Need help in how to talk to partner about my cancer

I am sorry to hear the communication between the two of you is strained. Denial is a defense mechanism that is hard to dismantle. Perhaps an article like the one here
https://healtreatmentcenters.com/mental-health/denial-coping-what-is/ might help since it is online and not coming directly from you. I applaud you for your courage and positive attitude about your situation. Wishing you as many happy days as possible.

Sounds like your partner is in denial. Knowing a loved one is going to die, is a hard thing to handle. Sounds like she thinks if she does not acknowlege this, it will go away. My husband has stage iv lung cancer and I have accepted it. We don't know how long he has but we do know that it is terminal. He only weighs 94 pounds and it hurts me to look at him being so thin, but I keep on a brave face. We have made a will for him, and it is so sad to think he may be gone someday soon. I don't like thinking about the future either, but I have accepted. I just don't plan things for us together in the future. But really, no one knows what our future holds for any of us. I like to remember one verse of the bible that says, "Man plans. God laughs." He is the only one that knows our future. But I understand it has to be so hard for you to just want to talk and she does not want to. A relationship is based on communication, love, and trust. You should be able to share your worries with your loved one, but it is evidently too hard for her to talk about right now. You are going through one of the hardest battles of your life and it is not easy to be going through this time alone. God bless you and I hope your partner will take her head out of the sand and be there to help you through it.

Yes, cancer does suck. This is a very difficult time, compounded by troubling communication issues that are likely due more to your partner's defenses than your own needs at this time.

I'm wondering if you're familiar with end-of-life doulas? I have experience in this field and part of the training is not only provide companionship in various forms to the individual who is facing end of life. While serving in a non-medical role, they can educate the family on the dying process on an appropriate level and provide understanding of the death and dying process.

You can locate end-of-life doulas in your area through online searches as NEDA (National End of Life Doula Alliance) or INELDA (Int'l End of Life Doula Association). Your oncologist may be able to provide some direction also, although this is an emerging field with which some providers are not totally familiar, however, can be very beneficial.

It may also help to have these books for both of you: the relatively new and excellent Nothing to Fear, Demystifying Death to Live More Fully by Julie McFadden (@Hospice Nurse Julie) and Saying Goodbye, A Guide to Coping with a Loved One's Terminal Illness by Barbara Okun and Joseph Nowinski PhDs.

I hope these suggestions help to ease your journey.

You're carrying a lot of emotional weight already, and you may or may not want to take this on, but when I was first diagnosed with stage 4 prostate cancer in 2021 (and my prognosis was worse than it is now), I asked the people close to me to share openly how it was affecting them.

Sometimes the answer was just "I try not to think about it," but sometimes it really opened up communication ("I'm sad that you might not get to see me graduate and have kids").

My mom's brain tumor (glioblastoma) and biopsy surgery left her barely able to speak. We never got to have any of those deep, heart-to-heart end-of-life conversations I always imagined we'd have like in the movies.

I resolved to not make that mistake with my dad. After he was diagnosed with cancer (malignant pleural mesothelioma), I tried on many occasions to open that communication door, but he was never the "touchy-feely-emotional" kind of communicator like that. Even by the time he entered Hospice care, he still seemed somewhat in denial about his condition (or silent denial about it), and would rather just limit things to small talk (sports, projects around the house, what my kids were up to, etc...)

Shortly before the death of both (13 years apart), I have memories of just talking one-way to an unconscious person and praying somehow they were able to hear me. It was frankly not very satisfying. 🙁

Now that I'm a pancreatic cancer patient (3 years since Stage-II diagnosis, 2 years since the post-Whipple Stage-IV recurrence), it's been a weird world... Sometimes my scans, tumor markers, and day-to-day feeling have me thinking I've got a lot of time left. But things like one tumor growing into the wrong spot (my gastric outlet) leave me demoralized and depressed with little hope, and a sense of urgency to make sure nothing important goes unsaid.

My kids (3 young adults, all out of the house) are aware of this and have taken it to heart. It has really opened up the channel with two of them. The third is still having a hard time with it, but all of them are making an effort to spend more quality time with me, and it has really reduced the tension and "walking on eggshells" feelings.

My wife has been in the day-to-day with this the whole way as my primary caregiver. She has gone through phases I would call "avoidance" more than "denial" just to cope with it -- it has been very hard on her. She has accepted that, as an engineer, I just talk "data" in fact-based conversations about my life outlook, medical status, and final wishes. She acknowledges that I'm the one experiencing the disease, and that keeping the open, honest communication (nothing important goes unsaid) as a priority helps us both. That has been key for us. It doesn't make things *easy* but it does make them *easier*.

I think you see this more clearly than your partner does at present. Maybe she could participate in a local support group, or something like the Caregivers support forum here: https://connect.mayoclinic.org/group/caregivers/

I wish you much peace, comfort, and many happy moments in the upcoming months.

It can be so so very difficult when both partners in a relationship warrant emotional support at the same time. That shared pot of emotional resource between the two of you can get pretty close to empty.

I agree with the others about denial. I just wanted to add to the conclusion of denial as a part of a complex grieving process. We grieve the loss of illness, relationships, hopes and dreams in order to come to an acceptance of life as it is now. It can get pretty rough when both partners are at different stages of acceptance and you consider individual personalities and ways of coping added into the mix.

