Having trouble giving up independence--Follow up with Onco
I fell a couple of weeks ago and told my son. Then he went out of the country for 3 weeks and set up with my married son, ex-husband, and sisters to have someone here with me for the full time he is gone. I appreciate this. My son and his wife, went home last night, my ex stayed last night and tonight, then 2 sisters will cover the last 10 days from out of state. I really do appreciate all of this and know that I need help during chemo weeks. But I do have 12 good days a month, or more and I want to be able to live while I am alive.
I am getting the feeling that they are now thinking that I shouldn't drive at all. I don't drive when I am not well, and I dont drive when I have the neuropothy. Only on my good days.
I know how worried they are, and I really do appreciate all they do, but I am having a hard time giving up my independence when I still feel like there is so much that I can do.
I am even struggling with the idea of getting a wheelchair. But without one, I am limited as the tumors in my spine and legs limit how long I can walk. I have agreed to check out wheelchairs but I am so afraid that once I start with the chair, I will have to use it all the time.
It is so damn hard each time another part of me is being taken away by this f'n disease. In the last month, I gave up my condo it was 3 story, I couldn't do the stairs, couldn't sell it it was too upside down in this market, and couldn't afford it on disability. I had to let others move me (I have always been so independent), a sister came and unpacked and set up all of my stuff, while I was in bed for 3 days. I am having a rough day, then A good friend just called, her husband is losing his battle with Melanoma, it should be today or tomorrow. Already feel sad, then was veto'ed on going to the post office! I have been sitting here like a crybaby today, and the funny thing is I hate going to the post office and standing in line!!!
Tried to explain the issue behind all of this to my ex and son, but they have it in their mind that they are taking care of me and protecting me, they are so afraid they are going to lose me! But I am feeling handcuffed and smothered with all the love!
Thanks for letting me vent. Carol
Comments
-
Oh, Carol, my heart goes out to you
For me, the loss of independence also was a loss of control of my life. However, I decided to make peace with that and take any help that was offered, while still doing or at least trying to do the things that I could. As you know, your loved ones mean well--they want to help in any way they can. Maybe if you could try talking to them either individually or as a group about your feelings of loss of independence and control and how you need just a little to make you feel better. Be specific--tell them about what you would like to do on your own on your good days, and what you'd be greatful to have help with.
Don't feel like a "cry baby." You're going through a lot right now--and it's so hard. But I can tell you're a survivor with a strong spirit. I hope you get to a place soon where you'll find peace.
You're on my prayer list.
Hugs, Renee0 -
Dear Carol -- I understand
Dear Carol -- I understand your frustrations. You are probably so used to sheltering for others, and taking care of yourself. But you know something? I think it's OK for someone else to shelter you! As we both know their intentions are out of care and love.
If you are feeling too overwhelmed by the attention, maybe talk to them to set up a schedule/plan so that they are there for you many times, while allowing you to have some time on your own. I understand about their worry with the driving. Personally, I would be too if it was my mother. I am 33, and I am just putting myself in their shoes too - sorry if I am not 100% on your side, although I agree with some of the things you are concerned about.
Please speak to them about your emotion, but also be open-minded about their concerns. They love you very much, and they want to make sure you have help when and if is needed. They can still be there with you, but perhaps a planned schedule will be more comfortable and appropriate for all of you. Just a thought. I am sure other sisters here will give you their perspectives.
You are loved.0 -
Anything but
Carol, you are anything but a "crybaby". You are dealing with an incredible amount and are striving to remain as independent as possible. Actually, I think your attitude is admirable. You are not giving up and I hope you never do. I can only imagine how frustrated and helpless you feel at times. I know it must be hard not to be down on yourself, but try to remember how incredibly strong you really are. You are not dealing with a stuffy nose here, you are fighting a horrible disease. Keep fighting and stay strong. You inspire others.
Clementine
P.S. More smothering love being sent your way from me!0 -
Carolmissrenee said:Oh, Carol, my heart goes out to you
For me, the loss of independence also was a loss of control of my life. However, I decided to make peace with that and take any help that was offered, while still doing or at least trying to do the things that I could. As you know, your loved ones mean well--they want to help in any way they can. Maybe if you could try talking to them either individually or as a group about your feelings of loss of independence and control and how you need just a little to make you feel better. Be specific--tell them about what you would like to do on your own on your good days, and what you'd be greatful to have help with.
Don't feel like a "cry baby." You're going through a lot right now--and it's so hard. But I can tell you're a survivor with a strong spirit. I hope you get to a place soon where you'll find peace.
You're on my prayer list.
