Who to tell, what to tell them - cancer is back

minxie · May 2016

Last week I was diagnosed with a tumor in my upper left lung. We don't know yet if it's mets or a new primary. I'm scheduled for surgery in the beginning of June to remove that lobe of the lung. I don't want my parents to know about this, for a variety of reasons. They'll be very worried and disappointed - I finally seemed to have my life back on track after cancer, the breakup of my marriage, a mental breakdown, and losing my job. I have a great new man in my life, a job I love, things were going so well...

The other reason is that my mother is a very difficult person. Nagging, guilt tripping, judgemental, passive aggressive. I have never been able to count on emotional support from her. Everything is through the lens of how she views the world and she is incapable of seeing another's point of view. Telling her would just bring me more stress, and no comfort. But my sister thinks I should tell my parents. She said, if it were my child, wouldn't I want to know? Well of course I would. I am being selfish by keeping this to myself and I'll fully own that. Thoughts?

The other issue is how to tell my boyfriend about this. We've been together 8 months. We're very fond of each other but I keep waiting for him to say he loves me, he hasnt yet. This diagnosis is going to change our relationship. Will he want to stay involved with someone who has a serious illness? He's a wonderful guy and I don't want him to feel like he's tied to me, because my future is very uncertain at this point. How do I express what's going on to him?

susan_02143 · May 2016

Minxie,

When I progressed with soft tissues mets, I didn't tell my mother, my sisters, my friends; just my husband and daughter. My reasons for withholding from my mother are different than yours, until we get to "I knew she wouldn't support me the way I needed to be supported." There is nothing at all that says we must tell anyone at all. I believe it was about 2 yrs post diagnosis that I finally told my immediate family. Cousins, aunts, uncles, etc still are not aware.

I was chastised on the Stage IV board [which is why I don't mention it anymore over there] and told that I was lying, hiding, ashamed, etc. I am none of those things. I am, to this day, grateful that I chose not to share this information widely. It is 6 years later and I am still here. I still work. I still have a life. There has been no reason for my extended network to know just yet.

As to the boyfriend, I have no advice. It won't be easy. You are right that this will change something; and you won't know how until you have had the conversation. Of course, I hope this goes well for you, but there are no guarantees. I have seen men walk [and not just boyfriends] and I have seen men step up to the plate in wonderful ways. The worst is when men stay but make the patient's life a living hell. I have seen that too.

Good luck as you wade back into the medical vortex.

*susan*

New-girl · May 2016

I have not told most of my extended family ( sibs and parents), inlaws or most friends. When my recurrence was discovered, I needed alone time to figure it out since I felt I was getting a " do over" from the first time. And like most do overs, you hopefully figure out what you don't want or need.

I don't need my mother's lack of concern for my health. I will not tolerate her opinions of my reconstruction goals. I will not deal with my some of my friends lack of sensitivity. I have enough on my plate and I just have decided this time to keep a closer circle.

I have had major surgery and nobody found out and now I am starting radiation and I hope to continue keeping this under the radar. It really has been quite liberating not explaining or comforting people. Sometimes it is exhausting just explaining the cancer routine and why I have chosen the route I choose to take.

Wishing you the best of luck!

LisaAlissa · May 2016

Minxie, I'm so sorry to hear your news. I'm not (yet?) faced with mets, but have had difficult news to share with family. So I thought I'd share a couple of thoughts with you, in the hope that they might help...

1. You need to have a plan about what & when you will disclose to whom. And to recognize that someone you've already disclosed to may (at some point) share your disclosures with others...including, potentially, your parents. Your sister may feel that she "needs" to disclose to your parents at some point. And the more people who have your news, and the more people they share it with, the more likely it is that someone will simply assume that your parents know and extend a sympathetic hand to your parents.

Whether the disclosure is deliberate or accidental, once it gets to your parents, you won't be able to put this "back in the bag." So you'll want to have a plan for how you will handle the "why didn't you tell us" discussion. As well as the "how-we'll-share-info-going-forward" discussion.

2. Find a dispassionate third-party (a "DTP") to discuss all of this with. You need to sort out how you will manage whatever disclosures get made. This might be a counselor, a pastor, a nurse navigator, Stephen minister, therapist, or just a good friend. I'd suggest that the DTP not be someone who is a friend of your parents. Maybe the discussions on this thread can fill part of the DTP role? But I'd hope you could find someone for an in person discussion. You'll want someone you consult with from time to time as your health, your decisions about disclosures and your needs change.

