Fighting for hope...............

I haven't written anything for quite a while but I am always reading other discussion and I do gain alot from sitting here "eavesdropping" on everyone's discussions and the support that is offered. Since diagnosis in Sept 08 of Stage 3c Grade 3 Primary Peritoneal Cancer I have completed my surgery (feb 13/09) and am going to have my 7th of 8 chemo treatments next week. The surgery and past chemo have gone very well and although this has been a huge learning curve for me to understand everything about PPC all the doctors "seem" happy about my progress. So why am I so down..........................

My mother asked me the other day if I wanted to die at home or the hospital. Everyone wants to have a big party (my birthday coming up) -- those family members (brothers) that never call on my birthday all of a sudden want to travel 300 miles to see me. They have all done their research (internet) and have decided that I have 13 - 24 months to live, this is what my mother has told them. She also bought a book on the end of life and wants to send me a copy. I HAVEN'T EVEN FINISHED MY FIRST COURSE OF TREATMENT. I am getting depressed and I don't know where to turn now.

I confided in my Aunt (mothers sister) for the longest time and she was always positive and kept me positive, now all of a sudden she never asks me questions other than "how do I feel". She has helped alot since diagnosis in Sept but it seems as if a light switch was pulled and now everyone has resigned themselves to this fact of my demise already. My aunt hasn't travelled for over 20 years as a result of a medical condition. She now wants to come visit me over my birthday with my mother.

How do I handle this. I have two treatments left (at this point) and am trying desparately to stay calm and positive (for myself, my husband and my 2 - 14 year old girls). I would like the company over my birthday but i am not sure if my mother and aunt are the "medicine" I need.

I am sorry for this glum email. I do not know where to turn and who can really understand this other than all of you on this website. I feel very alone and a huge burden right now. I don't know how to get past this. I have started to see a counsellor and after only one visit I can't wait to go back, but my next appointment isn't for another week. I feel like I should campout in the office for about a months worth of visits and maybe just maybe I will be thinking straight------- or not!!

By mommasbaby
Posted April 4, 2009 at 2:50 am
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Hi Ver,

My mom is getting her biospy Monday. She had asked me to phone her aunt (they grew up like sisters) to let her aunt know she was in the hospital with a tumor. All of a sudden my aunt, her daughter, and my mom's sister all piled in a car and drove about 700 miles to visit for 20mins. After I had said we don;t know what the mass is, we just know it needs to come out. I mean really? My mom's sister last spoke to her about 16yrs ago and my aunt is 83 years old. I haven't seen these people since I was 13 at my grate-grand-mother's funeral - I'm turing 33 this year.

I asked them why so desparate? Why make her think its doom? They didn;t have an answer and my aunt did not stop crying.

*sigh* I'm so sorry that they are grieving (your family and mine). My personal opinion is that our family members are preparing themselves and just not having rational thinking about what they are projecting - their fears.

I am SO proud of you. I am not grieving you. I read your email and all I saw was hope and inspiration. You have done such a fantastic job getting through those first rounds of Chemo. You have done such a good job getting though those tough days when you didn;t feel good. You have done such a good job reaching out to get the support you need. I'm glad you wrote that email. It helps to remind me of MY actions when I speak with my mom.

Each day is yours. Each day is a new opportunity for greatness. Each day has a moment that we hope people take their heads out of their backsides and pay attention! *wink* Maybe your mom, aunt, and brothers won;t take their heads out of their bottoms tomorrow - but then again maybe they will. :)

Tomorrow is the first day of the rest of your life lady! Be sad! Be angry! But don;t be the one that gave up. I told my mom and her family I KNOW she will make it becuase she is too full of piss and vinegar!

I hope I did not offend you with any of my words - or bore you! I look forward to seeing how tomorrow goes for you!

Love and light

By momanderson920
Posted April 4, 2009 at 5:15 am
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VER, I could not sleep so came to the site and found your post. I am very much where you are right now as I am losing hope. I went into remission after July 14, 2008 and though I suffered several dental infections and my immune system was not up to snuff, catching every bad cold that came down the pike, I was in remission. I suffered some pain early in my diagnosis from the inoperable periaortic lymph nodes but the pain was localized and bearable. I had other struggles with my kidneys and weakness but nothing that the cancer seemed to be causing. Now in the past 10 days to 2 weeks I have began experiencing increasing levels of pain in my back and pelvis plus am experiencing some shortness of breath which are all not very good. All of this came on very suddenly which seemed positive at first since I rationalized that surely the OC would be a more gradual thing. Well, now I am sure that that is not the case. I worry now that I may have even a secondary cancer or at least spread to other organs based on the locations of my pain. Now it is becoming a harsh reality of what the outcome of this may be. My children are terrified and I am too to think I may leave them so young....not as young as some of you, but still too young to lose their mother.....ages 28, 23, 20. So when I read your post I felt like I could hold someone else's hand in the same boat and not feel so alone. I like you am going to fight tooth and nail and continue to pray for a turnaround, but I am mighty scared right now. Thank goodness I have my God. But in your case even with the prognosis you have been given, many do beat the odds and live much longer than the statistics so don't let your family destroy your hope. You could be one of the better statistics...someone has to be. Hang in there. And at least we are not alone in this.

