Caregiving

lisaonthenet
lisaonthenet Member Posts: 69
Hello,

I am caregiving my partner who has mets thyroid cancer. Any other caregivers out here?

Lisa

Comments

  • pipwe1
    pipwe1 Member Posts: 53
    I was a caregiver
    I was a caregiver until I lost my partner on August 4th 2009 to ovarian cancer.... I keep checking this site but there aren't many of us out here... How are things going Lisa? Do you have much support? Im glad you came here

    Wendy
  • lisaonthenet
    lisaonthenet Member Posts: 69
    pipwe1 said:

    I was a caregiver
    I was a caregiver until I lost my partner on August 4th 2009 to ovarian cancer.... I keep checking this site but there aren't many of us out here... How are things going Lisa? Do you have much support? Im glad you came here

    Wendy

    Hi Wendy,

    Thanks for your response. I'm so very sorry to hear about your loss. I can't imagine. I've been searching for some resources on caregiving as it relates to lesbians but haven't come across much.

    To be honest, things are tough. Support wise I have family and a few friends who know what's going on but it doesn't seem enough. I've found that I feel like withdrawing a lot so when friends do call, often I don't answer. Sounds crazy but sometimes it's too much. I've been trying to find other ways to 'deal' like going to the gym, writing, drawing again...

    Any suggestions? Where are you? I'm in Ohio.

    Lisa
  • pipwe1
    pipwe1 Member Posts: 53

    Hi Wendy,

    Thanks for your response. I'm so very sorry to hear about your loss. I can't imagine. I've been searching for some resources on caregiving as it relates to lesbians but haven't come across much.

    To be honest, things are tough. Support wise I have family and a few friends who know what's going on but it doesn't seem enough. I've found that I feel like withdrawing a lot so when friends do call, often I don't answer. Sounds crazy but sometimes it's too much. I've been trying to find other ways to 'deal' like going to the gym, writing, drawing again...

    Any suggestions? Where are you? I'm in Ohio.

    Lisa

    Lisa
    Hi Lisa,

    We were together almost 11 years.. she died 10 days before our anniversary. I know what you mean about withdrawing... I often don't answer the phone anymore.. Coming here helps, talking to others, sharing experiences. I'm in New York. I don't know what stage you guys are in but in the end I got the help of Calvary Hospice and kept Regina at home and to be honest at the time they were great and now they are my life saver. The social worker still comes to see me once and week and I can text/call her anytime I want. She's been great getting me though this tough time.

    I'm so glad that you posted on this site because I have been posting on the emotional support site and everyone there has lost their husband/wife its not the same. I don't even mention Regina's name on there i just say my partner so not to offend anyone.. I was on a different cancer site and when i mentioned her name most stopped talking to me so I came here instead.

    I journal a lot now.. write my feelings down.. especially at night when I'm alone and others are sleeping..

    Keep in touch, I will keep you both in my prayers

    Wendy
  • lisaonthenet
    lisaonthenet Member Posts: 69
    pipwe1 said:

    Lisa
    Hi Lisa,

    We were together almost 11 years.. she died 10 days before our anniversary. I know what you mean about withdrawing... I often don't answer the phone anymore.. Coming here helps, talking to others, sharing experiences. I'm in New York. I don't know what stage you guys are in but in the end I got the help of Calvary Hospice and kept Regina at home and to be honest at the time they were great and now they are my life saver. The social worker still comes to see me once and week and I can text/call her anytime I want. She's been great getting me though this tough time.

    I'm so glad that you posted on this site because I have been posting on the emotional support site and everyone there has lost their husband/wife its not the same. I don't even mention Regina's name on there i just say my partner so not to offend anyone.. I was on a different cancer site and when i mentioned her name most stopped talking to me so I came here instead.

    I journal a lot now.. write my feelings down.. especially at night when I'm alone and others are sleeping..

    Keep in touch, I will keep you both in my prayers

    Wendy

    Can't imagine
    Hi Wendy,

    You and Regina were together a long time. I'm so very sorry your time with her was cut short. And to lose her 10 days before your anniversary...Again, I'm very sorry.

    Although I'm sorry you know what I mean about withdrawing, it's also nice to know someone else understands. I think Kelly understands and she sees me do it but at the same time she wants me to have folks to talk to.

