I'm really scared, can't stop crying

HavahJ · 02-12-2008, 06:50 AM

I'm so frantic about the liver mets and waiting to see if the chemo is working. I don't know how to figure out all the death stuff. I'm so alone. I had a single met for so long - I just didn't expect this. How do all of you stay so positive? Your religion thing? Anyway, I really need just pain support. Most people in my shape will be dead within a year, 2 at most. You people on the boards are the lucky ones. I guess I'm falling completely apart. HavahJ I don't know where or how to post it. I'm from Minnepolis, Minnesota and my email is HavahJ@aol.com.

suzan w · 02-12-2008, 07:14 AM

Dear Havah,
I wish I could jet myself to your side and give you a great big hug and let you cry your heart out!!! Take a big breath and breathe.... this is all really scary stuff. I am also a recovering alcoholic and have incorporated into my life the "one day at a time" philosophy...and that is my 'religion'!!! You hang in there,,, hugs to you and a kiss from my little dog, Mel!!! xox

MJo · 02-12-2008, 07:29 AM

I don't think you need to figure out the death stuff yet. In fact, nobody has been able to figure out the death stuff. Are you alone like no husband and kids -- like me. That's rough. Even with a support system we feel alone, because nobody is going through this but us. It's okay to fall apart -- I did -- as long as you look for help to prop you up until you are back to yourself again. Posting on this board is getting help. Keep posting, posting and posting. If there is a Wellness Community in your city, try it. I walked in, fell into the arms of the receptionist and started howling. They could hear me all over the building. I also called the Cancer Care Connection helpline in my city almost every day for a while and talked, talked talked about how terrified I was and how I felt I was going crazy. This is my prayer for you -- that in a month or two you will look back on this time and think "Whoo, I was really breaking down, but now that my liver mets are shrinking, I feel hopeful again." Please ask for help -- demand it in fact. Take more anti anxiety medication, eat a gallon of ice cream. Whatever gets you thorugh this period of uncertainty, which is the absolute worst! ! Love and hope to you.

Mgarr · 02-12-2008, 07:41 AM

(((Havah))) Sending you healing vibes, we're not counting on you going anywhere soon! With this disease, I think even negative thoughts creep into the most positive people and yes many tears but this is a great place to vent. You will move forward with good news about shrinking mets. Wishing you peace.

Mary

ita · 02-12-2008, 08:07 AM

Thinking of you. Although I am not in your shoes I wanted you to know that you WILL find love and support here. YOU are NOT alone.

Regards,
Gricel

Karen W · 02-12-2008, 08:19 AM

Havahj,

Where do you live? Why don't you pm me and I can look into some resources for you in your area. In Northern California we have the Wellness Community... maybe there is something like that were you live. I know you are really scared and we, on this board want to help, so please pm me so I can help you.

Hugs,
karen

Audrey · 02-12-2008, 08:45 AM

Havah, I'm sorry you're going through such a rough time right now, but please don't give up, many people survive years and years with liver mets--I met a woman at the CURE conference last year that was going on year seven with liver mets. She was trying a variety of treatments and taking milk thistle as a supplement. Sounds like you could really use a support group, I agree with the other posters that you might want to check out wellness centers in your area or support groups at your local hospital. When I was first diagnosed and the prognosis was "poor" I fell apart, too...planned my whole funeral, gave stuff away, walked around in a cloud of doom. One day I walked into our local wellness center and just poured my heart out and found so much comfort there. I also started taking really good care of myself--getting massages, etc. to relax and feel better. Finally, I know you're not a religious person, but I have to admit I did find a lot of peace and strength in believing that God was there with me for me to lean on & that we are never really alone. Finally, my doctor recommended an anti-depressant/anti-anxiety medication that really seemed to help me with my feelings of doom. (Paxil) Don't stop reaching out for help, I know you will find something that works for you.

SoCalGal · 02-12-2008, 08:59 AM

Maybe you live close to one of us. Right now - until you feel more steady - you need to be with someone most of the time. It's really hard to ask friends for what we truly need but most of our friends are happy to give it to us.

The panic at the realization that we might be dying is overwhelming and unmanageable. BUT BUT BUT those feelings will calm down. Everyone is dying. We are just painfully aware of our limited time and it's scary. I struggle against the fear every day of my life. I try different things on different days. Sometimes I am able to remain present and feel faith and hope in the power of healing. Sometimes I melt down like a small child filled with fear and wanting my mommy.

When I am at my worst I reach out to my friends or my guy - sometimes just needing to cry endless tears and have someone just be with me until the grief passes. That is really what we are going through - grief. Grief is a powerful emotion - it comes in giant waves often when we least expect it.

Havah - NO ONE knows what tomorrow holds for them.
My disease is not yet under control and it has been almost a year of stage 4. I too am greatly worried at times - what if - what if - what if? But I fight those fears everyday trying to focus on what IS. I feel fine. I look fine. The sun is shining. My children are healthy. I am surrounded by love and light. It's all a game of the mind. There are many wise words posted here. Print them out and tape them up. Remember you are not alone...

