Is anyone ever afraid to make plans?
 

Is anyone ever afraid to make plans for the future, because your worried about recurrance? I seem to be having a lot of difficulty A). feeling motivated to do things and B). taking new risks because of the fear of cancer returning.

I work a very easy part-time job right now, and it has been nice. I have just been offered a chance at a new job that is full time and a little more demanding, but a wonderful find because it is at my children's school, is alot more money, and is just generally a big step up. Before cancer, I would have jumped on it in a second. Now all I can think about is, "would I be able to work this job if cancer came back? Will I feel the same bond that I felt with my current co-workers?" I know (because I have done it now) that I could work the current job if I needed more treatment. I feel "safe" in the current job. The new one seems very scary and I feel so insecure. I know that I have to go on, and live life to the fullest, but I am not that far out from dx, and still feel so unstable.

I notice that I feel this way really about so many things- just change in general, actually. Whether its about looking for a larger home (which we desperately need), making new friends, anything really. I've always been a creature of habit, but it's much worse now.

Is anyone else ever afraid to dream, make decisions, etc. because of what the future may hold?

Love, Kelly

Yes, Kelly, I'm in the same situation. On Tuesday, we're buying a house ten hours away from New York City and I've been low for the last week about that change and also about finishing my herceptin treatment this week. I believe we've built up a sense of false security and are afraid of losing it. In the past I was always willing to follow my husband in any of his ideas and now I'm afraid to give up what I know even though it's not really what I want.

Nevertheless, we're going through with the purchase because I feel in my bones that it's the best thing for both of us. If you really think this job is right for you, I would suggest you take it. If you have a recurrence, you'll find the way, but don't stop doing what in your heart you know is best in the long run. And there is a long run.

Kelly, I bet we've all felt (feel) the same way! I live over 3 hours away from the treatment center and have labored over whether I should be closer. But changing anything it so hard. Moving a chair in the room is even hard. But I know that keeping on keeping on gives me the bestest life! It's just so hard to do.
I am finding that as I get into this 20th month and my mind is clearer (or at least I'm so far gone I think I'm clearer) and I have some distance from the surgery and chemo that it is easier to "think about" a "real life" again!
Probably having more energy and spending more time with my grandkids nudges me on. It's hard to stay stuck with little voices calling grandma and expecting to hear a "regular grandma" reply!
Good luck with your tiny to giant step process! You know that you are really wonderful and can do it! You decide! You did chemo...you can do anything! much love, ma

Oh yes! I understand that feeling. I told my husband I was no longer contributing to my teacher retirement account until further notice! I was ready to spend my IRA for reconstruction too. Somehow, dear girl, you move on though. I am 3 years out from dx, hardly out of the woods, but feeling like I might be. I had a bone scan Friday and told my onc I really didn't WANT one because I didn't want to know if anything was there. Only people with bc would understand that. But today, I spent about 6 hours getting ready for my first grade classroom. You just have to move on and at some point you will feel like you can.

About 6 months after I was diagnosed I totalled my car and had to get a new one. I felt so guilty having to because I was sure I was going to die and not ever get to drive it.

Dear Kelly

I am just a few weeks away from my third cancerversary. The only thing I am afraid to move on from is my employer. I moved in February, 2006 (18 months out from dx) because I NEVER liked the house I was in and swore I wasn't going to die there. It was exhausting to move (I was still on Herceptin having been one of the lucky ones who could receive it "late"). My husband and I went on an alone vacation - the only one we've had since having our daughters and it was planned and paid for 7 months in advance.

My problem with my job is many fold. I got a new assignment which isn't really what I want to do. I could leave but there are many things to consider. These include that I get a pension at this company (many companies (including this company) do not give pensions to new employees - they might match more 401K $ but no pension), I have been there and get short and/or long term disability if I should recur (a new company would give you this after you have worked there a year - what if I leave and recur quickly?), and lastly, I have great benefits in which I do not need referrals and they've denied me nothing so far (I wouldn't leave without benefits that didn't cover pre-existing conditions). But I would much rather be in sales (I was a sales mgr - rather just be a rep) and now I am in marketing (ughhhh).

So, we all have our fears of change - I will probably not leave as in 6 years, I can retire (they have this age and years of service thing) and I will still be young enough to do my own thing.

