Feeling alone, family not helping
Anybody else having NO support from family and feeling alone? How do you handle it?
My husband got his diagnosis 3 weeks ago. He is a marathon runner, fit, in his 40's, with no prior medical issues. My parents tend to respond to bad news with fear and doom. When I informed them of the diagnosis, they immediately replied "OMG, how did this happen?" In the days that followed, my mother continued to inform me how she is so worried she cannot eat or sleep. She also expressed anger towards the medical professionals in my husband's family saying "They should be all over this, and I cannot believe they aren't doing more." What I don't need is my family blaming my husband's family for their perceived lack of involvement. My husband has the choice to pursue any option he feels is necessary - with or without the assistance of his family. My husband and I do not need my parents stirring up bad relationships, blaming people, or expressing how badly they are impacted by his medical condition.
My mother immediately called my sister with the news. My sister called me several hours later saying "Mom told me about Stephen. I can't believe it. Stephen is the healthiest person I know." How does she think this makes me feel? Am I supposed to explain the difficult fact of life that I am now faced with that sometimes 55it just happens?
My sister went on to explain during her conversation with our mother that mom was talking about Stephen being in chemotherapy treatments during the holidays and wouldn't have any hair. My sister said "I just told mom that Stephen doesn't have much hair anyway, so it wouldn't be a bit deal."
I am now just giving my family any news via email. I don't call on the phone. I give them just the facts, test results, and next steps, no emotional details.
I am scared and heartbroken. I pray every day to be the wife my husband needs. I focus my thoughts only on what his doctor's recommend, and I tell my husband I love him and that I think he is doing all the right things. I do not question "why", I do not blame anyone or anything. I've gone online to educate myself about his condition.
Nobody knows how awful I think my family is. I know they are clueless and probably hurt that I'm not calling them every day or breaking down crying. My family is just one more thing that we don't need to "manage"right now. Nobody gets it.
Comments
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Shock and grief
Try to remember the world as they knew it has changed forever and not for the good. Peace of mind comes at a price and it is gone. Once treatment is complete and successful, things will improve.
The truth is, only your husband goes through the treatment. You may be right beside him but he swallows those pills, takes that chemo needle and lies in that radiation machine alone. Your compassion is needed, your strength is required and tireless attention is what will keep him going.
This is a hard thing for everyone. No one knows the right thing to say to you. But they mean well.
G
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Family Distance themselves from me
My son has been battling Adrena Cortal Carcinoma Cancer since 2006. Recently my Son has taken the worse turn. He was recently in the Hospital and his wife decided to have Hospice involved and brought him home. I have adopted a child of my Brother's who could not get cleaned from drugs to take care of her. On and off my family watched her for me on different occasions. Recently I have asked for help to spend time with my Son and they have all said No. My sister called and told me that you should of known that it was going to come to this and you should of been prepared. I am sorry but where is compassion. I am so confused I feel like I have done something. I know in my heart that I am strong I just don't understand the way my family treats me. I feel so isolated, to top it off I am out of work and sttruggling and they all turned away from me. My brother called and yelled at me the other day and wanted to know why I got involved and have his daughter. Does he not know that if it wasen't for me she would be with another family at least I have brought her by so he could see her. They all know what I am going through with my Son why are they insentive to my feelings. I am lost.
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That is reality, thank youNoellesmom said:Shock and grief
Try to remember the world as they knew it has changed forever and not for the good. Peace of mind comes at a price and it is gone. Once treatment is complete and successful, things will improve.
The truth is, only your husband goes through the treatment. You may be right beside him but he swallows those pills, takes that chemo needle and lies in that radiation machine alone. Your compassion is needed, your strength is required and tireless attention is what will keep him going.
This is a hard thing for everyone. No one knows the right thing to say to you. But they mean well.
G
Thank you "Noellesmom". I was hoping you would reply. I've seen your responses to other posts, and I think your perspective is very grounded and sensible.
You are right that only my husband is going through this. As much as I think it is "our" situation, it is only his. His body, his life, his experience.
I like what you say about "compassion, strength, and tireless attention'. I am going to remember that.
