CLL Support Association
9,586 members15,044 posts

New to cll

Just got diagnosed, glad to find this site. I'm not that freaked out but not sure. The word cancer is frightening, lost a lot of family to it. BUT, I am 78 years old and have had a great creative interesting life. So okay waiting for the shoe to drop, in truth this one, cll, doesn't sound that bad, confusing but not bad. Ultimately we all die of something as does every living thing on this earth. I feel the biggest killer and destroyer is fear along with loneliness. So I will try to continue to be creative and live my life, do my work, do the things I love, follow the muse and not be a slave doctors.

This is the WW time as it all is, anything can happen at any time. I'm not the most positive guy, just think about all the beauty in this world. It is all temporary with or without cll. Pick up a leaf or a stone and really see it, that is pretty good and magical.

Much love and caring, Stephen

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oldestnewest

Great outlook, keep loving life!

Milton Keynes Marc

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A pleasure to read your post flugel1

Not the bit where you have been diagnosed of course, but your outlook on making the most of life. Here you are among friends who have walked the same path.

Hope you can remain the positive person you seem to be while you come to terms with your Cll.

I suspect you have the slow form and only really need to follow the living with CLL pinned post to help keep you infection free.

Do edit your post to make it only available to our community. Most of us are wary of open to the internet posts.

Hang tough And share more information when you can re blood results.

Best wishes

Bubnjay1

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To lock your post click on the v at the bottom of it, click on edit, then scroll down to the bottom and click on community only. Like others, I'm not into going to google or anywhere else and having personal information shared here pop up. Welcome to the group. I suspect that you will be with us for a long time.

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Hey Stephan! I never went through WW, it was more like "get your butt to the hospital asap or ........ "

So I didn't have time to think about a whole lot. I didn't look any different and my supposed pneumonia had gotten better.

You have the luxury of some time on your side, this is a good place to read up, to compare and contrast. But don't worry about the heavy stuff, if and when you need to do something treatment wise it could very well be a whole new ball game.

I'm pretty much CLL free now (ABT199), or at least as much as any can be, have very few symptoms, maybe more susceptibility to colds, and a runny nose much too often. But that runny nose may just be allergies!

My advice...... work on your overall health, just as anybody should, but in OUR cases, more with a Vengeance. Try to minimise the possibilities of other health issues, whatever those may be.

And that INCLUDES attitude, a positive one is attainable by everyone, figure out what makes you happy and make it happen!

Brian

Father

Farmer

Sailor

Climber

Cyclist (pedalling my way across Europe NOW, in

Hungary on the way to the BLack Sea , left the

Netherlands and the shore of the North Sea 3

weeks ago

Explorer

Adventurer

SURVIVOR , age 61

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Thanks Brian, you sound like you are doing it all, good for you.

Stephen (flugel1)

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Hi

Love your positivity. I am 73. Been on WandW since 2011. I appear to be one of the lucky ones to have the slow version of CLL. Do get horribly tired sometimes but now am being seen only once a year - from every 3 months initially. Try to keep as active as possible and enjoy life to the full.

Most of time forget I've got it.

Good luck on your journey

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So much of your wisdom and acceptance resonated with me. You write so well. At just a few months off 70 I too feel quite accepting of my dx. Still very early days, Wand W ( as is all of life! ) and just 6 monthly blood tests.

Having been absolutely traumatised by seeing what the ravages of Alzheimer's / Dementia did to my dear grandma, Aunty and lovely mum, I 'd be more than happy to have a different departure from our beautiful world.

I have learned to savour every happiness that comes my way and all the beauty In people, animals and nature.

Fight the good fight is my mantra.

All the very best, Brian. I hope you have a gentle ride with this " thing" and continue to enjoy your life.

This forum is so informative, encouraging and supportive.

We are so lucky to be able to share our thoughts here and have our questions answered.

Take good care of yourself .

Sue

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Nice to see you have a sensible approach to what can be a bombshell when first told the news.

Being a similar age and also on ww, a term I find frustrating at times, waiting for what? Life continues in a normal way once the acceptance is there. You appear to have the right idea. Am sure there are answers now as to why you get fatigued more easily and have sweats at night, if indeed you do.

Onwards and upwards as they say, never can understand that term 'as they say'. Who are they. Sorry just my mind working overtime.

This forum is excellent in keeping you informed and supported, am sure you will gain a lot from it.

Lead a good life and life will be good to you. Keep safe and enjoy the present and the future.

Dick

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5 years into my diagnosis this month. Still watching, not waiting (sounds like I expect something bad). Stay positive, stay as fit as you can, eat well, but most of all wake up everyday looking forward to what is waiting for you. Enjoy life and don't fear this diagnosis.

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Hi Stephen welcome to this sight. I love your attitude and agree it is fear and loneliness that does us the most damage in life. Glad you have reached the age of 78 before having to deal with cancer personally yourself. Your right it is a confusing cancer but this site will educate you well. Long may you stay on watch and wait and long may you continue enjoy your life.

Ann

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Welcome Stephen. Lovely intro piece. Poke around and listen to some videos and read. You seem to be at a very pensive stage. Once the initial diagnosis shock period wears off you will "live your life and be creative as you say.". 60% of people with CLL don't die of it but something else. Watch out for infections and germs and keep us posted. Ask questions and lots of members will try and help.

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Hi Stephen. Welcome to the family. Your positive outlook will stand you in good stead. As already mentioned. Eat well try to exercise & above all stay positive. Regards.

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What a great attitude! Enjoy each and every day. We don't know what tomorrow may bring, and worry won't change it. Glad you found this forum. Love your outlook on life. Sally (US)

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wow , your attitude is awesome and those that replied with their thoughts are wonderful too. please post more thanks

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Welcome to you lovely attitude l wish l had the same when l was diagnosed didn't know at the time l had it since 2006,not much changed really so I have learnt to get on with life the fatigue is not good bug this Cll family 👪 is wonderful and has been my life saver l wish you a long W@W and happy life x Maggie ps will look forward to seeing your positive posts.

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And you say you're "not the most positive guy"??? Yours is one of the most positive posts I ever read! Well, positive or philosophical, we have to take it all in stride, cause the fact is, nobody lives forever. I am 57 and have enjoyed a very healthy life, prior to diagnosed I was on zero meds whatsoever and maybe I "bragged" about that one too many times and suddenly I was facing this thing....lol! But as my alias on here...Que sera, sera and I'm almost seeing it as a positive at this point cause I'm "semi-retired" now, living a life of leisure and of doing only things that bring joy and peace. Best wishes to all!!

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What a wonderful outlook on life Stephen but there are so many new drugs and treatments in the pipeline that IF you do need treatment, you shouldn't give up. This site is wonderfully positive and encouraging although everyone has their days when they just want to vent or have a pity party. Don't worry about that either. That's what we are all here for - and we all all attend your party. Best of luck on your journey.

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Thanks for Yours post,Stephen!

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