My husband has stage 4 advanced prostate cancer - at diagnosis he was 53 his PSA was 22 Gleason 4 + 3. His cancer is in his bladder with some in nearby lymph nodes. He just turned 66. On July 30th his bladder was removed it was literally in shreds and we were told it was a very high risk surgery - he might not survive and recovery would be rough.
He did survive - so far his kidney's have failed twice, he has had sepsis, pneumonia and now we are under the care of hospice. He decided to leave the hospital so I picked him up in his sports car with his dog riding shotgun. It's hard to tell what's going on but I believe he's having kidney (renal failure) - fatigue, no appetite, nausea, confused. Hospice nurse prescribed a steroid prednisone 20 mg which seems to have reanimated him. It is hard for family members who aren't around all the time to understand why he isn't answering texts, calls, etc.
It's hard to believe but many well intentioned family members and friends have asked me his "prognosis" and the answer I give is - I don't know. Kidney failure can be fast or slow. Why do loved ones and friends seem to not understand that no one knows how much time he has left. Why he doesn't eat. Why he sleeps and is fatigued. Why aren't you doing more?
Has anyone here had a similar experience? We had hoped that he would be able to go off hospice since now his prostate cancer is in his bones and growing slowly. Unfortunately this feels like a very long goodbye and I do feel blessed to have this time with him. I'm a loving wife and have done everything I know how to do - doctor's appointments, over 30 hospital visits since January 2019, etc. He is the love of my life and while I know it's not my fault - feeling guilty that I haven't been able to do more while I have done everything I know to do. From MD Anderson to food to keeping records and just "being" with him.
Thank you for this forum - while my comments and posts have been few my husband often read posts and have learned a great deal.
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Caddie28
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He has been so lucky to have you at his side throughout this. The burden on you has been and continues to be tremendous. Yeah, people don't know what to say, and we all say foolish or inappropriate things when we don't know what to say.. What is there to say? But my experience is they just want to be useful, somehow. Don't be afraid to assign them chores - cooking, cleaning, washing the car, anything.
Wow. How fortunate he is to have you by his side. Sounds like a very tough road but not a lonely one thanks to you. I hope and pray you guys get more quality time together without much suffering. Lots of great info here if you need it.
He's been battling this for 13 years now. I'm sure having you by his side has meant everything to him. Many of us like myself are in this battle alone. He's a lucky man. I can only hope and pray for the best outcome for the both of you. Miracles do happen.
Only people who have been through prostate cancer understand the unique challenges it brings.
You have done everything within your power for your husband. There is no cure for mortality. You’ve climbed this mountain with him to be at his side. May your resilience continue to fortify you in this struggle. The daily uncertainty PC brings, is exhausting, and you’ve been dealing with it for 13 years. I can only imagine what that feels like.
Thank you your post inspires me to allow the ebb and flow of life and know we do our best - resilience - fortify- 2 words so grateful to be reminded of
You are an truly amazing wife who is going thru such a hard time. All I can say is that God bless both of you and shower his mercy on the exemplary couple. Best wishes.
Hi Caddie28, you are amazing! My wife is too so I feel lucky like your husband. I just started down the road that your husband is on. You’re right, there are some people who “get it” (meaning they understand the situation) and many others who don’t. I found it best in my early journey to gravitate towards those who “get it”. I wish you and your husband the best on your journey. I know it’s not easy staying strong.
Hi Caddie, your post resonated with me. My dad had bladder cancer, and when his bladder was eventually removed after a decade of recurrences that started a series of events that led to his death from an uncontrollable infection. One day he was outside trimming hedges, the next day he was in a hospital with a blocked colon, and a few weeks after that he was gone.
Last year I was diagnosed with the double: bladder cancer and metastatic prostate cancer. They found a prostate tumor in the bladder near the bladder tumor. I'm doing very well but constantly have to explain to some people that I'm not cured, that I still have cancer, and I'm still on treatment. I get a blank look from them when I say treatment will last for the rest of my life.
It seems that many people want to see us as either "completely healthy" or "almost dead", and if we don't look almost dead, OMG, we must be a miracle cure. I've even had people scold me for suggesting my cancer could come back. It seems they can't handle uncertainty very well. Sigh. I don't have an answer for you, just commiseration.
My wife has been amazing through all this, so let me thank you, on behalf of your husband, for being amazing to him. This is not easy! Patients and caregivers are faced with life and death decisions and potential trade-offs between quality and quantity of life. Our knowledge of cancer is in it's infancy, so we really don't know enough to always make the right decision. Some men take little or no treatment, switch to being vegan, and live for over a decade. Others travel the world looking for the best doctors and treatments and barely last three years. So believe me when I say you're doing everything you possibly can, and there's no reason to feel guilty or second guess yourself (other than the obvious: you're human).
Much love to you ... The duality of a broken heart along with toughened up enough to not expect people to understand, unfortunately. They don't... Actually, often times, neither do I.
It becomes a strange existence .... It's like 100 lifetimes rolled into the years since diagnosis.
Being in the moment helps.. I have begun to watch the 'habit mind tapes' that circulate. As one comes, I just say, you are a tape playing in my head.. I'm here in the moment.. and I'm going to shift that habit tape to something better...
This has helped me.
We here know the ins and outs, the ups and downs and the not knowing. Heck.. the docs don't know either.. I often say... so far so good.. and feel grateful for the moments..
We do get so tired at times taking care of our loves. Don’t forget your own interests and activities. You need them to divert your thoughts and maintain your energy. You both are awe inspiring.
Caddie28 what a very long Marathon you have been on. My heart hurts for the aches and pains you have endured on this long journey. I just prayed that God would give you and your husband the strength to finish this horrible race well.
Do you have a caringbridge site to update your family members and friends and let them know your needs? I find this the best way to communicate so that we don't get overwhelmed with questions, texts and phone calls.
So many have written beautifully here expressing to you their understanding, support & encouragement. I echo their words & am sure you will continue doing what you have been -- totally loving your husband every second of every day & continuing to be at his side for as long as he needs you there.
You are a great pillar of strength to your hubby. All the good brothers and caregivers here have given great advise. Do take good care of yourself so that you may ease your husband’s pain and give him lots of love and joy.
Such a sad post. I do hope things will work out. I can see you pulling up in the sports car with the dog riding shotgun. I hope that brought a smile to your husband's face! Reminds me of One Flew Over the Cuckoo's Nest. All my best. Monte
Dear Caddie... You're an inspiration to all of us... I fight "the creature from the within" with laughter.. When people see me and I tell them I'm fighting two of them they tell me I'm the healthiest looking person who's fighting cancer. So people can't understand that cancer is in all of us and that it takes "something" to trigger the beast. We don't know what that trigger is yet so we blame it on "this and on that". It's only when that trigger is released do we understand what cancer is all about, until then "who cares?"...
I feel bad about your dear Husband having to fight "the creature from within" but If I could I would try to help him with humor.
You've been his Caddie for a long time... so keep it up and don't get depressed... You're his angel. Bless you all....
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