Caregivers

I have a couple of questions for the caregivers. How are you holding up? I know God is handling the worst of this but I'm having a little difficulty with my nerves. I've always been a strong person, this is not how I'm feeling this week. First of all, my husband doesn't look sick. When we go for his bone injection he is the healthest looking one there. Does anyone's husband look good? I seem to get nervous and am unable to sleep when we have an appointment to discuss test results, etc. Tomorrow we go to find out about his bone scan that was done last Friday. The past 2 days have been worse, I have been feeling extremely weak and lost my dinner while just sitting and talking with a friend. Has this ever happened to anyone else because this is not the first time. My husband has refused Chemo of any kind. So for the last few months he has not been on anything to slow the cancer. He goes from his chair to the table or the bathroom. He doesn't go outside, won't go out and sit on the deck. He's walks to my truck to go to the doctors and has to stand leaning on the seat to catch his breath (while on oxygen). I would appreciate if anyone can tell me am I normal? How you handle your stress. Hugs Barb

i'm struggling this week with my mother. And not only because for the fourth night in a row I wake up between 2-3 am as a result of jet lag, buzzing mosquitos and next door neighbors in hotel being loud, and then have a full day at hospital the next day. Buying melatonin tomorrow.

Here is what I'm finding out this week. I am totally powerless vis-a-vis cancer, diagnosis, side effects and treatment requirements. I'm at their mercy. All I can do is be pragmatic, practical, make all the arrangements for her care, and provide emotionally support.

My wife was a great caregiver with me. Not sure she really knows how much I appreciated it. My dad, mum and sister also really came through.

I cried a lot when I got cancer. I still get emotional about it when I try to understand it and put it in perspective.

I've stopped crying with my mother for some unknown reason. I think it's because I'm instinctively trying to be practical about everything (down to arranging her laundry). But I told her that if/when she should go, I know that side will go away and grief I am not sure I will now how to handle will set in.

She is crying a lot and tells me she needs to cry, she needs to have her hysterical fits to vent and let it out. She also tells me that she needs human interaction and affection more than anything else right now.

There is so much we learn about life and ourselves in situations like this and although ironically much of it is beautiful, a lot is frankly ugly and sad too.

You're normal for sure...

Barb,

Under your circumstances, all your feelings are normal and expected. You have a lot on your plate caring for your husband. My wife is a nurse, and even though she is around suffering people in pain all the time, she still has a hard time watching me deal with all my chronic pain and other cancer related stuff. What bothers her the most, is other than supporting and standing by me, she knows there is nothing she can do to directly help my situation.

Yes, vent or express yourself here anytime you have the need. Most of us do it during our troubled times, no one will think the less of you for doing so.

As you noted, there are lots of deeply, genuine, caring people here at HW PC. So you never, ever have to feel alone here. There are lots of women/wives that post here for their husbands/spouses, so you will be in good company.

Please keep us abreast of things with you and your husband, we care, and are here for you.

david in sc

Barb,

Here is a link to an recent article that I ran across in the NY Times that may be helpful.  All the best....Tim

http://well.blogs.nytimes.com/2013/05/27/facing-cancer-together/?ref=health

God Bless you all!

David you really have both sides and my heart goes out to you. Your Mom sounds like a super lady. She knows what she needs and says so. I sure could use a hysterical venting session with her. Hugs to you both.

Big Mac, Thank you for your support. All the feed back really helped me get through the night. Just hearing from everyone, their stories and support.

Purgatory I'm an EMT and have helped other people, many of which have kept in touch. Your own is surely much harder.

Canuck You are right about going thru stages of grief. I know keeping busy helps and I usually do. It's just that when we have an appointment where we are going to get results, it's like my body just stops. I don't function normal.

Tim Thank you for the article. Good to read.

Well, I am now getting ready for a busy day with the Doctors. It's going to be better news than expected. It's amazing how your mind always jumps to the worst of thoughts. And you are all the reason my thoughts are up. With your support I can get thru this and I promise to be there for all of you. God Bless Hugs Barb I'll be back

I can relate to all the feelings you are experiencing. My 49 yr old fiance was diagnosed and had da vinci surgery on March 19th.. his path came back more advanced then his biopsy. I too had the most sick feeling I have ever experienced followed by bouts of crying in front of him but mostly crying alone at night while in my bed. I have tried to be strong, maybe too strong, he thinks I am being cold and non compassionate. He went from a fitness instructor with SO much energy to a very depressed man in a moments notice. It absolutely kills me to see him so sad and depressed. I too am accepting it and you will too eventually. Be sure to take care of you.. I know that may sound cold and it was hard for me to believe that but when I started to feel burned out I knew it was time to do it.

Hi everyone, God how I Love you all. Your posts and support are so what I need. Just knowing all of you traveling down this same ulgy road take time to help others.

