Dis Breast Cancer Survivors Part II -GAGWTA!

[laurabelle]

Thanks sistas... I am having another bad day here, not bad enough for the ER, lol, but not good. My dr. started me on high dose steroids today, so I expect I'll be posting here about 3:00 am...

 

[Sha]

Thanks sistas... I am having another bad day here, not bad enough for the ER, lol, but not good. My dr. started me on high dose steroids today, so I expect I'll be posting here about 3:00 am...

 

[Pea-n-Me]

I'll probably be up, Laura. See you then.

 

[snappy]

Wish I could do something to help, Laura. I am sending healing thoughts your way and hoping the stronger steriod alleviates your discomfort.

 

[jackskellingtonsgirl]

Laura, more and headed your way!

I am a little (OK, more than a little) frustrated. My mom had her CT and bone scan today. She didn't ask when they will have her results. She hasn't called the social worker at the hospital back. She hasn't gotten the calcium, vitamins, and baby aspirin she is suposed to be taking. She was going to call her oncologist today but she "didn't get around to it".

She had a pelvic ultrasound around the same time as her mammogram that showed what they *thought* were fibroids and a thickening of the uterine wall. Her primary Dr. told her she needs to follow up with an OB/GYN, but she hasn't made that appt.

She has a little job as a school lunch lady. I totally get that the job is her health insurance - I swear I understand that part. But she is using the job as an excuse to avoid getting the calls and other things done. She must be feeling overwhelmed and nervous, but she HAS to keep moving forward. Stopping and sticking her head in the sand is really not a viable option. I can't get back up there until Memorial Day, and these things need to be addressed now.

Anybody have any suggestions?
We have seen this behavior from her before. She is a champion at stubbornly refusing to deal with things. I thought this might be different because we started off pretty well, but now I see her slipping off into her familiar habits. I can beg and plead and suggest and lecture and she will ignore me. DH says no matter what I do there is no way to force her into making these calls and scheduling these appointments. It is up to her. I know that, but it just makes me insane!

 

[lookingforward]

Laura, more and headed your way!

I am a little (OK, more than a little) frustrated. My mom had her CT and bone scan today. She didn't ask when they will have her results. She hasn't called the social worker at the hospital back. She hasn't gotten the calcium, vitamins, and baby aspirin she is suposed to be taking. She was going to call her oncologist today but she "didn't get around to it".

She had a pelvic ultrasound around the same time as her mammogram that showed what they *thought* were fibroids and a thickening of the uterine wall. Her primary Dr. told her she needs to follow up with an OB/GYN, but she hasn't made that appt.

She has a little job as a school lunch lady. I totally get that the job is her health insurance - I swear I understand that part. But she is using the job as an excuse to avoid getting the calls and other things done. She must be feeling overwhelmed and nervous, but she HAS to keep moving forward. Stopping and sticking her head in the sand is really not a viable option. I can't get back up there until Memorial Day, and these things need to be addressed now.

Anybody have any suggestions?
We have seen this behavior from her before. She is a champion at stubbornly refusing to deal with things. I thought this might be different because we started off pretty well, but now I see her slipping off into her familiar habits. I can beg and plead and suggest and lecture and she will ignore me. DH says no matter what I do there is no way to force her into making these calls and scheduling these appointments. It is up to her. I know that, but it just makes me insane!

I would do a family intervention! Explain how waiting can be a disaster and maybe someone can offer to be her cancer coordinator, helping her keep track of appointments, heck even MAKING her appointments, keeping a file on her medical claims, etc. Another great thing is registering her at a "cancer center" where they have one stop shopping, all under one roof. Not sure if there is one in her area, but here in Boca we have one and it helps. The tumor board reviews all cases, and they have a team of doctors, (surgeon, oncologists, radiation-oncologists, nutritionists, etc) under one roof. It might be easier on your mom to go to something like that then on her own.

Cancer treatment is like running a marathon. She needs to be COMMITTED. SOme people just don't have the inner strength because they are afraid, etc. Thats why having someone as her partner might work. She needs to also try and file family leave for illness so that she does not lose her job over missed work,etc.. That might give her peace of mind because she is worried about losing her insurance. If she works for a school then she is most likely intitled...not sure if she works full or part time. Good luck!

 

[jackskellingtonsgirl]

Thanks! I need to go back on the hospital website, but I think they have a cancer center. She would know more about the services available if she would call the social worker back, so maybe I need to push her to do that. She hates to be rushed, though, so when I push her she purposely puts things off even longer.

She qualifies for leave under FMLA, but she doesn't have very much paid time accrued. She thinks she needs to try to bank her sick time so she will have more time off in the Fall. If she has surgery the first of June then I would hope that by August she would be well enough to return to work, but maybe not.

 

[Pea-n-Me]

Here's my .02 FWIW. I hear your frustration, jackskellingtons girl. God knows I experience it with my own family and with patients as well.

