BC Husbands and Boyfriends Hangout

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Notsopuny5721
Notsopuny5721 Member Posts: 110
Hi, My name is Greg. My wife just completed chemo and is in the midst of radiation for her second incident of BC (the first one was 5 years ago).

I am looking for an online support group consisting of BC husbands/boyfriends to "hang" with and discuss a myriad of topics related to this situation: everything from coping with the diagnosis, being supportive during treatment, how to cope, intimate relations during/after treatment, etc., etc.

So, if you are a BC husband/boyfriend, stop by introduce yourself, and tell us as much about you and your SO as you'd care to share.

Cheers!
Greg
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Comments

  • livnlife
    livnlife Member Posts: 2
    edited July 2005

    Hi Greg! I'm not a husband or a boyfriend, but I want to say how wonderful it is to see supportive loving men out there who care so deeply about their S.O.'s. My husband has been a saint through all that we've been through in the last 7 months since my dx. I couldn't have done it with out him. I will surely tell him about this site. Michelle

  • jrc
    jrc Member Posts: 6
    edited July 2005
    I have search the web far and wide and have found very little to help the husbands or partners of BC women. My wife K was originally dx in 2003. She has had a recurrence in the other breast and now has bone mets. It has been an up and down road and we have had bouts of doubt, grief, and guilt. She is doing well with her current treatment. The ONC claims the numbers are going in the right direction. The latest issue is lymphedema. Physical therapy, the arm wrapping and now the Reid sleeve. I have been lurking around the forums on this web site for about 6 months. They have helped. My nature is not to join things and K doesn't like to talk about the situation. I'll be curious to see what surfaces from this thread.

    jrc
  • Notsopuny5721
    Notsopuny5721 Member Posts: 110
    edited July 2005
    Dear JRC: Thanks for your reply. I took the liberty to read some of your other posts around here, to get a better idea of your situation/background, etc.



    First off, my heart goes out to you and your family during this difficult time. May the good Lord give all of you the strength to carry on, and may you continue to hear good news about your wife's condition!



    I only recently joined this site (btw, I'm *not* BC Husband from NC; I should probably change my ID to something a little different, so as not to be confused--especially as he got here first)[Note: I just did, lol]. I'm glad to hear you've found it helpful and supportive.



    Another site you might want to consider is:



    http://health.groups.yahoo.com/group/Supporting_women_with_breast_cancer/



    It's a yahoo group started by a woman with BC (eventually hoping her husband would take it over). It's got about 3-4 active members.



    As for my situation, my wife Liz, had a lumpectomy/radiation 5-1/2 years ago, and then another lumpectomy/chemo (on the other side) beginning this past December. She is currently 2/3 of the way through radiation. The first time, there were no nodes involved; the second time there were.



    We have had several "scares" (i.e., symptoms indicative of metastasis--i.e., chronic hip pain, chronic dizzyness and nausea post-chemo), but thankfully two PET scans revealed them to be arthritis and a benign blood vessel mass in her brain, respectively.



    Incidentally, we have one (young) child at home; 3 others living outside the home.



    It has been and continues to be an emotional roller coaster since this past December. In addition to the emotional side of things, physically we are both near-exhausted most of the time. Her b/c of the ongoing treatments, and me b/c of the additional household responsibilities in addition to working full-time.



    Fortunately, Liz is starting to get out and about more. However, she has a tendency to overdo it when she starts to feel good, and then ends up in bed unable to move.



    Another good resource if you haven't read it already is Marc Silver's "The breast cancer husband" (book). It's an excellent resource and includes chapters on treatments, the emotional side of things, talking to the kids, etc. It's been of great help to me.



    God bless,

    Greg
  • Notsopuny5721
    Notsopuny5721 Member Posts: 110
    edited July 2005
    Michelle: Sorry for not replying to your post earlier. Thank you for your kind words of support. Any success in convincing your husband to check out the site?