By CATSMEOW
Posted April 4, 2009 at 5:47 am
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Sounds a little like my mother. She was never the cuddly how are you doing type growingup. Always concerned how clean the house was.Newver wanted friends of my to sleep over or have them over.In a way she is a selfish person(sorry mom)So I wont get into it all.Anyhoo, after my diagnosis she called me every day asking How are you feeling?this was when I got home from surgery.After 2 weeks I said enough already Iam fine, thinking in the back of my mind why all of a sudden the interest in me?SO, my sister is a nurse and I suppose she gave her the stats on me, So now I feel like the walking dead.I hate it.Well my ca has slowly risen in the past 4months to 123 and I have not told them yet.Only because of the phone calls always starting with How are you feeling.WEll I feel fine other that every hour of the day even though I feel positive, I know I have cancer.Unless they have had cancer, they dont know how to handle it.I can relate to the family not there then all of a sudden, they are supportive.Its their way of dealing with it.I suppose too it is to relieve any guilt that they may have.Also, the time frame give as to when your time will come, its bull.Live your life to the fullest and enjoy the company of family(even if they were not there before)because no matter what they are family and they do love you.Keep Positive.

By katelynsmamaw
Posted April 4, 2009 at 7:09 am
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I know what you mean about people coming around that normally didn't. I was receiving phone calls and I love yous from some people for the first time. But it kinda settled down once time went by and life started getting back to normal (I guess it'll never be normal again though).

Let them all know you are going to be here a long time and stop treating you like your on your deathbed. We ALL know that this disease is probably gonna be what takes us, but I'll be damned if I'm just gonna throw in the towel and neither are you! Tell them your not giving up on yourself and neither should they! Your gonna fight this, girl!!
We still gotta lot of living left to do!!

By Teresa56
Posted April 4, 2009 at 8:58 am
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My Mom's sister came to visit 3 times in the 16 months my Mom lived after surgery for OVC, that was more times than she had been in 10 yrs put together. Smile, embrace them and say right up front that you have no intentions on giving up on living but your welcome their visits. As for the birthday party I can tell you what we did for my Mom, we knew she was too weak for some big shindig so we invited only her Sunday School class to "drop in and help us celebrate Mom's 75th BD. Drop in meant that came, visited long enough to have cake and finger foods, talk with Mom a bit and leave. They had a 2 hour time frame to drop in and Mom was able to sit in her recliner and rest when no one was there. It was a serve yourself affair so my siblings and I could enjoy the event with Momma. It worked out great and Mom really enjoyed it and was not exhausted when it was over. My Mom was at a very weak state and was gone in less than a month but we (her and us kids) celebrated everyday she was here as if it was her BD.
Stay positive and try to remember they are just as afraid as you because they don't want to loose you ever. They love you and are struggling with a battle too.
I will say a special prayer for you, smiles are contagious, give them a big one.
Huggs, Teresa

By abbaschild
Posted April 4, 2009 at 10:39 am
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You seem to have the opposite problem that some of the ladies have...some relatives just don't get the seriousness of ovca and think "Oh, you're done with your chemo so you must be fine and dandy!" and then your have the ones who think you're ready to drop today!

I remember one of the Little House On The Prairie shows where an old lady's friend died who hadn't seen her family in years and always cried because she missed everyone so much and they wouldn't come to see her because they were always so busy. After she died, they all came to the funeral. So, this old lady decided to plan her own funeral and got "Charles and Caroline" to help her and they told all her children (one she hadn't seen for about 10 yrs.) that she had died and when the funeral was. So they all came and she was there all dressed in black with a veil over her face so they didn't know it was their mother walking around. How happy she was to see them and her grandchildren and hear them talking so fondly of her! Then she got mad! And whipped off the veil and to their shocked faces yelled at them for only coming to her funeral and not coming when she was "alive"!

I always remembered that one show because I thought it was so true! SO! Now, they're all coming to see you! That's WONDERFUL! Have a great time! Show them how well you're doing and that you have no intention of giving up!

