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i'm a survivor- lets be freinds

flourgirl
Posts: 5
Joined: Oct 2002

hi, gee, where to begin...finally to find a group that knows where i've been and what i've been thro...... lets share our feeling, outlook and our stories and become freinds....someone who can really relate to our needs..our feelings..our moods...! so type me a few and i will get back to you. please don't keep me waiting too long, life is short.

patti36
Posts: 7
Joined: May 2002

I'M A SURVIVOR TOO.....ISN'T IT GREAT TO SAY THAT!!!! I will be a 2 yr. survivor on Dec.2.mine was a stage IIc. I feel the same way that you do...we need someone that we can relate to, share to and be friends too!! I'd like to welcome you to this wonderful group of people.....just like us!!!! Hope to "hear" from you soon.....@->--Patti--<-@

debg
Posts: 2
Joined: Nov 2002

Hi Elishaw,

I just signed onto this site and I'm a recently diagnosed/operated on ovarian cancer "person". I am beginning my sixth week of recovery. The doctors assured me that got the tumor and some small residual sites in the pelvic area. I'm feeling better each week and am scheduled for chemo next week but am seriously considering putting it off until my body feels even stronger to fight that battle. Did you undergo chemo? How long ago did you begin your journey? What did you find helpful when going thru it all? And you are absolutely right about life being short....but it tastes a lot more succulent too doesn't it? Take care,
DG

chrismalossi
Posts: 3
Joined: Dec 2002

I had a hysterectomy 11-9-02 and was told that they removed a cancerous tumor and treatment was recommended starting only 4 weeks later. Yikes! I understand from a friend (who is a nurse -- best ones to talk to) that treatment 4-5 weeks after surgery is a good move. Apparently there's a theory about oxygen exposure and everything getting all stirred up during surgery that makes it critical to do it sooner better than later. Your impulse was the same as mine, I'm thinking, give my body a break --- I just got out of surgery! But, I would seriously consider now rather than later. It won't get any easier later anyway, so why think about it, get it over with.

jerre
Posts: 1
Joined: Jan 2003

Hello, I am also an ovarian cancer survivor. I did take the hrt drug, prempro. Idon't want to try and convince you not to do the chemo therapy but If you are feeling much better my advice is to continue with a change of lifestyle and eating very very well. I think you can be intuitive about what treatment you want to do. I didn't do chemo and I am getting healthier all the time and now it has been 3 years. Be happy and enjoy every moment, Friends Jerre

clightfoot
Posts: 7
Joined: Feb 2003

I've read your message a few times and would be interested in knowing how you are doing? My daughter wanted me to wait on chemo until I felt better but I went ahead and started the week after my surgery. I didn't want to put off the inevitable. I am now 21 months post surgery and 16 months (I think!) out of chemo. I feel fine but worry all the time.

susanmac
Posts: 1
Joined: Nov 2002

HI MY NAME IS SUSAN I AM 42, I AM SCHEDULED FOR SURG ON TUESDAY THE 26TH. I WORK IN A HOSPITAL(IN THE O.R) EVERYONE I WORK WITH SEEMS TO KNOW MORE THEN ME. MY GYN KEEPS SAYING WE WONT KNOW ANYTHING UNTILL WE REMOVE THE LEFT OVARY WHICH HAS A 8.5 X 4.7 CM CYST W/ NODULES AND BLOOD FLOW. THEY WILL DO A FROZEN SECTION AT THAT TIME AND THEN A POSS.TAH/BSO. I HAVE BURRIED MYSELF 5X'S ALREADY. EVERYONE KEEPS SAYING DON'T THINK ABOUT IT. HOW CAN I NOT. PEOPLE I WORK WITH KEEP SAYING IM PRAYING FOR YOU. I FEEL LIKE EVEYONE ALREADY KNOW BUT ME. I AM SO SCARED. IM TRYING TO BE SO COOL FOR MY FAMILY, BUT ITS KILLING ME INSIDE. I WAS MY DAD'S CARE GIVER FOR 9 MONTHS(LUNG CANCER). I WATCHED HIM SUFFER AND DETERIORATE. HOW DO YOU TURN YOUR MIND OFF. SORRY IF I AM JUST GOING ON AND ON.
SUSAN

crtsang
Posts: 105
Joined: Nov 2000

By now you have already had your surgery and know the outcome, but I wanted to offer you support anyway. When it's your body, it's really hard (impossible?) not to worry about what ifs, but doctors really won't say anything until they have enough information to be sure. The people who say "don't think about it" just don't know what it's like.
I hope that your news after the surgery was good.