Friday was a very busy day. We went to our primary Doctor and he put me on meds to help me with the stress.
Then off to the Oncologist for our update. The news was not good. In addition to all he had It's now in both shoulders, both Kidneys, left hip and femur, 9 additional rib areas. The ongologist discussed him going thru a low dose chemo (texotere) which we go back on the 10th with his decision. He has refused all dicussion regarding chemo in the past and I feel he is not going to change his mind. But this time he let the doctor explain all options. This monday we go to the radiation Oncologist to discuss radiation to shrink the areas that have been causing him so much pain. The cancer in the L4 has gotten worse and the Doc is concerned with compression of the spine. Which would paralize him. Has anyone taken texotere, had side effects etc. I would appreciate hearing from you. I'll be back, my Honey is ready to shower. Hugs, Squeezes to all my awesome new friends. Barb

My hubby had 11 sessions of Taxotere. SE were manageable. It did do a number on the nerves in his feet, they are still numb.

Barb,

I think all of us caregivers go through the really down spurts, some worse than others. I think it has to be harder for you with your lack of input on his treatments. I have trouble before appointments and test results. The Taxotere is really doable, but se vary for everyone. I'm glad you got something to help you through it, but a support group could be helpful. We have one where I go with the caregivers and he goes with the cancer patients. When we first started this journey years ago, we tried a prostate cancer group, but we had the same experience as smo1, everyone was older and retired. We still had kids at home. We are getting "older" now .
Take care, it is a hard journey; harder when it's your mate and someone you care about......and life changing.

Mine lost his hair and again is losing it more slowly with lighter dose. On lighter dose because of his progression and how badly the Xtandi weakened him.

Barb,

My husband lost all of his hair about the third week after he started Taxotere.
When it grew back, it grew back extremely thick an curly at first. I've since tamed the curls through numerous haircuts. :)
I think Southern Comfort also ended up with more hair afterwards, if I recall correctly.

My husband's side effects were not really bad at all on Taxotere. He would get chemo on Friday and was back at work on Monday. He only had one day (usually the Sunday) where he would crash and nap. So he really only had one totally down day every three weeks. He continued working throughout the chemo.

Best of wishes to both of you.

Bjnemo, my husband had 8 treatments of taxotere, every three weeks on a Thursday, He started on July 26th and ended on December 20th, with one Neulasta injection after first chemo treatment. The day before the first chemo treatment he had a bone biopsy and had a "Power Port" inserted for the chemo treatments. He was prescribed Compazine 10 mg and Zofram 8 mg, these were for the possibility of nausea and vomiting SE, along with a low dose of Prednisone 5 mg.

I knew in advance of the possible side effects nausea & vomiting), so I started him on the Compazine the day before treatment, I gave this to him twice a day, and for the additional three days after treatment. (Later the doctor said that I over treated him, well, he was never nauseous or vomited, so I am glad that I "over treated him"). The possibility of constipation was a SE (not much) but we used MiraLAX, a cap full mixed with a tiny bit of orange juice did the trick for the constipation. No SE effects for about the first two to three treatments, then the fatigue set in and the dozing on and off, hair loss (not all, but it really got thin), appetite was marginal. So I fixed everything he liked, after awhile he had a metal taste and food didn't taste good, constantly having that metal after taste made eating not enjoyable. Chocolate masked it somewhat and lemons, he would eat lemons, the citrus made his mouth bleed once. No weight loss, to speak off, but fatigue was very much a part of his everyday life. He still gets "wore out" by the afternoon and is "shot" for the day. Goes to bed early 8:30 or earlier sometimes. He is on Xtandi now and has been since January, PSA is up a little up from April (12.71), his latest in May was 13.41.

If you have read any of my postings, we have been on this journey since 1999 and God has been good and providing us a path, not one we would have liked and the road is a little "bumpy" at times, but we are still able to travel it. We have had every type of treatment available, Lupron, Trelstar (both hormone type injections), casodex, radiation, Provenge, Xgeva (monthly bone strengthening injections ), chemo and now Xtandi. Other options are still coming down "the pipes" and treatments are even combining the Xtandi and Zytiga to combat the tumor growth.

Husbands CT scans have lesions in the lungs and kidneys, so that is where the cancer will go next, just don't know how long it will take it to get to those organs, but we are living each day by day. My main concern as a caregiver, is that I do not want to see him suffer, he has always been a strong and vibrate man and I will not let this disease take "him down" without a fight, I will not let him lose his dignity while suffering with this disease either. We will "stay the course", however and wherever it takes us.
We currently have our house up for sale and will be moving closer to one of our children, for support when the "road" gets a little tougher....and want to do that while he is still mobile enough to make decisions. He, as other folks said, on this thread, looks well, you wouldn't know he has Stage 4 Cancer, he looks great on outside (his bone scans light up almost his whole body), by the way, his hair is back and as someone else said, it's really curly on one side. When he went for a haircut, the first one in about six months, the barber said those were "chemo curls"....

Didn't mean to go on and on, but this is where I can vent and make myself also understand this disease and how to deal with it's progression on my husband's body and on our relationship. This is a good forum to help understand and to deal with this disease and to know what to expect next, because so many of us are going down these same paths together.

Canuck77: seed implants, why not surgery?
Tim: great article and it was in the NY Times....
smo1; we sound so much alike on our paths....
davidg: your PSA results are great! I realize you all had a hard time digesting the "C" word.
Passages: hope your doing better
Purgatory: keep "the faith"
Jitters99: how's it going with you and hubby? Still having a lot of visitation?
Good night all.....love and hugs to all....