You need to weigh the job's benefits to the chance of recurrence but the other perks of the new job. You are younger than me (by 10 yrs) so you don't have 23 yrs at the company you are currently at. However, you have decades to live and earn a living (and to buy that bigger new house you need NOW). So, start small - get the house. You and your family need a bigger house and will need it regardless of your situation. And its fun to get and redo your way (new paint and wallpaper - maybe furniture too). The job could come later except for the fact that this job is available now. But it is one job and there might be dozens that are also perfect for you too.

I didn't want to wait on everything because I figured that if I did, I really would die in my old house - of old age, frustration and boredom. Lots of people thought I was nuts (probably some on this board as I reported my massive packing project) but it was one change that has made the world of difference to me. Next stop, job hopping maybe.

Yes, I go from feeling why the heck bothering to buy new clothes for myself, to going on a shopping frenzy to make myself feel better. I always tell my sister that she will have one heck of a wardrobe if I go. Lately, I've been into redecorating the rooms of my house, sort of like at least if I go, things will look good for awhile. As far as work, I've slowed down major on that. I am an artist and have a business on ebay that I devoloped and did very well with over the last 7 years..now Im lucky if I list an item a week. My priorities have changed major..sherryg683

Once you are diagnosed with bc, the dark cloud is over you regardless what stage you are classified. I think all of us have this concern of making major decisions. Deep in our head, we know we must take the possibility of recurrence as a factor in making sound judgment. In your case, you have a near dream job that means a great deal for your career and income. I would consider the health insurance as one of the major factors in accepting or rejecting the offer. If the new job will pay for pre-existing conditions in future treatment, I would think you should accept it. Also keep in mind that the most likely period of recurrence for HER2 patients is 12 to 18 month after dx. This is another factor to consider. Wish you best of luck.

I know how you feel
 

My husband wants to take me on my dream vacation which is to go to New England in the fall. I have order information and looked up places to visit on the website but I can't bring myself to make any reservations. I am so afraid that I won't feel good and it will ruin our vacation. I am still on herceptin and some days are great and some days it is all I can do to get dressed and sit on the couch.

I'm not afraid of near plans - adopted a dog (my husband would love and look after her so that's the only long term commitment I've made), changed houses, built a garden and building a pound and plan to plant fruit trees but.....I bought a CD series to learn Italian and soon after was diagnosed with my recurance. since then I haven't been able to start it. I feel as though, if I start it, something again will happen. In the meantime all my friends and m husband considered me "cured"!!! and of course I've put on 15 lbs in chemo so I do look very healthy!!!!
I think we're all afraid to tempt fate. It's the old saying "If you want to make God laugh, make plans." but that said make short term ones and believe.
stay strong and of course you know you are not alone
sarah

I am happy someone talked about this horrible feeling.
I feel the same. It is difficult to think of new plans. I have a very demanding job but it helped me survive chemo. I went in every time I could and it prevented me from going crazy. But is was so difficult!
Now, I would like to drop it and work less but who is going to hire a 50 year old women with a cancer? And anyway, I do not have the strength to go start something new. I need a job and I am stuck. I don't feel like seeing friends, going out, or even looking at television. It doesn't interest me. I feel destroyed. I am still suffering. In my body and in my head.
Maybe with time...
Micka

I so appreciate everyone's responses and thoughts on this. It's funny, but I am still always so amazed at how deeply breast cancer affects one's life, even in situations that seem unrelated. I feel sometimes as if I have been robbed on the deepest level.

The job that I am thinking about would have no bearing on my insurance, or on pre-existing conditions, as we are very lucky to have a great policy with my hubby. It's funny because some of you mentioned "testing fate" and although I've never been a superstitious person, I find that I feel that way often. I worry that if I stop doing this, or don't do that, that "it" may come back. I worry that if I change this or do that, "it" may come back. Last year when things were going very well for us, prior to being dx'd, we broke down and splurged, and bought a nice car- 2 weeks later I got dx'd and was just sick about doing that. I walk around on a daily basis feeling like a ticking time bomb and to make things worse, feel like many people are looking at me the same way. It's so overwhelming at times that I just want to take the easy way out and sit home and wait it out. Sometimes I wish for the two or three year time frame to go by very quickly, so that I can feel a little more comfortable (never safe, of course). Then I remind myself that any time I have now my be my only time and not to wish it away.....

