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Posted 12/31/2013 10:03 PM (GMT 0)
So I hesitate to write this because I don't want to sound unsupportive, but I am feeling so despondent and lonely. What used to be a relationship of laughter and conversation is now so quiet. My partner not only unable to speak at length, but due to the meds, spends much time sleeping, and when awake has his eyes closed. At times he is gruff to the point that I just spend time in my room only coming out to give him pills and meals. When I go out of the house to do errands, he doesn't like it. He is in considerable amount of pain as I have described before, and is limited in movement. I am not blaming him or me for the changes. Just acknowledging that we are at a different place in our relationship, and this illness, and I am hating it. Thanks for listening.

Susan
Posted 1/1/2014 10:32 PM (GMT 0)
Susan, I am sorry that you are at this point in the journey of cancer. No need to apologize for sounding non supportive. You are at a very low point of the journey and responsible for only taking care of your husband and yourself, no one else. You have every reason to be despondent and lonely, the lack of conversation, watching them sleep more than awake, and knowing how much pain they are in when they are awake makes one feel even guilty for needing some conversation from them and it's more than they can give. It's again an adjustment to your expectations and your needs. After having been there just 6 months ago, it's seems like just 2 or 3 months ago I was there. I feel guilty saying this, but I am so glad it's over, that ugly journey of our last few weeks, and yet I would do it over to have him back if only for another day week or month. There is only one thing I would do differently , I would slow down! stop cleaning stop shopping stop do anything and everything to keep my mind off of Jim disappearing from me. Even if he was asleep I would lay next to him him even more than I did! and read! knit watch TV just to hear him breath and groan in pain, but I would be next to him MORE than I was. I passed many opportunities when he was awake and just relaxing the best he could, I kept busy to keep from crying to keep from telling him how sad I was going to be when he left me, that I would change if I could! and the house and my my family would have understood.
Susan, we each handle all of this differently, and this forum, as much as it helps answering some of our questions about the cancer journey, it's also an added reminder of what we went through, and that there are so many others out there going where we just survived and many times it's very hard to keep reading everyone journey of our past, it's just to painful. Some of us need to move past that journey, it's not that anyone of us don't care, it's just too painful and we have taken just one or two steps forward and reading everyone's pain makes us take one step back. I for one don't come here on a regular basis, it's just tooooo painful. I am praying that you find the strength necessary for his final journey, when ever that maybe be, just know many of us have been there too, and that the majority will always BE BACK to this forum at a point to support and help you through yours like you were there for us.
I am praying for a less stressful 2014 for myself, and a more healthier year than 2013 was for me. I've learned the living one day at a time, I have that down to an art....now I want to plan time to do things for myself....a month ahead of time! he'll! maybe even plan where I will spend next Christmas and pray it happens! I deserve to plan ahead, I deserve to be happy again, and Susan you will deserve it and attain it also. Hugs and prayers coming your way, and no you don't have to be strong everyday, that's not possible. LuAn
Posted 1/2/2014 12:44 AM (GMT 0)
Radsgrrl (Susan) my heart got weary when I read your post, I've been there so many times. Someone gave me words of advice."you are not in this for the short haul, instead you are most likely in this for the long haul, you are going too fast. Take care of yourself and from time to time go out with a friend, family." I have been trying to do that more and it's helped. I will have a family member or friend over so I can go out worry free. From time to time you need to take a breather, doesn't need to be long an hour or so, but it's necessary. Unfortunately, I didn't figure this out until this past year. It's an extremely difficult journey as Jitters pointed out so eloquently.

Jitters (LuAn) your posts are incredible. Even though I know for you and Passages it is difficult for you to come back to this forum and I understand why. Such words of wisdom and heartfelt words on where you were and are now. You are an amazing woman.

Dreamer (Pat) I've been reading your posts as well as Tednsal. Hope things are better.

To everyone, may this year bring blessings, strength and hope for the New Year.

Cathy
Posted 1/4/2014 9:56 PM (GMT 0)
I so appreciate the wise words from the ladies who have journeyed back here in spite of it bringing back the pain of losing your spouses. I know it is a struggle, but your are giving of yourself in a way that is so meaningful, I can not begin to say.