I also am stage 3C. I had my surgery Dec. 2007...finished chemo last May...and with the good Lord's help, I will survive this :) I feel healthy and happy and plan for the future. The Lord gave me this verse years ago, "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future." It's in Jeremiah 29:11. I have it on a plaque at my front door.

So, you go ahead and enjoy seeing everyone at this family reunion and be blessed :)

Hugs and blessings :)

By adsiemens
Posted April 4, 2009 at 10:44 am
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I think you need to talk with your mother and the rest of the family. You need to sit them down and explain that you can beat this and you need positive people in your life that are going to help you along the way. I am very lucky that my parents have been very supportive thru out my treatments. I was diagnosed with stage 3 ovarian cancer in Aug 08 and have just finished my 6th round of chemo. They also have found spots on my lungs that they are now trying to find out if they are cancerous. I feel that sometimes looking at the internet is not always accurate. People are living longer with this disease. Also I think it depends on your age and how much you fight for it. I think for your birthday you should be around people that are going to make you feel strong and powerful!!

By Martha2
Posted April 4, 2009 at 10:53 am
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Maybe you already have been but you need to be absolutely direct with them. If necessary take your Mom with you to the doctor and have he/she explain to her your prognosis. My doctor said right at the beginning that scientific information on the internet is always lagging by several years so no one should use that for figuring out a prognosis. Plus there are always patients who are on the positive side of the percentages. If 50% die, 50% live - people always forget about that. I was diagnosed with Stage 3c 4 years ago; my doctor told me the average prognosis was about 2 1/2 years and that my risk was high but he keeps plugginf along always finding me new treatments. I've had 3 recurrences and am currently in remission. While you might not want to exactly be making plans for twenty years from now, it's a great idea to think of making plans for 6 months -one year down the road. If you have a recurrence, you get to start all over with it. Tell everyone, yoursef included, to just take it one step at a time. If things start to go wrong, there will most likely be time to "see" everyone. It's a good wake up call to see friends and family more often and not let time slip away but people don't need to get crazy about it. And like someone wrote, your Mom is most likely just preparing herself but she shouldn't be telling you all that and pushing you to make end-of-life decisions. You will do that when you're ready. Keep seeing your counselor and my best wishes. Hang in there. Prove 'em all wrong and live a loooong time.

By youngmom
Posted April 4, 2009 at 10:59 am
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Hi Ver,

I'm sure your mother and family are very devastated about your illness, but they don't seem to realize that some of their actions are taking away your hope. When I was diagnosed in October 2007 (stage IIIC at the age of 49), my mother was my biggest cheerleader. She told me she didn't care what the statistics were, that I wasn't going to beat this. Her constant positivity and encouragement really helped me. I also had a lot of extended family members and friends show a lot of interest in seeing me and calling me. I didn't mind that - I appreciated it. Whether we have cancer or not, life is short, and staying in touch with the ones we love is important. However, I made it clear to everyone that death was not an option for me, so it was not discussed. My family and friends knew that I was approaching this with a fighting spirit and was expecting to live a long life. It is very premature for your mother to be discussing where you want to die. She apparently doesn't realize what she is doing. Maybe your husband could talk to her and explain to her that you are approaching this with a lot of hope and that she needs to be hopeful and supportive of your optimism. Good luck !

By MaryW
Posted April 4, 2009 at 2:56 pm
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I won't repeat what others have suggested, other than your family is probably scared out of their wits for themselves and for you. It is so true that family often are more scared than we are because we are figthing on doing everything we need to stay alive. Do everything you can to maintain a positive attitude and that includes sharing your concerns here when you're feeling scared or down.

I remember shortly after surgery over-hearing a close friend saying that she did not think I "realized the gravity of my situation." I was SO angry and thought, "I ain't dead yet!" I am celebrating my 5th anniversary of life since diagnosis on April 20th and have been on chemo the whole time; never went into remission. And still I am not dead yet!

Do what you need to do and ask them support you in a positive way. You ain't dead yet! Mary

By FavoriteAunt
Posted April 4, 2009 at 3:02 pm
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You need to reign in your family and let them know you are a fighter, and have no intention of giving up. I'm also IIIC and had a 6 year remission after my surgery and first chemo - so do NOT give up! Yes, I've had 2 recurrences, but I still fight and intend to win and it's been over 8 years now.

Your family needs to be educated on the many treatment possibilities available, and that you can have very long life. Do not let them think this way! Like my onc. always says - live your life and do not read statistics!!!

