Cancer Support and Caregivers Who Are Trail Blazers!

[fiercegrrl]

so, in the last week i've had some scary days. i almost went to the hospital one night because it hurt so bad to take a deep breath. and then i had a three day stretch where i could not hold down food, water, or meds. so i almost went to the hospital again. it's still not ruled out all the way as i'm experiencing a lot of nausea.
but i met with my palliative care doctor on monday and he suggested that hospice care might be appropriate for me. and i can still be enrolled in it as i go through clinical trials.
i agreed. and i'm still having panic attacks about it.
i don't know how to tell my family or friends. i'm afraid they will think that it means i am giving up. which is not the case at all. but i'm very realistic and don't sugar coat my life and i know that there will be no miracle cures for me. the clinical trials that i'm hopefully going to be starting soon will hopefully add some more time for me. and i want to do everything i can to enjoy everything i can. i want to stop gritting my teeth because i'm stubborn and don't want to take pain meds. i don't want to feel nauseous- i love food! i want to enjoy food!
most people i know want me to live in a fantasty land that i won't die. i don't want to live in a fantasy land of denial.
oy i'm rambling...

[Spirit Dancer]

Originally Posted by fiercegrrl

so, in the last week i've had some scary days. i almost went to the hospital one night because it hurt so bad to take a deep breath. and then i had a three day stretch where i could not hold down food, water, or meds. so i almost went to the hospital again. it's still not ruled out all the way as i'm experiencing a lot of nausea.
but i met with my palliative care doctor on monday and he suggested that hospice care might be appropriate for me. and i can still be enrolled in it as i go through clinical trials.
i agreed. and i'm still having panic attacks about it.
i don't know how to tell my family or friends. i'm afraid they will think that it means i am giving up. which is not the case at all. but i'm very realistic and don't sugar coat my life and i know that there will be no miracle cures for me. the clinical trials that i'm hopefully going to be starting soon will hopefully add some more time for me. and i want to do everything i can to enjoy everything i can. i want to stop gritting my teeth because i'm stubborn and don't want to take pain meds. i don't want to feel nauseous- i love food! i want to enjoy food!
most people i know want me to live in a fantasty land that i won't die. i don't want to live in a fantasy land of denial.
oy i'm rambling...

FG
Going into hospice isn't giving up, it's another tool in your fight against this Cancer, a tool to help you remain strong and try to be free of pain. Let your family know you're not giving up that you are simply adding to your exsisting support system. Panic is a coping mechanism we use when we fear losing our control, it is okay to feel. Know if you need more support there are many online support groups as well there are many in the DC area, if you should neeed anything PM and i'll link you site.
Hope, Faith and healing light to you.

[SuperFemme]

Originally Posted by fiercegrrl

so, in the last week i've had some scary days. i almost went to the hospital one night because it hurt so bad to take a deep breath. and then i had a three day stretch where i could not hold down food, water, or meds. so i almost went to the hospital again. it's still not ruled out all the way as i'm experiencing a lot of nausea.
but i met with my palliative care doctor on monday and he suggested that hospice care might be appropriate for me. and i can still be enrolled in it as i go through clinical trials.
i agreed. and i'm still having panic attacks about it.
i don't know how to tell my family or friends. i'm afraid they will think that it means i am giving up. which is not the case at all. but i'm very realistic and don't sugar coat my life and i know that there will be no miracle cures for me. the clinical trials that i'm hopefully going to be starting soon will hopefully add some more time for me. and i want to do everything i can to enjoy everything i can. i want to stop gritting my teeth because i'm stubborn and don't want to take pain meds. i don't want to feel nauseous- i love food! i want to enjoy food!
most people i know want me to live in a fantasty land that i won't die. i don't want to live in a fantasy land of denial.
oy i'm rambling...

i understand what you mean about hospice care and your family feeling you're giving up. you do what is best for you, and it sounds like hospice isn't a bad idea.

want to know something fabulous? if you DO get hospice care it doesn't mean you HAVE to die within a certain time frame.

get your doc to write you a scrip for zofran injections...it's the only thing that really works on the nausea. take your pain meds. start hospice...goddess knows we are all pulling for you and worried about the fact that your mom likes to steal your medicines. you need support and a team. hospice can give you that. ((((hugs))))

[Andrew, Jr.]

Fiercegrrl,

Zofran is wonderful! Use it to your advantage. I took it when I had my surgeries. It did wonders for nausea. Plus if you have hospice workers there with you, your mother cannot take your medicines. They will take that over first thing.

