Tuesday, December 30, 2008
And a Happy New Year to y'all too!
Sunday, December 14, 2008
There are a number of factors which put men at increased risk, said Dr Stonecutter, including Jewish ancestry, previous (benign) breast disease, gynecomastia (enlarged breasts), hormonal imbalances, alcohol, celibacy, and a history of liver or testicular disease. He recommended that men protect their 'family jewels' when playing sports or other dangerous activities as injury is another risk factor. And he pointed out that genetic factors are also important - men with a positive family history of breast cancer have an increased risk of 15-20%.
He recommended that men at increased risk should check their breasts regularly or have their significant others do it for them, just like their sisters and mothers, and that men diagnosed with male breast cancer should have genetic testing and counseling for their family members. But all men who find a lump should take note, he said, as the majority of men who are diagnosed have no identifiable risk factors.
Male breast cancer usually presents itself as a small, painless mass just under the areola (the brown area around the nipple), he said. The first step on finding a lump is to get a mammogram. And "when in doubt, TAKE IT OUT!". Male breast cancer is so rare that many local community oncologists will see only one or two cases in their entire careers, so he recommended that men with advanced breast cancer should go for treatment to the big cancer centers or universities, such as Memorial Sloan Kettering, or the National Cancer Institute.
Dr Stonecutter is a regular speaker in Second Life and a real life family physician.
As you can see from this picture, many of Kay's fellow survivors who have walked this journey turned out to celebrate with her, along with members of the ACS and Relay for Life community.
There was an evening of live music, including Kay's RL daughter Kim Seifert (pictured above)who is one of the most popular live singers in SL.
Although Kay has announced her intention to close the Tiki Lounge she still plans to be an active and involved member of the Cancer Survivors group at Hope Haven and of Relay for Life.
Sunday, November 23, 2008
Willow Lundquist, new Cancer Caregivers chair, held a party on the ice for the caregivers in celebration of the fact that this is National Caregivers Month in the USA, and invited the survivors group to join in.
Willow Lundquist, the new Caregivers Chair
The party was held at Stormy Dragon which is run by Stormy and Dragonlord Moonlight. As you can see, we all skated brilliantly - thanks to their trick skating pose.
Poppy (L) and Cinders (R) dressed up to keep the winter winds away
There is much more to see on Stormy Dragon and it is one of the most tranquil spots in SL. Stormy has very kindly invited the caregivers and survivors to visit her land at any time.
Friday, November 21, 2008
So it was with some trepidation that I stood on the steps of the London Oncology Clinic in Second Life, because it, too, is in Harley Street. The green door somehow looked SO familiar ...
I pulled myself together, went inside and saw that the waiting room was on the other side of the corridor from 'my' consultant's practice, and the decor was different, and somehow that was a relief. I went in and sat down, glancing - as I remember doing all those years ago - at the magazines on the table, and immediately heard my mother's voice echoing in my head, saying 'young women don't cross their legs like that!'
The other avatars in the room were not very communicative so I went exploring further.
I smiled at the fact that although the Clinic is in London, the floors are numbered American-style.
Up the stairs, to the 'second' floor, and ... oh boy, turned left straight into 'my' consultant's room. I sat down on the same chair that I remember sitting on so often. Glanced over to the modesty screen in the corner with the examination couch behind it. I remembered my consultant telling me after several visits that he thought he had been mistaken in his initial diagnosis and so he was referring me to an endocrine surgeon at the nearby Middlesex Hospital. And how I felt a strange relief, that he was taking my symptoms seriously, and something was at last going to be done.
Down the stairs again (am I the only one who dislikes elevators in SL?) into the basement and the treatment center. I said 'hi' to the receptionist, Eliza, who wasn't very communicative, either, and walked through to the cubicles where several patients were having treatment.
I noticed that one of the patients, Dexter, was using his laptop. Others were reading, or chatting with the nursing staff. It was all pretty laid back.
By this time I was feeling quite at home so I tried sitting in one of the treatment chairs.
In real life, the London Oncology Clinic is a private clinic that was set up in 2005 and offers a high level of cancer treatment by over 20 top oncologists, many of them internationally renowned, and most of whom practice or have practiced in the National Health Service in and around London. This representation is designed to help patients and/or their carers to get to know the clinic before attending and to help reduce the stress of the experience.
This is a great initiative, although I could think of some tweaks that would make it work still better, such as, making better use of the robot avatars to explain what is happening, and notegivers to explain the purpose of each area or a running commentary on the audio stream.
