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Letting people know cancer is back

kikz's picture
kikz
Posts: 1266
Joined: Jun 2010

How have you ladies dealt with telling people when cancer recurs? I only let a few people know when my CA 125 rose in April. They have been there for me the last three months. Now that I know my remission is over, I find I am not sure how to let the rest of my family and friends know. When I was first diagnosed in 2010 I was so sick that all my family and friends were told. I remember that first day there were so many people at my house. Over the next few days I had visitors coming and going.

My mom wants to tell people but I had her wait until I saw the doctor which was last Thursday. It isn't that I want to keep it a secret, I don't, but I hate being the voice of doom and gloom. I have even hesitated calling one of my longtime friends because I hate the thought of upsetting her.

I tried to prepare people from the beginning about the high rate of recurrence but I think it will still be hard for them to hear that it's back. I know I don't have to tell "everybody" but there are a lot of people who I feel should know. For the other people in my life I think it will be a case by case situation where if I see them and they ask how I am, I will tell them.

Any suggestions? I don't think my mom fully understands how I feel. Why should she, I don't really understand it myself. I don't think she has told anyone because she thinks I don't want her to. I just don't want to be the cancer girl. Guess what, it's back, guess what I'm back in remission, guess what it's back again. I don't want people to feel sorry for me. I also don't want them to feel sad when they think of me.

Karen

debrajo's picture
debrajo
Posts: 724
Joined: Sep 2011

I do have a chip on my shoulder, but if some one calls you and sencerely ask how you are then tell them it is back then give them only the details you want known. As for the rest, if they don't call to see how you are, they don't deserve to know what is going on in your life. Just my opinion. I use to think I several really close friends...now I know I don't. So they are like strangers to me and they don't need to know how I am. Just saying...Best, debrajo

garden gal
Posts: 212
Joined: Nov 2010

I was only lucky enough to go into remission once, but with all the chemo drugs I've been on each time a ca125 was done when the numbers came down great, tell everyone, then the numbers went up. That has happened numerous times now, and don't I hate it when I have tell family and friends the bad news. I think the only thing I tried to do was sound positive when I talked to them. things like I still have options and I'm not giving up. Still you feel bad telling them, how this effects their life. One thing I found was they really wanted to know good or bad, this is what my daughter said to me when she thought I was keeping things from her. I think when your ready to tell them you'll be ok with it. Thinking of you and try not to let this get you down, easier said then done. Prays and hugs Kathy
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Kaleena's picture
Kaleena
Posts: 997
Joined: Nov 2009

Karen:

There is no right or wrong answer to your question. But like Debrajo, the friends I used to have are not close to me anymore. I really don't know if I would tell some of my family members either, other than my mom and my sons. YOu are right on one thing that some people like to make it a doom and gloom, or they act like you never had it in the first place.

Like the other posters said, if they call and ask, then you may want to tell them. But it is really your decision and how it makes you feel. If you feel better telling a friend or two, then do it. You may see, though, when some people ask how you are, if you tell them you have a recurrence, then they may not want to hear more. Some people like to ask, but don't want to hear anything but "ok".

With regard to your mom, it may be just her way with dealing with the fact that you have a recurrence.

Karen, I am sending you my thoughts and prayers.

Kathy

JoanC's picture
JoanC
Posts: 224
Joined: Jan 2009

I agree with debrajo...people that really care will inquire.....I also found that people I thought were "friends" ..were not really. You don't "report" when you go to dentist or any other personal things....this is no different.
Sending hugs and good thoughts your way.
Joan

Green Leaf's picture
Green Leaf
Posts: 24
Joined: Jun 2012

I agree to use the "Need to know" basis to let friends and even family members to know our illness.

When I was first diagnosed of OVCA, I was thinking of how to tell my closest female friend. So, when she asked me out for lunch (which was our usual activity), I sent her an email saying I was "very sick". She replied "We can go next time when you get better". She never asked me again. That was about 12 months ago. So, to me,she does not need to know about my disease.

My father is 80+ and I will never let him know about my illness.
He does not need to know any of my troubles.

Life is difficult enough.
Cutting down some unnecessary explanations makes life easier.

All the best.

pattysoo's picture
pattysoo
Posts: 173
Joined: Oct 2010

I've been thinking about this topic lately since I'm pretty sure that my remission is over. I'll know more with further CA125's in a month or two, but I probably won't have treatment until there's visible cancer or symptoms. So, I thought that I'd tell those who care that I'm starting treatment again when the treatment commences. A couple of very close friends want to know everything and already know about the rise in numbers, but my adult children will worry, so I thought I'd let them be free of that worry a little longer. I'm working on teaching myself not to worry in advance either. So far, I have minimal success with that!

