Caregivers Corner, Treatments for Advanced Disease, Results, Side Effects, etc. (Part 6)

I'm struggling looking for something, anything to say right now. I just don't have it.

I wish for everyone to be able to experience peace in the midst of this crazy disease.

Susan

I am just recently backnfrom a trip as well. I t put me into a better place than what I was since Dave passed. I first spent 2 weeks in Fort Meyers with great freinds who are neighbors 100 ft away from where we live. I had just so much fun! I didn't feel like a 3rd wheel and it was great! Karen and I have always been great freinds but when you are with someone for 2 weeks it is waaaay longer and you are in essence living there. Inhave NEVER been away from home that long let alone stay with any one. We played cards , went to a movie had dinner out a few times ,3 beach days , meal prep , and lot and lots of site seeing and shopping. They drove me to visit other freinds I have only met on a Pc support group. It was the highlight of everthing to meet them and spend time with them. During Daves illness and even though she had so very much going o her world she so unselfishly gave me words of incouragment and there was never a week went by that a Hallmark special sentiment wasn't in my mail box. I am so very very lucky in having so many great freinds ! My freind in Fort Meyers called the day after I got home and said , we booked a cruise in April why don't you see about getting on it as well and I did !!
By the time the beginning of March the formal complaints part will be done in Daves care . Or should I say his lack of care., i read one really great book callec Proof of Heaven by Eben Alexander MD and it really for the first time allowed me to realise Dave is content were he is and I have no fear of dying because I know I will be with him again. It doesn't lessen how much I miss him or Love him and think of him all the time . It has set free my a small bit of my greif if this makes sense to any one reading. ..You think you can cope with anything after you live through each day caring and loving your man knowing full well no matter how hard you look after them or how much you love them that day will be there. It is totally catastrophic! The day, the sadness and the loss never go away.After being with a man for 45 years I guess it never will The sites the sounds the change the great freinds and times gave great memories for me and through my eyes I hope Dave saw them to .So begins the next adventure , never been on a cruise , but so many of the things I hadn't done before I have ! I traveled alone, I was away that long, I had never been to Florida , I had never met freinds on a social media let alone share such love and bond with. I am truly blessed! XOXO 💙 💙 💙

Sue,
I am so happy to see you are still with us. Dave would be so proud of the way you are continuing to live and share your good heart and love with others. As Beth said, an inspiration to us all.
The other Beth

I predict a new cruise addict. There is nothing like the ocean and complete autonomy over how you spend your day to relax and contemplate life. I have 20 of them under my belt. If you'd like to share more info with me (your cruiseline and itinerary, etc) email me at margotknight11@yahoo.com. I will give you ALL my tips from 10 years of cruising.

Sue, I read the tear part and choked up. As my love passed over, a tear came from his eye as well. I took it on my fingertip and swallowed it, so that it would be a part of me forever. The primary thrust of that article is, if your doctor says it is OK for the PSA to be 4.0 because they only consider over 4.0 to indicate "a problem" then MAKE SURE you know the trajectory. 1.7 to 4.0 in six months is NOT OK. Oh to have known that. As is was, my guy came home and said he had "middle age enlarged prostate" because that is what the doctor told him. A short while after, the PSA was 32 and his collarbone was sore. I would do the same as you but all these doctors stand up for one another. "That's what the guidelines said!" While ignorance may not be bliss for the rest of us, these medical types can get away with murder, literally. I am going to speak to my lawyer about pulling his records. I want to make sure I have my facts completely straight. He had complained for almost two years about the constant need to pee.
Just rehashing this is making me feel quite ill so I will disappear again and wish all you ladies the very best.

Margo, I have never been on a cruise. I don't think I could find anyone to go with. I don't want to go on a singles cruise, obviously, so do you have any tips for singles who are not looking to meet someone in the romantic sense? I am very good at being ignored by people as they find my height and accent intimidating (or so I am told). I am 5'8" which isn't THAT tall, but I do have quite the English accent :) For reasons known only to the gods, it is the opposite in a singles situation - something I also dislike as then all the women find it threatening and no one wants to make friends. Maybe I'm just not good socially.

Sue, are you on Facebook?

Post Edited (Moonlitnight) : 1/30/2016 12:02:05 PM (GMT-7)

Antonia I know exactly how you feel because that is how I feel when I rehash Daves lack of care . It is sickening!The whole problem for me lies in the fact that the nurse practioner didn't do a complete examination . How would you ever know especially when PC is symtomless in some men that its there. For Dave the history was unclear didn't know what the cancer was that the grand father had but mother had breast, For the love of heaven its only a blood test no diffrent than looking at cholesterol.I think for you and I the feeling of loss because of neglect of care makes this perhaps even more harder to accept. It is very hard for any of the wives and that is the truth. I feel betrayed by the medical society! NO its not alright that my husband died a very painful sensless death because of it.
Dave said travel ! See something of the world.! I am doing things far out of my comfort zone .I had some of the neighbors over last night just very impromptu .I am finding freinds old and new and I am after that trip put myself in a place far better than I was before I went . Going out doing things doesn't lessen the fact of how much I miss Dave it makes the time more tolerable. .I hope Antonia you know I am a freind . I would think you would be striking at your height. Accents are lovely. Last night the one couple are Newfies and the other couple came her from Holland and their accent and translation to English is very cute at times. One time it would be awsome to meet all of us who are on the most ..love to you all Sue XOXO 💙 💙

