Please turn your anger and sadness into something good as a way to honor your loved one. I might be able to help you with that. At the Chris Elliott Fund, we talk “LIVE” all the time as well as via email/social media & online support groups with many caregivers, loved ones and the families of brain cancer patients that have passed away. Something I have noticed is that often times, there is anger and sadness expressed when a new treatment or a possible new treatment/clinical trial becomes available or anger arises when the loved one is not able to participate in a clinical trial for various reasons. Most of the anger and sadness stems from the following:
- Receiving “Compassionate Use” of the treatment under study is so hard to get, and
- The parameters to get into a Clinical Trial are very tight (this is what Al Musella, The Musella Foundation” is working on.) The idea would be to lesson these parameters and to make the actual time spent in the clinical trial shorter.
Brain Tumor patients and their loved ones often feel anger and sadness that their loved one did not get the opportunity to have a new and/or promising treatment. I understand this and even today, 12.5 years after my late husband, Chris Elliott, has passed away from this disease, I often think that although I am beyond delighted as a brain cancer patient advocate that new and promising therapies are being developed and even though I often have something to do with “IMMEDIATE ACCESS” of these treatments for brain cancer patinets, I still think about how great it would have been if Chris had had access to these treatments too.
Having said this, I do want to share that although there is a piece of me that is saddened that Chris did not live long enough to see these new treatment options, I am also beyond THRILLED when I learn of new possible treatment options and am thrilled because then, I have something new to talk to brain cancer patients about and to try to get them into this treatment. This is what I do to honor my late husband’s life.
While writing this BLOG post, I realized that it may be helpful to share that the role of CEF’s Health Information Concierge (HIC)/Patient Advocate (PA) is to help those seeking advanced treatment and to help them get into the treatment fast. The role and goal of the HIC and the mission of the CEF is to shorten the GAP it takes from a patient’s brain cancer diagnosis and the time it takes for the patient to learn about and get into advanced treatment/clinical trial. CEF feels that if we can do this, we can aid the patient who is seeking advanced treatment to fight their disease because let’s face it, present standard protocol to treat GBM is not creating a healthy amount of survivors. All of us want to change this – we want these patients to have IMMEDIATE ACCESS to advanced treatment that may save their life.
The CEF feels that if we can have patients and their families contact us immediately at diagnosis or better even yet, have the general public know that they need to contact us at the time of diagnosis and BEFORE SURGERY, we feel that we can cause a “shift” in and close the “GAP” between a brain cancer diagnosis and the time it takes to learn about advanced treatment and the time it takes to get into a clinical trial. If we can do this, we believe we can give the patient and their loved ones more “HOPE” in fighting this disease and from a research standpoint, we feel that we can “feed” the research with more tumor tissue as well as more patients. When we are successful in this endeavor, there is a change then that it will become easier to get into clinical trials and the length of the trials themselves will be shortened.
I invite you to learn more and join us in this effort at www.ChrisElliottFund.org. I also invite you to learn more about our mission and day-to-day work by checking out the job description for our Health Information Concierges. In early 2015, CEF is expanding our free brain cancer patient support services and will be hiring another Health Information Concierge, (link). Please consider spreading the word and joining forces to help those families and loved ones of brain cancer patients know and understand that we “hear” you and understand your anger and sadness that your loved one did not have IMMEDIATE ACCESS to advanced treatments. We know the system is broken. I’d like your help fixing it. [email protected]. We CAN DO THIS Together!