|Name Of Column
||Rockin’ and Rollin'
||News & Events
||Michelle Cororve Fingeret, Ph.D.
|| Body Image Changes
||The Bitter Fruit of Wisdom
|The Speechless Poet
||Len A Hynds
||What They Haven't Time For
||Prose & Poetry
|Bits, Bytes & No Butts!
||Windows 10, Apples Watches, and More
INDEX AND LINKS TO EACH ISSUE MAY BE FOUND AT: http://webwhispers.org/news/WotWIndex.asp
Rockin’ and Rollin'!
Thanks to you, our members, WebWhispers is alive and well! Our new memberships from the three weeks prior to last week is astounding. Between May 30 and June 19, we have welcomed 33 new members. The breakdown is as follows:
|USA – 22
|| Laryngectomee - 26
|Canada – 9
||Caregiver - 5
|Thailand – 1
||SLP - 1
|Venezuela - 1
Vendor – 1
WebWhispers membership will soon surpass 3,600 worldwide if it hasn’t already. That suggests something very important. We are doing a superb job at reaching and welcoming into our family precisely the people who need us! Our motto of Sharing Support Worldwide is being demonstrated live every day.
WebWhispers at the IAL
(OR, What Happens in Dallas, Stays in Dallas?)
Last week, at our 17 th annual WebWhispers Awards dinner, 28 vendors and people were recognized for their support of Webwhispers over the past year. Bruce Medical sponsored our wonderful pre-dinner reception as in each prior year and our friends at InHealth Technologies provided lovely centerpieces honoring the memory of Pat Wertz Sanders. We are grateful to Griffin Laboratories and Lauder Enterprises for sponsoring a number of people for our dinner.
Our honored guests, Scott and Ruthie Schram, Pat’s son and daughter- in- law, were with us for several days and Scott, as our guest speaker at the WW dinner, delivered a wonderful presentation about his mom, including much about her life that many of us may not have been aware of. Pat was a marvelous gift to WebWhispers and always will be.
Seriously friends, these are good times for WebWhispers. Last week, a number of us were in Dallas, TX for the 65 th Annual Meeting of the International Association of Laryngectomees (IAL) and the Voice Institute co-sponsored by the Texas Laryngectomee Association (TLA), celebrating its 25th anniversary.
At the IAL Banquet on Saturday night, Pat Sanders was named recipient of the Terri Hall Lifetime Achievement Award which was received on her behalf by Pat’s son, Scott Schram. For the first time that I am aware of, WebWhispers was actually a presenter at the Voice Institute, contributing to a record total of 28 approved CEU credits for the SLP students who were present for the event. Donna McGary, Jeff Vanden Hogen, Tom Olsavicky, and I were there to answer questions and to explain, in detail, how our website works. The audience heard about WotW and the Mail List, and was walked through how to use our website and how to become a member of WebWhispers.
We also made a conscious effort to promote membership in WebWhispers, the value of our website and our organization, and encourage publicizing what we have to offer to the caregivers, laryngectomees, SLPs and SLP students, and all those in medicine and academia who work in and for our community. Our table was constantly staffed by board members and others from among WebWhispers leadership. Thanks to Jeff Vanden Hogen (aka
Superman), David Kinkead, Tom Olsavicky and our newest board members Donna McGary and Jack Henslee for joining me in representing Webwhispers proudly. Our Buck Martin Scholarship Fund and the generosity of our friends at Inhealth Technologies enabled us to assist five people in being able to attend the events in Dallas last week.
We are rockin’ and rollin'!
Helping Patients Come to Terms with Body Image Changes
An important commonality shared by all patients who undergo treatment for head and neck cancer is that they often experience profound changes to their body image. Body image is a complex construct that extends well beyond how one views his or her physical appearance, and refers to perceptions, thoughts, feelings, and behaviors tied to the entire body and its functioning. Appearance alterations, sensory changes, and functional impairment stemming from cancer and its treatment can all have significant adverse effects upon a patient’s body image. Furthermore, across numerous studies body image concerns in patients with head and neck cancer have been associated with higher levels of anxiety and depression, worse quality of life, and sexual functioning difficulties.
