vp sf

Hi Susan.  My husband's doctor said they could prescribe Ritalin if his fatigue became debilitating. Something to ask about if you wish…  V.

Dear Oldwife, I understand what you are going through.  Two years ago, I took care of my mother for the last seven months of her life, and 18 months after that my husband was diagnosed with Stage 4 melanoma.  Now I'm his partner in that–and, just like you–responsible for the worry, research, communication, managing everything.  People understand that an ill person may focus entirely on their health.  Indeed, they encourage it.  Few know what that means for the person beside them who must shouder everything else, including their partners' needs. Have you seen the Caregiver's Rights?  I discovered it on this site after my husband was diagnosed and I though "I can't go through all this again."  Here's the link: https://online.flippingbook.com/view/287803/2/ .  I found this document (and plenty of therapy!) enormously helpful. I wish that I had had the concept of a RIGHT to take care of myself…to anger…to maintaining a separate life while I was caring for my mother.  It would have eased the emotional burden and allowed me to rest more easily in the love.  This time, I'm a better partner to my husband because I remember that, while there are no limits to the love and the desire to give, there are limits to the energy, patience, attention.  You have a right to, essentially, have a good life while you care for your husband.  Take this right as seriously as you take the responsibility to be everything you can be for your husband.  You will both be better for it.  I send you love and compassion.  Email me at any time.  V.

Sorry to hear that your doctor wasn't as communicative as you needed him to be. The people on this board are generous with their knowledge, but also remember that under HIPAA you have a right to your medical information: test results, copies of scans, biopsy reports, etc. You can request them from City of Hope. CofH also has a Department of Supportive Care with people who can take the time and talk to you and answer your questions. Their slogan is "the miracle of science with soul."  Sounds like you need your information, and a little attention to your soul. Best of luck. V. 

Hello Jeff.  My husband (Stage IV, brain, lung and liver mets) is also a Kaiser member and has been put on Nivo.  I've wondered why Kaiser chooses Nivo over Pembro and thought you might have some information from your fight with them.  I don't necessarily disagree with the treatment, and he is tolerating the Nivo well, but I haven't gotten a good answer about Nivo vs Pembro and also haven't read any real distinctions noted in articles or data I've found through my (endless, late night) internet searches.  Any insight?

Best wishes to you and Amy, 

V.