Where do I go from here?

PitPat
PitPat Member Posts: 156
edited June 2014 in Stage I Breast Cancer

First of all hello everyone. My name is Patti.

I have invasive lobular cancer. I found the lump July 18 after a great weekend camping with my husband and 5 children. I immedicately knew what it was. the lump, the constriction of the nipple to the side and the discoloration of the areola. I went to my GP the next day and ever since then it has been a whirl wind of appts. this was 2.5 weeks after having a mammogram deem me clear.

So far I have had ultra sound (also showed nothing where there was an obvious lump), general surgeon do consultation then another appt for the biopsy (friggen ouch!). I have had an appt with the local internist. Tomorrow I have an appt with my first plastic surgeon. Next week I have a bone scan and another 2 appts with a second set of general surgeon and plastic surgeon. two days after that I will be doing my video interview with the genetics counsellor. Medical oncologist appt will not be far behind. Surgery for bilateral mastectomy with immediate reconstruction with hopefully a tram flap will be sooner than later.

I have to travel to the appts as I live in a rural area (second surgeons appts are a 4 hour drive away).

My family history: mom Dx at 49 with stage 3 died at age 54; maternal aunt Dx with re-occurance at 56, died at 56: Sister Dx at age 43, is at 3 years post treatments (unilateral mastectomy & node disection, 6 rounds of chemo and 25 fractions of radiation) I'm 46.

I can deal with the whole thing on an even keel. I have had more support surface than I can even think of. I am so blessed. I know that even though I have just recently moved to the area, I will not have to look far to find help.

That is until it come to my husband. We have not had the easiest time emotionally over the last few years and it wasn't until I took a great deal of life's responsibilities away from him and began working almost full time that our life has been better. Not perfect, by and large better.

He does a great deal for our family and I am thankful for all he does as the father to our kids. He has a demanding job that he does 5 days a week. He does all the grocery shopping, he does all the supper cooking. And he does for the kids what needs to be done. I'm the Alpha in the family and look after all else (making appts, looking after money, keeping the physical and emotional health of the kids in mind at all times, pretty much master of ceremonies of the family)

 I have such a strong personality and I am very...bull headed and he is not. I bulldoze over him for the most part not on purpose but because I am a quick thinker and he is not. I'm finding that I am frustrated. We are so mismatched. Very rarely do we have conversations because of our mismatched thinking.

 So here I am going through this and we can't connect. I have had so many people ay to me that I need to feel what I do when I do, but I can't when around him. I feel like I don't have the freedom to express myself or have an angry outburst without him closing down and turning away thinking I'm being agressive to him and he takes it personally. I feel like an idiot. I have to stop and explain to him why I'm feeling the way I'm feeling and it is not about HIM. I'm mad that in 4 weeks after finding the lump, he has not sought out any information about what is going on. Nothing on how to deal anything. It is all up to me to lead him through this like it is happening to him. I realize that he has to be himslef and deal with his own feelings and shock. But to choose not to inform himslef of ANYthing.

I feel like this diagnosis will make us or break us.

I can handle the thought of cancer treatments better than I can deal with having to keep telling him where I'm at what I need. Though he says he is supportive, his actions and words are less than what I need right at the start.

I feel selfish for even thinking that he needs to be any more than he is. I feel awful for wanting him to do more than he is or to know how to respond to me (ie when I have an angry outburst he gets angry back, or he can't see across that table I'm crying, or that when I am explaining myself that he can't look me in the eye and would actually sit with his back to me.)

Okay, I'l stop puking now.

Any help from others going through this is greatly appreciated. Has anyone had their relationships fail after diagnosis?

· Share on FacebookShare on Twitter

Comments

  • chrissyb
    chrissyb Member Posts: 16,818
    edited August 2010

    Hi Patti, sorry you have to go through all this.....it really is a bummer.  I can only go on my DH reaction.  When I was DX'd in 2003, he was very concerned as he was so afraid of loosing me.......he lost his own mum at four.......and then his step mum a couple of years before I was dx'd.  He was willing to do and say whatever he was directed.....but he was numb and really didn't know what to do but he was there.  I had to ask for what I needed from him every time otherwise he chose to stay out of the way purely because he didn't and couldn't deal with the situation.  After treatment and everything returned to 'normal' he continued to be there but always if I needed something I had to ask.  When I was dx'd with mets in 2009 it was like I had punched him.  His reaction was total and utter bewilderment, almost like a childs reaction would be to something they didn't understand.  Time has not changed his understanding even though I have had conversations with him regarding outcome....he still doesn't want to belive.  I have come to the conclusion, that this IS his way of dealing with my BC.  He, as your DH, has never tried to learn about this disease in any way.  It is as I call it 'The Ostrich Syndrome' If I don't acknowlege it, it isn't really happening. Sometimes I find this hard to deal with but I have come to understand the way he is, maybe your DH is dealing with your dx the same way.  I am like you, an organiser and I ran the household and our business but over time I have stepped back and tought him to do those things, and believe me, that was no easy chore.  There has been times when I have needed more that he was willing or able to give so I have turned to these boards for the extra strength that they give. I hope this helps you a little although maybe not in the way you would expect.  Love n hugs to you. chrissyb

    · Share on FacebookShare on Twitter
  • PitPat
    PitPat Member Posts: 156
    edited May 2011

    Thanks for the replay chrissyb.

