Irish greetings from a new joiner!: Hi folks, I... - CLL Support

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Irish greetings from a new joiner!

Firefly14 profile image
30 Replies

Hi folks, I'm new! A big thanks to you all for this great community which has already given me loads of positivity, information and helps since my diagnosis 3 weeks ago today!

I'm a 37 year old female in Ireland, I know I'm considered young for CLL. Luckily I'm stage 0 at present and really hope to remain there as long as possible, especially for my 2 small boys, aged 5 and 2.

I have taken a few weeks off work to process this new situation and hope to use this time to educate myself about CLL, to eat really well and do a little bit of exercise. And maybe even get some rest, something I don't get much of usually!

I was diagnosed while having routine bloods for my under active thyroid, which is checked regularly.

Anyway, a big Irish greeting to you all and thanks in advance for the support and help, I'm very grateful to be part of this community.. Even though none of us would have chosen to be here.

Thanks!

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Firefly14 profile image
Firefly14
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30 Replies
Oleboyredw-uk profile image
Oleboyredw-uk

Greetings, you are welcome. You'll find everbody here friendly and with a combined mass of firsthand experience.

Long may you remain at stage 0.

Best advice I can give... Dont panic, in general a slow moving illness with quite a bit of work being done to new novel (non-chemo) treatments.

Best wishes, rob

Firefly14 profile image
Firefly14 in reply to Oleboyredw-uk

Thanks so much Rob that's really helpful. Panic is exactly what I feel like doing!! But I will remember your wise words! Much appreciated.

KateEvaLen profile image
KateEvaLen

Welcome! Just to let you know that there are other Irish Cll'rs in this community. I was diagnosed in May and am also female and in watch and wait. You will find the posts from here a fantastic tool and the online community supportive and welcoming. I do hope we both have a long period in watch and wait before we face treatment and that all the exciting new drugs are available to us in the future.

Firefly14 profile image
Firefly14 in reply to KateEvaLen

Hi KateEvaLen,

Thanks for your really helpful response. Good to know there are others nearby! Wishing you a very long and happy watch and wait!

Firefly

KateEvaLen profile image
KateEvaLen in reply to Firefly14

And you too Firefly! In many strange ways you will hopefully find that your life will change for the better. Try and really enjoy Christmas and Santa magic with you boys.

HAIRBEAR_UK profile image
HAIRBEAR_UKFounder Admin

Welcome Firefly

I was diagnosed five years ago and am watch and wait it took a while to adjust being able to learn from the community has been a great help, take your time and although it may not feel that way at the moment you will find your feet again.

There are also quite here with kids, which must make it particularly hard for you at the moment especially when so young and yours need so much of your strength and energy daily, resting must be difficult. Try to look after yourself too, it is true things don't tend to move that quickly with CLL.

This is the latest CLL patient information booklet published this Summer by LLR leukaemialymphomaresearch.o...

Watch and wait leukaemialymphomaresearch.o...

You may find some of this helpful, and our Irish members will no doubt be able to give you any Irish steers to Irish resources.

Stay bright

Nick

Firefly14 profile image
Firefly14 in reply to HAIRBEAR_UK

Nick,

Thanks for sharing resources, the booklets are really helpful, and for your kind words. Hoping you are keeping well at present.

Thank you

Firefly

Irishcll profile image
Irishcll

Hi Firefly

My wife Jan was dx age 39 .

3 years ago now and We live in Dublin.

We would be happy to share information.

Regards

Michael

jangreen profile image
jangreen

Hi sorry that you have had to join the club but try to stay positive and have a merry Christmas try not to dwell too much on your dx and best wishes.

Firefly14 profile image
Firefly14 in reply to jangreen

Thanks jangreen best wishes to you and yours for Christmas also!

9876 profile image
9876

Welcome firefly, I also was diagnosed from a routine blood test about 6 weeks ago so I know what a shock it can be but this community is a great help in giving support and asking questions,

Firefly14 profile image
Firefly14 in reply to 9876

Hi 9876, sorry to hear you too have been going through the shock of diagnosis recently, thanks for your reply and hopefully we can share info/support.

Best wishes

Firefly

pitbull profile image
pitbull

Not much to add from what has been said except welcome to your new community of friends who understand.

I was diagnosed on Valentines day 2013 after a routine blood test, luckilly my bloods are good and I remain on Watch & Worry :) I am a 54 yo male.

Merry Christmas and may all your bloods be good ones

Kirk

Firefly14 profile image
Firefly14 in reply to pitbull

Hi and thanks pitbull, great news that your bloods are good and hope its stays that way.

