Unmoored

edited November 2019 in Recurrence

Hi all


I had got just past the 2 year mark when my Ca125 went up. On a PET scan there's only a small spot between my liver and kidney and my gyny-onc and oncologist have gone to ground to discuss what the plan is. I had finally started to feel like I could relax and live again. I feel angry and frustrated and unsure how to live in this "unmoored" place.


Any ideas?


kath


 

Comments

  • Hi Kath,


    Sometimes a recurrence can be more frightening than the initial diagnosis because you know what you have to go through physically and emotionally.  I've had 4 recurrences and I'm at the stage now that I accept that this is my life and I need to do what I'm told to stay alive.  What I find frustrating is the interruption to my life.  I can't plan anything long term in case I get sick again so now my motto is if it makes you happy, do it.


    Nikki

  • many thanks nikki


    wow 4x is tough stuff. I like your motto a lot


    thank you

  • "If it makes you happy, do it."  I LOVE this Nikki!


    Karen


     

  • Unfortunately this has led to and addiction to shoes ?, but I don't care, I love them!

  • Hello Recurrence Ladies,


    My oncologist informed me this past weekend, I am platinum resistant.   I have never been out of treatment since my initial diagnosis 10/13/2016.  I have been in the hospital every month at least one weekend if not three.  So I have cancer that never went away.  I am about to try avastin to keep from being in the hospital on a 5 day chemo run - 48 hour solid, 1-2 hours a day on days 3,4,5.  I have my first ever scan of my liver, kidneys, bowels, stomach and lungs.  They have never done this kind of 3 part scan before the one this Saturday.  I feel good so why sweat it.  I will not be making a reservation to crew on tall ships this summer from Denmark to England.  Write.  I love connecting with you.  Sandra

  • I’m platinum resistant too!!!  So frustrating when that is the frontline treatment.  I know how you feel about the constant hospital visits.  I’m always extatic when I manage to go somewhere without having to see someone with a medical degree.  My partner and our 2 boys and I just got home today after a week at the beach and my doctor was lovely enough to give me the week off so that made our holiday even better.


    ‘Good luck with the scan and new treatment and let us know how it goes.


    Nikki

  • Hi ya Nikki,


    I just love you - your attitude rocks.  I was sad when I read you have had 3 surgeries and then when Helen said she has had 2.  My second opinion this summer said he would not do surgery again.  Have never really talked about it with Chen.  He always wants to be hopeful and positive so I tend not to believe what he says and just do the day at a time thing.  He told me ten years after surgery, second opinion guy said no way 10 years unless you get on olaparib...chen never mentioned oalaprib or the BRCA test when second opinion doc said get the BRCA test.  I should have had it when my sister found out she is BRCA 1 and 2 positive.  Last Oct b4 scan results, Chen said "oh 2 to 3 years" disease progression free"....Oct scan came back "several tiny new nodules" ....then he gave me crazy stats for avastin that i have not seen as far as cost/benefit goes...but I love Dr. Chen and know he has my BEST interests at heart - I have never doubted this even though we have the language thing all of the time - for example he called my stomach a tumor - Dr. Chen my stomach is my stomach it is not a tumor.  That thing you took out of me last FEB is a tumor.  Nothing in my body right now qualifies for the vocab word TUMOR.  ha ha.  I have seeds and nodules in my stomach but NO TUMOR.  And recurrent is a bogus word.  I have never stopped being current - a 2 week window to me does not mean to me at least it has ever stopped.  So to say I am recurrent, refractory is NUTS.   But I am not writing scholarly articles for other people who engage in DOCTOR SPEAK.  ha ha.  To me I either feel good, am having fun, or I am not.  Like I felt on October 13 2016 when I went to the ER with a growing alien in my stomach, worms under my skin and increasing PAIN - that was a GIANT am not.  ha ha.  I am glad you went to the beach.  That's the name of the game Nikki - and your kids, and holding hands, and your laughing photo - spa time with medical personnel is getting OLD....the cancer party is a little not fun....I have been in the hospital EVERY WEEKEND FOR TREATMENT for awhile now.  I like my nurses and doc but this is a little too cozy.  If I get avastin it will buy me time AWAY FROM Chen's new iney meany miney moe of 5 day in hospital chemo - 2 days of 48 hour drips and 3 days of 1-2 hours - UGH - that was totally worth swallowing my pride to pay for 4 injections.  4 will do something.  OK enough.  Love ya...Sandra

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