Has anyone seen Hope Haven?

The building seems to have vanished while I was putting away the Christmas decorations.

Chews nails ...

I HOPE Bora has a spare copy ...

Makeover models on show in Hope Haven

We've installed a viewer in Hope Haven where you can now see the 'before' and 'after' pics of the 'Makeover Magic' models. Come see.




Pictured above: Glenna Lane, a long-term breast cancer survivor and an active member of the cancer survivors group, after her makeover.

ACS unfolds plans to expand its support programs in SL

Stingray9798 Raymaker (the American Cancer Society representative in SL) is the first to acknowledge that he is a "noob", who once managed to delete an entire building. (You're not the only one, Sting. I managed to delete my house!) But his vision of how ACS will evolve in the future is far from rudimentary.



Speaking at Nonprofit Week last Thursday, Sting used the opportunity to unfold ACS plans to expand its support group program in SL to match its RL programs, as well as offering help and advice to other nonprofits.

He first outlined the current programs on the American Cancer Society sim, including The Hope Haven which he described as "the cornerstone of how the ACS provides much needed support for cancer survivors who live in Second Life", the "Makeover Magic" program which is scheduled to happen twice in 2009, and a breast cancer education and awareness program based on the real life Making Strides Against Breast Cancer program.

New projects include the Media Library, where avatars can browse resources of information, and a new series of lectures on cancer information organized by Ren Stonecutter, a RL physician who is already a popular speaker on the island.

Forthcoming plans include a support group (Man to Man) for men only, and another program, Reach to Recovery, for breast cancer survivors to “mentor” newly diagnosed breast cancer patients.

Another, more aggressive plan involves access to the ACS's National Cancer Information Center. The NCIC consists of cancer specialists who currently answer all phone calls (24/7) to the ACS toll free hotline…1-800-ACS-2345. Emphasizing that this is still in the very early stages of development, Sting continued: "If this project is rolled out, we would be able to provide immediate information and resources to cancer patients and loved ones in-world just the same as we do when they call on the phone in RL. I do not mean to create an expectation that this will become available in the near future - but it is one of my pet projects that I will work diligently on because the need is so great."

In closing, Sting offered the following thoughts to nonprofits and also mentioned that ACS will in future be offering its meeting spaces to nonprofits who do not own their own sim:

"Since entering Second Life, the American Cancer Society has existed on the support of one staff person and countless volunteers. Our budget allocation is minimal, at best, and we exist primarily because of generous volunteers who donate their time and talent.

"The key to our success has always been the organization’s willingness to support and legitimize our volunteers’ efforts. It shouldn’t take a lot of money to exist in SL, if you stay true to the mission of your organization."

Orange Island and the Nonprofit Commons teamed up to present Nonprofit Week which was held from Monday, January 26th to Thursday, January 29th.

Looking good helps you to feel better

Aryon Dagger was one of the survivors who was given a totally new look as part of the Makeover Magic program. She has blogged her experiences on -

http://christhebutch.wordpress.com/2008/11/04/a-new-life-and-a-new-look/#more-387.

Her story reminded me of a time, long ago, when I had a recurrence of thyroid cancer. I came out of hospital with an embarrassing large red scar across my neck. Without my asking, a friend scooped me up and took me shopping. We found some pretty, high-neck blouses. Her gesture helped me hold my head up and look life in the face as I went through the next stages of treatment and waited anxiously to hear if it had spread. The scar has faded, and I'm disease-free, and my friend has moved on. But her action touched me deeply and the memory will always stay with me.

I love your new look Aryon, but above all I love you as a person. Thankyou for reminding us that it is not the new look alone, it's the friendship, the listening, the understanding, and above all the acceptance that counts. That helps us to feel better about ourselves.

And that's what the American Cancer Society's real life program - Look Good, Feel Better - is about too. For more information about this program see:

http://www.cancer.org/docroot/ESN/content/ESN_3_1X_Look_Good_Feel_Better.asp?sitearea=SHR.