Thank you,

Susan
Posted 1/8/2014 5:08 AM (GMT 0)
Hello All...sorry to have not posted lately, but the movers came on December 27th and then the furniture was delivered on the 29th. So I have been acting like (what my dear husband says) "a termite in a yo-yo" ever since. I can't stand an unorganized "mess"...so I try and try to empty boxes, but there is no place to put what I have emptied out. As I said before, we moved from a 3100 square foot house (with mega storage) to a 1500 square foot house with absolutely no storage space......but I am working through it. Called Habitat for Humanity to pick up "stuff" and will take another load to a homeless shelter, etc.

Husband had no energy or "get up and go" to be of much help packing or unpacking, so I went at it "double time" to have him not feel so "useless". Both of our sons and their families came to our aid and were very, very welcomed and helpful. The house that we bought, had to be renovated in several areas and the work has not and still is not completed, but what could be worked on was by the sons and their families, which was a blessing. We are still waiting on master bathroom counter-tops and a shower door. We wanted to stat the new year in our new home, & open another chapter in our book.

Now I am just trying to get husband set up for local doctors and get the referral process going, which I thought I had started back the early part of December, however, when I called the local oncologist referral line, they could not find anything that had been sent...so back to "square one". Already have an urologist appointment and those partial medical records have been sent. I will continue be a persistent wife and call, call & call.

Ted has been, so-so after this last treatment (01/02/2014), he just looks to tired and worn out so much of the time, I tingle when he smiles and feel happy inside that he still can smile. Pain levels are somewhat easier, but bending down & trying to get back up is big effort on his part. His appetite varies a lot, he is hungry, but doesn't eat as much as he would have a few months ago, so I keep a lot of his favorite foods around. He loves certain kinds candy & I know sugar isn't good for the cancer, but why deprive him of anything that will satisfy him for a little while.

I have read the last several postings from many of you and I feel that this journey has been "trying" on so many of us, but we strive to "carry on" in spite of everything and I agree with LuAn, I stop what I am doing more often now and sit and talk if Ted is talkative, I know those moments are to be cherished. I understand that this forum may bring back memories and feelings that are to be remembered but the hurt comes back a well, and that emotion needs to subside as the days, weeks & months slowly go by, so I know we will not hear from some of you in the future, but know this, we "feel" with you and wish you all peace for this coming year. We can never forget that "guy", because he was a part of our life, our livelihood for so long....

We have a bone scan on the 21st and will get the results on the 23rd, but do not know what treatment plans will be prescribed with our current oncologist verses what the local oncologist would deem his protocol. Will cross that bridge in a few weeks......

Best wishes to all for this new year.....I've got to unpack another couple of boxes before bedtime.....
Posted 1/8/2014 7:43 AM (GMT 0)
Thanks to all for your posts here..... the feeling I have personally in this specific thread is one of "been there, doing that".  There is however one other thing that I would like to add, and its this.

Since my husband has been going through such a dreadful time over the past number of years, I have noticed that quite a number of our friends have made comments like "isn't it great that YOU are so healthy and so well and can keep going".  Some of this is true, but the real truth is in the fact that I don't feel I have the right to experience "off" days, or to feel ill, or have a headache - a real one - or complain about any ailment.  Everything else seems so trivial compared to cancer, that it does not seem valid.  So, I tend to just take some pain killers or whatever, and just keep going and smiling.

I know its a ridiculous concept and thought, but I cant help how I feel. 

cheers for now...

Posted 1/8/2014 10:22 AM (GMT 0)
Well, it's 3:00 am, and I happened to check my email to see these new posts. Up assisting my fellow who is in pain and with nausea. He has been having to take more meds recently. Quality of life has been compromised, with some lethargy. He wanted to lessen the amount to see if that helped. It did, but with a price. He was awake enough and craving hash browns, to take me out for a lovely breakfast, but later in the day, and up now with a lot of pain.