Carol

alaskagrl
Posts: 2
Joined: Feb 2004

Susanmac...

I am having surgery for a 13x8x7cm ovarian mass on the 15th of March. I'm scared, too! I have always been healthy, and now this! And I watched my mom die a horrible, painful, death from cervical cancer 8 years ago. There is NOTHING wrong with being scared, or thinking about it, or screaming, or crying! Get out your emotions, then you will be better able to prepare yourself mentally 'just in case'. It is more the not knowing that is bothering me. If it IS cancer, I can deal with it! You can deal with it. Think about it, and do what you must to consider your options if it is, but also take a break once in awhile and do something fun! I tell myself not to worry until I know for sure, just focus on one day at a time. Sharing your feelings here was a great first step! I hope it goes well for you....keep me posted!

Rebecca123
Posts: 1
Joined: Mar 2004

Dear Susan, I had Ovarian Cancer in 1975 Stage IV with a spread in my lymph nodes in my neck. The Doctors in Chapel Hill NC gave me a 5% chance of living 5 years. I was scared too, but the best thing you can do is turn your life over to our Heavenly Father and take one day at a time. I was 28 years old and had only been married 7 years. We had one daughter who was 5 years old when I got sick. I had a lot of prayers going up for me and just kept my eyes and faith on Jesus.
It will be 29 years on October 3 of this year since all this happened to me. DON'T GIVE UP!!!
If you need to talk I'll be glad to answer any questions you have. I took 2 years of chemo - back then they didn't have the treatments they have now. My doctor in Chapel Hill said I was his miracle patient. GOD IS STILL IN THE HEALING BUSINESS TODAY...SO PLEASE PUT YOUR TRUST IN GOD.
I WILL BE PRAYING FOR YOU AND EMAIL IF YOU HAVE ANY QUESTION. IN HIS HOLY NAME. REBECCA123
MY EMAIL IS dthreatt1@carolina.rr.com

mallison
Posts: 1
Joined: Jan 2003

Hi, I'm also a cancer survivor. At first, I didn't want to say this. For years, I didn't want to say I was a cancer survivor. When they found my tumor, they thought they were just cleaning up endometriosis. Everything happened so fast and the oncologist said he was afraid I had cancer in my colon. Before surgery, I signed permission for a colostomy (sp?). I was very lucky. When the surgeon went in, he found only two tiny nodes of cancer less than 2 millimeters wide. He said that if he had done the original operation, I would be considered Stage 1,but because he found the 2 floating nodes, the cancer was considered stage 2. At first, I was so thankful that that was all there was and I still had my life. I went through the chemo with the most positive cheerful attitude that anyone had ever seen in the hospital. I kept comparing it with a bad bout with a serious illness that gets treated and is over. I am only 40 years old. I had cancer at 37. I just recently got married and all I keep thinking about is the children I wanted. I should be very happy - but I'm going through emotional highs and lows. Is anyone else going through this - or is it just me?

darlene61
Posts: 1
Joined: Jan 2003

Hello, i am in the middle of chemo, ovarian, had surgery 11-21-02. It would be nice to talk with others that understand. How I feel, moods just someone that knows.

