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CLL Support Association
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Hi there, I'd like to introduce myself

I am Ezabella, from Australia, a new member to the community of CLL, I was recently diagnosed with CLL went through hard emotional time, I'd like to share knowledge, exchange information with other members of the CLL Association, for mutual support.

Thank you,

Ezabelle

24 Replies
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Welcome, Ezabella! I imagine most of us went through a difficult time at diagnosis; I know I did. However, there have been so many advances in just the last few years that things look very hopeful. You have come to a wonderful site; the people here have been enormously helpful to me.

All the best to you.

Marie (Gigi3410)

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Hi Ezabelle

Welcome to our community of which you are now part. I'm sorry you have found yourself here but feel sure you will find us sympathetic to the initial trauma we all go through at diagnosis.

I hope you will browse through the pinned post and topics and feel you are not alone and can ask any questions that are worrying you.

We are a pretty international community and there are Australians too as you will see.

Early morning here in the Uk but I'm sure there will be others who will want to welcome you to this community that none of us wanted to be part of, but have found it a valuable resource and comfort.

Best wishes

Bubnjay1

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Ezabella - You will many here who are willing to exchange information. The shock of diagnosis takes a bit to process, but it does get better. Take a recording device to appointments, as it's easy to miss much of what is said when stressed. It is so helpful to be able to go home and listen to everything again.

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Ezabella

Good day

Ask away there are no silly questions here!

Hope you find the answers we all require when first diagnosed!

You will find the expert patients here extremely helpful.

Geoff

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Hello Elizabeth welcome to our cll family. We are a mixed bunch all at various stages and are therefore able to help, empathise and advise re most of the variables and complexities of this disease.

Whereabouts in oz are you Ezabella?

Sheila in Fremantle

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Hi Sheila, I am from Melbourne.

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You are fortunate ezabella...you have a world leading CLL specialist in Melbourne ...Dr. Constantine Tam

There are 4 parts of this video...on youtube

~chris

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Thanks for this video, I googled Dr Constantine Tam; he works at the best cancer hospital in Melbourne (Peter Mc Cullum Cancer center). Ezabelle

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This is a great site, it has helped me since my diagnosis a month ago. Welcome, and I hope this site can help reduce some of your fears and get back to a "new normal" for you.

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Thank you nkferg, wish you speed recovery. Ezabelle

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Ezabella. You've come to the right place. I'm sorry you have CLL, but glad you are reaching out to help yourself navigate this journey. May it be long.

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I really feel better now, after reading these warm supportive messages from the members, feeling lucky to know about this forum.

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Ezabella,

Welcome to a space that will calm your fears and know you not alone. There is light at the end of the tunnel. It's overwhelming to hear the dreaded "L" word at first. Like most of us here have never heard of CLL before diagnosed. Take comfort it's chronic. Here you will find wonderful kind people that are generous with their knowledge and understand the emotional turmoil you are going through at the moment. We were all there at one point. It will get better believe me and you may well be on w&w for the rest of your life.

Best wishes

AJ

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I hope I can stay on wait & watch for the rest of my life, everything is possible, wish you the same too. Ezabella

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Hi Ezabella and a very warm welcome to you. A diagnosis like this is always a huge shock to the system and it will take a while to get your head around it. All of us have been where you are now. DON'T try to understand it all at once. There will be time enough to learn what you need.DON'T read to much on google, you will only worry yourself unnecessarily. Lastly, DON'T feel alone, there are so many people here only too willing listen and offer advice and empathy so please DO keep in touch. You will learn how to LIVE with this. Very best wishes.

Peggy

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I am really glad to be a member of CLL Community, people at this forum seem to be very supportive. my best wishes to you too.

Ezabelle

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Welcome Ezabella....and so sorry that you've had to find this site.

My husband was diagnosed 4 months ago, out of the blue, and like you, our world was turned upside down.

I can say with all sincerity that this site eased me out of the dark place we go when we hear CLL. We have a wonderful, patient specialist who answers our many questions, but I have learned even more here, from those with personal experience!

I hope you find this group as comforting as I do!

Take care!

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I never knew what is CLL till I got it. All my life changed since February 2016, I think about CLL all times. I am frightened to google medical information about how it develops and progresses in the body, have been just trying to learn about a healthy diet.

It took me more than 3 months to believe that I got this dreadful disease, I was shocked so that I didn't believe, still thinking to see another Haematologist for a third opinion.

Now, after I joined this Forum, I started to feel better and have more courage to know more about CLL, but I am scared to see my Haematologist next week, I don't know what he may find in the new blood test.

Ezabelle

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My husband's hemotologist told us to stick with the cancer society sites, which is good advice but....In all honesty, I found those made me feel worse! This forum with real people who are living with it, has been our salvation!! They patiently and knowledgeably answer all my questions, sometimes over and over as this whole CLL is very confusing.

Keep checking in!

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Hi Ezabelle, welcome to the group. I am also recently diagnosed and I. Part still going through that emotional time trying to get my head around things. I feel though I am getting more positive by the day and a good part of that process has been helped by the great people on this site. I have a,so been juicing and exercising which I am finding is having great benefits to my overall energy levels and overall feeling of well being. Having said that if my next blood tests are not brilliant I may well go back to pizza and chips lol. I wish you all the best in your journey and sharing experiences with your supportive friends in this group

David

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I also changed most of my eating habits, I eat more healthy, but still like to have pizza and chips - once in a blue moon. However, I used to be always eating healthy before the CLL, the Doctor said to me that some people get CLL for no specific reason just bad luck.

Warm Wishes, Ezabelle

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Yes mine said the same not that it's any concelation for us. I'm 55 and never had a day off sick, luckily always been healthy and active which is something I plan to continue. Regardless of any benefits I'm really enjoying the juicing!!

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Welcome Ezabelle! You will love this group. You will find lots of different ideas and health philosophies. Everyone's CLL story has it's own pattern, like snowflakes, we are all different, but we can find education, support, and encouragement as we share our stories.

BeckyL

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Thanks for the warm welcoming messages I received.

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