I'm going on my own gut instincts, and what I know of his nature. I've asked him to tell me whatever he needs, but I've never really liked that question because figuring out what you need or communicating it isn't easy.
Yes, life has changed forever. My thoughts revolve around him being surrounded by the people and things he needs to bring this to the best outcome. I am hoping and praying that whatever minor things I can do to promote that, I know how to do it. (...I suppose not getting angry or intolerant at family members is a part of that??)
Anyway, thank you for taking the time to read this and for your reply. Also, btw, I think you must be a great support to whoever it is in your life working through their own treatment. Thank you.
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Trying to figure out otherskgree19 said:Family Distance themselves from me
My son has been battling Adrena Cortal Carcinoma Cancer since 2006. Recently my Son has taken the worse turn. He was recently in the Hospital and his wife decided to have Hospice involved and brought him home. I have adopted a child of my Brother's who could not get cleaned from drugs to take care of her. On and off my family watched her for me on different occasions. Recently I have asked for help to spend time with my Son and they have all said No. My sister called and told me that you should of known that it was going to come to this and you should of been prepared. I am sorry but where is compassion. I am so confused I feel like I have done something. I know in my heart that I am strong I just don't understand the way my family treats me. I feel so isolated, to top it off I am out of work and sttruggling and they all turned away from me. My brother called and yelled at me the other day and wanted to know why I got involved and have his daughter. Does he not know that if it wasen't for me she would be with another family at least I have brought her by so he could see her. They all know what I am going through with my Son why are they insentive to my feelings. I am lost.
is pointless. I'll never understand why other people do what they do, and sometimes it might be best to stop trying. Usually, people do not change. All we can do is change the way we react to them. Walk your own path and follow your heart on what is right. When drugs are involved, it's a slilppery slope for everyone around.
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New normalGingerMay said:That is reality, thank you
Thank you "Noellesmom". I was hoping you would reply. I've seen your responses to other posts, and I think your perspective is very grounded and sensible.
You are right that only my husband is going through this. As much as I think it is "our" situation, it is only his. His body, his life, his experience.
I like what you say about "compassion, strength, and tireless attention'. I am going to remember that.
I'm going on my own gut instincts, and what I know of his nature. I've asked him to tell me whatever he needs, but I've never really liked that question because figuring out what you need or communicating it isn't easy.
Yes, life has changed forever. My thoughts revolve around him being surrounded by the people and things he needs to bring this to the best outcome. I am hoping and praying that whatever minor things I can do to promote that, I know how to do it. (...I suppose not getting angry or intolerant at family members is a part of that??)
Anyway, thank you for taking the time to read this and for your reply. Also, btw, I think you must be a great support to whoever it is in your life working through their own treatment. Thank you.
It's a mantra you will see often on this site.
Embrace it and remember 'new' does not always mean 'bad'.
Hugs, Ginger. Hang in there.
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Family no help
I know how you feel. It is such a lonely and terrifying situation to be in. And those who are not involved in the day to day stuff have no idea what it is like to live it, 24/7. I wish we all had a central gathering place, to meet. The chat room is good, but a human would be better. We have no family to help. Only one daughter calls, once in a blue moon. My husband's cancer is aggressive and the palliative radiation and chemo do not seem to be helping much anymore. It seems like everyone has a suggestion, do this, do that, but have no idea about what it is really like. It makes me angry. Have made the decision to call in Palliative Care as I cannot do this alone anymore. My husband is in a bad way; we spent hours last night just crying...........
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I will hold that thoughtAlinoreandWilliam said:Family no help
I know how you feel. It is such a lonely and terrifying situation to be in. And those who are not involved in the day to day stuff have no idea what it is like to live it, 24/7. I wish we all had a central gathering place, to meet. The chat room is good, but a human would be better. We have no family to help. Only one daughter calls, once in a blue moon. My husband's cancer is aggressive and the palliative radiation and chemo do not seem to be helping much anymore. It seems like everyone has a suggestion, do this, do that, but have no idea about what it is really like. It makes me angry. Have made the decision to call in Palliative Care as I cannot do this alone anymore. My husband is in a bad way; we spent hours last night just crying...........
