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Posted 9/15/2018 9:18 PM (GMT 0)
I have posted a little lately on the SRT/ADT thread and found all of you a few months ago when my husband was diagnosed. I/we are still fairly new here and to PCa. He got through surgery on July 26 and is coping with the incontinence pretty well (and improving gradually) and back to work. Steve talks about feeling stressed and worried some but not that much. This week and today, though, I feel like I'm coming undone.

I'm irritable, distracted, worried and just scared about the whole process. He had his first Firmagon shots Thursday and his urologist plans to do Lupron for 2 years as well as radiation. We go for the radiation consult next week...

I am a therapist (I work in a group home with women who are persistently mentally ill) but am TOTALLY feeling like a patient this week! I have several very good friends, other therapists, who are awesome but they don't understand about this stuff. How do you guys and your wives and partners get through this? I am fine many days but then hit the wall and my head starts to spin.
shocked

I really appreciate the intelligence, thoughtfulness and kindness of this group--thank you for letting me vent and ask for help smile

Charlene
*************************
Husband's info:
Diagnosis of pnbx 5-15-18: Vol. 49.4cc: PSA 18.1
Diagnosis of Preoperative examination
Diagnosis of Prostate carcinoma - cT2aN0M0 Gleason 5+4 PSA 18.1, NCCN very high risk 5/15/18
Diagnosis of Prostate nodule
Diagnosis of PSA, elevated

His pathology was as follows:
prostate carcinoma stage IVA PT2N1MXR1
Gleason 4+5, 40%, TERT 3, +Marg L and R Apex, 1 of 9 + nodes (anterior prostate fat)
PSA 9/5 .05
Firmagon 9/13
Posted 9/15/2018 10:14 PM (GMT 0)
Kitty hawk, I feel weird giving advice on this to a therapist. But I’ll try.

There’s a lot of “unknowns” and uncertainty in you and your husbands head right now. It’s a whole new world, so of course this will lead to anxiety. As you know uncertainty always breeds NXIETY.

THE GOOD NEWS IS THE Firmagon is doing its job, and PSA has dropped to a negligible amount. He’s not in immediate danger. And we’ve had guys here diagnosed way more advanced (like PSA 3200, bone mets all over the place) and still kick9ng 10-12 years ago,

Try to focus on the positives like the above. And know that his disease can be managed for many years, even decades.
Posted 9/15/2018 10:34 PM (GMT 0)
I was having difficulty coping with my recurring PCa last year and started seeing a therapist. But the one thing that really changed my outlook on this was a comment my oncologist made. She said that recurrent PCa was like a chronic ailment, I.e. diabetes, these days. That lifted my spirits immensely.
Posted 9/15/2018 11:55 PM (GMT 0)
Pratoman--what you said is really helpful smile And my therapy hat is definitely NOT on these days when it comes to my own stuff around my hubby's health. I have tended to be negative lately so that's good advice to focus on the positive and what is working.

Turner 2--thanks for sharing that! I hadn't thought of it that way--as a chronic ailment smile I appreciate it!
Kitty
Posted 9/16/2018 12:11 AM (GMT 0)
Kitty.... don't beat yourself up for having a bad day that's part of the new normal with this darn disease my wife will take a me day last weekend while I took the grandson to valley fair amusement park she just stayed in the motel room for 2 days read books, napped went out to have meals but just did nothing, nice hot bath and just relaxed I would encourage you to do something like that you know like go for a long walk, hike, camp, motel just something where you don't have to think about cancer for a couple of days and just reenergize for the upcoming Radiation and Lupron SE's that your husband might experience. This is something that we talked about on the ADT and SRT thread is sometimes we forget to thank our wives for all the hard work, love and support they give us most of the times behind the scenes.

Larry

Don't worry pays to be a little crazy!! smilewinkgrin
Posted 9/16/2018 1:54 AM (GMT 0)
One thing that seems to help those who participate is one of our GFMPH gatherings such as the one coming up in slightly less than two weeks in Rochester NY. Prostate cancer is a very isolating disease, it causes men distress in areas of their lives they simply never talk about, often feeling like they can't talk about their worries. But if they can spend some social time with other men who've had the same experiences the feeling of being unable to speak mostly goes away. All of a sudden they realize two things, first that they can talk about their problems, and second that they don't need to talk about them since the men they're with already know. So they talk about cars, and distillery tours in Scotland, and why the fire is so smoky, and support each other simply by proving that guys with bum prostates (or no prostates) can still get together and have a good time.

