How do you get past the fear of recurrence?

Gai

Hi Jessica749

You're right one way to deal with the fear is to take action.  Living a balanced life helps to put things back in perspective.  What are all the things that yo can do to reduce the risk.  Eat a balance diet, exercise, gratitude journal and for me meditition has been a saving grace.  It's keeps me in the now rather than thinking about an unknown future.  

You go girl! Enjoy your workouts

Gai

Gai

mfml

I am glad you found this community as well.   Sometimes just having an avenue to express how you feeling helps you move on from that space.  No doubt we all have our darker moments but getting through them is what is important.

Take care

Gai

Gai

Hi Abby20

I had a journal with an inspirational quote on the front (link below).  

Special Tip - In the first pages - Before you start give the book to your friends and family and ask them to write 1 -3 reasons why they love you  or why you are so special to them. The feeling when you get your book back is heart filling.  Knowing how special you are to people can really pull you forward when you don't feel great.  

The next few pages collect inspirational quotes that you can read to pick you up if I feel down.  

Each night take 3 deep breathes (which will calm your nervous system if you aren't feeling great)

and ask the question out loud.  "What am I grateful for today?"

Then write whatever comes up.  You could also consider 3 things that you would like to be grateful for the following day 

read them in the morning before you start your day.

You will end up with a collection of wonderful experiences and reasons why you love being you and why life is so special for you and those around you.

It is amazing how it isn't the "big things" but rather the ordinary moments which make life so special you will end up with an amazing collection of them.

Hope this hopes, take care

Gai

PS I still have my book

Journal link - http://www.amazon.com/s/ref=nb_sb_noss_1?url=search-alias=office-products&field-keywords=quotable+journals&sprefix=jour,aps,313&rh=n:1064954,k:quotable+journals

Gai

Hi Jessica

There are a couple of points in your post which are important, Risk v Fear,  thanks for posting.  I always find it helps me to break things down. 

The doctors will talk about the Risk of recurrence and from a medical perspective what they know, the experience of other women with a similar diagnosis and what their expectations are from a medical view.  If they put 100 women in a room with a similar diagnosis this is what we found.  My view was that I was never in that room, so while I took on board their advice I didn't take on that the outcome was inevitable and this helped me a lot.   

The Fear aspect is when you are able to let go of the concern of recurrence.   This is different  for everyone but you seem to be going well by just getting on with life.  You have a great atititude, which will help you a lot.

Take care

GemStateGirl

Gai, I love your suggestions about journaling, especially your comment that "You will end up with a collection of wonderful experiences and reasons why you love being you and why life is so special for you and those around you."  I'm going to give this a try.  Thanks for suggesting it.

LtotheK

Gosh, indenial, you are so articulate.  All your points really hit home today.

There ARE good days, the irony for me is, I have so many of them that it increases my terror!  Talk about the paradox of cancer.  You captured much of this in your description of being young wondering about a future.

I will say that signing up for adoption has on one level been the hardest job of my life (and I've had some hard jobs--tenure was a doozey!)  We experienced a great deal of prejudice because of my diagnosis, for instance, we can't adopt overseas.  And although the company charges everyone a flat rate to "wait", I was forced to put my diagnosis in the public materials.  I am sure we have been overlooked because of it. If that doesn't sum up how different I am from most of my peers, dunno what else does.  Adoption and cancer, a double whammy!

Then, for me, there are the issues of early menopause.  Very painful, both physically, and emotionally (I got my period back 2x after 2 years, and 2 months--a bit of comedy: I was so in denial that I called the hospital with what I thought was rectal bleeding).  I never expected how hard that would hit.  It is one thing to make your choices, and quite another to have them made for you.

You really touched me, today, indenial.  Thank you for sharing your feelings, they were so needed. I am sending you a lot of love today.

By the way, I'm in Chicago.

Gai

LtotheK

Firstly, congrats on the hitting your career stride what a wonderful achievement for you and something to be really proud of.  

I understand where you are coming from as I was 38 when I was diagnosed.  I am happy to say to I was diagnosed in 2000 so now 13 years on - wow that has gone fast!.  I have spoken to many ladies and it seems that the younger you are diagnoses, the more the fear of recurrence can impact you.  

Like yours my diagnosis was of a very aggressive cancer that had spread when it was confirmed as cancer - 3 months after I found the lump.  I was told that getting more lumps during chemo was a not such a good thing. I found several lumps in the first couple of months of chemo, it was pretty intense, body scans the whole bit.  You're right they had no stats for me......