Remember that hospice is a service. It is not giving up, honey. No No No. I will tell you what I told my sister when this service was offered to us. I said yes and she looked at me with huge brown eyes. I could tell what she was thinking - I was a nut in writing her off. That was the last thing on my mind. It meant that we would have backup giving us more time together. We would not have to worry about the little things in life that take our time up. Let them worry with that. If we wanted to sit outside on her shaded deck and enjoy the garden, and lawn, then we had the time to do so.

Nobody knows the end. Nobody can tell you that. No doctor, no nurse. Get that thinking out of your head.

You are on my mind, and in my prayers. Know that I love you dearly.

Love and Peace,
Drew

[Andrew, Jr.]

There is a free magazine to anyone and everyone who wants it. It is called "Cure-Cancer Updates, Research, & Education". I was told about this by my late sister's oncologist. In fact, she told all of her patients & families, relatives, & friends to get it.

This is everything you need:

1. www.curetoday.com
2. call 1-800-210-cure (2873)
3. fax 214-367-3306

In the upcoming issues of Cure:

-The latest advances in treating breast cancer

-Health Care Reform

-Energy Balance

-Survivor Guilt

-Finding a Professional Caregiver

-Managing Depression

Namaste,
Drew

[Andrew, Jr.]

Rosie came across this, and actually told me to post this article. It was in The Baltimore Sun's Parade Magazine July 4, 2010 issue.

It basic states that leftover medicines safely is not about flushing them down the toilet or throwing them away in the trash. The National Community of Pharmacists Assoc. has launced a "Dispose My Meds" campaign. More than 800 communiity pharmicies in 40 states have signed on. It's easy to do. Find a partcipapating pharmacy and it will send them to a medical waste facility. Or you will get a postage paid envelope to use to mail everything direcly from your home. Some of the medicine and other medical supplies are also recycled for those who are in need.

Go to DisposeMyMeds.org for details and to find a pharmacy near you.

Namaste,
Drew

[suebee]

Two years ago yesterday, and I forgot all about it until I saw this thread. I guess that's a good sign, huh?

Prayers and hugs to everyone.

Sue

[Andrew, Jr.]

Cancer never ends. It takes so many loved ones. I am just so unprepared for what it has taught me. It takes my very breath away each and every time.

[Tommi]

Originally Posted by suebee

Two years ago yesterday, and I forgot all about it until I saw this thread. I guess that's a good sign, huh?

Prayers and hugs to everyone.

Sue

Yes..That is agood sign suebee..

[Spirit Dancer]

Wanted to share this experience here, in case it may help
someone else out.
You are your family members best advocate, especially if they cannot
voice their issues or concerns at this time.
If they've been told all avenues have been exhausted and the only road left is clinical trial.
Know that if the doctors want to keep you on even low dose chemo,
that can diqualify you from most trials. Ideally they like you to be
on a rest period first then start your trial.
When a cancer patient is already struggling with their diagnosis and the issues related to it,
you the caregiver are their best advocate.
A journal and planner have been my best friend throughout this fight.

[Tommi]

Originally Posted by Spirit Dancer

Wanted to share this experience here, in case it may help
someone else out.
You are your family members best advocate, especially if they cannot
voice their issues or concerns at this time.
If they've been told all avenues have been exhausted and the only road left is clinical trial.
Know that if the doctors want to keep you on even low dose chemo,
that can diqualify you from most trials. Ideally they like you to be
on a rest period first then start your trial.
When a cancer patient is already struggling with their diagnosis and the issues related to it,
you the caregiver are their best advocate.
A journal and planner have been my best friend throughout this fight.

((((((((fiercegrrl)))))) and (((((((((all those that come here to post and read)))))))).
Great advice Spirit Dancer. Information gets lost in the desire to just live and breathe. We take so much for granted. I need to write a story, and vent..so here goes.
My friends life changed forever in a simple hospital visit yesterday. She has no family locally, lives alone and has 2 cats. So far, Radiation doctor wants to start treatment. Onchologist wants to start chemo. She had a portacath inserted last week.