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

I have thought about this a lot. I personally think if someone is interested in me they will sincerely ask how I am doing. My bff is super busy but drops me a line every so often and specifically asks about it specifically. I interact more with some family members more than others so they ask.

Otherwise, those who love me will learn through the grapevine. They will call when they have time or can deal with things. Though that is me....we are all different.

kayandok
Posts: 1223
Joined: Jun 2008

what about sending an update group e-mail to friends and family. But there is not rush, acutually. When you know that you can answer the phone and talk about it with someone who will call, withoug sobbing, then you know you will be ready to do that. (It is very tricky, because as a cancer survivor, we need the support and care but what often happens with me and I know I am not alone, is that we end up caring for them in their sadness and grief that we are not "cured" of cancer.) Meanwhile, I would tell a very close trusted friend or two that you know will support you, so you can process a bit too, before the "world" knows. That way you can be more confident of being able to talk about it when people ask.

The "C" word alone scares some people to death, and I have come to realize that they are not the ones that I will receive any support or care from, and it is not because they don't love me. They just can't handle it, and are too afraid of their own immortality or whatever it is. In their defense, they do love me and want to be positive but just don't know WHAT to say. Anyway, I have decided to forgive those who can't support me (even though some of them are/were very close to me before dx) and to be deeply grateful for those who can. This is a heavy heavy issue, because we are dealing with survival and life itsef.

I can tell that you are still processing your reality and sharing it seems scary to you. And you are worried about the response you will get too. You are very compassionate and I know in time you will figure out the timing and how to share in an honest but sensitive way. I think this is an issue we all deal with but each of us have unique family/friends, and being sensitive to that is improtant for the rest of the survival journy we are on. Praying for you today, Karen.

Hugs,
kathleen

PS I just wrote a really long response, but it has vanished. So, if it appears, you will get two versions of the this post. Maybe this one is better, because it is condensed. I feel like I could actually write a book on this subject, so lucky for everyone, that I didn't, especially given the fact that I can't find my prescription glasses and am using my drug store ones, so I know there are plenty of typos:)

kikz's picture
kikz
Posts: 1266
Joined: Jun 2010

for your your advice and suggestions. I am still trying to figure this out but I think it will happen naturally. My neighbor came to my door with zucchini and asked how I was. "I told her" and I am not at all close to this women(although she is a good neighbor). Then I saw the sister of the friend I am hesitating to call and when she asked me how I was "I told her too," I asked her not to tell her sister so I can call her. It's weird, I am spending so much time deciding how to handle this and I blurted it out to two people that I really had no reason to tell.

I am not emotional about it for the most part. I have only cried a couple of times and that is in the dark of night when I wake up and start thinking too much. I feel lonely at that time but after a few tears I am okay.

This is just another step on the journey. I am doing fine, feeling great, attempting to go about business as usual. Some of you have suggested I just deal with it if I am asked and I guess that is how it has been working out.

When I do tell someone I want to treat the situtation matter of factly then hopefully go on to another subject. I normally don't talk about my illness that much even with the people who know exactly what is going on. There are much more interesting things to talk about.

Karen

kikz's picture
kikz
Posts: 1266
Joined: Jun 2010

for your your advice and suggestions. I am still trying to figure this out but I think it will happen naturally. My neighbor came to my door with zucchini and asked how I was. "I told her" and I am not at all close to this women(although she is a good neighbor). Then I saw the sister of the friend I am hesitating to call and when she asked me how I was "I told her too," I asked her not to tell her sister so I can call her. It's weird, I am spending so much time deciding how to handle this and I blurted it out to two people that I really had no reason to tell.

I am not emotional about it for the most part. I have only cried a couple of times and that is in the dark of night when I wake up and start thinking too much. I feel lonely at that time but after a few tears I am okay.

This is just another step on the journey. I am doing fine, feeling great, attempting to go about business as usual. Some of you have suggested I just deal with it if I am asked and I guess that is how it has been working out.

When I do tell someone I want to treat the situtation matter of factly then hopefully go on to another subject. I normally don't talk about my illness that much even with the people who know exactly what is going on. There are much more interesting things to talk about.

Karen

kimberly sue 63's picture
kimberly sue 63
Posts: 389
Joined: Apr 2012

The power is yours. You get to decide who, what, and when you want to share that news. Don't stress over it. You have the power and control over that. So many things in this OVCA journey has left us powerless. Kim

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