I will hold that thought it my mind of a place we could gather and meet. I see a place with soft comfortable chairs, windows with a view of nature, and a hot cup of coffee or tea. I feel like I'm on "sensory overload". When I go into a loud place, with bright light or a lot of people, it seems so loud it hurts my ears and I can't take it. When I talk to my family, it makes me feel worse. Sometimes, I go outside and stare blankly in the distance and sometimes I cry. I cry alone, in the car or in the shower. It helps for a while.
As a caretaker, this is larger than me. As much as I want to, I cannot carry it alone. It's larger than my husband too. I am glad you called on some outside help you thought was needed. I pray and it helps. These chat rooms are a good resource, and it helps keep me going but I feel so alone. I can't share my feelings with anyone. I don't want to be "cheered up" and I don't want to hear about someone's friend who had some unrelated illness and survived, etc. I feel guilty for thinking this is about me, when it is my husband going through it - not me.
But life as we knew it is over. I wonder if I will ever have any peace of mind again. As for my husband, I don't think he will. I just tell myself I don't have to get through the next 6 months today, all I need to do is get through this minute, this hour, this day. I can't even picture what 6 months from now might look like.
Bless you & your husband. I am sending you positive vibes and healing energy to help you through this day.
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Can't understand why family just deserts us
My hubby is battling liver cancer. It's been 8 months since diagnosis. He's had chemo and radiation. And more chemo after thanksgiving.
I have to start off by saying that my daughter and son in law are very supportive, very caring and help as much as they can. Which is much more than anyone else.
I'm especially upset that my own sister isn't supportive. And when she asks her obligatory question about how he's doing, I can hear and feel the insincerity.
I have a daughter in law that simply does not address it. Doesn't ask, doesn't care. Not her problem. But for years, he drove me to pick up HER children from school when I babysat.
And there are quite a few others. They all knew where to call when they needed mechanical help, or something fixed, an errand run, or a ride somewhere.
But now.....
Nobody calls or asks if we need anything, if they could help with something, if we'd like company, if we'd just like to talk. Nobody....nothing.
We are alone. (Aside from the two 20something yr. old's who have more concern and compassion than the older people.)
I thank the Lord above for those two!
So what's the deal?? Any ideas?? Are we branded, scarred? Don't get too close! It is contagious!!
We're people fighting for our lives and caregivers. We still need to be part of life and be loved and cared for.
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Some thoughts
I am sorry for what you and your husband are going through. Cancer has impacted every aspect of my life. I feel selfish saying that when it is my husband who has it, but my life is forever changed. One major way is in relationships.
For me, I believe most people are so absorbed in their own life that they are unable to tune-in to what we are going through. I also think some people find it uncomfortable to be in a place with me that is very challenging without a quick resolution. For others, they just don't know what to do or maybe they think it's not their "job". Really, just telling me they will keep me in their thoughts is OK, but most cannot even put in the effort to do that.
I have had friends tell me that "we never know when we could lose someone - they could drive off in a car and get in an accident so there's no certainty in life." Having cancer is nowhere near driving off in a car and there is no similarity. That way of thinking isn't even logical, but nobody gets it. I feel like I then have to take on the additional burden of always needing to take the high road, tolerate the stupid comments and tell myself that they mean well. That's one reason I am thankful I found this site.
I am glad that you have a couple people who have been a comfort to you. You are not alone in the way you feel. I will keep you and your husband in my thoughts and prayers.
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You're right
Your comment about always having to take the high road is so true. Very accurate.
It gets so tiring though. I don't mean to wallow in self pity. It just is difficult to wrap my head around at times.
Don't those people ever think we get lonely, or would love some lighthearted company? Something to make us feel "normal" for a little bit.
Apparently not.
I am very thankful to have found this board. Not that I wish this disease on anyone, but it's good to know I'm not alone in feeling this way.
Thank you for sharing your thoughts.
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I have posted elsewhere on
I have posted elsewhere on these forums of the lack of support that is surprising from some people you wouldn't expect.
Oh, what a long day this has been for me. At last the sun has started down and I shall get some rest. The Steelers won today, and I'm not in Cleveland.
