by Rick Davis | May 15, 2020 | Recent News, Advocacy, Cancer Resources, Health Resources, Men's Breast Cancer, Ovarian Cancer, Prostate Cancer, Women's Breast Cancer
Congrats to AnCan Advisor and Active Surveillance Prostate Cancer Virtual Support Group Moderator, Howard Wolinsky, for receiving the Best In-depth Report or Series Lisagor Award from the Chicago Headline Club for his article in Chicago Medicine on “The debate over gadolinium-based contrast agents”
For those who attend this group, they are well aware that gadolinium contrast is a frequent topic of conversation. This may have even spurred Howard into his excellent in-depth report on the dangers associated with the use of this scanning contrast.
Onward & upwards, Howard ….. keep generating that social profit!
by Rick Davis | Apr 26, 2020 | Health Resources, Advocacy, Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Men 'Speaking Freely', Men's Breast Cancer, Multiple Sclerosis, Prostate Cancer, Recent News, Sarcoidosis
Peter Kafka, our Board Chair, is currently in the midst of chemo. He relates first hand why men must to get off their high horse and ask for help – it can solve many medical problems simply! (rd)
ASKING FOR HELP
Why is it so difficult for men to ask for help? Perhaps many men view it as a sign of weakness if we can’t handle a challenge on our own. I have had plenty of occasions to ask myself this question over the past number of years. In terms of changes in my body and internal mechanisms I have noticed that I can “put up” with many things for long periods of time under the belief that whatever it is that is going on will go away or I will adapt to the changes. When I think about it now, I realize that this is a pretty stupid approach. An independent nature can get one in big and unnecessary trouble.
For many months before I was diagnosed with Prostate Cancer, I was symptomatic with urinary retention. In simple terms, I could not piss. This is not a normal condition which I knew, but somehow, I talked myself into believing that it was a sign of aging and probably nothing more than an enlarged prostate. It did not help that my urologist was not very attentive and did not give much more than a passing thought and a prescription for Flowmax for my condition.
After months of pushing on my gut in order to force out small amounts of urine to take the pressure off my bladder, it was a close friend who pushed me to seek medical help. I did, and as they say; “The rest is history”. But I went through many months of needless discomfort and agony before I humbled myself enough to seek help. Was it embarrassment? Arrogance? Independence? Perhaps a bit of all of these that kept me from asking for help.
I mention this because I am still learning thIS great lesson. In my current regimen of chemotherapy, I have noticed marked changes to my vision. My first thought (self-diagnosis again) was that it must be cataracts. Perhaps the chemo was accelerating this “natural” phenomenon that comes with aging for many of us in our 70’s. But the changes in my vision were substantial and rapid enough that I thought it would be worth mentioning to my medical oncologist during a recent telephone consult. I included this item in my list of “talking points” which I put together for each and every one of my medical appointments. It is too easy to forget stuff. I have learned this the hard way.
The answer came quick. It was not the chemo; it was the Prednisone. Sure enough, when I searched out the side effects of Prednisone, the blurry and cloudy vision I experienced was one of them and even at the low dose I was taking. I inquired about why I needed this steroid, I was told that for some it helped stimulate appetite and energy levels. With my doctor’s approval I weaned myself off the prednisone and decided that I would try and continue my chemo regimen with out it.
So, I guess I am still learning the great lesson: Be your own best advocate and ask for help!
by Rick Davis | Apr 23, 2020 | Advocacy, Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Complementary Medicine, Health Resources, Men 'Speaking Freely', Men's Breast Cancer, Multiple Sclerosis, Ovarian Cancer, Prostate Cancer, Recent News, Sarcoidosis, Women's Breast Cancer
Some of you may already be aware of Janssen/J&J’s annual patient advocate conference,
HealtheVoices, that is usually by invitation only based on a competitive application process. This year’s pandemic has sent the Conference
virtual, and it is open to
ALL! The conference covers the spectrum of conditions from mental to physical, and from cancer to rare diseases.
#HealtheVoicesLIVE 2020 is this Saturday, April 25 starting from 11 am – 8.30 pm Eastern. You can find the full agenda and link to join
HERE. Feel free to pop in and out during the day and tune in to presentations and events of interest to each of you.There are presentations, interviews and even small group breakouts allowing you to interact with leading national advocates for differing conditions.