In getting this type of news, you sort of go through the stages of grief

Denial: "It can't be happening."
Anger: "Why me? It's not fair."
Bargaining: "Just let me live to see my children graduate."
Depression: "I'm so sad, why bother with anything?"
Acceptance: "It's going to be OK."

because being told you have cancer is a self-perceived loss of health, and can be quite devastating. Many people don't even realize this is happening or recognize it for what it is. This is all unique to each individual and everyone moves through the stages at a different pace, depending on a lot of things, not the least of which is "coping style". It's very common for people to fall back into their old ways of coping when faced with an illness (or other stressor).

As for the solution - that, I don't know. I can probably venture to say that right now, you might need to give your mother a little space to absorb the shock. She might still be in the "denial phase" (and this happens for a reason psychologically). A crisis can only last, at most, three weeks. I think this is one of the reasons why nobody's really "rushed" at the beginning. Time is needed for emotions to settle in. Once you move past the shock/denial piece, then it's time to get busy (thought put on your seat belt for the anger stage, LOL). So I guess my advice would be to give her some space right now. The opposite could cause her to pull away a little bit. In a week or two, then you can resume trying to help her (this will also give you some time as well).

I know it's hard. Hang in there.

 

[laurabelle]

~~~***GAGWTA sistas***~~~
I agree, it's so frustrating to sit back and watch someone not do what you think they should... but being on the other side of it myself, I think you need to let your mom know that she has your unconditional love and support, no matter what. She needs to digest this one bite at a time. Looking at the big picture can be overwhelming... It's a frightening, loss of control. It helps me just knowing that little things were taken care of by my family, leaving the bigger decisions up to me. But you need to allow her to decide what those things will be, you can't just take the wheel out of her hands. I hope she gets to the point where she is willing to talk to other survivors, that could be her biggest help of all...

I slept 3 hours last night, yes steroids suck.

 

[Pea-n-Me]

Laura, this is for you. I took it last night at sunset (picture me running around with a tripod hanging out of my car, the dog barking, my son trying to take pictures beside me, etc), yet I was serene.... Hope you can catch a bit of that feeling.

 

[laurabelle]

Wow! That's breathtaking! Thank you Linda! Now you've got me all teary eyed...it doesn't take much!

 

[snappy]

Good advice from Laura and Linda above. I especially agree that talking with other survivors can be crucial.

I remember the day vividly before my diagnosis when I went in for the call back diagnostic mammogram. I was a bit nervous, my GYN doc at that time was the one that called me and told me to go back in for the second mammogram (never had to do that previously).

My mom went with me. While at the facility, we met a survivor currently going through chemo. While talking together (hey, I start up conversations with strangers all the time as my mom does, you meet great people that way ).
I heard her story, and she found out I was in for a diagnostic mammogram.

She reassured me about how well she was doing, despite the chemo. She was able to work with the help of the anti nausea meds, which she told us were vastly improved. In fact she was working at the breast center facility. Maybe she was doing a little social work, I am not sure but it made me feel better, especially as I went forward through the biopsy, diagnosis, treatment,etc.

Your mother will need you, be available and patient. It must be so difficult being at a distance. I think you are doing a good job so far, despite the situation. Keep the communication going. Call often, even if she isn't addressing her diagnosis and treatment head on, talking together, being a good listener for whatever she does want to talk about is invaluable.

As a woman, mother, and part time accountant, I want to FIX everything. It is my nature specifically, and I think in many women's natures generally. You may be feeling this too. Going through diagnosis and treatment is a process, not an easy one for your mom or her caregivers. It would be wonderful if you mom accepted an advocate of some kind. Does she have a close friend, relative, neighbor who could fill this role?

My husband was my rock. As I have been his at times of crisis. That is what she needs a rock, to lean on and buffer her. I hope she finds one and even more will accept one.

 

[snappy]

Linda, what a picture!!! thanks for sharing. Where was this taken, exactly?

Did you tak a special serene pill or something? I am feeling anything but serene lately, with my apparent job of bringing up puppy.

Tell me again that the puppy will calm down some. Snappy was never like this but must have been close to a year old when we got her.

Naj embarrassed me yesterday when I took her out to the soccer field. She was good with the kids, but lunged at a small pom. Luckily, I had her leash shortened and firmly in hand. The pom as well as some adorable dachsund 7 week old puppies (owner was trying to sell them at the field )
made Naj look like a flipping beast.

DH would never go for a full bread pom or dachsund, we talked about that before adopting Naj. If we had to get a second dog, he wanted a DOG, a manly dog.

Linda, I thought of you at the vet last week. Two other owners have or had earlier in life dogs that looked identical to Naj at the same age, both were chow/German shepherd mixes. I had already come up with the German shepherd part on my own from looking as pictures and comparing her large standup ears with that breed's ears.

