Having trouble with depression

By WorriedGF
Posted August 12, 2008 at 3:07 pm

Spartyman, I don't know whether it helps you--but I hope it will--to hear that your posting is WONDERFUL news to me. You've gone 15 yrs from having to deal with this. That tells me that there's hope that my 54 yo boyfriend and I can have some semblance of a real life after his last BCG next week. He, too, is SO depressed--but won't consider medication. Please TRY to believe the people around you when they tell you they love you, will have your back and want to help. And it is NOT detracting from your manhood to accept those offers.

By Karego
Posted August 12, 2008 at 6:37 pm

I agree with WorriedGF. 15 yrs before recurrence is great news for those who are at the beginning of this BC journey. Most people aren't allowed that space of time before recurrence. I, myself, went straight to bladder removal (Indiana Pouch) from diagnosis in Jan '04. I am now almost 5 years post surgery cancer free. Lifelong testing will be our duty to keep this nasty cancer in check. Read up on all our fellow members for help and support. We are all learning from each other. You can be others inspiration too. Karego

By sarahlee
Posted August 13, 2008 at 7:34 am

spartyman, depression can strike anyone for any reason or no reason at all,doctors can help,excersice helps but theres good help out there and depression is a terrible state to be in,I hope you seek expert advice. good luck.

By spartyman
Posted August 13, 2008 at 8:32 am

Although I had an excellent urologist I wish he would have prepared me for this new life or even made couselling after the surgery a requirement. I was so busy preparing for the surgery that I had little time to realy dwell on all of the issues after the surgery. We may be in our 50's but the fire has never gone out of our marriage. I do not want to talk in metaphors here because it will do nobody any good if we can't be frank, especially me. I mourn our sex life and feel totally and absolutely robbed. My wife has been so wonderful and supportive and we love each other dearly BUT...... I guess this is a "man thing" but urologists need to step up and realize that a urostomy bag hanging from my stomach is the least of my concerns(although even that was a huge issue.) This affects all men's "manhood" issues and it must be openly and honestly discussed. At no time has he discussed this with me and NEVER even opens the door to that discussion on check-up appts. Even if I do he seems to brush it off. So that leaves me dealing with all of this on my own. And trust me, this is not something that my men friends even want to think about let alone talk about. Now I finally realize how some women must feel that have mastecomies. An important part of them is gone as well as what they consider their "femininity."

I am ranting here and probably not making much sense and should just be thankful I am alive. At least that is what my uroligist says to me. Well, I just don't feel that way right now. It's been a year and now all the other issues are front and foremost. Even as I am typing this my eyes are filled with tears for what was and what now is.

Tom

By nancynursez637
Posted August 13, 2008 at 9:46 am

To some degree you are wondering if your urologist is correct in his judgement about the next steps. In this case, I would seek another opinion from a center that is known for bladder cancer work, like MD Anderson or others. They may do a record review for you, without traveling there, it does not hurt to inquire. Don't stay stuck wondering, and don't accept blindly. Take action and be your own best advocate. It is outstanding that you had no recurrence for 15 yrs, so prepare for the next 15 years by getting the best possible information before moving ahead.

Nancy

By nancynursez637
Posted August 13, 2008 at 9:50 am

PS taking action on your behalfill ease the depression, however I would also sit down with your primary care doc and discuss your depression. Medication can help by increasing serotonen. These meds are called serotonen reuptake blockers and are used for depression and chronic pain.

Best to you Tom

Nancy

By NYTechy
Posted August 13, 2008 at 4:25 pm

My upstairs neighbour had an RC for bladder cancer 10 years ago and has been cancer free ever since. Only found this out after my own diagnosis (at 44 yo). Small world huh?

Good luck to you Tom.

By sarahlee
Posted August 13, 2008 at 7:07 pm

I think you Doctor is just awful if he/ she lets you know you are just lucky to be alive, well it sounds like you are very sad and thats tough stuff, I hope you will get the help you need for depression no one should have to suffer the way you discribe.

By phallon
Posted August 13, 2008 at 8:17 pm

I also wish there were groups set up that we could meet with other people going thru what we are or have gone thru. I tried talking to my Dr's office but no one seemed to want to help me set anything up. I realize that not everyone out there, going thru this wants to meet others but I'm sure there would be enough that a group could be helpful. Some of the things we go thru, your right we can't just talk about it to someone that doesn't understand how we feel. As a woman I wonder if I were to meet someone how I would feel about telling them that I now pee through my navel. I try not to think about it most of the time because what I can't change I need to learn to accept but even with that there are times a person gets down. Just keep in mind that this group is here for all of us & there will be someone who will listen & respond.

Phallon

By JerseyGuy
Posted August 13, 2008 at 9:33 pm

Tom,
Nancy above offers some good if not excellent advise. I have found her advise and wise counsel valuble in other discussions. This forum has been great for me and I think you will find it to be a resource for good infomation and great for the soul. I have only been dealing with Bladder CA as part of my life since March. I just completed 6 weeks of BCG and a Bx was negative. So I'm not in the same boat with you and a lot of others in this forum, but my CA entitles me to membership and a voice.