Patients with speech and swallowing impairment are at particular risk for having difficulty coming to terms with body image changes from head and neck cancer particularly when these difficulties are long-lasting and/or permanent. Signs that a patient may be having particular challenges in coping with body image changes include: 1) seeming preoccupation with thoughts about appearance or speech/swallowing changes, 2) high levels of social avoidance because of changes to appearance, speech, or eating, 3) high levels of distress surrounding these changes, and 4) constant seeking of reassurance about appearance or speech/swallowing abilities. Because body image concerns are widespread among patients with head and neck cancer and associated with significant adverse psychosocial outcomes, it is important for patients struggling with body image changes to be offered psychosocial treatment and support.
The Body Image Research and Therapy Program was developed at MD Anderson Cancer Center to enhance the care of patients struggling with changes to appearance and bodily functioning from cancer and its treatment. As far as we know this is the only program of its kind in the U.S. with a specialized focus on addressing body image issues of cancer patients through a combination of clinical activities, multidisciplinary research, and professional education/training. We offer individual, couples, and group counseling delivered by psychologists. These specialists meet with patients prior to surgeries to discuss difficult treatment decisions they are facing that will affect their body and to prepare them for anticipated changes. Counseling sessions often include discussions about how patients can communicate more openly and clearly with their healthcare team about body image concerns. Immediately following surgery, we work with patients as they adjust to the initial shock of disfigurement or functional loss. Through active treatment and into survivorship, therapists work with patients to help them come to terms with their body changes and return to living their lives more fully. Among our most successful group programs to date has been sponsoring a support group through the National Foundation of Swallowing Disorders for patients with dysphagia. This group meets once per month and is co-led by a psychologist and speech pathologist.
Body image is a critical psychosocial issue for patients with head and neck cancer. Other
community resources available to help cancer patients struggling with body image issues can be found through the following sites: The American Cancer Society: www.cancer.org, Cancer Support Community: http://www.cancersupportcommunity.org, and Changing Faces:patient.info/support/changing-faces.
Michelle Cororve Fingeret, Ph.D.
The University of Texas MD Anderson Cancer Center, Houston, TX
War is Hell and no matter how many times it has been romanticized in film or print the real warriors who manage to come back all say the same thing – it is an experience like no other and bonds are formed during combat that no civilian will ever understand.
Cancer is a formidable enemy. And those of us who go into combat against it are changed forever in ways only “one of us” understands. I thought of this often during the last week as I attended the IAL annual meeting in Dallas. Military folk get together and self-identify by branch, year and unit. WWII, Korea, Viet-Nam, Middle East; this battle, that place, these guys. They recount their stories in language only the initiated understand. They solidify a bond they wish they had never needed to know. As do we. We just do so by type of cancer surgery/procedure and outcome.
Time and time again as we talked, whether formally in programs or informally belly up to the bar or breakfast buffet, we told our stories, compared our scars, shared our knowledge about moving forward as a “civilian” with this “new normal” and celebrated the fact that we were not alone- that someone did, indeed, understand exactly what we went through and are STILL going through. We were among fellow warriors. We were finally back, we were home and we were going to be okay. And if we weren’t okay just yet, there was hope. There were folks who got it and the effin mucus and voice crap and new holes and everything could be managed somehow and we could see the light at the end of this very long dark tunnel.
The old warriors, myself now among them, boasted about our scars and understood why being allowed to eat a meal without having to talk nor explain oneself is such a pleasure. Companionable silence is a lovely gift. There were a lot of unusual sounding voices (to the “civilian”) at the Dallas Omni Hotel this past week but, frankly, it was music to my ears.
I know some folks can’t get to an IAL meeting - it can be out of reach financially. However, WW had scholarships and grants that went unused this year because no-one applied. If finances are the reason you think you can’t join us next year, please let us know. WW can help.
I went to my first IAL meeting in Boston in 2005 and also attended the Voice Institute at that time. It was a truly memorable experience. I have attended 7 more such meetings since then and plan to go to Virginia next year. I encourage you to watch for details and try to go. Think of the IAL annual meeting as a very cool summer camp for larys.