I was always a very structured, controlled person. Actually a would even say a go-getter (except for laundry and household chores :-) ), and now I don't even know who I am. I feel lazy, unambitious, and weak. For someone who has always had control issues ( I grew up and lived with an eating disorder for 20 years), I am the WORST person to handle something like this. It has definitely been a rediscovery of who I am and I've had to take a long look at myself, that's for sure. Some days I am so pissed off that I feel like I could take the world by storm. Other days I just want to crawl in a dark corner and hide. Some days I am so happy for what I have and so grateful to be alive, that's all that matters.

One things that I always know and that NEVER changes, is how grateful I am to have found this site and found all of you. Thank you.

Love, Kelly

This is how I feel
 

Kelly ....

I know how you are feeling about making future plans,,,,I felt the same way and must admit I still have thoughts of what if....

but let me tell you ladies - I have been fortunate enough to be here after 11 1/2 years and living with active cancer. I would think about Xmas and then tell myself, if I am still here. Then I would want to put up a new front door,,, then I would think, I won't be here to get that "little project done" well I installed the door about 7 years ago,paint the house, well that was 10 years ago, plan a trip... took them and made it through with wonderfu experiences AND the best have seen 5 more grand children added to my list.

SO ladies I say GO FOR IT and try to get past the worries of what COULD happen, instead plan for what a good time you WILL have. If I had not done so, I would be sitting around "waiting" for the day, which I refuse to do.

Good luck to everyone and God Bless..

It does get better
 

Just when I was trying to get over the idea that it was ridiculous to buy new clothes or shoes except what I needed to get by with, plan a trip, etc., the bad news came.
My mets came so fast after my initial treatment that I hardly had time to get started again, if you know what I mean. I felt like I was sucker-punched. Once I got through the next ordeal, I did decide to move on a bit. Then the brain mets. Not as hard of a punch as the liver mets, but still a punch. Then the problems with my head afterwards last year. Those 2 surgeries really sapped me and I am still trying to get over the side effects of those and the new port placement.

However, I told myself a long time ago that I HAD to accomplish something EACH DAY, no matter how hard it was to drag my fanny around. This meant that for at least a few minutes a day I had to ignore those nagging feelings and doubts. Then I began to take on small projects and that was a lift in itself.

Fighting this beast means finding a way to "tame the dragon" and get out in the sun a bit. I will never be the same person as before cancer (BC) and I have only a few friends who understand at all how hard a fight it has been. Not only with the cancer, but with the psychology that comes with it.

Kelly - try to take the new position. It may be a way of helping you over this "hump." It may be a blessing in disguise.

Hi Kelly,

I definitely understand about the fear of plans. It is nice to have a conversation about it - sometimes I think everyone here has it all together much better than I do - so this conversation makes me feel more like the rest of you. When I was dx I had just started a new job. I was there for less than 1 mo and then went out on disability for surgeries and chemo for 6 mos. I felt so guilty, but what could I do. Then as I was planning on coming back, my group did a re-org and they asked me to help plan it. I felt ridiculous making all these plans feeling certain that I would not be there in a year so what was the point. I left that job after coming back from disability for 8 months. I decided that the stress that had been so normal for me (hyper growing start up software co) was completely overwhelming for the new (much slower) me. I found a job doing the same thing but in a very established, slower growing company that is 10 mins from my home. The change was terrifying because again I felt like a fraud, selling myself through interviews but feeling like I wasnt sure if I would be there very long before a recurrence. I had terrible chemo brain and I felt a fraction of my old professional self. Well, I made the change and it has been very good for me. I eventually settled in and felt more confident in my value to the new company, I deal with chemo brain (i just don't debate as much as I used to) and I truly let things just flow off me a lot more and now I have a much more sustainable work life. I also found a wonderful friend in a co-worker who is a 5 year survivor and has a husband who is a 10 year survivor of esophegeal cancer. We both feel lucky to have found each other and to be able to work together.

I really think the pshycological aspects of cancer are not talked about nearly enough and that most of the people around us really have no clue the challenges that we face. I have talked with my therapist about it that it feels like there is an alternate (but parallel) universe for those that have faced their mortality. Almost like we are in a tunnel that we can't get out of, you just keep moving forward through life in this tunnel. My HIV+ friends are the only ones that I have found without cancer that 'GET IT', if you know what I mean.