    Not sure what stage we're in either? Kelly's fighting with chemo and most recently radiation to her hip. The thyroid cancer has metastasized to her lungs, bone, kidney, liver, adrenal glad and spleen. She's fighting. She's working full-time. She's amazing, a trooper and inspiration. I'm so scare of losing her.

    That's wonderful that Calvary Hospice was good to you both and still remains active as part of your support system. When I pushed Kelly's doctors about how long she might have, they told us 6 months and it's been over 1 year, so we have a lot to celebrate. I pushed them because they kept telling us she's getting worse and we needed to get 'affairs' in order. I feel like they pushed me into asking. Kelly's cancer started getting more aggressive a little over one year ago and it's been a tough road since.

    I'm glad you've mentioned Regina's name here and happy I helped with that. It can be difficult since there aren't many places for us where we feel comfortable. I've been looking and am glad I found this Web site and folks to talk to and will keep looking. I'm considering starting a caregiver support group in our area and already have a Web site that provides link to local resources. In a way it helps me and I feel like I'm giving back.

    Journaling is a good thing. I write poems and 'free write'. I've been drawing and hope to paint again soon. Will keep in touch. Feel free to email anytime too.

    I'll also keep you in my thoughts,
    Lisa
  • pipwe1
    pipwe1 Member Posts: 53

    Can't imagine
    Hi Wendy,

    You and Regina were together a long time. I'm so very sorry your time with her was cut short. And to lose her 10 days before your anniversary...Again, I'm very sorry.

    Although I'm sorry you know what I mean about withdrawing, it's also nice to know someone else understands. I think Kelly understands and she sees me do it but at the same time she wants me to have folks to talk to.

    Not sure what stage we're in either? Kelly's fighting with chemo and most recently radiation to her hip. The thyroid cancer has metastasized to her lungs, bone, kidney, liver, adrenal glad and spleen. She's fighting. She's working full-time. She's amazing, a trooper and inspiration. I'm so scare of losing her.

    That's wonderful that Calvary Hospice was good to you both and still remains active as part of your support system. When I pushed Kelly's doctors about how long she might have, they told us 6 months and it's been over 1 year, so we have a lot to celebrate. I pushed them because they kept telling us she's getting worse and we needed to get 'affairs' in order. I feel like they pushed me into asking. Kelly's cancer started getting more aggressive a little over one year ago and it's been a tough road since.

    I'm glad you've mentioned Regina's name here and happy I helped with that. It can be difficult since there aren't many places for us where we feel comfortable. I've been looking and am glad I found this Web site and folks to talk to and will keep looking. I'm considering starting a caregiver support group in our area and already have a Web site that provides link to local resources. In a way it helps me and I feel like I'm giving back.

    Journaling is a good thing. I write poems and 'free write'. I've been drawing and hope to paint again soon. Will keep in touch. Feel free to email anytime too.

    I'll also keep you in my thoughts,
    Lisa

    Don't be scared
    Lisa

    Don't be scared just love her and yourself....

    Wendy
  • lisaonthenet
    lisaonthenet Member Posts: 69
    pipwe1 said:

    Don't be scared
    Lisa

    Don't be scared just love her and yourself....

    Wendy

    Scared...
    Wendy,

    I do and will continue to love her but I'm still more scared than I've ever been in my life...

    Lisa
  • whistlestopgirl
    whistlestopgirl Member Posts: 28

    Scared...
    Wendy,

    I do and will continue to love her but I'm still more scared than I've ever been in my life...

    Lisa

    I am glad I found your post
    Lisa,

    I know how you feel since I too am scared of losing my partner of 10 years. She has been diagnosed with overian cancer. We have been fighting it together for almost one year with no local support at all. When we finally felt we had the cancer beaten it was discovered to have come back. All the tests had lead us to believe she was cancer free however a routine surgery that had nothing to do with her cancer uncovered other cancer that had spread to a different area. So after all she has been through including radiation and chemo she will have to start from the beginning again this January. Needless to say it has hit us both hard and we have no support where we live. There is no glbt community here. If there are others here they are very closeted since we are in the deep south. Also her family is very narrow minded and hateful about our relationship which only makes things twice as bad for me and for her. There are realy very limited cancer support groups here and we would definitly not be accepted in them anyway so I have been looking online to find anything or anywhere to connect with others going through similiar situations. So Lisa know you are not alone out there and Wendy I am truly sorry for your loss and I am glad at least you have the social worker to connect to. Some days I don't know how to stay strong for my partner, but I somehow find a way since she has enough to worry about with fighting for her life and dealing with her hateful family. Anyway please keep this thread going so when the days come as they do when I need more strengh to go on I have somewhere to look and see I am not all alone.

