Stumbling through the minefield of clear cell ovarian cancer

Joined June 2020
67 Photos and videos
Rotten Ovaries💙 retweeted
Joan update. So I had a conversation a while ago with the pastor of my church. There is something we want to do to help Joan but we need a little help. As you know initially the church had a collection and they took up a little over $400 and then last weekend the students went around gathering belongings to set up Joan and her new home. They were able to get furniture and dishes and clothing. We would like to help Joan see a dentist which obviously she has not for years. I agree with the pastor that if we continue to ask the parishioners for help for Joan that could eventually become a little bit of a resentment and at this point it is all joy and I want to keep it that way. I told my pastor I know people let me see what I can do. That pastor has a few personal friends who have put in money and I am trying to raise 150. What we have and if we can get this will allow her to have an initial screening, x-rays, a cleaning and soon thereafter hopefully filings. If you would like to help please send me a private message and I can tell you how. I do not want to put my phone number or email here publicly. There are presently two options which would be to send through zelle or PayPal. And if you can't do anything that is absolutely fine because you have already helped so much because your comments on that initial post about Joan skyrocketed an awareness about her and because of what you did we've been able to get her into a home. My pastor was so touched by every one of you that said her name and if you don't know what I'm talking about then scroll back a couple of weeks LOL.
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Rotten Ovaries💙 retweeted
A new drug that extends survival for women with hard-to-treat ovarian cancer is now available on the NHS. It was tested by @NHSBartsHealth at St Bartholomew's Hospital as part of a major global clinical trial in 8 NHS hospitals in England Read more: bit.ly/4xvy4b4
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Rotten Ovaries💙 retweeted
When things go wrong in the NHS (as they do each year and get progressively worse): Department of Health - ‘it’s the greedy doctors. GPs not doing enough. Resident doctors trying to hold the public to ransom with strikes’ NHS E - ‘we need more money, our hands are tied and we need to restructure. This time we’re going to move this chair on the titanic…’ (under their breath - we seem to be running out of chairs to rearrange - so we’ll just merge with DoH next year and get rid of the illusion that we’re arms length) RCEM - ‘we need more beds, that’s the only thing stopping our hardworking practitioners in ED’ RCGP - ‘there’s enough work to go around, let’s pump in more non doctor roles, that’ll solve the problem’ RCP - ‘the NHS is burning down? Sorry we’ve just been focused on our membership growth with PAs and international members, give us a little more time to come back to you on the workforce plan’ GMC - ‘20k doctors left the NHS last year? Don’t worry we’ve got 50k IMGs doing PLAB, you’ll be able to hire more with substandard contracts in LED roles and force the pay down as we know we’re getting rid of these pesky doctors and replacing them with ACPs and PAs - but we’ll place them on the GMC register to make sure we still get our cut’ Patient safety group - ‘don’t worry nothing to see here, everyone is working hard to deliver safe care, we only advocate for stuff that comes out as a scandal 20 years later, till then we need funding from DoH’ CQC - ‘don’t look at us, we hire toxic Ex NHS execs intentionally so they can help other organisations bury the bodies properly’ Press and Media - ‘I mean we’re owned by billionaires, we need to have a good relationship with DoH and they feed us awesome stories- mainly about doctor failures to help sell our papers’
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Rotten Ovaries💙 retweeted
A very strong intense piece here. I'm requesting you to give it a consideration as a pivotal moment in my life and others. Two years ago today on May 3rd, 2024 my life came to a screeching halt tossing me to complete powerlessness with every subsequent move dependent on everyone else around me. I could not move. I only observed. All strangers. No one I had ever seen before and many who I would only hear their voices but never see their faces. “Someone call for 911 fast." “Is he alive? Can he move? What about the other car?" “Oh my God I can't look. I don't think we should move him." “Make sure there is no gasoline leaking. See if you can reach for his wallet to find someone that we can call or check his phone in his contacts." “He missed hitting me by inches. I grabbed my daughter. Poor little girl is crying her heart out.” There was nervous energy and a frenetic excitement with everyone's adrenaline pumping. By-standers were redirecting the traffic. Every car passing by stopped to assess the horror that they would run home and say, “Oh my God you should have seen the accident on M-28. That guy is lucky if he makes it.” And I'm that guy. I could do nothing. I remember blood going down my face into my mouth as my teeth were crushed and I remember my foot had its own voice and it was screaming in agony because it was broken. My right arm was burned from the chemicals that erupted with the deployment of the airbags. Within minutes I was hoisted onto a stretcher and taken to the University of Michigan hospital where I was immediately thrust into an operating