I was walking on egg shells for a while trying to do everything right than I had a frank talk with my onco as I was advised not to have massages, wine  etc (i.e not more fun!) her advice was do whatever makes you feel good - then I relaxed and enjoyed the simple pleasures.  So I enjoyed a glass of wine and had a massage without the guilt that I had previously experienced and enjoyed life a whole lot better.

The fear lessens over time, I have put together a ebook with 10 ways that I used to get past the fear they may help you also, the link is below.

You have taken positive steps to talk about it here and I have found that also helps and can help you let go of it a little at a time.  

Take care

Gai

PS I am happy for you to DM me if I can help you further

http://gaicomans.com/wp-content/uploads/2013/02/Crush-The-Fear-eBook-Final.pdf

LtotheK

Gai I am so excited to read this link. I want to thank all of you for your kindness and generosity today. Words aren't sufficient to convey what your support means to me.

Claire_in_Seattle

More to the point......how was the wine???

Colt45

@Indenial:



"but I want to live as if I will live a normal life..."





YES. Precisely. My wife and I have dreams for ourselves together. We have dreams for our girls.



Are those dreams supposed to stop now?



HELL NO.



Living afraid, I've heard some say, is just another way of dying.



And living THAT way... is a pile of crap.



We are looking for a new house. We are making plans as if we will be living long lives.



Living any other way would be cheating my girls. Cheating my wife.



I won't do it. I am going to LIVE. I am going to live with my wife... with my girls. FOR them. For ME. All at the same time.



There is no other way.



Do I get scared? Yes. AM I scared? Every day.



I trust one day it will end.



The fear.



But I will not wait for some "all clear" sign to work up the nerve to live a life that's rewarding with my family. Eff no.



We're going to buy that damned house. We're going to live "as if we will live a normal life".



Because it would be such a tragedy if instead of doing that----we just waited to die.



I pray that we all can understand this and live.



I am working on this.



My wife is 41. We never dreamed we'd be worried she could die from breast cancer.



Just 9+ months ago, my worries were about changing jobs (such small potatoes now) and selling our house to buy a new one (just closed as the seller today----now I need to buy something new)... My concerns for my girls were braces and would they have to worry about acne (seriously) and would boys hurt them and how I would handle that...



My fears are different now. Scarier. I appreciate the fear for a young woman. Too damned young. I am angry. But I know living angry and scared ain't living.



I battle every day to reach that place where my mind tells me: "she's going to be alright; the odds are strongly in her favor; most women survive breast cancer, etc.,"



I just have to live like that's how it's going to be.



I will waste my own life and let down the people who depend on me the most if I don't.



I'm more afraid of that than anything.



May we all get past this fear.

sweetpickle

Beautifuly said Husband!

Colt45

The frustrating thing is that fear and anger are emotions. We have them, whether we want to or not. Nobody CHOOSES to be scared. Or to be angry.



Nobody can tell you "don't be angry"... "don't feel scared". It's not like you can flip the switch on these emotions.



The best we can do is keep moving forward and try to manage not IF we're going to be scared----but rather how much we're going to allow the fear to rule our day.



The fear can be there... but we can live despite it.



Then, as I've read so often, at some point, the fear lessens and one day you wake up and it's better. Maybe not gone... But better. In many cases A LOT better.



The only experience I have with this is the sadness I felt after a breakup with a college sweetheart many years ago. I was crushed. My mind was just fixated on this breakup and it just ruled my day. It felt like I'd never get out from under those emotions of sadness and confusion. Then one day I did. I just woke up and I was ok. And I realized that something inside had turned-----and I was ok... when 8 hours earlier I was not. And I thanked God for "freeing" me.



So I just basically keep trying to move forward, until I'm not so burdened by this fear and anger. And I hope that one day I'll wake up and instead of feeling this anxiety mixed with fear and anger, I'll be thinking more about the things I used to---and LIVING.



I don't know when that day comes. I hear it comes for so many, though... and we have to just kinda 'hold out' until then-----and more than hold out, we have to live.



With the fear. With the anger... until it's not there anymore---not like this.



We can't blink or snap it away... but we can live until it fades.



Make memories and do the things you want to do---just like before your diagnosis. And in 5 years, look back and say "look what I LIVED and enjoyed in these past 5 years"----rather than realize you just wasted 5 years of prime living on fear.

