Cancer Support and Caregivers Who Are Trail Blazers!

[deb_U_taunt]

Originally Posted by JAGG

That's great Debby! Hey look penguins!!!!! hahah or is that a dove , or wait no quail, hahah never mind.

It will be a party for sure. I haven't been able to drink a cup of coffee for months. lol

[DapperButch]

Originally Posted by Debby

It will be a party for sure. I haven't been able to drink a cup of coffee for months. lol

Were you told to not drink coffee during chemo?

[deb_U_taunt]

Originally Posted by DapperButch

Were you told to not drink coffee during chemo?

It was adding to some side effects. lol It was not pretty.

[deb_U_taunt]

Had my first Taxol today. I only have 3 more chemo treatments to go!!!

I am starting to loose my fingernails. Don't remember reading about this side effect. Gotta say, this one bothers me more then losing my hair.

Bride side: Taxol is supposed to be easier on the stomach, so maybe I can have a cup of coffee, again.

[deb_U_taunt]

Okay, so a Taxol side effect is bone pain. It started Saturday night and by Monday, when I got to the Dr, the pain had gotten a good hold on me. I didn't get the pain under control until Tuesday. I am hoping like hell this isn't going to be the norm.
Bright side: The bone pain only lasted 5 days and this is all temporary.

[JustJo]

Hey everybody

I hesitated to post in here because I don't have cancer, and I can't consider myself a caregiver since I'm 1300 miles away as my mother is going through this....but I do find myself dealing with bucket loads of the emotional crap...so thought I would anyway. Hope that's okay.

I've posted parts of this in other places, but...the Readers Digest version...my mother has had Crohn's disease basically all of my life, and the first "she's going to die" scare came when I was 7. Obviously, she didn't die...and through a very many ups and downs and scares and hospitalizations and surgeries and such...she's still here as I approach the 50 year mark.

Last fall (almost a year ago now...wow) she started having pain, losing weight, lots of stuff that she's been through before and assumed it was the Crohn's. She put off going to the doctor and addressing it (as usual for her) and tried to tough it out. She did for months...but continued to lose weight.

When she came to see us in the spring she looked incredibly thin, felt horrible, couldn't eat, etc. She went home promising to go to the doctor, which she did. Many tests later....unsure what's going on...probably Crohn's...blah blah blah.

In late May a friend ran into her in the medical center hallway and basically said "screw your doctor, we're going to the ER." They did, and she was admitted from there.

Two weeks of hospitalization with IVs of potassium, antibiotics, transfusions, tube feeding, etc. to get her strong enough for surgery...we've been through this before about 6 or 7 years ago when she had the colostomy....then surgery.

She was in the hospital a week more, sent home...telling me she's fine.

Then, a panic phone call from my estranged sister followed (the next day) by a note in the mail (long, complicated story but that's my mother)....to tell me it's cancer and she's known since she was in the hospital and before the surgery.

No other information except that the oncologist says it's "pretty well advanced" and she has to have 6 months of chemo. She's doing that now, but she's also making plans like she's dying...and talks like this is the thing that's going to take her out.

I'm finding this incredibly hard for a whole variety of reasons that I can't even explain. She and I have had a very difficult relationship...she's a narcissist, and my childhood was full of the craziness that goes with that...and the damage that follows. As horrible as it sounds, part of me is hoping the chemo will cure her, and part of me is wishing it was just over with.

We talk a couple times a week. She's coming to visit, probably in October - her request for an extended one-on-one visit (traditionally she can tolerate a 3 day visit.....maybe 4). She's done her will. She wants me to accumulate all the funny pictures of her and my son (they've always been close) so she can make an album of just the two of them....for me to give him after she dies.

Her illness has also opened the door back up to communication with my sister....more difficult and painful even than communication with my mother. She is trying to pretend that we're loving sisters...and has the astounding ability to "forget" or whitewash the emotional and physical abuse she heaped on me for years...and what she did to my son (which ended contact between us).

I find myself crying at the drop of a hat...feeling emotional and exhausted and frustrated and angry and depressed and things I don't even have a word for....wanting closeness and support and then also wanting everyone to just leave me the hell alone. Meanwhile...life goes on, and I need to be an employee and a mother and a partner and make dinner and and and.....and function.

How do you all do it?

[DapperButch]

Originally Posted by JustJo

I find myself crying at the drop of a hat...feeling emotional and exhausted and frustrated and angry and depressed and things I don't even have a word for....wanting closeness and support and then also wanting everyone to just leave me the hell alone. Meanwhile...life goes on, and I need to be an employee and a mother and a partner and make dinner and and and.....and function.

How do you all do it?

One foot in front of the other.

But, I know that you are coming from a different place from me.

It makes sense to me Jo that in the face of your mother's (possible) terminal illness, that a lot of things are going to come up for you. I think it happens to every person that is being faced with a significant loss.

Since your relationship is so complicated and there is so many left over feelings about the past, it makes it even more complicated, I think.

All of the "symptoms" you describe can really fall under "loss' when the death of a person you have a complicated relationship with ends. And I am not calling your mother "terminal" (did she tell you the 6 month thing, or the oncologist himself/herself?), but I wonder if being clear on her prognosis would help things a bit for you. Being in the gray area is hard.

The best suggestion I could give you is to consider counseling to help you move through all of this. I know that is a pat answer, but....

