diagnosis and immediately quit their jobs, but that's not the right scenario for everyone.

When it comes to spending or saving money, what I've done since mbc is push my spending limit comfort zone somewhat. I don't spend like mad. I've maybe been overly-responsible with money, so I had to give myself permission to spend a bit more than I was used to on trips, concert tickets and even a new vehicle. I haven't regretted any choices I've made so far in that regards.

You mention wanting to practice self-kindness, and that's vitally important! I have been so conditioned by society as a wife, mom and woman to put others' wants and need before my own that sometimes I'm not even aware of what *I* want and need! I have to remind myself that I'm not responsible for making sure others get their needs met, it's up to them! I continually have to remember to ask myself what is it that I'm wanting or needing. It's an ongoing process and sometimes feels unnatural! But it is truly okay to love ourselves and allow ourselves to feel important.

ShetlandPony - I totally missed the CancerLand comment. That's so funny! You should share some of your card ideas. The board game that came to mind first was Chutes and Ladders, which might be apropos, but not as much fun.

Illimae- love the half birthday idea, I'm in. I just passed one, so I think I'll tell dh he owes me a dinner. Lol

Meta - "Been there, done that, regretted it, can't stop doing it anyway, ha!" Yup. That pretty much sums it up! I have learned to 1. check the dates on any articles, because things have changed so much, even in the last few years and 2. take it all with a grain of salt, because if I've learned anything here in this short amount of time, it's that everyone and every cancer is different. So, now it's just data to be considered, not a prophecy. And get that Cancer Magic Eightball in here, we'll clear up all that uncertainty! LOL

I got some good news today - my retirement was approved, so that's one less thing to wait and worry about! My income is about to drop, but not as much as it could have.