Rookie could use some advice

cvolk821
cvolk821 Member Posts: 36
edited March 2014 in Breast Cancer #1
I'm new to this site, and new to the experience. I've read all of these postings - some have frightened the fool out of me, others have provided an insight I desparately need. Ok, veterans, can you give a rookie a hand? I have been diagnosed with ILC (Invasive Lobular) and am scheduled for a bilateral mastectomy next Thursday with reconstruction. I know all of our experiences are unique, but would like to know:
1.What were your experiences directly following surgery. How long should I arrange for help after surgery?
2. How did you feel two weeks after your surgery - as in should I make plans for Thanksgiving?
3. Do you find it exhausting managing the drama for the people who love you?

I'll be coming back to you for more advice, oh wise ones. I'm only beginning...
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Comments

  • tasha_111
    tasha_111 Member Posts: 2,072
    cvolk
    Hi there, welcome. I didn't have a mastectomy, only a partial and lymph node removal. I was fairly comfortable after surgery but not able to do a lot due to the nerve damage... That lasted quite a long time. Thanksgiving?..I couldn't have managed that 2 weeks later, but you may have more help and support than I did. (I sure hope so)
    Exhaustion....?......Yes loads of it.
    I hope you do OK, Life DOES get back to some semblance of normal eventually. Huge hugs and best wishes to you. Jxxxxxxxxx
  • tjhay
    tjhay Member Posts: 655
    The best advice I can give
    The best advice I can give you is to let your friends and family take care of you, let them wait on you, shower you with over concern. As far as thanksgiving is concerned hand it of to them and let them provide.
    Listen my new sister, you do have a heck of a fight comming up, but you are not alone. We are all here for you, and will comfort you the best we can. There will be times where you will sware you felt us standing right beside you. Take your time in healing, dont worry about what is to come. Instead each find little things to be thankful for all the rest will come.
    tj
  • natly15
    natly15 Member Posts: 1,941
    1. I had a lumpectomy, and
    1. I had a lumpectomy, and then 2nd surgery to remove rest of lymph nodes. You look fairly young, but surgery knocks the you know what out of you. Get all the help you can. This cancer business is no cake walk.

    2. Make plans to have other people do Thanksgiving this year, so you can sit back and mend.

    3. Oh the loved ones!! They need to also go thru their fears, concerns, and emotions. Let them, but remember you cant fix them and they cannot fix you. Try to detach from their drama. You need your energy for you. In the kindest way possible, I gradually had to train some of my relatives on how I wanted to be treated. I had to let them know that I was a big girl, I had qualified doctors, and I was doing eveything I could to follow all the doctor's expert advice.

    4. Be sure to come back here often. You will find a group of the most supportive, knowledgeable, amazing people who really know whats happening. You can usually find an answer to almost any question you may have. It's unfortunate, that like the rest of us, you have reason to be here. That being said, welcome to a very supportive network of new friends.
  • elizarose
    elizarose Member Posts: 124
    I always worry a little
    I always worry a little about how much to share with someone facing this battle. I had a mastectomy, right side, after 5 months of chemo so I was already pretty worn out. I will tell you that for me it was more painful than I expected it to be and the pain affected my arm and shoulder more than anything else. If you make plans for Thanksgiving, they should be plans to eat and rest! I got my drains out 2 weeks after surgery so I was very happy about that!
  • contrail
    contrail Member Posts: 129
    Good Advice
    The veterans on this websight have all given you some very good advice and information. They always do. I was diagnosed with breast cancer on December 2, 2008. I had my mastectomy on December 23, 2008. I went home on Christmas Eve with two tubes still attached. Thank goodness my oldest daughter is a nurse, and basically took over. I was not in alot of pain, thanks to pain meds, but believe me, you don't want to plan Thanksgiving this year. Like everyone else has said, let someone else take over. You be the princess and let others pamper you. My daughter helped me with bandaging and cleaning out tubes, etc. for about a week, then I took over. Don't try to do too much too soon.

