Sionna Therapeutics’ Post

Make mine a DOUBLE !! 🍹🍸 Another day in paradise starts off with a juicy cocktail, sadly no umbrella or pineapple with this one though. 🍸 ☂️ This is my treatment cycle, every two weeks, where the party starts in the infusion lab around 8am and finishes late in the day around 3pm, I am then fitted with a portable slow release chemo pump, which is with me for 2 full days and sent home. Once the portable chemo pump is empty, I then get to return to the hospital to be “disconnected”. So what’s it like at home I hear you ask, well I feel pretty rubbish for 4 to 7 days depending on the cocktail consumed (which changes based on blood test results taken that morning) eventually the “chemo fog” lifts, I then normally have about a week of feeling “human”, before we get to do it all again. Is this monotonous“absolutely” Is it draining “bloody oath it is” is it life saving “damn straight it is” ………. this has been my life for the last 22+ months. I am often asked how I maintain my spirit and sanity, as this is pretty brutal. My answer is normally along these lines. 1. Being grumpy IS NOT GOING to CHANGE my situation, so you might as well SMILE through the craziness. 2. The support from MY VILLAGE is awesome, they are always there to help, no matter what the ask is. 3. The NURSES and VOLUNTEERS working the ward are just awesome and nothing is to much trouble - I certainly have a new found respect for them for their profession. 4. There are LEGENDS and AMAZING PEOPLE you don’t know, helping you out are everywhere, NOT all HEROES are visible or wear capes !! Cancer hits those of all ages and backgrounds, and affects them in different ways, it does not discriminate - yes, it’s brutal as some are taken far too soon, others get to fight a long battle with many cured, and whilst the diagnosis may be the same, treatments differ vastly. Outside of those that inspire me as mentioned above, it’s hearing their stories of personal courage which are hugely inspiring and provide that continued driving force. #CancerCouncil #BowelCancer #LivingTheDream #SmileThroughAdversity #NursesRock #TheSydneyAdventistHospital #SANFrequentFlyer #KPMGAustralia

The human mind. Wow. Fascinating and complex. An example? Today was your scribe's final day of facility dialysis. Full steam ahead with what's called peritoneal dialysis. A promising step forward in fighting off a rare bone-marrow disorder called Amyloidosis, destruction of kidneys, dialysis and taking the necessary steps to get on transplant lists. Lots of good stuff happening but the mood is melancholy at this moment. Why? This 65-year-old dude thinks of the dialysis companions who became good friends the past nine months. That's what happens when you spend ample time together three days a week tethered to live-saving equipment. As I walked out the doors of Fresenius this morning tears were strolling down this sentimental fella's cheeks. I'm gonna miss my friends. I pray they get better in their battle with kidney disease. Driving home marinating on all that? Suddenly, it hit me like a lighting bolt. "Hey knucklehead, that's what "Drive for Five" is all about. Go use your God-given gifts and talents, encourage others to join and raise awareness to the value and significance of live organ donation." Duh. My buddies in dire need of help? Today was not good bye it was more like, "Your buddy will be back with reinforcements through educating folks to, "Share your spare, save a life, Leave a priceless legacy." I choose to believe there's lots of folks out there at least wiling to explore the possibilities of sacrificing what they have in abundance for the benefit of another human sorely lacking a healthy kidney, liver or bone marrow. Mind over matter. #goodbetterbest

The human mind. Wow. Fascinating and complex. An example? Today was your scribe's final day of facility dialysis. Full steam ahead with what's called peritoneal dialysis. A promising step forward in fighting off a rare bone-marrow disorder called Amyloidosis, destruction of kidneys, dialysis and taking the necessary steps to get on transplant lists. Lots of good stuff happening but the mood is melancholy at this moment. Why? This 65-year-old dude thinks of the dialysis companions who became good friends the past nine months. That's what happens when you spend ample time together three days a week tethered to live-saving equipment. As I walked out the doors of Fresenius this morning tears were strolling down this sentimental fella's cheeks. I'm gonna miss my friends. I pray they get better in their battle with kidney disease. Driving home marinating on all that? Suddenly, it hit me like a lighting bolt. "Hey knucklehead, that's what "Drive for Five" is all about. Go use your God-given gifts and talents, encourage others to join and raise awareness to the value and significance of live organ donation." Duh. My buddies in dire need of help? Today was not good bye it was more like, "Your buddy will be back with reinforcements through educating folks to, "Share your spare, save a life, Leave a priceless legacy." I choose to believe there's lots of folks out there at least wiling to explore the possibilities of sacrificing what they have in abundance for the benefit of another human sorely lacking a healthy kidney, liver or bone marrow. Mind over matter. #goodbetterbest

In the 2 ½ years that he battled cancer, I never felt like I was journeying alone. While we have little family around, my friend circle runs deep, and through the lives of these women, I was able to experience being held well.  My friend Sue, a physician by training, was the first to hear the diagnosis. She instinctively knew that I needed the friend and not the physician -  someone to listen and ask questions, not prognosticate or to provide possible solutions. Lea sat with me on the phone while I sat in the empty waiting room at 8pm awaiting results of the much-longer-than-expected surgery when no one was bringing me updates. Here it was time for those encouraging words “Bev, if something catastrophic had happened, they would have told you. He’s still alive.” Yes. Encouragement and hope. A year later, Esther, his favorite caregiver I hired when he was welcomed into in-home Hospice care turned out to be not only a caregiver, but also an unofficial pastor and counselor as well. My friend for over 20 years, Corinne, knew despite my protests, that we would want ready-to-grab meals prepared in the final days. Practical needs anticipated and met.  I could fill a small book with examples of the emotional and physical provision provided by those whose mutual friendship has been rooted in years of tending to each other, holding each other in all of the storms and joys that life brings. It’s in our relationships that we get to show each other the best of what Life has to offer. We get to BE the hands and feet of Love. Offering what we have to serve each other, using the experiences and training we have had to lift each other up, and journey with each other. We’re not meant to do this life alone. We are meant to live in relationship with each other - look at nature and ecosystems for further evidence of this. No wonder that thousands of studies show that those with strong social connections both live longer and are happier. Reflection Questions: How has someone in your social circle recently met your needs? Is there someone that you might be nudged toward walking closer with? 