room for emergency surgery to have my spleen removed. A nurse had the task to contact my emergency contact Russell Secor in Vermont who immediately then within 20 minutes was on his way to Michigan. Upon his arrival I was resting in a room for hours after the surgery and we both wept upon seeing each other. Two years ago today later in the afternoon Russell came on to this account for the first time to introduce himself as my best friend to inform you I will not be on here for a while and that prayers were needed. I have written many times of my gratitude to Russell and to all of you for embracing him and as you know the rest is history. He eventually started adding humor with his updates as he knew I wanted that. You loved his stories. And you became his friend and he adores all of you. Today I think about the person that called 911 and how I didn't get to say thank you. I didn't get to thank the woman who a few months later I recalled took her hands and brushed glass away from my nose and out of my hair. I was not able to thank the people who checked my car to see if it was about to blow up because of potential gas leaking. I did not get to thank the man who found my phone underneath my car seat to give to the paramedics who would then give it to the nurse who would then call Russell who would then say hello to all of you. It is uncomfortable 2 years later living with an appreciation for people to whom I do not know lacking the knowledge to reach them to offer my grateful sentiments. I can only trust God blessing them. The weeks that followed were tormented with therapeutic healing requiring patience and massive rehabilitation. The unexpected was to come and it remains to this day which is undoubtedly the goodness which are all these relationships that have formed with all of you knowing Russell and Brenda. Remember for those of us who are faithful, good always comes out of that which is ugly. If you have ever performed an act of kindness for someone who is unable to thank you at the time I would like to believe they are grateful to you and we just have to live trusting that, yet I don't believe in these situations that anyone desires being thanked as much as a desire for a successful outcome for the other person whether stranger or acquaintance for good friend.
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Real change starts with real experiences. Have you been affected by a rare and less common cancer (all cancers except breast, bowel, lung, or prostate) either as a patient or a carer? Please take our anonymous online survey to share your experience: bit.ly/43pRy33
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This is beautifully written, it sums up life after cancer, survivorship, the adjustments we have to make. #Cancer #Survivorship
Totally forgot to share my latest blog post about “aging out” of the #AYAcancer. #NationalCancerSurvivorsDay #LifeOnTheCancerTrain #blogger warriormegsie.com/2026/06/07…
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The power we have within us to lift others:
Please I encourage you, my friends, to read this and to please consider reposting. Cindy. I just said your name. I wonder if that brought forth a particular thought or feeling. Margaret, Rosemary, Shirley my Canadian friends I just clearly enunciated your names. Emmy you have been called instead of someone addressing you as ma'am. Noeleen, John, Sue, Sonja, I am addressing you. Mozesella, Anne, Kristen, Colleen, Jeri, you are called. Hello Laura. Good day Barbara, Bobbi, Nancy, Gammie. Happy Saturday Janet, Maryann, Joan, Serena, Jean. Hi Sarah in San Francisco. Tina, Rose, Rosalind, I'm sending you good thoughts. The same good wishes for you Gina, Trisha, Terri. Stephanie, Pam, whatever your plans are for the weekend I hope you find enjoyment. There are moments in our lives that startle us. They stop us. They freeze us for a moment emotionally, mentally and physically. These are the moments if you are like me where you paused and you think did this just happen? And it takes days for it to level out. Because now you have an awareness of something that previously lacked familiarity. Recently when I was leaving the physical therapy center I was stopping at Walgreens and I noticed a woman in the parking lot. She has been there quite a few times. Always in a beautiful blue dress with flip flop sandals on her feet and her hair pulled back in a bun. Probably around 50 years old. I have never seen her approach anybody. She just stands in the parking lot and not even near the door. Curiosity led me to ask the cashier if she knew about this woman and I found out the woman is homeless. A homeless woman with no sign asking for help or even approaching others. The cashier said all she knows is she likes Sprite. It was warm out so I bought the woman two cans of Sprite. I took them to her and I said, “Hi there I understand that you enjoy sprite.” She was very pleased and I asked her how she was doing and her words were, “I'm between moments.” She captivated me with those words. We spoke for a couple of minutes and then to make it more personal I said, “May I ask your name?” She informed me she is Joan and I said, “It's good to meet you Joan.” And with that she placed her hands over her eyes and lowered her hand and softly began to cry. I watched. And then her tears became heavy and forceful leading to sobbing. I gently said, “Joan, can you tell me what's happening right now?” And then it came. The startling moment that I cannot shake. “No one has called me by my name for years."