Please note the links to join change for the morning and afternoon sessions:
For the best experience, join the meeting via Google Chrome
I will be presenting in the 3rd Hour; the session starts at 1.30 pm Eastern and I am due up first as part of 4 flash sessions followed by a Q&A. I will be offering tips on virtual moderation – a skill many patient advocates have had to quickly familiarize themselves with in the past few weeks. But as you all know, we’ve been at this game for many years!!
Please join me and HeV, enjoy the conference, learn a little, and above all – stay safe, well and have fun!
Onward & upwards, rd
by Rick Davis | Mar 29, 2020 | Health Resources, Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Multiple Sclerosis, Ovarian Cancer, Prostate Cancer, Recent News
https://www.inquirer.com/health/expert-opinions/amid-coronavirus-stay-at-home-order-healthy-people-are-learning-ways-sick-opinion-20200326.html
Our good friend John Novack is responsible for Patient Engagement and Communications at Inspire ….. there are a few ‘Head’, and Senior VP’s sprinkled in their too! John often sources great articles and writers for major publications , one of which is The Philadelphia Inquirer, He has directed our moderator, Renata Louwers, their way.
This latest Opinion piece that appeared last Thursday struck a big chord with me … and I hope it will with you too, especially if you have lived with serious illness that has compromised your immune sytem and limited your movement.
Onward & upwards, rd
by Rick Davis | Mar 25, 2020 | Cancer Resources, Advocacy, Health Resources, hospice and palliative, Recent News
Some of you already know one of the most remarkable members of our Advisory Board, palliative care doc, B.J.Miller. If you don’t, then listen to his TED Talk along with 10.5 million others!!! We are all getting ample Covid19 e-mail …. but if you got a missive directly from Bill Gates, I bet you’d read it.
Well today I received an e-mail from my buddy, B.J.s institute, The Center for Living and Dying. It contained his thoughts on the surreal crisis we all find ourselves in – and for me it truly struck a chord. To put it in my Marxian (Brothers) terms … are you a man or a mouse??? Read B.J”s thoughts and reflect – btw, it was mailed off-center .. and personally I think that is just perfect!!
And in case you didn’t get my allegory, Bj’s thoughts fall into the same category as Bill Gates – at least for me! (rd)
dear folks,
here we are, struggling and about to struggle more. i hesitate to add to the pile of missives flying around the ether, but i do want to shout hello and maybe sound a subtler note with a few reminders.
remember that, if we are in-tune and honest with ourselves, every one of us already knows vulnerability. we may have hidden it away or covered it over with self-assuredness or fortune, etcetera, but underneath our colorful coats has always been a sensitive, naked, tender, affectable critter. anyone who’s been ill or injured or disabled, loves someone who has, or is simply a sensitive soul, knows this feeling well where nothing may be taken for granted. the ground beneath us has never been as solid as we like to think it is. in other words, on some base level, we are not in wholly foreign terrain.but this time, our covers are being pulled collectively and simultaneously. that may be terrifying, and it’s also cause for hope. us versus them doesn’t make sense anymore, if it ever did. now, finally, we get to share the big common reality out in the open. we may be removed from one another, but we have never been less alone.
our humanity is being summoned, which means we will be seeing our real power. it’s soft and immense and adaptive and willing to get messy. we will also see ugliness and selfishness, in ourselves and others, but I bet the farm our gnarls will be overwhelmed by our beauty. though the cost will be hard to bear, we are about to learn so much. it’s a matter of survival now, not in the abstract, and that’s when we humans get serious and come together.
we are all being reacquainted with life’s basics and the awesome power of nature, including human nature. this goes for ourselves as well as for the systems we’ve invented – healthcare, government, economic. all are being tested now, and so all have a shot at evolving.
it’s also worth reminding each other that “social distancing” – usually a problem and now the solution – only pertains to physical isolation. we can still love each other. we must. we can still communicate over the airwaves. we can still mean well by each other. however you do it, keep ‘touch’ alive. losing touch can result in losing empathy, and that would be one sure way to make a bad situation worse. instead, let the longing build; it will help stave off loneliness and nihilism, and it will keep us feeling. those of us who have experienced compassion, whether coming from us or towards us, know that it’s always there. it just needs to be called-up and exercised. it needs an excuse to show itself, and suffering provides that excuse. one day, we’ll be able to directly share all that affection again, and you can bet it will be with heightened appreciation and passion.