The day I became a cancer caregiver, I thought I was signing up for heartache. Instead, I found an unexpected path to personal transformation. When cancer entered our lives, I steeled myself for the challenges ahead. What I didn't expect were the profound moments of joy, growth, and connection that would emerge from this difficult journey. Here are 3 surprising rewards I discovered while caregiving: 1. Unparalleled intimacy: Facing mortality together strips away pretense, leading to raw, honest conversations and a closeness I never knew was possible. 2. Rediscovering simple pleasures: A shared laugh over a bad joke or the warmth of holding hands became profound sources of happiness amidst the struggle. 3. Personal growth: I uncovered reserves of strength, patience, and compassion I didn't know I possessed. This experience reshaped my priorities and values for the better. To my fellow caregivers: Your role is invaluable. In the midst of challenges, I hope you also find moments of unexpected light. Have you experienced surprising positives while supporting a loved one through illness?

Health Tips by Myra: Live well, Be Prepared I have written often about the importance of preparing well. Having an Advanced Directive, a Molst (or POLST order, depending on where you live) expressing your desires with family for what you want in the event of becoming seriously sick. In this recent article in The Washington Post, a woman dying of a rare cancer speaks of how she wants to spend her remaining time as well as the benefits of hospice well before her condition becomes worse. It’s a poignant message for everyone. #bepreprepared #powerofhospice #enjoylife #advanceddirectives https://lnkd.in/ezWfxkQu

May is #womenshealthmonth. It's the perfect time to raise more awareness to an emerging #womenshealth issue, Granulomatous mastitis. What is it? A chronic inflammatory #breastdisease that mimics #breastcancer. If the disease continues to be unresolved the potential risks of developing breast cancer increases. This has unfortunately happened to several #women when their #doctors have failed to help them resolve their condition. There are many #etiologies and ways to contract it, even #breastfeeding. Though, the challenging part is the #medical community recognizing what those are, as well as the comprehensive testing available. My own doctor even touched on this in my #book. Back in 2017, what I thought was going to be a normal routine business trip, turned into a trip that would forever change my life, as I contracted this #disease while on that trip. My Erin Brockovich-like story is one most find shocking. I even had the opportunity last year to share my story with Erin Brockovich in person. When she's referenced, as you can imagine, there was an environmental connection to my story. I was forced to become my best #advocate, finding both the test that would give us answers, and tracing my steps to find out how I contracted it. Check out my book to learn about the year and a half of agony I endured. Our one FB support group alone has grown well over 2,000 since I joined. As a #survivor, #author and advocate for GM, it's my honor and duty to recognize this important month. God gives his biggest battles to his strongest warriors. My #scars, I call warrior wounds, are daily reminders for me to keep being a voice to this disease, and for others facing this horrendous journey around the world. #Granulomatousmastitis #womensupportingwomen

May is #womenshealthmonth. It's the perfect time to raise more awareness to an emerging #womenshealth issue, Granulomatous mastitis. What is it? A chronic inflammatory #breastdisease that mimics #breastcancer. If the disease continues to be unresolved the potential risks of developing breast cancer increases. This has unfortunately happened to several #women when their #doctors have failed to help them resolve their condition. There are many #etiologies and ways to contract it, even #breastfeeding. Though, the challenging part is the #medical community recognizing what those are, as well as the comprehensive testing available. My own doctor even touched on this in my #book. Back in 2017, what I thought was going to be a normal routine business trip, turned into a trip that would forever change my life, as I contracted this #disease while on that trip. My Erin Brockovich-like story is one most find shocking, even to my medical team. I had the opportunity last year to share my story with Erin Brockovich in person. When she's referenced, as you can imagine, there was an environmental connection to my story. I was forced to become my best #advocate, finding both the test that would give us answers, and tracing my steps to find out how I contracted it. Check out my book to learn about the year and a half of agony I endured, all while being unable to work. Our one FB support group alone has grown by over 2,000 since I joined. As a #survivor, #author and advocate for GM, it's my honor and duty to recognize this important month. God gives his biggest battles to his strongest warriors. My #scars, I call warrior wounds, are daily reminders for me to keep being a voice to this disease, and for others facing this horrendous journey around the world. #Granulomatousmastitis #womensupportingwomen

Today is World Transplant Day, a day of profound reflection and gratitude for me. It reminds me of the preciousness of life and how fortunate I am to continue pursuing my dreams. I am deeply grateful to the family of my deceased donor, whose selfless gift has given me this opportunity. However, this day is not about my story; it is about raising awareness. Early detection of kidney disease or renal failure can be as simple as a blood test, allowing for timely management and treatment. Additionally, becoming an organ donor is straightforward: complete an online registration or a registration form and have a discussion with your family. Here are a few statistics to consider: ● In 2022, the median wait time for a kidney transplant was 2.5 years. ● At the end of 2022, 1,279 people were on the kidney transplant waiting list. ● In 2022, 938 people received a kidney transplant, including 225 from living donors. #kidneyhealthaustralia #targetfailure #backupyourbullshit