My son suggested that rather than we girls saying we are 'in remission', we should tell ourselves we are 'disease-free'. 'In remission' sounds as if it's a given that we'll get the dreaded OC back again. To me, 'disease-free' sounds more positive - and any little grain of positivity must surely be good for our spirits?
Phis xx
No evidence of disease(NED) is what I use.Yours sounds great as well x
No evidence of disease is good. I got stable last time so I hope I am still stable. Whether my mind is stable or not is another thing haha
Hi all ,I was also told to call it a chronic illness like diabetes etc sounds a lot better than the dreaded C word love to all Lynn x
This is what I found really helpful when I saw c on the list of chronic illnesses when stayed at a ward for my biopsy.
It is positive and enccouraging. Very good post Lynn, well done xxx
I think this is a really difficult one.....
We do need to be positive.
Our family and friends often have even more difficulty than we do living with the reality of this horrid disease, and really can't manage the recurrence probabilities.
I don't think we grasp all this to begin with, but learn as we go along, with a lot of help from everyone on here.
At the end of the day, everyone will use a term for their state they feel comfortable with.
I no longer feel comfortable with "no evidence of disease" as it sounds very reassuring. If they went searching with a microscope, they'd probably find something, so I always add a "visible".
I've never used "in remission", perhaps for the reason your son says! "Chronic condition" feels closest to right to me, except it sounds more stable than the up and downs we experience with recurrence and treatments and the times (hopefully) in between.
Hoping you're continuing to recover. xxx
I do not think it really matters what we call it-it will always be in the back of our minds .x
I agree,it's always in the back of your mind, but my oncologist says I'm cured because there is no evidence and that's as good as someone who has never suffered from OC.
But I'm not deluded,I am fully aware there's a high chance of re accurance,but at the moment I can't ruin my time here worrying about what might and might not happen.
It's a live for now mentality and I am having help to deal with quality of life and support as I don't always have good days.
I think we all have ways of dealing with things and there are so many brave ladies with so much advice and stories to tell I am in awe of you all.
Long may our good days continue and continue to kick the bad days in to touch
Love to you all,
Carole xx
Like your thinking Carole! And you are right, we have our different ways of coping and thinking about our disease. What is truly amazing and humbling is the way we all do manage our lives with so much uncertainty. Here's to us all. Xx
Thanks Val,I'll raise a glass to us all tonight! Xx
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