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Sometimes...
Sometimes, it does seem as if everyone and anyone you figure "should" be interested in being helpful and encouraging has taken a scarper. I've had folks tell me that they figured everything was fine, because I was so upbeat (Yeah, it was hard not to react the way I wanted to that, because that would've run them off for sure). Others fall into the "I didn't know what to say / do, so I didn't say or offer to do anything" category. Then there are folks who can't face talking about what's going on, let alone being involved.
I've found that being specific about the sort of help I / we needed made a big difference. But it's hard to do, especially if you're not particularly skilled -- or have used up all your energy and don't have any left over -- in asking for things in a way that's not confrontational. Again, back to the "run them off for sure" reaction, which solves / solved nothing.
I decided that anyone who said "if there's anything I can do" got a response from me, and I'd tell them what I/we really needed to have done, could they help with that. I was so exhausted while I was being a caregiver that I had to write down what I needed, or I'd otherwise not be able to remember and just say, "Oh. OK."
And the conversation and company thing is good, too. I'd ask someone to bring over a sandwich from a deli or a six pack of soft drink. Usually, they could stick around for a little while and chat. I got some grocery shopping done that way, too (although after being stuck in the house for ages, I was more than just a little envious of those who could actually go OUT and shop).
Caregiving is tough, or at least it was for me. All the best...
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Many times people don't know
Many times people don't know how to react to sensitive topics such as this. My advice would be to explicitly tell them what you need from them. It will help both yourself and them. You do not need another thought occupying your mind. Stay strong - I wish you the best of luck and my prayers are with you and your family
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I suppose soHannaM said:Many times people don't know
Many times people don't know how to react to sensitive topics such as this. My advice would be to explicitly tell them what you need from them. It will help both yourself and them. You do not need another thought occupying your mind. Stay strong - I wish you the best of luck and my prayers are with you and your family
You are correct about people not knowing how to react to sensitive topics. I think if they see me acting normally and smiling, which is a coping mechanism for me, they say nothing. What I want to say to them is "Aren't you wondering about Stephen?... Aren't you concerned about his prognosis? ... Don't you wonder how difficult this is to face every day?" Of course getting angry at people who just don't get it doesn't help anyone.
I think your statement about being clear in telling people what I need from them is correct. I'm working on that.
I wish you the best too. Thank you for your kind advice and prayers.
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I know exactly how you feel!GingerMay said:I suppose so
You are correct about people not knowing how to react to sensitive topics. I think if they see me acting normally and smiling, which is a coping mechanism for me, they say nothing. What I want to say to them is "Aren't you wondering about Stephen?... Aren't you concerned about his prognosis? ... Don't you wonder how difficult this is to face every day?" Of course getting angry at people who just don't get it doesn't help anyone.
I think your statement about being clear in telling people what I need from them is correct. I'm working on that.
I wish you the best too. Thank you for your kind advice and prayers.
I know exactly how you feel! I was in your position once essentially begging (in my mind of course) others to just talk to me, help me, to just be normal. It was so frustrating and I got to the point where I just snapped. I think acting normal and smiling prevents others from bringing up Stephen and the situation. They see you smiling and think - "Oh great she's smiling and doing okay, let's not bring up Stephen right now." Little do they know how you're really feeling inside. I know it's difficult, but you will need to be explicit on what you want/need with/from others. It's really the best way without having others play the guessing game.
We are all here for you. Anything you need, just keep posting.
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Feeling Alone - Even Around Family
Ginger May - my heart went out to you when I read your post, as it hit so close to home. I want to share some thoughts from my perspective. Hopefully they are helpful - if nothing else, it might help to know that what you are experiencing is probably more common than you think.
