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Posted 12/10/2014 5:21 PM (GMT 0)
This disease is a roller coaster, but mostly bad. It devastates the sufferer and his friends/family, who have to suffer in their own way.

I don't really no what to tell you, other than PC (or any other cancer) is unbelievably life-changing. It is nice to assimilate the "every day is a bones" concept into our psyches, but very few can really do this.

It's not you!! It's not him. It's this darn disease that never goes away. (Even when it does, we are never sure)

Mel
Posted 12/10/2014 5:21 PM (GMT 0)
I am so sorry to hear this. I've seen a similar transformation in several people, with cancer, AIDS, and other diseases, who have just come face to face with the knowledge that they don't have long to live. I think it is a very natural grieving process they have to go through, and everyone does it in their own way. Your support is helping him, although it may not seem that way. But you are powerless to fix it, and believe me, I know how frustrating that is.The people I've known who were grieving for their lives did eventually come to a different place of greater acceptance.

However, in the meantime, if you believe his grief is getting in the way of life-extending or quality-of-life extending interventions, it is possible to take control. We did this for my mother briefly - having her kept on the psych ward of a hospital until she regained the ability to make rational decisions. It is possible as well to get a court to appoint you as legal guardian.

Some people did eventually find their way to support groups or to psychotherapy. The Cancer Support Community of Atlanta may have free programs.
Posted 12/10/2014 5:45 PM (GMT 0)
Yes, a great idea. The dog would be dependant on your husband whilst you are out working. Something he is missing in his life right now.
Posted 12/10/2014 5:55 PM (GMT 0)
I like the dog idea. The only downside is that it will be hard to unwind if it doesn't work. On the other hand, if Kristi likes dogs...
Posted 12/10/2014 7:07 PM (GMT 0)
Tough situation. Eric gave excellent advice. Should I add that it is OK if you talked to his GP or oncologist about your concerns, and then he can clear it up with your hubby. It is usually another reality, regardless of what illness, especially a touchy subject as mental illness, when patients hear advice from a professional as opposed to a family member.

And I do not believe depression is self-hate. It is only a natural but maladaptive response of a body trying to deal with too much stress during an extended period of time, without good coping mechanisms in place.
Posted 12/10/2014 8:00 PM (GMT 0)
I think in cancer we grieve for our lost future, the diagnosis is commonly perceived as a death sentence, rightly or not. Some cancers will take people out sooner than others, as we know. But anyone hearing that diagnosis can't help but jump to a conclusion that we'll be gone much sooner than we'd planned on.

The reactions are those of grief and loss, the loss of all those years, all that time we thought we had with our soul mate. The loss of time with grandkids, seeing them graduate from schools and move on to their own lives. The loss of retirement, travels, sports, hobbies, recreation.

It's a loss of unimaginable degree. The caregiver can somewhat sympathize, and they're facing their own grief at losing the loved one. But they will carry on, perhaps meet another, and likely will experience many of those blessed future events.

The degree of grief over loss may also depend on the degree of loss. The younger one is, the more future one would have expected. That grief may easily translate to resentment, even subconsciously, that both parties may need to air out and face head on.

Good health is a crown that only the ill can see...

Jerry
Posted 12/10/2014 10:23 PM (GMT 0)
Kristy,
I just didn't realize how difficult your situation is. I'm so sorry you and Paul are having such a tough time of it at the moment. The dog idea sounds pretty good - could bring him out of himself. I know from dealing with the loss of 4 siblings and my mother (all since my husbands diagnosis) that when a loved one is in that frame of mind, things are said, actions are taken and feelings are hurt on both sides. You cannot always keep control of your reactions to being treated badly. You just can't. That is not realistic and probably not healthy. When you find yourself getting to that place, a walk, journaling or even a phone call might help you get through it and move on. You both have to be able to forgive each other and yourselves. We can speculate on what Paul may be feeling but I'm pretty sure you are the only one who deals with his actions as a result of what he's thinking. "As a man thinketh...". You know even on a good day there's that nagging pain in the heart that we're all too familiar with. Know that you are doing the best you can. Do not let it drag you down.
I'm here for you,
Susan
Posted 12/11/2014 12:54 AM (GMT 0)
Lisa I WISH we could get a dog.. I would have our kids bring mine down here- she is an old sheltie and the perfect lap dog, and not any trouble ever in all her 13 years. They could be decrepit together!! She has some life in her and would be so good for him. I have thought of this often... The kids stole her lol! BUT.... we rent... No dogs in the lease. I am tempted to break it but maybe the doc would certify he needs a companion pet and they can't discriminate then..... Something to consider... and bring up.

