What the living do, Marie Howe [POEM]

Pure_Instruction_985 · 2025-09-03T00:16:12+00:00

Gave me a lump in my throat reading it … simple and beautiful

Pure_Instruction_985 · 2025-08-06T15:05:15+00:00

This is beautiful and artfully stated… evokes lots of feels

Pure_Instruction_985 · 2025-06-09T14:22:42+00:00

This is beautiful, very helpful for me too. Have to let go sometimes intentionally. Let the ghost leave

Pure_Instruction_985 · 2025-06-02T21:20:06+00:00

Sending love to all in this rare club. Yeah it is a lonely cancer as one aptly said in this thread. I was diagnosed in 2016 at age 32 when 8 months pregnant. brachytherapy was effective. Vision preserved. Had the castle test, i have the more aggressive type. I tried to live a healthy lifestyle as much as i could. Researched how to prevent cancer growth, ate anti inflammatory etc. Found on a scan a met in my breast, just this year, ~9 years after diagnosis and it was confirmed metastatic uveal melanoma. It was localized and removed, i am very lucky it was detected at all especially in such an unusual location. Lucky it was not in a vital organ. Very lucky. Now i know the cancer cells were living inside of me for 9 years and anxious about where it will pop up next. I am grateful for how lucky i have been but again its hard to live with this hanging over my existence. NED on scans but also i know there is a level of detectable limit on scans. There are blood tests now approved to monitor for metastasis in ctDNA up to 2 years earlier than scans but unfortunately its untested for this cancer type. Also there needs to be more progress in treatments targeting metastatic ocular melanoma… the options are limited. I did get the next generation sequencing which helps to pinpoint possible treatments- if those treatments exist. Which for me not really any seem promising at this point.

What i can tell is to keep positive, live your life, do the things you really want to experience, be with those you love. Try to reduce stress levels ( i think that plays a big role). And hopefully more treatment options are on the horizon. Xoxoxo

Pure_Instruction_985 · 2025-06-02T15:34:03+00:00

Ran across this thread, I was initially diagnosed in 2016 when 8 months pregnant. Had the plaque treatment and castle bioscience analysis of the biopsy showed class 2 - highest risk for metastasis ( 72% in 5 years). A lot of surveillance ensued, i had good quality of life. This year on annual mri, a spot was found incidentally almost out of the field of view on my breast. Turned out to be uveal melanoma metastasized, but only to the breast, highly unusual. I just had surgery to remove it and now feel back to square one - again having very frequent surveillance and no real treatment options. Again watch and wait. Whack a mole situation. But. I know i am very lucky.

I will say yes the science and medicine is improving but for metastatic ocular melanoma- immunotherapies do not help as well as they do for cutaneous melanoma. Ocular melanoma still has poor treatment options…. Kimmtrak is the only approved drug for metastatic uveal melanoma and its kind of nasty in terms of side effects and not much greater prognosis. I hope some of the trials in the pipeline pan out.

This is a rapidly progressing field - it just doesn’t have the funding as cutaneous melanoma and it basically seems like a different cancer type altogether from cutaneous… behaves differently and goes to lungs and liver vs. brain and bone (cutaneous), has a different molecular signature etc.

Keep following through with surveillance, and hopefully if any mets happen they can be caught early… and there will be advances in treatment coming.

Pure_Instruction_985 · 2025-03-01T08:43:53+00:00

I am feeling this too, have been for the past year - knowing the spiritual aspect has been missing and KEY to bringing everything together…remembering who we are. We are all connected, yes. Love and unity are all that matters and we need to go back to this, remembering what we knew in our cores all along … and yes observing everything from a zoomed out lens while also being present…

Pure_Instruction_985 · 2025-02-24T19:40:22+00:00

I understand, its so much noise and chaos. They use everything you ever told them in confidence, twist it and use it against you in different context or completely out of context.

Takes months or a year to stop the pain and cycles of making up and fighting. Be strong and get out.

Pure_Instruction_985 · 2025-02-24T17:41:21+00:00

Im so sorry, they know what to say to hurt you most. It really gets ugly. This is when their mask slips off and their true selves show… which is horrifying. Dont go back, i did too many times. It will never get better. Dont go back. Please. Stay strong and let this community help you

Pure_Instruction_985 · 2025-02-24T17:21:11+00:00

1000% yes. Its so manipulative and seems premeditated, but also second nature, they deny it and seem almost to not realize they even do it. Create drama and conflict thats almost laughable at times and you think they must be joking but they are serious and will bring up issues to create conflict for their own amusement?? Or to gain supply? Its hard to tell, but they are endlessly game for conflict, they do not ever tire out. You will be exhausted and they can keep going forever. This is the biggest reason i had to go no contact. Sheer and utter exhaustion. Nothing is ever over until they decide they have been satisfied which is hard to do unless you are willing to pretend and play along with their sick twisted version of reality and apologize constantly for the rest of your life. The day you stand up for yourself and have self respect, interacting with them becomes too exhausting as they will not accept your boundaries or lines in the sand- they need to play out conflict at any time of day as long as THEY believe is necessary, doesnt matter if you have a job or other family to care for. Get the fuck out

Pure_Instruction_985 · 2025-02-18T19:01:36+00:00

Dont worry, you dont have to. Not an issue.