My husband of 4 1/2 years (2nd marriage for both of us) was diagnosed with mantle cell lymphoma one year after we got married. MCL is rare and agressive
After being on a clinical trial for 3 years, he was told he was most likely going to be in remission for 5-8 years. Unfortuanately at his 3 month check, we found out the cancer was back and worse. Long story short, he had to go through very aggressive chemo followed by a stem cell bone marrow transplant. He is now 22 days post transplant and doing well! Between us, we have 6 adult children - 4 of which live around the US. I have a huge family in TX (we live in NY), and his family is small, but 5 hours away. We have a small very close knit group of friends that are local. Regarding the support, both physical and emotional, I've been both pleasantly surprised and dissapointed, as so many here have expressed. We've definitely heard the "if there is anything I can do" offers, as well as the "you've been in my thoughts and prayers". I feel guilty saying this, but when I hear that now, the words fall flat.
So here have been my observations, musings and reconciliations about the whole support thing:
Some people have completely surprised me (in a good way). My husband's son is a local attorney and without holding back, I will say, quite self involved normally. Guess what? He has BEEN THERE in every sense of the word. When Ralph was in the hospital for 2 weeks, his son came by every single day. When he heard that his Dad didn't have the concentration to read (they are both voracious readers), he bought a book with short interesting chapters, and stopped by to read to him. I could go on and on about all that he did, but all that to say, he came through in a big way. I try to focus on that and not on the people who have dissapointed. Another person who surprised me was my daughter who lives across the country. She has called or texted almost daily, and has been very thoughtful in knowing exactly what to say (instead of "let's look on the bright side" type comments...."wow, that sounds so difficult".) So proud of her.
Some people have not surprised me (but still in a good way) My youngest sister was 13 years old when she had to have a very involved spinal fusion followed by a full body cast for one year. Ever since that experience, she has been one of the most sensitive and caring people I've ever known. She just gets it. She has never forgotten what she went through, and even though she was so young at the time, has carried what she gained from that experience throughout her life and helped others along the way. She is SO faithful to call. My husbands good friend Dave had a heart valve replacement 10 years ago, and "gets it" as well. He too, knows what to say, and what not to say. My take away - I think most people have to have gone through difficulty to really get it. Not all.....but most.
I truly feel most people don't know what to say - They are afraid of saying the wrong thing - OR - they are assuming that it will make you feel bad if they bring it up, so they feel that avoiding the subject and staying positive will make you feel better. Unfortunately, they don't realize that it is probably making you feel worse. They just don't get it that YOUR reality is what you are living with on a daily basis. It is all-consuming, at times scary, at times frustrating, at times exhausting, etc, etc.... It makes you feel lonely and isolated when people avoid your reality. The honest truth is, in all of their good intentions, they truly, and honestly DON'T GET IT. Take away for me - Once I really understood this, it was much easier to not take their lack of support in the way that I need it personally.
The last category (this one is very personal and may not apply to all) As I said, I have a large family in TX. Three years ago, we lost my mother who had some short-term physical issues prior to her death. My sisters were all physically able to BE THERE for her. I was not. My husband was ill, and honestly, finances and my job were a real barrier to me being able to fly down. It came out over the months following that my sisters felt like I had not done my share to support Mom (long story, so I won't go into it). Fast forward....now that my husband is so sick...I feel like I am getting pay back. Aside from the youngest sister, I've had very little support from my otherwise close knit family. Weeks will pass with no phone call. We were in the hospital on Thanksgiving Day - no phone call. We did however, get a group text saying, "happy thanksgiving to all". Take away from this one??? I am still working on it. LIke I said, it is personal, but times like this may bring up old "stuff" and it is yet another opportunity to grow and to learn how to love unconditionally.
In summary - I feel like there are multiple reasons why we don't get the support we need. It really helps to be validated in that disappointment...that's where these boards are SO helpful. Beyond that, it helps to understand the possible WHY, and to, in our own way reconcile with that. For me? Once I am in a more stable place, I hope to start a local support group for caregivers specifically who have had a loved one go through the transplant process.
Blessings to you - also, I didn't mean to make this such a long post
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More commonkgauthier said:Feeling Alone - Even Around Family
Ginger May - my heart went out to you when I read your post, as it hit so close to home. I want to share some thoughts from my perspective. Hopefully they are helpful - if nothing else, it might help to know that what you are experiencing is probably more common than you think.
