Anger Management and the young survivor

[onthemendmomma]

....and by young I mean anyone under????????


60? 70?   I really don't know but as a woman under forty who is lucky enough to have had kids (some of us afflicted havent even had any at all) I am going through a stage of disconnect with all these people who (understandably) are my age (or older) and distraught with their mother's diagnosis. I do feel empathy I DO....and I share my experience willingly...but honestly...this disease...ANY DISEASE in a person of one age and a person FORTY years older is going to look act and be very very different.....And I know we all have to support one another and I am all for that but it feels like this is more about supporting caregivers sometimes than supporting those of us who actually have to go through this....Maybe this is just another stage of acceptance of this disease...and I mean no disrespect to anyone but I feel disregarded when I am compared constantly to women who have had full lives and I haven't yet.

[cath81]

sorry to intrude. i believe what some of the cancer patients meant is that this thread, specifically, is for young women suffering from ovca. but that msg was misunderstood along the way and some caregivers have taken it to mean that they are not wanted in the forum.

i believe that wasn't the intention of the cancer victims/survivors... let's all read carefully before we respond... caregivers can still have their say elsewhere in other threads.

it is a little ironic that for a thread with "anger management" in the title, there hasn't been many suggestions so far abt how to manage anger...

[Beachwalker33]

Your so right? We used to talk,what happen.The address misunderstanding,I didn't care.I was so desperate to get her something that showed my appreciation,she helped me so much.I've almost wrote to you a few times.I have been worried about you,and if you have help! I always pray for you! Even if you did refer to me as your favorite lunatic,nice!!!Do I care,no.I do know what this disease does your mindset as well.Anyway,write to me sometime and let me know how your doing....God Bless,Jen

[crecco]

  I too have read and re read this thread and wondered about posting. All I can say is WOW!  I do understand you younger gals feelings. I felt the same way and I was 44 when diagnosed. I cannot imagine being even younger. But one thing I have decided in the almost 4 years since is that although I HATE what this cancer has done to me and my life, I hate even more what it has done to my family and friends. Thogut I have to deal with the fact that my life has been dramatically cut short, I have also realized that my family and friends will have to go on with out me also. And I do not want to have to put them through that, but I have no choice in the matter.
  I don't think it is a question of who has it worse, because when it comes down to it, it is just as bad for one as it is the other, whether it is ourselves or our family, and we all have the right to be angry. Cancer is not a fair disease. It does not care how old or how young we are. It does not care whether we have young children or not. It does not care whether we want to live or not. It just does what it wants.
  The anger side of it is something that is not to often discussed on this forum. Most of us try not to talk about the anger or the fear that we feel but it is something that is there and should be discussed. We cannot always keep it bottled up inside of us. But the most important thing to remember is that we were all brought together for reasons that we do not know and the best thing for all of us is to continue with the love and support we were all looking for when we first came here.
         Chris

[Beachwalker33]

I'm sorry for all of you that I offended,it was not my intention.My heart and soul are in termoil for all of you and I don't believe I deserved some of those responses! I want a cure for all of you,my Mom is gone,she's in heaven as an angel her pain is over! Unless you knew my Mom and me,our relationship,you don't know that I didn't feel her pain! Extreme fatigue,nausea,the unability to eat or go the bathroom,brain fog,fear,anger,burning in your veins as that poison is entering them,dehydration,irritability,questioning your faith,extreme worry,pain in your stomach and just about everywhere else,dizziness,helplessness,wondering if your going to wake up in the morning and not wanting to be a burden,awful tests,ascites pushing on your bladder,organs,pain,and yes the fear of leaving your loved one's.Confusion.There's more,this is what I picked up on,I was not told!I could go on,but you know how you feel ,I don't though..

[Ramsay14]

Don't leave the forum Pattie.  No one wants that.  This is all a huge misunderstanding.  Let's take Gail's advise and move on from here.  

[pattie1218]

Gail, I apologize I didnt read your message before I posted mine. Please forgive me, I just dont feel like us caregivers are wanted here. I have had nothing BUT support shown to me on here, including by Becky herself. She has given me tips and advice! Now I see that she is angry. I apologize and a truce is in order as you asked as some people keep the fire going ....and Im sure my post didnt help...I apologize for that. Us caregivers can be angry to at this horrible disease. I am so sorry for what Becky is going through I really am, and I have no idea what its like, and have no words to help her, other than be there for her.  I will look for a new forum for caregivers. Im so sorry.

[gah_70]

I guess that answer is a no.

