Getting our life back

nicolemchouinard
nicolemchouinard Member Posts: 3
edited March 2014 in Caregivers #1
We found out a little over a month ago that my husband (32 y/o) has brain cancer. They found a brain tumor in late October, did surgery early November and discovered the cancer early December. This is all new to us. And considering the time line have not had much time to cope or deal with what is actually going on. Not knowing where to go, how to think, how to feel or what to say.

I now find myself struggling for time with my husband. His family is very close, which is great for support, but at the same time, they don't give us the space that we need. We have not really had much time to ourselves since the end of October. We have been married for three years now, and have no children. If anyone has any advice on how to cope with all of this, I would greatly appreciate it.

I just want our life back to somewhat of a normal beat and want to know how to do that.

Comments

  • ketziah35
    ketziah35 Member Posts: 1,145
    #2
    I am the blunt one
    I would tell them to call before they came over and establish family free weekends. I don't hvae cancer, my mom does, but I am an engineer with a rigorous schedule and hubby is one too. Once a month we have a lock in lock out weekend. By thursday we have bought all the movies and treats for the weekend. Friday after work we come in and turn off all phones and have a weekend slumber party. We always schedule something big to do once a month. The kicer is that the hubby has to be on board with telling them "not this weekend". My in laws are also from another country. They live in Fl we live in Ga. They have turned up several times by surprise for a weekebd. No call on Thurs saying we want to come for a visit. We find out they want to visit by opening the door. I talked to my husband and he talked to his parents. They are to give us 2 weeks notice now Unless it is a hurricane going on. Since I work this surprise visit was not acceptable. You are going to have to set ground rules and get him on board to say NO you need your cuDdle time and you do not have to be nasty about it just this isn't a good time can you come by next week.

    Since May, we haven't been able to spend a lot of time off doing anything together, because my mom was battling chemo and recovery. Next Year during the holidays we are trying to go out of the country. This is not going to go well with his parents and I do not care. I miss my sweetie and we deserve some quality time. We will see them so$e time before or after we get back. I order to make it unhurtful to them it is best to say something like we can't do this at this time, but we can do this at another time.
  • sarge57
    sarge57 Member Posts: 50 Member
    #3
    It's Tough to get it back

    Nicole

    I know totally what you are going through and how you are feeling, my heart prayers go out to you and your husband. I will give you a few ideas in what I have done in coping with the monster. First I will tell you my situation so you know what I have dealt with and I will be brief.
    - My wife and I are both 53, house paid, she is retired, kids are out of school 2 of the 3 are out of the house.
    - First week of Aug 2010 my wife started getting sharp pains in her low pelvis and back.
    - End of Aug after 4 visits to the hospital they finally admit because of the pain, 4 days
    later diagnosed with a rare cervical cancer.
    - Referred to cancer clinic early September she was already stage 4a, start radiation.
    - End of Sept admitted to hospital kidneys shutting down due to urinary blocked with
    tumor, early Oct cancer has spread to liver and lungs, chemo started.
    - Dec 23 advised cancer has spread to far chemo drug changed they estimate she has
    between 3 and 6 months.

    Life is a roller coaster once this happens, when the diagnoses first gets out to everyone there is a great support network, eventually it starts to fade off and you will start to get more time to yourselves. He has had surgery on the tumor do mind me asking what is the prognosis and did they get it all. My wife and I have gone through some struggles we found each other getting distant and we have always been very close with each other. It would be helpful to get some sort councelling for yourself alone and together if your husband is willing. I meet with the social worker at the cancer center twice a month, and it does help in dealing with your feelings and frustrations and how to deal with certain difficult situations.

    I know how you feel in wanting your life back we have been saying that for 6 months but is not going to happen, hopefully it will for you. They experts tell you take one day at a time and not to get to far ahead, it is hard to but that is how you have to deal with things. As far as getting more time take one day as it comes and try to get him to agree to put even an hour a day aside for the two of you. Is he able to get around, how is his energy level is active at all. Maybe try and get him once a day for a walk or a drive, that is what I tried it worked for a while but any longer.

    I hope some of this is helpful please feel free to keep in touch, being a caregiver is not easy no matter what the age.

    All the best
    John
  • Carrie King
    Carrie King Member Posts: 48
    #4
    We found out in March that
    We found out in March that my husband had a tumor after three months of marriage.

    My husband is also very close with his family and they live 3 hrs away.

    We also have a very supportive church group of friends. However, after 5 major brain surgeries we have learned a few things.

    It is okay to accept help as this as "helps" our friends, however it is also okay to decline visitors until the patient is ready for them.

    Last month when it was time for the 6th surgery in 9 months, we only told a few close friends. My husband & myself got the BEST rest and recovery time in the hospital and at home that we EVER had. We got to rest and not entertain visitors during the time we both needed it most.

    Yes, a few were "upset" that they werent told ahead of time, however that is the patients right for privacy. We have learned the hard way that people don't need to know EVERY detail.

    We are very grateful for support and prayers and encouragement but we have learned boundaries do need to be placed.

    Praying for you all.
  • Ron773
    Ron773 Member Posts: 2
    #5
    I've found that people start
    I've found that people start making assumptions when cancer rears its ugly head. Only from the best intentions to be people want to help and be around my husband--in my experience. I've become somewhat of a gatekeeper, but checking with my hubby when I'm not sure how he's feeling about visitors. Saying "not today" is fully acceptable as his wife and caregiver. And taking the time to explain your reasons while explaining that their visits are important for them and for him.

    Best of luck. I'm sure it will work out.
  • nicolemchouinard
    nicolemchouinard Member Posts: 3
    #6
    A huge thank you!
    Thank you to everyone for their advice. I will filter them all into our day to day. My husband did have brain surgery in November. The doctors have said that they believe to have removed the entire tumor, but need to take the steps of radiation and chemo because there may have been some cells that are still lingering from the surgery. And those cells would carry the cancer.
    Having to go through this so early on in our marriage and at a young age is not easy. Coping with stress and possible medical conditions is not something that is taught in school.
    Does anyone know of an online Christian support group for caregivers. I really would like to get plugged with people that are going through the same thing that I am and around the same age. It is just hard to find a support group that I can trust and I don't know where to begin.
  • ketziah35
    ketziah35 Member Posts: 1,145
    #7
    nicolemchouinard said:

    A huge thank you!
    Thank you to everyone for their advice. I will filter them all into our day to day. My husband did have brain surgery in November. The doctors have said that they believe to have removed the entire tumor, but need to take the steps of radiation and chemo because there may have been some cells that are still lingering from the surgery. And those cells would carry the cancer.
    Having to go through this so early on in our marriage and at a young age is not easy. Coping with stress and possible medical conditions is not something that is taught in school.
    Does anyone know of an online Christian support group for caregivers. I really would like to get plugged with people that are going through the same thing that I am and around the same age. It is just hard to find a support group that I can trust and I don't know where to begin.

    There is a spiritual and
    There is a spiritual and meditation discussion group. I would contact the ACS for support groups in your area as well as within your own spiritual community.
  • hope0310
    hope0310 Member Posts: 320
    #8
    ketziah35 said:

    There is a spiritual and
    There is a spiritual and meditation discussion group. I would contact the ACS for support groups in your area as well as within your own spiritual community.

    I was a smotherer!!!
    Guilty!!!!

    I am sure in the beginning that my mom and stepdad thought.....GO AWAY ALREADY!!! But they did not and I did not!! But I did think that it was probably too much on them at times.

    You have been given some good advise and I am sure you will find your way.

    My best to you and your husband.

    Elysia

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