My husband of 4 1/2 years (2nd marriage for both of us) was diagnosed with mantle cell lymphoma one year after we got married. MCL is rare and agressive
After being on a clinical trial for 3 years, he was told he was most likely going to be in remission for 5-8 years. Unfortuanately at his 3 month check, we found out the cancer was back and worse. Long story short, he had to go through very aggressive chemo followed by a stem cell bone marrow transplant. He is now 22 days post transplant and doing well! Between us, we have 6 adult children - 4 of which live around the US. I have a huge family in TX (we live in NY), and his family is small, but 5 hours away. We have a small very close knit group of friends that are local. Regarding the support, both physical and emotional, I've been both pleasantly surprised and dissapointed, as so many here have expressed. We've definitely heard the "if there is anything I can do" offers, as well as the "you've been in my thoughts and prayers". I feel guilty saying this, but when I hear that now, the words fall flat.
So here have been my observations, musings and reconciliations about the whole support thing:
Some people have completely surprised me (in a good way). My husband's son is a local attorney and without holding back, I will say, quite self involved normally. Guess what? He has BEEN THERE in every sense of the word. When Ralph was in the hospital for 2 weeks, his son came by every single day. When he heard that his Dad didn't have the concentration to read (they are both voracious readers), he bought a book with short interesting chapters, and stopped by to read to him. I could go on and on about all that he did, but all that to say, he came through in a big way. I try to focus on that and not on the people who have dissapointed. Another person who surprised me was my daughter who lives across the country. She has called or texted almost daily, and has been very thoughtful in knowing exactly what to say (instead of "let's look on the bright side" type comments...."wow, that sounds so difficult".) So proud of her.
Some people have not surprised me (but still in a good way) My youngest sister was 13 years old when she had to have a very involved spinal fusion followed by a full body cast for one year. Ever since that experience, she has been one of the most sensitive and caring people I've ever known. She just gets it. She has never forgotten what she went through, and even though she was so young at the time, has carried what she gained from that experience throughout her life and helped others along the way. She is SO faithful to call. My husbands good friend Dave had a heart valve replacement 10 years ago, and "gets it" as well. He too, knows what to say, and what not to say. My take away - I think most people have to have gone through difficulty to really get it. Not all.....but most.
I truly feel most people don't know what to say - They are afraid of saying the wrong thing - OR - they are assuming that it will make you feel bad if they bring it up, so they feel that avoiding the subject and staying positive will make you feel better. Unfortunately, they don't realize that it is probably making you feel worse. They just don't get it that YOUR reality is what you are living with on a daily basis. It is all-consuming, at times scary, at times frustrating, at times exhausting, etc, etc.... It makes you feel lonely and isolated when people avoid your reality. The honest truth is, in all of their good intentions, they truly, and honestly DON'T GET IT. Take away for me - Once I really understood this, it was much easier to not take their lack of support in the way that I need it personally.
The last category (this one is very personal and may not apply to all) As I said, I have a large family in TX. Three years ago, we lost my mother who had some short-term physical issues prior to her death. My sisters were all physically able to BE THERE for her. I was not. My husband was ill, and honestly, finances and my job were a real barrier to me being able to fly down. It came out over the months following that my sisters felt like I had not done my share to support Mom (long story, so I won't go into it). Fast forward....now that my husband is so sick...I feel like I am getting pay back. Aside from the youngest sister, I've had very little support from my otherwise close knit family. Weeks will pass with no phone call. We were in the hospital on Thanksgiving Day - no phone call. We did however, get a group text saying, "happy thanksgiving to all". Take away from this one??? I am still working on it. LIke I said, it is personal, but times like this may bring up old "stuff" and it is yet another opportunity to grow and to learn how to love unconditionally.
In summary - I feel like there are multiple reasons why we don't get the support we need. It really helps to be validated in that disappointment...that's where these boards are SO helpful. Beyond that, it helps to understand the possible WHY, and to, in our own way reconcile with that. For me? Once I am in a more stable place, I hope to start a local support group for caregivers specifically who have had a loved one go through the transplant process.
