The Leukemia & Lymphoma Society - Fighting Blood Cancers

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6 Posts tagged with the caregivers tag
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Tell Us Your Story!

Posted by millss May 9, 2008

First things first - we have a favor to ask of you! Consider sharing your story with us via our Tell Us Your Story contact form that we recently added to the website.

We have a lot of ways that we can keep in touch with our web visitors.

  • There is a great network of websites, including our main one, www.LLS.org.
  • There is this blog, The Leukemia & Lymphoma Society Blog.
  • We have regularly scheduled telephone education programs.
  • We also provide several e-newsletters that our visitors can subscribe to.

These are just a few ways that we can keep you informed online.

On top of the above communication channels, we recently decided that our online contacts need to read about the people who have been positively affected by The Leukemia & Lymphoma Society (LLS). Right now we have elements of this, but we decided to devote some of our emails with real stories of people who have been helped in some way by our work. These are people who are battling blood cancer, may be in remission, or caregivers taking care of someone with blood cancer. We haven’t sent any messages out yet, but if you are an opt-in contact* you should receive our first story soon.

What we’d really like is to hear from you so we can tell our contacts your story. Have you utilized any of our resources during or after diagnosis? Do you volunteer with us in any capacity? Do you participate in any of our events? If the answer is yes to any of these questions, please go to our Tell Us Your Story contact form and let us know your story.

If you don’t have a story you’d like to share, but you still want to contact us, I’d suggest using our main contact form so your question or comment can be routed to the appropriate staff person more quickly.

*An opt-in contact is someone who has agreed to be contacted via email by The Leukemia & Lymphoma Society. This type of agreement can take place while you’re signing up for an e-newsletter or by filling out one of our online contact forms.

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Spring finally arrived a couple of weeks ago. The weather is still a little chilly here in New York, but the temperatures are definitely trending upward. Before you know it the flowers and trees will start blooming all over again, and I’ll want to write blog posts from the shade of a tree instead!

Spring can be invigorating after a long, cold winter. But for couples who are dealing with the effects of cancer and its treatment, the arrival of spring may not feel the same. This may have been a season you've associated with spending more time with your partner--taking walks, holding hands and showing affection. It's natural to want to relate to your partner in intimate ways...to touch, hug and kiss, to give and receive love. But people with cancer sometimes feel removed from sexual and intimate experiences for any number of reasons.

Some patients or their partners may feel that

  • These are not life or death issues and don't deserve their attention.
  • Sex should be the last thing on one's mind.
  • They are being selfish for being concerned about sex.

Sexuality is not just about physical needs, but also about psychological, social, emotional and spiritual factors. It includes self image, body image, reproductive ability, emotional intimacy, sensual feelings and sexual functioning. Discussing sexuality-related concerns may be important to your quality of life in areas that are not limited to sexual functioning, such as, feeling comfortable with yourself and enjoying close communication with loved ones.

Learn more about how can you cope when your cancer has affected your sexual and intimate relationships by downloading our Sexuality and Intimacy fact sheet.

Also take some time to listen to our recent teleconference, Sexuality and Intimacy After Cancer, a telephone education event that featured Sage Bolte, MSW, LCSW, OSW-C.

Consider sharing your experiences here. Has cancer affected your relationship with your partner? How have you and your partner handled this?

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I’ve been spending a little time today reading the Patient Services Discussion Boards, specifically the Newly Diagnosed board. It’s heartbreaking to read some of these posts. A lot of these new cancer patients and their caregivers are scared, feel helpless, and alone. Participating in our online community allows them to find the immediate emotional support they need.

These people are also looking for resources – many of which The Leukemia & Lymphoma Society (LLS) provides.

In just got the dx dkvpv looks for questions to ask her doctor:

“…my Dr. said we would sit down and talk. I'm very scared and numb. What should I expect, what should I ask?”

The LLS website has a page called, What to Ask After Diagnosis. It has a variety of printable question guides which can be of help during different conversations a cancer patient may have while sitting down with their oncologist.

In NH folicular lymphoma Me2RN looks for peer support:

“At times I feel set apart from others and would like to just talk about it with people who feel like I do or have the same experience. I have a great support group around me but they do not have cancer.”

LLS offers First Connection, which is a peer-to-peer support program. You can sign up to receive a call from a trained volunteer who has been through it, just like you. Both patients and caregivers can utilize this helpful program.