    As far as managing other's drama, you need to allow them to work through their own fears about all of this, and I found that one of the best ways to help them, was to have a positive attitude myself. My daughters kept telling me I was in denial, but I don't think I was. I knew that I had a fight ahead of me, but I've had battles before. I knew I was up to the challenge. Being positive, is probably one of your best weapons in this battle.
  • Wolfi
    Wolfi Member Posts: 425
    I'm with TJ
    I agree with TJ - let your friends and family help you and let them deal with the Thanksgiving activities. You may feel just fine by then, but you may not. The thing I've found with having bc is that it is a "one day at a time" kind of life for a while. I would feel fine one day and lousy the next. Surgery, chemo, radiation, medication and stress over the whole life changing experience can throw you for a loop. I would suggest accepting as many offers of meals as you can get - this helps a lot.

    As far as the drama of the people that love you: don't spend too much time dealing with friends and family members who seem to take away your energy. You'll need all of your energy for yourself and can't afford to spend much on other people for a while. There are some friends and co-workers of mine that don't even know I have bc even though I was diagnosed in June and had my bilateral in August. I chose to not tell them because I knew that they would be too much of an emotional and mental pain than I needed at this time. Some people seem to mean well, but do things (like fund raising or taking up a collection) in your name just so THEY can be the center of attention.

    My advice to handling some of the drama is having a person who is your "middle man" when dealing with exhausting people. My husband does this for me - he deals with the phone calls, the visits, problems with the kids, etc. It is nice to have to tell only one person when I don't feel well enough for company and everything gets taken care of.

    Good luck next Thursday! Post when you can.
  • natly15
    natly15 Member Posts: 1,941
    Wolfi said:

    I'm with TJ
    I agree with TJ - let your friends and family help you and let them deal with the Thanksgiving activities. You may feel just fine by then, but you may not. The thing I've found with having bc is that it is a "one day at a time" kind of life for a while. I would feel fine one day and lousy the next. Surgery, chemo, radiation, medication and stress over the whole life changing experience can throw you for a loop. I would suggest accepting as many offers of meals as you can get - this helps a lot.

    As far as the drama of the people that love you: don't spend too much time dealing with friends and family members who seem to take away your energy. You'll need all of your energy for yourself and can't afford to spend much on other people for a while. There are some friends and co-workers of mine that don't even know I have bc even though I was diagnosed in June and had my bilateral in August. I chose to not tell them because I knew that they would be too much of an emotional and mental pain than I needed at this time. Some people seem to mean well, but do things (like fund raising or taking up a collection) in your name just so THEY can be the center of attention.

    My advice to handling some of the drama is having a person who is your "middle man" when dealing with exhausting people. My husband does this for me - he deals with the phone calls, the visits, problems with the kids, etc. It is nice to have to tell only one person when I don't feel well enough for company and everything gets taken care of.

    Good luck next Thursday! Post when you can.

    Wolfie has made a very strong point
    A middle man is an excellent way to deal with those exhausting loved ones. They mean well, but you dont need any additonal drain of your energy. My husband hates talking on the phone, and at times will not answer it. If I'm having a bad day sometimes I just let it ring and get back to them when I'm up to it. At other times, I'll pick up, let them know I'm having a bad day and ask that they call or visit when I'm feeling better. My relatives get all shook up if they cant reach me, and many are out of state, so one way or the other they want updates. Emails also work.
  • cvolk821
    cvolk821 Member Posts: 36
    natly15 said:

    Wolfie has made a very strong point
    A middle man is an excellent way to deal with those exhausting loved ones. They mean well, but you dont need any additonal drain of your energy. My husband hates talking on the phone, and at times will not answer it. If I'm having a bad day sometimes I just let it ring and get back to them when I'm up to it. At other times, I'll pick up, let them know I'm having a bad day and ask that they call or visit when I'm feeling better. My relatives get all shook up if they cant reach me, and many are out of state, so one way or the other they want updates. Emails also work.