To tour the LOC go to:
Thursday, November 20, 2008
Sunday, November 16, 2008
And here is Namro Orman's photographic record of the session:
Wednesday, November 5, 2008
Professors Hortobagyi and Conte answering questions over a live video stream put to them by physicians and others attending the conference at the Virtual Cancer Institute.
M Linden addresses the inworld conference
Later, M Linden (Mark Kingsdon , CEO of Linden Labs) addressed the conference. He spoke enthusiastically about the important work this group is doing and about the increasing use that is being made of Second Life by health care providers and educators.
This was a good example of how virtual medical conferences can work. I've attended many real life medical conferences in my previous role as a scientific and medical publisher and the experience was very similar, except that this time, I could type my questions in the 'chat' box from the comfort of sitting at my own computer, or take a discreet break and refresh my coffee when I felt like it. And of course it saves on travel and accommodation! The one drawback is that you can't meet your colleagues face to face during the breaks, but you can always IM the other delegates and make new contacts that way.
The conference still has two days to run. For more information and a link to the detailed program, see my earlier blog piece: http://poppyzabelin.blogspot.com/2008/11/virtual-breast-cancer-conference-in.html
SL residents can follow the conference in real time at the Virtual Cancer Institute on the ISN Visions sim today, Thursday and Friday from Midnight to 10.30 am SLT.
The Virtual Cancer Institute in Second Life
I sat in on some of the first sessions and was impressed to find that the program features some heavyweight names, including experts from the United States, United Kingdom and Switzerland.
Professor Luca Gianni (Head of the Medical Oncology A Division of the Istituto Nazionale dei Tumori, Milan, Italy) was one of the speakers. He spoke live from Modena about gene profiling of breast cancer to a mixed live and virtual audience.
Most of the program is targeted in the first place at physicians (oncologists, radiologists and surgeons) but there is a Q&A session today at 9 am SLT (18.00 local Italian time) that should be of interest to other health professionals and to anyone whose life has been touched by cancer. ISN Visions has also announced that M Linden - Mark Kingdon, CEO of Linden Lab - will be joining the guests later today, at 10.30 am SLT (19.30 local Italian time). It is being held at the Virtual Cancer Institute (Teleport:http://slurl.com/secondlife/ISN%20VISIONS/194/106/34).
Hyoozan Hax, the Virtual Activities Manager in SL for ISN, told me that this is the second virtual cancer conference that the island has hosted, but this is the first time that it has been held in English.
The full program can be downloaded at:
Tuesday, November 4, 2008
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:
Minnu Palen & Thora Charon - MM Skins
Hair & CachetMaddox Dupont - KMADD City & MADesigns Shapes
Nicky Ree - Designing Nicky Ree
Rosemary Galbraith - M&R CUPCAKES
Mavis McGettigan - Skin Flicks
Blaze Columbia - Blaze*
Torrid Midnight - TorridWear
Fallingwater Cellardoor - ShinyThings
Machang Pichot - AOHARU
Onyx LeShelle - Maitreya
Annyka Bekkers - Blowpop
LeeZu Baxter - LeeZu Baxter Designs
Lion Jonesford - Lion Skins
Barbara Nicholls & GM Nikolaidis - Spork
CheerNo Destiny - a.C Store
Scar Ayres - A. D. Studios
All of the designs were great, but I want to make special mention of Lion Jonesford. One of the fashion mentors passed along the information that this event was special to Lion because she lost her real life sister recently to cancer. Her Suzana skin is designed in her sister's memory. Lion, we appreciate what you do for us, and understand your pain. You are our hero.
Monday, November 3, 2008
As Jeff Montegut, who as Stingray9798 Raymaker is the ACS Strategic Director in Second Life, said: "The American Cancer Society plans to utilize the virtual office no differently (in concept) than any other office in any other city... the same services that are offered in a real life office should be available to the Second Life community, because there are real people facing real issues behind each and every avatar. The American Cancer Society recognizes that, and fully supports our volunteers in Second Life."
There was a festive atmosphere, with quirky Japanese-style lanterns lining the canal and the paths that people could light to honor a loved one who is facing cancer or who has passed on. And, importantly, the Tree of Hope and the Survivors Wall (this time, redesigned as a 'Walk') returned to the island!
Lanterns line the pathways and the Tree of Hope can be seen in the distance
Volunteer greeters were situated around the island to give tours and to explain the various activities that take place there.