Blessings to you - also, I didn't mean to make this such a long post
Thanks for your reply. It does help to know I'm not the only one feeling this way. I have seriously questioned some relationships I thought were otherwise fairly good. Perhaps everyone is doing their best, and some people really just don't know what to do and don't get it.
I agree with your insight. What is probably behind me feeling alone and isolated, and maybe the same for anyone else who feels this way, is that people just avoid the topic. This big huge thing that has consumed our lives and changed our future is the same thing that others seem blind to. I understand it is an awkward and sensitive topic so of course people probably prefer to just not mention it.
This diagnosis is scary, his cancer has a high rate of recurrence, and the future is uncertain. Getting my head around this to be able to face each day in the most productive way is exhausting. I find grace in odd places.... someone who smiles at me in the hallway at the doctor's office, or the helpful lady at the pharmacy. While in bed in the middle of the night a few nights ago my husband reached out and held my hand for a few minutes. Neither of us spoke a word, but I thought to myself "Oh, there's the man I've been in love with the last 20 years. He's still here."
It does help to be validated in how I feel so thank you for reading and thanks for your post. Bless you and your husband.
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Glad (sort of) that my feeling are not so unusual
i am 60 yrs old, not married, no kids, and not a large support structure. 2 months ago I was diagnosed with ovarian clear cell carcinoma (Stage 1C but of a high reoccurrent and aggressive cancer). As expressed so eloquently by Ginger May, I am surprised at the reactions of so many. The good - one friend, who from the time I said I had cancer, as done more than say, what can I do? She has come to appointments and driven me when I couldn't. She contacts me almost daily to see how I'm doing. Because I have always been alone and forced to be independent it is very hard for me to ask for help - it's easier for me to call a taxi or uber than to ask someone for help. Another friend, when I told her I had cancer, said "oh" and changed the subject. I get it...it's uncomfortable to hear the "C" word. But don't they pause to think about how we feel? Other friends say - let me know what I can do... but because I am so independent, and positive (I sound very strong and able), I just cant make myself ask for help. I am fortunate that I have the resources to pay for food deliveries or someone to come to the house, rather than impose on a friend. I am also lucky to have this one friend, but am fearful of becoming a burden to her. There is also a part of me that I guess is in denial as I want to prove I can still be as independent as I have been.
Family on the other hand seems to have disappeared. I have a brother with whom I've not spoken to in 6-7 years so he doesn't know and I'd rather not be in contact (long story). I have 20 some cousins some of whom I'm closer to than others. I called half to tell them my diagnosis. Only 1 has called in 2 months and my 94 yr old aunt called very briefly, but was clearly uncomfortable. In fairness, 2 sent fruit and a couple sent cards after I called them. None live within 1,000 miles of me so physically helping is not likely.
Im really trying to be positive, strong, optimistic but there are times like 2am when I can't sleep that I realize just how alone I am. These forums are so helpful, as I realize I'm not as alone as I think I am.
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Not alone, not unusualMaryVig said:Glad (sort of) that my feeling are not so unusual
i am 60 yrs old, not married, no kids, and not a large support structure. 2 months ago I was diagnosed with ovarian clear cell carcinoma (Stage 1C but of a high reoccurrent and aggressive cancer). As expressed so eloquently by Ginger May, I am surprised at the reactions of so many. The good - one friend, who from the time I said I had cancer, as done more than say, what can I do? She has come to appointments and driven me when I couldn't. She contacts me almost daily to see how I'm doing. Because I have always been alone and forced to be independent it is very hard for me to ask for help - it's easier for me to call a taxi or uber than to ask someone for help. Another friend, when I told her I had cancer, said "oh" and changed the subject. I get it...it's uncomfortable to hear the "C" word. But don't they pause to think about how we feel? Other friends say - let me know what I can do... but because I am so independent, and positive (I sound very strong and able), I just cant make myself ask for help. I am fortunate that I have the resources to pay for food deliveries or someone to come to the house, rather than impose on a friend. I am also lucky to have this one friend, but am fearful of becoming a burden to her. There is also a part of me that I guess is in denial as I want to prove I can still be as independent as I have been.