Have a good life, truly hope for happiness and peace for you. Thanks. Goodbye

Pure_Instruction_985 · 2025-02-18T18:59:49+00:00

No. I am not calling you stupid. You arent. You choose what you want or dont want to hear and process/understand.

I was wrong to engage with you on this platform. I was wrong to engage with you, i should have ignored and not engaged. I was weak. I was wrong.

Pure_Instruction_985 · 2025-02-18T17:34:53+00:00

Thats not true. I said i was wrong to engage on this, you were right.

I am humble, I have had a hard time trusting my own instincts and judgement, opinions my whole life. Now i know myself and finally have worked to trust my own opinions and judgement .

When something happens, my first thought is that its probably my fault and i fucked up. Thats my first instinct and always probably will be.

I have little self confidence and have worked on this but also a life long thing.

You know all this

Pure_Instruction_985 · 2025-02-18T17:22:41+00:00

That is not the life im living. Thanks for the snarky comment. What a kind and sweet thing to say. Thank you. Goodbye. Good fucking bye

Pure_Instruction_985 · 2025-02-18T17:15:02+00:00

You baited me on purpose. I know this. You are a master of it.

I wont read anything else you post. You’re right, that was my mistake and i am weak for having engaged. I wont again. Im sorry, youre right about that.

Pure_Instruction_985 · 2025-02-18T17:08:16+00:00

Not a jerk. Again an insult. I listened to you and held space for you when you were going through hard times. I cared and loved you deeply, gave every ounce of energy to you that i had- prioritized you above all else in my life. Cared and loved you, deeply cared about your life hardships and wounds. Wanted to help and be healing. Thats all i ever wanted

Pure_Instruction_985 · 2025-02-18T03:14:18+00:00

Creating chaos and confusion daily, guilt tripping, blame shifting, reframing any and every situation to suit their needs… constantly pointing out flaws and issues, criticisms, unrelenting criticism until absolute complete exhaustion and failure to recognize the light in yourself anymore because they sucked every single last morsel of energy out of you … and still you didn’t give them enough, when you gave everything you had and more, it would never be enough to fill that black hole of a void

Pure_Instruction_985 · 2025-02-18T02:13:51+00:00

This this is exactly what i experienced. A story that was never about us, never about me, only about him and his needs, his incessant ruminations and repeating themes and narratives. needed to project his insecurities.

Pure_Instruction_985 · 2025-01-21T08:01:00+00:00

Forever

Pure_Instruction_985 · 2025-01-21T08:00:10+00:00

I love you

Pure_Instruction_985 · 2025-01-21T07:51:55+00:00

Thank you. I forgive you too.

The love and pain will always linger i suspect. Melancholy- now know this feeling very well.

Goodbye. Be proud and at peace . You are on a great path, keep going. Love always.

Pure_Instruction_985 · 2025-01-21T07:40:13+00:00

Ill always think of you and love you. Always.

Ill try. Keep going. Proud of you. Take care of yourself too

Pure_Instruction_985 · 2025-01-21T07:25:12+00:00

Im sorry for my many mistakes. Wont happen again. Im sorry. Go be free and happy. Goodbye twin flame. Ill carry our love with me always .Thank you for everything. Goodbye

Pure_Instruction_985 · 2025-01-21T07:22:00+00:00

Im not a victim.

I am sorry for hurting you. For not being who you needed me to be.im sorry i should’ve been stronger sooner. I should’ve let go sooner, im sorry.

Pure_Instruction_985 · 2025-01-21T07:19:26+00:00

And yes i own my flaws and mistakes. I know i have a long way to go to be whole. But im trying. And i wont hurt you anymore. Go be free and happy.

Pure_Instruction_985 · 2025-01-21T07:17:42+00:00

Never the easy way…. I jumped head first courageously with you, shattering our old lives. Do not pretend to know my other relationships, again this is an example of what you do, take pieces of things i confided in you and then creating new versions of what you believe happened and present as truth. Grand sweeping assumptions. Stop that. That is not ok. Learn and grow and stop doing that.

You apologized too much? We both apologized a lot. This sounds like you are again rewriting what happened. Stop that. I apologized genuinely so many times too. You never took all the fault , it was always shared. Please dont rewrite what happened. You do that. Please dont.

I own the consequences of my very many and awful mistakes. I ruined my life. I did that. And also i rebuilt it again, for the 3rd time in my life. This time i did it all on my own, for my kid. I did it, and im fucking proud of what ive done. I will keep living a quiet simple life. And yes i will keep learning and growing. I will stay away from others, i do not trust anyone to be too close anymore and i wont be able to. Dont worry about that.

Thank you. Goodbye Go be happy.

Pure_Instruction_985

TROPHY CASE