Hi. I've new & have been lurking. : So I'm new... - CLL Support

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Hi. I've new & have been lurking.

asktinu profile image
23 Replies

So I'm new to the community. I was diagnosed in January 2016 after suspecting something was wrong for about 6 months, and having some B symptoms for almost a year prior to that. I have two other chronic illnesses that both result in a lot of pain and fatigue, so I'm told it's possible I have had CLL as far back as a hospital visit I had in 2012 when I almost died of severe bacterial pneumonia.

Presently, at the start of my second cycle of chemo and targeted therapy.

The reason I'm posting now is primarily to thank all of you who post and respond to each other with such empathy and kindness. This has been one of my favorite resources to search when I have a question.

Hopefully I can start to contribute to that. Been blogging on my own site about it for a while, and found a great app that keeps me connected when on my phone. Still a bit lonely for the company of other people who know what I'm going through.

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23 Replies
Newdawn profile image
NewdawnAdministrator

Hello Asktinu,

Come out from your lurking place to where you belong, amongst the community you have come to know and already feel part of. Absolutely nothing wrong with enjoying the site without posting but it's lovely to hear from you especially at the critical time when you're having treatment. I hope it's started well for you and continues that way. I'm sorry it's become necessary so soon after your diagnosis but it sounds like you've had a rough few years anyway and possible undiagnosed during that time. Having just endured bacterial pneumonia I feel your pain!

Where is your own site Asktinu, it sounds very interesting. Just be aware you haven't restricted your post to the community should you wish to divulge any sensitive information.

I hope your other conditions are not playing up during treatment and that you're remaining positive and buoyant. Love your tranquil picture.

Warm best wishes,

Newdawn

asktinu profile image
asktinu in reply toNewdawn

Thank you Newdawn. My site's out in the open (tinustuff.com/blog) but thanks for the warning about revealing my personal issues on this post.

Hugs,

Tinu

Newdawn profile image
NewdawnAdministrator in reply toasktinu

Unfortunately it's saying your blog page is invalid Asktinu.

Newdawn

asktinu profile image
asktinu in reply toNewdawn

That's weird, I just replied to a comment. Maybe I mistyped, sorry about that.. I cut and pasted this time - tinustuff.com/blog/a-day-in...

Newdawn profile image
NewdawnAdministrator in reply toasktinu

Got it now thanks! Made me laugh....:-) you certainly tell it how it is.

Newdawn

asktinu profile image
asktinu in reply toNewdawn

LOL well I try. Others who did so before me made it less scary. And levity, when I can spare it, seems to get more of my friends talking.

There's a lot of silence around cancer. I hope to spark more conversation.

Peggy4 profile image
Peggy4

Hi asktinu. Welcome aboard. I understand your loneliness. We can have so many lovely, caring people around us yet still feel very alone with this.

People here understand your feelings and there is always someone here to lend a friendly ear. It may take a little time (different countries, time zones etc....) but I've found that this has helped me so much when I've felt a little lost and I'm sure it will do the same for you.

Peggy

asktinu profile image
asktinu in reply toPeggy4

Hi Peggy,

Thank you for your empathy. I don't know why I was scared to post here.

Thanks also for the welcome!

Tinu

saintjohn profile image
saintjohn

Welcome to the site Asktinu,hope you find a level of support and comfort here that you need to help you along on your journey

regards

John

asktinu profile image
asktinu in reply tosaintjohn

Hi John,

People have been so great already. I really appreciate your comment- it's comforting just to know someone is out there and at least cares enough to say "hi back"!

Thanks again,

Tinu

PaulaS profile image
PaulaSVolunteer

Hi Tinu,

I just wanted to add my welcome to the other welcomes you've already received. I've found it a wonderful group to join.. It really helps to be able to talk with people who know what we're going through.

You say you're at the start of your second cycle of chemo. Maybe you'd like to tell us which sort of chemo you're having (which drugs are involved), and you'll probably find others who have had (or are still having) that same treatment.

Wishing you all the best,

Paula (in Sheffield, England).

asktinu profile image
asktinu in reply toPaulaS

Hi Paula,

Yes I'd like to do that in a separate post. Still figuring out how to.phrase it. I'm on the BR regimen, bendamustine & rituxan if my spelling is correct.

PE1234 profile image
PE1234

Hi Tinu

Welcome to this amazing sight with such lovely people that you will find knowledge ,warmth ,and friendship that you will feel you know each and everyone personally .

I hope your treatment is going well and you will soon be able to look back and say (well now that is over I am now getting on with my life )

Take care and enjoy each and every day .

Brenda 💐💐💐

asktinu profile image
asktinu in reply toPE1234

Thank you for your warm welcome! I hope so too.

pumpkin48 profile image
pumpkin48

Hi Tinu,Just wanted to send you warm wishes and a hug.I have no advice on treatment but am happy you found this site and came out of lurking and I hope we hear more from you and that your treatment goes well,Warm welcome,Pumpkin

asktinu profile image
asktinu in reply topumpkin48

Thanks Pumpkin! Hope all is well with you.

ladyprescott profile image
ladyprescott

Hello asktinu,

Welcome to our community. You have found the right place for knowledgeable people and I hope you continue to share and ask questions. Someone always has input. I am on w&w and have been for four years. As with you I suspected something was wrong in 2012 when after a move I had no energy and lost weight. I found this site kind of by accident and so happy I did. I lurked for a while myself before jumping in with questions and sharing. I hope that all goes well with your current treatment. Carole

asktinu profile image
asktinu in reply toladyprescott

Thanks Carole, I appreciate your insight and thanks for the welcome.

Loves2walk profile image
Loves2walk

Welcome!

I don't post very often but do read the posts daily. I'm glad you're here!

This site has been an incredible information source for me and my husband (he was diagnosed 3 months ago and is symptom and treatment free.) Even more than the information available is the positive attitudes of all who contribute here. I realized I needed some support to get out of the dark place the dreaded diagnosis can take us, and here it was.

I wish you good health!

asktinu profile image
asktinu in reply toLoves2walk

Wow that's very encouraging. I was wondering whether to invite my caregivers.

Bubnojay profile image
Bubnojay

Welcome asktinu, pleased to have you with us.

I want to join in wishing you well as you go through your treatment.

Sorry to hear that you have been through so much, hopefully your future will look brighter after treatment is finished.

Best wishes

Bubnjay1

asktinu profile image
asktinu in reply toBubnojay

Thank you so much Bubnjay1

SheySheySwimmer profile image
SheySheySwimmer

Welcome and best during your treatment and gojng forward.

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