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  • Husband 37yrs, just diagnosed, many questions?

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    Old 08-02-2006, 12:58 PM   #31
    flygirl3
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    Re: Husband 37yrs, just diagnosed, many questions?

    Alison,

    I will be thinking of you today in hopes that your appt. goes well. I'm sure you are nervous, and I'm sure it feels weird now that you are doing this and not your husband. Although I haven't experienced cancer like this, but just going through this now with my husband, if it was ever to come up in the future I guess I would be a little bit more prepared and maybe not so nervous. However, it would be me and not him, so I would wonder what type of caregiver he would be. Quite honestly, I think women are better at the nurturing, so I hope and pray that your husband takes very good care of you, to the best of a man's capability--

    My name is flygirl because I travel for work, it has been our dream to always go to the Bahamas. Maybe one day when all is well we could visit. Just a dream, but never say never, right?

    A book would be great! I feel like going on some sort of public awarness tour of some sort to explain that this does affect all ages, I get so angry with the statistics of age involved with this cancer, and unless you have a prior family history of this, they pretty much disregard the fact that it could be cancer. It really can effect all ages and I wish they would offer routine colonoscopies at a much younger age, and or atleast stress the importance of getting them done at younger ages.

    Hope all goes well!
    Tonya

     
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    Old 08-02-2006, 02:55 PM   #32
    Nassau one
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    Re: Husband 37yrs, just diagnosed, many questions?

    Thanks Tonya, the appointment went very well. My oncologist was wonderful and acknowledged my love for research and knowledge!! I do think the fact that I travelled along with my husband through his journey to wellness, that it makes me less scared than I would have been. I have to have staging tests now and then chemo, but I am ready and feeling very upbeat.

    I feel we share such intimate emotions on this board that it would be enlightening for others to read...of course they can too, if they access our posts. There is no one I can really share my feelings with, either as a patient or a caregiver, more than I can on this board. No-one ever sounds fed up with hearing from us! I am going to join a support group but it could never be better than this board. I agree there does need to be more public awareness, particularly about colo-rectal cancer as it is so preventable. My husband could have had a colonoscopy much sooner and avoided lots of the problems he had. He was older too, so that gives him even less excuse not to be tested. Still, it is no use dwelling on that now! We just have to educate others.

    Maybe we will all have a reunion in The Bahamas one day!

    Love,

     
    Old 08-02-2006, 06:02 PM   #33
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    Re: Husband 37yrs, just diagnosed, many questions?

    Tonya:
    I have often wondered what people look like on this board... I have pictures in my head that I am CERTAIN are WAY off base! Thanks for the "Greek God" comment... I wish! I am 6'2" Blond, blue-eyed, and have been called handsome by some--not just myself!!! And my wife is extremely beautiful, in my eyes and others. She too is Blond and blue-eyed. Her eyes are incredible and is actually what got me. She also WAS actually approached to do eye-modeling, but never did. I lucked out in winning her over!

    We were constantly told when our kids were young that we should get them into modeling... apparently good genes between my wife and I. We didn't see it at the time, and wrote it off saying that all parents think their kids are cute... despite the fact that many other people told us too. But looking at pictures now of when they were younger, before they lost that "baby" look, we can NOW see that they probably could have made their college tuition!!!

    Anyway, what's beauty anyways? I think what's inside is just as important, if not more important.

    Anyways, we love to travel too...maybe one day we'll ALL meet up at Alison's. What do you say Alison?

    Tonya... I read your other post about your husband's Internal Medicine doctor and I have to tell you that I began bleeding at 28... but my IM said that it was hemorrhoids, stress, or Advil. Kept insisting this...never referred me to a GI. I was too stupid to do anything. I figured, a Board Certified IM is telling me what's wrong, why question? And even when I did, she just reassured me, which delayed diagnosis by 3 years. I finally went to a GI myself when she was no longer in practice. In any event, we are involved in litigation... and let me tell you, we are NOT litigious people. Anyways, I couldn't believe the similarities and thought I would tell you.

