Holding on to your dreams

This weekend I chaired a panel discussion at the Dreams Community Fair about the value of support in Second Life for people with cancer in real life. With me were Chel Norfolk, Flash Alcott and Ishtar Roux, three cancer survivors in different stages of their treatment, who shared their personal stories and talked about what support means to them. And we were supported by several members of our cancer survivors group who were in the audience.

From left to right: Ish, Flash, Chel, and Poppy

All of our speakers agreed on how difficult it was to tell friends and family in RL when they were first diagnosed. And two of them have direct experience of being supported through their treatment by the friends they've made in SL, and by the support group that meets weekly in Hope Haven.

Chel, who is studying for her PhD, has only recently been diagnosed with cancer and is still discussing with her doctors what is the best course of action to take in her treatment. When she first heard the news she walked around like a zombie for the first few days. She ended up telling a friend in SL who suggested coming the cancer support meetings . At first she was very angry " ... wanting to cuss up a storm yelling at everything". But now, she says, "If it wasn’t for my friends in SL and the support group in Sl I don’t know if I would of had the strength I have to make the decisions I have made I thank everyone of them. I haven’t told many in my RL due to my need to keep my health very private. However those that do know are very supportive and I thank my lucky stars to have everyone of them."

Chel is determined to continue her schooling and to fulfil her love of travel. "I hold on to those dreams. Someone once gave me a keychain that said 'Those that dare to can make a dream come true' ... those are very strong words to me ... this is one of my strengths to look forward to my dreams."

Flash Alcott is now a regular participant in the weekly support meetings and has helped facilitate these sessions, but he describes himself as "... a very .. intensely .. private person" who found it very hard at first to share his cancer diagnosis with anyone. The first two people he told were the father of one of his daughter's schoolfriends, and the "young, hip" hospital chaplain with whom he now has coffee every couple of weeks. And the third?

"Several months ago I 'happened' upon the American Cancer Society Island. It was late one evening and I ran into something that charmed me -- little paper bags with illuminating candle inside (OK, SL versions of these things). You could dedicate a 'luminaria' to a loved one lost to cancer. Anyway, I was 'lighting' one for both my mom and dad and another avatar floated by. I told her I was touched by the simplicity and beauty of these things -- and we started talking. She was a great listener and pretty soon I was sharing - with an avatar I'd never met (and I'm not even sure if I even bothered to look at her profile) - incredibly private stuff about my health. I talked her ears off, I suspect ... but she listened. And she gave me suggestions about things to do, people to talk with. That person - you might have guessed - was Poppy ... All of which led me to a suggestion she made -- becoming involved with the ACS Second Life community. A community that has become one of my strongest sources of support."

(ahem ...)

Flash is now in the middle of his treatment and went on to say "... what I've learned from these people is that human contact is so so so terribly important. That we need to help each other."

Ishtar has now completed her cancer treatment and her prognosis is good. But she remembers that when she heard the diagnosis she felt very alone, and then realized that she had to be the one to tell the people she loved. She attributes getting through it in a large part to her mother, her dog, and her sense of humor ... she made us all laugh with her description of how she managed to tuck away her shunt in her bra ... and how she was chased out of the nuclear medicine corridor because "our giggling was disrupting things".

During the discussion that followed, The Sojourner made the interesting point that different health support groups seem to prefer different approaches. Some, like ours, benefit from having a regular meeting schedule. Others (and she gave the example of stroke survivors) tend not to want regular support, as that can remind them of what they can't control, but do want a crisis line where they can get immediate attention. As Gentle Heron added: "Some of us need routine. Some of us need help when we need it."

Ish is now a team captain for Relay For Life of Second Life. I'll let her have the last word: "Support comes in many ways but one I missed out on was the American Cancer Society and Relay For Life. In so many ways I wish I'd had my wits about me and contacted them. It would have done me so much good to meet others with cancer, and especially survivors. I'm so delighted to be involved now and help others battling cancer."

Brrrr...

Sometimes Real Life outdoes Second Life ...

Cancer Research UK, the UK charity and support organization equivalent to the American Cancer Society, launched its Race For Life recently with a naked training session. Twenty-eight women bared nearly_but_not_quite_all to run in Regents Park, London.

I really am not kidding. To view the plain truth, covered only with strategically situated body paint, see:

http://www.raceforlife.org/allaboutus/officiallaunch2008/

Nudity is a great leveller. And this event must have been quite an attention-catcher, not least because it is really VERY cold in Regents Park in the winter (I should know, I used to live quite near there).

It's been rumored that CRUK may soon establish an official presence in SL, alongside the American Cancer Society and the Association for International Cancer Research. Well, CRUK certainly knows how to make an impact, so we'd all better watch out when they come on in ...

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.

We all had a Ball last night...

November is officially Caregivers Month, and when Marissa Goodliffe, who is Chair of SL's Cancer Caregivers Group, realised that there wasn't going to be time to recognize caregivers properly that month, she decided instead to organize a party on December 15 to honor the caregivers in our midst and to invite the caregivers, survivors, and Relay For Life groups affiliated with the American Cancer Society in Second Life. She was helped by Nevar "Santa" Lobo, Pips Fetid, and Synergy Devonshire who put together charming Holiday packages for everyone.

The Holiday Party was one of the most memorable and successful parties I have ever been to in Second Life. I really had a ball. The setting was beautiful - the castle was designed and built by Pips Fetid; the music was great, a medley of seasonal songs put together by DJ Bcreative Wilde; and the conversation and the company was wonderful. And what made it worthwhile was that so many people from the caregivers, survivors and RFL groups turned out, both to enjoy themselves and to celebrate the caregivers whose caring makes such a difference to the lives of those of us touched by cancer. I saw many old friends and made new ones. Thank you so very, very much, Marissa, Nevar, Pips, BCreative (and a Happy Bday!) and Synergy.