I am beginning to see a theme among the wives and partners, with a kind of PTSD related to caregiving. In a disturbing way, I find that somewhat comforting in that I am not losing my mind. Finding the balance of knowing what I can and can not do to change the situation is a minute to minute thing. I am my guy's full time caregiver while working two jobs mostly from home. (Thankfully, being self-employed helps).

Thanks for giving me more food for thought on this journey.

Susan
Posted 1/9/2014 1:17 AM (GMT 0)
Been away from HW for a few days, needed a rest from PC, at least as much as you can when the guy you love is struggling with this brutal cancer. His last bloodwork was amazingly good considering what his body is doing to itself. It is helpful to know that others are out here who are living the same drama and some who have lost their loves but still come to share their thoughts and help us on our roads. I am amazed at how normal our PC Caregivers can seem, moving, working, travelling, whatever, but with an undercurrent of having to be 24/7 caregiver. I don't think I ever understood what that word meant. The definition grows longer every day. With my parents, there were other siblings and aunts to help out. Now, one of my husband's children is separated by distance and one by choice.

Should I say there is light at the end of the tunnel? That feels so awkward, almost flippant, but not intended that way. Yesterday's meeting with oncol was very helpful, especially for me. He and Mark agreed to stop the Xtandi (PSA up to 880), that it was not contributing anything to his QOL or length. He confirmed that the enlarged lymph nodes are late stage sites, rare for PC, for cancer. He agreed that the Xofigo, radium 223, injections would be good to continue as long as his CBC is OK and SE's are minimal, because it helps to reduce bone pain as it heals the bone mets. He spoke to Mark about end of the line for current treatments and the next step will be the call to Hospice. While Mark seemed reluctant, his oncol told him that while he may be doing fine it's because of the Missus and the Missus may need Hospice help in the near future. He left the door open, saying to call before his Feb appointment if needed. He expects that Mark will slowly succumb, becoming more tired, lethargic, less and less appetite, hopefully not too much pain with bone mets under control and morphine for kidney pain and oxy for rest of it.

I've spoken about how sad I am too see him so sick, how I will do whatever I can but don't want him to try to beat the clock. I've asked him to "let go and let God" and that I will be with him to his last breath. How hard that is! While we reminisce a lot, he doesn't express much about how he feels now or what is important to him over the next few weeks/months. I'll quote Susan's words "Finding the balance of knowing what I can and can not do to change the situation is a minute to minute thing."

I'll close by asking each of you to take care of yourself, it's so important to have a time out, a few moments to meditate on a favorite scene, or to feel the warmth of a mental blanket wrapped around you, to call a favorite friend or family member and chat about everything except cancer, check out holiday friends and family pix on facebook, anything that puts you in a different place for a few minutes.

Holding your hand as I know you are holding mine.....
Pat
Posted 1/9/2014 10:44 AM (GMT 0)
Holding you close, Pat. These are hard precious days for you and Mark.
Thinking of Hospice now is wise and your doctor's words even wiser. I wish someone had said them to me earlier.
One thing for you to check: when you enter Hospice double check about any of the medications he is on. I imagine if they are solely for pain that may be ok but any "treatment" drugs will be discontinued.
When you do sign up for Hospice there is a booklet they have that is immensely helpful. I wish I had had it earlier but it was so helpful.
My thoughts and prayers are with you. Your unique journey continues.
Posted 1/9/2014 12:58 PM (GMT 0)
It would be helpful to have a separate Xtandi thread.
Posted 1/9/2014 2:46 PM (GMT 0)
Pat. What can I say? What can anyone say?

My heart bleeds for you. Life is not eternal, we all know that but I don't think anyone ever thinks they will be talking about hospice with their love. May you both find some peace


Nancy
Posted 1/9/2014 5:39 PM (GMT 0)
Pat,

Sitting here reading the past few threads, my heart goes out to you and the others that's on and has been through this journey. Everyday, I pray for everyone here on HW and always reading on here to better understand about my PCa as I can to be better informed of my DX and treatments.