Beejane, Totally can relate on so many levels. We just moved here, no real close friends and its just us. He is private anyhow.... But yeah, we could chat for hours and be totally on the same wavelength.

I appreciate everyone's input. I wrote a long, honest email this morning to the nurse and she forwarded it to the team- doc, social worker, etc. She came alone as the SW is useless, and has actually caused me to scramble and more work and even dropped the ball on Paul's PT...Doc wasn't avail but is being kept abreast. New SW may be assigned.

Regardless, he is seeing a MD tomorrow to shrink (or grow) his head. I let him have my appointment as they needed it emergently. After assessment nurse said without me they would probably be admitting him for emergency eval. Its that bad.... He was brutally honest during this nurse visit and took nearly 2 hrs and so worth coming home for. Thank God I could do this today.

I feel his pain, it kills me... I understand some of the whys and hows although I will never truly be into his psyche, I do think beejane hits it on the head as do others. The detachment and pushing away... He admitted it was so he could die alone, and I won't suffer. He hates being seen like this, he hates that I hurt too, and hates what we know is coming. If he makes me hate him he thinks he spares me from the pain of losing him, or from seeing him this way. It would also allow him to wallow all by himself as long as he likes... I WON'T let that happen.

We think he has PTSD from that surgery. We will see what the psych says, but its bad and I get it. I am pretty mad at the oral surgeon.. they pulled a tricky dick... They just sent a letter like they verified benefits and said our deposit would be almost 3 Grand!!! DEPOSIT!! Nevermind this would be a covered benefit with a $50 copay for outpatient surgery but they are not in the network so its no coverage, cash pay!! <insert cuss word here>... Paul saw that and got upset again... I had to explain that no, they are just NOT in the network and lo and behold there is one right up the street that is... and tomorrow referral will be in place, and I will be calling for a consult there. Hoping to do it right after Christmas as the kids will be here to help for a couple days, and then we can start to utilize some of the dental benefits we have to get the other work done, maybe even some just before the surgery and eat up this years $1200 and start fresh with another 1200 in January... I will figure this out!!

I am committed to getting him in a good place fast and keeping him there. He admitted to a lot of pain including bone pain, the pain management is changing, steroids may be added after dental work.... Lots of changes in meds coming very very soon.

Some meds discussed- possible marinol, steroids, Ritalin or Adderall, less benzos, Morphine long acting and immediate release as needed.... I wish medical weed was available or his buddy would come down here and steamroll him! Waiting for apt tomorrow to see what psych doc says and meeting with hospice doc next week. In meantime his PCP will help handle things at the office.

Phew... sorry for the novel! And thank you. From my heart.... I can feel the emotion and raw honesty behind all your posts... This touches us all in so many ways, whether we want to or not.... and it changes us in such unexpected ways..... I hope this thread is helpful to others. Thank you again!
Posted 12/11/2014 3:10 AM (GMT 0)
Kuku,

Depression is a prick of a thing. Right now he needs empathy and understanding. "Loosing" ones prostate is not a trivial matter; its at the centre of our gender -- who we are. And, the loss may cause deep depressive symptoms - I was there!

Support groups help; there are those specifically geared towards depression. For example here in OZ we have Beyond blue www.beyondblue.org.au/ and others. Our local hospitals do have Crisis Assessment and Treatment (CAT) teams, who will do a phone assessment; and if its really bad they'll (Psychiatrist, psychologist, nurse, contact person) will do a HOME VISIT to help. Let the doctor make an assessment of his current medication regimen; some tablets do cause depressive symptoms. I trust you have similar mental health support systems where you are.

