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How do you have happy talk about an unknown future?

appleyellowgreen's picture
appleyellowgreen
Posts: 38
Joined: Sep 2009

I am having a problem discussing things outside the Cancer Land arena with my husband. He has had 3 lung surgeries since 2005 and is now in chemo. He's doing well. He's 68, I'm 61. I am trying to talk to him about things that may seem trivial to him, but to me are some of the glue that holds me together. I need to think of the two of us having fun again. I want him to think of the future and the possibility of fun. I don't want him to be all gloom and doom - the drs. don't seem to be giving us the impression that there is extensive cause for immediate worry. We are taking treatments very seriously and are being diligent about at home care. I'm being realistic and I'm not in denial, but I do want to know if anyone has insight into why the "world out there" is off bounds for discussion.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

When my cancer first recurred, the prognosis looked so grim (statistically 15 months left). Everyone tip-toed around typical happy conversations about the future, like looking ahead to vacations, etc., afraid to think of good times I might not be around to share. I had to take the lead and open these conversations myself, simply ASSUMING I would be there, and let my family start thinking again about a future that I would be a part of. I wouldn't look ahead a DECADE in these conversations, but I could certainly talk about "this summer;" "when Emily turns 10 in December"; and "next Christmas" without everyone's face darkening with fear that I may not be there.

Cancer is so HUGE that it can easily occupy your mind 24/7. But you two are more than "this cancer", much more, and as riveting as cancer is, you allow it to take too much from you when NOTHING else can crowd it out of your mind.

Maybe you could open these 'happy talks', with "Once you finish this treatment protocol, I was thinking we could....." Or; "As soon you are back in remission, let's .....". Planning for the future, as long as it isn't the DISTANT future, is healthy and even realistic for most cancer patients. It gives you something to look forward to. You may get push-back on this; I know I did. My husband would say "Let's get through this before we start looking ahead"; "Or, how can you expect me to care about this now?". But I didn't let it go; I'd look up vacation destinations and send him website links, then bring it up again. I'd sit by him and show him things I wanted to do to the garden in seed catalogs, or ideas for presents for the grandkids in sales flyers. I bought a pet rabbit that distracted us both from cancer / cancer / cancer.

And, guess what! I DID recently go back into a tenuous remission and I'm glad we had kicked around vacation ideas during our 'happy-topic-talks', because that way we were quickly able to book a cruise to take advantage of this break from chemo, since we had already hashed out our concerns and wishes about a trip and could find something do-able. I bought Trip Insurance (I'm not THAT positive about this remission!); but we plan to leave in late May!

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

Maybe he doesn't want you to get your hopes up and let you down? If you made plans and his health ruined things, would he feel terrible? These things are possible...

My mother (la patient) is opposite from your husband. Her prognosis is poor, but she often goes on about trips she wants to take and things she wants to do. It's all talk, but I avoid engaging too much because then she will say I got MY hopes up and she ruined them by being sick.

I've been putting together a powerpoint of mother's life for her next birthday, and she has really enjoyed working on it. It's about her more than the family, and it's helping her to tell her story. Finding one old photo that needs to be scanned and added to the collection often makes her day. Remembering old fun is still fun.

I do avoid talking about my life and future plans, tho, especially travel. She gets this look on her face that has turmoil beneath it, so I don't go there unless it's necessary.

appleyellowgreen's picture
appleyellowgreen
Posts: 38
Joined: Sep 2009

Thank you for your input. I'm not talking about making actual plans. Just things like, "Wouldn't Paris in the Summer be a nice trip?" - or "Do you think we can plant tomatoes in the garden this summer?". Not big things, just bright thoughts.

I am glad that your mother is involved in her own Powerpoint show. That's terrific. Yes...the old stories are still good for everyone.

