New to the community

[RockyKNX]

Hi everyone. Ive just joined the community after speaking to a very kind blood buddy for the first time. Im a 44yr old male diagnosed CLL 2.5 years ago. I live in the remote Kimberley region of West Australia. Its a 6000km bi annual round trip to my haematologist! Ive never met anybody in person with the illness as the population here is low to start with so i feel a bit isolated. Its nice to know theres a whole community out there to chat too!

[Newdawn Administrator]

A massive welcome to you Rocky from across the world! It's strange but I come from a fairly well populated part of the U.K. but still don't come face to face with fellow CLL'ers!

Tell us how you are doing on your CLL journey. Are there services accessible for you where you live?

Hoping you'll become one of our fellow 'blood brothers (and sisters)' on here. We may not share proximity but we share a common foe. We'll beat it more successfully together!

Warm best wishes,

Newdawn

[RockyKNX in reply to Newdawn]

Hi Newdawn

They say its the most common form of leukemia so i figured i might stumble across somebody with it. We have a good country hospital here but I have to fly to Perth for specialist services. There are plenty of doctors, counselors, etc and even a part time cancer nurse. I was told Id need chemo within a year most likely. Was a bit of a shock.

[BellaBee10]

Hello Rocky. They're a lovely bunch of people on here, you're in good company. That's a massive trip to the see the specialist! I was diagnosed 7 months ago and they've been a great support to me. Pleased you've found us.

[RockyKNX in reply to BellaBee10]

Thanks for that Bella

[Oleboyredw-uk]

Hi RockyKNX, welcome to our community. Similar to Newdawn and yourself I very rarely (if ever) knowingly see other CLL patients. The only exception is support meetings. I'm aware that there are others nearby but meeting never seems to quite happen for one reason or another.

Anyway, good to hear from you. You'll find lots of information here and other people with various experiences to share. You should not need to feel alone when browsing the questions and answers.

Your 600km trip puts my 30 into perspective!

regards, rob

[RockyKNX]

Thanks for the welcome, I appreciate that!

[TheFlyer]

Hey Rocky welcome - my first consultant said I would need treatment with in the next couple of years that was 6 years ago still no treatment.

The Flyer

[Bubnojay]

Hi Rocky

I'm sure the community that you are now a part of will help provide some support. You are kind of far out up in the north but what a fascinating and beautiful place to live.

Welcome and best wishes

Bubnjay1 (UK)

[RockyKNX in reply to Bubnojay]

Thats so re assuring to hear. Yes its beautiful up here and so is the UK.

[alexmcg48]

Welcome, I've a good few years on you & only found out myself something 18 months ago that I had CLL, after what I thought was a routine blood test.

There's plenty of good advice on here, from people a lot further along on the journey than myself, but one thing that seems to recur, especially in the early stages, is staying as fit & healthy as you can for as long as possible & those that can & do, can sometimes stave off treatment for many years.

Stay positive & ask any questions you may have, because there will always be someone to answer them.

Equally, if your feeling a bit down rant away, because there will others on here that have felt the same & will take time to listen & help you

Take care.

[RockyKNX in reply to alexmcg48]

Thanks so much Alex

[prosecco1]

Hi, and welcome to our site, though no one wants to be here.

I was diagnosed nearly a year ago, and would be lost without all the great help and advice given here.

I live in Glasgow, (pouring with rain at the moment), and unlike you, I have only a 20 minute journey to see my Haematologist, have a routine appointment tomorrow, so feel very lucky I don't have that mammoth journey you do.

Keep us updated on how you get on.

Elle

[RockyKNX in reply to prosecco1]

Cheers Elle. Blue sky here!

[Peggy4]

Hi RockyKNX.

This is a great community to join with many people all too willing to help. I think that with this CLL we can feel very much alone whether we live in the middle of a city or a remote area like you.

No need to feel alone here. So much goodwill and support available to you.

Hope to hear some updates as to how you go.