Dianebell
Posts: 1
Joined: Feb 2003

Hello, I know how you feel, I went to the emergency room on Dec 26 1998 had a hystorectomy, where they found a tumor, I started Chemo in Feb. for 6 months and then went back to work at the end of June. I feel good now / Unfortunately I lost my job in April or 2002, so now I have another obsticle to overcome. I am scared because I will have no insurance soon, I am haveing trouble finding a anothe job, too much competion I guess. Wish you well

mmouse
Posts: 1
Joined: Mar 2003

Hi Darlene, I had my surgery on 3-22-02. Spent my 62 birthday in the hospital. I finished my chemo on Aug 1st Had 6 rounds of chemo 1 every 3 wks. I was told I tolerated it very well, but didn't really know because I didn't know anyone who had this type of cancer and the carbo/taxol treatments. I only experienced some aching of my lower legs for the first 3 treatments, had no nausea or vomiting. Have some numbness in my fingers and toes. But I really was not a very pleasant person(for my husband)to be around, I was mad at the world !!!! and I took it out on him. (poor dear) he was an angel to me though. I since have gone back to being sort of the same person as i was pre cancer. Guess I never will be the same, but I am much nicer now.I hope you are doing well with your treatments,and would like to hear from you. mouse

clightfoot
Posts: 7
Joined: Feb 2003

Hi! My name is Cindy. I am 53 and approaching 21 months since my surgery for Stage IIIC Ovarian Cancer. My cancer was contained in the abdomen with a "tiny" occurence on the fringes of my diaphragm. Chemo for 6 months. CA125 normal since week 4. My story goes back to polycystic ovary syndrome and YEARS of hormones. I feel great now but seem to be overwhelmed by every little ache and pain I have. I'm told that now that I feel better and don't have to spend every waking moment being sick - I am having normal post cancer feelings. What do you think? I have great friends and a wonderful husband and kids but they are "outsiders". I am glad to have found you.