    Ostrich syndrome is right. Very hard as I am one who grew up disecting every emotion that comes ot th surface. I have really stepped back with my hubby and my kids knowing that not every emotion needs to be picked apart.

    It is just hard to be sitting there and knowing that you want to burst into tears and he can't SEE it. I told him tonight that this will make us or break us and that I NEED him to put some personal growth into this whole thing, because if I have to go it alone I'll do it all alone.

    He says his greatest fear is being alone...interesting enough he is not doing what it will take to keep from being alone. I can't do this and carry him too.

    Thank you for sharing.

    · Share on FacebookShare on Twitter
  • chrissyb
    chrissyb Member Posts: 16,818
    edited August 2010

    Patti, don't carry him and don't disect every emotion you feel he should have.....just accept.  It's hard but just like everything that goes with this disease...it's do-able.  Gosh! it sound like my words to my DH coming from your mouth.......if I have to do it alone then like everything else, I'll do it alone as per usual........my words said in anger and frustration at the lack of response from him.  I do know how you feel and while I'm around, you are never alone. pm me anytime you want to talk and you can always come to these boards to share, vent, cry and all the emotions you need to share or just for the friendship we find here.  The women here are really great.  Love n hugs to you. chrissyb

    · Share on FacebookShare on Twitter
  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited August 2010

    PitPat, I can certainly understand your feelings.  Its been my experience that men are terrible about feelings--and that is why we have our women friends and this board.  You will find so much support and caring here on this board.  If I may suggest, try to focus on yourself and what you need at this time-reach out to us we are here for you.  Your husband is probably picking up your feelings even tho you may not have said anything and feeling even more unable to help.  Good luck.

    · Share on FacebookShare on Twitter
  • PitPat
    PitPat Member Posts: 156
    edited May 2011

    thanks for the fed back gals. today is a better day and I really opened up on our drive to see the plastic surgeon for the first time. We have agreed that he is who he is and has no ill wishes to me and will not always react as I would want him to. We also agreed that I need to talk and if I can't talk to him thn he will not be put out if I spend time with someone who does fill that need.

    the surgeon asked my husband if I gave him a list of my needs yet. My husband answered "no, she expects me to read her mind". We did have a bit of a laugh, where upon I said that I then will get upset if he can't.

    It isn't easy.

    ************************************************************************************************************

    I wrote the following today for my FB friends to keep tabs on what is up with me without having to put out multiple messages or updates. What I didn't say was that I have chosen to be reconstructed with implants. It also buys me times to think further on Free Tram flap and I preserve the breast skin if I choose an autologenous flap later.

    ***************************************************************************

    Patience, I'm not sure if I have any left. My head is whirling with choices, reading, seeking answers, having an idea of what I want to do alternating with having no idea what to do. The blur of appointments only makes my head spin.

    I have support all around me. For having only been in the small town for just over a year I'm sure if I sent out the message that I needed a casserole, I'd have 20 at my door by supper time. I have been very blessed this way.

    I feel like it is all coming at me a million miles and hour and I have to make a decision fast! I have been through a whirl wind of appointments; from catching up with my GP to the recent Sunday afternoon plastic surgeon consultation to having lab work done. But each appointment has to be done when each person is available. And that takes time. though inmy case... not much time interval has occured betweent he visits. A team approach does mean meeting with all members of the team and possibly more than once (as it will be with the general surgeon). And even before I can go for surgery I will have to do all the pre-admission stuff. Roller coaster ride? You bet, and I'm not very fond of roller coasters.

    I'm a spinney kinda girl: can't hold me down for one thought or another when it comes to making a choice. I know I'm having a bilateral mastectomy. That is that. Bilateral is because of the invasive lobular carcinoma, the chances of it occurring in the other breast is pretty high, so goodbye booby. What has been making my head spin is the choices of reconstruction to do...or to even do it. This has been the hardest part to wrap my head around. From doing nothing, to complete autologenous reconstruction using abdominal tissue. I had recently seen an amazing reconstruction and thought..."that's the way to go", just get it all done in one fell swoop. Well...not so fast. As much as it comes down to personal preference, choice is based on what the surgeon can do with what a body has.

    So I have waited until today to have my first plastics consult. I had originally rejected going to the hospital this surgeon practices out of for fear of infection, but really good attention to hand washing and getting out of the hospital as soon as possible is the best to ward of wayward bugs. And going to a bigger center does not mean better results. I wasn't even sure if this would the surgeon to do the procedure I wanted. But as time lead me to the chair across from his desk I felt more confident that I was where I needed to be. And then he spoke. All I could think of was "I'm in".