If possible, take him to see a psychologist/therapist that practices Cognitive behavioural Therapy (CBT), which has been proven to be just as effective if not more effective, depending on the severity of depression, than chemical interventions. Antidepressants do take some time before they kick in, so be patient.

This is an emergency, and as we are advised by the airline staff, in the case of emergency "put on your oxygen mask" FIRST, then help the other. May I suggest that you seek help URGENTLY to deal with your anxiety.

I trust that both of you'll find the right medical and professional help, soon!

Best wishes! (I shall keep you in my prayers, I'm particularly thinking of 1 Corinthians 10:13)

*
Posted 12/11/2014 12:38 PM (GMT 0)
This thread has made me feel sooooo sad and depressed. I am actually in tears for you two guys right now. I wish I wish I wish there was something I could say or do to make things better for you both. You have no idea how much I wish this right now sad

Warm love and prayers to you both from this side of the pond.
Posted 12/11/2014 12:58 PM (GMT 0)
I found out I had cancer just a couple months ago, and I've noticed some days/times of sadness as well so I can certainly understand it. I have very clear goals in my work, want to see my two boys have kids, and I'm saving for a family condo on the river in our Alabama hometown where I hope to live half-time in about 10 years.

All of those dreams have been at the forefront of my mind the past few weeks.

The best example of living comes from my dad. He's survived six major cancer surgeries, chemotherapy and salvage radiation. Just last year he had an almost 2 in. tumor removed from his brained followed by 10 rounds of radiation to the head. Now he has two permanent bags for his bodily waste and fluids, can't walk because so much chemo has killed some cells in his hips and they won't replace the hip.

Yet, in the past 10 years he's seen two great-grand kids born, a granddaughter get her PhD, and son-in-law get promoted to full colonel, another grandson (my son) get a scholarship to a prestigious private college, about to see that one graduate plus my other son graduate high school, etc.

Just four months before they found his brain tumor (sixth cancer) he was named AARP Citizen of the Year for my hometown county w/ a population of 150k.

So, there's a lot to live for even with devastating side effects. I'm sorry I haven't talked more about them through the years with my dad, but I'm sure he's had them all.

I only say all this for you to keep reinforcing he surely does have great things in life to look forward to. The things might be different than what he had planned, but living is better than dying most all of the time to me.

I wish y'all well though.
Posted 12/11/2014 1:43 PM (GMT 0)
Dewayne, that was a terrific post. Thank you.

Kuk, I really hope you can get Bob to read Dewaynes comments. He may not be ready now, but at some point.
Posted 12/11/2014 3:04 PM (GMT 0)
Kristy,
If not for your openness we wouldn't have looked at this so in-depth. There is so much emotion when talking about depression, our own or of someone we love. Glad to see some progress being made on the help front.
So, by these responses you can see you're helping others who have been through or going through or may go through the same. It really is one day at a time all the time.
It's today.
Thinking of you both,
Susan
Posted 12/12/2014 12:18 AM (GMT 0)
Hi Everyone,

I missed page two of this until very late last night (after I had posted)... too late to reply.

Paul slept well and went to his apt, and had a good long nap today. No changes in meds yet, deferred to the palliative doc who will come to house next week. He will begin talk therapy soon, which I think will be very good for him..

My anxiety is under control. I do talk as you can see and don't tend to bottle up much. I did have today's apt for me, but Paul needed it much more, as mine was more to establish care and prepare for later when I really need things and maybe get my ADHD under control since I am devoid of massive amounts of caffeine that usually keep it in check due to the darned ulcer. Her office is right next to mine so no worries there. Plus I have an amazing team of medical professionals at work who are well aware of everything and keeping a good eye on me. So thankful for my coworkers! I can't say this enough....

This is a lot of emotion, and so deep, I had tears in my eyes too. Its important to talk about depression as it affects everyone pretty much. I don't know if I mentioned but I have worked psych nursing before in an institution, in the ER and also in a small county jail.... Maybe that is why I jumped on this so fast. I have seen everything you can imagine.

