I am new to this network and write as a caregiver for my wife, who has struggled over the last dozen years with a variety of rare cancers and cancer-related issues: paget’s disease of the skin, underlying squamous cell carcinoma (both gynecological issues) and, just recently, urethral cancer (she just had surgery for that this week). The surgeries she has had include excision of tissue and removal of skin, coupled with skin grafts. She also had radiation treatments in the past. Between treatments for these problems, she has lead a remarkably normal life and bounced back very well from each challenge. I have been there with her every step of the way and plan to be in the future.
What I am really concerned about now is that my wife’s spirit seems to be withering away—she was particularly devastated by the last diagnosis and having to face surgery yet again. In the doctor’s office we spoke to a psychologist, and during that session my wife said she did not want to live any longer. Given her health challenges I understand why she said that, but it made me feel pretty sad and sorry anyway. It also made me think that perhaps I can no longer offer the kind of help she really needs anymore. She assures me she would never act on this impulse, and I do believe her. But nonetheless, I felt pretty bad for her and did not really know what to do or say to make her feel better. On the drive home, I felt like the breath had literally been sucked out of my lungs.
I have read so many comments from other caregivers, patients, and survivors in these boards about how others just ‘don’t get it’; that they feel alone and isolated; and that people often say insensitive things at the wrong time in response to hearing about cancer. I feel all these same things right now, more than I ever have in the past, and so I am turning to this network for support and advice. I feel that now more than ever I need some collective wisdom and understanding that only those who have been in my shoes can supply. In addition, if there is anyone out there who has been a caregiver or a patient with these same combinations of health issues, please let me know! I have not found many people who have dealt with all of these simultaneously!
Spring is here, but I feel pretty empty. I want my wife to be home, and while I wish I could somehow bring back that happy person she was before, I know that we may need to redefine happiness in a new way.