Oby
Posts: 5
Joined: Mar 2003

Hi, 'flourgirl,' I just got on this website this morning. Saw a couple of TV commercials for it and decided to check it out.
I just read your email and YES, I would love to become one of your 'friends.' I, too, feel the same way -- that it's wonderful to find a place where I can talk with other women who have/had ovarian cancer in one form or the other.
I first found out that I had, as the oncologist called it then, intra-abdominal papillary carcinoma, which I was told was a new and rare form of ovarian cancer, in July 2000 (I was living in Phoenix, AZ at the time).
I went through six treatments of carboplactin/taxol which finished up in December 2000. I moved to Seattle so I could be around trees, water and a LOT of nature in order to 'feed my soul,' and for the following year I felt absolutely marvelous, with my CA-125 staying at 6.0-7.0.
In November of that year I moved to Illinois, and in January 2002 the cancer came back. The oncologist that I went to told me that because it had come back so soon it meant that it was now incurable and that it would keep reoccurring.
I began another round of the same type of chemo. However, during the 2nd treatment I had an allergic reaction to the chemo )or so my oncologist told me, and I was switched to cisplatin/taxol since it was in the same 'family' as what we'd been using.
Right after my 5th chemo I decided it was time to change oncologists. Why? Well, the oncologist that I had had in Phoenix was so kind and understanding. I could talk to him and he'd listen. This oncologist that I had here was not kind or understanding, and I could not talk to him and feel that he listened. Instead, he never sat down, never looked me in the eye, and was always looking at his watch.
I 'interviewed' another oncologist, and thank God, I found exactly what I was looking for! So I had my 6th chemo with my new doctor, and I finished my last treatment in May, and once again, I felt marvelous -- until August, when my cancer came back -- again.
Since I had begun to develop neuopathy in my hands and especially my feet, my oncologist told me that we could no longer use the same treatment. I was given several other choices and I chose Topotecan, which I am still using.
Topotecan is given on a 3 week cycle, meaning that every 3 weeks I have treatments every day, but thank God, they only last a 1/2 hour and there are NO after effects, except a wee bit of tiredness.
After my week of treatments I go in the following Monday for blood tests, and the following Monday I have blood tests, along with a CA-125.
With the Topotecan my CA-125 has only gone down to 67.7 (at last count), and my oncologist keeps telling me that he isn't that concerned with the 'numbers,' but more about 'how I'm feeling,' which so far, as been good.
When my cancer came back the 1st time (January 2002) I was really shocked. You see, after having had a year of feeling 'marvelous,' I had convinced myself that I'd beaten it! It took me almost 2 weeks to get over the shock, and by that time I'd come to accept the fact that this ain't gonna go away so I'd better deal with it.
I started praying for 'acceptance' of whatever comes, and about 3 months later I'd found that 'acceptance.' I'm so grateful that I have a deep spiritual foundation.
I feel that I should also add that I turned a VERY YOUNG 70 on January 23 of this year, and that since moving here I've been living in a large studio apartment in a 55+ subsidized apartment building right next door to Edward Hospital where my oncologist is located. I'm very fortunate to be using Edward Hospital, since I've found it to be a wonderful hospital. Because of that, I've been volunteering there once a week for the past 6 months or so.
Over the past couple of weeks I've realized that I'm depressed, which is VERY unusual for me. I believe there are several reasons for my feeling this way. One being that Michele, my youngest daughter (she'll be 40 in June) has been living with me since January, and having her here has been wonderful for both of us. Her youth and exuburance has brought so much joy into my life. So far, the manager of my building has been very generous in that with my only having a studio apartment, only one person is supposed to live here, which means that Michele has to find another place to live, and she is in the process of doing that and has found a place that she will likely be moving into by the end of this week.
Besides that, Michele has someone that she is very serious about who lives in New York City, and
it looks like she will be moving there coem June or July -- and then, she will be gone. Of course, we will keep in close touch, but I will really miss her!
So I know that is one of the reasons that I am feeling depressed. But more things have started to occur to me -- like the building that I live in. Everyone here (there are 121 apartment in ths buildling) is in their late 60's and older. And quite often, one of them passes on. There are a few people here who I call "older young people," (like me) but on the whole, there are mostly "older OLD people," and I try my darndest not to be around them for too long! Hahahaha...
So, to put it into a nutshell, I believe that my depression is being caused by several things.
The upcoming departure of my daughter, where I live, and my cancer, which it seems now will eventually 'get me,' no matter what I do. One other thing is that I 'survive' on my social security every month, and after the rent, bills, groceries are over and done with, I'm usually left with about 1 $100 to get by on the remainder of the month. Oh, I think about how wonderful it would be to take a trip, or even just drive up and investigate Wisconsin on a weekend -- and I get so damn frustrated that there isn't enough money to do even that.
My, oh my, I am certainly unloading on you, aren't I? Hahaha...
One thing I'm going to do about this depression I'm going through right now is talk to Linda Conlin, the social worker in the cancer center at Edward Hospital. I called her and left a message this morning, saying that I really needed to talk with her, and could we possibly do it today. As soon as I finish this email to you I'm going to see if I got a call back from her yet.
Linda and I have become VERY good friends over the past months. I've told her that I feel she is close enough to me to be my daughter.
Well, that's about it for now. I'm so glad that I read your email! Ever since I got this damn cancer I've only met four women that have ovarian cancer, even though I've been in support groups since the very beginning.
This is just an idea, but what would you think about getting on something like 'messenger?' By that I mean, I'm on msn.com and I have 'messenger' where I can add people to my list of friends and when one of us is online it notifies me and we can talk with each other right away. Do you have anything like that? Gosh, if there are others that responded to your email on this website, maybe they would also like to do that??? Just an idea -- you can let me know, all right.
By the way, I have to ask you, from your name, 'flourgirl,' am I to assume (I hate that word assume!) that you are in the bakery business? The signature I use in my emails on msn.com are "Oblomete Soaring Spirit." Oblomete is my full first name, and I added the Soaring Spirit when I was almost done with my first round of chemo.
That's about it for now. I really hope that I hear from you!
My love to you, Oby
Naperville, IL

JDSurvivor
Posts: 2
Joined: Mar 2003

Hi. FIrst time with this forum. I am a Stage IIIc survivor. First diagnosed in Sept. 2000 at age 41. I went through 6 rounds of chemo (Taxol/ifosfamide). FIrst dose 1 week after surgery. Part of my colon and the appendix removed as well as total hysterectomy. Presently, have CA-125 done every 3 months and I would have it every day if possible! Worried most about recurrence. Now considering genetic testing so our three daughters will have the information when they are old enough to want it. Faith in God, wonderful family, great friends, a good doctor, and a positive attitude gets me through this. Each new day is a blessing. Let's be friends.

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