Paul's dental care plan may change, we will discuss this weekend. I think it will be much less than he thought. Purgatory- he may just need all his uppers out, maybe keep a few but thinking about it and talking with dentist I think that taking them all may be best and sounds like the dentist did too. Waiting on referral to be approved which I think will be tomorrow. Then we can figure out the surgery part. Makes sense to do when kids are here right after Christmas.

I appreciate the advice and info, and the prayers. You all are making me have to google now!!

Paul will have the next round of labs next Thurs or Friday...

Kids will be here in 10 days!! HOLY CRAP!!! House is a wreck, need to get cracking this weekend.
Posted 12/12/2014 3:17 PM (GMT 0)
Kuku,

The past couple months, I've been reading your threads. Each and every day since, I've called you and Paul's name to God during my daily devotion!

I too, battled with depression since I was DX Oct. 3, 2012. Just so happens that my wife and I sleep in different bedrooms (we're working on our 45 th. annv. and are more in love than the day we got married, but we both get better rest sleeping apart). Hopefully, when we move, we can get a KING size bad and sleep together. Back to my depression: I cried myself to sleep every night and when we both would talk about my condition, I would start crying!!! Sometimes on the way to church, I'd look out the window and see how marvelous the surroundings looked and would think about how I'd miss this world, my family, church and friends. Well, May of this year, I went to my pain management doctor and was prescribed CYMBALTA 60MG (Duloxetine HCL DR, helps with depression and lower back pain) twice a day along with morphine 15mg. Going on three years now, also been having pain in my right lower back, right thigh and right leg (severe Arthritis/Osteoarthritis). After a couple weeks, the depression got better and as of now, doing much, much better with the depression. For a few weeks, the pain was less, but, for a few months now, the pain is back. Yesterday, went to my third pain DR. and hopefully the long acting med I'm taking will work.

I see many wonderful people are here for you and willing to help you and Paul.

I've even thought about contacting you to see if my wife and I could do anything to help you both. I work part-time and my wife works full time. We could come up on a weekend and do anything you needed help with (we're both hard workers and take directions well)! Think about it!

Take care and you both are in my thoughts and prayers.

Dave in Bartlett, TN
Posted 12/13/2014 12:48 AM (GMT 0)
Dave you are so kind!! Come to visit, not to work!! OR should I say down since we are in ATL area?! Seriously, we have a nice comfy spare room and would love the company and distraction. Sometimes the house is an absolute disaster but I think you could look past all that....

I will ask the doc this week about adding Cymbalta, never thought about it. They want to up his antidepressant again, Buproprion.... to a pretty high dose. Not sure its really doing much good and this would be second increase....

Paul cooked an amazing pot roast last night, was so good... But sleeping a ton more. Not sure if because he needs it or if its a decline. I will see how he does this weekend... A bit worried... His color is a little off too.... He is sleeping like he did when he first got out of hospital from all that surgery hell.

This weekend meeting someone to borrow a car seat for the grandkid and forcing Paul to come out with us for coffee and tapas... will be good for him to get out. May "accidently" land in a hair salon to get his hair cut too.... He really needs it as he is looking like a Wildman.

Heading to bed early tonight too I think, he is already asleep beside me. A good rest will do us both good.
Posted 12/13/2014 3:03 AM (GMT 0)
Kristi,
I also continue to read your posts and want you to know my thoughts and prayers are with Paul and with you. Depression is such a difficult thing to deal with on both the patient and caregiver ends. Thank goodness that you have all that knowledge and training to deal with Paul's problems. Tim is also on Cymbalta and has been on it for many years to help with his fibromyalgia. He recently had his dose increased (from 30 to 40mgs). He struggles with increases of certain meds, but this has helped him a lot with pain and also mood. I hope that meds can be adjusted to help Paul. Tim is getting ready to change some of his treatments soon and I look to everyone on the forum for advice in battling this beast on both the patient and caregiver side. Take care of yourself, Kristi, and I hope despite of everything, you can enjoy your family being together for the holiday.
Posted 12/13/2014 4:57 PM (GMT 0)
kukukajoo, as cmetalman man said GFMPH was been a great help to many. I need to work on getting you and Paul to my house in April. Just what the Dr ordered.

