"Do You Belong To A Local Lost Chord Club?"
If so, please tell us about it such as its activities, history, and influence it may have had on you and others.
Mary Jane Renner - Indianapolis, IN - Hoosier Anamilo Club
The Power of Support Groups
As a social worker I have always believed in the value of support groups, but I watched that power unfold today. At a local laryngectomee support group the husband of a laryngectomee came to me and explained that his brave wife was losing her third battle with cancer. She had made the decision to discontinue treatment that would reduce her quality of life without lengthening it. He said that she wanted the group members to know, and I asked if he wanted me to tell them. He said “yes” that he just couldn’t do it himself. I told the group that this member after a valiant fight against cancer had made the decision to stop treatment and was currently in hospice care. I said that I knew that the group would share their support and keep her (and the family) in their thoughts and prayers.
What happened during the rest of that meeting demonstrated the power of support groups. Every attendee (some whom have known Nancy for years and some who have just met her) verbally and physically surrounded the laryngectomee and family with love support and prayers. I really felt privileged to watch such compassion and support unfold before my eyes.
We have seen a demise in attendance at many laryngectomee support groups in recent years, which I think is a loss to the laryngectomee community ( both patients and caregivers). What I experienced today tells me that we need to continue to keep these groups viable and available to laryngectomees and their caregivers.
Mary Jane Renner, MSW
Angelique M. Erickson - Lary 09/01/10 - Lost Chords of San Antonio,TX
I am Angelique, and yes I am a member of Lost Chords of San Antonio. Have been since soon after my recovery. The members are a great group. With laryngectomees and their spouses or life partners. Love how warm and welcoming everyone is, and has been from the start. And how natural each of us handles our different forms of speaking. Many times, if there's no guest speaker. I sit back and listen to the flow of conversation. Amused to hear the same vocal mix, as you would with any group of people in a room. The Christmas party is coming up. And I am looking forward to it. Because the members have become like old friends over the last two years. And I both look forward to seeing, and spending time with folks I feel normal with again. Namaste, y'all
Betsy Fein, Red Bluff, CA - 2012
I wish there was a lost chord club here in Red Bluff,CA, but the closest one I know of is over 100 miles away in Sacramento, and I no longer drive.
I have not even been able to find a local cancer support group. Both my radiation oncologist's office, and the local hospital when I called them just told me to look in the schedule of events in the local paper. (And this is an award winning local hospital for level of patient care and support) ---rolling eyes: LOL
As far as I know, there is only one other Lary in my area, and he is about 30 or so miles away, but surely there are other cancer patients since we have a whole cancer radiology office here.
Brenda Jackson, Riverside, CA
I am a member and the Secretary for NuVoices, in Riverside Ca. We will be having our Xmas party on the 8th of December and we had a summer ending picnic at the park. It's sort of hard to get our members out!! I'm looking for ideas/suggestions on getting the members more active and involved in doing more. I will be reading the speaking out question, and hope I find some new ideas to share with our club.
Elizabeth Finchem, CA
A couple that have been coming to one local club that I attend regularly sums up the reason why it is important to maintain a local support group for laryngectomees.
During last month's meeting the man's wife told two new laryngectomees and their family members that she and her husband have learned more from the club members than they have from all their medical professionals. As members for the past four years, she added, they still learn something new every month. Beyond finding out that her husband isn't the only laryngectomee in town, they have learned very practical stuff.
1. The club's loan closet helped with the decision of which EL works best for him.
2. What is the best way to take the hypo-thyroid supplement properly when the Rx vial doesn't have any directions?
3. Does everybody use a shower collar, or an HME?
4. Do all laryngectomees cover their stoma?
5. How much humidity is enough?
As you can see from this sampling of frequently asked questions the club is an important connection for our new laryngectomees.
Over the decades of attending local club meetings I have seen many very frightened men, women and their loved ones show up on the recommendation of their ENT or SLP to visit with us for an hour prior to the surgery. They have an opportunity to meet laryngectomees at every level of recuperation and rehabilitation; all speaking using different methods…electro larynx of all kinds, esophageal speech or TEP (beginning to advanced). I can tell you the relief on the faces and body language of the visitors when they say good bye is notable. What always seems to get their attention is seeing us laughing and enjoying the time we have together.
Len A Hynds - The Speechless Poet
My local support club is the Ashford Laryngectomee Club, County of Kent in South East England. We cover the area of the East Kent Hospital Trust which consists of 8 hospitals, 3 major ones, two smaller ones, and three others.
There is another support group based at the Medway Maritime Hospital, in the northwest of the county, which is in Gillingham, where the American Indian princess Pocohontas was buried in the parish church.
I met members of my group before my operation, under the 'Buddie' scheme, in fact three of them appeared, and over the nine years since, the whole group have become a second family. All our club meetings are held at the hospital,
and our chair is the Ward Manager, Nursing Sister Caroline Mackenzie. All the nurses and doctors on the ENT Ward are honorary members of our club, and take part in all our social activities. We have at least three trips to the continent, either France or Belgium each year, our coach going on the train beneath the 22 miles of the English Channel. We do that for speed. We are off to a Christmas market at Amiens in France in two weeks time.
We have quaint old village pub lunches, and our Christmas dinner is just a few weeks away, one evening. We have quiz nights, cream teas and lots of other happenings. On the serious side we all contribute to the club, with money raised by marathons and coffee mornings etc. People, like myself, donate cash by things we have done. One chap who before his operation could not even put up a shelf, now makes the most beautiful wooden chests. My own effort is the sale of short stories and poetry. But we all take an active interest in spreading the gospel about neck breathers and, to my knowledge, four of us are on different cancer related committees. At our club meetings we all discuss the various things that are afoot.
