Archive for February, 2011

Being there when I needed you most

February 28th, 2011 - by Eric Byrne

Hi LUNGevity!

Thank you for sending the wristband. I will wear it with pride to any function, Lung Cancer conferences, meetings whatever.
It is me who would like to thank LUNGevity for being there when I needed you most, following my dx.

Each morning when I woke up, the first thing that came into my mind was “this cancer is going to kill me and in the not so distant future.” I never thought I would manage to shake off this fear.

Well, time does heal, doesn’t it?

You know quite honestly, that morbid thought was being replaced gradually as I continued to post in to LUNGevity’s Lung Cancer Support Community. Each morning I woke up(as I am doing right now, its 6.50am just about to head out for work) my first thoughts became, “wonder who has replied to my post yesterday? Wonder what they said? Hope I haven’t offended anyone with my occasional controversial remarks LOL!”
The real joy I derive from being here is being able to reply to someone who is having some problems with words of encouragement, that may lift that person somewhat. The other is of course, the Just for Fun Forum (Morning Air) that gives me the pleasure of sharing with everyone the joys of everyday living, and to learn from everyone, the culture of Americans in the broadest sense, and from me in whatever way I can to show you the Scotland I love.

God Bless,

Eric Byrne

Airdrie North Lanarkshire Scotland

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Katie Brown

What do you really know about Hospice ?

February 16th, 2011 - by Katie Brown

I’ve been asked recently to write about hospice and how that applies to those facing lung cancer.

The one thing I hear regularly is that people often wait until the last possible moment to call in hospice.

Recently there was a study that showed patients who entered hospice care earlier actually lived longer and had a better quality of life. http://www.nytimes.com/2010/08/19/health/19care.html This study showed patients who began receiving palliative care immediately upon diagnosis not only were happier, more mobile and in less pain as the end neared — but they also lived nearly three months longer.

There could be many reasons why a patient and their family waits until the last-minute to utilize hospice care but mainly, I think, it’s because people think that by calling in hospice they are “giving up” the fight against cancer.

That’s a tough one, especially when it may feel like you are giving up hope, but try thinking about it in this way.

According to the Hospice Foundation of America, hospice is a special concept of care designed to provide comfort and support to patients and their families when a life-limiting illness no longer responds to cure-oriented treatments.

Hospice care neither prolongs life nor hastens death. Hospice staff and volunteers offer a specialized knowledge of medical care, including pain management. The goal of hospice care is to improve the quality of a patient’s last days by offering comfort and dignity.

That is what we all want in our last days right? Comfort and dignity? I believe so. But what if we don’t recognize our last days or the last days of a loved one? What if there is no plan for hospice or agreement for when to enter hospice care?

THAT’s where stories about hospice teeter between being praising in nature or more like horror stories.

What can be done to improve our experiences with hospice care?

An open dialog about hospice between medical professionals, patients and their families is crucial. People need to know what hospice is, what they do and what they don’t do. They also need to be prompted by their medical professionals to ask questions, made comfortable enough to voice concerns and fears and there must be a frank conversation between loved ones. The patient needs to know that it is ok to enter hospice care, without being made to feel like it means giving up.

People need to know that hospice care can be done in your own home and when medically possible that patients can stay in the comfort of their own homes.

Make decisions concerning hospice before the patient ever reaches the need for hospice care. This is something all of us, with critical illness or not, should consider doing along with wills, living wills, power of attorneys and directives. Hospice care should be something decided upon early in a diagnosis.

Reiteration that hospice care is not giving up hope. There is always hope. There are those stories of people who have entered hospice, only to improve in their health and return to active treatment against their cancer and survive. It can happen.

Communicate with your hospice provider. Ask and get answers to all your questions. explain what your expectations are of them. Let them know what YOU expect of THEM and what is appropriate or inappropriate behavior according to your personal beliefs, religious views and morals.

Recently I read on LUNGevity’s Lung Cancer Support Community an amazing experience with hospice and how a hospice team made the final weeks of a patient’s life peaceful and memorable. The poster raved about how much support they provided to her family during those last weeks and how much that helped in their grieving process.

Another story I read about was how clinical and cold a specific hospice experience was. This patient had entered hospice care only a few days before he passed away and his pain management and care had been very technical and not very compassionate. The nurses spoke openly of his impending death to the family, in front of the patient, and his wife was mortified. It was not the peaceful or calming presence she had expected. She was sad that this was her husbands last experience and that hearing about his pending death and the process of his death was a terrifying experience for him.

I believe if we follow the principles listed above we can prevent the outcome of the second story and ensure the most peaceful experience possible with hospice.

Lung cancer can be a fast and furious disease. It’s the leading cancer killer with the highest mortality rate. The timeline from moment of diagnosis to hospice care can be very short so it’s easy to be caught in a whirlwind of decision-making and uncertain choices. As with anything in life, it’s good to be prepared. Talk to your families, write down your wishes and then spend every moment with those you love.

