Hello to all, and welcome to this installment of the Monday Night Cancer Club. When I originally signed up to cover the September entry, my intention was to provide a diary about prostate cancer, since September is National Prostate Cancer Awareness Month (along with November, which is men’s health awareness month, or Movember.) One of the best resources for prostate cancer patients, families and caregivers is the Prostate Cancer Foundation website. It is really very well done, with dozens of easy-to-follow, well organized links. I can’t recommend it enough. When I was first diagnosed, it really helped me navigate to answers to a lot of my questions.
As I was roaming the PCF website a few weeks ago for a topic for tonight’s diary, I ran across something interesting. The PCF has partnered with a website called MyBridge4Life.com that provides an online platform to manage your cancer journey. It is by no means specific to prostate cancer, it is meant to be used by patients, family and caregivers of every type of cancer. Some may take to it like a duck to water, some may not care for it at all. So what is My Bridge 4 Life? I’ll give you a brief tour and discuss some of the plusses and minuses below the MNCC information.
Monday Night Cancer Club is a monthly Daily Kos group for anyone who has cancer, has a loved one with cancer, or who has questions, issues, or information to share about cancer, including clinicians, researchers, or others who have a special interest and can help to educate our readers. We have many different members who fit all these categories, sometimes more than one at a time. Please share if you can, or just listen; there is plenty to learn just from reading our extensive catalogue of past diaries and postings. All are welcome to use this group as a resource. Volunteer diarists post the first Monday of each month between 7:30-8:30 PM ET on topics related to living with cancer, which is very broadly defined to cover physical, spiritual, emotional and cognitive aspects. While most diaries focus on a specific topic or area relevant to cancer, each diary is also an Open Thread for sharing concerns, announcements, and information. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.
Here are the commitments for monthly diaries as it stands right now — please volunteer! We would greatly appreciate your input!
October — Quellist
November — tapu dali
December — ZenTrainer
January — peregrine kate
February — Pandora
As most of you may know, Monday Night Cancer Club has moved to a monthly cadence. Because of this, it is important to reinforce the sharing and community aspects of our group. If you click on the group tag, you will notice that the move to a monthly post doesn’t mean that there are only posts on the first Monday of each month. Entries are still posted to MNCC whenever they are shared or relevant.
Some of you may be familiar with CaringBridge.com, which has become widely used by folks to communicate and share their journeys through cancer or other challenges. I know my sister-in-law and brother used CaringBridge when she was going through her cancer and treatment, and it was an invaluable site to them and to us, as it enabled us to stay informed, and they were not overly burdened with having to share all of the medical details over and over to all concerned...it was centralized. MyBridge4Life is a bit like that, but there are other aspects to the site as well.
MyBridge4Life was founded by Roger Holzberg, and here is his biography taken from site:
While his work with NCI is pretty cool, I will say his background with Disney and as a writer/director put me off a bit, and I’m not sure that’s fair.
As for the website: there are four main offerings or areas:
1. There is a section to create goals for each of four segments of the cancer journey: Diagnosis, treatment, healing, and wellbeing These areas are basically blank areas to be written in, to chronicle and record the journey, and yes to set goals. I’m not so sure goal setting, however admirable, would be top of mind for someone using the website. However, I know when I was diagnosed that one of the things I needed to do was to gather notes and information on all of the research I had to do to understand my particular situation and my particular diagnosis. I could see how this would have been helpful to me, to have all my notes/thoughts in one place.
2. There is a community aspect, which is one of the most appealing aspects. When you set up your registration, you are asked to specify if you are a patient, family member or caregiver. The site allows you to add contacts amongst the community, much like you might bookmark or “friend” someone. The website offers up recommendations of individuals you may wish to contact. This allows you to find others that you can converse with and tap for knowledge or just to share with.
3. There is a blog feature so you can share posts.
4. The website provides “guided services” including “Targeted Tips 4 Life”, which are curated and vetted by medical professionals, videos and e-books and “coaching” services. There are charges for these services, and while the charges for the ebooks and tips are fairly nominal at $10, the coaching is $75/hour. They represent that these are professional services, and there are biographies of the coaches that you can read. I can’t say I was completely impressed with the individual coaches biographies. They are not heavy on health-related or medical degrees. Color me skeptical here.
There are a lot of upsides to a tool like this — I do think the community aspects and centralized access to tailored information could save a lot of time and effort in understanding and researching your personal cancer situation. And I do like the community aspect. The downsides might include whether you are comfortable using a web-based tool for recording such personal information, and whether or not the community is developed enough to be useful. And of course, while use of the site itself is free, some of the services have a cost. I would feel better if this was a non-profit entity, but it appears to be for-profit. The website was founded four years ago, but I only recently joined so I don’t have a good sense of the community yet.
I am by no means endorsing this site, but I think it is a very serious effort with ties to existing cancer foundations and communities that I certainly respect. Here is a partial list of their affiliations:
National Cancer Institute, SeventyK, Prostate Cancer Foundation, Volunteers of America - Veterans Services, Georgia Regents University Cancer Center, SENS Research Foundation, weSPARK, Mfoundation, Yahoo Health, Livestrong, Children’s Hospital of Orange County
What do you think? Take a look around at the links I provided, and chime in if you like. Is this a good thing or are you more on the “meh” side?
I hope everyone had a peaceful Labor Day weekend. I’ll be around most of the evening to converse.