Then we moved on to another kind of 'makeover'. Five survivors were nominated for an avatar fashion makeover, see: http://poppyzabelin.blogspot.com/2008/10/makeover-magic.html. Trader1 Whiplash hosted a panel discussion on T1 Radio with the chosen survivors, who modelled their outfits later in the morning in the fashion show "Makeover Magic", along with their fashion mentors. The makeover program was sponsored by FACES, led by Aradia Dielli and Serenity Nerd, and with Cinders Vale responsible for the liaison between the survivors and the FACES team. The program was supported by a host of top flight designers who donated skins, outfits, hair, shoes, and jewelry for the makeovers.
Evus Alter, who was one of the survivor models, sent this note to the Makeover Magic team after the event: "To everyone who organized the event: You have no idea have much respect I have for each of you. All the talent, time, effort that you placed into it! Thank you. To my mentor, Scar, what a wonderful human being! To have someone, half way across the world, doing something so nice for a total stranger – truly touched me. To all my fellow survivors: I am so honored to have this connection to you."
For a list of the designers who took part see my next blog:
The ceremony finished with a wonderful firework display courtesy of Racerx Gullwing.
Thursday, October 23, 2008
"As for me--I am an emeritus caregiver---having had two in chemo simultaneously in the 90's. I have also been a therapy dog handler---you may have seen me at the last RFL---I was the boxer. Feel free to IM me if you need to talk and I am online., please."
Saturday, October 18, 2008
The official ACS representative in Second Life, Stingray9798 Raymaker, will talk about the ACS future plans in Second Life, and the program will include a "Makeover Magic" fashion show sponsored jointly by the ACS and FACES.
Cinders Vale, the official liaison with FACES, and I, were both treated to a fashion makeover last year and we took part in the fashion show at the official opening on September 23 2007, so we know just how exciting and special it is to be pampered in this way. This year's show features five members of the Survivors Group, along with their fashion mentors, so be sure to come and support them!
The makeovers program is the Second Life equivalent of the ACS "Look Good, Feel Better" program, a free, community-based service in the USA that helps survivors to restore their appearance and self-image during treatment.
See also Cinders' blog: http://www.relayforlife.org/relay/node/4280
Below, the spectacular invitation (designed by MamaP Beerbaum) and an aerial view of the new island.
Tuesday, October 14, 2008
I wasn't able to be at this session myself but I heard from some of the people who attended that it was a truly inspirational story, and Aryon shared her talk with me.
She was diagnosed with stage 3 breast cancer in 2001. The advice: a double, radical, bilateral mastectomy. "I sat there and went numb, became a robot of sorts in my responses, got up and walked out ... I phoned the one person in my life that I needed most right then ... my wife. My life flashed in slow motion before my eyes but it wasn't over yet."
Aryon made the choice to fight. To "... stand toe to toe with it, stare it in the eye and tell it where to go ... I wanted to see my son happy, to hold my first grandchild, to spend time with the woman I loved enough to leave my life as I knew it behind and move to a place I had never been to before."
Aryon's partner loved and cared for her, but she couldn't face the scars and Aryon never knew why. She passed away several years later. "My wife never got to hear the "all clear" given to me. But I fight on, to repay the debt I incurred by bargaining. I fight on by trying to make women AND men aware of this tragic killer that if caught early enough, can be treated."
She came into Second Life to heal from the loss of her wife of 26 years, and from the immense trauma of fighting the breast cancer. It was several years before someone other than a doctor, nurse or Aryon herself actually touched her scars. Not only touched them but looked at them, and said the words that she had said many times before, without having seen them … “it doesn’t matter”.
Aryon considers herself to be one of the lucky ones. "I don’t know why one person wins their battle and another loses it. But I do know that everything happens for a reason ..." So now she shares her story, in the hope that by making people aware, she is serving a purpose. And she now takes pride in her scars and campaigns through her blog for lesbian women to 'get to grips with their nips" because, as she writes there, "... lesbian women are almost twice as likely to suffer from breast cancer than women generally". See: http://christhebutch.wordpress.com/2008
She concluded her talk: "If through my survival, through my standing here and speaking to you all today, through my fundraising in the name of breast cancer awareness and research ... I can save one life ... by making someone aware of regular self examinations, of regular mammograms ... then I will be happy but not fulfilled. We MUST find a cure. So, I will continue to battle, wearing my scars like a medal won in a war, for life ... mine and everyone elses."