And, of course, many men bring their wives... Or more accurately, the first time a couple attends often it is the woman who drags the husband, tired of him moping around the house.

GFMPH Fall 2018 - New York, Sept 27, 28, 29, 30 Calling new menbers of the HW club

Attendance is down slightly from previous gatherings so there's room.
Posted 9/16/2018 11:34 AM (GMT 0)
You are doing exactly what you should be doing, sharing. This cancer journey is hard on everyone. My poor wife lost her first husband to stomach cancer and now she has to deal with the cancer journey again, I cannot imagine how hard it is for her. I find writing and journaling to be a great tool. Some time ago I wrote the below, maybe it will help you. Peace, Denis

Cancer is a physical illness and does not have to be a mental or spiritual illness. I have only been dealing with PC for 1 year and at times I let it darken my spirit and my thinking. I have been selfish and inconsiderate to those around me. I have allowed the disease to take away some of todays because I was worried about tomorrows.

There are days when I read others posts and allow the darkness to creep back in. I feel the pain in love ones, the fear of those with the disease and I get it! We all deal with this disease in different ways and I am clear that what works best for most of us is sharing our journey, connecting with others and allowing our fears and pain to be out in the open. I also believe and am trying to practice not allowing this disease to take today from me and my friends and family.

Cancer can be lonely and scary! I get trapped some days thinking about what might happen and it is usually a negative thought. Why don’t we project positive outcomes, cures? Because of fear! I stumble across a great song lately called “Fear is a liar!” That title is what I need to lean on.
I have no clue what the future brings, never have and never will. However, when I look back at all the life hurdles I have faced, the outcomes were always way more positive than I projected. We have the power to be in today, in this moment and relish the gifts in front of us right now! I get some of us are sick, and the treatments are hard, and I wish peace for each of you today.

Let’s be a force of good, of helping those around us live with dignity and gratitude today. We can look for goodness each moment and try to be there for others. Sure, there will be days of anxiety, sickness, pain, and worry. Let’s try to shrink those to moments and look for the gifts not the trials.

Today I was experiencing some SEs and feeling sorry for myself. Then we played golf with my one son and later in the evening we had dinner with my 5 kids and 5 grandkids. Got to put the little ones on a merry go round, bought them ice cream and I just loved them. My kids were laughing and kidding each other, none of them was thinking about my cancer. I had the chance to see the awesome life I have with cancer. I am grateful for my life today and cancer is part of that I today I will not let it take my spirit!

Together we can be strong and when needed lean on each other. Together we can learn together and help each other navigate this cancer journey. Together we can be a beacon of hope for those that come after us and a light of peace to those at the end stages.

So today let us join to say yes, we have cancer and we will not let it take our spirit, our peace of mind, and our ability to be the best men we can be for those around us! We got this it does not have us!!!!!
Posted 9/16/2018 3:41 PM (GMT 0)
+10 subdenis smile
Posted 9/16/2018 4:55 PM (GMT 0)
Therapist, heal thyself smilewinkgrin

Seriously Charlene, pick up the book, 'Natural Causes", by Barbara Ehrenreich, who interestingly hold a Ph.D. in cellular immunology. In the book, she makes the case for less focus on doctors and medicine, and more effort on just enjoying life, not worrying, and living fully.

It's my considered observation, we could use more of that to assuage some of the self absorbed melancholy cancer can bring on. Good luck to both of you!
Posted 9/16/2018 7:45 PM (GMT 0)
Thank you all for the support! I think I needed to vent and get some perspective on things. Thank you for sharing those comments, Dennis. Beautifully written and Incredibly important! My husband really does seem fine. He's moving through it and doing his usual stuff. We're never really in control, but sometimes I have the illusion that I am, LOL no Illusions now tho, after his surgery, his surgeon said he's a glass-half-full kind of guy and felt good about the surgery. I am most of the time but do let worry get to me sometimes. I'm going to focus on the positive and the great things that happen every day and remember to be mindful and grateful. I've had 21 years with an amazing guy so far and choose to believe there will be many many more. Thank you again. You are such an amazing group of people.
I hope we get.to Rochester next year!
Charlene
Posted 9/17/2018 12:30 PM (GMT 0)
Kittytalk371 - It will get better - at diagnosis most partners go through the typical stages of grief. It's a new normal that we have to adjust to as our partners go through this massive change between surgery, drugs and the cancer itself. And their changes will and do affect us. If you are on Facebook, there are some support groups. I'm in one for women whose partners are stage IV and it helps quite a bit as it's a safe place to whine on occasion and seek great advice as things change.

