Thank you all

[Lyniek]

Thank you all... I'm feeling a lot better today ...much more emotionally stable lol ...it has been a struggle just to not burst into tears every few hours ...but iv been ok since iv got all this support from all you lovely people who know what is what and care enough to share ...I feel like I can breath again ....now that's a gift I get to keep for life thank you all

[Sushibruno]

Yes Lyniek, you said that right. "FOR LIFE".

[AnneHill]

Hi, I am so sorry you have been diagnosed with cll. I was diagnosed aged 43 which was 20 years ago. I didnt understand what it was and was very scared.It was 9 years before I needed treatment and I had 6 months of chemo. This included a drug called Rituximab and was a game changer. This was in 2010.

The reason I am telling you this is that this was the best treatment there was and it works. Since then there are tablets available now and treatments are being developed. Things are moving on.

I have no idea why you feel guilty. I am sure your family dont blame you.

When you are seen by a consultant and told what stage you are, things will be clearer. Cll is a chronic illness and there is no benefit being treated early. Most people get regular blood tests and are monitored until treatment is needed. Its strange being in a panic one minute and being told to go home and carry on as normal.

If you need treatment straight away it will get things under control. Most people live with cll it isnt an acute leukaemia. You and your family can stop panicking because it will be an anticlimax if you arent treated. I hope you get time to adjust before treatment.

Take care, Anne uk

[morepork]

Here's some more welcoming good wishes and virtual hugs from down in New Zealand. You've had some great replies with good information I know, and it all takes time to sink in. Those words Blood Cancer can be scary .I've been lucky enough to live for around 20 years with this CLL condition, long enough to go onto the newer gentler treatments .

😊

[Bubnojay]

Hi Lyniek

I have been part of this family, yes that is how it feels for a goodly number of years. I well remember approaching 4k members and celebrating when 5 thousand people from all over the world joined.

There used to be what felt like a little band of members that supported and welcomed those newly diagnosed. Now I am so pleased to report that many just like you have picked up the baton and are there supporting others. One day you too may feel like supporting others as you learn the world of Cll. Indeed the best responders are those I remember being in a total panic, thinking their world was coming to an end. Its not and all your replies prove it.

Please breathe and take your time learning so that you do not become overwhelmed.

I hope your Cll journey goes well and as you read try to remember that many are much further along in their journey and what they write about is not applicable to you.

Good luck, be happy and enjoy life.

Bubnojay

[ChristyAnne_UK]

So glad to hear you’re feeling better today, equilibrium restored! 😊 My tip: Don’t be overwhelmed by the complexity (and volume!) of information, the different types of bloods they measure, deletions, mutations, transformations, symptoms, treatments… and a partridge in a pear tree! That was the scariest part for me in The Beginning. But that was seven years ago, and I’ve learned I don’t need to know all of that, all in one go!

I have signed up fir the Daily Digest of posts from here, and if you read every word, it will be past lunchtime before you emerge… wiser, but hungry! 🙄 Now, I tend to skip those posts about treatments, as I don’t have to make those choices, yet, and (hopefully), by the time I do, all that will have changed, anyway! It’s just good to know there are so many options.

However, a daily dose of a few posts is enough for me to feel I know enough for where I am at, and get a feel for the people. (Btw, ALWAYS read Aussie Neil!)

Wishing you all the best on your journey. You’ve found the right people to walk gently beside you. Hugs.. x

[CLLCalifornia-USA]

I’m sure glad you found us. So many wonderful and compassionate people going through the same thing. We share not only knowledge but friendship. Welcome. Sally

[Ptown]

Hello Lyniek, I like to check in with our group each morning and so I was glad to hear you are feeling better. It is a shock to our system to hear that our health in now going to steer us in a different direction than we thought. For me it was odd to think that parts of my blood were acting up when the rest of me felt pretty good. I was 54 when first diagnosed, now seven years later, still on Watch and Wait. My identical twin sister does not have CLL, but gets a full blood count done each year. Our community here is filled with wonderful, compassionate people from all over the globe who stand at the ready to listen carefully to your questions and concerns and dispense helpful advice and share their insights with you.

Please know we stand with you and your family as you learn more about CLL and

How to live your best life!

Sending you rays of support from Michigan, USA. Carolyn

[Horatio2]

Hi Lyniek! I am so glad that you are feeling a bit better today. I remember the shock and fear that I felt when I was first diagnosed. This group is amazing, and I really don't think I could be where I am now with my diagnosis if not for this wonderful group of people. I won't lie and say that I never feel that sudden rush of anxiety, but it happens less frequently; and I know I can come here to voice my fears and concerns and receive all the support I need. Take care and remember we are all here if you need us! Lisa