[pattie1218]

I am deeply hurt. I thought this forum was for anyone to join, and not an "Exclusive Club" for Ovarian Cancer Patients ONLY. I am so sorry I intruded in this. I am so sorry that I do not "walk in your shoes" nor can you walk in "my shoes" . I am so sorry for your battle that you have been living. I do not know of anything or any words that WILL actually comfort you EVER.  I am so sorry that I barged into this site, and was in need of sympathy and empathy, and SUPPORT. I was looking for support and although I did find it, I am sorry to say that I probably shouldnt have. I had no idea this forum was strictly for patients. Please accept my apologies. And I TOO as you are, TOO TIRED TO EVEN EXPLAIN MYSELF. All I can is that Yes, I am losing MY Mother, and I AM NOT STRICKEN WITH OVARIAN CANCER MYSELF and it feels like you are saying BOOO HOOOO in my face....because she lived a life, and had children, and is OLD...etc. ETC...ETC... like I dont care about what you are going through just because I AM A CAREGIVER.  SHAME ON YOU FOR BEING INSENSITVE TO US as well. SHE IS STILL A PERSON AND A HUMAN BEING. I THOUGHT THAT I DESERVED TO BE HERE, AND I GUESS I AM NOT WELCOME . I THOUGHT THAT I HAD BROUGHT JUST AS MUCH SUPPORT TO ANYONE HERE THAN YOU LADIES HAVE GIVEN ME.  WHAT GIVES YOU THE RIGHT TO BE ANGRY AT ME BECAUSE I AM NOT SUFFERING FROM THE CANCER AS YOU ARE??? I AM SORRY FOR THAT. IF I COULD TAKE AWAY THIS CANCER FROM EVERY WOMAN IT INFLICTED I WOULD IN A HEARTBEAT. BUT WHY DOES THAT MAKE MY FEELINGS INVALID???? WE ARE ALL IN NEED OF SUPPORT HERE! AND ITS NOT GOING TO MAKE ANYONES CANCER GO AWAY.

[gah_70]

Well said, Becky.  I have read and re-read this thread and wanted to post on it, but thought better of it.  I'm posting now because I'd like to suggest onthemendmamma start a new thread since this one has been so badly 'hijacked".  A few things to keep in mind:

1. This forum is for everyone.  Those of us with cancer as well as those who are caregivers offer a lot of advice that we need to hear.

2. No one ever said caregivers were not welcome, in general.  This is a public forum, and we need people involved on every side of ovarian cancer issues to post.  There is a lot of information out there we haven't even touched yet, and it takes all of us to make sure we are educated.  

3. No one ever disputed the value of the research we've gotten from some caregivers.  Afterall, many of them are able to do research and share it with those of us who may be going through treatment and don't have the strength or mindset to do it ourselves.  

4. No one ever disputed the immense heartache caregivers go through.  I have often thought I'm glad it is me suffering this disease instead of someone else close to me.  The feeling of helplessness, fear, and loss they have would not be something I'd want to experience.  I sometimes can't let myself be sick when I feel bad because I can't let those around me see it (which is an issue I need to work on...but that's another subject).

5. It was politely asked for this thread, and this thread ONLY, that young survivors respond.  But, since this is a public forum, others can post, too.  It seems some have taken offense to being asked not to post, and chose not to respect that. I don't understand why.  If you wish to discuss that, perhaps a new thread would be in order since this one now resembles nothing it started out to be.

I really don't see a resolution this, because everyone has an opinion they wish to air.  Discussion over a conflict is healthy, too.  This one has gotten out of hand, however.  So, is it going to be like other issues that have come up in the past?  Is it going to linger for week upon week until someone gets so mad, they leave the forum, or threaten to?  Can we please just call a truce?

Gail      

[Tybear]

"Again, no one was suggesting that caregivers don't have a say on this forum...I've learned a lot from Marty about how it must feel to be on the other side of all of this - it's made me more understanding of what it must be like to be my parents or sisters or spouse. We were merely suggesting that when someone starts a post directed towards those with ovarian cancer, that it would be respectful if those who didn't have cancer didn't post replies."

I'm not understanding this...it's one post! Can we not have one lousy post to ourselves? Like I said earlier, I wouldn't post on a thread directed towards caregivers because I have never been a caregiver - does the same not hold true for the title of this thread...The young survivor??

Teresa...I'm not playing the "I'm worse off than you are" game...I was writing that in response to Beachwalker who said that because she cared for her dying Mother, she understood my pain -  everyones potential loss here is immeasurable. But no - Jen does not "get" my pain.