    Thanks for listening
  • lisaonthenet
    lisaonthenet Member Posts: 69

    I am glad I found your post
    Lisa,

    I know how you feel since I too am scared of losing my partner of 10 years. She has been diagnosed with overian cancer. We have been fighting it together for almost one year with no local support at all. When we finally felt we had the cancer beaten it was discovered to have come back. All the tests had lead us to believe she was cancer free however a routine surgery that had nothing to do with her cancer uncovered other cancer that had spread to a different area. So after all she has been through including radiation and chemo she will have to start from the beginning again this January. Needless to say it has hit us both hard and we have no support where we live. There is no glbt community here. If there are others here they are very closeted since we are in the deep south. Also her family is very narrow minded and hateful about our relationship which only makes things twice as bad for me and for her. There are realy very limited cancer support groups here and we would definitly not be accepted in them anyway so I have been looking online to find anything or anywhere to connect with others going through similiar situations. So Lisa know you are not alone out there and Wendy I am truly sorry for your loss and I am glad at least you have the social worker to connect to. Some days I don't know how to stay strong for my partner, but I somehow find a way since she has enough to worry about with fighting for her life and dealing with her hateful family. Anyway please keep this thread going so when the days come as they do when I need more strengh to go on I have somewhere to look and see I am not all alone.

    Thanks for listening

    Hi whistlestopgirl
    Hi. It was good to see your post, only because it helps to not feel so alone. Kelly and I will celebrate 10 years next October (married) but next June (when we met in person) so congrats on your 10 years together! You both must be very strong to be fighting this together and will little local support. When Kelly was diagnosed in 2003 it was slow growing and we thought things were okay. But, in 2006ish things began changing and her cancer became more aggressive. It has now spread to several different organs and her fight has changed. So I understand how you feel thinking you'd beat it but having it come back again. I understand how hard it's hit you. Most recently, we learned Kelly's cancer spread to her hip and she's undergone 15 radiation treatments and the pain has been incredibly hard on her. She's amazing though. She keeps fighting, working full time and working through this. It must be tough for you and your partner without community and her family being narrow minded; I'm sorry for that. There's not much here in the way of local support for us either so I started looking online after someone suggested it. It is hard to stay strong for each other and especially hard when your person is fighting the fight of her life. It's been tough recently for Kelly and I. It's taking its toll on us and our relationship I think. We haven't had a 'break' or vacation or get away in a couple of years and it's been a tough couple of years but we're strong. This has all made me very angry and sad, her cancer, the toll it's taken on her, her pain and suffering, etc...and some days it's hard for me to now let that show. Feel free to email anytime.

    Thanks for listening and be sure to keep loving one another,
    Lisa
  • pipwe1
    pipwe1 Member Posts: 53

    I am glad I found your post
    Lisa,

    I know how you feel since I too am scared of losing my partner of 10 years. She has been diagnosed with overian cancer. We have been fighting it together for almost one year with no local support at all. When we finally felt we had the cancer beaten it was discovered to have come back. All the tests had lead us to believe she was cancer free however a routine surgery that had nothing to do with her cancer uncovered other cancer that had spread to a different area. So after all she has been through including radiation and chemo she will have to start from the beginning again this January. Needless to say it has hit us both hard and we have no support where we live. There is no glbt community here. If there are others here they are very closeted since we are in the deep south. Also her family is very narrow minded and hateful about our relationship which only makes things twice as bad for me and for her. There are realy very limited cancer support groups here and we would definitly not be accepted in them anyway so I have been looking online to find anything or anywhere to connect with others going through similiar situations. So Lisa know you are not alone out there and Wendy I am truly sorry for your loss and I am glad at least you have the social worker to connect to. Some days I don't know how to stay strong for my partner, but I somehow find a way since she has enough to worry about with fighting for her life and dealing with her hateful family. Anyway please keep this thread going so when the days come as they do when I need more strengh to go on I have somewhere to look and see I am not all alone.

