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Recurring seizures a common challenge for brain cancer patients, including me. So grateful to Dr Helen Wheeler my excellent neuro-oncologist for her expertise in managing the anti-seizure meds! Here’s an update from my perspective.
39,194 просмотров • 2 лет назад •via X (Twitter)
Комментарии: 33
@ProfRScolyerMIA @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA Not only are you receiving groundbreaking treatment but you are also documenting publicly your journey through this. It is so informative and you are inspiring with your health updates. Hope you enjoy a wonderful festive season with family and friends.
@ProfRScolyerMIA @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA I so appreciate your updates, Professor Scolyer, and I hope your sterling efforts will increase knowledge of how to treat this condition, first benefiting you. All the same, I wish this was not happening to you. May you and yours have an enjoyable, peaceful festive season.
@ProfRScolyerMIA @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA What wonderful fine details you are learning & uncovering. They will no doubt benefit both yourself & future patients. Your scientific brain & your courage are admirable
@ProfRScolyerMIA @paintsandsings @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA Thank you Richard for posting of your treatment. A gigantic contribution to brain cancer research. Courage. Bravery, integrity. Good man.
@ProfRScolyerMIA @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA Wishing you all the best Prof. What a warm and generous person you are sharing your story here. I think it is a very selfless gift, helping to dilute the understandable fear people experience with quiet optimism. Warm wishes to you and yours.
@ProfRScolyerMIA @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA Good, clear information to help people understand what it might be like for someone in your situation. You’re doing a good job helping people 🙏💖
You’re so lucky to have Dr Wheeler. My initial saviour was Dr Paul Thompson then Andrew Hunn. Whilst I didn’t have surgery, everything you’ve spoken about has happened to me too. I am so interested in what you’re going through. Much love, respect and may your Christmas be great. Max 💖💖💖
@ProfRScolyerMIA @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA Thank you for sharing - will pass onto my brother who is also in Melbourne undergoing immunotherapy for Glioblastoma
@ProfRScolyerMIA @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA Such courage! Such frankness, thank you.
@ProfRScolyerMIA @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA You are so brave educating us to hear about your journey of discovery.
@ProfRScolyerMIA @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA Cheers Richard, always good to see your information updates, how you’re feeling in the often challenging, ongoing process of improvements in your treatment plan & hopefully ensuring you continue to feel as well as possible as the treatment regime continues to improve your health
@ProfRScolyerMIA @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA Good on you Prof for shedding light on the challenges related to seizures. Hope you & your team find the right combo for you. All the best to you, family and medical team.
@ProfRScolyerMIA @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA Thank you for the medical updates and for sharing your journey. Best wishes for recovery and hopefully a cheerful and relaxing Christmas break with family and friends. 💕🙏🤗
@ProfRScolyerMIA @PCKJ3627 @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA So Richard how do you feel after the partial seizure....do you have to avoid anything eg certain foods or atmospheric situations....is your body physically weakened by these episodes? Love your updates
@ProfRScolyerMIA @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA Thank you for your updates @ProfRScolyerMIA . I marvel at the way you are balancing being a patient and a dedicated researcher. Wishing you and your family my very best wishes for your ultimate recovery.
@ProfRScolyerMIA @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA ❤️❤️❤️❤️🙏🙏🙏🙏🤗🤗🤗🤗
@ProfRScolyerMIA @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA Thank you RS. Extraordinarily insightful info into this journey of yours and your Team that you readily share…and, always cheering for you mate.
@ProfRScolyerMIA @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA Thanks for the update Prof. You’re an absolute inspiration. Keep up the great work and enjoy a wonderful Christmas.
@ProfRScolyerMIA @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA Very interesting update . Stay well and enjoy your Xmas .
@ProfRScolyerMIA @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA Good luck prof ⭐️⭐️
@ProfRScolyerMIA @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA My brother presented with a siezure and the intermittently had more. Like you said they were mostly partial ones after the initial one - still frightening and upsetting for him xxx
@ProfRScolyerMIA @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA Best wishes to you, your family and the medical team. Thank you for the updates, a courageous stance and an inspiration to sufferers of all forms of cancer. ❤️ 💙 💜
@ProfRScolyerMIA @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA Thank you so much for the update. You’re looking well and I hope the seizures cease and you can continue improving 🙏🏻
@ProfRScolyerMIA @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA My best wishes to you. Seizures are alarming and drain you of energy for days. 🥰
@ProfRScolyerMIA @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA Navigating a groundbreaking treatment with openness and courage is truly commendable and inspiring!! Wishing you a restorative festive season surrounded by the comfort of family and friends !!
@ProfRScolyerMIA @annbag2 @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA Thank you for sharing again. Keep 🛗 Best wishes 🎄🌟🎄
@ProfRScolyerMIA @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA Helen Wheeler was my husband’s (Mark) doctor. She’s simply the best. You’re in very good hands. Wishing you a lovely Christmas with your family. My Mark did 12 years with BC. He donated his brain for research. Keep doing what you’re doing. Sending blessings your way.
@ProfRScolyerMIA @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA Dear Professor! Wish you all the best with complete recovery 👍👌❤️
@ProfRScolyerMIA @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA You are quite simply a courageous, compassionate and wonderful man. I don't know you but I am incredibly honoured to listen to your story.
@ProfRScolyerMIA @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA 🤗🤗🫶🏾
@ProfRScolyerMIA @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA All the best brightest wishes to you, Richard. Hope you get on top of those seizures 🙏💚
@ProfRScolyerMIA @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA 🙏🏻🙏🏻🙏🏻💖💙
@ProfRScolyerMIA @MelanomaAus @Sydney_Uni @syd_health @SydneyResearch @SydneyCatalyst @CPC_usyd @PathologyRCPA @AAHMS_health @cancerNSW @ProfGLongMIA Good on you Prof. You sound like things are going well. Best wishes for continued improvement and good health.
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Speaking from experience there is no awareness of anything being said to a person during a Tonic-clonic (grand mal) seizure. It’s not me in the video but this is what my life has been for over 5 years now. This year on Mother’s Day all 4 of my kids watched this happen to me in our kitchen. It was the first time they’d all seen my grand mal seizures. Up until the past few months they’ve usually occurred in my sleep. My children haven’t looked at me the same since. My seizures have become alarmingly frequent since the new year. An average of 2 or 3 grand mal seizures per week. So I recently took a long break from X to see if removing the stress would help. I also started a new medication. But as of last night it’s clear that neither will be an instant fix. I’m posting this to ask that you please pray for my family.🙏❤️🔥
sᥕᥱᥱ𝗍 𝗍һіᥒg❤️🔥(𝙰𝚜𝚒𝚊)
1,194,173 просмотров • 4 месяцев назад
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