Hugs, Renee
Being smothered with love is a good thing Carol, but, I totally understand how you feel like you can't even breathe on your own, all alone. You certainly have a wonderful family to help you so much and to make sure everything is comfortable for you and that you are safe. They so love you!
And, you are not a cry baby, just like the other sisters said. You just need some space and some independence. Completely understandable!
I would think the best approach is to tell each and every one of them, or, write a letter telling them how you feel and give each a copy. Some people find it easier to write it down, than to say it.
Whatever you do, please keep posting here to let us know how you are. My prayers are with you Carol!
♠♣ Love, Susie ♠♣0 -
Double postmissrenee said:Oh, Carol, my heart goes out to you
For me, the loss of independence also was a loss of control of my life. However, I decided to make peace with that and take any help that was offered, while still doing or at least trying to do the things that I could. As you know, your loved ones mean well--they want to help in any way they can. Maybe if you could try talking to them either individually or as a group about your feelings of loss of independence and control and how you need just a little to make you feel better. Be specific--tell them about what you would like to do on your own on your good days, and what you'd be greatful to have help with.
Don't feel like a "cry baby." You're going through a lot right now--and it's so hard. But I can tell you're a survivor with a strong spirit. I hope you get to a place soon where you'll find peace.
You're on my prayer list.
Hugs, Renee
.0 -
scooter or wheelchair
Carol,
I just want to add that if you get a scooter or a wheelchair it may keep you more active. You won't have to give up going places because you may get too tired. My aunt uses a scooter and a walker for a neurological issue she has. It has kept her able to do stuff on her own.
As far as the family is concerned, I have been on both sides so I think I am a little more willing to let people do what they want to help. Even though sometimes it actually creates more work for me......
Cindy0 -
You just have so much toClementine_P said:Anything but
Carol, you are anything but a "crybaby". You are dealing with an incredible amount and are striving to remain as independent as possible. Actually, I think your attitude is admirable. You are not giving up and I hope you never do. I can only imagine how frustrated and helpless you feel at times. I know it must be hard not to be down on yourself, but try to remember how incredibly strong you really are. You are not dealing with a stuffy nose here, you are fighting a horrible disease. Keep fighting and stay strong. You inspire others.
Clementine
P.S. More smothering love being sent your way from me!
You just have so much to deal with and it just isn't fair! Your family loves you very much Carol and they think they are helping you because you have so much on your plate. But, they don't know where to stop. Only you can tell them that. You are one strong, amazing woman and I hope you know that!
I am sending you prayers and hugs,
Debby0 -
Carol, it IS a hard thing to lose
independence. And even the most mundane actions (like going to the Post office), can all of a sudden become vital to your well being, sense of security, sanity!
You're family is loving and protecting you so very much. They just don't want you to be alone. But I can certainly understand the need to have "some" time to yourself.
Maybe you can speak with your Son and work something out. Tell him your "good" days are important to you.
I hope you can work something out that each of you feel comfortable with.
Hugs and prayers for you,
Sylvia0 -
Carol,sea60 said:Carol, it IS a hard thing to lose
independence. And even the most mundane actions (like going to the Post office), can all of a sudden become vital to your well being, sense of security, sanity!
You're family is loving and protecting you so very much. They just don't want you to be alone. But I can certainly understand the need to have "some" time to yourself.
Maybe you can speak with your Son and work something out. Tell him your "good" days are important to you.
I hope you can work something out that each of you feel comfortable with.
Hugs and prayers for you,
Sylvia
I am sure this is so
Carol,
I am sure this is so difficult for you. Losing our sense of independence is hard. I will keep you in my prayers.
Stef0 -
Carol
I'm sorry for all that you're going through. Although it wasn't cancer, I too lost my independence 5 years ago when I broke both shoulders 9 months apart. I couldn't drive for 18 months and had to rely on everyone. For now, take advantage of the help you are getting. I know you feel confined but use this time to just relax. You are not whining and so what if you are. We are here to listen
{{hugs}} Char0 -
My two cents...cahjah75 said:Carol
I'm sorry for all that you're going through. Although it wasn't cancer, I too lost my independence 5 years ago when I broke both shoulders 9 months apart. I couldn't drive for 18 months and had to rely on everyone. For now, take advantage of the help you are getting. I know you feel confined but use this time to just relax. You are not whining and so what if you are. We are here to listen
{{hugs}} Char
My heart aches for you, Carol.......But here's just a little something to think about....reverse the situation.....you would be doing the same if it were a loved one.....with the same concerns for them as they have for you.....it appears you are surrounded by a lot of love.....We've all read posts where a "sister" has had to almost beg for help...you're overwhelmed by it....Speak openly and honestly with those who love you explaining you need some
" breathing room"....if a verbal exchange is to hard, write them each a letter....I am a firm believer in the written word....the receiver reads it and hopefully digests it without speaking.....