    Thanks for listening

    whistletopgirl and lisa
    I'm glad you came here... I am here for both you and Lisa, I have been exactly where you are are now so I hope I can be of some comfort. I will check here daily so always know you are not alone. The social worker has been my lifesaver.. she will never know how much she has done for me in the last few months and I hope that you can both find someone as good as she is to support you through these hard times.

    Wendy
  • whistlestopgirl
    whistlestopgirl Member Posts: 28
    pipwe1 said:

    whistletopgirl and lisa
    I'm glad you came here... I am here for both you and Lisa, I have been exactly where you are are now so I hope I can be of some comfort. I will check here daily so always know you are not alone. The social worker has been my lifesaver.. she will never know how much she has done for me in the last few months and I hope that you can both find someone as good as she is to support you through these hard times.

    Wendy

    It was so nice to see both of your posts this morning
    Dear Lisa and Wendy,

    You don't know how glad I was to see both of your replies this morning. There is usually not alot of new emails on this whole lesbian board so it is good to find two other people at least who are on and active. Since right now it is such a lonely feeling fighting this horrible disease without any support. My partner is my best friend as well and we usually share all our thoughts and feelings, but sometimes with this fight against cancer it is hard to share my feelings since she has so much on her plate to fight for her very life. She is always so strong and upbeat for the most part and she is still working full time which I feel is a true life saver for her. Anyway some of my feelings I just can't share with her right now so it is good to have somewhere to go and talk about things. Lisa thank you for the invite to email you. I will do that real soon since a public post is not always the best place to talk about everything. I hope you and Wendy don't mind, but I have added you both to my friends list and I hope to be there for both of you as much as you can be for me. During times like this it is always good to talk with others who are going through the same type of things together. I will continue to look forward to your posts and I will hope to also connect with you through emails in the near future. Holidays are always stressful especially in our situation with a family like hers in the picture, but this year it will even be harder to deal with then ever. I am thankful I found this site and I am thankful for your response to my post.

    Sincerely,
    whistlestopgirl
  • tjhay
    tjhay Member Posts: 655

    It was so nice to see both of your posts this morning
    Dear Lisa and Wendy,

    You don't know how glad I was to see both of your replies this morning. There is usually not alot of new emails on this whole lesbian board so it is good to find two other people at least who are on and active. Since right now it is such a lonely feeling fighting this horrible disease without any support. My partner is my best friend as well and we usually share all our thoughts and feelings, but sometimes with this fight against cancer it is hard to share my feelings since she has so much on her plate to fight for her very life. She is always so strong and upbeat for the most part and she is still working full time which I feel is a true life saver for her. Anyway some of my feelings I just can't share with her right now so it is good to have somewhere to go and talk about things. Lisa thank you for the invite to email you. I will do that real soon since a public post is not always the best place to talk about everything. I hope you and Wendy don't mind, but I have added you both to my friends list and I hope to be there for both of you as much as you can be for me. During times like this it is always good to talk with others who are going through the same type of things together. I will continue to look forward to your posts and I will hope to also connect with you through emails in the near future. Holidays are always stressful especially in our situation with a family like hers in the picture, but this year it will even be harder to deal with then ever. I am thankful I found this site and I am thankful for your response to my post.

    Sincerely,
    whistlestopgirl

    Wendy, Lisa, and
    Wendy, Lisa, and Whistlestopgirl
    I am a survivor of breast cancer, I can not even begin to tell you how much the support and love of your girlfriend means. I can tell you that we look at you as heros, and that we know how incredibly hard our fight would be without you.
    If you ever need a friend I am here for you.
    tj
  • lisaonthenet
    lisaonthenet Member Posts: 69
    pipwe1 said:

    whistletopgirl and lisa
    I'm glad you came here... I am here for both you and Lisa, I have been exactly where you are are now so I hope I can be of some comfort. I will check here daily so always know you are not alone. The social worker has been my lifesaver.. she will never know how much she has done for me in the last few months and I hope that you can both find someone as good as she is to support you through these hard times.

