Is anyone ever afraid to make plans?

[Hopeful]

I too, have developed a phobia about planning for a future that I may not be in. About 3 months out is my comfort zone. Anything further than that, and I add the caveat, "if I am still here, then thus and so." The biggest attitude adjustment I had to make was at diagnosis. My mother is in her '90's, and her side of the family routinely got very close to the century mark. My dad's side, not quite as long, but mid-80's, easily. I was 52 years old, trying to plan for another 48 years or so on the planet. In the space of a few days, that expectation was reduced by 90%. As I am an only child with no children of my own, I don't feel the guilt I think a lot of moms feel about possibly not being around for important events in their children's lives. The one positive thing about my mental state is that I am no longer paranoid about having enough money to live on in old age. I am not exaggerating when I say that this was a big stress factor in my life that is just not there anymore. I still max out my 401(k), as I always have, because I want the $$ available for emergency medical care, should I need it. I am trying to plan to take the special vacations I expected to take once retired, because I no longer have any expectation of actually being able to retire (my original plan was to work full time until age 70). I find myself paying a lot more attention to details in everything I do, wanting to make sure that, if I don't ever get to do what it was I just did again, at least I did my very best on the try I took. I also get a little twinge when I learn to do something new, that I won't get the chance to put the new found knowledge to work another time.

Since I am ER+/PR+, the odds of recurrance stay fairly steady 10, 15 and 20 years out, so, even if I make it that far, I doubt my mental outlook will ever change. However, I think there is a great deal to be said for living in the present. This was always an area where my SO and I differed quite a bit, to my frustration - he doesn't plan 5 minutes ahead, and I would plan for decades! This has helped the two of us to get much more on the same page. Of course, with his mindset, he never worries that I won't be here tomorrow - as long as I am here right this second, all is fine with him.

I am also more willing to take calculated risks than I was in the past; I am now more afraid to miss having tried than I am of trying and failing. From what I've heard, that is how mentally healthy people think, so maybe part of me had to get sick for another part of me to get cured.

What this thread shows is that we all make whatever adjustments we need to to keep on going. Survivors are an adaptable group - that is what MAKES us Survivors.

Hopeful

[Jean]

It is so sad that this disease takes so much from us. In the early days
of dx. I just about gave up all future plans. Let me share that I am a
major planner (I admit I can plan events that will not happen for years)
I crashed very hard and all my plans went by the way side. This lasted
for about a year...and then I realized that as I feared this beast coming
back each day - it was taking away my daily life and I decided I could
not allow that. I did not buy any new cloths the entire first year thinking
why waste money that my family may need. Did not go away on
a vacation - held off on many things. Also I was so busy fighting for
treatment and living in fear that I did not have the best treatment each
day was a battle.

I just became tired of the fear...and I decided that I would live each and
everyday to the fullest. I also had a real shocker learning that some
close friends just could not understand the concern one has after a bc
dx. I was a bit heart broken when a very close friend for over 25 yrs.
really didn't understand. She kept saying, you caught your cancer early
your fine...when she flew into NY for a long weekend with her family
she did not even call me saying that she knew it was a chemo weekend
and didn't want to bother me. I have not spoken to her since, not out
of anger - but from realizing she is not there for me.

I just made up my mind to enjoy the most of each day and to stop
shaking in fear of this cancer coming back. Yes I still think about it
and I am concerned (of course) but I smile once again, I laugh, I enjoy
my son and husband.

We have just returned late last night from a marvelous adirondack vacation. We sailed, snorkled, fished and swam. Also spent time
on a small island - it was heaven on earth. The fresh mountain air,
the clear lake - it was a perfect vacation. As I sat on the beach looking
out onto the lake and moutains I said I plan on coming back here for many
many years.....I say - make plans and do them....take each day and
own it...

I also said a very special prayer on that Island for all of us.