I am wishing you easier days....
Lots of big 'ole hugs...and if you were close by, probably a big 'ole sloppy kiss on the cheek!
Nancy0 -
I know this must be so hardcahjah75 said:Carol
I'm sorry for all that you're going through. Although it wasn't cancer, I too lost my independence 5 years ago when I broke both shoulders 9 months apart. I couldn't drive for 18 months and had to rely on everyone. For now, take advantage of the help you are getting. I know you feel confined but use this time to just relax. You are not whining and so what if you are. We are here to listen
{{hugs}} Char
I know this must be so hard to lose or feel like you are losing your independence Carol. I will be praying for you.
Hugs, Jan0 -
I hope you can talk to yourfauxma said:Carol,
I am sure this is so
Carol,
I am sure this is so difficult for you. Losing our sense of independence is hard. I will keep you in my prayers.
Stef
I hope you can talk to your family and tell them exactly how you feel. I will pray that they will understand and you will feel much, much better.
Hugs, Angie0 -
I hope you can talk to yourfauxma said:Carol,
I am sure this is so
Carol,
I am sure this is so difficult for you. Losing our sense of independence is hard. I will keep you in my prayers.
Stef
I hope you can talk to your family and tell them exactly how you feel. I will pray that they will understand and you will feel much, much better.
Hugs, Angie0 -
You've nearly taken my thoughts from my mind
I am finding greater and greater limitations and it's breaking my heart. I too have always been very independent. Walking is becoming more and more difficult for me unless I am doped up on pain meds and even then I can only manage minimal jaunts. 2 weeks ago I had to stay behind on a family outing I planned months ago for my 14 yr old son and a friend because we all knew that having me along would be a hindrance to their fun. I have a 6 month old grandson I am afraid to pick up and carry on my own for fear of falling and hurting us both. They talk about quality of life, yet where is it if we are unable to enjoy the things we love best? But I'll keep plugging along because I want to live. I am not ready to be just a memory.
Big hugs to you!0 -
Happy medium
I like the letter idea as it gives the reciever time to digest what is said and perhaps come up with some good ideas of thier own to help, yet give space.
For instance, if you like to cook and they are doing it all, you can re-claim some or all of the responsibility for that depending on how you feel that day. Same idea with laundry. With mobility problems (and I don't know the extent of them) you can probably get some adaptations made to your bathroom that would be paid for by insurance. Maybe you could tell them you want to do your bathing alone but want them nearby in case there is an issue. You would hate to be stuck with a dificulty bathing that you cannot solve yourself and yet you want to do everything for yourself that you can. Keep up as much walking as you can in thier presence so that they gain confidence in the ability you already have. Tell them you will ask for help when necessary. Maybe you can send them on short errands for you that will give you breathing room but, then they will be back within a half hour or so. This would be a sort of mind break for you both. We used a lot of the short errand trick when my mom had early alzheimers and it worked wonders as she was still quite safe home alone for up to an hour as she did not try anything foolhardy. Good luck with the toning down of help.0 -
Hi Carol
I can understand where you are coming from, I wore myself to the ground
trying to keep up the pace I was used to during chemo. It was a process
before I finally realized I am in a new place and need to slow down. It's so
hard to feel limited. You know how much I admire your strength and the
grace you display. I am so sad that you have to go through this Shhhhh!!!
Let them spoil you rotten, look at it that way. It's nice to be loved and it is
ok for you to be a brat once in a while and tell them exactly what you want,
even if it is a break from them or an exciting trip to the post office. You
know best what you can handle,
Carol, I am sending you my love and wishing for lots of endurance and
strength for you during the tough days ahead.
Hugs,
Ayse0 -
Carol, you have moreLYaklin said:You've nearly taken my thoughts from my mind
I am finding greater and greater limitations and it's breaking my heart. I too have always been very independent. Walking is becoming more and more difficult for me unless I am doped up on pain meds and even then I can only manage minimal jaunts. 2 weeks ago I had to stay behind on a family outing I planned months ago for my 14 yr old son and a friend because we all knew that having me along would be a hindrance to their fun. I have a 6 month old grandson I am afraid to pick up and carry on my own for fear of falling and hurting us both. They talk about quality of life, yet where is it if we are unable to enjoy the things we love best? But I'll keep plugging along because I want to live. I am not ready to be just a memory.
Big hugs to you!