I personally am on the Kent & Medway Cancer Partnership Group, which is a county run thing, a patient representative on the East Kent Hospital Forum, and also on the high-powered government run scheme The Disease Oriented Group. I have also been to the police and fire brigade training schools to talk about resuscitation for neck breathers as the first responders.
I often talk at our club meetings of what WebWhispers Laryngectomees are worried about, or the Aussies down under. We all help out in spreading the gospel when our experts hold seminars.
In so many ways we are thankful that every part of our health service is absolutely free.
John Haedtler, New Mexico, USA - 2001
I wish I could say yes to this question. Unfortunately, there are NO clubs here in New Mexico. The closest thing we have are the great SLP's at UNMH. They set up and find speakers for us here about once a year. Carol and Paul have bent over backwards so many times for all of us Laryngectomees. I only wish I could do something for them to let them know how much all of their efforts have been appreciated by all of us.
At our last meeting we only had about 12 Laryngectomees but they brought their families. We had a nice visit with 2 of the sales representatives from a medical company then we all sat and talked with each other. We learn so much with a gathering like this. We all learn something new, not just the newcomers. I'm hoping to figure out a way to have more of these. But our state is large and we are spread out all over the state.
I can't express how much this does for the Laryngectomy community. Just knowing we are not alone going through all of this! That makes all the difference in the world!
Jim Lauder, San Antonio, TX
I am a member of the San Antonio Lost Chord Club and I try to attend when I can. I travel quite a bit and do miss meetings. My father was a past President of this club and I attend meetings and maintain their artificial larynx loan closet.
There are a couple of other clubs that I like to claim as being a member of. One is the Montgomery County Laryngectomy Club administered by Herb Simon. I try to attend their summer picnic annually and bring my tool kit there to do repairs. Herb and Sally Simon do an outstanding job.
I think it would be a great idea if individual clubs networked together when something is needed and/or someone needs help. This population is pretty small and we need to help each other out when we can. I think each club should have a designated contact person who can represent their club via email or snail mail. Just my thoughts...
Ellen Frohardt, Colorado Springs, CO - August 2006
After my laryngectomy in 2006, I was determined to start a "club" in Colorado Springs. Early in 2010, I was contacted by a local surgeon here who knew me and advised me that a social worker from a major hospital in Colorado Springs was starting a Head and Neck Cancer Support Group....and asked me to contact her if I was interested in participating. At first, I was very disappointed that someone else seemed to have "beat me to the punch" in starting a group. Not only that....this was for all kinds of head and neck cancers...not strictly a laryngectomee-support group. I was a bit hesitant as this is not what I had envisioned at all. Not only was it not "MY" club, but also incorporated a whole array of cancers and conditions that were not specific to my needs or those particular to laryngectomees.
After considerable (well, not too much!) thought, I met with the hospital social worker and decided to "dive" right in. What a great decision that was! We started the support group in July of 2010. We meet on the last Monday of every month and currently have 31 participants, with an average attendance of 12-16. It has been a wonderful education experience for me to learn about other cancers and treatments and everyone benefits and learns from everyone else. There are 6 laryngectomees in the group at this time (we rule!).
While stories, situations, treatments and medical specifics may differ, we all benefit by the sharing of our stories and educating each other. Everyone has the same fears of recurrence, the same hopes for the future, and the same need for optimism and humor. AND....I get to let someone else to the "heavy lifting"...you know, the room scheduling, the refreshment ordering, the worrying about logistics, etc. I send out the notices, do the "welcoming" and actively participate in topic selection and teaching, when appropriate.
This has been a wonderful way to actively participate in a support group and I encourage anyone who is interested to contact your local hospital social worker to see if you can participate in this way.
Pam OLeary - Aug 2011
I was member of the local club but it is 60 miles away. I have been sick and to Mass General since May through the end of July. Then I was home near Portsmouth NH and sick with infections and finally treated with twice daily radiation and weekly chemo treatments. So I haven't been to the local club and wish there was one closer to home. Im feeling rather isolated with my issues.
Louis Trammell, Chicago - 2009
I became a Lary 09/08/09 and did not meet another Lary until a year later when I visited my sister who lived in Dubuque Iowa, it was my meeting with them that made me decide to start my own group, Lary's Speakeasy, here in Chicago as there wasn't another group that I could attend in my area. My group is still very small so I find we can really focus on the new patients needs as our primary goal is early education in those first weeks and months, in fact right now we have a patient visiting us who will be having his surgery December 10th.. About 10 months ago, I met Aaron F, a fellow WW member and he drives so we also attend the Lutheran General and Loyola groups which are out in the suburbs and I find each group has something different to offer and each one of these groups have some super SLP's running them; thank you Shelly and Sarah and of course Janelle for my group. I'm hoping someday we can all work together to promote the welfare of every Lary and I would love to get the VI back to Chicago someday. Webwhispers was my savior but nothing beats face to face contact with another Lary so I suggest to all new patients to use both.
David Hughes - Desert Voices, Phoenix, AZ
We are a 40 member group called “Desert Voices” which meet monthly at Mayo Clinic in Phoenix. We are a relatively new group which started in 2009 and has gradually built a loyal attendance mainly due to the enthusiasm of the members and the staff at Mayo who continue to maintain a presence at our meetings and provide meaningful information to the group. Additionally, the group has achieved a very strong bonding and support culture which make our meetings enjoyable as well as informative.
We publish a quarterly newsletter “Desert Breeze”, which coincides with information published in the IAL Newsletter, and includes a variety of topics including important health items and feedback from our members. It is the type of meeting we enjoy even though many of our group travel over 100 miles to attend. I think this speaks to the quality of the meetings and the enjoyment we get from our membership in the group.