    Best,
    Greg
    Quote:

    Hi Greg! I'm not a husband or a boyfriend, but I want to say how wonderful it is to see supportive loving men out there who care so deeply about their S.O.'s. My husband has been a saint through all that we've been through in the last 7 months since my dx. I couldn't have done it with out him. I will surely tell him about this site. Michelle


  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2005
  • Shemp
    Shemp Member Posts: 89
    edited August 2005

    Well, I'm one of the newer members to the "club." My wife was diagmosed 8-4-2005. She's 29, and I'm 28. We certainly never imagined ourselves in this situation. She's had a lumpectomy, and begins chemo on 9/2. All I can say is that the whole experience is surreal. So far, I've held up well, which makes me wonder how much of the reality has set in. I've taken a one-day-at-a-time approach, and viewed everything from a very clinical standpoint. I take my job to be the one to do the research, filter out the unnecessary bad news and junk, and pass on the good information. ABove all though, I of course make my number one job that of chief supporter. In that, I make myself a source of strength to her, advisor, open ear, cheerleader and stabilizer.

  • Notsopuny5721
    Notsopuny5721 Member Posts: 110
    edited September 2005
    Shemp: "Welcome" to the club. Sounds like you're doing all the right things, so far. There's an excellent book entitled "The Breast Cancer Husband," by Marc Silver, that I HIGHLY recommend you get a hold of and read. It has chapters on virtually every aspect of this situation and you'll get a lot out of it. It's helped me tremendously.

    Also, there's a yahoo group for for men whose SO's have BC that you also might wanna check out:
    http://health.groups.yahoo.com/group/Supporting_women_with_breast_cancer/

    Lastly, you mentioned you've been approaching things from a clinical point of view, which is well and good, but don't be surprised if one day you're driving and all of a sudden you start getting choked up, as the emotions you've been pushing down start welling their way back up. They're there, and need to be "taken care of" in some way, too.

    Best,
    Greg
    Quote:

    Well, I'm one of the newer members to the "club." My wife was diagmosed 8-4-2005. She's 29, and I'm 28. We certainly never imagined ourselves in this situation. She's had a lumpectomy, and begins chemo on 9/2. All I can say is that the whole experience is surreal. So far, I've held up well, which makes me wonder how much of the reality has set in. I've taken a one-day-at-a-time approach, and viewed everything from a very clinical standpoint. I take my job to be the one to do the research, filter out the unnecessary bad news and junk, and pass on the good information. ABove all though, I of course make my number one job that of chief supporter. In that, I make myself a source of strength to her, advisor, open ear, cheerleader and stabilizer.


  • Shemp
    Shemp Member Posts: 89
    edited September 2005

    Sorry I missed your reply by 5 days. I was starting to hear crickets around this thread so I stopped checking in. Just registered for the Yahoo group. Thanks for that link.

  • Bolder
    Bolder Member Posts: 5
    edited September 2005
    Hi Greg, I'm not going to lie to you. I'm canadian by nationality, and thought that your thread was for husbands and boyfriends from British Columbia. Not sure I would have started my thread if I knew what BC really stood for.

    Just wanted to stop by, and start participating on your thread... you can read all my sad story on my thread if you want -- but, I'm just all angry and venting over there.

    I'm going to try and follow your URLs... thanks for creating this thread -- I'll be back when I figure out how to contribute here.

    Bold.
  • Notsopuny5721
    Notsopuny5721 Member Posts: 110
    edited September 2005
    Hey Bold: Welcome, my man (did you see my post to your thread?) Funny, we were just in BC (Vancouver) visiting my in-laws (my wife is from Canada--Toronto originally).

    Although some ppl are gonna say I'm sounding like a broken record ('cause I do this all the time), but if you haven't done so, I highly recommend you pick up a copy of Marc Silver's "Breast Cancer Husband" book. It's an excellent guide written by a BC husband for other BC husbands. It's got chapters on everything under the sun, and has been extremely helpful for me.

    Hang tough, bro, and I look forward to your reply.
    Greg
  • Bolder
    Bolder Member Posts: 5
    edited September 2005
    Hi Greg, thanks for your post on my thread.

    Done. I ordered the Breast Cancer Husband on Amazon. What I've read so far on the internet has done nothing but scare me, and make me wish I wasn't me, so hopefully this will help.

    I'm hangin' tough. I'm made of titanium. It's my wife I'm worried about.