What is that saying? Prepare for the worst but hope for the best. The worst may take decades to reach fruition.

And never give up hope. The one thing I’ve seen in the past 8 years of being a patient advocate is MORE survivors.

At LUNGevity Foundation, they are funding lung cancer research so that even more people can survive this disease!

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Jill Feldman

Parentless Parents

February 15th, 2011 - by Jill Feldman

I am a parentless parent. Every day, every decision, every milestone, I feel the absence of my parents. I long for their guidance, support and especially for their influence and presence in my children’s lives.

The day my first child was born was very bittersweet for me. I had an induction date set for November 21st, so I was totally caught off guard when the doctor’s office called on November 18th to tell me that my induction was changed to the following day, November 19th. I calmly told the nurse that I wasn’t sure it would work and I would call her back. November 19th was my dad’s birthday.

At first I thought my husband was playing a joke on me, because that’s what we do in my family (use humor in difficult situations), but after he convinced me it wasn’t him and cautiously expressed his excitement I called my mom in tears. Knowing I struggled with losing my dad at a young age and after not having him for important milestones in my life, my mom simply said that it was ‘bashert’, a Yiddish word for ‘meant to be.’ She said that this was my dad’s way of telling me that he will be there for the birth of my baby. So, when I heard the doctor say, “It’s a boy,” I was grateful that my son was born on what would have been his grandfather’s 55th birthday.

My ‘grown up life’ was just beginning when my mom died. We had always been close, but I was beginning to develop and enjoy an adult relationship with her. I was in my 20’s and traditionally considered an adult but I still went to her for EVERYTHING ~ l needed my mom! She was my role model, my biological and emotional blueprint, my best friend. I needed her to guide me through the phase of being a woman, a wife and a mother. I was nine weeks pregnant with my second child when my mom died, but felt like a child myself. How was I going to be a mother without my mom? This time when I heard the doctor say, “It’s a girl,” the pain I felt was almost unbearable.

I was orphaned! I felt such fear and anxiety, like I was a child lost in the middle of nowhere and feeling completely alone. We live in a world filled with parents and children of all ages. Parenting is hard; physically when they are younger and emotionally as they get older. It’s even harder when you don’t have your own parents. Most people my age have at least one parent alive that they see and talk to frequently, spend a lot of time with and depend on for help, advice and babysitting. I’m not going to lie, it’s painful to watch. I have a lump in my throat and my heart aches with envy when I see my husband, friends and even strangers spending time with their parents. I’m especially sad for my children when I see my contemporary’s parents enjoying, building relationships and creating memories with their grandchildren.

One of the hardest parts about being a parentless parent is not being able to ask my mom or dad what I was like as a child or whether I was similar to any of my children. I don’t have anyone who could recall every minute of my life or share the cute stories of my childhood with my children. On the flip side, I can tell stories and share pictures about my parents with my children, but it will never have the same influence in their lives and they can never create the same relationship with my children that my in-laws have developed. That puts a lot of responsibility on me for sharing instead of passing down family history and traditions. My parents will never get to know and enjoy their grandchildren, and my children, except Jack who was a year when my mom died, will never meet my parents. It’s not easy, but it’s important to me that my children know who my parents were as individual people and the special qualities.

Being my own advocate and being proactive with my health is certainly a result of being parentless at a young age. Once I had kids it wasn’t about me anymore. It was about my children ~ I am their mom. Their lives would drastically change if their mom died. Knowing how it feels, I don’t ever want my children to suffer the way I have. Of course there are all sorts of other issues that come with being diagnosed with the same disease that took both of my parents, their grandparents, lives, but I’ll skip that part for now…………to be continued!

The grief and challenges of being a parentless parent are completely underestimated. It’s assumed that we’re adults and society expects us to accept death as part of life, get over the loss and move on. But, really we are just becoming adults, just becoming parents. It’s like playing a sport without a coach; the ability may there, but it is the coach that supports you, encourages you, gives you confidence and is the person to whom you owe much of your success.

I’m looking forward to reading a book that journalist and parentless parent Allison Gilbert has written. It’s called, Parentless Parents: How the Loss of our Mothers and Fathers Impacts the Way We Raise Our Children. The book explores how the way we parent is shaped by the loss of our own mothers and fathers. The idea came from responses to a part in Allison’s previous book, Always Too Soon: Voices of Support for Those Who Have Lost Both Parents that talked about her first parentless Thanksgiving. As I did in Always Too Soon, I expect to find comfort in knowing I am not alone and in being able to connect with other parentless parents.

Check out the trailer on you tube: http://www.youtube.com/watch?v=j0vYt8L7qNg Parentless Parents will be available in stores today, but you can also purchase a copy on Amazon.com

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