From your well explained description of the situation it seems your wife is anticipatorily grieving your loss. Anticipatory grief can include a range of emotions primarily involving feelings of disbelief/denial, anxiety, anger, fear, sadness, guilt. Within this process your wife is defending against the anxiety of knowing what’s coming. As she anticipates facing a sad, fearful situation, anxiety, anger and guilt surface to an uncomfortable state of being. Denial as a coping mechanism serves to defend against painful feelings of anxiety.

It sounds like you are ahead of your wife in the continuum of coming to an acceptance of the situation as it is. This can cause a disconnect. I can certainly understand your feelings of isolation in not getting the validation and support you need. You’re right it “sucks” and I would feel quite let down and annoyed if I were in your situation. Unfortunately your wife through NO fault of her own is not on the same wave length of acceptance. This has nothing to do with love. It sounds like she loves you dearly. She is just deeply stuck in her own painful grief. She is expressing her need for support by saying “it’s always about you” and the protective escape “I don’t want to talk about this right now”.

You don’t mention a therapist so I am assuming there is not one actively helping you guys. I wish there was a therapist or counselor working with both of you as a couple to help you navigate this difficult journey together. A clinical social worker, psychologist, trained clergy person, mental heath counselor with experience in grief and marital issues would be most beneficial.

In the meantime since the communication on this forum is only with you, the burden of intervention would have to come from you. May I suggest if you can manage it (very difficult) put your self emotionally aside (ignore her planning, denial, anger and everything adverse) and pretend you are not only your wife’s husband but her therapist too for a moment. Give her a hug out of the blue and when the focus of interaction is off your illness ask her “honey, how are you feeling today my dear? (love, sweetheart or any words of endearment used between you). In a therapeutic way try to consciously focus off of yourself and your own rightfully valid needs (as I said not easy). Inquire about her thoughts and feelings offering validation ( I know my illness makes it hard for you) of her struggles and support. Make it about her. Don’t contradict or argue, just empathize.

This is the only way without a therapist that I can think of to provide support and lower her defenses. The goal of which would be to help her to cope with the adversity you are both facing and in turn enable her to provide you with the realistic support and meaningful validation that you so need and deserve. I acknowledge the initiation of support in consideration of your courageous coping and effort to make the best of the present time should not be your burden but as it stands at present you seem to be the emotionally stronger partner and the one on this forum.

I hope things work out. You so deserve loving support and quality time with your spouse. My prayers will be with both of you.

An end of life doula may be helpful to you emotionally and in getting your wife to accept the facts of your illness. I’ve not had experience with a doula, but my Dad had great hospice nurses that helped my Dad and my sister understand the death process and how to let go. Our Dad was always there for us as I'm sure you have been there for your wife. When my Dad was first diagnosed with metastatic brain cancer, his first words were “the two of are not going to have a Daddy,” The hospice nurse understood how hard it was for all 3 of us. With all of us together, she spoke to my Dad assuring him that we’d be okay without him and that he wouldn’t need to worry about us. She helped my sister and I accept the fact that our Dad would not be with us and asked us to tell him that it was okay for him to go when he was ready to leave this world.
Perhaps you can ask a relative, good friend, your oncologist , family physician, hospice nurse, end of life doula to help you help your wife and you. I’m praying that you find the help you need.

I have the same problem with my spouse of over 40 years! It’s very difficult to have the right headspace with a cancer that drs will tell you is the most difficult to cure. It’s a balancing act of knowing I’m dealing with a deadly disease that one day had me floating on air with a CA19-9 of “8”, and the very next day writhing in pain and being told I have a large mass and chemo is no longer working (that latter turned out to be incorrect). You must be prepared and yet be happy to live life you have left. My husband says things like your partner like take a trip to Europe a few years from now and I’m going beat this thing because I took care of my parents, or some ridiculous nonsense like that. I’m pretty calm and together, but that’s when I go ballistic and let him know how hard it is to keep my brain in the headspace of this balancing act that I need it to be in order to carry on without just being this body that sits on couch all day feeling sorry for myself (which most others expect me to be doing and congratulate me because I’m not). For me, the way I remind others that I might not have a happy ending to my story is to create a bucket list of things you want to do since you are preparing for the end. You can have fun with it! It can be simple like taking a Duffy boat ride in a local marina (these things are no way fit for the ocean!) and then going to dinner afterwards, or if you are strong enough - taking a trip or cruise. My next thing is a trip to Laughlin, Nevada. Let your partner know you aren’t so afraid about your end and maybe they will feel more comfortable about it as well. It’s scary for them, so make sure they have have a good support system that will be place even after you may not be here. Of course, I praying for a cure this year in a vaccine e or what have you, but just in case, make a bucket list of fun things to do!

I agree with you on the balancing act. I have stage 4 nsc lung cancer, being treated with targeted therapy presently. I went through a year and half of standard treatment plus a study drug. I try to not think about the situation at home but when I am at Mayo it weighs heavily on me because they are supporting me on this journey. Fortunately I feel well on this treatment but the future unknowns are difficult. I wish you good days.

I’m glad to hear about the targeted therapy. Mayo is a good place to be!