CelineFlower

crush fear?

my fear is part of my process... not sure its like that for all but...

Fear of reoccurence is a realistic fear... sure we can look at numbers etc... but nothing in my experienceremouves that kind of fear.

for me...it is meant to be experienced not crushed. 

All bravery involves fear... 

i am awed at my own bravery and the bravery of others with bc

LtotheK

Claire et al, last night, I went the gin and tonic route.  And loved every minute of it, along with a gorgeous organic white bean and kale salad.  It is so hot here, I think beer and gin are the ways to go for now! 

I also got down a bottle of wine I brought back for my husband from Republic of Georgia. When the heat breaks, we are going to enjoy it.

planetbananas

Colt45 what you wrote about keep moving forward really resonated with me. I put one foot in front of the other and I don't worry too much about my fear or my mood, I just make sure that every day I focus on moving forward even if its barely perceptible.



Someone once told me to picture yourself like a boat in the ocean where you are riding on top of the waves in your safe boat, don't get out of the boat and drown in the water. when things get particularly badmentally I try to picture myself in a safe boat.

Gai

That is fabulous LtotheK I am so inspired to see you stepping and enjoying life. yay!

kaza

I feel at some point forward is the only way, i find it hard to remember the person i was before dx, sometimes i do or say something and i get a feeling yes that was me before, i feel i am slowly moving forward and leaving fear and sadness behind me as i go. I am not saying the fear has completely gone but fading, it has just taken time to get to this point.   x   

MNSusan

"Worrying does not empty tomorrow of its trouble, it empties today of its strength."

Words I live with every single day.  

jessica749

I'm sorry LtotheK. I see this a cocuple of days later.  I am in NY and would be your "big sister" if I could. Let me just give context:  the idea that no one has any guarantees was given more personal meaning when two people close to me were diagnosed with advanced cancers (not breast), stage 3c and stage 4 in the past two years, both in their 50s. It drove that point home to me, more than abstract stats which I could wallow in as well as the next person. I was diagnosed at 47 and on one hand I was young-ISH as a premenopausal woman, and on the other hand it's pretty middle aged. I think when you are older you can more easily see that other terrible things do happen to other people/helps me with the 'no guarantees'.  Along with knowing that $(*& happens, and to others too, I am currently on a kick (cross my fingers, it lasts) where I am trying to channel my fear into the positive as it pertains to my diet and exercise. Feelings of false control perhaps. I know others  have other ways.  My fears/anxiety just bubble under the surface.  They were so great they drove me to a bmx. Knew how difficult it would/could be to go for the continual testing.  I am sympathetic to the fear and anxiety that surround this time for you.  

learningtoletgo

On the subject of fear of a recurrence of BC, here is an interesting interview with Anita Moorjani who was healed of Stage IV Lymphoma after a profound near death experience. Her book "Dying To Be Me" was on the New York Times best seller list. Here is the link to her Youtube interview. There is a part during the interview where there is an interruption and another story ensues briefly but simply have patience and her accounting of her NDE continues. She says it was a fear based existence that resulted in her cancer. I also included a link to a second interview.



https://www.youtube.com/watch?v=lTscap-5IHM&feature=youtube_gdata_player



https://www.youtube.com/watch?v=y1VG7895XnU&feature=youtube_gdata_player

planetbananas

Smillsbc I really wanted to like that book but didn't. I didn't feel like I could relate to her at all and there seemed to be a lot of magical thinking that did not speak to me. Who knows, maybe I read it at the wrong time in my journey. I saw her on tv (which is how I heard of the book) and I know she is inspiring to a lot of people.

learningtoletgo

planetbananas, so sorry you could not relate. I found her both inspiring and uplifting. There are many authors who have written about their NDEs which mostly have a similar theme of a wonderful unconditional love experienced by those who have crossed over to another realm of existence. It gave me comfort to know that there is no need to fear death since life continues, albeit without our physical bodies.

Anita's message is that when it is our time, we will die. She says we should not live in fear but live our lives joyfully realizing that there is nothing to fear. Life goes on and doesn't end.

LtotheK

Planetbanana, your dog photo does as much for me as any book could right now, what a CUTIE PATOOTIE!!