    Trying to be Bold.
  • Notsopuny5721
    Notsopuny5721 Member Posts: 110
    edited September 2005
    B: Good move, getting that book; I hope you find it helpful. Speaking of hanging tough, etc., what helped my wife was the cancer center where she was treated had this social worker/ psychologist on staff that used to circulate amongst the patients (she was also available by appt), and they also had a support group that met once a month.

    This way she was able to speak to a professional with a lot of experience counseling women in this situation as well as have a peer group with whom she could vent/share fears, etc.

    As for you, I know titanium is a strong metal, but I'm guessing that under extreme stress/temperature even it would develop cracks, etc. Therefore, I would suggest if you haven't already done so, to look for *healthy* ways to relieve stress, whether it's listening to music, praying/meditation, excercising, etc.

    I've found that the better I take care of me, mentally and physically, the better a caretaker I can be for my wife (more patient, understanding, etc.). And, it couldn't hurt either, if you could find a bud or therapist for that matter to whom you could unload your feelings from time to time. It can be very beneficial.

    Best,
    Greg
    Quote:

    Hi Greg, thanks for your post on my thread.

    Done. I ordered the Breast Cancer Husband on Amazon. What I've read so far on the internet has done nothing but scare me, and make me wish I wasn't me, so hopefully this will help.

    I'm hangin' tough. I'm made of titanium. It's my wife I'm worried about.

    Trying to be Bold.


  • Bolder
    Bolder Member Posts: 5
    edited September 2005
    G: my wife has a social worker/therapist -- good suggestion. She has her mother (massive phone bills). I'm working on a local friend.

    I'm exercising, listening to music, crushing anyone who gets in my way at work just for sport -- I'm good.

    My wife understands I need to take care of myself, if I go down for the count -- matters become much worse.

    I'll get back to you with thoughts on the book later.

    Take care, B.
  • Notsopuny5721
    Notsopuny5721 Member Posts: 110
    edited September 2005
    Bold: I know a little about big phone bills (my wife's parents and some good friends still live in Canada). Have you looked into Voyage, or whatever it's called, that offers Internet-based phone calls for a fraction of land-based phones?

    Speaking of taking care of yourself, someone at the yahoo BC support group (I've mentioned here in a previous post) mentioned the wonderful "medicinal" effects of good scotch, lol. Personally, with all the stress I've been under if I don't have my 1-2 oz of bourbon before going to bed I'd lie awake all night!

    Best,
    G.
    Quote:

    G: my wife has a social worker/therapist -- good suggestion. She has her mother (massive phone bills). I'm working on a local friend.

    I'm exercising, listening to music, crushing anyone who gets in my way at work just for sport -- I'm good.

    My wife understands I need to take care of myself, if I go down for the count -- matters become much worse.

    I'll get back to you with thoughts on the book later.

    Take care, B.


  • Bolder
    Bolder Member Posts: 5
    edited September 2005
    Where are those amazon f'ers with my book?

    Greg, I thought I replied to this post, my bad... here's the rewrite:

    Have been thinking about Vonage... we actually don't have a telephone... we've been just using our cellphones as we are renting a place while they build our house... good tip.

    I like the way you think. I'm definitely going for some 'medicinal' effect tonight... not into the scotch/bourbon, more of a grand marnier when it's cold kinda guy.

    That's the kinda advcie I was lookin' for!!!
  • Notsopuny5721
    Notsopuny5721 Member Posts: 110
    edited September 2005
    Bolder: Sorry to hear the book hasn't arrived. You can always take an advance peek at a B&N's near you.

    I'll be thinking 'bout you tonight, buddy, when I'm tipping my glass (Friday night is usually red wine, btw). I'll tell you: the world looks a whole lot better after a couple of ounces of bourbon, lol.

    I have to plead ignorance: what's Grand Marnier?
  • Shemp
    Shemp Member Posts: 89
    edited October 2005
    Speaking of which, my membership over there (yahoo board) has been awaitng approval for about two weeks now.... Do you know who's in charge?
    Quote:

    Bold:
    Speaking of taking care of yourself, someone at the yahoo BC support group (I've mentioned here in a previous post) mentioned the wonderful "medicinal" effects of good scotch, lol.