Cajun Jeff
Posted 12/13/2014 10:06 PM (GMT 0)
Cajun Jeff- we are trying to get there.... I have 20 hrs of earned time now so barring no more illness for me or surprises for him I should have more by then. I do know his oral surgery may take a couple days, his Oncology consult....My genetic and thyroid testing (mum had dominant cancer gene-RET) There is always something sucking my time off! Planning for something would be so new to me but I hope to make a short road trip happen. Will keep eye out for flights as drive may be a little much for Paul but we will see... Time will tell... Wishing we had some land here and bigger home- I would want to host the next one!

Plus I REALLY want/need to get Paul to CA to visit family there and show me the sights and where he grew up.

Today was excellent- we met another couple for a nice quiet lunch and swapped car seats. Wasn't a busy place but food was decent. Paul seemed to enjoy himself. On the ride home we stopped at a couple shops on the way but he soon hit that brick wall that comes so fast and sudden for him. I wish we at least got a 10 minute warning bell on that....

Overall just a nice day, and he seemed in much better spirits and enjoyed the company and getting out.

I think the rest of the day is him watching football lounged on sofa and me just relaxing and online browsing.

Hoping everyone is doing okay this weekend.
Posted 12/13/2014 10:12 PM (GMT 0)
Question for you all- both men and their loved ones/caregivers....

What helps you stay positive and keeps you out of the depression zone and darkness? What helps you make every day the best?

(I know every day isn't going to be the best and we all have crap days.... But what makes them the best they can be?)

And... what are the things that I can be doing that will matter and make things a little better for him?
Posted 12/13/2014 10:37 PM (GMT 0)
I think that if you try to cheer him up, you will only increase the feeling that he is failing you and make it worse. I think the best thing a caregiver can do is validate the feelings of the patient. It's about acceptance. It's OK for someone to feel miserable when he is grieving for his life. I'd be letting him go through what he has to go through, and probably join him in a cry or two, staying with him rather than opposing him. If he gets to a place where he is ready to adopt a more positive attitude, he will do that on his own.
Posted 12/13/2014 11:08 PM (GMT 0)

kukukajoo said...
Question for you all- both men and their loved ones/caregivers....

What helps you stay positive and keeps you out of the depression zone and darkness? What helps you make every day the best?

(I know every day isn't going to be the best and we all have crap days.... But what makes them the best they can be?)

And... what are the things that I can be doing that will matter and make things a little better for him?

Both of you should visit a children's cancer center. That'll put most everything in perspective, in my opinion.

"I had the blues
Because I had no shoes.
Until on the street
I met a man with no feet."

Works for me when I get down.
Posted 12/14/2014 1:13 AM (GMT 0)
Depression is a very bad experience. Unless you've been there, you can only imagine, and your imagination can't really begin to grasp its depths.
I was in a very bad way when I was recovering from bilateral knee replacement. I already knew that I had PC, when during the recovery, I developed polymyalgia rheumatica. Long story short, that is a temporary form of Rheumatoid Arthritis. I can't even describe the pain involved with that one.
Bottom line is that depression is looking at the negative side of everything...something that is easy to do when you are having real physical problems. Only way to beat it is to look at the positive side of every thing. Easy to say...not so easy to do. I remember when I got out of bed each day and it took me 30 minutes to put on my shoes. My mantra was, ' I have two diseases that want to kill me, but I won't die today...not this ****ing day.' That may sound crude, but it got me through many many bad days, and today, my life is better than it has ever been. It is really true that the worst darkness is just before the dawn. Hang in there. And God bless.
Posted 12/15/2014 12:58 AM (GMT 0)
Paul seems to have had a better weekend. He has a dentist apt in the morning to begin some of the work and discuss the other options. Have the referral to oral surgeon in place now and going to pursue that this week.

Mondays for me are usually busy, but I hope to have time for a break to make some calls on it.

Also trying to get my records from NH which I need old films to compare to new ones.... Hoping if I can get this straight the kids can pick these up and hand carry here when they fly in a week. I need to have my thyroid US soon but without comparison to what the nodule looked like before, then would be a waste.

Always something... always sooo busy! House is still a wreck but made a great roast chicken dinner!
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