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!"

The Road to Well Being

On Saturday, December 1, there was a Well Being Conference in Second Life, organized by Tina Marlin and Sophianne Rhode.The conference focused on Real Life personal well being, covering all aspects of well being in three major sessions: Body, Mind and Soul. The aim of the organizers was to bring together people from all paths of life to share and discuss their experience and knowledge. Individual speakers talked about their strategy to master life with all its specific problems, what personal well being means to them, and how they reach (or are hoping to reach) this goal.

I spoke in the session on Body - physical health & awareness - on the topic of "Coping with Cancer - a Survivor's Perspective". It was the first time I have talked publicly about my life as a thyroid cancer patient and about how being diagnosed with a recurrence 25 years ago took me on a journey of learning to be more assertive and to participate more actively in my own treatment decisions and care. And then Marissa Goodliffe, Chair of the Caregivers group, spoke about "Coping with Cancer - a Caregiver's Perspective".

We also exhibited there to raise awareness for the Survivor and Caregiver groups and for the American Cancer Society's activities in Second Life.

The conference was very well organised and attended, and it was an excellent networking opportunity. Well done Tina and Sophianne! I hope you will be encouraged by the turn-out and the positive response to put on more events like this.

Anyone got a stress ball?

Stress levels mounted all round when Sheeznit Naheed attempted to organize no less than 30 avi's in an interactive game of "Have you ever..." to break the ice and introduce the topic of Post Traumatic Stress Syndrome. Not everyone saw the point of the exercise, but it was a brave departure from standing in the auditorium and running through a set of Powerpoint slides. And yes, most of us DID get it, although Sheez must have been sweating bricks by the time he finished getting some order into us and explaining the rules to us umpteen times.



Then it was back to the auditorium. In real life a school psychologist in Columbine, Colorado (yes, that's right...) Sheez knows what he is talking about. And it IS a very serious subject. But, in another departure from convention, he avoided giving us a textbook definition ("you can all Google PTSD and learn a lot...") and concentrated instead on the relationship between stress and anxiety and illness. In his view and contrary to the findings in a recent study "there is TONS of evidence that avoiding negativity, being positive, avoiding stress, are all very effective in fighting cancer...". There were nods all round in the audience.



I can do no better than simply give you the chat log of Sheez's closing words:

Sheeznit Naheed: I live and work with folks everyday who are in the struggle with fear of dying
Sheeznit Naheed: or fear of living another day
Sheeznit Naheed: I know folks who have lived through hell
Sheeznit Naheed: some of whom the world will not let them forget
Sheeznit Naheed: and the strongest of them are fighters
Sheeznit Naheed: or artists
Sheeznit Naheed: or full of faith
Sheeznit Naheed: or they just ride a bike every day
Sheeznit Naheed: or they do awesome things for others in a virtual world
Sheeznit Naheed: whatever it is
Sheeznit Naheed: they LIVE STRONG
Sheeznit Naheed: and I encourage you all to do the same



And yes, there were a few Powerpoint slides. Synergy Devonshire who organized the talk is going to put them up in the Welcome Center so please go take a look. And she is compiling a transcript from the chat log - IM her if you want a copy.

The approach may have been unconventional but the message is likely to stick. And now I'm off to Google PTSD and see what more I can learn...

Understanding Post Traumatic Stress Disorder

Post Traumatic Stress Disorder doesn't only happen to combat veterans and rape survivors. As the name suggests, it can affect anyone who has a significant trauma - including, for example, a diagnosis of cancer.

Understanding can be half the battle. Come and learn more on Sunday, November 25 at 2 pm SLT when Sheeznit Naheed will be speaking on PTSD in the Auditorium, American Cancer Society island. As a Real Life psychologist, working for Columbine's school district, Sheez is uniquely qualified to talk on the subject.

LM American Cancer Society Office, American Cancer Society (82, 81, 23)

Putting the emphasis on early detection

Last week I had a sneak preview of the new Womens Health Clinic at the AMMC-Sprott Shaw college. AMMC - the Ann Myers Medical College - which was created by DoctorAnn Buchanan to test the possibilities of virtual training for Real Life medical and nursing students. I was shown round the womens' health section by Vera Zhaoying who in real life is a 4th year medical student in Holland and who is responsible for much of the build.

The main emphasis of this clinic will be on prevention and early detection. Vera showed me the four terminals in the reception area which in time will be linked to websites dealing with prevention, detection, and support topics. At the moment there are two examination rooms, one for breast and one for the female reproductive organs. The first room we went into is devoted to early detection of breast cancer and contains a mammography unit. (I "touched" the unit and was relieved to discover that it hasn't been completely scripted yet.) More equipment is going to be added, with the idea of expanding in the future to cover general womens health.

There's no doubt that visiting a womens' clinic can be a daunting experience for many of us in Real Life. So as well as being a tool for doctors and nurses in training, I can see the clinic being helpful in educating women about their bodies and the early signs of cancer, and getting familiarity with the various tests and instruments.

Dr Elspet Glasgow will be heading up the clinic.

American Cancer Society continues to innovate in Second Life

Was walking around on ACS island the other day and ran into Zeina Zehetbauer who turned out to be a reporter for SLNN. Zeina interviewed Randal Moss (R.C. Mars in SL) who is the ACS representative in SL, Synergy Devonshire and myself, about current and future developments, including the survivorship activities. See:

http://www.slnn.com/article/american-cancer-society-innovation/