Best of luck with the job decision. Sounds like a nice opportunity to have come along unexpectedly. Kind of like the bulbs in spring - enjoy!

Hugs,
Patricia

ps. I was very supersticious about removing my port and finally got up the nerve to get it out last week while I was out for oopherectomy. I am now very happy that it is finally out and am glad I waited until I was emotionally ready to let it go.

I have a different take on this subject..............
 

Although I couldn't agree more on the uncertainty of our future's I have a different take on this subject...........................

Although the thought of recurrence in my life (because at this point I have had no recurrence) is unsettling at best, I try to keep those thoughts and the thoughts of all of our uncertain futures at bay. You see, I try to look at life this way..................none of us knows what our tomorrows will bring us. None of us. I often comment that the only difference between me and my husband who has never had cancer is this..............I had my mortality slapped in my face and he hasn't. I've had to look at life differently - or chose to - because like you all said, uncertainty is a part of our future. BUT, it is also a part of every single persons future. Cancer or otherwise. That is what keeps me striving forward each and everyday. I look at each new day as an adventure. Each new purchase and decision a purchase or decision I have made for today. And only for today because I don't know what my tomorrow holds BUT (I hate to keep plugging away at this point) neither does anyone else.

People on this board have shown each of us that living with active cancer for years and years is definitely possible.

So, although I do understand what you are all saying (as I think of that day where I may experience a recurrence as well) I also understand that life is here for us to live. Life is here for us to enjoy and to do all we can with what we are while we are still here.

Cancer may rob us of many things but I refuse to let it rob me of a life I WANT to live. A life I WANT to enjoy. And, the WONDERFUL life God has given me.

Thanks for "listening" to my 2 cents worth.

Hugs to all,

Mary Jo

I told my husband I don't know whether to plan for the future or my funeral.
It this point I am planning for next spring, as far as gardening, planting, etc, but as much as I'd like to go on a vacation this fall, I'm afraid I couldn't stand the trip from a "pain and fatigue point of view". I don't know from day to day if it's going be a decent day, or a bad one that I'll end up sleeping most of the day.

I tend to feel the same as Mary Jo. None of us on this earth know when our number is up. Just think of the poor folks on the bridge that collapsed with absolutely no warning. You just can't let this disease keep you from living.

Strange as it seems, I feel like my disease has been a blessing in disguise. Many of the things that I was saving to do "later on" when the kids were grown and we had our retirement funded, I am doing now.

I do admit to having feelings (big feelings) of doubt sometimes, but after having my little pitty party, I have to kick myself in the butt and remember that I'm just burnin daylight by engaging in such thoughts.

I'm over 10 years since diagnosis, and six years stage IV, and life is just too interesting to not keep pursuing it.

There is one thing however that I haven't had the nerve to do yet. My husband and I spent a week in North Carolina last August looking at horse properties and thinking of making a major lifestyle change. We actually almost made an offer on a place. Then we decided we had better not do anything to hasty.

Now that we've been back home and thought through the logistics of such a move, we've cooled off. I do still find myself dreaming of the little horsefarm in Carthage, but then I can't imagine leaving my doctor and the great care I receive here.

So for now, I just keep dreaming about it..... But who knows!

Kim

Yes to what everyone has said. I guess this is the new normal. One day
I buy a new car, the next I say no I shouldn't buy anything but its good
to know others are also adjusting their sails and we will survive this and
be stronger for it.
patb

What we do and why we do it
 

To some degree it depends on where you stand. I feel like it would be presumptious as a NED stage I to have any genuine idea of how it feels to consider this question realistically in other people's shoes.

I don't have much fear of making changes, although I am much more tuned in to the practial genuine need to hang onto whatever health care benefits I have.

I think that a big part of the problem is that the sheer fact of loss of hormonal impetus gets ignored, not only by the doctors but US as well. When we had lots more hormones we had more drive. I think we need to "allow" ourselves a lot of credit for making the most of whatever we have left. I believe that the loss of hormones does actually change who we are to some degree -- our personality and our motivations -- and we have to find some way to learn to live and make new choices with the new person that we have become.

AlaskaAngel