Cancer Support and Caregivers Who Are Trail Blazers!

[JAGG]

Originally Posted by Tommi

Damn good.Everybody dance!!

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

[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?

[JustJo]

Thank you Dapper and Debby

It really does help to hear that some of this is normal...for me and for her.

Unfortunately she won't share any information about the stage of her cancer (claims that they didn't tell her...which is nonsense...and that she doesn't want to know...which sounds like her). With HIPAA they won't/can't tell me anything...at her request no one has anything beyond being an emergency contact.

One foot in front of the other is the theme (for both of us I think) at this point. My boss has been totally supportive (it helps that his mother has had 3 bouts with cancer)....which is a big help....although there are a lot of days when I find myself staring at the computer screen and totally unmotivated to do anything for work. Thank goodness I work from home so no one can see me.

I'm pretty sure that I'm driving Scoote completely nuts...because I really can't explain why one minute I'm fine and the next I'm truly not. Poor her. It has to be crazy-making.

Anyway...thank you to you both again. It really helps just to be able to talk/write about it.

[deb_U_taunt]

The Dr told her stage and grade, she wasn't listening or like you have said about her, for drama's sake she isn't sharing. My mother-in-law would probably not share either, just in case her's wasn't as bad as the next person's. lol

My boss has been really supportive, too. His mom lost a kidney to cancer last year.

I work from home most of the time, too. Lots of days lately have been spent staring at the wall behind my laptop.

Yep, you are so damn normal.

PM me too if you ever need to talk or vent.

Hugs, Debby

Originally Posted by JustJo

Thank you Dapper and Debby

It really does help to hear that some of this is normal...for me and for her.

Unfortunately she won't share any information about the stage of her cancer (claims that they didn't tell her...which is nonsense...and that she doesn't want to know...which sounds like her). With HIPAA they won't/can't tell me anything...at her request no one has anything beyond being an emergency contact.

One foot in front of the other is the theme (for both of us I think) at this point. My boss has been totally supportive (it helps that his mother has had 3 bouts with cancer)....which is a big help....although there are a lot of days when I find myself staring at the computer screen and totally unmotivated to do anything for work. Thank goodness I work from home so no one can see me.

I'm pretty sure that I'm driving Scoote completely nuts...because I really can't explain why one minute I'm fine and the next I'm truly not. Poor her. It has to be crazy-making.

Anyway...thank you to you both again. It really helps just to be able to talk/write about it.

[deb_U_taunt]

Damn, you never know what life will throw your way.

[Tommi]

Just Jo,

Yes, this absolutely a great place to write about what is going on. Just a word of encouragement to take care of YOUR emotional ups and downs. Write about it, talk about it, cry about it.

It's really weird when someone you know gets cancer. For them, it is that wake up and smell the coffee time.

For you, it is being on the outside , looking through the window, but , with your Mom, it seems like she has the blinds closed.

My Mom was diagnosed with lung cancer after bouts of pneumonia, etc. SHE did not want to know the stage. We were told it was inoperable, and was not looking very good, and after 3 mos or so, that there would be nothing more they could do for her. Long story short, she lived almost 5 years, and died suddenly of a heart attack, just after a complete good bill of health physical. She had chemo, radiation that first 3 mos, etc.and said she was not ready to die from cancer.

On the other hand , some people really don't want the fight and just go along with what's left of life. Whatever, it is , I have found over the years, working as a volunteer with cancer patients, and at one time in the medical field taking care of them, that people with cancer really just need someone to listen to them, when and if they are ready to talk.

Come back and let us know how you are doing.

Best regards,
Tommi

[deb_U_taunt]

The nurse was able to get a vein on the first try today.

Only 2 more chemo treatments left!!!!!!!!!

[Novelafemme]

{{{{Jo}}}}} Cancer drains not only the person it's attacking, but everyone around it as well. Everything you are feeling, thinking, experiencing is totally normal. Even the icky family stuff. People resurface and make appearances in your life and think that it's ok to use the cancer as a bridge over troubled waters...and it really is up to you whether or not to insert parameters and boundaries or not. There are no rules when it comes to cancer. Just remember to take deep breaths and know that things won't always feel this heavy.

[Starbuck]

My friend R just finished her 6th cycle, or 12th treatment of 5 different toxic medications for her non-hodgekins lymphoma in her chest and neck and I was her caregiver. There were hospital stays, times we had to rush her to the ER due to fevers and uncontrollable bone pain, all sorts of things. But the good news is she made it through and her hair is starting to come back in! Many of her good natured friends are "betting" on what color and how it's going to look, whether straight or curly, it was long and straight before. I can't say it was easy, I remembmer sitting with her in the ER, holding her hand crying with her because she was in so much pain and I felt so helpless to help her. Never once did she lose her appreciation for the help she received from the nurses and doctors that came into her room; she always thanked them. What a blessing she is in my life! Thank you, R, for being such an inspiration to me and so many others as you continue your recovery. I love you very much.

[IttyBittyFem]

Originally Posted by Novelafemme

{{{{Jo}}}}} Cancer drains not only the person it's attacking, but everyone around it as well. Everything you are feeling, thinking, experiencing is totally normal. Even the icky family stuff. People resurface and make appearances in your life and think that it's ok to use the cancer as a bridge over troubled waters...and it really is up to you whether or not to insert parameters and boundaries or not. There are no rules when it comes to cancer. Just remember to take deep breaths and know that things won't always feel this heavy.

Very well said lovely Lady!

[DapperButch]

Jo, how are you doing? How is your mom?

[JustJo]

Originally Posted by DapperButch

Jo, how are you doing? How is your mom?

Hi Dapper, and thank you.

She's not doing well. Her weight is down to 101, and she's been feeling sick, exhausted and dizzy. Some of it was dehydration (a perennial problem after an iliostomy and colostomy....she has no colon left at all and that's where most fluid reabsorption happens). She went in and had IVs of fluids and that helped some but she still feels very rough. Walking up one flight of stairs to her bedroom leaves her out of breath...although she claims she can walk well enough that she refused when I said we'd meet her with a wheelchair at the airport (Orlando is big and there's lots of walking).

We're moving up the timeframe for her trip down here...so it'll be end of September when the kids here have a 4 day weekend, so Rooster can spend more time with her as well. She wants to go see Miami and Key West, although it will mostly be a driving tour I'm sure, peppered with restaurants and finding nice places to sit and visit rather than adventuring around.

Luckily her friends are being incredibly wonderful, and I owe all of them a huge debt....they're bringing her meals, mowing her lawn, doing her shopping, tidying up her house...whatever she needs.

She still hasn't told me stage, etc. and "doesn't want to know" herself...so I really don't feel like I can push it. She did tell me that the oncologist, when discussing the chemo, said that without it he'd give the cancer an 80-90% chance of recurring....so refusal wasn't really an option. That sounds like it was pretty bad to me. She hasn't said more about the "belly wash" procedure....so I'm not sure if they're planning that after she finishes the regular chemo or what. It's on my list to ask her...

We're doing the "one day at a time" thing in a big, big way around here.

Hugs,
Jo

[Tommi]

Jo,
Hang in there.

It gets rough around the edges, especially as they lose their independence. Wheelchair at Orlando sounds ideal. Maybe later on, as a treat for Rooster to push her, Wheeee, and save her strength for more exciting times ???

My Mom was soooo stubborn, that I had to cajole her into things. So was I , 7 years ago, as I can best recall. It was my way , or no way---but I was like that before Uterine cancer .

and I guess your Mom was too. well, as you said, we do it one day at a time, and I am up to enjoy the sunrise, hot coffee and the jacuzzi...

Love to ya'alllll