You are right Marty - Jatoo, Bob Alan and yourself have provided loads of research for all of us here...but I suspect that, even Bob, wouldn't reply to a post that was titled "To the Young survivor" because he himself, isn't a young survivor.

I'm going to give up now because clearly I'm not conveying this correctly and I'm getting totally frustrated...maybe I should go answer some questions on the prostate cancer forum or something...

Becky

[doicat]

First of all I GET IT here guys....Marty....you are like a dog with a bone and just will NOT let it go!  Please just let it go and give these ladies a chance to have their own discussion without hearing how hard it is for you.  I'm sorry if that sounds harsh and I feel for you and your loss but this is an issue that you have no experience with!  Yes, you have had hard experiences in life but PLEASE just let it be....

Young girls...you too need to realize that whether you have a 2 year old or a 20 year old kid...it is equally hard for all of us.  No one wins the prize for worst scenario here.  We are all loosing things with this cancer and no one has it worse here! Sucky though that is.

Now let's us play nice and respect this thread for the young ladies going through this and let them feel free to express whatever they want without UNASKED for advise.

'Nough said!  We are all ladies here and need to respect each and everyone's space.

Hugs and peace to all
Teresa/Doicat

[SimplyStar]

You as the patient think about the ones you possibly might leave behind,  do not worry, life goes on, no one is irreplacable, we like to think we are but in reality we are not."  

Since I was the one that wrote the above post , let me try and explain a little furthur just what I meant to convey.  When anyone dies , they leave some loved ones behind, life does go on, they go on living, as they should.  We can no longer direct the ways of the living from the grave,  that job belongs to others now, your words and love linger on but deceasions are no longer yours.  this post was not done to hurt any one, far be it from me to ever hurt anyone, I am a realist and so I look at life and death maybe a little different from some of you.  As a nurse in a MASH unit in Korea in 1952-53  I saw death and life everyday, working as a nurse for many years I sat with death many days, held hands and cried along with the family. The toughest ones were the children,  to lose a gentle soul so young is hard,  I do not consider myself irreplacable, I know that my loved ones will remember me but for them life will go on.  So all I can say is I guess the post was my opinion and if it bothered you, I am sorry.  marty

[onthemendmomma]

It is exausting to keep repeating myself but it is affirming to so as well. Caregivers are also in grief...they are entitled to this grief. The grief of mourning a loved one....this is different...it is distinct and sad but it is not the same.

We survivors/victims of cancer are experiencing a different grief/terror. A grief that includes the terror of a timebomb that we didn't even know was ticking inside us that may (probably) despite our best efforts will continue to do us harm. PLEASE STOP TELLING ME HOW I SHOULD FEEL ABOUT MY CELLULAR FI!@#  REVOLUTION GOING ON INSIDE MY BODY WITHOUT MY PERMISSION.

   Today, despite my best efforts and desires to the contrary, I had to go to the doctors office which happens to be at the hospital. Despite, my preference not to I had to get blood drawn 3 different places b/c for some reason at this office they didn't want to deal with my port.....(which all the health careproviders said I'd just loooove...I don't ...I don't love my port 1 bit) Today I had to get xrays and wonder if by the time I got home the hospital will have called to tell me that I had to go back and be admitted....Today, I was reminded I am a "dead woman walking".....IN A VERY DIFFERENT WAY THAN we all are, in that we will all die "some day"...

Please, I respect your experience...why is it impossible to respect mine? Is it just too mind blowing to think that the person you loved may have had an  experience like mine? Maybe she did. Maybe she didn't. But this is MY experience...and the experience of the women expressing themselves here...please if you really care LISTEN...and LEARN

[SimplyStar]

Hun you are forgetting about some very helpful posters, when you suggest that we, the caregivers, should not post on the OVCA threads what about JatooBob, Alan, just a few among many, with the research that many of us did insearching for answers and then we share them,  When Alans Mom was alive we all learned so much through his research, Jatoo always had an answer for us and with Bobs daughter we were able to get a new perspective about the younger  women,  One thing I have learned is that women have two very distinct sides, one is very private and the other is the public side that she alone can share.  This forum provides the vehical for lifting that curtain a little  and sharing the private side.  Life is too short and sweet to guard  those shared moments and not let them have the freedom to enlighten someone  that needs the help.  We have all made friends and we have lost some of them, we also wonder where some of the friends are when they no longer post here.   One thing I have never shared with you is , I was taught that life is a road I must follow, I shared this with my kids, there are many bumps in the road and there are many fine clear paths, the side of the road is lined with beautiful flowers,  stop along the way and smell the roses, if you look far enough towards the end, you will see a rainbow  take your time as you travel and know that at the end of the road there is freedom and peace.  Leslee found her rainbow.