My issue with "magical thinkers" is they often presume to know what caused their cancer.  If the medical community is unclear why some people get it and others don't, I have a hard time accepting people who suggest life changes can halt cancer.  If this were the case, a beautiful young person I know wouldn't be Stage IV.  And if fear causes cancer, then my co-workers would have gotten sick a lot sooner than I.

That said, I am enjoying a lot of books on meditation, living in the present, and trying to release myself from the cloak of fear.  It is an ongoing battle, with good and bad moments.  I think the hardest thing to accept about balanced living is that it is so very hard to maintain, falling off the wagon can feel like going right back to square 1.

Lily55

Balance means just that, not being perfect.....



i dont think any one thing causes cancer, its opportunistic, if we are too out of balance and have a body pre disposed to cancer (i dont mean BRCA just normal dna), then one day cancer gets a look in as we are too out of balance on too many levels to stop cells multiplying......

dtsmith68

Please Help someone please reply, I just went through 6 rounds of TCH for a HR2 postive tumor w/sentiinel nodes positive, surgery was after chemo on July 1st 2013, post op, tumor had grown 1cm and had 2 of 12 lymph nodes positve, they want to do more chemo, Erubilin as part of a test study, Has anyone else had similar treatment, dont like idea of test study, anyone with similiar occurance please help, Want to make the correct decision for me and my family,

Thanks so much for any HELP!!!!

placid44

dsmith,



I have a very different type from you, but I have heard good things about eribulin. I hope others reply who have diagnosis/treatment similar to yours.

planetbananas

Thank you, LtotheK! She often looks like she is smiling.



I agree with what you said about magical thinking and fear. I also am trying to live in the moment, take it all day by day. It is definitely ongoing.

lisa2012

I have just hit the one year mark on the AI (so stiff and achey) and that's a little over one year since end of chemo and surgeries. Have a routine checkup with blood test in a week. Feeling like it will probably be fine- and feeling like I will really lose it if there is a problem. Breathe, meditate. walk. thank goodnes for lexapro! Now three months of a calmer center.

_Ann_

One thing that helps me is to think of recurrence as a separate disease from my primary cancer.  I am free to think primary treatment was successful.  I have NED right now.  I am at risk of developing metastatic disease, but that is a separate disease, and I don't have it now.  (I know, technically it would be the same cancer, but it's still a very different thing than locally advanced cancer.)   Somehow living with risk of a new disease is a lot more acceptable than living with uncertainty about whether my treatment was successful.  And somehow I am not very worried about it at all!  I thought I would never get here and I'm not sure how I did.  Time passed, life goes on.  I feel healthy and busy.  It's hard to keep up active fear of dying when you feel perfectly healthy.

And somehow I had an attitude adjustment about death.  I think I felt entitled to a long healthy life.  But why should I feel entitled to that?  That would be an incredible good fortune.  Just having a human life is an incredible good fortune!  I am alive today same as everyone, and I get to be alive every day until I am not.  I am lucky I feel good most of the time.

I had a lot of fear about how my death might affect others.  My mom died pretty young.  It was sad, but it's not as tragic as I made it out to be.  No one person's death is tragic.  Life goes on, the void gets filled.  I am probably closer to my other family members than I would have been if my mom lived to old age.  It would be the same with me.  My loved ones would survive without me.  They would be sad for a time and their lives would change, but they would go on.

That said, if I do develop metastatic disease I give myself permission to panic all over again.  And I hope that I would come to a new place of acceptance with that.

LtotheK

Ann, I think that is super-smart.  I like it, and I think I'm going to add it to my arsenal.

I had a counseling session today.  I think the thing that shocks me is how present the fear still is in my life.  It felt so good to have a place to cry, to be afraid and not be judged.  I am realizing I put a pretty strong face on day-to-day with my husband and family.  None of it is tragic, as you say, but it is traumatic, and trauma seems to rewire the brain in the most bizarre ways.  I am strong as an ox.  Except when I have panic attacks and flashbacks to having my chemo (my flashback is having great difficulty getting the needle in a particular vein).

I spoke about expectations a lot today, and I think most of us who go through treatment realize any life at all with any happiness and comfort is a luxury.  I have no sense that I "should" have a long life.  But, after all, death is the great human mystery.  I certainly would like to keep it away for as long as possible, as I have so much I feel is worth living for. Not the least of which is a long wait for adoption...

I admire so much anyone's peace with trauma and death.  The first step is acceptance, and I accept that I'm not there yet!