Sunday, October 12, 2008
Moonshade was moved to devote her Editorial to breast cancer because her mother is a BC survivor of 18 years. Quoting from the American Cancer Society's website, she writes: "An estimated 182,460 new cases of invasive breast cancer are expected to occur in women during 2008; about 1,990 cases are expected in men." She refers readers to Tam Hyun's notecard display on breast self-examination to be found on HealthInfo Island.
Moonshade concludes her article with the words: "Let's all be aware in October and year-round, so we can then celebrate the increasing numbers of breast cancer survivors."
The magazine also includes a contribution from me on "Artistic Fimicoloud - An Inspiration to Breast Cancer Survivors" and three pages of pictures taken on the ACS island and at Fimi's gallery.
Thanks Terrell and Moonshade for raising awareness for this important issue.
Wednesday, October 1, 2008
Also on this theme, Vera Zhaoying who is a student intern at the Anne Myers Medical Center (AMMC) is organizing a breast cancer awareness event called "Time for You" on October 11 at 10 AM. It is at the woman health clinic, AMMC. Please contact Vera for details.
Tuesday, September 30, 2008
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.
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."
Wednesday, August 27, 2008
It was hard, very hard, to single someone out. Each and every one of our Survivors Group as well as all our unnamed survivors deserves an award for the way they deal with their cancer. But I reviewed the names with Marissa Goodliffe, who runs the Caregivers Group, and we came up with two names. Two very special people who each in their own way are an example to us all.
We decided on giving the awards to LadyKay Gable and (posthumously) to Artistic (Fimi) Fimicoloud.
As many of their friends were unable to attend the wrap-up party, we held a separate party on Sunday, August 24, in the new Hope Haven on the new American Cancer Society island.
LadyKay Gable, or Kay as she likes to be known (above left) is a very special lady. A long term breast cancer survivor who is a regular and caring participant in our peer support meetings, she is devoted to Relay For Life, and above all a team player.
When Marissa and I were up to our ears in the preparations for the survivors and caregivers art auction for the halfway there fair, she stepped up to help, as she has helped in countless other ways throughout this past year. She has, quite simply, a heart of gold.
Artistic (Fimi) Fimicoloud was not able to Relay with us this year because she is sadly no longer here. But so many of us relayed for her and she has touched and inspired so many people both in first life and second life that we wanted to make this award posthumously. And I am delighted that so many of Fimi's friends (pictured above) from the Park Gallery, the Passionate Redheads, and the Sunweaver Islanders were able to join us for the presentation.
Fimi, as she liked to be known, had advanced metastatic breast cancer. She knew that she would have a tough battle. And she chose to fight it with her paintbrush and crayons. Her painting kept her from spending every moment wondering if her disease has spread to this part or that. Instead, her mind was filled with thoughts on how to portray the nature she so loved.
Although I am quite sure that Fimi knew she was dying, she was able to set it to one side and focus on her art and her family and friends to the last. She taught us quite simply ...
... how to live.
After celebrating we visited the new 'heroes gallery' memorial on the ACS island, where Fimi's friends paused at the memorial to Fimi and placed the award by her picture.
Friday, August 15, 2008
Freya set out on a journey around Second Life. She first visited Synergy Devonshire and myself in Hope Haven where we talked about the activities of the Cancer Survivors Group. She went on to visit the Heron Sanctuary, where she interviewed Gentle Heron and Pecos Kidd; Healing Hands, which is headed by Kaznats Oh, where people in the last stages of their life can spend time with friends and family without the restriction of their hospital beds; and Ouchies!! - a support group for and by people suffering chronic pain, led by Gemini Glitter.
Freya concludes: " What strikes me the most about all of these groups is how positive the environment they provide feels. I can certainly see how one could benefit in many ways by being in the presence of others with such passion and impetus for their cause. Of course I was only able to touch on a handful of groups on my short tour, but lucky for us, and others we know, the path of support us much much longer."
I learned a lot from the article, including the fact that our groups have much in common in the way we reach out and provide both informational and emotional support. And I'm sure we can continue to learn from each other. Thanks, Freya, for drawing attention to this important way in which Second Life can make a difference!
Friday, August 1, 2008
Thanks Dwen for sharing. (And I like the cap!) And here's a link to Dwen's blog on the Relay for Life website (you will need to register if you haven't done so already).
Saturday, July 26, 2008
Sunday, July 20, 2008
My camera controls froze so I couldn't take pictures of the lap itself, but here are the pictures of the survivor camp and starting points.