  • Notsopuny5721
    Notsopuny5721 Member Posts: 110
    edited October 2005
    Shemp: Sorry to hear about that. I just sent you a PM with the email address of the moderator.
    Best,
    Greg
  • Kevin_53
    Kevin_53 Member Posts: 1
    edited October 2005

    Hi is this thread still active. (Sorry just realised this is not a UK site, wonder why the dates were funny. I'm in the UK, but was just surfing for information, support, or something and came across this site. Regards to all)

  • Notsopuny5721
    Notsopuny5721 Member Posts: 110
    edited October 2005
    Hi Kevin: Thanks for posting. Yep, this thread is as "active" as the participants want it to be ;-). Feel free to post again and tell us what brought you here and what's on your mind.
    Best,
    Greg
  • gonmlobos
    gonmlobos Member Posts: 9
    edited October 2005
    hi greg, my wife is going to have a mastectomy on the 18th. wow that's tomorrow. i'm getting anxious. she was dx with dcis, but i know that there could be more to it when they get in there. i'm trying to expect the best, but the worst creeps into my thoughts from time to time. i know i'll do fine in handling what comes about.
    the scotch sounds good, but i would drink the whole damn bottle so i leave it alone. i am going through short nights, partly because of meds i'm taking. it doesn't help to have this bc deal running through my mind too. i'm going to order marc silver's book when i'm done here. i meant to do it a few days ago.
    well this is a cool thread, been looking for this for the past couple of weeks.i started a thread under my wife has been diagnosed with dcis. got a lot of good from the women there.
    i'll keep in touch. how are things going with you and your wife?
    tim
  • Shemp
    Shemp Member Posts: 89
    edited October 2005

    Good luck on the 18th. I can't speak for everyone, but the short nights haven't gone away for me. My wife had her 4th of 8 chemo infusions last week, so that's promising.

  • gonmlobos
    gonmlobos Member Posts: 9
    edited October 2005
    thanks shemp for the well wishes. her lymph nodes were clear. the surgeon took all the breast tissue she could. i hope it was just for precaution.
    that is good that your wife has got 4 infusions done you're on the down hill side now. are the side effects very bad? i hope not. i hope your short nights end soon too.
    you're right about this experience being surreal, i still couldn't believe she was having a mastectomy this afternoon as they rolled her away. it was an emotional roller coaster ride today. i learned about the drain this evening and how to measure and drain it. it sure was good to see her smile though, even though it was chemically induced :0) naturally we can't wait for the pathology report to come, but so far it looks promising.
    well i need to get my daughter and myself to bed, she is asleep on the couch. take care and i hope to hear more from you!
    tim
  • Shemp
    Shemp Member Posts: 89
    edited October 2005
    That's great that the nodes are clear! My wife had a lumpectomy and was able to get the drain taken out just 4 days later.

    It seems every persons side effects on chemo are different. Heck, my wife's weredifferent with each infusion! Each one can be summed up in a few words:
    1) Severe Headaches & Fatigue
    2) Nausea & Fatigue
    3) Extreme Fatigue
    4) Overactive Mind

    Despite the cumulative effect of chemo, she was back to work the Tuesday after her 4th chemo, which was given Thursday afternoon. After the 3rd, it took her until Thursday into Friday until she felt normal.

    The headaches and nausea with the first two treatments were cleared up by altering medications. It's just too bad there's a bit of experimentation in figuring out the hard way which ones work best without nasty side effects.

    As for the short nights, don't think that they're all bad. Some of it is doing some extra work around the house, but a lot of it is reading up on cancer care and treatment and fising out what's best, what's new. The more I read and understand, the more comfortable I feel. Then I can filter out the bad or unnecessary info before showing my wife.

    One of the best things I did, was stumbling across someone on here who had a similar diagnosis, treatment, age and life situation as my wife, but had just finished treatment. I hooked my wife up with her and this lady was able to prepare my wife with the real world knowledge she needed and the little practical tips that you miss at the doctor's office.
  • gonmlobos
    gonmlobos Member Posts: 9
    edited October 2005
    that's cool only four days on the drains. my wife got home this afternoon and now we are waiting for the path reports. we'll see if she needs any more treatment then.
    i've been the researcher too. i also tell her only what i think is necessary at the time. i feel more comfortable the more i read too. i never thought i would know so much about breast cancer. i'm still waiting on marc silver's book to show up.
    i hope my wife will get more active on the message boards, but i think she is just ready to move on and not let this be any kind of barrier. she will keep herself busy at work and her reading. but who knows? i don't think she is going to avoid the message boards either.
  • Notsopuny5721
    Notsopuny5721 Member Posts: 110
    edited October 2005
    Hi Tim and Shemp: Sorry for not replying sooner, but I haven't been on here for a while!

