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Having a hard couple days

Glad to be done's picture
Glad to be done
Posts: 558
Joined: Jul 2012

I know that with all everyone is currently going through I have absolutely no right to whine. I have just had a couple of hopeless days and want to not act like everything is fine for one moment.

Don't get me wrong... I am soo happy I am NED for a month now. What I don't know is how do I move on with that status. I know I could be fine forever. I know I could have a recurrence. What really scares me is that it seems everyone on here who was diagnosed as 3C has had a recurrence. That is what I am scared of. How do you move forward with your clean status knowing that at anytime you could be sick again...... This is a struggle for me.

I keep telling myself that I know a girl who was 4B from my docs office and that was 14 years ago and she is fine and has never had a recurrence

I feel like even the doctor thinks it is going to come back because she told me to keep my power port in. We agreed I would keep it in till next Spring. She did however remove my I P port because she said we don't need it anymore.

I flip flop. There are days I feel that I kicked this and I am gonna be fine and there are days when I get the least little ache I think Oh god it is back. I think I have just been off my rocher a bit because my back is bothering me. My sacrililiac (sp?) is bothering me a bit since I over did cleaning last thursday. Wedsday and Thursday I took a short nap in the afternoon and that even made me panic the cancer is back because I havent done that since chemo ended. Maybe I need som

I know that it takes a good year to recover from the hysterectomy and chemo but how do you get past that point when your leg hurts or something that it is normal from the surgery and chemo and not cancer again.

Any help or advice from veterans would be greatly appreciated.

I have a follow up friday for my port removal surgery. Meybe I should ask my doc about getting something to help me. She already has me on ativan but that is only two at night to sleep...

Thanks for letting me ramble.

Eileen

Seraph98
Posts: 5
Joined: Aug 2012

I'm only about to start round 5 of chemo. My ONC has been saying since day one that they will leave the power port in and take out the abdominal one. I think it's pretty common.

Lisa 00
Posts: 109
Joined: Jul 2009

My only advice is that you just have to get your mind off of it. Keep your mind occupied with activities or interests or reading. And for the times that you can't do that, I encourage you to seek some sort of pharmaceutical tranquilizer. I think any doc would happily prescribe some valium, etc.

poopergirl14052's picture
poopergirl14052
Posts: 1159
Joined: Nov 2010

It is normal to be afraid. I know many ladies who keep in the ports for a few years with no problems. Relax and enjoy being NED. You will see yor Dr. Every 3 months and she is keeping a close eye on you...embrace your remission as many ladies don't get one. Every little aches and pain isn't always about the cancer honey...be well,stay well...Val

Mwee's picture
Mwee
Posts: 1316
Joined: Nov 2009

I know this is a scary time for you. You mentioned that you know lots of the women here who were diagnosed 3C have had recurrances. There are also many 3Cers (new word, I guess) who are NED and move on from posting on the site. It's difficult for any of us to experience aches, pains, digestive problems etc. without the first thought being Oh,no! I would talk this out with your doctor. Believe me you're not alone with these feelings. Anti-depressants and or anti-anxiety meds can help take the edge off and lessen stress.
((((HUGS)))) Maria

2timothy1 7's picture
2timothy1 7
Posts: 336
Joined: Jan 2012

Eileen
I know what you mean. It is the uncertainty of this disease that drives me crazy. Started back to work last week. That was wonderful for me. Completely took my mind off me. I needed that . Once you start back to school that will help a lot!

Tethys41's picture
Tethys41
Posts: 1057
Joined: Sep 2010

Eileen,
I've been NED for 2 1/2 years after a diagnosis of stage IIIc and a suboptimal debulking. Don't get me wrong, I work hard to stay this way with diet and lifestyle, but my CA-125 last week was 1. I went through a similar period after completing chemo. Then I realized whether I'm NED for 6 months or 20 years, I don't want to waste what are probably the best years I have left worrying about getting sick again. That would be the worst way to spend my healthy days. If it comes back, it comes back. In the meantime, I'm doing what I can to keep my body as healthy as possible, which gives me some sense of control, and I am enjoying the moment. Hope you find some peace.

kikz's picture
kikz
Posts: 1270
Joined: Jun 2010

has to find the way we will deal with this journey. From the beginning my gyn/onc was very frank with me about the recurrence rate but also gave me hope telling me about patients he has seen for years.