So search the Web, consult with various groups and find something that addresses your needs. The fire is not out and you will find help. Check out Sloan (MSK) in NYC, Penn and Jefferson in Philly, Hopkins in Balt. and others. Keep looking, good advide and a plan of action is out there for you. Please, as important to you as our thoughts, your progress helps us. Please keep this discussion informed as to your progress.

Best wishes,
Battle on
JerseyGuy

By fran1
Posted August 14, 2008 at 6:20 am

Hi everyone

I have found that even a basic cancer support group is a huge help, and I would encourage you all to try to find one near you. Even though they may have different body issues, they all have to deal with seeing their body in a new way, whether physically and /or psychologically. Also all the other issues, like children, parents, mother-in-laws, food, etc, can be discussed with people who GET IT.
Obviously this forum is a fantastic facility too.
Depression is ignored a lot, and I would definately encourage you to keep trying until you find someone who takes you seriously. Many medical proffessionals DO understand how it can take over your life.
(and spartyman, get another urologist to help you, your urologist is really being unhelpful. my husband and I thought that we would never have sex again, but we tried various options and we have found something that works! There are about 10 different medications and surgeries, you could try the simple stuff first. We found that it took 2 years before there was a 'reaction') http://urol.co.uk/erctiledysfunction.htm

All the best,
Fran

By spartyman
Posted August 14, 2008 at 9:17 am

First, thank you all for allowing me to post something so sensitive to this board. I appreciate your responses. I have decided it is time to get some help and to take the time to unload all of these feelings to someone trained in listening skills, i.e. a shrink. It's time I get someone to talk with about how I feel and how this has all affected me. I have always been a family person and put my wife, daughter, and everyone wlse first. Maybe I need to learn to admit that this is something I can't and shouldn't have to deal with alone. There are just some things that I don't want to talk about with family. ( Again, my wife has been wonderful) I truly believe that counselling and emotional health is one of the missing links in treating people with any kind of cancer. I just don't understand the medical profession sometimes.

Tom

By RLayne
Posted August 14, 2008 at 10:03 am

Tom,

I was diagnosed at 47 (almost 2 yrs ago) and had a radical cystectomy with a neobladder. So, while I don't have the bag, I do still have th same issue. My wife is 2 years younger than I am and to think that our sex life would change this dramatically at this age was unthinkable to us. My urologist, who I am very thankful for, did not really get into this aspect ahead of the surgery, with the exception that they would try to do nerve preservation as much as possible. He has issued prescriptions for Viagra, and now has me trying to use Muse. We're making some progress, but not enough yet.

It is very depressing. We went to counseling for a while and while it helped some, a counselor that works mostly with cancer patients and survivors would be best. I'm starting to look for a new one now. Not only has it hit me hard, but my wife as well. We are very thankful for my good health so far and don't take that for granted. However the life changes can be pretty overwhelming.

Hang in ther eand keep moving ahead.

Randy

By MMB
Posted August 14, 2008 at 6:56 pm

Hello
I am so glad that you are going to talk with a counsler, I think sometimes our urologist and surgeons get so caught up in what they are trained to do with reconstruction of the bladder and getting rid of the cancer that the life changes they don't take into consideration.
I feel your discussions have touched a spot with most of us, because life has changed in some way. At times we may feel guility feeling the way we do because we are alive but I feel it is alright to grieve what we have lost. But along with grieving we have to let go of it and when we can't we do need to seek help to move on and there is absolutly nothing wrong with asking for it.
You sound as though you have a very supportive wife, praying that you will have some positive days ahead and remember take one day at time.
Mariann

By foman
Posted August 19, 2008 at 1:23 pm

Wow, although I am new to this site, I have read the statements, and I wish I would have found this site when I was going through all of it. I had stage 3 BC. I am 47 now, 46 when I was told about it. Its a huge shock as everyone here knows. I had a bladder made out of my intestines. It works great. I had a check up last week and the first thing my doctor told me was, " now we have gotten the cancer, lets get you back in the bedroom". I was so releaved to hear this. My wife and I are very much in love after 27 years, and although its not everything, it sure is nice to know that there is hope. He told me that it can take a year to get everything in working order again, but it will work, and if not there are other things that can be done. I got very depressed over the whole thing or cancer, then the loss of my love life. I had a heart attack at 39 (no I dont smoke), and had a 5 way bi-pass. I have seen the hospital more than I want to. Now, I am cancer free, the depression is going away (with the help of medicine, I had a hard time with the pills also), and I am back to the gym, trying to build the muscle back. Things that I thought I would not do again, I am doing. Life is so short, but never give up. Cancer does not win. You win. You have to learn that. There will be a day, when you go outside and look at the sky and smile, and think, ok. I beat that. Now I enjoy life even better. good luck, smile, and be determined.
Forrest