My wife of 66, is still working full time (mostly for our insurance) and I do work part time at a local funeral home. Here at home, I do all the laundry, cook about 50% (do bring home carryout once or twice a week and we go out a couple times a week) and try to do as much as I can around the house (summer months, I take care of the yard and takes about 1.5 hours). I know how important it is to be a caregiver as I was one the first half of 2012 for an 90 year old man (I LEARNED A LOT about in that capacity)!

I do go to all my dr. appts and treatments by myself as I guess I'm trying to keep my wife as far away from my "C" as I can (if and when the time comes for her to be home full time)!! Praying for my miracle, but realize it's all in God's hands. In the late 70's, both of her parents (mother 50 and father 57, died from cancer). Sept. 26th, we'll be married 44 years and during that time, I've had 3 major and 2 minor surgeries and numerous nerve blocks. In the past, she's the best caregiver a man could ask for. We have one daughter that lives 40 minutes south that has a husband and four kids (full time job), seems we help her and her family....A LOT!!

Said all that to say this: HW family is ALWAYS ON MY MIND!! Yes, we're in this together and without each other, it would be very hard.

My thoughts and prayers are with you all!

Dave in Bartlett, TN
Posted 1/10/2014 3:56 AM (GMT 0)
Pat, I am thinking of you and Mark often even if not posting here. Praying for all the strength and love you share with Mark to share with yourself. It is a minute by minute scenario towards the end, doing the best you can. Hospice of course doesn't allow Mark to continue treatment, but that doesn't mean he won't have a better quality of life. What they do give him medically just might give better QOL and what they provide you is clearly comforting advice, home assistance, and any and all medical supply's and equipment to make what time Mark has left much easier. Don't let Mark be forced into a hospital bed, if he doesn't want it, it's yours and his decision, unless he is unresponsive, then it's yours and no one else's. Jim did not want that, and I am so glad he never left my side in our bed. They can provide him a bed rail to assist in moving and turning and not falling out of bed. That gave me great comfort. Ask and you shall receive, allow them to help you also around the house and errands, so you have more time with Mark, it's important. Keeping you in my prayers that Marks journey is as painless as Jim's was, and that you find the strength and courage, and you know you have it, to endure. Everyone here on HW is right beside you for virtual hugs and strength. Know we care now and after. LuAn
Posted 1/10/2014 11:29 AM (GMT 0)
And I just want to add that Hospice allows you to be the wife and only that. They do the caregiving. It is a huge difference.
Posted 1/10/2014 8:41 PM (GMT 0)
Pat,

Thinking of you always during this time.

Jitters, nhwife, and all,

Such wonderful and insightful posts that bring to heart your experiences. For me, and a lot of other caregivers this thread helps so much. The posts regarding "hospice" makes me see how vital this component is not only for the patient, but the caregiver as well.

Thanks,
Cathy
Posted 1/10/2014 8:44 PM (GMT 0)
I really need some advice from you ladies. My father was d in Nov. Stage 4 mets in lymp & bones from the neck down. Gleason 8 started Lupron/Casodex 11-19 then renal failure from septic and infusion of zometa. We go to dialysis. He always drove us, then we hit black ice and had an accident 12-28. He was so worried about me and I was just worried about him. I suffered a spinal fraction and he had a brain bleed, but no broken bones which is amazing! Just so much in 2 months. Now were home and well, he's coming out of renal failure, yet its a battle keeping his spirits up. I believe he is good now as mentally good one could be. His PSA was over 700 now 50 as of 2 weeks ago. I live and breathe Cancer, Its all I can think about!! I just want him well! His strength is down so I suggested we exercise from the Lupron. I truly believe we have years. I feel like if I read enough, ask enough, I can fix it. I'm so clingy, he doesn't seem bothered by this. I constantly ask how he feels more so for the caratine levels/ kidneys. I constantly want him with me. Is this normal at first? I drive by his work and I just breakdown .I never cry in front of him unless he choses to discuss the what ifs. He was sick last night and told me I needed to brace myself. Does he feel this way because of all the changes? I don't know what to expect I just have this overwhelming feeling to keep him protected. This is the hardest thing I have ever faced in life, I ask God everyday to give me the right words when talking with him and his doctors. I'm in a panic for remission, and no I don't tell him any of this. Everything I say to him is positive and I am positive, I am just so scared of the unknown.
Posted 1/10/2014 10:24 PM (GMT 0)
Hi Dotson,