When I got my diagnosis in March of 2010, I thought I wouldn't make it through summer. This was based on what little I knew about ovarian cancer at that time. I was so happy after I saw my gyn/onc and he told me there was hope. I think that was the beginning of my coming to terms with this disease. I am happy to be here now, this day. It is a simple thought but it is how I handle it. I do look ahead at times, I have even pictured my funeral. It is hard not to go to those dark places sometimes. I have a good cry every few months and move on. Like Tethys41, I don't want to waste valuable time on things that may or may not happen.

After treatment I was in remission for 18 months. During that "magical" time I did worry about recurrence but I also still had the hope that I would beat this. Now that I have had the recurrence I know that possibility is gone. I broke down when my CA 125 first rose spent a couple of days mourning the loss of my remission. I cried to my cousin, "I don't want it to come back." I didn't know for sure because my onc wanted another CA 125 in two months and told me that if it didn't go down I would have a pet scan. But I knew.

Now I am dealing with the new reality. I had an easier time when the second CA 125 doubled and when the pet scan showed a tumor I took it in stride. I sometimes wonder where this comes from. I have always been a worrywart. Thankfully that has changed and the change happened way at the beginning. I remember telling my gyn/onc shortly after surgery that cancer had given me clarity. He wasn't surprised.

I'm sorry I didn't mean to go on because the advice is simple. Live in the moment. It is simple advice but I know it is not that easy to follow. It is really the only choice we have.

I wish you the best and maybe you just need more time for things to settle in. I am glad you shared your feelings. I depend on these ladies so much. Just to know they are here gives me strength.

Hang in there,
Karen

Felicia_205's picture
Felicia_205
Posts: 79
Joined: Jun 2012

The best thing to do is live as healthy and happy of a lifestyle that you can. I had 6 months between my most recent diagnosis and the start of my chemo and my biggest regret is not using that time to enjoy single everyday. On the other hand you also have to deal with your fears and face them, I would ignore them until I broke down and had panic attacks. If you are having alot of anxiety about it you could talk to your doctor and ask for some anti anxiety meds. I know thats not ideal but since my doctor put me on clonezepam I havent had a single panic attack. Its not easy what we have to go through even when your not in treatment, Its like you will never fully be that person you were before your diagnosis.

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

I do not have ovarian cancer but thought I would respond to your post given that I am going through the same thing right now, currently NED since March from a very aggressive type of uterine cancer with high reoccurence percentages.

I took to heart some advice from another individual on this board who said she was sorry she wasted five NED months, worrying about a reoccurence. I vowed to do everything in my power not to let thoughts of cancer consume my every waking moment which meant having an action packed summer doing all of the things that I had always enjoyed but had given up in the years preceding my diagnosis and could not have done if I wanted to during my treatment.

I camped (heading out again this weekend), went on a trip to Montana (Yellowstone, Glacier and some scary ghost towns) by myself in June. Took up kayaking, have a tripped planned to Fort Collins in October, going to Vegas in November. I plan on buying cross country skis and enjoying the winter months outdoors as much as possible; basically doing everything I want to do but might not be able to if the cancer comes back.

The aches and pains, I've accepted as part of the residual effects of chemo and radiation and nothing more. I have had abdominal pains on and off since I ended chemo, almost replicating the pain I felt in my hips a few days after receiving each Taxol treatment. But over the last month, the pain has disappeared completely. I had a three month check up and all was good, my six month will include a port removal.

My hair is just long enough for a trim and to hell with the risk, I had my hair stylist color it a vibrant red with bizarre burgundy highlights....I'm too young for a head full of gray hair.

I know how I deal with it might not work for everyone, but I am determined to enjoy every single healthy day of the rest of my life. I don't want any regrets and in a way, the cancer (if it doesn't come back) was a blessing as it helped me appreciate my life that much more.

The one piece of advice I can give you - make plans for the future...trips, hew hobbies, old long forgotten pasttimes, get a puppy (okay I might be projecting a little on that one :o)) whatever it is that rocks your boat, but always think beyond your next medical milestone, it just helps to make things feel normal again.

Take care,
Cindy

kimberly sue 63's picture
kimberly sue 63
Posts: 396
Joined: Apr 2012

I like your advice! Kim

Radioactive34's picture
Radioactive34
Posts: 387
Joined: May 2011

I have learned you just do it. Though the beast haunts every so often you just got to live. There are days when I am plain scared or just tired. But they can't take up my life. I find that the morning comes whether I am scared or not.

I can't keep thinking I am just going with the flow for the next 6 months, because even those months come to an end, so I have to manage my life. I have to go back and think about working. I have to think about my relationships.