[Ramsay14]

Dear Jen,

"So why shouldn't the advice of caregivers be excepted as a loving gesture and an effort to help someone else have more time with there loved ones and live a longer life"  

Why is this thread so difficult to understand?  We are all painfully aware of what this disease is doing to our loved ones.  We understand that the caregiver is experiencing excruciating pain!  We understand that it is excruciating to watch a loved one live with an insidious disease such as ovarian cancer.  The advise of caregivers is accepted and invaluable when appropriately given and when asked for!

What is not appropriate is when a caregiver offers up the advise of:

"You as the patient think about the ones you possibly might leave behind,  do not worry, life goes on, no one is irreplacable, we like to think we are but in reality we are not."  

That was not a loving gesture!  I'm going to dare to speak for a majority of the young survivors, but the above "advise" is our biggest fear.  It's the most horrible nightmare any of us have ever had.  Leaving our children behind without a mother.  How is the above advise loving?  How is it helpful in any way?      

[dawnlyn]

Why are you trying to put an age to this disease and what happens to this person...You speak of being a certain age 30 for example and your peers are going on with their lives at that same age....True but women of age 40, 50, and 60 with ovarian cancer their peers are also going on with their lives..... Granted there are different set of circumstances with each age but that is just that  we all have different things we all have things going on at different times in our lives.. And each holds its own in importance to that individual....I hope that makes sense.....It is okay to be angry and we have every right to be so..If you do not have this disease you are going on with your life.....Please take the time to consider those caregivers who really are a special group of people and women of all ages who have this disease, because you are all right unless you walk in someone shoes you really do not know what they are going thru regardless of the age....The age should not matter...What should matter is the love and support we can all give one another..........We all want to live our lives to the fullest........We are all either  someone's mother, daughter, sister, grandmother, aunt.....We need to help one another and try to our best to find a cure for this damn beast........so others will not have to go thru what we have to endure.....I am not trying to upset anyone, but we all need to pull together, there is strength in numbers.........With the deepest love and respect.Dawnlyn.

[Tybear]

I know I should let this go and I'm trying but I take exception to the post from Jen - with all due respect no, you have no idea the pain I go through. YOU do not have ovarian cancer...you can have empathy for me and my situation and sympathize with me, but you don't really know what it's like.
Being diagnosed at 26 years old was awful - my son was 2.5 years old, I had recently separated from my ex-husband and has *just* begun a new relationship. Then I'm handed what felt like a death sentence and all the literature out there is for older women...where's the brochures about being a single mom with cancer? Dating with cancer? Dealing with menopause at 26? Losing my ability to have more children? Not being able to take HRT and subsequently being diagnosed with osteoperosis? Having to think about who my child will live with when I'm gone? You can't possibly tell me that you have honestly gone through all of that and know how it feels. Like I said, you can empathize with me, but unless you have had that IV hooked up to your veins and had those toxic drugs waging war inside of you, you don't really know...
Again, no one was suggesting that caregivers don't have a say on this forum...I've learned a lot from Marty about how it must feel to be on the other side of all of this - it's made me more understanding of what it must be like to be my parents or sisters or spouse. We were merely suggesting that when someone starts a post directed towards those with ovarian cancer, that it would be respectful if those who didn't have cancer didn't post replies.
Becky

[Beachwalker33]

I was told to get the tests done to see if I had the gene or worse.I should for my son.I was told they thought I had a fibroid during pregnancy.I'll get it checked.I thought I had time,but its seems like this disease doesn't discriminate,young or old.I pray for many of you everday,especially those that don't believe! Love & hope to all of you with this disease,Jen

[onthemendmomma]

I for one am very thankful for the expertise and knowledge that has been shared by caregivers. What this thread is about is the experience of young women and what it is like to be facing end of life issues at our age. I looked at your profile briefly, I think I noticed you are in you are in your 30's. This thread is about being around your age and facing the potential end of your life when your peers are just getting started with there lives.

The hell caregivers go through is no small thing and they do it willingly and lovingly...I don't think anyone disputes that. Being a caregiver is just different then being the patient.

And the "typical" OVCA patient is of an older demographic.

There is an emerging sub-set of women however who are younger, and whose response to the disease is somewhat different because of their age. We DO have better stats...we do have different problems....that is all this thread is somewhere to talk about those unique aspects of being a young woman with this disease.