Well, I don't know if the clinginess is normal, but I certainly am experiencing that. I am always asking how my man is doing, which at times gets on his nerves, and at other times, he is the clingy one. I think it is about fear, and for me a little bit of co-dependency. Also, in our case he is extremely forgetful about leaving something on the stove, so I am afraid to leave him alone for any period of time. So I find myself not sleeping a lot, and making sure he hasn't burned the house down. I know he feels like I am babying him, but is beginning to realize that this is not good.

It's all very complicated, and tiring.

Take care, Susan
Posted 1/10/2014 11:48 PM (GMT 0)
So much going on with so many of you! Wow. We are hanging in there and doing so well compared to so many. My husband continues on his Xtandi and monthly Lupron shots. His PSA for Nov. was .21 and we won't get the December results for a couple more weeks when he has his next appointment. He is experiencing the following side effects which are exactly what the side effects from the Xtandi website describe. He is having a hard time getting to sleep and staying asleep, his bones, muscles, and joints ache to the point he is taking something for pain occasionally. He has gotten weak and has lost the motivation to go to the gym. He now has a bad stomach ache after taking the medication and also complains of a lot of gas. When we were talking today he said he would like to stop both medications for a month or so and see if he could feel some what better. He is still active and gets out in the yard when he can. His appetite is good and he looks real good. He has been taking the Xtandi since November 2012, so guess his run is going well.
I think of all of you often and you are in my prayers.
Posted 1/11/2014 4:08 PM (GMT 0)
Hello Dotson ........

   I'm not exactly a caregiver ... unless you consider I am the only caregiver for myself. I am on this long journey as well .... and you said a few things I would like to comment on.

   My return of PC in 2010 also included it spreading into parts of my liver and ribcage and lymph node .... and it blocked my kidneys - perhaps similar to your Dad's.

   While I have been in the hospital three times with kidney failure in the past three years, I have been lucky enough to have dialysis only three times - the first time I was in the hospital - three years ago this month.

   You mentioned he is coming out of renal failure! Just for your info - I had two nefrostomy tubes added for a few months (instead of dealing with dialysis). They were removed for awhile but my kidneys still needed help - so 18+ months ago, an internal stent was placed for my left kidney and a nefrostomy tube for my right kidney.

   They are much less time-demanding and less invasive (mentally) I think than dialysis.

   I mention this only if ........ your Dad can be taken off of dialysis but still needs help for his kidneys. It may be worth talking to the doctor about it.

   I was on Xtandi for just two months. It did not work for me - but it obviously is or has been working well for your Dad. A PSA of 700 coming down to 50 ..... that's fabulous!

   I have been on Jevtana since September, and it has been working well for me so far. I do have a detailed thread which could be of interest to anyone who is considering or about to start Jevtana. It is called "My Journey with Jevtana"!

   Wishing you and your Dad the very best. If they are possible, the stent and/or the nefrostomy tube are both low maintenance - and should be more pleasant than two or three dialysis trips a week.

Peace and wellness

Rob & Gizmo

 