This was one of the nine survivor starting points around the 35 sims with those amazing survivor cherry trees in the background.
Flash and Poppy get ready for the opening lap
Cinders gets her skates on ...
Above two pics show some of the 80 survivor pictures lining the walk
Gone, but not forgotten ... these luminaria pay tribute to our survivor heroes, many of whom walked the Survivors Lap with us last year.
Saturday, July 19, 2008
For more information see: http://www.rflofsl.org/
Thursday, July 17, 2008
The survivors and caregivers are honored to walk the opening lap, which starts at 11 am SL time on Saturday.
Pre-registration closes today and Dwen Dooley, who has set up an awesome registration form on the web, emailed me yesterday to say we have 119 avatars signed up. That's already around twice the number who took part last year, and we're expecting more to register today, so we're very very relieved that we now have eight starting points and can avoid lag as far as possible.
This year we also have a team of greeters, coordinated by HollyJean Allen, who will answer questions, give out T-shirts, and generally help everyone to have a memorable experience.
Stella Costello has done an amazing job of designing and building us a survivors campsite, and Barnesworth Anubis has built us a walkway to display around 80 survivor pictures which were collected by Harper Montgomery. Stella and Barnes are two great designers who know how to combine bold lines and simple but very effective colors and I am just SO excited about it opening for the public. Come and see us there when you're in world, on the Heroes 3 sim.
Elizabeth Antonelli is responsible for collecting the music which is played on T1 Radio during the Survivors/Caregivers Lap and at other times. SL's musicians have donated 17 'Songs of Inspiration'.
Meanwhile, Marissa Goodliffe and I have been putting the finishing touches to the starting points and we're preparing a gift bag for the survivors and caregivers.
Getting ready for this year's Relay has already been a memorable experience. I've made so many new friends. I've laughed, and I've cried, with survivors who have contacted me in the past few weeks to ask if they can join us on the lap. I've heard so many touching stories.
Come and cheer us on, on Saturday, and don't forget to get to the sims early. The opening ceremony is at 10 am and will be streamed throughout by T1 Radio. And if you are a survivor or caregiver, contact me (survivors), Marissa Goodliffe (caregivers) or Dwen Dooley (registration) to find out how you can take part.
Monday, July 14, 2008
The main purpose of Relay is to raise money for cancer research, and to find a cure. But my personal reason for relaying goes beyond that, to reaching out to the many many people who hear those words 'I'm sorry, we found cancer', providing support where possible, and to making support services more visible.
Organizations such as the American Cancer Society do more than raise money for research, they fund valuable support and advocacy services such as the Cancer Survivors Network, and promote programs such as "Look Good, Feel Better" (for breast cancer survivors), "Man to Man" (for prostate cancer survivors) and the Cancer Advocacy Network.
So that's why I relay.
Here's a link to what I wrote:
Friday, June 20, 2008
Tuesday, June 10, 2008
Synergy Devonshire helped with setting out the works and LadyKay Gable jumped in along with some of her friends to set up the silent auction, which turned out to be more of a challenge than we had expected getting the auction scripts to work. Marissa Goodliffe built the auctioneer's podium and with the help of live auctioneer Chase Marellan we managed to raise over $L300,000! WOOT!
Monday, May 26, 2008
While we fight away our tears, let's remember that Fimi was an inspiration, a true fighter, who touched everyone with her ability to enjoy life and have fun during these last precious years, and her work and her ideas will live on.
The following words are from her poem Arms Open Wide, which she read at the ACS dedication ceremony last year.
"For I walk hand in hand with that which life
Has dealt me, thanking the universe for every step I take.
Where once I stood in fear and terror
Of not knowing what life would bring,
Now I stand arms open wide."
The dictionary definition of a sojourner is "a temporary resident". Well, "Soj", as we knew her, certainly made a difference during her sojourn in Second Life. We are already making history in SL. And Soj's name deserves to be writ large in that history. Soj, who was a multiple stroke survivor, was the founder of Dreams, and organized the Dreams Community Fairs ... SL cancer survivors held a panel discussion about support groups in SL at the third Dreams Fair in April this year.
The many tributes to "Soj"
My thoughts go out to her husband and son.
Here are a few of the growing number of tributes on the web:
In memory of The Sojourner (Amalthea Blanc)http://www.flickr.com/photos/tealthea/2523597470/The Sojourner's Last Voyage (Gwynneth Llewellyn)
The Sojourner Has Died (Polysilox)