I took MB to the hospital yesterday to have a feeding tube inserted via a laparoscopy, and an expected overnight stay so they could teach her how to use it and observe her status. Due to breathing complications , she ended up in ICU on a ventilator as I type this. She has been going through testing for esophageal vs. lung cancer over the last 6 weeks, and has lost 30 pounds, because something was closing off her throat and she couldn't swallow. I was in the room when the Anesthesiologist and the Gasterenterologist interviewed her about what , when , where she had things done. She was totally dazed. Since I had taken her to the hospital/Dr. visits all over SO Cailf, I knew she had the PetScan, when the portacath was done, and when the thyroid biopsy came back adenocarcinoma. Docs. said "You seem to be having trouble breathing . She was indignant and said "You would be too, if you couldn't breathe or swallow, and you had this thing pushing on your throat.". They KNEW ahead of time. I told them she wasn't able to have an espghogram because they couldn't get even a pediatric size tube down her throat. She said "Oh yeah, I forgot about that"

Well, the Surgeon came out to tell me the feeding tube was in and the surgery went well, and she would be in the recovery room and go to her room in about an hour, and they would call me on the surgical waiting room phone. 1.5 hours, I called recovery and was told she wasn't in there yet. I called again at 2 hours, 2 1/2 hours and the 3rd hour call , a nurse came out to tell me..

" There are complications. She isn't able to breathe on her own. Doctors are deciding if she needs a trach,needs to be put on a ventilator. Are you next of kin, a relative, or?/?." I was dazed, said no. and she said well, I can't tell you anymore . I called Milana's sister who lives in Northern CA to tell her the news, and she called me back to tell me they are taking Milana for a Cat scan to see the position of the tube, she is on a respirator, tied down, and sedated, and I am not permitted to see her since I am not a member of the family. She said she will call me with any news.

Life changed for Milana at 3:30 PM yesterday, and for all her gay friends who are shut out.
So, I just needed to vent..

Keep a journal for those that can't. I wish I had thought of that for Milana.

[Spirit Dancer]

Originally Posted by Tommi

((((((((fiercegrrl)))))) and (((((((((all those that come here to post and read)))))))).
Great advice Spirit Dancer. Information gets lost in the desire to just live and breathe. We take so much for granted. I need to write a story, and vent..so here goes.
My friends life changed forever in a simple hospital visit yesterday. She has no family locally, lives alone and has 2 cats. So far, Radiation doctor wants to start treatment. Onchologist wants to start chemo. She had a portacath inserted last week.

I took MB to the hospital yesterday to have a feeding tube inserted via a laparoscopy, and an expected overnight stay so they could teach her how to use it and observe her status. Due to breathing complications , she ended up in ICU on a ventilator as I type this. She has been going through testing for esophageal vs. lung cancer over the last 6 weeks, and has lost 30 pounds, because something was closing off her throat and she couldn't swallow. I was in the room when the Anesthesiologist and the Gasterenterologist interviewed her about what , when , where she had things done. She was totally dazed. Since I had taken her to the hospital/Dr. visits all over SO Cailf, I knew she had the PetScan, when the portacath was done, and when the thyroid biopsy came back adenocarcinoma. Docs. said "You seem to be having trouble breathing . She was indignant and said "You would be too, if you couldn't breathe or swallow, and you had this thing pushing on your throat.". They KNEW ahead of time. I told them she wasn't able to have an espghogram because they couldn't get even a pediatric size tube down her throat. She said "Oh yeah, I forgot about that"

Well, the Surgeon came out to tell me the feeding tube was in and the surgery went well, and she would be in the recovery room and go to her room in about an hour, and they would call me on the surgical waiting room phone. 1.5 hours, I called recovery and was told she wasn't in there yet. I called again at 2 hours, 2 1/2 hours and the 3rd hour call , a nurse came out to tell me..

" There are complications. She isn't able to breathe on her own. Doctors are deciding if she needs a trach,needs to be put on a ventilator. Are you next of kin, a relative, or?/?." I was dazed, said no. and she said well, I can't tell you anymore . I called Milana's sister who lives in Northern CA to tell her the news, and she called me back to tell me they are taking Milana for a Cat scan to see the position of the tube, she is on a respirator, tied down, and sedated, and I am not permitted to see her since I am not a member of the family. She said she will call me with any news.

Life changed for Milana at 3:30 PM yesterday, and for all her gay friends who are shut out.
So, I just needed to vent..

Keep a journal for those that can't. I wish I had thought of that for Milana.

((((((((((Tommi)))))))))) and ((((((((MB))))))))))
I so very sorry to read this, it is very unfortunate when we are not next of kin or have that wonderful advance directive or POA we are shut out. Clearly even in 2010 there needs to be more in place for those of us who are deemed "just a friend." Today I light candles for you all and send light your way.