Please post where you live. A her2 friend may be near by.

Flori

sarah · 02-12-2008, 09:11 AM

Dear Havah,
BIG hug. Everything that the others have said is great advice. Don't give up. Cry and then go out and find a local support group as well as all of us on this site. I've met several amazing people in my life who had been given 2 months to live (brain caner, cancer everywhere, ALS) and guess what, 10 years down the line, they were still around. A best friend of ours has inflammatory cancer and is having serious treatment problems and we all though she would die first but her husband died suddenly in a freak accident, so it's the old, we could be hit by a bus tomorrow theory. we just don't know how long any of us have. Sso get back on the positive train and keep on fighting with the rest of us. However much time you have and I bet you have more than you think you have, you can still have a good life. Get that pain worked out - tell them to give you whatever you need for that. Also are you taking anti-depressants? that might help. Where in the world are you? You might just be near another member.
Big hugs and love
sarah

chrisy · 02-12-2008, 12:04 PM

Dear HavahJ,
You're wrong if you think "we all stay so positive". It is a daily, even moment by moment effort to keep that glimmer of hope alive and to focus on what IS (I am still living) in between worrying about the what if's (was that my last Christmas?). I can't even touch Flori's eloquence in expressing this, but I could sure relate to what she said.

You're not alone, although I sure understand why you feel that way. Even with support it is a lonely road. As for the unexpectedness I can relate: the diagnosis of extensive liver mets was completely unexpected following a pronounced "cure" of Stage 0 DCIS, then after 2 years of complete remission, I had dared to hope it would last forever - but it didn't. So now I'm working to get it under control again, hopefully for a long time. I still believe this is possible and for me, keeping that hope alive is important. In the meantime, guess what, I'm still alive and I choose not to spend ALL my time thinking about death. Because I'll sure feel stupid if I live another 20 years and waste every minute of it in fear and grief. Neither of us KNOWS how much time we have.

I agree with what others have said about seeking company of people who can relate, but if I were feeling as you do, I would also consider getting counseling from professionals who deal with this situation.

I really don't know what I can say to help how you feel, but I will share this. My husband and I were seeing the 2nd opinion doctor, reeling from the shock of the fresh diagnosis of extensive liver mets. He asked her "how can people live with facing this diagnosis" meaning, the horrific fear, grief, and everything else entailed. Her answer, in retrospect, was very wise. She said "you just do".

Your fears are valid, maybe you just need some help working through it.

Carolyns · 02-12-2008, 12:22 PM

Havah,

I am sorry that you feel so alone. As the others have said, we all feel this way at times. I am a single parent with a 9-year old son so I must put on a happy face for him but I fall apart regularly. I have sought professional help when I need it. Please find out what resources your cancer center has for you. There is also medication...I use valium on rare occasions when I can not pull myself together. For me, it seems to pass. If I get to a point where these emotions don't pass I will go on antidepressants.

Best wishes, Carolyn

BonnieR · 02-12-2008, 01:01 PM

Havah, I noticed that you posted at 5:50 am. I have found that it is, literally, "always darkest before the dawn". I have had most of my most dire thoughts in those early waking hours.
When I was first diagnosed I thought "well at least now I know what I am going to die from. Other people just don't know their destiny". But now I realize I don't even know THAT! I can get hit by a car tomorrow.
You have been given some really helpful suggestions here. Both practical and emotional. I hope that you no longer feel quite so alone and that you find comfort and support from some of the sources suggested.
Like Suzan, I am a recovering alcoholic and have found that our efforts to live "one day at a time" has been a real gift in this journey.
I know it is hard, but keep the faith.
Bonnie

tousled1 · 02-12-2008, 02:38 PM

Havah,

I feel the fear in your post. We are all afraid and it's perfectly normal to feel that way. I thought I had this dreadful disease beat and WHAM - mets to the lungs and brain! It's difficult to keep a positive attitude and stay strong but somehow we manage to put on a happy face and carry on. I wish I could just reach out to you and give you a big hug and let you have a good cry on my shoulder. I know what keeps me going and that's my one and only grandson. I look at him everyday and tell myself keep fighting. Perhaps an in person support group or even professional counselling would help you. Ask you oncologoist office if they have someone on staff that can help you deal with your fears. I know my oncologist has a physcologist on staff and I'm free to make an appointment with him at any time. I will keep you in my prayers.

Mary Jo · 02-12-2008, 04:41 PM

Dear Havah.....I can't add anymore to what any of these wonderful people posted to you. You have my support as well. I, too, wonder where you live and I wish that I could live close bye so I could come to help you. For now though, I continue to pray for you dear "sister."

Love & peace I pray,

Mary Jo

Lori R · 02-12-2008, 08:16 PM

When I become overwhelmed...you know...that feeling that you are drowning in fear, I come to this location and I......

