I love how Susan discussed the importance of Virtual Support Groups for caregivers, and how it enables the caregiver to get the support they need without having to leave their loved one. She tells the story of how the AnCan Caregiver support group formed from our Virtual Prostate Cancer Support Group, and appreciated our founder Rick Davis for not only providing support groups for prostate cancer, but recognizing the caregiver needs support too.
Susan voiced so many issues caregivers have within the healthcare system. She expressed how providers need to realize that while this may be “their millionth time”, it’s the caregivers first time in this space. Communication is so important with everyone involved in the care of an individual. She also talked about a very painful moment where she felt abandoned by the oncology team. Fellow Caregivers Virtual Support Group moderator Renata Louwers spoke of Susan’s experience:
“I think your story about feeling abandoned by the oncology group is such a powerful one and all too real. I’m glad you talked about it. I know providers certainly don’t set out to leave patients and families feeling that way, but it can often feel that way.”
We know Susan and all our other moderators will bring positive change in this area!
You’ll also hear Susan’s advice on Palliative care (plus why you should go sooner, rather than later.), communication agreements, and remembering a loved one during the holidays.
Our Board President, he prefers this to Chair(!), reflects this week on a conversation many must face!
Recently AnCan in partnership with UsToo initiated a webinar series titled; The Talk. The series focused upon the significance of conversations with family, particularly our children regarding the implications of a diagnosis and treatment for cancer. My younger son Jeffrey and I participated in the panel of the first webinar speaking about the reality of genetic driven prostate cancer and the possibility of passing it on to my children.
Last night I was thinking about another “TALK” which was a big part of my experience this year and one which is often difficult to have. In early May of this year my one sibling, my sister passed away at the age of 78-1/2 years. She was kind of a renegade and a rather unique woman. Her first love and passion was riding motorcycles. When she died, she left 3 bikes in her garage including her 1981 RS -1100 BMW. She began her motorcycle experience way back in the 1950’s as a beatnik in Greenwich Village. Later she made numerous trips to ride in Asia, Europe and all over N. America attending many BMW rallies.
I mention this because as her health declined in her later years, she was quite clear with me about not wanting to prolong her life when she could no longer ride her bikes. She and I had numerous “talks” about end of life issues. She always thought she would “go out” in a fiery crash, but alas it was not to be. She broke her hip and because of many other leg problems it was doubtful that she would be able to walk again. After hip surgery she was moved into a nursing home where she lasted about one week.
Her last couple of weeks she was pretty foggy and incoherent but she and I were able to connect via Face Time a day or two before the end. She knew me, and expressed her wish to get out of the facility and go home. I told her that until she could master a walker she could not do so. She knew that was not to be and I asked her if she was going to go to “Plan B”? She said; “Yes, it would be Plan B”. A day or two later she refused her food and meds and removed her oxygen and facilitated the end of her journey. She knew she lived a remarkable life and lasted beyond her expectations and was ready to depart.
I am very thankful that we made the space to have, The Talk so that we both were prepared for the unexpected. It made the transition so much easier. I guess I bring this up because it is kind of the elephant in the room for all of us and so many ignore this reality and put off The Talk. Most likely very few if any of you who participate in our Low and Intermediate Prostate Cancer Virtual meetings will pass on as a result of this disease, but still the fear tends to lurk in the mind.
One of our earliest, and certainly most enduring, non-prostate cancer moderators has been nationally recognized caregiver advocate, Renata Louwers. In barely 12 months, if that, Renata lost her first husband, Ahmad, to bladder cancer back in 2014. Since that time she has tirelessly campaigned to establish the Caregiver perspective on the medical radar; not to mention all the fundraising she has done for BCAN and bladder cancer …. G-d Bless Her!
This past week Health Union published the second part of an article Renata wrote for their Bladder Cancer Page – both parts are linked below. And no, they are not specifically about bladder cancer but more about her experience of being a peer moderator for a videochat virtual group that AnCan runs for Advanced Cancer Caregivers.
The easiest way to find more of Renata’s articles …. and there are so many excellent ones, especially for The Philadelphia Inquirer, is to google ‘Renata Louwers, medical journalist‘; do it and you’ll have no regrets!