    Alison... Best of luck to you. I am glad to hear you are more upbeat today... I KNOW you will beat this!

    Fondly,
    CancerDad
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    Old 08-02-2006, 09:16 PM   #34
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    Re: Husband 37yrs, just diagnosed, many questions?

    PS Tonya... a port a cath is EXACTLY what I described in an earlier post. They make an incision in the chest---typically on the right side--- insert the catheter unit (about 1" long for a dual port and probably about 1/2" for single ports) that needles get inserted into the port or on one side if it's a dual port. Then they place a catheter line up to the jugular where they place another small incision. Then they fish the catheter through the jugular until it's about two inches from the heart. They will then sew up both incisions with sutures and the only thing you see if you look closely, once the swelling goes down, is the port; if you feel the skin then you can feel the line from the port to the jugular too. The procedure is about an hour...my procedure took double that because they said they ran into trouble creating a pocket in the muscle to put the port a cath due to my muscular chest. Seriously, they said that because I used to lift weights in the days before the kids arrived it made it a little difficult for them. Made me feel good, for about a SECOND!!

    It is a same day procedure. He will be sore for a little while, but it really is worth while to have the port. They can draw blood off of it, as well as hook the chemo lines while keeping his arms free. Also, it saves him from getting poked with needles too often only for them not to find a vessel... your husband sounds like me that he normally wouldn't have problems with blood draws. But after chemo, your vessels tend to "roll" and it's difficult to get a line. Also, the chemo tends to darken or stain your vessels after a while of treatment, so they say it's better to have it delivered through a catheter that delivers the chemo right to your heart, so that arteries closest to the skin aren't stained.

    I do have to say though, I never liked/like using my port for regular blood draws, as it hurt like hell to access it. The needles used are a thicker gauge which just hurt for me... although others have said they have no pain. If he does experience pain, then make sure he asks for Emla cream that he can put on 30-45 minutes prior to accessing the port. Also, Anesthesiologists don't like using them during surgery because the size of the tubing is smaller and in the event of an emergency, they want the safest sized tubing for medication. So they typically will place a direct line into a vein or artery. WHO KNOWS??? It's might just be a scam to get you to get the port, it gives the hospital more money, and makes it easier for the oncology team to hook you up!! I'm just kidding, it really does have a purpose! And, beats getting stuck EVERY time they need bloodwork, which is all the time, or to give you chemo.

    BTW... your husband is getting the same regimen of chemo/radiation I had pre-op. If he has questions, please don't hesitate to ask.

    Best of luck,
    CancerDad
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    Old 08-03-2006, 09:24 AM   #35
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    Re: Husband 37yrs, just diagnosed, many questions?

    CD-

    Thanks for the info, I will tell my husband about the cream. He said he's not looking forward to the port a cath- because of showering. He said the doctor told him he couldn't get it wet while he was getting treatment, which would be Mon-Fri. So, he's concerned that he won't be able to shower Mon-Fri, only bath--he's worried he won't be able to wash his hair. (Honestly, that's the last of my worries right now, but he is concerned).

    I thought about talking to a lawyer, but the problem I'm having is there is a cap on malpractice suits in Ca., $250,000. After all the costs and time I don't think it would be worth it. Also, it really was just the past 2-3 months before we saw the GI that she put us off, and told us that there was no chance it could be cancer, she told me, the youngest case she had ever seen in her 15 yrs. of practicing was in their late 40's and there was no way my husband could have this. (I guess I would probably have to prove that it spread alot in that time) She wanted me to calm down. What gets me even madder, is that she is totally out of the "loop" now, but calls us every few days to "check in" with us to see how my husband is doing, and she even tells me to call her after all of his appts. with whatever info we get to keep her updated. My husband says she really feels bad, but I think she's trying to cover her a_ _ ! It's very odd.