Posted 1/11/2014 4:38 PM (GMT 0)
Dear Dotson, I didn't mean to jump over your question, sorry. My husband has never experienced renal failure so I can't offer anything there, but I believe your feelings are what most people go through when they get news of something that is going to rock their future. My husband and I have been on this journey for almost 13 years now and while I will say that hearing he had cancer was not words I wish on anyone, those words were life changing for me. It suddenly helped me realize the truly important things in life. Many people are not given "prior notice" to things that are going to happen to them and don't get the chance to really love on those around them. This is all so new for you, you and your father sound very close, and that is a wonderful thing. To me when you love someone, you have the feelings you are experiencing. Some people run and others cling more tightly. Hang in there, know that the people here are a great support and will try to help you!
You are in my prayers!
Posted 1/14/2014 3:50 AM (GMT 0)
I am finding myself on the site more the last weeks. I am feeling some frustration with the what seems a long time with getting back to the Doctor about a surgical consult for Bob's hip. He is being evaluated for palliative radiation and Zytiga. He has been having a rough time of it, and thus so am I. I have also been in back pain myself, so we are in great shape here. Keep up the prayers, please.
Posted 1/14/2014 4:56 PM (GMT 0)
Susan, I too have been back more. For me it's bitter sweet. I read others doing so well on their meds, and it makes me ask WHY didn't they work for Jim. Absolutely nothing, well he did get 11 chemo treatments 3 week part, but the medications, Xtandi Zytiga, worked 6 weeks, and then PSA was back to over 1000. But then when he was diagnoised, they said he was a rare one...it was what it was and we were given an extra 2 1/2 years, would have loved the 5 they predicted but not at the quality it was. I was just amazed that we had so many options that were not put there 5 years ago, even 1 year ago.
Working on our 2012 taxes, going through the medical part, just reminds me of the ups and downs, the hospital visits when we almost lost him to sepsis, it's been hard reliving it. I finally just put the paperwork aside and went to the movie..today I start again.
Our family lost another, an 11 month beautiful baby while she waited for a heart transplant. 5 months longer than they told us, a difficult 11 months on her and her parents, heck on all of us, but we celebrate her and all the love she shared with everyone she touched this Sunday. We will all continue to ask why for months and years to come and some will know the answer sooner than others.
Well back to the tax table covered in receipts...praying each of you are having more better days than bad, be it less pain and nausea, more strength and peace, and less tears of sadness and more of joy in life.
Jitters. LuAn
Posted 1/14/2014 5:14 PM (GMT 0)
I read this thread quite often but seldom post here because it is often hard for me to find things to say that haven't already been said better. But I am here.

Sometimes I can't understand how you do what you do but I admire the way you support one another and, from time to time I drop by to suggest that you say hello to a new member.

PetraF seems to be struggling with her husband and may be feeling all alone. It might help her if you guys could say hello.

Here's her latest thread: www.healingwell.com/community/default.aspx?f=35&m=2962929
Posted 1/14/2014 10:20 PM (GMT 0)
Hello All,

So thankful for everyone here. You all are so very kind and thoughtful to share of yourself.

I find strength from everyone here. We're all taking it one day at a time.

I'm not questing God as why I have PCA, but only trusting in him to bring me through all this!!

Dave in Bartlett, TN
Posted 1/16/2014 9:08 PM (GMT 0)
Hi, dotson,
You asked is this normal. You are so very normal. We are afraid, we may cling, we may hover, we worry, we take on our partner, spouse or hubby's PC like it is our own battle! We want to FIX it, but that is not in our power. Your dad is talking what ifs and be there to listen to him. It is difficult, but easier than if he closed the door on you. Be prepared... That sounds so ominous. Could he be asking for you to understand that life sometimes is not what we want or expect?
We are scared of the unknown and our friends on HW help shoulder some of that fear. Your dad is lucky to have your support and is grateful for it.

LuAn, Jitters
Sad to hear about another loss in your life. As you, I am so thankful especially for the extra year from xtandi. That extra time has been special with new memories added to our life. I agree--no hospital bed as long as he is safe. Thank you for sharing that months ago as you wrote about your last days together. And thank you for continuing to support our journeys.

Radsgrrl and Smo1, walking with you and pray for best outcomes...sometimes less is better. I was hesitant to take more active role speaking to care providers but know now that it was the right thing for us. Some choices are hard, like stopping meds to see if he feels better or adding treatment that may make him feel worse.

Tednsal, have not seen you for a while and prayers continue for both of you.

Reaching out to each of you with warm hugs.

Update on Mark, not much change after stopping xtandi. Still losing weight, increase in kidney pain, no longer enjoys reading his favorite books. Plans to get next xofigo injection next Friday. My energizer bunny keeps going....

Pat
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