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Do you remember when you joined X? I do! This is where I met the best, most supportive people on Twitter, the cancer community here has been a lifesaver for me. Thank you #Cancer #OvarianCancer #Chemo #Survivorship #MyXAnniversary
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Rotten Ovaries💙 retweeted
Cancers infancy. October 20, 2020 I became a cancer infant. I was born into a world I did not know. Baptized if you will, as Brain Cancer. Like an infant I would have to hear words repeated to me over and over before I could understand them and even possibly contemplate naming them. Words such as brain cancer surgical precautions, aftercare, rehabilitation, chemotherapies affect upon insulin resistance, cancer margins, tumor markers, radiation fatigue. Like an infant I began to amass an understanding because of the repetition unending around me…words said and taught by others to me. Shortly like an infant I had to begin to take steps. I had to acquire this life like an infant by observing those who have taken these steps as demonstrations for me. Those who go to the registration desks at hospitals signing in for an overnight stay for a chemotherapy drip. I had to learn to take the steps of those who walk to the hospital Monday through Friday 5 days a week for 7 weeks for radiation treatments. I had to observe others and how they walk with a balance without falling down into defeat. As an infant I eventually by way of passage through patient development became an adolescent. I suddenly understood how this works and my participation in it to make it effective for myself. I moved from cancer adolescence to cancer adulthood. Now I'm an expert. Not that I am elevated above anyone else. I have simply advanced from infancy to adolescence to this present stage in my life. Every person who navigates cancer is an expert. I have to admit I long for the days to be an infant once again where I knew nothing. However as a mature adult I have learned you can only do your best if you take the steps you learned as an infant. Only your best. There are those experts who have never had this disease and we compensate them financially but it's always up to each of us truth bearing experts to take the steps. Our best steps. #cancer
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Rotten Ovaries💙 retweeted
NJ cancer survivors and caregivers I invite you to respond to this survey. Survey is now available in spanish!
Help NJ support cancer survivors and caregivers by completing our Cancer Survivorship Survey. You can shape the future by letting us know what information, resources, and support matter most to you. Answers are anonymous. bit.ly/NJCancerSurvivorshipS… #HealthierNJ
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Rotten Ovaries💙 retweeted
This is so important. If you haven’t taken the medication, don’t presume to know more than the facts. #bcsm
So much this! @oncology_bg expresses what we patients have been saying for years - don’t trivialize AEs, don’t use adjectives like “tolerable” unless you’ve taken the drug, just give us the facts.
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Rotten Ovaries💙 retweeted
A cancer-killing virus has stopped pancreatic tumours from growing and spreading in three people in an initial safety trial, raising hopes that it may help to beat the deadly condition newscientist.com/article/252…
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Very well written, as always. For all those who've been told that they are brave when they are trying to stay alive, showing up. #Cancer
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Rotten Ovaries💙 retweeted
Palliative care is often misunderstood as being synonymous with end-of-life care, but it is actually a specialized layer of support designed to improve quality of life at any stage of a serious illness. #PalliativeCare
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Rotten Ovaries💙 retweeted
We teamed up with @ColostomyUK to update our guide on #ovariancancer and #stomas. ✅ Specialist psychological advice from Dr Zainab Noor ✅ Quotes, tips and experiences from those living with a stoma ✅ Up to date clinical information Get a copy 👉 bit.ly/4wWbpVr
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Rotten Ovaries💙 retweeted
An unpleasant reality where present and future victims including recent and past women and men are perhaps under the impression it is best never to come forward to report sexual assault. Why is that? Look at our current climate. There is a disbelief regarding the Epstein victims. And now E Jean Carroll is in court which is nothing but a retribution punishment for winning liability in $90 million dollars as two juries found the president guilty of violating her. Our current culture is lending an unnecessary and unwarranted suspicion toward innocent victims. One out of three women are sexually violated and this is what I want to say to you. If you choose not to come forward to the police because of a fear of not being trusted when a woman already feels her value was taken in the incident I understand your hesitation. However do not keep this to yourself. That would be suppression which is going to make you more sick than you are from the tragic occurrence. It will manifest itself into long term raging anger and you will be far from a necessary recovery. I am offering some screenshots of a couple of numbers for who you could reach out to. You don't have to tell everybody, whatever you do is your decision. Remember you were violated but you still have your own power. You have your own womanhood and for your men who are violated you still have your manhood. Please do not allow what is happening at this very pessimistic time that we find ourselves living in to deter you from your own righteousness with vindicating Justice.
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Another 10km done! I've actually done it 🎉 100km completed. I set myself the challenge to complete 100km in May, and I've achieved it 😃 #BigC100kInMay #Cancer #Survivorship
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Another 10km done!! 90km done, just 10km more to go 💪 #BigC100kInMay #Cancer #Survivorship
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I've now done another 10km. 80km down, 20km to go. #BigC100kInMay
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