And since humor is a particularly effective weapon against our enemy I leave you with this. I made a dear lary friend on a WW cruise back in 2003 and we have tried to get together every year or so since then. It is not always easy since we live, literally, worlds apart. She and I both love musical theater so in Dallas we went to see Bullets Over Broadway – who doesn’t love tap-dancing hitmen? Now the theater was a ways out of town and we braved public transit to get there but having learned that the stop that we had to come back to at 11PM was noted for a particular kind of business, shall we say, we opted for a taxi back to the hotel. Linda and I were talking to the amiable taxi driver and he says, “I hope you aren’t offended but what happened to you guys? You sound kind of like aliens.” I use a Servox, Linda has a TEP. Of course that meant a whole big conversation but it was fine and kinda funny.
So next morning I go down to the front desk to ask the concierge a question and run into Dorothy and Tom Lennox from Luminard. We are chatting and Dorothy asks, ‘You’re from New England, right?” And I reply, “Yes, Maine.” The concierge, a terrific local guy who had been so helpful to me earlier, bursts out, “I knew you had an accent, I just couldn’t figure out where it was from!” HAH - from being an alien to having an accent….priceless!
The next day as more and more of “us” began to check in I went up to TJ at the desk and said, “Better call the Men In Black, this place is crawling with aliens”. He didn’t miss a beat and said not to worry, like all good concierges, he had Will Smith on speed dial. We all need to share our stories, the good, the bad and the ugly. If you can’t go to a physical meeting with other lary veterans, tell us here. We get it.
Aliens …. Are you kidding me?
Do you or did you have any eating problems as a result of your treatment?
Name. Elias Musleh
Date of operation 30.11.2011
Now I don't face any eating problems. Eating everything and there is no difficulty in swallow the food.
Thx a lot with best wishes and regards.
I had a total laryngectomy on December 10th 2015 as a result of thyroid cancer. I have a TEP
which enables me speak successfully. I live in CapeTown South Africa.
I can eat anything. I have to chew more and often have to drink water to help food go down.
Hope this is what you are looking for.
Oh I had iodine radiation treatment. I have had subsequent surgery to remove more tumours in my neck.
Minimal eating problems
Salina, KS 2011
I have not had a steak in the 6 years since my radiation and then surgery. I have trouble with dry foods
getting stuck in my throat. So I eat a lot of pastas and other softer foods. Which is just fine. I put on 50 pounds since getting out of the hospital. And I love spicy food so always warm things up a bit with the peppers I grow. Some chicken is perfect other types get stuck. Fish and shrimp are always on the menu too. Just miss the steaks a lot.
lary since 3/2015
Since surgery, my jaw has changed shape some. I have some trouble with stringy foods. I still take too large of an amount of food each time. I can eat about anything, but my taste is not much. Take care out there.
I had my surgery August 28, 2015 at Mayo Clinic Az. I continue to
have swallowing issues, but happen to love soups and I drink smoothies. I drink Ensure, recently switched to Ensure Enlive with lots of ice cream. The main issue for me is trying to maintain a healthy weight.
Class of 11/2012
Hi all. I am one of the lucky ones! I had my total laryngectomy and the chemo and rads about month and
a half later. 10 days after surgery my IV feed came out. I was eating pizza the next day. (Against doc orders). Small bites. Had no probs until radiation. I just lost my appetite about the 12th out of 33 treatments. Made myself eat fruit, cereal and toast every morn but did not want food. I was able to swallow though. Lucky. Approx 2 weeks after rads I was back to normal. Eating almost everything.
Gained back the 60 lbs I had lost and then some. Overweight now by about 70 lbs! Yikes but what the h.
Let's blame it on the hypothyroid. Lol.
Robert A Evans
Complete Surgery June 8, 1999.
I have no problem eating anything except when I bend over too soon jt comes back up thru mouth and
I eat a lot of blended soup. I have learned to go to restaurants that will do that for me. I also ask them
to give me crackers which I can chew up & swallow. I am at a pizza place right now & they could abominate me. Lesson learned be assertive!
Ed K from
Class of 2014.
The only problem I have after years is with some potato dishes and certain breads. Everything else is going fine right now. Stay well everyone.
I sure did and still do have problems 10 months post op.
At first the swallow was so difficult and all food had to be mush but that has gradually gotten better but
I still need to eat very slowly (everyone else finishes and I’m just half way through) this causes problems insofar as I then feel the need to finish eating even though I am still hungry. Conversation is impossible as the conversation has moved on before I can swallow and get the food to go down before I can have my say so most of the time I just shut up, eat or speak is the choice. Smell almost non-existent as is taste unless it is very spicy.