Family on the other hand seems to have disappeared. I have a brother with whom I've not spoken to in 6-7 years so he doesn't know and I'd rather not be in contact (long story). I have 20 some cousins some of whom I'm closer to than others. I called half to tell them my diagnosis. Only 1 has called in 2 months and my 94 yr old aunt called very briefly, but was clearly uncomfortable. In fairness, 2 sent fruit and a couple sent cards after I called them. None live within 1,000 miles of me so physically helping is not likely.
Im really trying to be positive, strong, optimistic but there are times like 2am when I can't sleep that I realize just how alone I am. These forums are so helpful, as I realize I'm not as alone as I think I am.
I'm sorry for what brought us both here, but I can say for sure that you are not alone. I agree it's hard in the middle of the night when everything is dark and still. I don't know why, but I find it sometimes helps me to get to a window and look up at the stars and moon (odd).
Blessings to you & all the best with your course of treatment.
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I can relate to feeling alone or lonelyMaryVig said:Glad (sort of) that my feeling are not so unusual
i am 60 yrs old, not married, no kids, and not a large support structure. 2 months ago I was diagnosed with ovarian clear cell carcinoma (Stage 1C but of a high reoccurrent and aggressive cancer). As expressed so eloquently by Ginger May, I am surprised at the reactions of so many. The good - one friend, who from the time I said I had cancer, as done more than say, what can I do? She has come to appointments and driven me when I couldn't. She contacts me almost daily to see how I'm doing. Because I have always been alone and forced to be independent it is very hard for me to ask for help - it's easier for me to call a taxi or uber than to ask someone for help. Another friend, when I told her I had cancer, said "oh" and changed the subject. I get it...it's uncomfortable to hear the "C" word. But don't they pause to think about how we feel? Other friends say - let me know what I can do... but because I am so independent, and positive (I sound very strong and able), I just cant make myself ask for help. I am fortunate that I have the resources to pay for food deliveries or someone to come to the house, rather than impose on a friend. I am also lucky to have this one friend, but am fearful of becoming a burden to her. There is also a part of me that I guess is in denial as I want to prove I can still be as independent as I have been.
Family on the other hand seems to have disappeared. I have a brother with whom I've not spoken to in 6-7 years so he doesn't know and I'd rather not be in contact (long story). I have 20 some cousins some of whom I'm closer to than others. I called half to tell them my diagnosis. Only 1 has called in 2 months and my 94 yr old aunt called very briefly, but was clearly uncomfortable. In fairness, 2 sent fruit and a couple sent cards after I called them. None live within 1,000 miles of me so physically helping is not likely.
Im really trying to be positive, strong, optimistic but there are times like 2am when I can't sleep that I realize just how alone I am. These forums are so helpful, as I realize I'm not as alone as I think I am.
My family was not supportive at all when I dealt with disability when I was younger. If it was convenient for them, they recognized my disabilities to keep me under their thumb, and otherwise they gave me no slack for not being "perfect." I learned to do things for myself -- even when I feel like I am dieing -- just because things have to be done.
My oncologist pushed me to ask for help. I'm having trouble finding a non-abusive home-aide, but found that some of the people I hardly knew will respond to small requests (a ride to the grocery store) and not so small requests (offering to care for my dogs when I am hospitalized) that allow me to live with a bit more grace and dignity.
I also feel very alone sometimes and also am afraid to reach out. I would be lonelier with an uncaring person in my home, than I am by myself.BTW, when old boyfriends or friends turn up and want to mooch off of you: asking them to take care of you while you have chemotherapy for breast cancer, or telling them that you are incontinent, are excellent ways of getting them to get lost without having to tell them to get lost! LOL!
The Cancer diagnosis is scary, a real roller-coaster ride, but in some ways it is just another hurdle in the bumpy path of life. I love the people that I meet who tell me they are breast cancer survivors and reach out to me with kindness, and tell me to "fight it -- stick with that chemotherapy no matter what!" -- because they sustain me and make it a bit easier to focus on what is important.Yes, I feel lonely -- which is why I came to this site. I just want to live with some calm and peace and dignity and get through this phase of my life as best I can. If you are feeling lonely, or sometimes overwhelmed, you are not alone.
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