I come to this site and I read (and reread and reread again) the positive posts of women on this site and the progress that is being made via new trials. The updates of the generous women on this site provide me with hope for new advancements.

I come to this site and I read (and reread and reread again) the posts of women that have been NED for far longer than Dr. ever would have estimated.

Then I leave, encouraged for the moment and make every effort to focus on this second and nothing more.

It is VERY difficult...thank goodness for all the support found here.

sassy · 02-12-2008, 08:38 PM

Havah,

Please know that you have my support as well as all the others here. I know your diagnosis must be a shock and difficult for you to deal with. I would urge you to find support and help thru your oncologist or another avenue. Counseling and/or medication could be invaluable to you at this time.

My thoughts and prayers are with you.

Bill · 02-12-2008, 08:58 PM

Hi Havah, the situation you're facing is very daunting, but as many wonderful, strong women here have posted, they have lived for many, many years with liver mets. You have stated, to paraphrase, "but the women posting on this site are the survivors, etc." One very, very important thing to consider, you are very lucky, yes lucky, to be dx'ed with liver mets in 2007 or 2008, versus what alot of these women here have faced, dx'ed in 1995, or 98 or whatever year. I know you're scared, but dammit, we're all scared. Cancer research and treatments have come a long way, and are quickly approaching a point where there will be a cure or at least a chronic maintenance type of approach. You can be one of the survivors posting to the newcomers years from now and telling your story, like someone said earlier. Also, from your post, do you need "pain" support or "plain" support? Your dr. can certainly do better if you're in pain, and like the women here have said, come here anytime for advice, and venting, and let us know where you live, maybe someone is nearby, or can get there to help you. Love and peace to you, Bill

Becky · 02-12-2008, 09:03 PM

Dear Havah

Cry all you want to, scream and cry. It is scary and I know I would feel the same way you do. You have gotten good advice here on the board. Now you have to go and do the work of getting back to NED. I am not sure what drugs you have already been on or what supplements you do, exercise?

I will say that from the 3+ years I have been on this board, many of these women have also been here who have battled Stage 4 disease for a long,long time and I truly believe you can too. If they can do it, so can you. I know you can and you will. What is your oncologist doing for you? What chemo will you go on? How confident is your onc? If your onc isn't giving you confidence, change! You need someone who understands and accepts that his job is to get you back to NED and that he needs to do this and keep you well. It can be done. It is his job and if he is giving you vibes that he is not up to the task and that he will fail, he has a huge problem. You know it can be done because Andi, StephN, Irene, Flori and others have done it (sometimes more than once). You will too. Get other opinions. See what others have to say. Get that port put in and get going. You have work to do to get well and you have work to do after you do get well (or you wouldn't want to get well as much as you do).

Let us know all the doctors plans and let us know what you are planning to do when you are NED (vacation? party?). I like vacations best - you don't have to clean your house before or afterwards!

Joanne S · 02-12-2008, 09:35 PM

My heart goes out to you Havah. It's horrible to feel so down, alone and scared and helpless with this disease. You sound so down, there is only one way to go and that's up. I glad you recognize this and are looking for support. Take it one step at a time. Many of us have felt just like you. Here's a big virtual hug!

May it comfort you to know that we understand and we care!

You are in my thoughts and prayers!
Joanne

Sherryg683 · 02-12-2008, 09:39 PM

You are not alone. My prognosis from the start was not good, stage IV also. Yet, here I am 2 year later NED and praying to stay that way, fearing that the cancer is waiting for me to get comfortable so that it can rear it's ugly head again. Fear of death, yes, I know that feeling too. It paralizes me sometimes. I have had such panic attacks that I could not hardly breath. We are not all brave, we are human and no one wants to die. I don't let anyone see what I go through in private, it's a battle I feel that I pretty much fight alone. My faith in God does help, but even that is a big unknown. I cannot be certain what awaits behind that curtain and I'm not ready yet to find out. Having a young child just adds to my desperateness to stay alive for her. I don't know how we get through these rough times...we just do. We have no other choice. I remember those days when I was on chemo and the not knowing whether it was working or not like it was yesterday, I call it the "black hole". I honestly felt like I had been swallowed by it with no signs of light. I am watching my brother go through what will probably be his last days. There has been nothing that has worked for his melanoma. I want to tell him something that will make him feel better, but I can't think of anything. All I can say is that hopefully there's a better place for us to go when this life ends, there must be. I'm sorry I don't know how to make you feel any better, it's hell that you are going through right now. I do hope that you have a good response to your chemo and that it puts the cancer back in check. In the end, that's pretty much all that we have ..our hope and our faith...never ever let go of that. On the medical side of things, are you on any sort of anxiety medicine. I know it's not the answer you want but it did help me get through many days I thought I would not make it through. I still rely on ambien to sleep, I couldn't get a wink without it. Please know that the women on this board do know what you are going through, it's the one thing we have in common that we would rather not have. ...sherryg