As I have said before, the true unsung heroes of our fight against advanced prostate cancer are our caretakers. Our caretakers are our saints, they help educate us, they advocate for us, they shield us and they make us as complete as we can possibly be. They improve our lives and help us get through the day with love and enjoyment.
Sadly, they do this for us at great personal costs. A caretaker posted the following on the advanced prostate cancer online support group. I thought that it was important for all of us, both prostate cancer survivor and caretaker. It talks of her frustrations, pain, her reality.
I attempted to read the link but the uro site wasn’t very friendly. That said, I could say that as a spouse I know more about prostate cancer than I ever wanted to know.
My husband is so overwhelmed by the medical jargon, poor explanations by previous oncologists (yes, we fired him) the confusing sounding names of medications, treatments and just about everything to do with his cancer. I do the research, find layman friendly articles and generally find myself explaining to him what is going on with his disease progression.
I have an advantage by being a nurse but yet to understand some of the information I too need a medical dictionary. It is overwhelming. I am not just the wife and support, but his advocate in wading through a confusing and scary disease that has no cure at this stage.
My husband doesn’t avoid his diagnosis, disease, treatment and projected outcomes but doesn’t want any doctor to give him time frames. He tells them to tell me. Luckily, we haven’t come to that. He talks openly about how he feels, what side effects he thinks he might be experiencing and he does read the brochures or booklets provided by the pharmaceutical companies. He is better about discussing his feelings, side effects and does ask questions when we see his oncologists.
We have been dealing with prostate cancer for 10 years. This month is the anniversary of his prostatectomy and he was clear for two years after that. His rising PSA began in 2006 and become hormone resistance in 2011. He had soft tissue mets initially followed by bone mets. He has taken Provenge, Zytiga and Xtand
He depends on me, each step of the way, to explain the treatments, CT scans, lab reports and what it all means. I have been understanding of him, frustrated, sad and grieve for the loss of his energy and his sexuality.
I tell him when he needs to go talk to someone because he’s being an angry jerk. He tells me when he doesn’t want to know what I know medically or see on CT reports. I never explained the last one to him, only that his bone mets had progressed. He didn’t ask, I don’t volunteer.
I have never pushed or asked for our sexual relationship to resume because I am educated and know it won’t. Period. Hormones to suppress testosterone suppress libido and women need to know that. We have talked about it but it isn’t important. He is alive. There’s more to a relationship than sex.
I have this wonderful group for support and encouraged him to get involved but after years of a government job he swore after he retired at 60 to never have to log onto a computer daily again! He likes when I read him your posts.
I also have a group of women I am close with at the touch of a keyboard or phone and they provide a tremendous amount of support and we all stay on top of the new drugs and treatments available for our guys! We support each other when we are frustrated.
Maybe a study on how patients and their caregivers find and are given information so that they could understand would be a good one as well as how they cope day to day.
I admit I am stressed, anxious and recently I have been diagnosed with stress related hypertension, but I find my own outlets of talking to my “blue sisters” emailing them, Face Booking them, reading and responding to group posts and by Humor. Humor has always been my shield and I joke with my own doctor that I am fine and she will know when I’m not when they call her and tell her I have been picked up for marching in my own parade nude down Main Street!
Am I worried I won’t do a good job taking care of my husband when he can no longer care for himself? Absolutely, but I will do the best I can. I try to take care of myself and not think of the possibility that I will be alone, I have been alone before and I will survive. We all will be with each other.
I read, walk, paint and still work part time and have a network of family and friends who are a great support.
I would like to read further studies if I could ever get the uro website to function!
I give virtual hugs, bright blessings and heartfelt thanks to all who post on this group, who live with the stress of this disease, the uncertainty and the pain. Pain both emotionally and physically. As a spouse, caregiver and advocate all I can say is Keep Up The Fight! Support PC research! Love each other!
If you wish to join us on the advanced prostate cancer online support group send an email to:
In your email tell us why you wish to join the group.
Joel T Nowak, M.A., M.S.W.
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