Drinking while eating to help it go down is ok but often if I just drink without eating it causes me to cough, not sure why, leaky valve maybe. Perhaps I should get it changed more often but the process of changing the valve is so uncomfortable, I tend to put it off.
Altogether it can be difficult but when I see those poor souls that are peg fed I do thank my lucky stars.
Hope this helps your study.
Yes I have eating problems for I can't eat much. Yet when I do try to eat much of it goes up instead of
down unless I take mouse bites and chew it for a long time. I have had my throat dilate twice now and botox injections for speech so they say. I am also have TEP problems for this is 5th one since surgery! I even get water that if I do not think about swallowing it and take my time, it goes up and out my nose!
Class of 2013
I have not have a lot of eating problems. I think all of us have had the need to change our style of eating. Being smaller bites, less spicy, or just changing our cooking style. My big change is smaller bites. That is a challenge for me since I really enjoy food. I have found the need to take my time and enjoy the food. So even with no major problems, my surgery has made me take the time to enjoy my meals.
Next month’s question is:
“Have you ever had an unusual or funny experience directly related to being a laryngectomee?”
Could be from a friend, stranger, family member, or even a scary comment from a medical professional.
Thank you for your submissions. Edits are used for length, clarity and to keep comments on subject of the month.
Staff of Speaking Out
The Bitter Fruit of Wisdom – no wonder it’s hard to swallow!
At my first post-surgery Christmas, my cousin blended some of the dinner for myself and her 6-month old grandson. I remember looking with amazement at him getting through his full dinner while I was trying to swallow my first teaspoonful! Then I noticed his mum putting a forkful of potatoes in her mouth and then some veg and then some turkey – in and in it went with hardly a pause to chew and swallow! It amazed me that they could manage this feat of physiology with hardly a thought. It’s now almost three years since my surgery and my swallow has improved enormously since those days. I had written the piece below for WebWhispers, but never got round to sending it as I couldn’t think of an ending that felt authentic. But in the light of the Speaking Out question this month, I think it’s worth recording the challenge we go through in attempting to do what once was so automatically simple we never thought about it. So, stepping back to spring 2014:
Breakfast again! I take a spoonful of cereal, chew it round as best I can with stiff jaws and a tongue that’s semi-paralysed, carrying the bowl over to the table. I switch on the radio wondering what’s going on in the world. Trouble in Eastern Ukraine, Geneva peace agreement – I feel myself swallowing – fantastic! Eagerly, I try another, and walk back to the kitchen, chewing. Pro-Russian forces attacked ... I put a spoon of de-caff in a cup, dissolve in milk and heat. Second mouthful of cereal gone down already. Yippee! I can swallow - I’m a success! Back out to the table for another spoon, chew it around, hope my luck will last. A car crash in Leitrim kills mother and 4-year old child...
Half an hour later I’ve managed perhaps a quarter of the bowl of cereal and the same for the cup of coffee. Mood lower now. Feeling tired, like I’ve been pushing a truck up-hill. Maybe I’m not such a great success after all. I switch off the radio, no longer interested in the outside world. Tightness in throat where my adam’s apple used to be. At last another swallow. I hardly notice any satisfaction, I’m so obsessed with the three-quarters bowl yet to go. Quick, another spoonful, maybe this one will go down easy? Chewing, chewing ... waiting, wondering, then, yes, the moment when it ventures back towards throat ... expectancy ... will a swallow come? Bewilderment as a flood of warmer secretions spring up from a tight band in my throat. My mouth fills instead of emptying. Cheeks bulging, lips pursed, doing my best not to dribble, I walk around the room perplexed. Every time I think about swallowing, more secretions squirt up from the throat. What’s going on? Who’s in charge of this body anyhow? A dark wave of anger clenches my jaws, tightens my throat some more. Nothing to do but wait till it all passes.