Hugs,
jean

[TriciaK]

Thank you, Kelly, for giving us all so much to think about! You've had some really wonderful answers. My situation is a little different, in that I am 77 years old and have been fighting BC for over 22 years. At first I was in a positive, maybe "denial mode" , even though I had a bilateral mastectomy and my only sibling died of BC that same year. Then 5 years later, with new mets, I realized this was a for-real life threat. My husband and I reluctantly retired from our practice as psychologists, moving to a tiny mountain town to just be together away from the world.and enjoy whatever life we had left together. Retiring didn't really work because people found us and we became involved again in activity and practice, though in a less stressful way. I was NED for 15 years, by then we had moved to a larger town, and "settled in for the rest of our lives" in our dream home. Ha! One of things I've learned is "people make plans and God just chuckles." A CT scan after a heart attack in 2004 showed that the BC was back in my lungs with a vengeance, now her2. My oncologist said I wouldn't have lived 3 months if the BC hadn't been found. So I was given a new lease on life and I am very grateful. After chemo and herceptin for 15 months I am now NED, but now I have two things to choose whether to worry about: (1) being stage 4, her2, and a 3-timer, the cancer could return any time, and (2) now I am also dealing with serious cardiomyopathy and congestive heart failure. I have a choice of worrying about a slower death or a quicker one! So I'm planning my funeral and designating what trinkets go to which of my 9 children, 32 grandchildren or 30 great-grands! I'm actually having fun with that, but I'm also buying new clothes and fixing up whatever I want to in the new house we moved into 10 months ago (in a wonderful little city in a different state). My husband and I enjoy life to the fullest---we've never been closer. We visit our extended family whenever we please. Yes, there are some really bad days, but life is too short to dwell on them! I believe beyond doubt in a wonderful hereafter. I've had some very special dreams or visions and experiences to strengthen that belief. But I am in no hurry to go there yet! The point made that no one knows if they have a tomorrow is true, and we have all been blessed with the opportunity to face our own mortality and decide to live life to the fullest. This wonderful web site gives us friends who truly understand. We love each other and pray for each other, we empathise and share experiences in a way that is a very real blessing. Some one once said "The only thing we have to fear is fear itself." Fear robs us of faith if we let it. Fear and faith cannot co-exist. It is my prayer that we can each face life with faith and find joy and meaning wherever and however we can. I know many of you have young children to raise, and fear of leaving them, but the legacy you can give them of living with faith and joy in every day is a great legacy, no matter how many years you are with them. How you live your life is their inspiration and example. Sorry this is so long and please forgive my soapbox oration, but I believe strongly in what I am saying and my love and prayers go out to you that you will find peace and love and joy in every day. Hugs, Tricia

[sadie]

I also have many days when I am very indecisive because I don't know what the future holds. Even re-decorating my house (which I used to love!) is a challenge for me. I want to re-decorate to my own tastes, but then I hesitate because deep down I am thinking "decorate to prepare to put the house on the market" just in case.
I also used to love shopping for certain types of clothes. Now, I've gained so much weight with my treatments and am having a very hard time getting the weight off, that I hate ANY kind of clothes shopping.
I used to be very active, but my legs & feet hurt so much somtimes, that I cannot do alot of the things that I used to do. I used to clean my house weekly (and loved the feeling afterward); now I'm lucky if I clean once a month! In a way, that makes it even more depressing, because I'm always thinking about everything that needs to be done, and it seems so overwhelming. It's a vicious circle.
I'm glad to hear that I am not the only one who is having a problem "moving on". I am due for my yearly physical next month and once again, I am getting super nervous. October will be 2 years since my diagnosis. It brings back all the initial feelings. Last year, I was a nervous wreck until Christmas when I finally had all of my annual test results come back ok. The Christmas season will probably never be the exciting, happy time that it used to be for me.
I also feel like everyone in my family looks at me like a ticking time-bomb.
("When will she get a re-occurence?"). I wish I could put it all behind me, but I'm afraid I will jinx myself the day that I finally am able to move on and not worry about it coming back.
Does that make sense?
Glad I found this site to release some of this tension I am feeling.
Thank you.
Sadie

[SusanV]

I have just celebrated my one year cancerversary on 08/03/07....and I don't post much anymore, but check in now and again to read how everyone is doing. I was so moved by this thread, that I had to add my thoughts.