If you are open to that, look for a therapist who specializes in working with people/partners who have cancer. At the place where I received my chemo, they had two psychologists that I could have seen. Really though, any therapist who works with loss should have the skill set to help a person work through all their mixed feelings about someone who was not so kind to them, passing.

Also, most importantly, give yourself a break. Right now you may not be able to be the best employee, partner, mother. And that is ok. I suspect that you are a person who feels guilty if she can't be superwoman 24/7, but guess what, sometimes superwoman needs a rest.

Ask your partner to hang in there with you and be there when you need her, but back off when you need her to do that, too. Apologize to your kid if you have less patience than usual...and work..either talk with your boss, or fake it.

Good luck. You WILL get there.

And come in here and talk whenever you like...PLEASE!

[deb_U_taunt]

There is no trick to doing it. Some days I can't do it. I have a friend staying with me for emotional support during chemo, but honestly over having her around all the time. Even with her being my bestie. She is getting on my nerves. I still do all the cooking and cleaning, since she doesn't do that for herself at home, so isn't doing it here. lol My partner left me the day after my third chemo treatment. I am exhausted and burned out.

My mother-in-law is a narcissist, too. And somehow has made this about her. Even sending out prayer requests on facebook and getting condolences sent her way. When I had surgery, she showed up and it stressed her out so much, she checked into the ER with chest pains. (they couldn't find a thing)

I have a sister who doesn't understand why I am choosing to do chemo and radiation and not just go vegan and the gym for treatment.

Sad thing is, the longer I am sick the less I see and hear from people. Then again I have a hard time concentrating enough to have a conversation. So I truly understand what you mean by wanting support and wanting to be left alone. AND crying at the drop of a hat.

I understand why your mom is getting affairs in order. I now have a will and insurance papers are all together in my safe. This is normal, whether you know you will survive or not. Everyone in my cancer support group has done the same thing. It is life changing in how you view things. Life becomes staying in the present and not looking at even next week most of the time. I know I will survive, but doesn't mean there isn't that bit of fear and doubt. Nothing is 100%. My survival rate is not 100%. At my stage it is 81%.

She might be talking about not surviving, but she is making plans to come see you. 'Pretty far advanced' is really vague. Will she share with you the stage and grade of her cancer?

Anyway you can take a break and just be for a weekend? Let your partner take you out for dinner and get a sitter?

Originally Posted by JustJo

Hey everybody

I hesitated to post in here because I don't have cancer, and I can't consider myself a caregiver since I'm 1300 miles away as my mother is going through this....but I do find myself dealing with bucket loads of the emotional crap...so thought I would anyway. Hope that's okay.

I've posted parts of this in other places, but...the Readers Digest version...my mother has had Crohn's disease basically all of my life, and the first "she's going to die" scare came when I was 7. Obviously, she didn't die...and through a very many ups and downs and scares and hospitalizations and surgeries and such...she's still here as I approach the 50 year mark.

Last fall (almost a year ago now...wow) she started having pain, losing weight, lots of stuff that she's been through before and assumed it was the Crohn's. She put off going to the doctor and addressing it (as usual for her) and tried to tough it out. She did for months...but continued to lose weight.

When she came to see us in the spring she looked incredibly thin, felt horrible, couldn't eat, etc. She went home promising to go to the doctor, which she did. Many tests later....unsure what's going on...probably Crohn's...blah blah blah.

In late May a friend ran into her in the medical center hallway and basically said "screw your doctor, we're going to the ER." They did, and she was admitted from there.

Two weeks of hospitalization with IVs of potassium, antibiotics, transfusions, tube feeding, etc. to get her strong enough for surgery...we've been through this before about 6 or 7 years ago when she had the colostomy....then surgery.

She was in the hospital a week more, sent home...telling me she's fine.

Then, a panic phone call from my estranged sister followed (the next day) by a note in the mail (long, complicated story but that's my mother)....to tell me it's cancer and she's known since she was in the hospital and before the surgery.

No other information except that the oncologist says it's "pretty well advanced" and she has to have 6 months of chemo. She's doing that now, but she's also making plans like she's dying...and talks like this is the thing that's going to take her out.

I'm finding this incredibly hard for a whole variety of reasons that I can't even explain. She and I have had a very difficult relationship...she's a narcissist, and my childhood was full of the craziness that goes with that...and the damage that follows. As horrible as it sounds, part of me is hoping the chemo will cure her, and part of me is wishing it was just over with.

We talk a couple times a week. She's coming to visit, probably in October - her request for an extended one-on-one visit (traditionally she can tolerate a 3 day visit.....maybe 4). She's done her will. She wants me to accumulate all the funny pictures of her and my son (they've always been close) so she can make an album of just the two of them....for me to give him after she dies.

Her illness has also opened the door back up to communication with my sister....more difficult and painful even than communication with my mother. She is trying to pretend that we're loving sisters...and has the astounding ability to "forget" or whitewash the emotional and physical abuse she heaped on me for years...and what she did to my son (which ended contact between us).

I find myself crying at the drop of a hat...feeling emotional and exhausted and frustrated and angry and depressed and things I don't even have a word for....wanting closeness and support and then also wanting everyone to just leave me the hell alone. Meanwhile...life goes on, and I need to be an employee and a mother and a partner and make dinner and and and.....and function.

How do you all do it?