Anger dies away and I feel myself hesitating, wondering when the flood will abate. Ah, at last, pressure on cheeks easing. Must be trickling down. Relief. My eyes close as I concentrate, trying to find the moment when I could swallow. A gulping swallow of sorts, not very effective. Frustration now, a feeling of powerlessness. What used to be so easy, automatic, not worth a thought, now has me straddled here, in no-mans- land, waiting to swallow. Another gulp, but fluid rebounds into mouth immediately. Tears prick at my eyes, my lip trembles. Pleasant tickly sensations around the gap at the back of the mouth, where my tongue can no longer reach. I feel myself tightening around those sensations, wanting to get my tongue into the gap, to close it off, to push the food down with the satisfaction of knowing I am in charge of my body. A mixed bag of sadness, anger, and despair flow through me as I contemplate that frustrating gap, seeing how my body follows laws that are not of my making and not to my liking.
Focusing on the emotions draws me inward towards their deeper sources. In formal meditation, I would let these emotions flow, watching their expression as tightness in the body, thoughts in the mind. Often the whole drama pulls me to the edge of my comfort zone, till my heart is willing to embrace the truth of ‘I cannot’ or ‘I don’t know’ or ‘I don’t want’. I’m strongly drawn towards this painful exploration, knowing the benefits of each little loosening of the chains that bind my heart to ‘I want’, ‘I know’, ‘I can’.
But for now, if I’m to have any hope of finishing breakfast, I have to forgo the draw. In formal meditation, we concentrate on some simple focus to help quiet the mind. But now I’m on a mission to distract myself! Away with the quietness that lets buried emotions surface to be felt and acknowledged.
Instead how can I suppress them? How can I lift my mood to help me though the long hesitations, the flooding, the expectations and disappointments? Radio? No – just bad news. I turn on the computer.
Internet. Gmail. Ah, email from WebWhispers!
Breakfast can take a couple of hours, but I try to see this as a learning process. What is life teaching me here? How can I minimise whatever misery I’m experiencing? Sometimes, when we acknowledge an emotion mindfully, it simply disappears. It feels like magic! But it’s taking me a long time to make peace with this ‘new normal’. After all, the need to swallow comes from deep within. It’s a matter of life and death. So I have to be prepared to be patient with the sense of failure, bewilderment, anger etc when I can’t feed myself. I remind myself I’m learning about the deep truths of mortality. This is a worthy lesson. In fact, is there anyone in the world getting such a nourishing breakfast?
That was my Spring 2014 piece. But I felt the ending was a bit glib. And to be honest, the ending below also sounds glib as I re-read it. But it’s the best I can do. And it’s what keeps me going. Idealistic thoughts somehow hold my bitterness in check. Being human is such a challenge - hating what we know to be true, and what we need to accept. It’s the bitter fruit of wisdom – no wonder we find swallowing difficult! In that sense all of the losses we Larys experience are a gift – we’re getting a long lesson in letting go of the ease and beauty and joy of a healthy life. And to the extent that we can find meaning and goodness in this new, unwanted phase of life, we will find the same in and beyond our last breath.
WHAT THEY HAVEN’T TIME FOR
I have been writing poetry and stories since I became a laryngectomee, now some 12 years ago. Before that I considered myself a smoking, drinking, plain clothed, hard-bitten copper on the famous Flying Squad, (The Sweeney) at Scotland Yard, when criminals of any substance would make the sign of the cross and peer fearfully over their shoulders at the mere mention of the name. This was all in my younger days, but even before that, as a Military policeman in Egypt and Sudan. To have even mentioned writing poetry in those days would have been laughable, but how my life changed when I lost my voice. I experienced all the fears that we all suffer when told for the first time that I had cancer, with the certain knowledge that death would follow fairly quickly. I saw the shock and sadness amongst family and friends and the embarrassed silence of the people who knew.
Of course I survived, and for the first few months could make no sound and my only means of communication was by writing. But I found difficulty in that, as by the time I had finished writing, the conversation was then about something else, so I went back to school to try and learn speed writing.
In all my medical sagas I learnt many things about doctors and surgeons, and to a lesser extent the nurses, that they are so busy using their skills in saving lives that very few of them have the time to consider the emotional aspect of a person with cancer fearing that they will die. So when I went on to University and eventually started speaking again with my TEP, I realised that many cancer survivors still had this gap in their survival experience, and to be signed off after five years by the consulting surgeon can be disconcerting.
