I am beginning to think that being a patient means you need the patience of a saint!!
Went to clinic today as planned, agreed to start the ICON 9 trial. Made an appointment for Thursday to have screening done.
Sadly my CT scan results were not back to review ( new they wouldn't be, but was refused a request to move my appointment) My CA125 has only reduced a tiny amount to 133 so I am anxious to start a parb asap, however because my haemoglobin is very low and also my white blood cells, the team have cancelled my screening and I have to go back in a weeks time as at the moment I don't qualify for the trial.......on off on off! its like doing the verbal hokey cokey. 😡 Hope you are all doing better than me!!
That’s so frustrating, Lynn. But your bloods will come back up soon (any chance of a transfusion?). I think you have 8 weeks to start the PARP but I know how you feel about not giving the evil cancer any extra time to do its thing! Hang in there.
They want to check next monday to see if my bloods come back up on their own. I will only have 3.5 weeks left from then on, so I am guessing I may not qualify in the time frame. exasperating!!
Keep going Lynn, I am always impressed by your strength and compassion to others even when you are feeling unwell. The waiting and uncertainty is a real pain but we are all routing for you and hope you get started soon. Love and hugs Pat (short friend) xx
Geez Lyn, not good for your mental health all this messing about. I know it's nobody's fault but still not good! Hopefully it will get sorted soon! Delia is correct btw, you have to start within 8 weeks so hopefully you get this resolved sooner than later!
Thank you Kathy - some good news this afternoon, my CT scan shows no evidence of disease, so even though the cancer is hiding somewhere, nothing new at the moment - phew!
That’s good news about your scan results. But you’re right about needing patience as a patient. It’s all about waiting round for hours or days. I hope you can find something totally distracting and absorbing to help in the meantime. Xxx
Lyn I'm so very sorry. The last thing that you need at the moment is a round of the hokey pokey. More of the can can and not the can not. Sending you lots of positive vibes and keeping everything crossed that things look better for your appointment this week xxxx
The "can can".........I like that! 🤣 Thank you for making me smile x
So sorry Lyn. Hopefully the week does it but if not, there are transfusions or medications to help--maybe they just need a reminder. You are helping them being in a trial so let them help you be in it I say! Anyway--the waiting is hard but the bloods do usually go back towards normal over time. Try not to think about it (that made me laugh). How about try not to think about it too much till it gets closer to rechecking your bloods. (Happy to read about the scan though...that is good news even though you say they are lurking in there somewhere). oxoxxo Judy
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