from years of working with people who are dealing with the unimaginables of life, i can safely state that people are stronger than they tend to realize. we are. maybe it’s more accurate to say we are differently strong from the conventional, muscle-bound notions of strength. this bigger and suppler sleepy inner strength just needs a reason to flex. and here we are.
in love and grief and solidarity, XOb
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by Rick Davis | Mar 16, 2020 | Health Resources, Advocacy, Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Men 'Speaking Freely', Men's Breast Cancer, Multiple Sclerosis, Ovarian Cancer, Prostate Cancer, Recent News, Sarcoidosis, Women's Breast Cancer
In the dim, distant past of 2011, or was it 2012, I had just been kicked out the support group I co-moderated by a very insecure lead. Rather than the one-on-one interview style he practiced that made the large, weekly group feel they were eavesdropping on a private conversation, I worked hard to promote conversation and bring everyone into play. If the back-and-forth developed a life of its own, moderation was successful. Like a tugboat, moderators could just nudge a little here and there to keep discussion on track while sprinkling information and education into the wake.
So when a good buddy of mine suggested we start an online TV channel, I took him seriously. My friend had been in the virtual meetings world pretty much since inception and encouraged me to explore. I, however, had no interest in talking at an audience – I wanted to converse and interact with it. Support groups were much closer to my virtual ideal than a TV Channel. Moreover, virtual support groups tackled three issues where physical groups got a resounding ’F’.
- Geographical ‘disabilities’ were removed – no one was restricted by distance or remote location
- Physical disabilities evaporated – everyone could join no matter their state of mobility
- Social disabilities faded – those who felt uncomfortable in a physical group or suffered from agoraphobia could attend, and those who were just plain shy could ‘lurk’.
To my amazement in 2012, I found only two (2) virtual support groups on the world wide web; one for post-partum depression, and the other for dieting. In the two-dimensional virtual world of written forums, there were options and I quickly became a celebrity. By providing solid experience and guidance – never medical advice!! – many sought my input. Then I discovered a telephone support group based out of the northern Midwest …. and from thereon history was made.
As possibly the first peer-led support group for any condition, I turned what originated as a men’s psycho-social support come drinking club into a bona fide, condition driven, virtual support group. By advertising on the written group forums, attendance grew rapidly. We went from one to two monthly meetings. Then we split the group by severity of disease – newbies did not want to be chatting with those suffering advanced disease. And soon we had to split again as numbers exceed 30+ participants per group. Within a couple of years, we had four then six groups each month; and, we received endorsements and co-sponsorship from a major support and education non-profit.
The phone platform also seemed inadequate just as virtual platforms became affordable. No longer did you have to commit thousands of dollars to host on WebEx when GoToMeeting and then Zoom catered to the individual consumer. Adding visuals created yet another dimension, bringing the virtual support group experience even closer to a physical meeting. Video was always optional, and you could join by phone as well as online – we strove to maintain the lowest barriers to entry. And our meetings were always free and drop-in … no registration required.
Gradually our moderators learned best practices – how to keep a meeting moving; how to avoid people talking over each other; how to ‘listen’; how to bring everyone into the virtual group discussion. In 2016, our vision got formalized when we founded a non-profit, Answer Cancer Foundation, starting with the six groups then in existence. While all for one condition, my vision was much wider.
We knew that if it worked for the condition we were living with, this same experience could work for other illnesses and conditions …. especially for rare diseases where even in the best circumstances gathering a physical support group was challenging. And for conditions beyond cancer …. and for more than just those living with the condition – like caregivers. In 2019, Answer Cancer Foundation became AnCan as we launched a multiple sclerosis group. And as I write today, we host more than 20 meetings each month for cancer and non-cancer. We are proud to offer two virtual groups for rare diseases, and about to introduce new virtual meetings for blood cancers, and for ovarian cancer.
So here we are in 2020, in the midst of a global pandemic living within the parameter of social distancing. Many are suddenly recognizing the value of virtual meeting places. Some, like my nemesis the lead moderator mentioned in the first paragraph, had the audacity to tell a telcon of support group facilitators last week, that Zoom is inexpensive and everyone’s answer; he had tried it for the first time earlier in the week. I could not resist piping up that AnCan currently hosts nine (9) virtual meetings per month just for our cancer; that we have been doing so for eight years with our co-sponsor who, by the way, was hosting the telcon; and, that we would be delighted to share our know-how with anyone that needed help. And oh yes … that GoToMeeting offered a free room over the next 3 months for anyone that needed!