In New dx of CML-scared to death!! LauraB523 wants to know how to cope:

“So, does anyone have any advice or coping skills to pass along? I have some good days but also some bad. Just a lot to deal with right now!!”

Along with many other free materials, LLS offers the Coping support booklet (.pdf) which can either be downloaded or received by mail. It’s geared towards people living with leukemia, lymphoma and myeloma.

There are many other online resources available to people who have been newly diagnosed with one of the blood cancers. It’s not easy to find out that you or a loved one has cancer, but it can be easy to find the help and support you need on our website. Can’t find what you’re looking for? Give us a call or send us an email.

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We sponsor a lot of very interesting teleconferences, but they usually take place on a weekday in the middle of a day. This means that many people who are at work or busy doing something else are not able to listen to these live events. Luckily we have our telephone education programs archived on our website, and additionally we have several podcast feeds.

Up until just a few days ago we had three podcast feeds:


We just added seven more podcast feeds to make it easier for people to listen to the teleconferences they are interested in. Here’s a list of our new feeds:


Okay – so a lot of people may not know what RSS or podcasts are. I’ll try to explain.

Really Simple Syndication (RSS) has been around for quite a while (since about 1999), but it hasn’t really taken off until the last few years. Personally, I didn’t really start to utilize it myself until a couple of years ago, but now I am taking advantage of it on almost a daily basis.

RSS allows you to read content from all of your favorite websites in one place. Do you find that you don’t have time to visit all of those websites on a daily basis, but you still want to read their content? The solution is to create an account with an aggregation service like Google Reader or Newsgator, then add your favorite website’s feed to the aggregator. At this point those websites syndicate their information to you.

A podcast feed acts the same way, except instead of text-based content, websites (like ours) can syndicate their digital media files (like teleconferences) to you. With our podcast feeds you’ll always stay up to date when there is a new teleconference, making it so you have less of a chance to miss that important and informative information.

Learn more about our new feeds and RSS on our LLS News Feeds and Podcasts page.

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Leukemia in the Blogosphere*

Posted by millss Feb 12, 2008

Take a few minutes and go to a website like Technorati. Type in the search bar “leukemia” and see how many blog posts come up. I just did a search and as of right now it says that 677 posts are tagged “leukemia” and there are 152 blogs about leukemia. There are also quite a few videos and photos.

It’s inspiring to read some of these blogs. It’s clear that writing about their experiences with cancer, whether they are a patient, caregiver or family member, is therapeutic and relieving. Not only are they helping themselves, the people who run across their blogs are finding hope and encouragement.

Take a look at How's Dave Doing?, a blog written by Anna about her husband Dave’s battle with leukemia. It’s both touching and informational. Read her recent post reviewing our very own Emerging Therapies for Blood Cancer Patients seminar held in San Francisco.

It was a strange feeling to sit in a huge ballroom, filled with hundreds of people, and think, "Most of these people have Leukemia or Lymphoma." You'd see a couple, and try to guess which one was the patient and which one was the caregiver, and it wasn't possible.
Another blog, The Plog, written by PJ, is about a woman’s experience as a leukemia patient and cord blood transplant recipient. She writes both about normal day to day experiences and surviving cancer. In January she celebrated her birthday with a morning run:
What made me go out for a run this morning at 7:30 when the temperature flirted with thirty? The flip answer is: because I could. The real reason I braved black ice was that today marks the completion of 54 years of living. There were moments over the past 22 months when I didn't think I'd survive to celebrate this day, let alone run two miles. My mother died of cancer when she was 53, and ever since I received my leukemia diagnosis at 52, it's been impossible for me not to dwell on her untimely death. Those were footsteps I did not want to follow.
Do you have any favorite personal cancer blogs that you follow? Do you write one?

*From Wikipedia.org: Blogosphere is a collective term encompassing all blogs and their interconnections. It is the perception that blogs exist together as a connected community (or as a collection of connected communities) or as a social network.

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Today we are launching The Leukemia & Lymphoma Society’s first blog! There are a few things that we hope to accomplish with this new communication tool, but most of all we want to make this an informative and interesting destination for you: patients, caregivers, and anyone else affected by any of the blood cancers.

A few topics we plan to cover are advocacy, teleconferences, news articles, and more…

We’d love to get ideas from you, though. What do YOU want us to write about? (To comment you must first register if you haven’t already – registration is easy and free!)

To make sure you are the first to know when we have posted a new blog entry subscribe to our RSS feed. Or you can bookmark this webpage in your browser and visit us often.

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