Carol, you have more strength than I could ever even dream of. You are a true warrior! Your family is so caring and want the best for you, and, you want a little less. Please just tell them, or, I like the letter idea too. Write them and express all that you wrote here to them. I will add you to our prayer list Carol, and, let us know what you decide to do.
Lex0 -
Carol, writing your family aaysemari said:Hi Carol
I can understand where you are coming from, I wore myself to the ground
trying to keep up the pace I was used to during chemo. It was a process
before I finally realized I am in a new place and need to slow down. It's so
hard to feel limited. You know how much I admire your strength and the
grace you display. I am so sad that you have to go through this Shhhhh!!!
Let them spoil you rotten, look at it that way. It's nice to be loved and it is
ok for you to be a brat once in a while and tell them exactly what you want,
even if it is a break from them or an exciting trip to the post office. You
know best what you can handle,
Carol, I am sending you my love and wishing for lots of endurance and
strength for you during the tough days ahead.
Hugs,
Ayse
Carol, writing your family a letter might help them to see how their actions are affecting you. I have always admired, as Ayse said, your grace, strength and kindness on here.
I pray that your family will understand and that you will once again, feel independent.
Sue
0 -
Hi everyone. I cant tell you all how much your understanding meaaysemari said:Hi Carol
I can understand where you are coming from, I wore myself to the ground
trying to keep up the pace I was used to during chemo. It was a process
before I finally realized I am in a new place and need to slow down. It's so
hard to feel limited. You know how much I admire your strength and the
grace you display. I am so sad that you have to go through this Shhhhh!!!
Let them spoil you rotten, look at it that way. It's nice to be loved and it is
ok for you to be a brat once in a while and tell them exactly what you want,
even if it is a break from them or an exciting trip to the post office. You
know best what you can handle,
Carol, I am sending you my love and wishing for lots of endurance and
strength for you during the tough days ahead.
Hugs,
Ayse
ns to me!
I am trying to figure out if today was better. I had chemo and my mo appointment. He agrees that the chemo is affecting the lesions and the white matter. He is not concerned that it is cancer, as cancer would not clear up after 4 to 5 days. I talked to him about losing my independence and he says part of that is the progression of my disease, but he is hoping that most of it is from the chemo. I can drive when I have my good days, and he knows that I wont even drive with a migraine. Soooooo that part is settled from his end, I talked to my ex there, they are worried I will fall or get hurt. It is all with love.
Now to the next part. I will have no chemo next week. I lost another 4.6 pounds since last Wednesday, which puts me in the area of 25lb loss after taking me off tamoxifen and evista a month ago, but I have to start taking the Evista again next Wednesday, and if the swelling begins again, then I will go to another one.
I will finish out this round with 2 more chemo's then repeat the bone scan,MRI or CT scan on my lungs and liver, he is not convinced that this chemo is working but we won't know for 4-5 weeks, then I may have decisions to make.
Last big followup is that I will have my wheelchair shortly, they are working with my insurance for a new lightweight motorized scooter that will fit in the trunk, so I will not need a lift. Comes apart in 3-4 places so no heavy lifting. I am excited. I have used the motorized shopping carts 2x now and cant believe how much easier it is to get through the grocery store!
I feel much more balanced today as one of my sisters is here with my niece and great niece, and tomorrow I get my oldest sister and her husband for a full week. I got tickets for the rodeo for Tuesday, and 10 friends and family members are going together it is Tough guys wear pink with proceeds going to bc research, so that should be fun, followed by a trip to the Utah/Nevada state line Wednesday!! So I will have as much fun as is possible.
Thank you all for being so encouraging! It is so hard, and sometimes so unbearable when this disease just keeps on taking and taking..... if it were a friend I would have dropped it from facebook.
Love you all, and I will keep fighting and I am going to make an appointment to go to a counseling appointment with my sons as I am sure they have more questions.
Love and Prayers....
Carol
Got out alone this morning, said I was going to morning mass, and my ex said he thought that would be ok.... LOL Now I know the trick!0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.2K Cancer specific
- 2.8K Anal Cancer
- 440 Bladder Cancer
- 306 Bone Cancers
- 1.6K Brain Cancer
- 28.4K Breast Cancer
- 391 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 12.9K Head and Neck Cancer
- 6.3K Kidney Cancer
- 666 Leukemia
- 789 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 235 Multiple Myeloma
- 7.1K Ovarian Cancer
- 53 Pancreatic Cancer
- 486 Peritoneal Cancer
- 5.3K Prostate Cancer
- 1.2K Rare and Other Cancers
- 532 Sarcoma
- 717 Skin Cancer
- 647 Stomach Cancer
- 190 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards