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"Sue Saddened Wife" Continuation Thread 3

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Posted 8/26/2015 3:25 PM (GMT 0)
Please use this thread to continue any conversations started in the previous continuation thread -- "Sue Saddened Wife" Continuation Thread 2 -- which may be becoming too long for the forum software to manage.

Thanks
Posted 8/26/2015 7:58 PM (GMT 0)
Kathy , OmG girl I just read about what you posted about your husbands back surgery. My heart goes to you for all the stuggles you both have had to endure. I have never heard of the foot problem he is now having. Hope they can fix that and quik.
Daves whole day has been a struggle and home care sent the home acessment therapist over to see if they can supply us with things to help manage Daves care .So I think a wheelchair a electric hospital bed are ordered for us to use. I said ok to having a girl , personal support worker come to help in cleanliness of Dave .It is very hard to give up our personal privacy to have people in and out of our home but I know I can't do it alone .it has been 6 nights already of being up every hour on the hour. Monday night being the worst went I put my back out trying to help him off the toilet. Think ahead if you need equipment in place before something catastrophic happens.3 months ago I said we should change out that toilet In the bathroom you use all the time for a chair height toilet , no he said I am fine with a standard height one. Listen to yourself you know, men just don't. Dave is 6 ft and that extra 4 inches makes a huge diffrence when you are getting up and down.
PSA results from Wed 9,153.8 up from 7,862.2 taken 6 days previous on the 19th So we know how fast this is growing, they say QOL is paramount so far I am not happy with Daves edema from orders of fluids putting on 12 lbs in a week.The constant reminders to fill out do not resisitate papers because if it wsd their husband would they want to ? The papers aren't going anywhere andI hope Dave isn't either. The days have been a challenge each up lasts 20 min to half hour before I can talk him Into going to bed.i thought 2 hrs of sleep in row after 6 days would be nice. That wish is has now increased to 4 hrs with this killing sore back.
well that's my update Take care to every one. I have learned to love all the rough times in the past few days as at least I have Dave to share them with.💙 XOXO 💙
Posted 8/27/2015 4:30 PM (GMT 0)
Sue, I forgot to subscribe to the new thread and just read this - after I'd put my makeup on for the day. I have to reapply it. I am so, so sorry that you and Dave are going through this miserable time - him with the dratted cancer and you with that and your back. All I can say is that we all send you much love and caring thoughts and that, no matter how bleak things appear, "miracles" do happen. They are rare of course, but we must always have hope.

I did sign the DNR order as I cannot imagine anything worse than trying to resuscitate someone whose soul is ready to leave. It just seemed wrong to me. I can see it if someone didn't have an advanced disease, but not otherwise.

I am doing IVs on Don. I was shown how and have subscribed to the nursing thread on YouTube. He has a PICC, so it is not too difficult. The difficulty is trying to figure out (along with the researchers working on this) what the right protocol is. MDA I believe is going to trials soon but they have an added molecule of something-or-the-other to get around patent issues. The main issue right now is the cachexia as he loses weight by the day. At 6' 6" he should be having more than 1800 calories. He just went on Megace and so far no SEs - but no increased appetite either. Yesterday he had two units of blood and apparently scarfed a lot at lunchtime and throughout the 6 hours it took for the transfusion, but it's not going anywhere. Very little pain (touch wood) and not sure what is happening with the diarrhea as of this morning as he is still asleep and may have risen to perform in the night. Just heard that he had "half and half" in terms of diarrhea. I won't elaborate...

Susan, Beth, Theresa, Carol, Krissy et al... love and hope xoxox
Posted 8/27/2015 5:24 PM (GMT 0)
Susan, (myman) thanks so much for posting my comment on this thread.

My goodness Sue what you have going on and how you have the ability to keep going despite your back and health. I think of everyone here and what they endure to keep their man going. I love reading your journey and updates. It makes us stronger knowing we have each other.

Thank you to all of you!