Don't you think taking her out as much as possible while she is young is a good idea, to socialize her with people and dogs?

 

[laurabelle]

 

[laurabelle]

 

[laurabelle]

Epcot Family of the day button! I'll post copies of my photopass pics when I get them...

 

[jackskellingtonsgirl]

Thanks for understanding, ladies!

My mom has a lot of issues that go way back, and those past experiences are going to have a negative impact on the way she reacts to her cancer.

My father was an alcoholic, and he was VERY controlling. She was married to him for nearly 40 years. She is very good at enabling and avoiding confrontation. He also managed to make her feel like she is worthless, which I think is why she never goes to the Dr. - she has been brainwashed into thinking she isn't valuable enough to be in good health. I can talk until I am blue in the face but he had absolute power over her, and what he said to her stuck. He finally drank himself to death in 2006. They were divorced at the time but she was still at his beck and call, 24/7.

Now there are 2 things going on:
She is absolutely GIDDY with freedom and purposely defies me when I make a suggestion. She figures I can't MAKE her do what I say. The other thing is her tendency to completely shut down when there is a problem. When she lost her house (it was foreclosed because my father moved out and stopped paying the mortgage) she had only managed to pack up one room the day before she lost possession of the house. I went over to try to help her and she bit my head off for throwing away little piddly stuff like the toys you get in goody bags at birthday parties. She didn't want ANYTHING thrown away because she was going to have a garage sale. Um, no, because she no longer had a garage. Same sort of thing when she moved from her apt. here in TX to KS. The morning she was supposed to move she wasn't packed. DH tried to help her. She hired movers. But she wasn't packed and she went nutso when DH and the movers were trying to load the truck. She REALLY needs counseling, and so does my sister, but she just keeps ignoring the problems.

Sorry for the vent! I just don't know if she will get over this hump and do what she needs to do.

 

[snappy]

Laura, thanks for the spring in WDW pics!!!

Hey, couldn't you find a little more pink, or something??????

 

[snappy]

Thanks for understanding, ladies!

My mom has a lot of issues that go way back, and those past experiences are going to have a negative impact on the way she reacts to her cancer.

My father was an alcoholic, and he was VERY controlling. She was married to him for nearly 40 years. She is very good at enabling and avoiding confrontation. He also managed to make her feel like she is worthless, which I think is why she never goes to the Dr. - she has been brainwashed into thinking she isn't valuable enough to be in good health. I can talk until I am blue in the face but he had absolute power over her, and what he said to her stuck. He finally drank himself to death in 2006. They were divorced at the time but she was still at his beck and call, 24/7.

Now there are 2 things going on:
She is absolutely GIDDY with freedom and purposely defies me when I make a suggestion. She figures I can't MAKE her do what I say. The other thing is her tendency to completely shut down when there is a problem. When she lost her house (it was foreclosed because my father moved out and stopped paying the mortgage) she had only managed to pack up one room the day before she lost possession of the house. I went over to try to help her and she bit my head off for throwing away little piddly stuff like the toys you get in goody bags at birthday parties. She didn't want ANYTHING thrown away because she was going to have a garage sale. Um, no, because she no longer had a garage. Same sort of thing when she moved from her apt. here in TX to KS. The morning she was supposed to move she wasn't packed. DH tried to help her. She hired movers. But she wasn't packed and she went nutso when DH and the movers were trying to load the truck. She REALLY needs counseling, and so does my sister, but she just keeps ignoring the problems.

Sorry for the vent! I just don't know if she will get over this hump and do what she needs to do.

Wow, I agree, counseling is in order. You alone cannot get her over these bumps in the road. I am so sorry after the life she has lead with your dad that she is facing cancer now when she is finally free.

It makes sense no why she is so in denial.

I have no further suggestions. She has to want the help.

I have faced that with one of my brothers who is in Costa Rica. He needs major help (gambling addiction, in addition to who knows how many others) but won't seek it. He picked up and left and rode a bicycle across the country when we tried to do an intervention. No kIdding, he someow made in to Phoenix but was in very bad condition. And it goes down from there.

Sending you a hug.

 

[jackskellingtonsgirl]

Snappy - thanks for the hug!
I just came back from a check-up with my primary Dr. She said I should get counseling for myself and just take a step back. Let my mom know I am here to help her in any way I can, but she has to decide how to proceed.

I volunteered with AIDS clients for years, and we were taught to empower, not enable. We could help our clients find the resources they needed, explain the options, etc. but then we had to hand it over to the client to decide what to do with the info. As long as they understood the ramifications of the choices then they were free to make whatever choices suited them. But I am way too tangled up in this to present the options and step back.

Laura & Linda - Your pics are beautiful! Thanks for posting them! DH hasn't taken his memory card out for me to load photos on the computer in awhile. I should ask him for it and see if there is anything worth posting!