    Tim: How is your wife doing? Did you get the path report back yet? Yeah, you can get a lot of info about chemo and side effects from reading the threads here. But, as Shemp pointed out, everyone's reaction is a bit different. As for my wife, she had 9 lymph nodes removed (2 tested positive), and also came home with a drain. Now, about three months after she completed her chemo/rads, she is experiencing something called neuralgia, where her the arm on the surgical side goes numb. The feeling comes back when she massages it. She's been to a neurologist who prescribed a med, but the side effects were worse, so she stopped. We've heard from two others who've had the same thing, that eventually this condition will go away by itself. Good luck and keep us posted! P.S. Did you get a hold of Marc Silver's book?

    Shemp: How are you guys, doing? Your wife is about halfway through her chemo, right? Best,
    Greg
  • Shemp
    Shemp Member Posts: 89
    edited October 2005
    Halfway it is, thanks for noticing! In fact, today we went in and she started Taxotere, the 5th of 8 treatments. So the end is closer and closer. God willng, this is truly the end, forever and ever. She was quite pumped about being halfway through and now by being able to go from 4 down, 4 to go to 5 down and just 3 to go.

    We threw her a halfway through chemo surprise celebration. We all wore wigs to the party. I think it went over very well.
  • gonmlobos
    gonmlobos Member Posts: 9
    edited October 2005
    hi greg, glad you're back. we got the path report today. they took 5 nodes from jen all were negative.the tumor was 10x7x3cm. no idc. the onc said he had never seen larger than 5cm and couldn't find any reports of anything 10cm. he also said that he felt there was no need for any drug therapies or radiation because of the clear margins. the path report also says dcis mixed with areas of proliferative fibrocystic disease. i don't know what the pfd means yet. i'd love to hear about it if anyone knows, i'll do some research on it tomorrow too. we feel very lucky. i wish every one's path report was the same. tomorrow is the onc's last day at this job, he did say he could give us a referral to a radiation dr, but he didn't think it was necessary. i wonder if we should get another opinion from an onc who is going to be around for awhile. i did get marc silver's book and i've got a good start on it. i like it. i hope the neuralgia goes away soon for your wife. how is she doing otherwise?

    shemp, sounds like the party was great! glad the chemo is almost done. best wishes on the home stretch.

    tim
  • Shemp
    Shemp Member Posts: 89
    edited October 2005
    Tim,
    There's no way on earth I'd not get a 2nd if not 3rd opinions. We got our 2nd and 3rd from two different university hospitals that are designated by the National Cancer Institute as "Comprehensive Cancer Centers." Best money and drive time spent for peace of mind and reassurance. Listing here: http://www.cancer.gov/cancertopics/factsheet/NCI/cancer-centers Strangely, not one in New Mexico. It would be a haul for you, but it looks like Denver, Tucson and Scottsdale have centers. We only had two-hour (one-way) trips to each place. Maybe you could make a weekend out of it, send your reports and path slides in advance and go to an appointment on a Monday and drive back afterwards.

    Part of the reason I say all this is because in our 3 opinions, we've heard the exact opposite of you. My wife's tumor was under 1.3cm, no nodes and they had clean margins when they did the lumpectomy, but due to her age (primarily) and tumor grade of 3 (which was secondary), they wanted to be aggressive in the treatment, including the 8 chemos and radiation. All three oncologists independently agreed on this. The two university docs Karwall at Iowa and Stewart at Wisconsin) have a lot of credibility, so I don't take that lightly.
  • Notsopuny5721
    Notsopuny5721 Member Posts: 110
    edited October 2005
    Shemp: My wife also had taxotere as part of her TAC protocol. Great idea, that 1/2 way through chemo party! I'm sure see must have appreciated it greatly.

    Tim: I agree with Shemp that getting a second opinion is probably a good idea, if for no other reason than peace of mind. How does your wife feel about it? Is she in favor of a second opinion?

    Best,
    Greg

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