Not being able to make future plans

Vilma,

Sorry you aren't getting the support you need here. It is a scary topic, and one we all struggle with, I am sure.

I am farther down the cancer road than you are, so my future planning is limited to three to six month chunks, and I go from scan to scan. It was a blow, when I was first diagnosed, to realize that some long term plans I'd had for when I was empty-nester were not going to come to fruition.

I have found that I stay saner when I focus on the near term stuff. But, there is nothing stopping you from continuing on as if you'd never gotten this diagnosis.

Seriously - plan and dream like anyone else. Especially if you are feeling physically well, get out there and do the things you've been dreaming of. Vacation with the kids? Do it. Save for a condo and start looking at some nice ones. Find love!

The only limitations you have at this point are mental. Get out there and have some fun. If this seems too much like tough love, it's not meant that way. I just want to encourage you not to let the cancer steal your joy. There may come a time (years from now), when your cancer will become more intrusive, but that's not today, so don't let it be a thief.

With much care and concern,

Jennifer

Vilma- The first few months post-diagnosis are a shock. You are coping with your whole world being turned upside down, trying to understand everything that is being thrown at you, and starting new treatments, seeing new doctors, and on a roller coaster of what ifs, and how do Is, and What nows?

I will hit my 4 year mark from my de novo diagnosis (stage 4 from the start) this May. It came the same week as my 33rd birthday, and my goal has always been just to make it to 40 and I am still here and I have learned how to manage everything that come my way and you will too. It takes time. In the almost 4 years, I have traveled to some amazing places (a week in Bermuda, 10 days in Hawaii, a week in Jamaica), watched my nephew be born (and now he will be 3 in April), see friends and family get married, work in a very supportive job that I love (and do a lot of volunteer work in the MBC community), and am happily single. After a long day, I like coming home to an empty apartment and not having to deal with anybody else's needs but my own!

I have also learned to take joy in the simple pleasures that most people take for granted; like meeting friends for coffee or brunch, laughing so hard it hurts at an inside joke, Face-timing with my nephew while he rambles on about his day...

Vilma- Carpe Diem....Make the most of the present time and give little thought to the future. That's all we can do as our future is uncertain. When I got my bone mets diagnoses last year, I was in sooo much pain, they wanted to start my radiation the next day. We had plans to take the grandkids to Disneyland. I said no, it has to wait until we're back. The nurse looked at me like I was crazy. I said I'll be damned if I'm letting this cancer ruin our trip. I have a bottle of pain pills. We went and had a blast. So far this month, we've been to Laughlin, camping, and Las Vegas this coming weekend. I just don't make plans too far in the future. Is this all scary? Hell yes. Do I have the occasional breakdown? Yep. If you want to buy a condo, then buy it. If you want a relationship, go for it. Plan that vacation with the kids. You're still alive. You might be alive for quite some time. You can't stop living today because of this damn cancer. Go out there and enjoy your life! As we know, everyday is precious. Don't let this disease rob you of today

Hi Vilma, I echo what the others say! Like JFL, I no longer contribute above my employers match for retirement and I do find myself saying yes to things I’ve wanted to do but put off before (which is a good thing!), but otherwise try to live the same as before. One book that helps guide me is Lean In by Sheryl Sandberg. I know there is some controvery around it and she is primarily talking about the workplace, but the takeaway that really spoke to me (even if I have modified her message for my life!) is to lean into life. That you have no idea what your circumstances will be in a day, week, month, or year. So try not to play “what ifs” or make decisions on what you think your situation may be - because it may play out totally different than what you expect. You can make decisions when you come to them, based on your life at that time. So that helps me when I Find myself hesitating wondering “will I be well enough?” I’ll cross those bridges when i get to them!

Jamie

I've had quite a few trips, including France this summer. My one piece of advice is to take out trip insurance. It may cost up to100$ but 100% refndaable if you find you don't feel like going. I've been on cruises too. I'm no the life of the party anymore, but I'm there. Napa every spring for all 5 years of diagnosis.

