Ethnodrama about Lymphedema****

Nitocris · July 2012

Ladies,

Look at this. From Canada, an ethnodrama interpretated by 4 women about living with lymphedema. (project of the University of Saskatchewan)

http://www.youtube.com/watch?feature=player_embedded&v=HGZp9Vg8yzU#! - part I (15mn)

I like the beginning "we are in the dark.....then she lights up the candle..."

http://www.youtube.com/watch?v=DhGGMt003k8&feature=endscreen part II (16mn)

Great pedagogical resource for bringing awareness about what it's like to live with lymphedema - Also therapeutic to watch these women express the impact of LE on our lives. Usually, testimonies of LE patients are short and concentrate on certain specific problems. They don't give a full picture of the complexity and hardness of living with this disease.

I posted both links on my Facebook and sent them to all the therapists, nurses, doctors that I know. Also asked my husband to watch them.

Nitocris · July 2012

Hi again,

After the Ethnodrama, the Interviews sections are also very interesting:

http://www.youtube.com/watch?v=tA8zluIl_bc&feature=endscreen - Ethnodrama - Introduction by the researchers who developed the project (3mn)

http://www.youtube.com/watch?v=PPd_kBOSKf4&feature=channel&list=UL - Interviews section I (9:52mn) - 2 of the participants

http://www.youtube.com/watch?v=jg6hiGtr_w0&feature=relmfu - Interview section II (8:53mn) - 2 of the participants.

kira66715 · July 2012

Nitocris, I heard about it in Stowe, and got the links recently, haven't watched it, but Binney did and found it really depressing and a sense of hopelessness.

Kira

LtotheK · July 2012

I didn't realize lymphedema can make one feel like she has a permanent flu. There is so much insidious dark stuff around this disease I'm even still learning about.

I think it is a "downer", but early activism often is. Rage is the first part of the process. We are at a historical moment of women speaking up and out, things will get better with time. In the meantime, I'm so thrilled women are willing to help educate about the realities. There are far too many.

Ginger48 · July 2012

I watched it and also thought it was depressing but I could also relate to some of what they were saying. Having to always advocate for yourself and educate others including medical personnel can be exhausting. I do have that feeling right now that I just want all of this to go away so I can get on with my life!

Nitocris · July 2012

Kira,

When I watched it, I did not feel depressed and I thought it was great that women were speaking out. I could identify to their pains, sadness, grief, deep feeling of loss, etc, because it is a process I went through during the first months/years of my life with LE. The reality of LE is depressing. With LE, you don't get a death sentence, but you get a life sentence anyway.

The examples they are giving are real-life ones; the physical and emotional challenges, the grieving process, the lack of information, the dismissive attitude from medical staff, the adjustments we have to make to our lives, the constant learning, the "hyper vigilance", etc. These are the very same things one can find in many posts in the LE Forum.

I did not get a feeling of hopelessness because when you are hopeless, you just don't do anything. Maybe at the beginning, one feels hopeless, but then, one learns not only to cope but to take charge. This is what these women have done and by doing so, they are showing the way to others. They talk about the negative side of life with LE but also explains how to move from the negative. What tools one can develop to cope: swimming, yoga, deep breathing, EFT, making a collage to express their emotions, taking an active part in getting educated by attending conferences/lectures, the search for new options, etc... This is not hopeless; this is so full of life, energy and desire to move forward.

Putting up a face of "happy-to-be-alive" cancer survivor is not enough, we need to get strong from within and take charge. For some of these women, being part of such a project empowered them to move in that direction.

Yes, the mood of these two videos is not a happy one. It just reflects how deeply LE affects our lives. But, as one lady said this has been an experience of loss but also of doors opening. many doors remain to be opened.

We are not alone in this journey. Somehow, there is a message of Hope.

Hopefully, I was not too lyrical. Writing in english about this was harder than I expected.