I have to reconsider life with the new norms cancer left me. I can't go on a 3 hour hike without consequences. I have to rethink life, but it is a good life. Life is not anymore uncertain than it was before. The uncertainity is just much more highlighted.

“It's a dangerous business, Frodo, going out your door. You step onto the road, and if you don't keep your feet, there's no knowing where you might be swept off to.”

― J.R.R. Tolkien, The Lord of the Rings

I love that qoute...it is so true.

AnneBehymer's picture
AnneBehymer
Posts: 739
Joined: Jul 2011

First of all you can whine all you want no matter where you are in you fight we all have the right to whine this is a scary battle. I just answer someone else post and I said you have to fight with hope not fear well I think we also have to live with hope not fear and I know it is hard but if you live in fear you are not really living. I am stage four was in remission for around four months and then it came back the fight is not different this time from last time I will fight with hope. Talking is the best way to get your fears out and sometimes just talking helps you release some of those fears and get back to living. Please come her as much as you want and whine all you want we are here for you.

Hugs, Love, and Prayers
Anne

kimberly sue 63's picture
kimberly sue 63
Posts: 396
Joined: Apr 2012

Eileen, I understand what you are feeling. I'm not even done with chemo and still have that fear of re-occurrence and also the fear of having to deal with treatment continuously for my life time. It is the unknown that is so scary. The unknown is what got me into this ovarian "club" in the first place. I was completely surprised that I got ovarian cancer. No history in my family and I was low risk. So now when thinking about completing treatment the fear of the unknown appears again. So I am sure your feelings and fears are normal. Sorry I don't have any helping advice...just an understanding of how you feel is all I can offer. Kim

lovesanimals's picture
lovesanimals
Posts: 1253
Joined: Sep 2011

What you're feeling is so normal and so understandable. The ladies here are very wise and have given you good advice and information. I don't have much to add other than you learn to try to focus on the positive and to try to enjoy each good day that you have. With regard to your port: while it feels to you like your doctor thinks the cancer will come back, doctors really don't know that and it might very well be that it never comes back.

Fear and anxiety can strike at any time on this journey. You are not alone. As you've learned, this board is full of caring and compassionate women (including yourself!).

Wishing you peace and blessings,

Kelly

Glad to be done's picture
Glad to be done
Posts: 558
Joined: Jul 2012

Thanks ladies you are the greatest. I am feeling much better. I am even making long range plans.

Not so far off - next saturday I am participating in a dirty girl mud run. A 5k run/walk obstacle course IN THE MUD... It benefits breast cancer and all cancer sur.vivors do it for free. Others pay $75. Check it out - www.godirtygirl.com

My brother is coming from Chicago for Christmas for the first time in 12 years,

Memorial Day weekend 2013 I am taking off to West Palm Beach, FL for the long weekend with my 4 closest girlfriends for a girls weekend away. I have not done a girls wkend since I was married. I am so excited for that.....

I am p at our camp with my boys and 1 of their friends for the long holiday weekend. Hbby will join us tomorrow after work....

I go back to work Wednesday the 5th.... I am SUPER EXCITED about that...

Thank you all for your support. You are the best... Now I am off to make a cup of green tea instead of that second cup of coffee.... Just one of the changes I have made. The girls at work won't believe it when I go back. I was a big coffee drinker....

Felicia_205's picture
Felicia_205
Posts: 79
Joined: Jun 2012

I hear the dirty girl mud run is awesome! I signed up this year but I dont know if I will be able to participate. Down here in Dallas the run is in mid october so I dont know if Ill be in the hospital or not. Have a great time, you deserve it!

Felicia_205's picture
Felicia_205
Posts: 79
Joined: Jun 2012

I hear the dirty girl mud run is awesome! I signed up this year but I dont know if I will be able to participate. Down here in Dallas the run is in mid october so I dont know if Ill be in the hospital or not. Have a great time, you deserve it!

2timothy1 7's picture
2timothy1 7
Posts: 336
Joined: Jan 2012

Glad you have made so many plans! The mud run sounds fun. Your brother coming in after 12 yrs is exciting too. Enjoy your girlfriends,also. I am making plans to go to the beach next month with a few girlfriends. I am so looking forward to it.

JoWin615's picture
JoWin615
Posts: 142
Joined: Feb 2011

But isn't this board great? I learn so much and get so much emotional support just by reading all these responses. Rambling is encouraged!

The following words, favorites of mine, are sometimes attributed to Nkosi Johnson, a little South African boy who was born with AIDS, and died at age 12:

Do what you can
With what you have
In the time you've got
In the place you are.

Best to you, Jo

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