My apologies for not introducing myself prior to responding to posts! I didn't realize that the newcomer information was not integrated with posting system. So here it goes...Diagnosed in 2015 (October)- via mammogram (enlarged lymph node). Spent the last 12 months seeking out literature, attending medical appointments (cancer clinic, labs), working and "trying to normalize life"( a challenge in the most optimal of living conditions). The most challenging aspect of this this diagnosis (so far) is the ''watch and wait" ; specifically, living life in 3-4 month increments- life framed around blood counts.
In reviewing several support networks, I am drawn to the international experience- hence joining in on the conversation - with all of you. Thank you!
Written by
Fiona2014
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Thanks for responding to my post...an endearing welcome!
I believe that connecting with others, who share the same challenges, allows for that space to exchange information; moreover, to provide support in thoughtful/ meaningful ways.
Hi Fiona and welcome. I'm sure you will find this forum very helpful as you come to understand your diagnosis. Lots of support and knowledge here from many different parts of the world.
From experience, you will find that, in time, that blood draws and doctors visits for CLL become woven into the fabric of your life... they cease being a sign post on the long and winding road...
Welcome Fiona. glad you have joined Diagnosed feb. 2016. W & W too. I agree with CllCanada not just because I am Canadian. 😀 One thing I came to a decision on was that I was going to live and not worry about the blood tests because I am not in control. I can't fix my blood test results but I can live to the fullest and deal with the blood changes when they become problematic. Before you were diagnosed you didn't live in 4 month increments why should u now. Just saying because when I made the decision I felt liberated. I stopped trying to control.
Welcome to the community Fiona, glad you found us though of course we wish it had not been necessary.
You will find the widest range of people at different stages on their Cll journey. So many lovely people willing to share their experiences. People who have literally become experts on the technical information available, and most importantly willing to share with us all.
No scary tales here such as you may have seen surfing the web, but of course the reality of cll is not ignored. Many have never needed treatment, but some of our community have and they too have been kind enough despite feeling poorly to share their Cll journey with us.
We all rejoice with those who post the successful outcome of their treatment.
Our community helps especially those who are newly diagnosed, quite a few who are given the diagnosis, but no practical help and information. Here they find they are not alone, over 4 thousand people share this disease on this site, and many provide reassurance and replies to help them come to terms with their Cll and realise it's not the end of the world after all.
I hope you will be glad you joined us and that the blood routines will soon become less stressful. Long may you watch and wait, but whatever lies ahead your new community will be here.
Best wishes
Bubnjay1 (nearly 6 years into my Cll journey without treatment.)
Welcome to the club no-one wanted to need to join Fiona.
I want to say how informative and empathetic the group here is - someone always recognises where you are at and will offer whatever knowledge and experience they have.
Depending on how your CLL progresses, you may well find yourself moving up to 6-monthly increments then to yearly - I hope this will be your version of watch and wait - and that your w & w will be long prolonged.
Welcome Fiona. I'm pretty new here too but I have no words to describe how happy I am that I found this site. I think I'm still in the denial phase although some issues have come up that I know are due to CLL. Ask anything you want and you will get an answer. Vent all you want and everyone will understand. We are all here for each other.
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