    All of my people are out of
    All of my people are out of state except for my boyfriend. I have my dearest girlfriend coming in town for my surgery and my sister (who is a nurse) is flying in to stay with me for about a week afterwards. Steve (boyfriend) will make a poor middleman, as he is still acting like this isn't happening. Our offer is to go to Florida (from NC) for Thanksgiving where his sister can feed me her gourmet cooking while I sit with my feet up watching football all day like a princess. I understand this is their support and vote of confidence - to plan future events as if I'm already healed. I get that. I just don't know how realistic this is.

    Thank all of you for your input and support. I've already learned a lot from you, and feel less alone. Unfortunately, you all know how scary it is out here in the "we just don't know what we'll find during surgery" zone. Thank you for allowing me to check back frequently to pick your collective brain!
  • Jadie
    Jadie Member Posts: 723
    Make plans for Thanksgiving
    Plan on someone else cooking, cleaning and waiting on you hand and foot. And plan on sitting back and enjoying it.

    Hugs
    Jadie<3
  • m_azingrace
    m_azingrace Member Posts: 399
    cvolk821 said:

    All of my people are out of
    All of my people are out of state except for my boyfriend. I have my dearest girlfriend coming in town for my surgery and my sister (who is a nurse) is flying in to stay with me for about a week afterwards. Steve (boyfriend) will make a poor middleman, as he is still acting like this isn't happening. Our offer is to go to Florida (from NC) for Thanksgiving where his sister can feed me her gourmet cooking while I sit with my feet up watching football all day like a princess. I understand this is their support and vote of confidence - to plan future events as if I'm already healed. I get that. I just don't know how realistic this is.

    Thank all of you for your input and support. I've already learned a lot from you, and feel less alone. Unfortunately, you all know how scary it is out here in the "we just don't know what we'll find during surgery" zone. Thank you for allowing me to check back frequently to pick your collective brain!

    Hello
    Cvolk821, No one wanted this terrible disease, but we are all grateful to have this place to come to. Welcome. The members here will share all their best wisdom, advice, comfort and support. I had lump and lymph node removal in July. My discomfort was minimal, compared to what I've read that others have endured. Prior to the surgery I had lots of energy and ambition for making plans. However, I was exhausted for weeks afterward, I think in large part because of the anesthesia. I could not have traveled, even if I had wanted to. I wanted to stay in my own comfort zone, surrounded by familiar things, sleeping in my own bed.
    You should probably ask your doctors if traveling will be okay for you, especially if you are considering flying.
    I hope the surgery goes well for you. Please keep us informed of your progress. Hugs. Gracie
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    Jadie said:

    Make plans for Thanksgiving
    Plan on someone else cooking, cleaning and waiting on you hand and foot. And plan on sitting back and enjoying it.

    Hugs
    Jadie<3</p>

    Hi and welcome to the board.
    Hi and welcome to the board. I had a lumpectomy, so, my healing wasn't that bad. I then had radiation treatments 6 weeks after that. I had a lot of support though, from my husband and my family, friends and coworkers, still do actually. That is so important. Let others take care of you and help you. Don't turn down help because you will need it, physically and emotionally. And, if your boyfriend is in denial, talk to him seriously because he will need to step up to the plate and be your stronghold. This isn't the time for someone to not do anything and everything for YOU! Good luck!
  • Wolfi
    Wolfi Member Posts: 425

    Hello
    Cvolk821, No one wanted this terrible disease, but we are all grateful to have this place to come to. Welcome. The members here will share all their best wisdom, advice, comfort and support. I had lump and lymph node removal in July. My discomfort was minimal, compared to what I've read that others have endured. Prior to the surgery I had lots of energy and ambition for making plans. However, I was exhausted for weeks afterward, I think in large part because of the anesthesia. I could not have traveled, even if I had wanted to. I wanted to stay in my own comfort zone, surrounded by familiar things, sleeping in my own bed.
    You should probably ask your doctors if traveling will be okay for you, especially if you are considering flying.
    I hope the surgery goes well for you. Please keep us informed of your progress. Hugs. Gracie

    Flying
    I agree with Grace - check with your doctor first about traveling. If you have lymph nodes removed you may have lymphodema which could start or get worse due to the cabin pressure when flying. I would suggest clearning ALL travel so soon after surgery with your doctor just to be on the safe side. I would hate for you to be in another state if you ended up with an infection from surgery or swelling (lymphodema) from flying. It would be difficult for me to have to go to a new doctor in an emergency like that.