By verlinda
Posted April 4, 2009 at 3:03 pm
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Hi, Ver,

My tumor was found through a pelvic ultrasound seven months after my sister died of ovarian cancer. My husband was working out of town that day. I was going to be noble and not tell him until that evening when he arrived home. About 2 or 3 that afternoon, I thought, "The heck with this!" and called him. Of course, he started searching the internet a few minutes after he got home. Two days later, we took a copy of the ultrasound to the radiologist who lived in our neighborhood. He never used the "c" word, but insisted we see a gynecological oncologist, that we push aside every obstacle in our path to have surgery as soon as possible, and that we demand an open incision rather than a laparscopy, so we pretty much knew then it was malignant. For the next week, (It was two weeks before we finally saw a gynecological oncologist.) my husband would walk past the door of whatever room I was in, catch me eye, shake his head and say, "It's hopeless.

Finally, I pulled him into our bedroom and said, "You believe whatever you want to, but you may not say those words in my presence again!"

Others have given you excellent advice. I'll add my two cents. Print two signs on your computer, and stick them on the inside of whatever door your relatives will enter. One sign should read, "Abandon hope, all ye who enter here." Print the source. I don't remember which prison it was, but just below it in smaller letters, print "sign above a prison entrance." The other should be the verse from Jeremiah another person already quoted.

No, make that three signs. The third can be the quote I stole from one of our maintenance supervisors' office, "Everyone brings joy to this place; some when they enter, others when they leave."

Then print a sign to put on the doorway of one room in your home (not a very welcoming one), that reads Prison. Print a sign where you want to spend most of your time that says Hope Place.

As each family member enters, you or someone else can meet them at the door. Hug them, say, "I'm so glad you came. Now, before we take another step, pick a sign. We want to enjoy your visit, so if you pick Jeremiah, come on where Ver is and let's enjoy catching up. If you want to imprison Ver with her cancer, sorry, she's not living there, so you may want to visit with the relatives who've chosen to live in that prison without her. We hope you visit with those of us living in hope."

This is the one time in your life you get to say what you want without being overly concerned about offending anyone.

I was very blessed that my husband chose to honor my request. He chose to believe the gynecological oncologist.

When we first got the news, we called everyone we knew from all the places we've lived and requested their prayers. I'm convinced that's why I've had 16 cancer-free months after finishing chemo. I was stage 2, not 3, but I had a clear cell tumor--very aggressive type. There are ladies in my Louisville support group, and ladies in this wonderful online support group who've lived years past the "odds" they were given. They chose not to accept that twisted "gift."

Come vent any time. If you'd like my phone number, email me a request to be a friend, and I'll give it to you.

Blessings.

By DTMEDIC
Posted April 4, 2009 at 3:05 pm
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You've gotten alot of good advice, and I really can't add anything to it. I'm sure you're doctor has told you that the odds are not terrific that you will be 100% cured of this cancer. Those are the hard realities of this disease, but it IS very likely that it can be managed and controlled for a very long time. I'll use diabetes as an analogy. Left unmanaged, diabetics would die too. Having said that...there are people who actually do BEAT a later stage cancer; completely cured...so why couldn't you be one of those? Somebody has to be?

By verlinda
Posted April 4, 2009 at 3:07 pm
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Ver,

P.S. All of us who've been through this with those negative, well-meaning people who love us are so mad for you, we could just spit!

Hang in there!

(I have this mental picture of Christ driving the moneychangers out of the temple, but this time he's driving out people who unwittingly try to pull you into despair!)

Blessings, blessings, blessings!

By Rainey
Posted April 4, 2009 at 3:09 pm
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Momanderson, you can't give up hope - not now. You need to get your CAT Scan done and see what this pain is about. There are just so many treatments out there that there is always hope. From what I've read on this site reoccurrences happen but its not the end.

Like I said I'm having my first reoccurance - yup its tough but I don't feel its the end.

By momanderson920
Posted April 4, 2009 at 3:35 pm
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Rainey, thanks for your encouragement. I think having this pain with it as really frightened me. I am praying it is either possible to surgically treat whatever is in there or the chemo can get it before it does any bad damage. Most of my friends have had recurrences without pain so I don't know what it means to have such pain with a recurrence. I am going to try not to worry until I get the CT results. Please keep me in prayer.

By zircons
Posted April 4, 2009 at 7:18 pm
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Boy, I would get rid of them if I could. Maybe they should go online with this site to hear about us. No one can predict when any of us are dying. There are lots of women who have lived for years with this disease. Sure, there may be recurrences, but we keep pushing to remain on this earth. You have to sit down with your mother and explain to her what the facts are regardless what she has read on the internet. All the facts are not correct. Why can't we all be the ones who survive for many, many years to come. Would you like one or some of us to speak to your relatives? Their attitudes really irk me! Maybe you should let them all come for your birthday and sit down with them to talk about this disease and tell them about us.

Welcome to Inspire!

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