[Beachwalker33]

Some of you know me some of you don't.I was my Mom's caregiver while I witnessed her fight her heart out.I learned everything I could about the type of Ovarian Cancer my Mom had.I feel that something good should come out of every painful experiance.I got her cancer free,with research,herbs,vitamins,and many meds I had to do to tons of research on,and suggest to her oncologist.I felt I learned all these things for a reason.She had no visible cancer,her ca-125 was in normal range,even her doctor was shocked,since she was diagnosed Stage 4,it came back very shortly.Though I have never had Ovarian Cancer myself,when my Mom was sick I felt ill,I literally felt her pain.Was that normal?We were very close,so maybe thats why I literally felt like I went through it also.So why shouldn't the advice of caregivers be excepted as a loving gesture and an effort to help someone else have more time with there loved ones and live a longer life?And you think I don't understand your pain,so not true! God Bless,Jen

[doicat]

Am I young enough to put my 2 cents in here?  I was dx last year at 47 and have a 15 yo daughter.  

When I first got on this sight last fall, I said something stupid about having the "bad" OVCA, Clear cell.  Someone, (probably Jan) popped in and said, "all cancer is bad"...no one gets the deuce here.  There is nothing Good about having cancer...the old or young, good or bad, people with kids or none.  No one life is more important than another.  Whether you are a young mother or a great grandma!  We all have things to finish.

I know that no one is ready to die…but we, those with cancer somehow, for some reason, have been given ‘notice’. We will all die sooner than we thought. NO one knows when they are going to die but we have been given a “best by” date.

Ever hear the joke: This couple that had been married over 75 miserable years just got a divorce…
Why? They were waiting for their children to die!

But, we all can’t just give up and die! We all, old and young, have things to finish, see happen, help with…. I’ve got a girl to finish raising. I want to see her go through high school and college, find a fulfilling career, fall in love, get married. I want to help her and advise her through her pregnancies, want to see her kids grow up. I want, want, want… We know we won’t be here forever, but we all want to FINISH things…see closure with our family no matter what our age is.

So what is the lesson here? What am I supposed to learn?

For now, I’m trying to learn to love the moments we have here with our loved ones. To thank You Lord for what we have been given. Hey, I’m not giving up here…maybe the struggle for wanting more is part of this lesson. Maybe you are teaching me to be stronger than I thought I was, to be wiser than I thought I was, to be kinder than I have been, to be more humble than I have been.

One thing I have learned very recently because of this cancer, is that He is my strength, He is my wisdom, and He is my comfort.

May we all find strength, wisdom and comfort in this battle.  And may we all join together and help each other fight this dreaded disease.

Peace to all.
Teresa

[Tybear]

I totally agree with Trudie...I couldn't have said it better myself.
No one was suggesting that those who don't have ov/ca shouldn't post on the forum at all - just on this particular post (thread). The title of the thread specifically requests that those who are "young survivors" respond. Had the post been directed at, say, caregivers, I wouldn't have responded because I don't know what it's like to be a caregiver.
I don't really see what the big deal is here...

[Ramsay14]

The MedHelp OvCa forum is for everyone!  All people who have had OvCa touch their lives.  We are all here to offer what we can, and to learn everything we can.  I don't think anyone disputes that.  It's just this one particular type of thread that sort of needs to be respected.  A young survivor thread.  We are a rare sub-group of OvCa.  We need somewhere to turn, someone that can hear us, someone who is experiencing what we are also experiencing.  That's why this thread was started.  A place to voice our terror and anger at this disease.  We were just a little blindsided by the "replaceable" comment.  It is not what we needed to hear.

[SimplyStar]

Who has the answer for this?   who deals with the "anger and deep feelings"  expressed by you?  Can a person express anger  constantly to just themselves?  No, it must be shared as it comes to the surface, can you hold your own hand, cry on your own shoulder, say those words of comfort to yourslves?  Do not push away those that love you, saying "you don't understand",  Believe when I say, we do feel your pain, we do know of your feelings of  the "what ifs" , we do not leave you, we stand by to help ease any hurt you have.   This comfort may come from a person that has been right where you are now,  or it may come from someone that loves you and wants you to know that you are not alone.  I have been a caregiver since I came to the age of reason,  most of us have, I can no more stop caring about my family and friends then you can.  MedHelp has been here for me for over 2 years,  with and through them,  I have been offered help and the chance to repay some of that help,  I have made my peace with my grief and will continue to offer what help I can to others,  because I know that is what Leslee would have expected me to do, she was a great caregiver,  I am not her, but I offer and give of myself to her daughters and grandchildren,  as long as I live I will tell them about the beautiful woman that loved and cared for them.  As dian says  , peace,  Marty