I have just finished my 4th cycle of FCR and it’s now time do they bale out or keep on going with more treatment. even though I have responded to the treatment very well
Leading up to the start off the treatment I was all anxious and basically scared.
Then once treatment had started that feeling went away
but now the treatment is coming to an end all these feelings are coming back.has it worked if so how long for , then blood tests every 3 months
So basically back on watch and wait
As there is no cure for Chronic lymphocytic leukaemia (CLL) it’s just one big merry go round
I can really understand the mixture of emotions you are going through and as you say you are basically back on watch and wait and the blood tests every 3 months. Yes, it is a merry go round, perhaps it is also an emotional roller coaster too. I find however long I am on them the anxiety comes whizzing back before blood tests or medical appointments. Also I wonder how others see me ‘has she really got leukaemia?’ , ‘is she back to normal?’, ‘is she cured?’ etc. Also don’t forget the after effects of treatment and I believe that the body has taken a great toll emotionally, physically and practically so it takes time to build back up again. Take lots of care of yourself.
Hi @Coxy I found the toughest time was not during treatment but when everything stops, even though I was still having to go into hospital weekly for blood tests and care for my Hickman Line. I had anxiety and panic attacks and for a short time went on a small dose of anti-depressants which took the edge off without turning me into a zombie. I did not have CLL, and cannot imagine what it must be like to be on Watch and Wait, but there are other posts on the forum dedicated to Watch and Wait. Click on the 3 bars at the top, which will tell you what else is available on the forum. Good luck
hi @Coxy I hope you are doing well? It’s a really positive thing that you have reached out for support on the online forum. I hope the really thoughtful insights of @Pisces56 and @Erica show that you are not alone @Coxy, and that what you are feeling is so understandable. It does sound like there is anxiety around going back on watch and wait, it is only natural to feel this way. I’m wondering if you would like to talk a bit more about your concerns? please do share whatever you are comfortable with @Coxy
Thank you Erica and the same to you
Thanks pisces56 you take care