Good week-end to all

kira66715 · July 2012

Nitocris, You are wonderfully lyrical. I have no right to criticize without seeing it myself.

Why is the grrrrr thread so busy? Because LE is not nice.

Thanks for the beautiful, thoughtful reply.

This is kind of OT, but I just read a book "Calling Invisible Women", and it's a metaphor about middle aged women who become invisible by taking some popular prescription medications, for osteoporosis, depression and hormone replacement, and how they become invisible, and their families don't notice at first, and then they band together finally and demand action, but at first, they don't want to go out of the house and they all lose their jobs. Felt like a metaphor for LE.

I didn't think it was a great book, but the metaphor was good. Until they joined forces, and forced their families and the pharmaceutical company to take responsibility, they were isolated, depressed and powerless.

http://www.amazon.com/Calling-Invisible-Women-Jeanne-Ray/dp/0307395057

Kira

Binney4 · July 2012

Nitocris, I very much appreciate your lyricism Smile , and you're right that the ethnodrama can potentially draw attention to LE. I liked the white doctor's coat hanging there behind them and various women playing the role of their doctors. It was funny and the sarcasm well deserved!

What I didn't like AT ALL was the section where they're all "dumping" the things they love and walking away. I have lost a great deal to LE, but I refuse to walk away like that. I still struggle to fit in what I can of the things I've lost, and to make positive adjustments where I just can't make something work. I resent having it presented that way and dreading that some of our newbie Sisters of Swell will see that and find the losses overwhelming, or give up and not even try to take back their lives. I wanted to shout at them, "Wait a minute! Don't toss that away! C'mon, let's talk about how you can make that work!"

So, while I do want others (especially medical professionals) to know how their view of our condition differs from our lived reality, I'm not in favor of handing our lives over to such a defeatist attitude, not even to prove the point that we're not being respected or understood.

Still, cheers to any lymphers at all who are standing up for us -- and brava to the four women who worked so hard on this project! Together we can make a difference! Kiss

Hugs all around,
Binney

moogie · July 2012

All of this is so powerful. Living with any life-changing chronic condition (I have a fistful since childhood ) demands a way of coping that really tries our usual strategies. You want to " have Le" instead of it having you---at least that is what I tell myself and aim for in a very deliberate way. Accepting a certain level of " transient moments of depression" about it has helped me--because I felt like a failure when trying to deny the sadness/frustration that happens when LE wreaks a havoc on your day. One thing that has helped is getting very....okay I will say it SELFISH----and learning to accept and trust the reality that when I am being limited by LE---I DO WHAT I REALLY WANT TO DO. Not every day is a good day for me with LE, so when I CAN choose what I want to do, I definitely do it. Less "should do" more " wanna do". I agree with Binney that it is so important especially for newbies to know and for us to be reminded---that we are doing a great and couragous thing soldiering on with LE and banding together in this way for support.

You are all my heroes.

Anonymous · July 2012

I think it's actually good. Heck, it's OUT there. And it's not gussied up with a pretty ribbon, which is fine by me. I think one reason the ethnodrama seemed kind of depressing is because of the delivery, the scripted reading. But I was okay with that because they clearly weren't actors. Binney, I agree about the presentation of losses without mentioning the creative solutions we often develop to compensate and continue with favorite activities. I think it was presented that way to makes a point, that most of us do have to give up a lot of activities, even simple ones we once took for granted in our daily lives. The purpose of the ethnodrama, I believe, is to educate (family, friends, medical professionals) and to reach others who may have been living in darkness. As far as freaking out newbies, I would have been glad in some way to have known the reality or possible worst case scenario (because when you are in crisis mode you often do have to temporarily let go of those things) in order to manage my expectations. For me it was overwhelming to continue to recognize new "can'ts" without any warning. That's what I found so depressing. However, I do agree the interviews showed how the women had grown and were no longer purely in the hopeless stage and learned how to cope.