Never give in, never, Never, NEVER

Suzetta Moonites kicked off the new "Fighting Spirit" series of meetings organized by SL's Cancer Survivors Group in Hope Haven on Sunday September 28 by describing her personal experience of childhood leukemia. How she fought it then. And about how she is still fighting, by advocating for improved follow-up of children who were treated with radiation.

Suzetta speaking to a full house in Hope Haven on the American Cancer Society island. She is standing next to a statue aptly named "The Survivor"

Her story began when she was 8 years old. Her teacher (Mrs. T) noticed that she was unable to make it upstairs without being severely out of breath. She told Suzette's parents what she had noticed. The day after that, she went to see her pediatrician. During his examination Dr. P noticed that that her lymph nodes were swollen in the groin, under the arms and behind the ears. She was in the hospital in New York the next day - after a few more routine tests the doctors there confirmed a diagnosis of childhood leukemia. Her doctor explained that there are three types of leukemia - the very bad, the middle kind that goes away but sometimes comes back - and the good kind. She had the 'good' kind.

She had chemo for four years and was also placed in a nationwide childhood cancer study. They formed two groups based on the trial that included those who would have the radiation and those that would not. Suzette was placed in the group that was given the radiation.

Suzette believes she was spared the worst side effects of the chemo because although her doctors and family explained what was happening, they didn't tell her she could get sick. So, she didn't!

"I remember mom telling me that I had too much soda and thats why my tummy hurt. I can still see her rubbing my stomach saying let's go to our special beach place and dance. I never knew it was from the chemo ... that year I learned that Love and Laughter were the best medicine." Her doctor asked her because of her "spirit" to talk with other children in the hospital. So they could see how she looked and "my theory that I had cancer but cancer doesn't have me". After four years she was declared cancer free!

But that wasn't the end. When she was 25 her doctors found a meningioma (brain tumor) which was found to be wrapped around her brain stem. That was when her specialist Dr S told her that this was found to happen to 1% of childhood leukemia patients. It was a traumatic discovery. However, she was more shocked by the fact that her doctor knew and didn't warn her what to look for. She changed doctors and had surgery three weeks later.

"Was I mad - yes but not at the cancer, and not at the tumor. I was angry that I wasn't told what could happen. I was angry that when I complained for the past years of headaches I wasn't warned."

The surgery went pretty well. But later on she had a recurrence.

"I find as an adult you want more information about what's happening to you. I can tell you that the first surgery went really well because I didn't have time to find out. The second one although I wore a smile, I was scared because I went to the library ... As an adult sometimes knowledge can scare you to death. However, my family and friends told me to fight and not give up because I never have before."

The surgery and radiation went well although the tumor couldn't be removed completely. She didn't let anything keep her down, even knowing that she was going to have to live with this in her head. She now lives a "watch and see kinda game".

She was still angry about not being warned. So she decided to get the word out, writing to the newspapers to let people know what could happen, the signs to look for. She wanted to share her theory for recovery with others and raise awareness and funds to help as well. She contacted the American Cancer Society and they told her about an event for the community called Relay for Life. She started a small group of 11 people and they travelled to participate and that event raised $25,000. This year will be her 12th year with Relay for Life. Her hometown is the host of the event, last year they raised over $120,000 and saw 2 other Relay events split off from us that raised well over $100,000 each.

Suzetta says she was especially inspired by a Relay video that she first saw where a teenage girl said that it isn't just about recovery or the battle with cancer ... "it's also for your spirit to know that no matter what, we should "Never Give In..... never, Never, NEVER!"

Why Fay Fights ... One Step at a Time

When Fayandria Foley came to Hope Haven to lead a "Fighting Spirit" session on December 20 we had another big turnout - and not only of cancer survivors. Because Fay is not only a survivor herself, she is also Chair of SL's Relay For Life. It was a very timely session to lead in to the kick-off for SL's Relay For Life 2008. And this year's Relay is about Fighting Back.

Fay went to the doctor to check out a small "freckle". When she heard it was melanoma she thought she was going to die, that cancer was a death sentence, and that she didn't want the pain and loss of dignity that she associated with cancer. She had, she says, NO fight in her. She was ready just to sit in a chair and wait for it to happen. But she learned that while it WAS once a death sentence, medical research and technology have taken huge strides forward. Now she's optimistic. And she knows that she doesn't want to die.