By loonym
Posted August 20, 2008 at 4:29 am

Howdy spartyman and all. A lot of people would find my situation depressing I think. There's a lot of negative. My cancer is advanced and very aggressive and fully outside the bladder at this point. My prognosis is not good. Surgery to remove the bladder was tried this spring and they found it was impossible since the bladder is stuck to my pelvis and small bowel. So all that was really done during the procedure was the ileal conduit. About 3 weeks after that my wife left me so I'm raising our 20 month old daughter on my own. My 1993 Jeep is constantly either broken down or barely going. My only income is a very small ssi check so we're poor as dirt and behind on everything and the money is literally gone by the second week of every month. Anyone depressed yet? I could go on ;) I'm not! I have so much joy in my life and every day is a blessing. We enjoy little things and spend our days smiling and laughing. We read, talk, watch silly shows and movies, play games, go for walks, pick berries, swim, go to the playground, cook, and tons of other stuff. She's taught me more about life than I learned in the entire 45 years before she came along. I'm happier than I ever thought possible. This doesn't mean everything's great because that's not realistic but we're ok and right now that's enough. Thanks, Jon

By nancynursez637
Posted August 20, 2008 at 6:52 am

Bravo, life is what happens to you while you were making plans, and to some degree I believe we go through what we do to get us where we are going. (if that makes sense). Living in the moment is critical, if we waste our time worrying we lose the life we have at this moment.

It is normal to be scared, worried, anxious or whatever, however these feelings can be managed with the help of counseling and or medication. Don't let them rob you of the life you have at this moment.
Best to you

Nancy

By balihigh
Posted August 20, 2008 at 10:17 am

As I am preparing for my RC on Sept. 5, I am reading everything again and hopeful that all your experiences will help me in my fight. I am already depressed just thinking about what lies ahead but hearing that you people have survived is encouraging.

Yesterday I was thinking how helpful it would be to attend a convention, gathering of some sort, of bladder cancer survivors and those of us fighting it. I wouldn't want it to be a marathon of horror stories or a competition to see who has gone through the most horrific events but more a celebration of life and probably, more importantly, an awareness for others about bladder cancer. Since I just joined this fight in Jan. of this year, there maybe since events that I have not heard of. One of the problems I incurred with this cancer is that it is often shoved under the bed (maybe I shouldn't use that word in this discussion as that does relate to one of my biggest fears and after reading your posts , many of yours too). There just doesn't seem to be much research being done for us and most people that I tell that I have bladder cancer, know nothing about it. It is not talked about like other cancers yet it is one of the leading ones. Is there a group I can join that does what I am talking about or do we need to form one?

I have received so much strength just from hearing and reading the posts on this site and a couple others that I think actually meeting fellow warriors would be like a family reunion. It would be a good dose of medicine.
Balihigh

By Karego
Posted August 20, 2008 at 9:04 pm

Spartyman, Balihigh, and all the posts in between, Some of you may have found this online community directly through BCAN and others may have come through Inspire. Either way, BCAN is happy you found this community.
John and Diane Quale founded BCAN in 2005 because they felt much like the rest of us that there was no help out there for BC patients. In three short years, the foundation has done much to help educate the public and provide support to BC survivors.
This past July, John lost his battle to BC after a valiant fight of eight years. I urge you to go to the BCAN web site home page (BCAN.org) and learn all you can and perhaps join us in our efforts to bring about more awareness to the medical profession as well as the general public.
BCAN needs willing volunteers. In the latest newsletter, a call for help to work with the medical outreach team was issued.
BCAN provides forums for patients in different areas of the country each year(the next one in Boston this fall). I have attended forums in Boca Raton and in Dallas where medical experts spoke to us, giving the latest treatments available with Q&A following.
This online community is provided to us because of BCAN and it's mission.
When I read Balihigh's last post, it gave me pause to think that many of our members on the online community may not be aware that this community is here because of John and Diane's vision and their willingness to provide a foundation that gathers all of us together to be a force for support and education.
In Nov/Dec of 2003 when I was diagnosed with invasive BC, an internet search for bladder cancer gave me almost nothing in the way of layman information. When I found BCAN in 2005, it was one happy day. I was eager to enlist my services to help bring about awareness. So, in Nov 2007, when this online community became a reality, I became one of the moderators. It has been pure joy to see the benefit it provides to all of us and the support we are getting from each other.
Every question and answer posted is helping untold members. There are many members who are silent readers, but they benefit from the discussions represented by those who do post. So, keep up the dialogue. We encourage each other and we educate each other.
One thing that would help BCAN to do their mission of education better, would be for those of you who haven't filled out your profiles on this site to do so. This community can be a resource for determining where the next forum should be held depending on location of the members. Up to now, BCAN has used the medical teams who partner with them for the forums to provide invitations from their patient files. The doctors have issued the invitations on behalf of BCAN.
Hopefully, my explanation will help you all see the big picture BCAN is working to provide.
Thanks to all of you who make this community work. Karego

By JimV
Posted August 21, 2008 at 12:39 pm

Couple of things. Regarding the earlier issue, a simple thing that needs to be said: in order for one to obtain treatment, any kind of treatment, one needs to seek it out. Help will not come to you on its own, regardless of how much emotional (or physical) distress you are in.

Also, some of us with our varying stages of illness have taken our attitudes to a different level, which shows to me that simple happiness can exist under almost any circumstances, albeit with occasional interruptions. This reality needs ot be taken to heart.

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