The interviews show the much stronger and optimistic view of these individuals, and I could relate to much of what they said. For example, Lynn comments about her realization that later in life there are still new skills and interests one can develop. I really identified with that. After a year of slowly recognizing all of the things I could no longer do and mourning each loss, I decided it was a big world and there are many new things I could explore and learn. This was a huge step for me and a major turning point in my view on life after BC and with LE. It gave me back my joy. I sometimes consider it a positive, because I would have gladly continued to do the same things I had enjoyed for much of my life without considering trying the activities I have since. In some ways I had become too comfortable and a little bit shallow. If anything, it has forced me to realize I was living in a limited way with a firm opinion about my abilities. I certainly didn't think I was creative. I have since learned that everyone is creative if they let go of expectations about making a "good" piece of art.

I saw all of us in those women, the ups and downs. And the movement from isolation when first diagnosed, to the actions so many of us have taken to reclaim our power. All the activism being done by many here, educating medical professionals and the newly diagnosed. Look at the sharing of info among us, how united we are! And look at all the personal strides in self care - wrapping, emergency kits for travel, exercise programs and strategies to become more fit and healthy as a way to get back in the swing of things, lessen our chances for flares and increase our overall quality of life.

Oh, and I loved the vacant doctor's lab coat!

Marple · July 2012

I have watched some..........DH would not. OMG, what does that tell me?

kira66715 · July 2012

Nitocris, I watched it, and did not find it depressing--yes, putting the things in the box is depressing, but add my tennis racket and kayak paddle to the box.

Mostly, I found myself furious with the Canadian Health Care System that allowed massage therapists and sleeves, but clearly never taught these women how to wrap or allowed CDT--their arms were large and they all said "it won't get better". It would, if they could get treatment.

When I was in Stowe, Anna Towers MD, head of the Canadian LE Framework Project spoke, and she said that women with breast cancer could get treatment, but not people with primary LE, and she was furious. Apparently, CDT is not the treatment in Saskatchewan, just a few massages and a sleeve.

I did love the vacant doctor's coat, and the inane things the health care professionals said, thought the collage was amazing--the photo of the two women with the shark, and the doctor with the ear cone....

And Moogie, I totally agree about the want to vs. have to/should do--LE has changed that for me, and it's a change for the better.

Overall, I thought it was realistic, but I just wanted to get in there and wrap their arms!

I haven't watched the interviews yet, but I think this is important viewing.

Nitocris, as always, you bring us help and resources, and I'm sorry I wrote a negative review without taking the time to watch it.

Kira

Anonymous · July 2012

I thought when they said massage they meant MLD or CDT? I think I assumed they originally thought it wouldn't get better but eventually found therapists. I will admit I am not good at judging size of arms, normal vs swollen, and was listening more than looking.

Nitocris · July 2012

Binney, Kira, Tina,

I totally agree with you about the box. It was depressing, but one thing I noticed is that even though they walked away, they did not put a lid on the box and close/seal it. It remained opened. I don't know if they did it on purpose but even if it was not intentional, one could see something positive there. Also agree with you, that for newbies, this may be felt as a defeatist approach. Without your remark, I would have overlooked that point.

It is true that creatives solutions are not too much emphasized, but if I understood well, the purpose of this project was to use ethnodrama to increase knowledge about the impact of arm morbidity among women with BCRL and how these theatrical performances could bring changes in the attitude and practices of survivors and health care providers as well as evaluate the qualitative impact of their involvement in this project for these women.

They called the ethnodrama "Living with lymphedema" not "coping with lymphedema". Maybe, there will be a follow-up to this performance entitled "successfully managing LE" and it would be great to see some of these women pick up some of the things from the boxes and re-integrate them into their lives.

Watching the interviews is also instructive, more optimistic and brought out the many positive consequences of their joint venture. It showed how empowering this experience had been for them. The sense of confidence and strength they gained from it.