About 6 months after my DX I made a decision to turn my back on cancer the best I could and step back into my life. Don't get me wrong, every three weeks as I sit in the treatment room for my Herceptin, I am forced to think of nothing but cancer....but otherwise I am moving on with all my might.

As for planning...I have told all of my friends and loved ones that I have entered into what I affectionatley have called my "Reckless Abandon Run with Scissors Period" I have told them that it will last at least one year. I am letting go of the plans and reviewing my life's "TO DO" list. I am checking them off one by one...This summer I went on a vacation to Riviera Mya...then went by myself to UTAH to visit a close friend. I jumped off a 30 Foot Cliff in Mexico into a Cenote of 50 feet of water..I rode on the back of a Harley for the first time in my life in Utah, and then I came home and bought my dream car (A volvo). My thoughts about the plans that I am afraid to make or commit to is...IF NOT NOW WHEN ? when will that perfect time be to do all the things I want to do? None of us have the luxury of knowing when it is our "time" to go. In the meantime I am making as many plans as possible..to live each day to the fullest. I really feel fortunate to have taken on this mindset...I hope I never go back to the old me that would carefully over-analyze each decision in my life to the point that I often did nothing. Not any more...For me it is time to RUN WITH SCISSORS FOR AWHILE !

wishing all of you LOVE

[Believe51]

My husband and I were always very busy and had to always make time for things. Our needs are simple right now, I just want him to conquer this disease just long enough to know what NED feels like. We are going away on September 7, it will be his one year cancerversary and we need it to be a happy time, especially since his prognosis was not all that great at dx!!

That is the only plan we have right now. If he feels well, we go out (even if I am not into leaving the house!!). As for other plans, we do not make many anymore and I am still trying to get used to that. Sometimes I want to make plans or a surprise but do not want him to feel obligated to go or sad that he cannot.

How is this for our next plan??: The next plan is to meet some of our friends at a meeting with NED!! Again, even that may make him feel bad if he does not follow through, but cancer is very unpredictable and it is not all in his hands!! As for me, I will take him anyway he is and for as long as I can. He will never know how my heart breaks for him that he remain planless in his disorganized world. When he is feeling better, we will be making light plans with no obligations.

My Plan: My plan includes just being able to hold him when I am scared or happy and kiss that cheek as long as possible. I want to achieve that normalcy we so miss and slowly we are regaining. Baby steps right now, but we plan on making plans in the future even though that feeling of fear needs to go.

I am glad you are finally making your own. Like you said if not now, when?? Since cancer came, we have little fear of anything else. Hope you liked the motorcycle ride, nothing like the air flowing through your hair, I really miss the rides. Yes some may say that it is dangerous, but so is crossing the street here! Live for today Lovey...and I too cannot wait to be adventurous again. Keep running with the scissors, enjoy the car and let us know when you are doing the next grande adventure. This weekend we are going on a plane ride with a friend at night, it is that baby step again.

Cannot wait to grow up like you!! Keep Believing>>Believe51

[MJo]

Funny you should ask, although this isn't about planning. I just came from the dentist and need to cap my four front teeth, which are wearing out. The thought ran through my head "is it worth it. What if my cancer recurs. Shouldn't I spend all that money on a trip around the world."

As for planning, I have no trouble with short-term planning. The long term is much fuzzier now than it was before cancer.

[fauxgypsy]

I do know what you mean. As I am sitting here I am just beginning to accept that I may not die of this. To believe in this miracle. I have been listening to my doctor the last few weeks as we discuss all my tests being negative, all the negative pathology reports, girding myself everytime we do a new test, trying not to plan anything. It is very hard to believe that my future might not include cancer. I will always have to live with the thought of recurrance as any survivor will, but this is a far cry from my earlier diagnosis. It is almost as if it I think it will recur if I relax and accept the good news.