I'm not really talking about being disappointed - it's really more about censorship. It keeps MY spirits up. Something has to.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

This is curious to me. As a survivor myself, I find that I do not want to talk about cancer all of the time. In fact, I find that a lot of the people on this very site, especially the ones in the Chat room, come here to find people who know what it is like to have been diagnosed with cancer SPECIFICALLY IN ORDER TO FIND PEOPLE WHO WILL TALK ABOUT SOMETHING ELSE, ANYTHING ELSE.

Too often, it seems, when one is diagnosed with cancer, when one has been treated for cancer, others consider it mandatory to talk only about cancer when in the presence of the survivor, as if this now defines life for the survivor and, most importantly, defines the survivor.

In some cases this may be so. In a lot of cases, though, we want nothing more than to live through and beyond the cancer. I asked myself and I ask you: what is the purpose of living if it is only to feed the cancer, to give the cancer more than it was biologically disposed to have?

If I am going to deal with the effects of treatment, with the effects of the cancer itself, there had better be a very good reason for it, and simply being able to exist, to EXIST (Rocks EXIST!), for a longer period of time is not sufficient.

Let us hope, instead, for however long there is, there is consideration of the quality of life rather than quantity.

If your husband is averse to this, if he is the one censoring these conversations you want to have rather than you (and it COULD be you?), then I would suggest that he needs to re-assess why he is going through his treatments and what he plans to do with his regrets when he can no longer undo them.

Take care,

Joe

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Hi Apple,

When I saw that phrase you used, 'the world out there' it brought to mind a situation I found myself in after I had extensive treatments, to some extent it hasn't really gone away - just is easier to deal with over time.

After my first bout of treatments I went off to do some grocery shopping at the same big chain store I had gone to many many times for years and years before. I had a scarf on my head for going out as my hair still hadn't grown back in after my chemo treatments. When I walked in the door of the grocery store I stopped in my tracks, hands on my shopping cart, because I felt as if something had changed. Nothing had in fact, same old store and decor, but I felt like I was apart from the world I knew, sort of like i was in a clear bubble, and I was not able to actually touch anything in the store as I had done before treatments. I felt different. I knew, obviously I could touch things and pick them up (I wasn't totally bonkers) I just felt as if there was a thin membrane separating me from the world I used to know. I was different.

I am wondering if your husband is experiencing a little of that, although he might not describe things that way perhaps. Cancer changes people, and sometimes abruptly, and most just want their old lives back - meaning none of this pain and link to many doctors and many tests replacing all the fun stuff, even boring stuff, that we have come to know as our former life.

If that isn't it then I wonder what his life is truly like to him now? You said he was doing well but what is he really experiencing? After that many lung surgeries he no doubt has some health issues/symptoms that he is dealing with and maybe they are weighing him down, again maybe those symptoms just serve to keep him in 'cancerland' as you put it because they do. I have many side effects of the treatments that keep me down and servie to remind me daily of what I have been through - some days worse than others.

I am sure that as situations present themselves he may probably love to do something 'fun' but know that he has personally had to deal with all the surgeries and side effects and it isn't easy to just put it all behind you and think fun fun fun. Cancer puts you up close and personal with your own mortality - lots to think about there as well.

Maybe suggest some fun things to do that are doable for him but I know that if someone kept asking me about doing fun stuff and actually sitting down and discussing that I would probably snap back with something like 'don't you think I would if I could?' Now maybe that's just me as I have alot to deal with in side effects and I don't know if he does, or admits, but give him time and like I said maybe plan a surprise that is fun that you know is doable for him and see what happens. It doesn't have to be big - maybe just a picnic in the livingroom - start small - and see how it goes.

Every family member goes through the years after cancer treatment differently but for the survivor many take time to get back to their 'new normal' as many call it. Some seem to jump right back into their lives but others, not so much. Possibly you might consider talking with a counsellor who specializes in trauma and grief and they might have ideas for you as well, how to talk to him and how you can deal with your issues as well. Just a thought, they helped me.

Let me know if any of my yada yada helps.

Take care.

Bluerose

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