Kira, no problem. That's what I love about this Board, the various points of view, the exchange of ideas. You pointed out something, the depressing aspect and the feeling of hopelessness that Binney expressed. So, I watched the videos another time and tried to have a different approach. This was good, because I saw things I did not see the first time. Love your reaction about wanting to get in there and wrap their arms!

By the way, thanks for the information about the Jeanne Ray's book. I ordered it from the Book Depository in the UK.

Tina, like you said, exploring new avenues was also salutary for me. I would not necessarily have explored some options had it not been for LE. I understood that sticking to the "I want the things back the way they were" was a dead-end road for me. Reading about other women's experiences and feelings on this Board not only provided me with many concrete tools, but also taught me that I could regain some control by taking an active part in managing LE.

cathy1968 · July 2012

Hi - I haven't yet watched the video, but in reading this thread I just had to reply and address some misconceptions:

I am born and raised Canadian and can attest that WE ARE ABSOLUTELY WRAPPING TO TREAT LYMPHEDEMA IN CANADA!!

I am sitting here in Mississauga (just west of Toronto) with my fingers, hand and arm wrapped identically to what I have seen on the "Step up and speak out" website. I am a member of the Lymphedema Association of Ontario which produces a quarterly publication with articles on wrapping, personal stories and photos (of wrapped limbs) of patients with both primary and secondary LE, pharmacies that supply LE bandages and lists certified LE therapists in Ontario by city, just to name a few features. Everyone I have spoken to here in the field of LE has referred to wrapping as the "gold standard of LE care" i.e. sleeves and gloves offer convenience, but wrapping is a must to acheive and maintain smaller size initially and to address flares or new LE issues that may arise subsequently.

I would imagine that somehow "wires got crossed" in terms of Anna Towers' message. There is actually no such thing as the Canadian Health Care System per se. Our healthcare is provincial, not federal/national. I can therefore only speak of what I know is going on in Ontario (though I do know that coverage is similar from province to province). Devices such as perscription eye glasses, insulin pumps and compression garments and many others, are not covered by Ontario health care. Also, no PT, LE or otherwise is covered by our government. Yet we are not a nation filled with some bumping into lamp posts or fainting into diabetic comas or suffering with swollen LE limbs. The gap is filled usually by employee benefit healthcare, private health insurance or other government assistive programs.

Could health care in Canada be improved? Absolutely. Ours is a very good, but not perfect health care system. That is probably what Anna Towers was trying to address. Also, like many other western nations there is a terrible lack of knowledge about LE treatment and early signs among the physicians and surgeons who treat cancer!

As I said I haven't seen the video and am not sure why the impression was made that we have to suffer with sleeves as our only option for LE management/treatment in Canada.

I have tried not to sound too defensive in this post (sorry if I do!!) but not to address this would be an injustice to all the hardworking and dedicated LE therapist, fitters, researchers, specialty pharmacists (who sell the short stretch bandages) and LE advocates here in Canada who make it a priority that LE patients here get the best, most up-to-date LE care, even if not all of it is covered by our government healthcare.

Okay, I'll step down from my soapbox now...and maybe try to have a look at that video!

kira66715 · July 2012

Cathy, thanks for the information. I'd be really interested to know what you think when you watch the video--not a single woman mentions wrapping, and all talk about getting a few "massages" from private insurance, and they all talk about how their arm size never goes down and they've all had cellulitis.

Look, health care here in the US has gaps the size of the Grand Canyon, and personally, I"m absolutely clueless about how the provincial coverage works in Canada. And I work in healthcare, so there's no excuse.

Personally, I think LE should be covered by government health care, as the risk of progression and cellulitis if untreated are significant. Anna Towers talked about how untreated patients have shorter life expectancies.

The reason breast cancer related LE is coverd somewhat in the US is due to a law mandating coverage for breast cancer and its complications, passed in 1998. Primary lymphedema has no such mandated coverage.

Thank you so much for informing us.

I really want to hear what you think about this ethnodrama.