I think we can message in this group (Moderators please correct if I'm wrong) so feel free to contact me if you have any questions or just need to talk.
Posted 9/17/2018 1:56 PM (GMT 0)
I write. Things, essays, poems.

Then I go to the workshop and make large pieces of wood into small pieces of wood.

Andrew
Posted 9/17/2018 1:58 PM (GMT 0)
Union98,

OK, since you asked: you're wrong. Nobody can message you. But you can fix it.

If you look near the top of the screen you'll find the words "My Profile." If you click that and then find and click "Edit Profile" if will bring you to a page that lets you set whether or not your email address is visible to other members. Yours is set to "Hide my E-Mail address" right now. If you select "Show my E-Mail address" then other people can message you.

if you look on the left side of a post or comment there is an icon that looks like an envelope. If it is in color (like mine) then you can click it to send an email to the member. If it is black and white (like yours) the member has chosen not to show other members the address.
Posted 9/17/2018 5:33 PM (GMT 0)
kittytalk371,

For my wife and I, we already had a system in place as she went through breast cancer (major surgery, 18 weeks chemo, a year of immunotherapy) just two years prior to my diagnosis. During that time we read lots of books and got a handle on weathering through the bad days.

Now I do have to remind myself to talk about what I am feeling regarding this new way of life, and it is a new way of life.

One thing that works really well for us is that we are both runners and share that activity several times per week. We do races together and she is taking great delight in beating me in the last few as I regain my legs following the surgery. Last weekend to drove to Bismarck, ND and made a long weekend of it with her in the half-marathon and me in the 10K. The togetherness tied to a physical activity with the social aspects of running has been a big help.
Posted 9/17/2018 7:31 PM (GMT 0)
Hi Charlene,
I'm also the wife of a G9 guy. I'm 45, he's 58 (we're also married 21 years). I've struggled mightily at times. I don't have solutions for you because I haven't discovered them for myself but I usually find that talking about it to anyone who doesn't get the nuances of prostate cancer makes me feel worse...so I try to talk to my husband and keep communication open as best I can and I come here...and that's been pretty much the extent of it for me.

Hormone Therapy for example...people understand chemo and radiation and feeling ill...but it's hard to explain the toll that hormone therapy can take on a person and relationship if they haven't either been there or at least have an understanding of PCa and what hormone therapy actually means.

Keep talking here, all the best to you both.
Posted 9/17/2018 8:53 PM (GMT 0)

PeterDisAbelard. said...
Union98,

OK, since you asked: you're wrong. Nobody can message you. But you can fix it.

.

Thank you! I don't mind being wrong; it's how we learn. smile
Posted 9/18/2018 6:25 PM (GMT 0)

Hello!

Feeling stressed and overwhelmed, with a wide range of emotions right now?

We have put together a thread for you, from the collective experiences of our members here.

It's easy to find ... simply look for the SEARCH BOX at the top of your computer screen.

When you find the search box, simply type in this thread title, as follows:

LETTERS TO THE NEWLY DIAGNOSED.

Type that in, and the thread will appear.

I think you and your husband will find it helpful and meaningful.

Sent with my best,
CYCLONE ~ Iowa State University
Posted 9/19/2018 6:36 AM (GMT 0)
Thanks again, everyone. I appreciate the suggestions and will look at the letters you mentioned, Cyclone.
Today is his birthday and anniversary of our first date. I'm taking him to a nice restaurant in downtown Denver. We are also taking a long weekend in the mountains in early October. In many ways we are making more time together. Funny how life works!
Charlene
Posted 9/19/2018 11:47 PM (GMT 0)
SubDennis thanks for posting this.

