Well, the first-ever Lympho Bob Virtual Zoom Chat and Lymphoma Discussion Group (also known as LBVZCLDG, pronounced "Libvezcledig") met earlier today. We spent an hour together in a video chat. It was a really nice, easy time, sharing a little bit about ourselves and comparing our experiences. I think we all agreed that we'd like to do it again sometime. Our first item next time: coming up with a better name than "Libvezcledig" (which I probably should have run past the others in the group anyway).
It really was nice to be able to put faces to the names of some folks I have seen in the comments, or have exchanged emails with. As I have said before, I have always valued community as a way make our lives as cancer patients just a little bit easier. And at a time when so many people are having to isolate themselves, finding a way to connect with others is important -- especially with others who have been through some of the same difficulties as you.
After we met, I went to the abstracts for the ASCO meeting (coming up in a few weeks). It's the first chance I've had to take a look at some the presentations coming up. I skipped the Follicular Lymphoma abstracts (for now), and went to the "Psychosocial and Communication Research" group. I was curious if there was any research this year on support groups, or peer-to-peer support, or just anything about patients helping other patients.
There really wasn't much of anything, unfortunately. About the closest I could find was a presentation called "With a little help from my friends: A multi-disciplinary approach to cancer survivorship." It wasn't what I was looking for, exactly, but it did present some interesting research. The Yale Cancer Center has a "multi-disciplinary adult survivorship clinic.
The clinic is run by an oncologist, and after treatment is over, patients meet for 30 minutes with 4 different specialists who help with their lomg-term survival. There is an advance practice practitioner
(like an Advanced Practical Nurse or Physicican's Assitant) to look at their medical needs; a social worker to help with emotional needs; a dietitian to help with nutrition; and a physical therapist to help with physical issues and encourage appropriate exercise. They meet again after 2 or 3 months to see how they are doing and make any changes necessary to help with their long-term medical, physical, and emotional needs.
They found that many patients who went through the program had a decrease in distress and in fatigue -- signs that their physical and emotional health was improved by the program.
I keep going back to that title -- "a little help from my friends" -- named for the Beatles song, of course.
Interestingly, when I did a quick YouTube search for a link to that song, an ad for St. Jude's Cancer Hospital came up. St. Jude's is a hospital for kids with cancer, and they receive enough donations that families don't have to pay any bills.
It's all connected, isn't it?
We don't get through this experience without the help of others -- our "friends." Sometimes those are health professionals. Sometimes it's strangers who might help with things like bills.
Other times, it's other patients, who share experiences and help us understand that others have been through the same thing, and that things will be OK.
Last week, someone posted a question to one of the online lymphoma groups that I'm a part of. I forget the exact question that the person had, but it was something along the lines of, "What's the longest any of you have gone without treatment after their first treatment?" A bunch of people gave their response -- 6 months, 2 years, 20 years. And then someone responded saying, basically, it's kind of a useless question. Everyone has different circumstances, different first treatments, different health issues, different variations of FL. The answers won't mean anything.
That's true, but it's not really the point, is it?
No one asks a question thinking someone is going to tell them exactly how long they will be in remission. They ask because they want to know the possibility. They want that little bit of hope that comes from hearing someone else's experience, even if it isn't exactly their own.
I felt that way today, listening to other patients' stories. All a little bit different. But everyone has turned out OK. That's the wonderful part of talking to other patients.It's about sharing their small victories and hoping you'll have the same. It's about that little spark of
I hope all of you find someone to share with -- a Facebook group or Web Magic group, or a support group that meets face-to-face at the oncologist or hospital you go to.
Or meeting in a virtual group like "Libvezcledig" (we really need to talk about a better name). One where you can get a little help from your friends.
Take care.
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4 comments:
Hola Bob, estoy tan triste al fallecer mi madre. Ella padecia una insuficiencia cardiaca y hace dos semanas su corazón se paro y con ella el mio. No puedo dejar de llorar, ella lo era todo para mi. Era mi descanso, era mi compañera de viaje, mi deshogo en mi enfermedad. Le encantaba que le leyera tus escritos , siempre tan interesantes y tus comentarios
llenos de optimismo y esperanza. Siempre recuerdo cuando por primera vez leí en una de tus publicaciones la cifra de 20 años de supervivencia media en tu blog, creaste tanto optimismo y fuerza en nosotras, a partir de ahí cambio nuestro horizonte y las energias se renovaron con nuevas expectativas. Ahora leeré con la misma esperanza de siempre pero con la tristeza de que se fue parte de mi vida con ella. A veces cualquier escrito que te motive puede ayudarte a trnsmitirte esperanza y a sanar más que muchos sanitarios que se mueven a tu lado. Gracias por todo. Un abrazo
Hi Bob, I am so sad when my mother passed away. She suffered from heart failure and two weeks ago her heart stopped and with it mine. I can't stop crying, she was everything to me. It was my rest, it was my traveling companion, my relief in my illness. He loved that I read his writings, always so interesting and your comments
full of optimism and hope. I always remember when for the first time I read in one of your publications the figure of 20 years of average survival on your blog, you created so much optimism and strength in us, from there our horizon changed and the energies were renewed with new expectations. Now I will read with the same hope as always but with the sadness that part of my life with her left. Sometimes any writing that motivates you can help you convey hope and heal more than many doctors that move next to you. Thanks for everything. A hug.
Marcela Canary islands
Reminder
Never treated asymptomatic stage 4 follicular lymphoma. From 2010, the inguinal ganglion appeared until 2012, it was not biopsied and the diagnosis was damaged. We keep going.
Marcela, I am so sorry to hear about your mom. I remember you speaking about her a lot, and how helpful she had been for you. I know how it feels to have that missing piece. I know my own mom is always with me, even after 6 years, and I know your mom will always be with you, too. Stay hopeful. You are in our thoughts.
Bob
It was a pleasure to be a part of the Zoom group. I know it wasn't an easy thing to arrange, but it's nice to be able to put a face on you and some of the other persons who share your blog. Hopefully this can be done again. In the meantime, take care and just know how much you are appreciated...
Jackie
Thanks, Jackie! I'd like to do it again, too. I'll work on a good time to meet.
Bob
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