In my discussions with doctors over the years, they regard the heart purely as a pump and not as an emotional thing, although for many thousands of years mankind has always regarded as the home of emotion, and love. They could not explain to me why a young man’s heart will miss a beat when looking at his lady love, or the strange things that happen to the heart when undergoing any emotional joy or stress. I am sensible enough to realise that the brain controls most things, but to my poetic mind the heart is still terribly important, and still affects us in the strangest way at times. So as my poetry progressed I decided that this would be my method of expression and I had a world full of laryngectomees to write for. I try to give our colleagues confidence in themselves and to convince them that life is really worth living. We all owe surgeons our lives, as survivors. I am more than content to bring a smile to your face afterwards……………..Len.
A LIFETIME OF SERVICE
To spend a life helping others,
takes a very special kind of man.
One who stands out in that band of brothers,
of the medical profession’s noble clan.
How many things, over so many years,
has he learnt, to acquire such skills.
How many thanks, whispered through tears,
has he heard, as the terror he stills.
He likes to think, that it's been just a job,
little realising the debt that we owe.
But ours are the lives, that death couldn't rob,
as the skills of that modest man show.
Windows 10 is One Year New?
Are you an Addict?
Time To Dump Your Paper Checks?
Windows 10 has entered into its second year of general usage and most of us have accepted it...like it or not it is here to stay. From the release date of Windows 10 there will never be another numbered version released....one less thing to worry about remembering. Microsoft will be updating and adding /deleting program features through their monthly update program. Many will be in the background as you read your emails and peruse your Facebook pages.
If you have an issue with the liberties you find Microsoft taking on adding things to your system you can actually do something to help reduce the garbage getting on your system. If you used a Windows express installation then you may not realize the permissions you have given to Microsoft. Sarah Purewal from CNET has some great advice to help us out of this...
The really big news for last April was the opening for pre-orders of the Apple Watch. Now that folks have had them for a bit they are starting to provide us with reviews and their insights to the long anticipated wrist wear. For the average Timex user the Apple Watch will certainly not be on his/her gotta have list...but for the Apple fan-boys and girls this is the final Big Thing to have. Judy Novotny with Dave's Computer Tips starts off by picking up where she left off last month with her thoughts on her first month with her Apple Sport watch...
Another review comes from Matthew Miller who loves his Apple watch even though he wore it wrong for a month...
Do you get reminders from your employer or your on line bank service or email service to change your password regularly? Have you ever wondered why? I have and honestly never figured out a good reason. I reasoned that if I have had a good password working for me with no problems then why should I mess with success and I finally found someone who agrees with me and my logic. Leo Notenboom of Ask Leo fame has expressed his thoughts quite in line with my own...do yourself a favor and read through his article.
And while your debating your password changes consider Bob Rankin's advice for falling into a hacker's hole...
It seems that identity theft is one of our greatest crimes against people that we have seen since the heyday of the Mafia. Many of the routine things we have thought of as safe have now turned against us. One of those is our paper checks! If you still use them you are in deep need of rethinking how you pay for goods and services. Paper checks provide "too much" information to be handed out unguarded...considering we can use a credit/debit card instead.
Read more from Bob Rankin to repair this hole in your security barriers....
As a worldwide community our lives have become more entwined than ever with the growing popularity of Social Media. Many have actually become addicted to the social sites that are available...free for the signing up and allowing the world access to your most private information. And that is exactly why it is free, sort of ...you have just contributed to the mega industry of advertising. I personally visit Facebook once or twice a week to see what my kids and grand-kids are up to...though I much prefer the old fashioned telephone. So take a moment to read over and evaluate your own media usage and see if you can relate on improving your use of time...
The WebWhispers Facebook Group is our meeting area along with the Webwhispers Forum. Many of our members are on Facebook, so we knew it was time to have a Facebook home. We invite all our members to join us in our Facebook Group.
If you are not a Facebook user then you might enjoy a visit to our Forum...hosted on Delphi the Forum, it is a Members only group which limits the access to only those of our hole in the neck group. You can read over the questions and insights of other Larys, as well as ask questions and get answers from our knowledgeable members.
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Editor - Donna McGary
Editor - Jack Henslee
The information offered via WebWhispers is not intended as a substitute for professional medical help or advice but is to be used only as an aid in understanding current medical knowledge. A physician should always be consulted for any health problem or medical condition. The statements, comments, and/or opinions expressed in the articles in Whispers on the Web are those of the authors only and are not to be construed as those of the WebWhispers management, its general membership, or this newsletter's editorial staff.
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