Enjoylife (Cathy)
Posted 8/28/2015 8:13 AM (GMT 0)
Here we are at the place I never ever wanted to get to. The Dr came tonight and figures Dave just has a few days left . So now we must switch to keeping him comfortably out of pain. But I will not allow him to be drugged out of his mind. The past couple of days I think his mind hasn't been very clear maybe because of the amount of active cancer .His Psa from Monday was 9,153.8 and it goes to show how devastating his cancer is but his will to be here with me has been very strong. When we join a forum such as this its because we are so activly searching for awnsers we aren't getting from our Drs. We know alot of family and freinds will say if you need anything dont be afraid to ask but they know we never will. Here you can ask for help and advice and support and its here were you find it. We have probably amazed more information and knowledge than what some of the Drs treating us have .They will never understand PC in the way we do . Tonight the Dr and I had a chat about Pc screening and I again heard those words we put to many men in diapers and make many of them impident. To which I responed do you really think sex is the most important thing to loose and I would gladly take another20 years with my husband in diapers. My husband is dying because he is your medical sacrifice. I told him how there are at 19 various prostate cancers .He told me he is 65 and probably has it to, I said look at Dave is that what you would ever want for yourself .You say it causes harm look at the harm its caused Dave because she didn't do his screening. .I have had 6 nights and tonight makes 7 of only 2 or at most 3 hours of sleep. I have done everything I my power to save Dave. No rock has been unturned. Had I not done it all I would have had regrets I didn't do more. I won't beat myself up but medically more should be done.We should have everything explained, and our questions should all be awnsered. We should never leave a drs with more questions after we leave. I think everyone should have a cancer navigstor who helps us understand the decisions we need to make as well as the information we recieve. Point in case Dave had a bone and ct scans on the 12 on the 19th the copies were handed to us but never explained item by item..it was here is your copy bye!
Well I will just say thanks to every single one of you you need a whole mountain of support to live and get to where I am with Dave 💙💙💙 XOXO
Posted 8/28/2015 9:19 AM (GMT 0)
Sue, so sorry to,read those first two lines of your post. There is nothing to say, except that we are all here for you. My prayers are with you and Dave.
Posted 8/28/2015 10:56 AM (GMT 0)
Sue dear,
My heart sank when I read your post. And yes we are here for you as you have been for every one of us.

You didn't accept the way things have been for Dave since the beginning - his late diagnosis due to the negligence of health care workers, you've driven home the need to speak up and even when you didn't get the result Dave deserved you continued to move forward to help him in any way you could. You have done everything, Sue. You have made this forum a better place.

Please know we will continue to be here and keep you in our hearts.
Sending love to you & Dave XOXO
Susan
Posted 8/28/2015 1:32 PM (GMT 0)
So very sorry, Sue. We are all here for you, as you have been for us. Our thoughts and prayers are with you and Don.
Posted 8/28/2015 1:37 PM (GMT 0)
So sorry to read this Sue. My thoughts are with you and Dave.

Lisa
Posted 8/28/2015 1:41 PM (GMT 0)
Sue through your words I have come to know a strong, kind, loving wife.  I hope when I need to I am able to live and support Steve like you are supporting Dave.  Please forget the past, have no regrets and spend these last few days with Dave your way. I got great advice from a nurse who is a friend and she said "Carol -call in an army of friends family and help when it is needed as Steve is worth it".  You and Dave are worth anything anyone can do for you and more so take it.  You were a woman who educated herself and was able to use the info to help Dave. Now is your time to put your arms around Dave and whisper loving words to him. In your alone time and when your mind will not shut down think about how we are all following your example and how we can not thank you enough for all you have given to us. Please let us know how it is going when you can.  Carol
Posted 8/28/2015 2:59 PM (GMT 0)
Sue, I am so sorry to read this. It is proof that love and effort cannot always cure, because if it could, Dave would be running marathons by now. You are the most dedicated, loving and nurturing wife and this is obvious to all who post or lurk here. It is especially obvious to Dave.

I'm sure we will all be checking our emails regularly for updates and pray that they will be good ones...and, if they are not, you will be right in saying you did your very best. Sending much love xoxox

Post Edited (Moonlitnight) : 8/28/2015 12:08:21 PM (GMT-6)

Posted 8/28/2015 11:41 PM (GMT 0)
Hi all, sorry to see all that is going on. I hold out hope and am praying. Somehow I managed to not cry yet but I know its coming.

I am ok, Paul is ok. My Godfather is trying to set up so Paul has his surgery in Cali just before we come home. It might work.... I have still been having pain and GI symptoms but nothing near like our men are dealing with. I feel like a baby for even complaining. BUT colonoscopy and EGD Monday.... yay me...

My RN-MSN classes have begun and I am trying to get into a routine. I think the next 5 years I will be taking classes with just a couple weeks off over Christmas..... What have I done?? I am thinking why stop- maybe getting my doctorate is what I need. It feels good to be learning but I need to figure out balance. Paul is amazing to support this like he does. Class seems doable, and not too intense- just the learning curve and getting back in the swing of a routine. My boss changed my hrs so I am leaving a lot earlier (and going in earlier). We had eaten dinner already and it wasn't even 7pm tonight and that felt soooo good.

I also got my midyear review at work which was amazing and seem to be being noticed a lot more by other management which feels good. I think seeing on paper just how much I contribute was good for me, as I feel that my need for FMLA and sometimes without notice puts my coworkers running shorthanded, but I give them flexibility as well whenever I can.

I am a bit worried as I got a copy of my last CT results that I had when I was admitted.... I have the beginnings of emphysema. Haven't had a cigarette since I saw that- both Paul and I have stopped smoking completely.

I then got my gene tests from 23&me which were done as part of a lupus research study. I didn't expect to get the data so was surprised. I have sooooo many genes for high risk for prostate cancer that Paul is teasing I gave it to him lol! I also have a bad gene for Alpha-1 which I am exploring more. Probably why the lungs are crape and maybe contributing to the GI and liver crud. Will discuss with GI doc on Monday. Not too worried about this, but wishing I knew much sooner. Already getting the girls tested for this.