Fay doesn't really consider that she herself has fighting spirit. When she was going through treatment, she was simply following a path set out by her doctors. "Right foot, left foot, right foot, take the pain, make it happen ..." But she went on to say "I'm living with cancer, facing what I have and where I'm going. I'm fighting for you, my children, your children, and when it comes down to it I suppose yes I am fighting for me. What made the difference, what got me out of my chair? It was YOU. Thank you for sharing your stories, your life, so that I had a reason to get up and keep going."

Fay's advice for someone who faces the diagnosis of cancer or indeed any catastrophic disease is " ... to look deep inside yourself and see what matters ... to me it's not the house I live in or the car I drive, it's about my friends, the ones who held me when I got my diagnosis and helped me through each step of the treatment. It's about how the children I know will live their lives out."

And above all, she said, "Cancer gave me the motivation to Relay. we have to go out, fight, do battle. My chicken way of sitting in a chair and waiting won't help us win. Relay is a point of meeting, taking, doing, actively participating, getting money for research, and getting money for getting information out there. When you know in your heart that you and your caregiver are facing this thing together Relay gives hope, communication, strength... it also increased my spirituality, made me realise there is a reason why everything happens, why we're walking this track... It's not *my* cancer, it's cancer, and we're going to tackle it together ... "

hmmmm --- if that's not "fighting spirit", I wonder what is?

If you would like a complete text including the Q&A session please IM me, Poppy Zabelin, in Second Life.

Trader fights back

In the latest of our "Fighting Spirit" series, Trader1 Whiplash of T1 Radio and Relay Rockers came and talked to cancer survivors and caregivers in Second Life about his personal fight with leukemia.

Trader is often called "the Voice Of Relay" in Second Life, and I have often heard him speak, but never before quite so passionately and personally.



He was diagnosed nearly five years ago. An enthusiastic golfer, he was diagnosed as a result of a routine sports medical when he signed on at a gym. After being given the scary news he was then told that it wasn't treatable... because it was too early... he lost his drive at work, his appetite, his girlfriend... and became seriously depressed.

The turning point was when other friends and family were touched by cancer. "We all have to find a source for our strength and mine comes from knowing that no matter how lousy I feel someone feels worse, that no matter how bad my cancer is someone else's is worse. When people offer me their prayers I ask them to send them to someone who needs 'em more than me." It was also around that time that he joined Relay For Life in Second Life and found a way to channel his energies into fighting back. When his white blood cell count got into the range that it needed to be treated, he was ready for his own personal battle, claiming that "...Chemo Sucks but its a lot better than the alternative. and hell, i have had worse hangovers!" (I HATE to think what those hangovers were like!)

Trader is in remission now, but he knows the importance of being surrounded by people who are there to support him through treatment. The nature of his leukemia is that in a few years he'll need treatment again. But he has learned to live with his cancer and is meanwhile back in pursuit of that one-digit golf handicap. "While I don't embrace it we have an agreement.. DON'T stop me from being me and I won't bitch about having it."

He ended with these words: "It's NOT easy to live with cancer.. and it's even harder to fight it, but as long as you have the ability to do so then damn it do it! JUST DO IT! the grass is a whole lot prettier when you are lookin down at it!"

Fighting Spirit

Our first support group session in the "Fighting Spirit" series was a success, with Cruiser Gilman leading the discussion and talking about how he fought and won his battle with esophageal cancer, accompanied by his partner Zzeee Zaftig who is also a cancer survivor. So I have hopes that this formula will be a successful one going forward.

We have two sessions already scheduled in November:

Friday November 9 at 2 pm SLT - breast cancer survivor Artistic Fimicoloud will talk about the healing power of art and explain the message and content of her pictures - in the open air exhibition outside the Auditorium. FREE T-shirt for everyone who attends.

Thursday November 29 at 4 pm SLT - Erb Enoch talks about his experience as a male breast cancer patient - this will be in our usual venue, Hope Haven on ACS island.