    Good luck!
  • e_hope
    e_hope Member Posts: 370
    welcome.... I too had a
    welcome....

    I too had a double mastectomy back in Feb this year.

    **after surgery**
    * you will be very uncomfortable.... and the worst pain ever the first 12 hours after surgery
    * you will have 2 drains in.. when your discharged from hosp.. ( I had mine in for 14 days, surgeon orginally told me 1 week, so be prepared)
    * you won't be able to put your arms over your head
    * can't lift anything.. not even your kids (if you have them.. my youngest is only 2)
    * and even sitting in the car in uncomfortable.. ugh you feel every bump

    *** 2 weeks after***
    * I still couldn't drive (or at least safely) because with the limited range of motion it was difficult to turn the stearing wheel esp to park ( I only started driving a little at around 3 weeks post op... and sitting in a car for long periods was terrible..
    * I still had to have someone come in to help me with the kids (6, 3, and 2 when I had my surgery) if my hubby wasn't home
    * and still uncomfortable, but was getting out of the house a little

    **** managing love ones ****

    * let them help you, it makes them feel better and gives them a purpose in all of this, esp with cooking meals and doing your house work , which you won't be up for doing
    * I would also take a different person with me every time, to one take some of the stress off my husband, to give me a break from him, and my friends had a something they could do to help..
    * you will see after surgery, people are less stressed about you.. (at least that is what I found) in the beginning everyone is there and concerned.. constant phone calls and visits... and after the double mastectomy and I started chemo.. less and less people came around
  • sherria49
    sherria49 Member Posts: 126
    Hi Cvolk!
    I'm just a few weeks ahead of you, I had bilateral mastectomy w/reconstruction 10/30, sent home 10/31. I had a drain on each side. Everyone's pain tolerance is different. My chest felt like a set of encylcopedias on them. The drains were the pain. My daughter, 19 (not a nurse), became my nurse. Here I am not even 2 weeks after, 1 drain removed, other one coming out tomorrow!! Woo Hoo!!

    I would suggest, like everyone else here, that you allow someone else to take over the Thanksgiving activities and be the princess. I am not even considering doing Thanksgiving myself. Please, clear with you Dr before traveling.

    I also agree to find someone to be the middleman for you.

    Come back and post, read, vent as much as you need or want. The veterans here are the best. My thoughts and prayers are with you.

    Hugzzzzzzzzzzzzz
  • cvolk821
    cvolk821 Member Posts: 36
    sherria49 said:

    Hi Cvolk!
    I'm just a few weeks ahead of you, I had bilateral mastectomy w/reconstruction 10/30, sent home 10/31. I had a drain on each side. Everyone's pain tolerance is different. My chest felt like a set of encylcopedias on them. The drains were the pain. My daughter, 19 (not a nurse), became my nurse. Here I am not even 2 weeks after, 1 drain removed, other one coming out tomorrow!! Woo Hoo!!

    I would suggest, like everyone else here, that you allow someone else to take over the Thanksgiving activities and be the princess. I am not even considering doing Thanksgiving myself. Please, clear with you Dr before traveling.

    I also agree to find someone to be the middleman for you.

    Come back and post, read, vent as much as you need or want. The veterans here are the best. My thoughts and prayers are with you.

    Hugzzzzzzzzzzzzz

    Wow girl, you're moving
    Wow girl, you're moving right along. I am only twelve days behind you, and in as much as I acknowledge all of our experiences are unique, I choose for mine to go as well as your has so please keep us (well really me) in the loop. Thanks for your input!
    Connie
  • cvolk821
    cvolk821 Member Posts: 36
    e_hope said:

    welcome.... I too had a
    welcome....