I am self-employed (artist and faux finisher) and have been searching my soul about job hunting. I worry that the physical part of my work will be too much after my mastectomy. I am on medicaid now but I worry about insurance and benefits. I wonder if I should try to get back in research. Use my degrees (biology, genetics). I really like having a variable schedule, a certain amount of freedom and I don't know if I could ever be happy in a nine to five position again. I don't want fear to drive me but it is there. So for the next few months I am, at a very good friend's suggestion, trying to let it go. I will finish my herceptin, I will see how my scans are and I will continue to take life one day at a time. My daughter can help me with the faux finish work, hopefully my fine art work will start selling and either way I do not have to make a decision right now. Good luck with your decision.

Leslie

[MCS]

I am so glad we are talking about this. I heard a bit of myself in all of your responses.

Yes. I cannot plan ahead. I have felt the same way about vacations for next year, I'll talk aobut something a month away but that's all. I resisted getting my port out. If I buy a pair of shoes just because; I end up returning out of guilt, who will have to clean up after me. So sometimes it's very depressing. I also lost my job after dx and treatment due to a cleaning up of the department (after working 9 years and long long hours on the carrot of promotions) and now at 51 looking for another job ( good luck right?). Even my mother at 77 can't understand, I really can't tell her that she's been lucky not to get this dreadful illness. I have trouble making dentist appointments- only 6 motnhs ahead. I went to a retina specialist today and told me that my macula spots are soooooo small, they are no concern for another 10 years or so- I suddenly broke in laughter after I left, at the corner light- yeah sure, who cares.

I have discussed this with others in another site and they all have the same issues, bc or or other cancer. You always have the dx, the treatment, etc etc as a ball and chain. It's fear that just as you think this has been managed ( not conquered!) it comes back and laughs at you again. And it was FDR I believe about fear itself. He's right. I'm glad Tricia as a psychologyst commented on this, very comforting

Yes, I think that I am so grateful for another day of health, but I get nostalgic for the naiveness of planning and thinking about the future. I have lost my oomph. If you have young adult children, they cannot understand, and at the same time you try to encourgare them to look ahead on their own lives.

I do try to make today the best but I really sigh when I cannot think of too far ahead. And I try to change but just doesn't work. It's not negative thinking, it's just the way it is, it is the normal.

thank you all for sharing

MCS ( maria)

[MCS]

I am so glad we are talking about this. I heard a bit of myself in all of your responses.

Yes. I cannot plan ahead. I have felt the same way about vacations for next year, I'll talk aobut something a month away but that's all. I resisted getting my port out. If I buy a pair of shoes just because; I end up returning out of guilt, who will have to clean up after me. So sometimes it's very depressing. I also lost my job after dx and treatment due to a cleaning up of the department (after working 9 years and long long hours on the carrot of promotions) and now at 51 looking for another job ( good luck right?). Even my mother at 77 can't understand, I really can't tell her that she's been lucky not to get this dreadful illness. I have trouble making dentist appointments- only 6 motnhs ahead. I went to a retina specialist today and told me that my macula spots are soooooo small, they are no concern for another 10 years or so- I suddenly broke in laughter after I left, at the corner light- yeah sure, who cares.

I have discussed this with others in another site and they all have the same issues, bc or or other cancer. You always have the dx, the treatment, etc etc as a ball and chain. It's fear that just as you think this has been managed ( not conquered!) it comes back and laughs at you again. And it was FDR I believe about fear itself. He's right. I'm glad Tricia as a psychologyst commented on this, very comforting

Yes, I think that I am so grateful for another day of health, but I get nostalgic for the naiveness of planning and thinking about the future. I have lost my oomph. If you have young adult children, they cannot understand, and at the same time you try to encourgare them to look ahead on their own lives.

I do try to make today the best but I really sigh when I cannot think of too far ahead. And I try to change but just doesn't work. It's not negative thinking, it's just the way it is, it is the normal.

thank you all for sharing

MCS ( maria)