I'm going to try to post more often on this thread to keep it going. Not only for new caregivers, but for Sue and Moon and those who have lost loved ones after giving so much of themselves and suffering the heartache of the loss. Cyclone posted such a nice message to me about how Gary's story inspired others traveling the same path, and how much it meant to him and others with similar dx. I often wonder why caregivers seem to stop posting once their loved one passes. Is it because they need to begin a different journey, or because they feel they no longer belong? I am grateful to Sue and Moon for continuing to post. The folks here are the same supportive and wonderful people, and the journey for the caregivers impacted by PCa doesn't end when our loved one is gone.
I know I miss hearing from some of the other gals whose DH has recently passed.
Like Cyclone, I was following their story and drawing inspiration from them.
Sue and Moon, you continue to inspire and I am grateful to you for continuing to share.
Beth

Beth thank you for your continued thoughts.I feel like I belong in a diffrent way than I did while Dave was alive . Many nights of sleeplessness brought me here looking for just anything that could help manage Daves rapidly growing PC. I still feel such a deep all consuming sadness about Dave and just saying the words Prostate Cancer makes me feel ill. I know many , many men will out live this cancer and I am happy for all the sucess stories there are .Treatments that worked, cancer that was found early , men who were screened , all the things that Dave didn't get to have happen in his life time.
But here it is 5 am and I am still brought here to this format and I am not looking for what I was before when I was posting here. Now i read because of the freinds i found here and I care very much about your battles with the beast . I haven't had the heart to go and read the personal new stories that there are .Some how that is hard to do and it bothers me to no end thst some one else and their families are being affected by this horrid disease. One day when I have worked past some of the utter greif I feel I will go into the new posts . I still receive alot of newest in cancer resources to my in box. Even in the last 5 months there are diffrent ways of looking at the kind of cancer Daves was and now they may have even offered radiation that could have given us at least a few more years . I know one day I will read that they have found a complete cure and I will the happiest person to share the joy for all of you .But at the same time my heart will be broken because it didn't come in time to save Dave. Hello to you all, thanks for your freindship.i am still here ! XOXO 💙 💙 💙 Sue

Moon,
Sorry for my delayed response. Work has been all-consuming. I Agree with Beth. Princess is the way to see Alaska. I met a fair number of single older women. With opportunities for gently socializing. There is something to be said for the serenity of the sea.
An artists colony? I am the director of one myself! Sounds perfect for your practice.
Glad you are sticking around but when it time to move on, we will miss you.

Hi Sue and everyone...Sue's post just popped up as I am feverishly trying to edit some of the worst writing on the planet. I need a break from the insanity, so thought I'd drop by as well. Sue, I had no idea that you had been married only four years. That is so very sad. A whole future with him suddenly gone. You are one strong and brave woman.

Life goes on here...with bouts of extreme sadness peppering my days and nights. I have bought a lovely little waterfront house on the big island (Vancouver, not Hawaii) and am insanely busy trying to get various trades to update the mess of a house that was ours, sadly left in the middle of a three-storey reno. I hope he is proud of my efforts and I feel guilty for not praising him more and showing my appreciation for all the work he did. If there is anything that is tearing at my heart, it is the guilt I feel. I find I am twisting everything into pretzels. Our friends all say that he talked non-stop about how much I did for him, how I cared for him etc. and my guilt-ridden brain asks, "Was he just saying this because he didn't feel this way and wanted to?" I just feel that if I had done enough with this ghastly cachexia, he would still be here. Even the two nurses who hurriedly signed the "expected death" form and the palliative care doc said that they were surprised that he passed when he did and why? One called last week to check up on me and said she still can't help thinking about it. How it just seemed strange to her how comfortable and happy he seemed. For over a week he had not even taken an aspirin and was feeling much better, although the diarrhea continued to take its toll.

So that is where I am. Happy yet sad, capable yet wishing he were here to hold my hand through all these changes of lifestyle. It is certainly true that "life goes on."

Beth, Margot, Susan, Krissy and all, I am so hoping things are better with your guys and keeping it all crossed for you and them. Love and hugs, Moon.

Haha well I thought you said you'd been with Dave since you were very young :) I should have figured that one out. Yes, to my mind, Don was just so thin that I couldn't see how he could survive. He wasn't getting any better and wasn't on any treatment except for good food, lots of love, and various supportive things via PICC. I have to pay the CRA over $48,000 in income tax for all that. Ugh! There goes my TFSA.

I gave all my sweetie's clothes to his son, who was very pleased with them. I honestly think that seeing them there was worse than not seeing them there.

Margot posted about the results of some research into clustering of cancer cells (as they metastasize) Too late for our guys but very positive research for all cancers.

Yes that article has had a lot of mileage and makes it very clear that prostate cancer isn't always the cancer a man dies with and not from. It makes clear that the trajectory is important as well. Go from 1.7 to 4.0 in six months and someone should be taking a closer look.

I really would like to get some sort of acknowledgement of negligence on the part of Don's family physician but these guys all stick together. I may approach a lawyer about it just to see what are the chances.

Hugs to all, Moon. x

Beth;
So very sorry to hear of all that is going on in your world. Hugs to you and Gary. There is a trial of the protocol that Jimmy Carter had so much luck with but only 28 are in with PC. I was looking into inilliup inhibitor drugs for Dave. From what I read this works on disease that Braci 1 or 2 driven. I think that Dave had this gene because mother had breast cancer, grandfather had prostate, maternal side of family, Dave's Aunt had breast mothers sister . Now if Dave was
A woman look how different he would have been treated going in for a physical.. Yet these types of cancers ate called gemitioral and when a man's mother has had breast men are 2 to 5 times more likely to aquire PC
.I am in the process of getting a new gp and I am going g to Insist of the blood test for ovarian cancer. I want my daughter to have the same because she definitely is high risk 4 generate in line as well as as Braci 1 and 2 carrier. Blood test for ovarian is CA 125.i. it costs alot more than running a psa but I think worth it.
Beth I know how you feel right now and I hope something can come in the form of a trial. Hugs and Love Sue XOXO 💙 💙 💙