    I think I may be better off just taking this negative energy and using it for fuel to do something positive out of this. Such as raising public awareness. Women get regular Pap smears even when they don't have symptoms as a preventative screening, and this is done at young ages. I believe that something like this needs to be done for this type of cancer because it has such a high cure rate when caught in early stages.

    Tonya

     
    Old 08-03-2006, 10:57 AM   #36
    larbo's wife
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    Re: Husband 37yrs, just diagnosed, many questions?

    Hi Tonya,
    My husband showered all the time while his port was accessed. The nurses will put a waterproof tegaderm tape over the needle. If your husband has a hairy chest, make sure they shave the area first. It helps the tegaderm stay on tight and also is a lot less painful when it gets pulled off. My husband would tape a bit of plastic film around the tegaderm for extra insurance while showering. I would suggest getting one of those showers heads with a hose that slides on a pole and can be hand held for rinsing. That was a big help in keeping the port dry in the shower while it was in use. Larry had a shower like that while staying at the Hope Lodge. We purchased one for our home use also.
    My husband only felt pain the first time his port was accessed. However it was the same day he had his port put in. In attempting to be a macho man he neglected to take any pain medication because he wasn't hurting. I think he nearly went through the roof when they poke him later that afternoon. After that he never felt pain when they accessed it but he did have an itchy feeling every time.
    My heart goes out to you and yout family. Hugs,Kathy

     
    Old 08-03-2006, 09:10 PM   #37
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    Re: Husband 37yrs, just diagnosed, many questions?

    Hi again:
    There are SO many criteria you need to meet in order to qualify for litigation, never mind the time frame involved, as well as you said, you need to prove damages after had he been diagnosed when he should have been. 2-3 months didn't delay that much, unfortunately... unless he had multiple prostate checks and she found nothing. Obviously the tumor was there for a while. As far of the cap of $250k goes, I don't know whether that applies is NOT usually for damages as I understand it... I can't think of the proper legalese right now at this late hour. I do know that Bush was trying to do reform to cap malpractice rewards. But am not certain if that took place, or if it's a state regulation in California.

    We thought about this for A LONG TIME before making the VERY DIFFICULT decision to sue---It's not a fun adventure. However, we figure that rewards will be much greater to the colorectal charity/research firm of our choosing. Although, I must tell you that NO amount of money can make up for the HELL we/I have endured. And I would trade this in a HEARTBEAT if I could just have my body and my life back.

    In any event, I do believe your doctor is covering her a$$, although hopefully she has learned and will treat rectal bleeding in ANY age patient more seriously next time and immediately refer out for a GI evaluation. I'm sure she does feel terrible though.

    As for showering, I had the same experience as Kathy states with Larry. I would double tape the tegaderm with pink tape (a special waterproof tape, meant for this), and then just keep the "fanny pack" of chemo on the outside towel rack of the shower door. There's usually enough slack. And as for getting the tegaderm wet, he shouldn't just stand there and let the water beat down on his chest, but he can let the water hit his back for the most part, and there is NO PROBLEM shampooing. The nurse should explain this to you.

    A couple private questions... did he opt to store his sperm, JUST IN CASE (because there is no changing your mind later, and is relatively inexpensive for storage fees), and has he been tattooed yet?

    Just a disclaimer...You don't EVER have to answer any of our questions if you are not comfortable. We/I don't get offended easily. It's just my nature to try to help, and if there is ANY disagreement, or question, you can EASILY postpone therapy a week without harm to store. Because as I said, it's something you can't go back and change you mind later.

    I wish your husband the BEST of Luck, and know that we are ALL pulling for you both.

    BTW It's not just you--MANY of us can't wait until it's quiet and we can log onto the board where Most people just "get it." It's a welcoming, warming, special thing that is hard to explain when you have a non-judgemental place you can go, even with being anonymous, where people just GET IT. I can tell you, it's a rare "family" where you are automatically welcome. I for one, am glad you found us! As CORNY as THAT sounds!!!! WELCOME!

    Regards,
    CancerDad
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