Newbie to CLL: Hello I was only... - CLL Support Assoc...

CLL Support Association
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Newbie to CLL

Hello I was only diagnosed with CLL this week after a frightening three weeks of blood tests and scans. I have been told that unless things change, I will not need treatment hopefully (if ever) for the condition. I had developed an enlarged lymph node in my neck after having vaccinations prior to a Far East trip back in January this year. The 'lump' kept coming and going and my GP thought it might have been a cyst. Before draining the 'cyst' he decided that I should have an ultra sound scan, this showed more enlarged nodes and so further tests were ordered. I had blood tests, a camera down my throat, chest x ray and physical examinations. It was the most terrifying and frightening three weeks, much of which I spent in floods of tears. I think it was the 'not knowing' and now I know I am beginning to accept that this is something I shall just have to live with. I would value comments and advice from other CLL patients in order to help me understand and learn what I can/can't do. I live in the UK on the East Coast of Yorkshire.

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Hi kitchengardener

Sorry that you have been diagnosed with CLL, but happy that you have found our community.

I was diagnosed with CLL stage 0 aged 47 in 2006, and have not as yet needed treatment. ... my experience was of being checked every three months for a couple of years, then it became every six months, and now every year. Others on the site have reported the same pattern.

Of course this is a worrying time for you, we all can relate to the ' shock ' of being told that we have CLL.

There is a lot of experience and goodwill on this site, I hope that you make good use of it, if you are unsure about anything just ask, you will not be ignored, you are not alone with your CLL ... or the wee lump in your neck.

ygtgo.

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Hi Kitchengardener,

I'm also in Yorkshire - there are quite a few of us here from God's own county. You undoubtedly have many questions relating to CLL. You will find answers in this forum; lots of helpful people here. I wish you a long treatment-free interval. Do your best to carry on with your life as normal and push the CLL worries into the background.

Good luck,

John (In Harrogate)

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Hi John After attending the CLL conference in Newcastle in July, I am wanting to maybe set up a support group for CLL in East Yorkshire. I know you are in North Yorkshire but would this be of interest to you?

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A support group is invaluable kitchengardener. I have been a member of mine since it was set up. The expert Consultant for Lymphoma

and the support nurse (both are excellent and go over and above) did most of the groundwork.

Get some leaflets printed and handed out on Lymphoma clinic days. It all helps to spread the word.

Good luck. You may start small but it will grow.

Be interesting to hear how you get on some time.

I hope you have a long watch & wait

Sue

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Thanks for the encouragement Sue, will keep in touch

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Hi Kitchengardener- welcome to this very supportive forum. If you click on my Avatar you will see my very first post called " the unexpected journey " which describes my own feeling of panic and anxiety in 2010 aged 56 on diagnosis, and more or less reflects what you are going through yourself now - but it will get better. Best wishes Caroline

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Welcome to the group! We can all relate to your anxiety and many questions. There are so many here who can share treatment help and info; the rest of us can encourage you as you go through this.

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Welcome. You will be getting lots of very good advice here. I’m glad you were able to find this sight.

This is a long journey and now you have a great support group to join you. Take a deep breath and learn all you can.

Pam

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The panic and fear you are feeling is quite normal. We all go through some form of it upon learning of our dx. Fortunately, you have found one of the best sites for quality information and terrific moral support. Take a deep breath, learn all you can, and if possible get a second opinion from a CLL expert.

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As others have said ....welcome to the club no one wants to join.

Just as important as the advice and maybe even more important... you'll find others who've gone or are going through this. You'll find that while our trips are similar we all have very different routes...

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Hello kitchengardener and welcome to this group, which I myself just joined a week ago, I am living in Iceland and I have not found anybody here from my country yet :) I can easily understand your frustration and fear being diagnosed with CLL. I have had nearly 10 years of W&W as it is called, being diagnosed at the age of 47 and I am very grateful for that time!

I am told that I will soon need treatment, probably with FCR. I accidentally found this forum and I am so happy as here I feel only heartwarming comfort and a lot of useful information. You will too.

My advice: Keep on doing what you like to do in life! Hilda

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Hi kitchengardener,

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As some others have said, there are many on this site from UK, and the parent organization ( CLL Support Association cllsupport.org.uk/ ) has many resources, telephone counselors, and in person support groups & educational meetings to help you adapt to your "new normal" with CLL. Check out their website at the link above.

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Next, as you look around this page, you will find a box labeled "Related Posts" (upper right column on computer screens, way below on mobile devices) and you can find many previous posts and answers to the many people that went through your same situation.

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Related Posts

+Newbie to CLL

+CLL Newbie

+Cll newby

+Newly diagnosed with CLL

+Newbie with CLL Diagnosis trying to get answers

view more posts

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If you want to find others with CLL that live close to you- try this feature:

healthunlocked.com/people-n...

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Len

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Hi Kitchengardener,

I can understand how frightening these last three weeks have been. As you say, it’s sometimes the “not knowing” that is the worst thing. Now you know what you’re facing, the new stage of acceptance and adjustment can begin. You may find it hard to believe at the moment, but it does get better with time. :-)

As a newcomer to CLL, you might find the following post helpful. It’s a list of “29 Things we can Do to help our journey with CLL". I gathered most of the points from this forum, so it’s very much a joint effort from everyone here.

healthunlocked.com/cllsuppo...

These are not complicated medical things – they are relatively simple, practical things that we can do ourselves. Not everything will be relevant to you, as we’re all very different, but I hope you'll find some useful points there.

I see you live on the East Coast of Yorkshire. A lovely part of the world. I live in South Yorkshire (Sheffield), so it’s not so far away.:-)

Wishing you all the best for your CLL journey,

Paula

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So sorry that you are going through this. I am happy that you found this site. The information, on sight etc has proven to be invaluable to me. Take a deep breath, stay off of Google-- the information is very outdated and highly inaccurate. Remember that CLL is a highly individualized journey. What some are doing may or may not work for you. As you get more and more testing done and you get to sit with the diagnosis a bit, it will become a little easier. Stay strong. Stay positive. We got this!

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