    His voice and manner was the exact same as my plastic surgeon for all my burn reconstruction. I instantly felt comfortable and with my husband at my side I stood still for the first time and listened to what options he had to offer. I was amazed that by the time I left I felt lighter, happier and de-stressed for the first time since seeing the "abnormality". So I have made a choice that will lead to quicker recovery and I can stay in my home community for my care. It will also buy me time to make bigger choices when it comes to choosing the bigger option. That is if I am even a candidate.

    So for now I still have things to do and places to go and test to have and friends to see.

    · Share on FacebookShare on Twitter
  • nora_az
    nora_az Member Posts: 720
    edited September 2010

    Hi there

    This is my first post!  All I can say is that I totally relate to you. I am the bull headed alpha of our family. My husband and my relationship has been a bit emotionally distant the past few years.

    When I told my husband I have IDC he broke down crying. It was ME who was trying to make him feel better about my diagnosis. I didn't cry and have yet to cry. I am more like  "Just tell me what I need to do and where I need to go and let's get this done and over with so I can get on with my life" sort of attitude. I am so like my mom who is a breast and colon cancer survivor.

    · Share on FacebookShare on Twitter
  • chrissyb
    chrissyb Member Posts: 16,818
    edited September 2010

    Hi Nora_az, sorry you need to be here but glad you are, welcome.  You sound exactly like me and have reacted to your dx as I did.  Please, even though you have yet to cry and are being strong for your family, please, please take sometime for yourself and really digest exactly what you have been told.  This is a life changing dx.  So good to hear that your mum is a survivor, it's always good to know.

    Love n hugs. chrissyb 

    · Share on FacebookShare on Twitter
  • JanetinVirginia
    JanetinVirginia Member Posts: 1,516
    edited September 2010

    I wonder why there is not a discussion forum just for husbands?  (I'm new, so maybe there is and I just don't know about it.)  But, seems to me the husbands probably feel isolated and have no one to talk to who is going through the same thing.  It's not the same talking to a neighborhood buddy or another man at work ---who has no clue what it's like.

    Patti - five children?  You are so blessed!  For a lot of men, 'still waters run deep' and they bury those feelings so deep you think they aren't there.  You need each other more than ever & everybody handles things differently.  Maybe talk to a professional together or a couples cancer support group or something?  I don't know how old your kids are, but they are going to need both of you.  Cancer puts such an enormous strain on everyone in the family.  Hang in there & hope it starts to get easier!

    · Share on FacebookShare on Twitter
  • lago
    lago Member Posts: 17,186
    edited September 2010

    When I first started going through this earlier this summer my husband didn't seem to want to talk about it as much as I did. I was doing all kinds of research to educate myself. I slowly let him know a few things but not everything. He was rather quiet every time I gave him more info. I got the feeling I was scaring him.

    But I understood. He was dealing with the shock of it all. He needed to process it. Yeah this is about me but him too. I'm sure he was worried about losing me.

    That was the beginning of the summer. Now I'm 12 days post surgery. He's been on board for quite some time. He wants to come to doctors appointments even when I don't feel it necessary. Much easier to discuss things now. It just took him time to digest… just like it took time for us to digest.

    I would suggest you two go as a couple and talk to a professional. It will really help you to understand what he's going through and for him to understand how you feel. This is tough stuff.

    · Share on FacebookShare on Twitter
  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited September 2010

    PitPat, your husband sounds a bit disabled - as though there is more than an ostrich attitude going on.

    Does he have either a mental disorder or learning disability or attention deficit disorder? Has that ever been considered? Taken in isolation, the things you point out sound annoying but within the norm, but there are just too many of them. It sounds as though you have been taking care of him for years. I am really sorry that you are feeling so vulnerable right now. He may need to get his own treatment. I may be dead wrong. This is just a layperson's reaction. I don't think it is the typical "head in the sand" "slightly oblivious" husband, even if he has those characteristics too.

    · Share on FacebookShare on Twitter
  • PitPat
    PitPat Member Posts: 156
    edited May 2011

    Thank you everyone for our input.

    Anthena: Yes there are issues that are underlying this whole thing.

    I am now 18 days post op. I have not had to ask for anything. For the first week I was nursed in bed with all my needs met. He has been to all my appts except where I have said that it is okay for him to not take time off work. I think him having "tasks" to do to show me how much he cares allows him to show me exactly that. I can also see that if i need something then I have to ask him. I am slowly coming to the realization that HE CAN N0T READ MY MIND!!! lol

    Is it easy? No because life is completely different and I now have more to deal with on top of what I had to do before cancer. But I know that all I have to do is ask...and he will be there and he is doing his best to understand and get through this period of time.

    I'm up for chemo within the next 6 weeks. I have 4-5 months of treatments. So we'll do what we can to get over this mountian.

    · Share on FacebookShare on Twitter

Categories