    I too had a double mastectomy back in Feb this year.

    **after surgery**
    * you will be very uncomfortable.... and the worst pain ever the first 12 hours after surgery
    * you will have 2 drains in.. when your discharged from hosp.. ( I had mine in for 14 days, surgeon orginally told me 1 week, so be prepared)
    * you won't be able to put your arms over your head
    * can't lift anything.. not even your kids (if you have them.. my youngest is only 2)
    * and even sitting in the car in uncomfortable.. ugh you feel every bump

    *** 2 weeks after***
    * I still couldn't drive (or at least safely) because with the limited range of motion it was difficult to turn the stearing wheel esp to park ( I only started driving a little at around 3 weeks post op... and sitting in a car for long periods was terrible..
    * I still had to have someone come in to help me with the kids (6, 3, and 2 when I had my surgery) if my hubby wasn't home
    * and still uncomfortable, but was getting out of the house a little

    **** managing love ones ****

    * let them help you, it makes them feel better and gives them a purpose in all of this, esp with cooking meals and doing your house work , which you won't be up for doing
    * I would also take a different person with me every time, to one take some of the stress off my husband, to give me a break from him, and my friends had a something they could do to help..
    * you will see after surgery, people are less stressed about you.. (at least that is what I found) in the beginning everyone is there and concerned.. constant phone calls and visits... and after the double mastectomy and I started chemo.. less and less people came around

    Thanks for the specifics
    Thanks for the specifics E-Hope. I've been real concerned with driving and know now I'll need a better transportation plan. I don't have any little ones to arrange care for, just myself.

    Where are you now in the process nine months after your mastectomy?
  • natly15
    natly15 Member Posts: 1,941
    cvolk821 said:

    Wow girl, you're moving
    Wow girl, you're moving right along. I am only twelve days behind you, and in as much as I acknowledge all of our experiences are unique, I choose for mine to go as well as your has so please keep us (well really me) in the loop. Thanks for your input!
    Connie

    Cvolk another suggestion for
    Cvolk another suggestion for relatives. A website called Caringbridge that can keep all those out of state relatives updated. I personally have not used it, but have heard really good things about it. I'm guessing it would cut down on phone calls.
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    natly15 said:

    Cvolk another suggestion for
    Cvolk another suggestion for relatives. A website called Caringbridge that can keep all those out of state relatives updated. I personally have not used it, but have heard really good things about it. I'm guessing it would cut down on phone calls.

    Thank you Wolfi and E-Hope .. wonderful, insightful
    information for any new comer or chemo chick like myself with surgery comning up first of this year.

    I am printing and keeping at finger tips in my breast cancer journal.


    VickiSam
  • cvolk821
    cvolk821 Member Posts: 36
    VickiSam said:

    Thank you Wolfi and E-Hope .. wonderful, insightful
    information for any new comer or chemo chick like myself with surgery comning up first of this year.

    I am printing and keeping at finger tips in my breast cancer journal.


    VickiSam

    We can't know how we will
    We can't know how we will individually respond to our surgeries and/or treatments but all of us "Rookies" need this practical advice. I am so grateful to all of you for your patience with us new comers. You're a smart cookie VickiSam! I'm doing something similar by keeping notes on where I find specific information on this board so I can return to it.
  • m_azingrace
    m_azingrace Member Posts: 399
    cvolk821 said:

    We can't know how we will
    We can't know how we will individually respond to our surgeries and/or treatments but all of us "Rookies" need this practical advice. I am so grateful to all of you for your patience with us new comers. You're a smart cookie VickiSam! I'm doing something similar by keeping notes on where I find specific information on this board so I can return to it.

    In case you didn't know:
    You can also bookmark threads, or add them to your favorites. So all you need to do is click on it in the list, to find it again. This will be especially helpful after the surgery, when you might be in a fog from the anasthesia.