I have described to my wife that my journey so far has been a roller coaster. I try to remain positive, but sometimes I have down moments. When I have one I try to remind myself there are those that are worse off than me. I saw on TV a 10 year old battling leukemia for instance. Or the young mother who gave birth a year ago who is battling breast cancer. These dark moments seem to creep in at night, during the day I;am busy enough not to think about it.

I think it may help over the next months to have these forums to have others to talk to that have gone through this. I just joined this forumn, I think I talked to you on another one awhile back. Its hard for people who havent been through it to understand the mental stress of not only having cancer, but dealing with the side effects of the treatment.

So Iam trying to enjoy each day to its fullest until my surgery, and after reading about those who have gone through it. remind myself there will be life afterward, and to enjoy that as well.
Posted 9/20/2018 1:11 AM (GMT 0)
Road Ranger I'm glad you found us but sorry that you have to be here because of this darn disease. I hope we can be a source of encouragement, offer some tidbits from our own experiences and be a sounding board when need be. Want to wish you the best in your treatment!

Larry
Posted 9/20/2018 2:24 AM (GMT 0)
RR - welcome to HW.

Please feel free to start a new thread to introduce yourself. Lots of the folks here would welcome you.
Posted 9/20/2018 2:55 AM (GMT 0)
Thanks,

I know 3 or 4 others in my small town who have gone through it in the last year or so, I have talked to them and its helped, but there are some questions too personal to ask them so I may be asking you all over the next few months.

Seeing how they are going about their lives helps me realise there is life after surgery
Posted 9/20/2018 3:04 AM (GMT 0)
Ask all the questions you want. We're here most days.
Posted 9/21/2018 11:14 AM (GMT 0)
Hi Charlene,
I have been dealing with this disease for over 12 years now. I barely remember what it was like prior to cancer. I met my wonderful wife Mandy 6 months prior to diagnosis. It was a wonderful 6 months. My prognosis was poor. A year or less is what they said. My PSA was over 3200 and I had metastasis in my bones lungs lymph nodes and brain. I thought we should break up. Not Mandy. We married a year after my diagnosis.
I think it is harder on her than it is on me. She would cry in her sleep. Sometimes she would fall apart at work. She was an OB nurse at the time. I guess that somehow we just learned to let go and let God as we understand him to be. We focused on the victories. We believed I would be okay and we learned to take one day at a time and let tomorrow worry about itself. I now this kind of sounds like a pat answer but it is true.
All any of us have is today and there is no promise of tomorrow. I can tell you with all honesty that this disease changed my life for the better in so many ways. I have this amazing appreciation for life now that I never had before. Together we chose not to waste a single moment. We stopped planning for tomorrow and started living for today. We started taking vacations that we always said we would take some day. We realized that I might die if this stupid disease but I could just as easily get hit by a bus or some stupid thing like that.
It has not been without challenges. I have been on hormones for 12 years. I have no Libido. Mandy often felt unloved and unwanted. Oral E.D. Medication Did nothing but give me a terrible headache. Apparently you have to want to have sex for those medications to work. We eventually found something that did work but Mandy found herself in the role of initiator so we struggled with that as well. We continued to work at it and it has started to pay off. I can’t say that we have a thriving love life but we do have one.
I was not a candidate for surgery. Your husband was so his doctors must believe he has a possibility of being cured. Even if he has a recurrence, it doesn’t mean he is going anywhere in the near future. My last PSA result was less than 0.01 I have no detectable metastasis. There have been several new treatment approved since my diagnosis and there are more coming down the pipe. There is much hope for you and your husband. It’s going to be okay. Life will change to a new normal. There will be challenges to overcome but it’s going to be okay. Hang in there.Todd
Posted 9/25/2018 12:26 AM (GMT 0)
Hi Todd--thank you for the thoughtful reply! You have both been through a lot and it's inspiring! Your wife sounds pretty amazing and you both went through a lot early in your relationship. I'm glad for both of you that you have figured out how to create intimacy...I'm wondering about that for us down the road but think we'll figure out something smile I just want him to feel as healthy as possible. His docs think a cure is possible with adt and Srt. For now, we're learning to live with this and it's getting better. Thank you so much for sharing your experience.
Charlene
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