Kiira

kira66715 · July 2012

The ethodrama has a web site, and they ask for feedback:

http://www.breastcancersurvivors-ethnodrama.ca/index.php

We are pleased to announce the launch of a youtube video of a theatrical
presentation concerning breast cancer survivorship.The video is a result
of our CIHR-funded Dissemination to Intervention project uses theatrical
performance (ethnodrama) to disseminate results on the psychosocial
effects of lymphedema, the condition that arise from breast cancer
surgery. The aim of the project is to change attitudes and practices of
survivors and providers regarding their self-education, screening and
referral patterns. The ethnodrama, developed by survivors and professional
scriptwriters, is now being performed in several Canadian locations for
audiences of breast cancer survivors and health care providers. Using
surveys and follow-up interviews with audience members, the project
explores the impact of the performance on the knowledge, attitudes and
practices of the audience members regarding lymphedema.

Visit the youtube channel where you can view the performance, interviews
with the participants and researchers:
http://www.youtube.com/channel/UCewEVF6CcTlEKYlLNcc8FWQ?feature=results_main
Follow us on Facebook:
http://www.facebook.com/BCSEthnodrama.
There is more information about the Dissemination to Intervention
project and the multi-disciplinary team leading the project on our
website:http://www.breastcancersurvivors-ethnodrama.ca/index.php. You can
also follow us on Twitter at @BCSEthnodrama.

cathy1968 · July 2012

Thanks for your response, Kira!

I'm not sure in my previous post that I conveyed my disgust that no LE treatment, either primary or secondary, is covered for Ontario residents by our government. As I mentioned, this gap for most people is at least partially covered by work benefits. DH and I are self-employed however, so for 10 MLD sessions with a wonderful LE therapist, I paid a total of $850.00 out of my own pocket!! At least I can claim it as a medical expense on my 2012 tax return...but I have to wait until then, plus I won't get all of it back...oh well. I am so happy that the situation in the US is better, at least for bc patients. And no need to appologize about not knowing about our healthcare (I myself am not sure exactly what is covered in my own neighbouring provinces, after all!) I just often hear Americans referring to Canada's national, all-inclusive coverage, and frankly, it's just not either of those things and so we don't deserve that credit!!

As for the ethnodrama, I'm not really into that kind of artform but I tried to watch it with a positive outlook anyway. I guess they did a decent job with what they set out to convey, that is doctors don't recognize LE and don't seem too interested in believing that it is something that needs treatment. I agree totally with that, (although my experience wasn't too bad in that respect). Also they acted out the foggines of dealing with bc and all of the associated treatment side effects, which makes it harder for the patient to recognize and seek LE treatment. The new norm is also difficult to accept at first and it's good that they say that.

However, my own experience has been much more positive, especially in the "new normal" aspect as my LE therapist and LE trainer were both very encouraging and positive that you can do all the physical activities you used to enjoy, you just have to build up to them very slowly with the affected limb etc, (don't worry, they have given me lots of guidlines, references and the proper supervision etc and that has made me feel worlds better about living with LE). It's a shame they didn't get to that and the wrapping...(my arm and hand have responded so well I can't help but be thrilled for the moment). I noticed a part II that I didn't get a chance to watch yet, maybe it's mentioned in that?

I suppose any form of LE exposure is good, and it certainly comes with a lot of concerns, so maybe casting it so negatively will get people to sit up and remember it?

This is all very interesting and gets me thinking about how variable people's LE experiences might be. I'm inspired to start some threads in the relevent forums!

cookiegal · July 2012

So I watched the first half....and it was nice to see them put it out there....but yeah it was a little depressing too...but still glad they did it.

I so related to putting the paddle in. I turned down a "bucket list" trip this weekend because I am now afraid to paddle. It was kind of hard core but still.

This sounds ridiculous...but I wished they could have been wearing something else.....besides the sleeves of course. Something about the tshirts depressed me.