Cancer Support and Caregivers Who Are Trail Blazers!

[Andrew, Jr.]

We have done this at one point in our lives. We make due with what we have. For colds, we take our Tylenol, stay in bed, eat chix noodle soup, and suck on cough drops. For some of us, it is a means of survival. Money for medical care and insurance causes alot of us to dely treatment. Cash for services rendered is out of question because it is so high.

I really am not sure of what the answer is. I believe in healthcare for everyone, not just the wealthy. That is why I am all for NIH. It is not a hospital, but a research center. That way all of your medical care is free. It is funded by the drug companies & manufacturers.

I feel that accountability for those sick should be on the minds of those in the medical field. It shouldn't be financial and run as a business for profit. There goes the Hypocratic Oath.

But then again, this is my opinion only.

[Spirit Dancer]

Caregiver Burnout


By Dr. M. Ross Seligson
Being able to cope with the strains and stresses of being a Caregiver is part of the art of Caregiving In order to remain healthy so that we can continue to be Caregivers, we must be able to see our own limitations and learn to care for ourselves as well as others.

It is important for all of us to make the effort to recognize the signs of burnout, In order to do this we must be honest and willing to hear feedback from those around us. This is especially important for those caring for family or friends. Too often Caregivers who are not closely associated with the healthcare profession get overlooked and lost in the commotion of medical emergencies and procedures. Otherwise close friends begin to grow distant, and eventually the Caregiver is alone without a support structure. We must allow those who do care for us, who are interested enough to say something, to tell us about our behavior, a noticed decrease in energy or mood changes.

Burnout isn't like a cold. You don't always notice it when you are in its clutches. Very much like Post Traumatic Stress Syndrome, the symptoms of burnout can begin surfacing months after a traumatic episode. The following are symptoms we might notice in ourselves, or others might say they see in us. Think about what is being said, and consider the possibility of burnout.


•Feelings of depression.

•A sense of ongoing and constant fatigue.

•Decreasing interest in work.

•Decrease in work production.

•Withdrawal from social contacts.

•Increase in use of stimulants and alcohol.

•Increasing fear of death.

•Change in eating patterns.

•Feelings of helplessness.


Strategies to ward off or cope with burnout are important. To counteract burnout, the following specific strategies are recommended


•Participate in a support network.

•Consult with professionals to explore burnout issues.

•Attend a support group to receive feedback and coping strategies.

•Vary the focus of caregiving responsibilities if possible (rotate responsibilities with family members).

•Exercise daily and maintain a healthy diet.

•Establish "quiet time" for meditation.

•Get a weekly massage

•Stay involved in hobbies.

By acknowledging the reality that being a Caregiver is filled with stress and anxiety, and understanding the potential for burnout, Caregivers can be forewarned and guard against this debilitating condition. As much as it is said, it can still not be said too often, the best way to be an effective Caregiver is to take care of yourself.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
This is a great article but I cannot get two hours of downtime let alone a weekly massage,
how do others deal with caregiver burnout? When you alone do the caregiving 24/7
and you cannot afford a private nurse?

[Andrew, Jr.]

Caregivers have a special place in the next life. My hat is off to them. For example hospice workers. They are definitely angels.

[Passionaria]

Benefits of Acupuncture in Cancer Care



Here are some ways that acupuncture can help while being treated for and recovering from cancer.Cancer treatments are aggressive and cause numerous unwanted side effects as well as a lowered immune system. Acupuncture is an excellent adjunctive therapy in cancer treatments because of its ability to relieve pain, reduce side effects, accelerate recovery and improve quality of life.

What Acupuncture is used for during Cancer Treatment

Acupuncture provides a total approach to health care for people with cancer. It can be used to address many of the concerns that come up during and after chemotherapy, radiation, biological therapy and surgery.

According to the National Cancer Institute, acupuncture may cause physical responses in nerve cells, the pituitary gland, and parts of the brain. These responses can cause the body to release proteins, hormones, and brain chemicals that control a number of body functions. It is proposed that, by these actions, acupuncture affects blood pressure and body temperature, boosts immune system activity, and causes the body's natural painkillers, such as endorphins, to be released.

Areas that acupuncture has shown the most promise include:
Nausea and Vomiting
Dry Mouth, Night Sweats and Hot Flashes
Stress, Anxiety and Fatigue
Pain Management
Increasing White Blood Cell Count



Source: National Cancer Institute. www.cancer.org

[AtLast]

[QUOTE=Spirit Dancer;130150]Caregiver Burnout


By Dr. M. Ross Seligson
Being able to cope with the strains and stresses of being a Caregiver is part of the art of Caregiving In order to remain healthy so that we can continue to be Caregivers, we must be able to see our own limitations and learn to care for ourselves as well as others.



It is important for all of us to make the effort to recognize the signs of burnout, In order to do this we must be honest and willing to hear feedback from those around us. This is especially important for those caring for family or friends. Too often Caregivers who are not closely associated with the healthcare profession get overlooked and lost in the commotion of medical emergencies and procedures. Otherwise close friends begin to grow distant, and eventually the Caregiver is alone without a support structure. We must allow those who do care for us, who are interested enough to say something, to tell us about our behavior, a noticed decrease in energy or mood changes.

Burnout isn't like a cold. You don't always notice it when you are in its clutches. Very much like Post Traumatic Stress Syndrome, the symptoms of burnout can begin surfacing months after a traumatic episode. The following are symptoms we might notice in ourselves, or others might say they see in us. Think about what is being said, and consider the possibility of burnout.


•Feelings of depression.

•A sense of ongoing and constant fatigue.

•Decreasing interest in work.

•Decrease in work production.

•Withdrawal from social contacts.

•Increase in use of stimulants and alcohol.

•Increasing fear of death.

•Change in eating patterns.

•Feelings of helplessness.


Strategies to ward off or cope with burnout are important. To counteract burnout, the following specific strategies are recommended


•Participate in a support network.

•Consult with professionals to explore burnout issues.

•Attend a support group to receive feedback and coping strategies.

•Vary the focus of caregiving responsibilities if possible (rotate responsibilities with family members).

•Exercise daily and maintain a healthy diet.

•Establish "quiet time" for meditation.

•Get a weekly massage

•Stay involved in hobbies.

By acknowledging the reality that being a Caregiver is filled with stress and anxiety, and understanding the potential for burnout, Caregivers can be forewarned and guard against this debilitating condition. As much as it is said, it can still not be said too often, the best way to be an effective Caregiver is to take care of yourself.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~[COLOR="Navy"][B][I]
This is a great article but I cannot get two hours of downtime let alone a weekly massage,
how do others deal with caregiver burnout? When you alone do the caregiving 24/7
and you cannot afford a private nurse?



A very important post! I have been a cancer care-giver for 4 people in my life that I cherished and did lose. It was the hardest thing I have yet to do in my life and I did burn-out. In fact, I believe that some of my impatience with people now has to do with this. I see so much BS being attended to when people are dealing with this damn disease and other dibilitating health issues! My entire perspective on what really matters in this life has changed.

Changed my life, forever. A special hug and much gratitude for those of you that have been, or in this position. Always take time for yourself even if it is something very simple. So many now are having to do this due to not having resources.

[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

[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.