    Wendy

    Wendy
    Hi Wendy,

    We can all be here for one another. Sounds good to me.

    I'm glad the social worker is helping you out. I have found someone to talk to but am always on the lookout for more ways to help us/me.

    Lisa
  • lisaonthenet
    lisaonthenet Member Posts: 69

    It was so nice to see both of your posts this morning
    Dear Lisa and Wendy,

    You don't know how glad I was to see both of your replies this morning. There is usually not alot of new emails on this whole lesbian board so it is good to find two other people at least who are on and active. Since right now it is such a lonely feeling fighting this horrible disease without any support. My partner is my best friend as well and we usually share all our thoughts and feelings, but sometimes with this fight against cancer it is hard to share my feelings since she has so much on her plate to fight for her very life. She is always so strong and upbeat for the most part and she is still working full time which I feel is a true life saver for her. Anyway some of my feelings I just can't share with her right now so it is good to have somewhere to go and talk about things. Lisa thank you for the invite to email you. I will do that real soon since a public post is not always the best place to talk about everything. I hope you and Wendy don't mind, but I have added you both to my friends list and I hope to be there for both of you as much as you can be for me. During times like this it is always good to talk with others who are going through the same type of things together. I will continue to look forward to your posts and I will hope to also connect with you through emails in the near future. Holidays are always stressful especially in our situation with a family like hers in the picture, but this year it will even be harder to deal with then ever. I am thankful I found this site and I am thankful for your response to my post.

    Sincerely,
    whistlestopgirl

    Hi. I can understand how nice it is to share experiences here and how it helps you not feel so alone in this battle.

    I imagine you are feeling very alone. Are your friends able to be there for you both? I know I've done my share of withdrawing even though others are reaching out to me/us.

    It can be hard to share feelings sometimes when you know your partner is having a tough time and dealing in her own way. I struggle with this too. But, we got to a point, not to say we don't digress, where we say to each other that we must be open and honest through this and share our feelings. This helps sometimes but I don't think we do share all our feelings all the time. It's too scary.

    My partner Kelly is also strong, an inspiration and continues to work full-time. She's amazing and I admire her. Like you mentioned, I believe this helps her and she's said that working full-time helps her so I've been so glad and thankful she's been able to do this.

    We just found out that Kelly's cancer has most likely now gone to her other leg, where she broke her femur a little over one year ago so we're in shock right now, sad, angry...a range of emotions.

    Keep posting and never feel alone,
    Lisa
  • lisaonthenet
    lisaonthenet Member Posts: 69
    tjhay said:

    Wendy, Lisa, and
    Wendy, Lisa, and Whistlestopgirl
    I am a survivor of breast cancer, I can not even begin to tell you how much the support and love of your girlfriend means. I can tell you that we look at you as heros, and that we know how incredibly hard our fight would be without you.
    If you ever need a friend I am here for you.
    tj

    Hi tj,

    Congratulations to you being a survivor. That's very admirable! It's very nice to hear your words from your perspective, as a survivor. Thank you.

    I know me being here helps Kelly but I also know sometimes I drive her crazy with my emotions, anger and irritability mostly, when she's hurting and in pain and we're scare of losing her.

    Lisa
  • whistlestopgirl
    whistlestopgirl Member Posts: 28
    tjhay said:

    Wendy, Lisa, and
    Wendy, Lisa, and Whistlestopgirl
    I am a survivor of breast cancer, I can not even begin to tell you how much the support and love of your girlfriend means. I can tell you that we look at you as heros, and that we know how incredibly hard our fight would be without you.
    If you ever need a friend I am here for you.
    tj

    Thanks for your kind words
    tj,

    I appreciate hearing your kind words. It is good to get the perspective of a cancer survivor. I feel my girlfriend is the true hero. Her strength to fight this disease has helped her month after month. I think surviving is part medical, but also part mental and spiritual as well. Her spirit has been her strength even when she was in great pain. Anyway thanks again for your kind words. I think we have a good and active thread going on in this caregiving board and I hope it keeps going and growing. It is sad to see so many of the subjects under lesbian topics not having any posts to them for years. I hope this will stay active and those of us fighting this disease whether lesbian caregiver or survivor continue to have someplace to go and connect with others in our situation.

    PS....Lisa check your email