3. Start building your own support network. If your parents can't be part of it, perhaps friends, a support group, church group, neighbors, etc.? Check with your DTP, or even a social worker where you're being treated. You want to have alternatives sorted out that you can reach for if you need to.

4. Consider if you, your sister or someone else would like to create a private journal/blog for you on "Caring Bridge." That would give you a way to bring your parents up to date when (if) you need to do that.

HTH,

LisaAlissa

susan_02143 · May 2016

I am going to counter LisaAlissa just a bit and say, you might not actually need a support network just yet. I haven't in the 6 years since I have progressed. I haven't needed to talk with anyone about any of this. For 5 years, I received 2 shots a month, and now I take 6 pills a day. I haven't lost my hair. I haven't lost my mobility. The days that I don't feel great, I just don't put myself out there. My sisters know that they do not have permission to tell anyone at all. This is my story. I will decide when it should be shared.

LisaAlissa's advice will work well, if you are actually getting sick. Many of us with mets, are not really sick. I mean, we have a cancer trying to overtake our bodies, but we aren't sick and could not be identified in a crowd.

*susan*

minxie · May 2016

Thanks you Susan and Newgirl for validating my feelings about this. It's my disease and I have the final say in who gets told.

herb · May 2016

tell you mom , if she starts draining you tell her your not felling well and have to go.

you boyfriend.. even in a 20 yr relationship I found out that peoples true colors come out. If he runs away and can't handle it he is not the right one anyway. He can't cope with hard times and as you get older issues arrise were you need someones support. Not someone who will run away at the 1st sign of trouble.

exbrnxgrl · May 2016

Who/when to tell, or not tell, is up to you according to your individual circumstances. Clearly if telling someone causes stress, then don't tell. If you are torn or the decision seems unclear, just give it some time. The right thing to do will usually come to you. Good luck

wintersocks · May 2016

What we share/don't share is entirely up to us, Telling my family made the nightmare of cancer worse and I regret the telling. it became about them and what they could/could'nt handle. I cut them out of my life for my own sanity as their lack of support was astounding. I do not regret it and keep my circle now, very small. It's improved my mental health and I did not tell them when I became ill with sepsis either.

sandcastle · May 2016

I, kept my circle very SMALL!! I, did not want anyone to feel Sorry for ME......And because I did not tell the world, I had a Cancer Free Zone, Which has helped a great Deal.....My Best Liz

exbrnxgrl · May 2016

My experience has been the opposite. Unconditional support from family and friends. Over the course of 5 years, I gradually opened up to my colleagues at work. No one felt sorry for me or treats me differently. Many have asked intelligent, inciteful questions. Have some said things which were not 100 % to my liking? Yes, but this is new ground for many and I expected the occasional misstep. It was also my opportunity to help people understand MBC. There are also no rumors or gossip because I have made it clear that people can come directly to me, if they want to know how I'm doing. Since I participate in both my work and personal fully and don't look "sick", it has largely become a non-issue at this point. I am just me, not Caryn with cancer.
I think the salient point was that I knew my audience. I knew that being open would not cause me stress. I would have been less open if I knew the opposite would occur..

3-16-2011 · August 2016

Hi Minxie

We all have such different circumstances. For me, I try to listen to my intuition and remember to choose kindness for myself and others. I fall into bitterness way too often, but I am working on it. Tell the people you need by your side.

Good luck and peace

Mary

dragonsnake · August 2016

It was difficult to me to come to terms with my condition; still is, and I avoid this word. What helped me to adjust a bit is to say it out loud while shopping for surgical bras. Talking to sales people is easier than to your close circle. Count me silly, but I practiced on them: some were supportive, some indifferent. It all helped, because I realized that they do not care deeply, and forget immediately. However, this experience have prepared me to some degree to break the news to people that needed to know (my boss, my mom). I didn't swear them to secrecy, though, because I could not control their behavior. I regret telling it first to my dad who was selfish in his response (as usual); he was angry with me and asked not to bother him with my problems. It's all good, though, because now I do not have to talk to him - he gave me enough reason to cut him off. My mom was different: she made it about her, as she usually does. At some point, she agreed that it would have been better for her not to know , although some part of her needs to be intrusive and controlling.

Tell what and when it feels right, and when you strong enough to handle it. I figured out that people react to such news approximately the same way they react to other non-live-threatening events: some empasthize, some offer help, some do not want to be bothered, and some make it about themselves. It's a major crisis for you, while, sadly, others do not feel it the same way.

Who to tell, what to tell them - cancer is back

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