This weekend will be nuts with cleaning, packing and then prepping for Monday's procedure. I can't believe we will be on a real vacation soon!

Well I hope my boring life has helped take your minds off your own problems, even if only for a minute. Know you are all in my hearts and thoughts. Sorry I haven't been emailing anyone- just busy and kind of tired lately.

One cool (at least I think) thing we just did- we raised our sofa with taller legs. Paul being 6'7 and me 5'9 the sofa was too low and hard to get in and out of. Now its perfect height for us and not such a struggle. I don't know why they don't give the option on sofas to have them taller is beyond me- the elderly, tall and ill would really benefit from this a LOT. Who would think a few inches could make such a difference.

Love to you all!
Posted 8/29/2015 7:25 AM (GMT 0)
Hello Sue,

Just wanted to let you know you and Dave are in my thoughts, Dad continues to fight to live, doctors and pallitive care tell me he has exceeded what was expected to be his life expectancy.

You and Dave have been so strong and an inspiration to us all, god bless you both you are in my prayers.

May god give you the strength to cope.

Best wishes
Theresa
Posted 8/29/2015 2:07 PM (GMT 0)
Sue and Dave, thinking about you for much of the night, as well as of my own sweetie, during an attack of insomnia. Asking the Powers-that-be that something wonderful will happen for you and, in the interim, that strength and love sees you through.xxx
Posted 8/29/2015 6:02 PM (GMT 0)
Sending love and prayers to you!
Posted 8/29/2015 9:49 PM (GMT 0)
Sue, You are close in my heart and mind. Sending good thoughts and peace to you and Dave. xoxo
Posted 8/30/2015 12:38 AM (GMT 0)
There really are no ways of ever saying just how heart broken I am today. At 7:07 this morning as I held his hand Dave was set free of the battle called Prostate Cancer . There was part of me that has gone with him.The past few weeks have been the worst as every turn offered no hope and worsening mets to long bones as well as soft tissue liver adrenal and I am sure the past couple of weeks in bladder and bowels. We have not slept for any of the nights for 2 weeks were up every hour as many as 2-3 times sometimes for a drop or 2 of urine to get out. Urgency and frequency have been a constant since Dave was diagnosed with PC. It is a living hell to have known you have done everything you can to get help and nothing has or will ever work.
We completed each other he was my everything ! Even last night when I put my head on his chest and cried in agony of losing him his hand stroked my hair. He wasn't here with me yesterday at all and slept didn't eat or drink even when our daughter Corbie son in law Brad and grand children were here he just couldn't get up and the only times was when he still thought he had to go to the washroom. How ever the breathlessness and the risk of him falling made me tell him he had to stay In bed , catheter and depends have been main stays .I was giving him pain meds in a iv every 4 hours
I don't think I will ever forget his daily struggle to try to stay here for me. He did it all and in the small hours of the morning I knew he was not able to stop the cancer..! Couldn't wish any more for this tortured body of his to enudure any more, I know a lot of you have folled this tread and I know I have alot of freinds here and Dave to was always touched by the knowledge you shared and lets hope 4 you keep o educating and sharing here about what you learn as well as giving cancer the human touch .Freindship makes the world go round. Love and hugs 💙 💙 XOXO 💙 Sue
Posted 8/30/2015 1:24 AM (GMT 0)
Sue,

Words aren't enough for how sorry I am to read this about Dave. I think we all knew it was coming but
were also praying for a miracle. I know he took a piece of your heart with him. Love and prayers for
your comfort.

Lisa and Frank
Posted 8/30/2015 1:45 AM (GMT 0)
Sue, How deeply saddened I am to read your post. Your love for Dave is strong and you both have been so very brave. You are are thought of, prayed for and loved.
xoxo
Susan and Don
Posted 8/30/2015 2:43 AM (GMT 0)
Sending gentle hugs your way Sue, as I know there are no words.

I am here for you when you are ready, and will be praying for you and your family in the coming days.

Love you!
Posted 8/30/2015 2:47 AM (GMT 0)
Dearest Sue, your heart must be broken. This has truly been a love story as well as a thread on your daily struggles. May you have peace in your heart. Love Antonia and Don xxx
Posted 8/30/2015 3:16 AM (GMT 0)
Sue so sorry.  Find comfort that Dave has no more pain/ tears or sorrow after having so much for so long.  My condolences to you and your family. Please continue to let us know how you are and how you march ahead in life.  Carol  
Posted 8/30/2015 3:46 AM (GMT 0)
Sue, very sorry for your terrible loss. Dave was so lucky to have the devotion you gave him. Peace to you, and your family.
Posted 8/30/2015 4:07 AM (GMT 0)
I am so sorry, horrible to read this news. My thoughts and prayers are with you Sue.
Posted 8/30/2015 5:34 AM (GMT 0)
Sue,
You have lost your soul mate and there is nothing to say that can ease the pain you are feeling. I am glad Dave was right there with you when he took his last breath. I am thinking of you and sending loving thoughts your way tonight, your first night alone...how hard it must be. Do let your family and friends love you and prop you up during this sad, sad time.
Beth
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