Flying Southwest is easy because you can change tickets w/o a big charge. . Also, if you are flying frequently get the TSA 85$ “fast pass".it will cut down your time standing in line which helps fatigue.

Went so much in August and September, had to put myself on house arrest. Just over did.

When you are in the middle of chemo you will probably not feel like big trips and you to watch your white count. My white count never faltered onTaxotere...lucky

Do whatever you feel up to doing. Have as much family time as you can and rest when needed.

One of the first questions my oncologist asks each visit is When is your next trip? He is very encouraging to get out and about.

Good luck with all you are facing.

Vilma. You mentioned that liver mets showed up on your recent scan. I know you have bone mets, too. What meds are you on?

Have

Lung, chest and liver mets and I've been on Ibrance and femara for one year. I also had local treatment for liver mets called y 90. It worked really well.

There is so much information on other threads. The bone Mets thread will be good for you. The How are people doing with liver mets? Is full of so much useful information. The Ibrance thread is helpful, depending on what medicine you are on.

For me, the first few months were the worst. Since then I've learned how to live in the land of MBC

Hi Vilma,

I'm in Victoria, so just across the pond and am a similar age (55). I understand how you are feeling completely. I'm also a planner (spent years as a project manager) and have always leaned towards taking a long term view for my life. I recall really struggling with this issue when I was first diagnosed in 2001. It was very challenging to go from someone who had a clear sense of where they were going to suddenly no longer being able to imagine my future. It took a long time before I began to "plan" again... saving for retirement etc. Then, just over a year ago, the rug was pulled out from under me again.

Having said that I would echo what the others have said. One day at a time. It does get easier and you can continue to plan for the future (perhaps in smaller chunks). I have mets to my lungs, bones and peritoneum. I've had a few hiccups with treatments but overall have been feeling well. I certainly have no intention of giving up. I'm currently renovating my house, working full time and planning a trip to Europe in May. And I'm confident that when this treatment fails there will be another that will allow me to continue living life to it's fullest.

You've found an amazing support group on this site. Don't hesitate to reach out to us when you need a shoulder. For now, sending a virtual hug your way.

Pat

Good Evening:

I just finished up my treatment and I remember when I was newly diagnosed that I felt like I could just plan my life in short increments. That was a reality because I did not know what would happen from appointment to appointment. I was angry and frustrated.

I worked full time, also while taking care of my grandson after school 3 days a week and on Saturdays.

You take one day at a time, one appointment at a time. In between you make plans and enjoy those activities. It is what gets you through the next step, then the next one. Your times of planning will lengthened as you go through this process. You will make friends in waiting rooms. People will be kind and caring. You lean on your "team" You allow yourself to feel everything. Don't hold back. Ask for help. That is still a hard one for me.

I pray for you. Have faith !!

Vilma, relatives and loved ones mean well, but they don't always realize that their efforts can get intrusive. They often don't grasp how unsettled life becomes for us after a diagnosis of mbc.

When I need to assert myself and create boundaries for those times I need space,I found it best to preface my wishes by telling "relative" or "friend" how much I appreciate their well wishes, positive thoughts, prayers, cards and acts of kindness towards me, how loved and cared for it makes me feel and how thankful I am to have them in my life. I am not usually one to go overboard with these kinds of remarks, but I learned that it cushions what I have to say when I turn down requests or invitations to do what I don't feel I want to do.

One thing for sure, since mbc, I stopped doing a lot of what I felt obligated to do. I learned to ask myself "is this what I really feel like I want to do, or am i worried someone won't like me if i say no, or am I doing this out of guilt, ect." I try to do a lot more of what i really want, not live someone else's agenda for my life.

Vilma, I am not sure if this will help you plan your "new" life, but I just bought a home and now planning a 2 month camping trip in August.

After being diagnosed with Stage IV liver mets, the Palliative care nurse suggested that I make small goals, ie, daily walk, weekly dinner out,..then work up to 3 month, then 6 month goals.

I did go through my clothes, made jewelry repairs, cleared out closets, donated books, gave up some volunteer commitments, updated financial documents. Now I am rebuying all that..too funny.

Find your priorities and don't feel guilty about protecting your time.