AnCan’s heartbeat thrives on helping peers; it races when our Volunteers, our lifeblood, find satisfaction in the work they perform for us at AnCan. We love our volunteers; we especially love you, Renata xox
To receive reminders for our Advanced Cancer Caregivers Group, or any others that are all free & drop-in, click here.
Most who particpate in AnCan’s programs know we are massive proponents of involving palliative care, or as UCSF calls it ‘Symptom Management”, early in your treatment path – so we stronlgly recommend attending this CureTalk webinar.
Dr. Mike is a good friend of AnCan, as is CureTalk – so please don’t miss this presentation. You can register here.
Editor’s Pick – Low PSA with high volume metastasis (rd) + successful treatment for ‘young’ man with de novo metastatic disease
Topics Discussed
de novo Mx with low PSA; clinical trial conflicts; biopsy sample from primary vs. Mx tumor; relevance of bone density tests; young de novo Mx man finds successful treatment; debulking the primary; when the end may not be the end!; bone biopsies; testing for PSMA avidity; PSMA scan availability in Covid times; testosterone swings; shipping delays for abiraterone; specialty pharmacies; what is the ‘doughnut’ hole?; abscopal/immuno effect from RT
Chat Log
scott (to Everyone): 5:05 PM: is this link the same link for all meetings?
Ken Anderson (to Everyone): 5:06 PM: scott yes this is the same meeting room
scott (to Everyone): 5:07 PM: 100 degrees isn’t fun…
Dell Jensen (to Everyone): 5:38 PM: Both Lupron and Docataxel
Dell Jensen (to Everyone): 5:43 PM: Rick is correct, treating the primary is critical
scott (to Everyone): 5:48 PM: is docetaxyl an infusion or a pill?
Dell Jensen (to Everyone): 5:48 PM: infusion
Ken Anderson (to Everyone): 5:49 PM: infusion once every three weeks
scott (to Everyone): 5:49 PM: do you do docetaxyl if the Zytiga I am on isn’t working?”
Ken Anderson (to Everyone): 5:49 PM: you can for sure do both at the same time…
scott (to Everyone): 5:51 PM: does the docetaxil have hard side effects?
Dell Jensen (to Everyone): 5:51 PM: osteoporosis is a result of ADT treatment
Dell Jensen (to Everyone): 5:51 PM: I definitely concur
Dell Jensen (to Everyone): 5:52 PM: my side effects were minimal, infections were my problems.
Ken Anderson (to Everyone): 5:52 PM: all chemo has side effects.. doce has some for sure and all are post on the web.
scott (to Everyone): 5:53 PM: thanks ken
Peter Kafka (to Everyone): 5:54 PM: I had a specialized genetic test from MIRA labs that gave me a risk assessment for developing a grade 2 or greater adverse reaction to PD1/PDL1 agent therapy.
Russ Smith (to Everyone): 6:28 PM: Good night all. It’s been a long day.
scott (to Everyone): 6:31 PM: is david muslin head of answer cancer foundation?
Len (to Everyone): 6:35 PM: No, Rick is head of AnCan
scott (to Everyone): 6:36 PM: I sent a donation to ancan fdn in honor of rick and have heard nothing
Len (to Everyone): 6:36 PM: It will be acknowledged soon, if in fact they received it properly.
scott (to Everyone): 6:37 PM: thanks…just want to make sure rick is honored by donation
scott (to Everyone): 6:39 PM: is speaking freely 8 pm az time?
Rich Jackson (to Everyone): 6:43 PM: Speaking Freely starts at 8pm EST.
scott (to Everyone): 6:43 PM: thanks
Rich Jackson (to Everyone): 6:43 PM: Same connection as this call.
scott (to Everyone): 6:53 PM: who is the gentleman now speaking?
Dell Jensen (to Everyone): 6:53 PM: Correia
Dell Jensen (to Everyone): 6:55 PM: Are there other compounding pharmacy?
Dell Jensen (to Everyone): 6:57 PM: I have local one that is in Rock Island, IL
Our Board President, he prefers this to Chair(!), reflects this week on a conversation many must face!
