I understand the feeling alone part. My husband and daughters have been great. I couldn't ask for better support. And yet, I often feel alone because as helpful as they are and as much as this is hard for them, they don't have cancer. I am so grateful that they don't. But it is an isolating experience when you are the only one with the disease. It hits me at odd times--when they leave for the afternoon to visit and hold a friend's new baby or fly to a wedding I was invited to but can't attend or are laughing as they cook together in my kitchen where I used to be the head chef giving orders and making them laugh, or late at night when they are all asleep and I can't rid my head of worry and find sleep for myself. I am thrilled that they are happy and healthy and living full exciting lives, but it makes the life I'm leading right now seem all the more depressing and pain-filled in contrast. And lonely.
I make my living expressing myself through words, yet I can't find the words to tell anyone what a nightmare having cancer truly is. There are just so many components to it, so many complications, so many side effects, so many emotions, so much maintenance, so much to worry about and stay on top of, and it is overwhelming most of the time. It feels like a full-time job with no time off. I find it so hard to have the energy to focus on anything else besides dealing with the cancer. Phone calls from family and friends drain me. I don't have the energy to keep up with holidays, birthdays, anniversaries, who started a new job or relationship, who just came back from vacation, etc. After decades of not only running our household and helping my husband and daughters' lives run smoothly, but being the one to keep our extended families close and in touch with each other, I had to cut the strings and let them all fend for themselves. I just can't do it right now. I can't worry about being polite or whose feelings will be hurt if I miss their special day or don't return a call. I have to do what's best for me minute by minute, hour by hour, day by day. And those who understand and are still standing by me when this long nightmare is over will have proved they are true friends. Those who don't understand why I couldn't just pick up the phone to call and say Happy Anniversary or listen to the details of their latest fight with their boss will most likely fade from my life.
I do feel that my husband and I are in this together just like we've been in so many things together over the decades where our roles were different but equally important. We raised our daughters together, but the daily hands-on work was mostly me. We built a business together, but the daily hands-on work there was mostly him. I was there for him when he lost family members, he was there for me when I lost family members, and the pain wasn't always equal, but we shared it. Now I have cancer and I know that just as the cancer is eating me up, the fact that I'm suffering is eating him up. And just as I have moments when I feel alone, I know he has moments when he feels alone because he can't take my pain and fear away and because he wants to understand what I want and need, but doesn't always. And because no one else understands exactly what he is feeling and suffering because he's the only one who is my husband and best friend and his feelings are unique to him and him alone. He wants to fix it and he can't, he wants to give me what I need and I can't always tell him what that is because sometimes I don't know myself. After 33 years together, I'm sailing into uncharted waters for us and it must be terrifying for him to not be able to grab the wheel and steer us back to the comfortable shore where we've spent so many happy years.
I think talking to each other, sharing your fears, your anger, your frustration, your gratitude, the small things that give you joy, the things that terrify you and keep you awake at night, is the most important thing you can do to truly be in this together. I would rather have my husband say, "I can't sleep at night because I lie awake worrying that I'm going to lose you," than keep a stiff upper lip and tell me over and over again that he is fine, I'll be fine, everything is fine. Not being able to shed a few tears together, rage at the unfairness of it all, and hold each other until we feel that we are strong enough together to make it through another day would make me feel completely alone. That isn't the answer for everyone since all relationships are different, but that's what works for us and has for many years.
I hope you find what works for you and your husband.
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4