Peggy

[RockyKNX in reply to Peggy4]

Thanks Peggy. Ive had so many nice posts its overwhelming!

[Lyra]

Welcome rockyknx. I was diagnosed year and have learned lots on here as well as enjoying the friendly banter! I hope you find great support here. It's good to feel that you're not the only person affected by this condition. There's loads of us 😀

[Groetjes]

Welcome rockyknx. We live in Ireland and enjoy the friendly banter here too. We hope you find friends and support here like we have over the past year.

[OzzieNick]

Welcome Rocky. It was great to chat with you too. Hang in there, man!

[Loves2walk]

Welcome Rocky....to a site and people you never expected to meet! I'm so sorry you had to find this site, but I think you'll find it a wonderful support.

I am new to this site, hubby newly diagnosed in Feb. The support I've felt is amazing, and the knowledge we've picked up has made us feel better equipped to face this.

Wishing you good health.....lots of it!

[innowra]

Hi Rocky, OK you win I will stop complaining about my 1.5hr drive from Nowra NSW to Wollongong for my Hemo visits, there are not a lot of Aussies on here but we are always available for a chat😀 the only other person I know of with CLL is my sister. It's exactly 2.5yrs since my DX as well. I'm fine with it now, life goes on, And what a good life it is. Looking forward to a good ski season this year, but then it's doesn't snow in the Kimberleys does it😜 (for those not in Oz look up Kimberleys and Southern Alpine region NSW)

Keep well and live life

Cheers Lynne

[Cllcanada Top Poster CURE Hero in reply to innowra]

Hi Lynne

Hope you and your sister are partcipating in some type of familial CLL study, families with two CLL siblings are like gold to researchers.

Its vital we progress to finding the genetic markers for CLL that are passed down in families... if not for us then for our children...

Talk to your doctor, it is just a buccal swab and blood draw...

~chris

[Carol_Walker_AZ]

Hi Rocky,

I know it is all over whelming. I am new to this whole mess also. I was just dignosed in January 2016. There is alot of great folks up here that help you through to bring some understanding to what you are going through, It also lets you know that you are not alone,

Carol

[Kaycab]

Hi Rocky, like you I'm new to this board and CLL. The people who respond to us are amazing. My first thoughts were how pleased I was to find others diagnosed with CLL and knew what I was experiencing but then realizing how willing everyone is to share their knowledge and show how they care is beyond belief. The sites many recommend are so worthwhile. As Carol said its as basic as feeling you are not alone!

[wroxham-gb in reply to Kaycab]

Welcome Kaycab.

Just belowI've written a reply to Rocky we also applies to you. It certainly is a handy thing to do.

Take care

Sue

[wroxham-gb]

Hi Rocky and welcome.

A tip for you at your appointments. Write down your questions, record your blood test results and keep a folder. Over time you will find this very useful. Ask a question on here about what to ask? Its amazing what comes up.

My best wishes to you.

Sue

[Kaycab]

Sue!!! Thank you so much! So many questions! I meant to write them but didn't so now with your suggestion I will begin a folder. I feel my MD doesn't listen? The cough which actually has been 5 months continues and he keeps saying post nasal drip!!!??? I get the feeling since I'm in the WW group and of course am not receiving treatment I don't need support from the oncology group and really unless things change I should address my mediocre questions to my internist. Ok guess that's what everybody says is ok to do "rant" ! I cannot imagine all the stages of CLL and the various treatments you may all be on --- my heart goes out to each of you. I realize I am one of the fortunate ones - for now?!

[wroxham-gb in reply to Kaycab]

I would see your normal doctor for that persistent cough and take it from there Fay. Although it's probably related to CLL in some way (indeed what i'sent) after so many months it needs investigation and that would be the way to start, sooner rather than later. No question is mediocre when your health is at stake.

Take care.

Sue

[Kaycab in reply to wroxham-gb]

Thanks Sue!