You want to what...?der

FormerMember
FormerMember
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It's about a month ago. I'm heading in for what I think to be the last meeting. All tests are coming back great, numbers are on point, it appears my body is back to doing what it's supposed to do! Delusions of freedom and getting my life back, fill my head like a child that is still falsely believing in a mystical fat guy that comes down the chimney! (Which is pretty fucked if you consider no houses have chimneys any more) FINALLY, get this damn port thing out of me! Can't wait to itch my tit for the first time in years...GLORIOUS it shall be!!

SCREECHING HALT!!

"It appears you have a mutated gene in your DNA which is the cause of your cancer. We believe a Stem Cell Transplant may remedy that for you."

This is where I glaze over like freshly made donut. You see. I am a musician. A drummer to be more precise but a musician none the less. Anything you don't have to
blow in" to play, I can play. The importance of the drummer title is because I'm a chromosome away from being a caveman. So my question is can someone explain, or point me to where I can learn, exactly what's going to potentially happen, odds of success, odds of survival without procedure, etc...? I had three different people explain to me what we are doing now since I went from feeling great to back to shit in a month's time and they're excited about it!?! Needless to say, none of the exp[lanations quite "stuck".

I'm so thankful for finding this site and have no idea why I took so long to look! Throughout this (and other) life's journeys, I ONLY find help through others going through it. More so than those who have read about it. I look forward to a future relationship with yall but ask for patience and forgiveness ahead of time. I am what they call "Brash" this the nickname cus my boss once said I was "abrasive" lol! I lack that filter that tells you NOT to say some things (like swearing) but know in your heart that I mean NO offense on purpose. Humor is my defense mechanism which is not always the best way to proceed from what I'm told. I say, fuck it! Slight smile

  • Due to you talking about health insurance I too guess you’re not in the UK? 

    I agree with Mike that the psychological side of all this is a tough one; daughter had some counselling from one of the onco-psychologists at early stages in her treatment, sadly the one she really ‘clicked’ with left. However when she needed it again she had a couple of staff who didn’t work out, but finally one who was really great who got her in the end to see that she had survivors guilt and encouraged her to deal with that in several ways; she even has a piano album called ‘Lost’ composed as a result, 4 separate pieces she put together.

    Hugs xxx

    Moomy

  • FormerMember
    FormerMember in reply to Thehighlander

    Assumptions correct. I am from the US, Pennsylvania to be exact. Is it that obvious? lol! Guess my asshole mentality shines through :) But that's part of me I don't apologize for because technically, that's part of being an asshole HAHA!

    I TOTALLY get the importance of mental conditioning and the correlation between it and a successful recovery. Without going into detail, laying all my shit out on the table, and boring all who see. Since we're all adults here that have obviously been through a metric fuck ton of some seriously heavy shit. I, with great conviction and faith, undeservingly ask that you trust me when I say "I'm Good". 

    You see I am VERY jaded by the Medical field for reasons I also won't bother to bore you with. I trust doctors about as far as I can throw em and I could probably throw a few of them pretty far. :) And that was BEFORE they played hot potato for 2 1/2 years, throwing me from "Specialist to Specialist". When I was 13 my Mother threw her back out Christmas morning. They botched an operation on her discs in her back and she was handicapped and in pain the rest of her life. She later acquired a number of other illnesses' throughout her life. So I got to know a number of Doctors in a number of fields in numerous states. I DO trust my doctor 110% in all health, physical and medical capacities. I also have shown full commitment by never missing an appointment, quit smoking everything and no matter how asinine a request seems to me, openly did it with a smile. (Well, maybe a grin.) The psychologist on the other hand...

    IF you wanna know WHO I am. Ask for character references like the court system or even the nursing staff on the 7th floor I charmed into singing Christmas carols on Christmas which I spent in the hospital being pumped full of some insanely priced chemical that i "HAVE to have or I will DIE". Talk to my children/grandchild or countless strangers I've talked "off the ledge" through various forms of social media. I have touched more lives than I know through nothing of my own doing but only by the Grace of God. You will NOT learn ANYTHING by comparing me to any statistics, excerpts form college books, or standardized psyche personality tests. I don't fit in that little box and that confuses them. To call me "Old Fashioned" would be a considerable improvement to some things I've been called. But what happened to the days of you tell me my options, I choose one and you fucking DO IT!?! I admittedly don't do well with being told what to do. My Wife say's that because "I'm a big baby". I'm not saying she's wrong but regardless of that fact. I ESPECIALLY don't do well with having my life dangled in front of me like a carrot. The "Do what I want or I'm taking my ball and going home" form of bedside manner. 

    The option is NOT off the table apparently. Just not at this time. Which is a "No Shit" because I still have 2 sessions of hi-dek. Although I made sure exactly what they were saying and it sounded exactly like "You are no longer a candidate..:" as in AT ALL. But it has been an uphill battle with these clowns and I'm STRONGLY considering diet change, exercise, herbal meds, and the Grace of God and see how it plays out. 

    I don't know... Maybe it IS just me! Sure as Hell wouldn;t be the first (or last) time.

  • FormerMember
    FormerMember in reply to moomy

    I'm so glad she got it sorted out and they were able to help her do so. I can relate to the "Survivors Guilt". I was wrongfully imprisoned for a fatal accident involving the deaths of two very close friends for a number of years in State Prison. Luckily my case was reviewed and thrown out by the higher courts so I didn't have to do the 12 YEARS I was sentenced to. Talk about kicking a man when he's down! "You just lost two friends due to no fault of your own. Now you're going to jail!!" One of the MANY life-changing situations I have coped with. I would love to hear the piano piece if that's possible! Is it available to the public? I have always admired keyboardists/pianists. I play a number of instruments professionally and consider myself quite coordinated. But how they do totally different things with their hands totally blows my mind! LOL!

  • Hi again, life is truly full of ups, downs and dead ends with some experiencing more than their fair share over others.

    I am not going to go into my ‘interesting’ life but I suppose it made me who I am today and most likely the lessons learned from the past helped me navigate the recent health challenges.

    Good that the SCT option is not off the table and let’s look for everything to come together to move this forward in a positive way.

    In the mean time do look after yourself and as always the Community is around for a safe place to unpack the ‘stuff’ of life.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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