Best wishes

Firefly

fieldmeadow profile image
fieldmeadow

Hi Firefly- welcome!

I'm a lot older than you, but nomatter what your age, it is still a shock when you are told you have cll.

I am post treatment and enjoying a long and good remission with the knowledge of newer and even better treatments available. But you are a long way off treatment yet!

So journey well and long my friend and keep in touch.

Firefly14 profile image
Firefly14 in reply to fieldmeadow

Hi field meadow,

Thanks for your kind response. It's really encouraging to hear that you're doing well, wishing you all the best.

Firefly

romarin profile image
romarin

Wise words from my sister when I was diagnosed last year, "Put on your own mask first." Take care of yourself.

Firefly14 profile image
Firefly14 in reply to romarin

Hear hear! Thanks! :)

RemingtonSteele profile image
RemingtonSteele

Another female type woman of the opposite sex has joined. Hi FireFly.

None of my physicals had shown I had anything. It was a swollen lymph node and it turned out that I had CLL and already in stage 4. A year and a half later I underwent treatment and I am now three weeks post final treatment. I think I am in partial remission. I've got an appointment next week to have more blood drawn and check on some of the side-effects I underwent.

Anyway, from a non-female living in a non-Irish country although my grandfather immigrated from Ireland if that helps, welcome to the family.

Randy aka Randal aka the 53 aged man from the United States.

Firefly14 profile image
Firefly14 in reply to RemingtonSteele

Hi Randy,

Well done getting through treatment, hope your check up is ok. Thanks for the welcome, sending you best wishes across the Atlantic.

Firefly

Welcome young firefly14,

I say that as I am many years older than you, and always feel for someone diagnosed so young. But you know, this CLL is well on the way to getting beaten into submission and in this, your youth is an advantage. Hard to stay positive in the first few weeks but gradually the fear will lessen and you will relax more, this is a great site to look for support when you need it. Have a wonderful Christmas.

Old in years and young in mind,

Bubnjay

Firefly14 profile image
Firefly14 in reply to

Bubnjay, thanks for the positivity! Great advice! Best wishes to you. Firefly

TheFrog profile image
TheFrog

Just to give you something to aim at I was 39 when I was diagnosed (stage 4) and required treatment within 6 months. I relapsed 11 years later and I'm now coming up to 20 years since diagnosis and I'm in excellent health and really enjoying life. CLL (actually I'm SLL) helped me to change my priorities and appreciate the things that are really important in life and stopped me worrying about the trivia. It has been quite liberating and in some ways one of the best things that has ever happened to me.

Good luck

Jacques

Firefly14 profile image
Firefly14 in reply to TheFrog

Hi Jacques, thanks for sharing your very encouraging story! Hoping I can adopt your great attitude! Your encouragement is much appreciated. Best wishes,

Firefly

JanetG profile image
JanetG

Hi, I too was diagnosed at 39, im now 42, and I also have 2 young children, like a few people have said, try and not Panic, I know its hard as the word Cancer is not a nice one to hear, but I have found this site amazing, there is no such thing as a " daft or silly question" as whatever your feeling or something you are unsure of, then I can guarantee someone on here has the answer or a kind word to share.

Stay positive and keep well,

Merry Xmas to you also,

Jan xx

Firefly14 profile image
Firefly14 in reply to JanetG

Hi Jan,

So lovely to hear from another young mum, thank you! Hope you enjoy Christmas with your family, best wishes

Anne-Marie

Newdawn profile image
NewdawnAdministrator

Hi firefly, and a warm welcome to you (albeit a bit late because I've been away in Prague visiting many a very fine Irish bar! :-)

The diagnosis is always a defining moment for us all and no matter how positive we feel, the fear lodges inside of us. I was older than you at dx but still have a dependent son so understand that additional worry. But you sound positive and strong in your determination not to let this dominate your life. Long may you stay in the very early stages and as others have said, there's a new promising dawn emerging on CLL treatment which is why I chose my name.

It's always great to hear from the newly diagnosed and new members. There's strength in shared understanding and hope your Irish eyes are always smiling :-)

Warm best wishes,

Newdawn

Firefly14 profile image
Firefly14 in reply to Newdawn

Newdawn,

Hi and thanks - even your name is uplifting thank you! - eyes are smiling having read your kind words

OzzieNick profile image
OzzieNick

Welcome Firefly!

Sounds like you are traveling well and adopting the best possible attitude. I am a 54 yo male from Australia and like you, diagnosed very recently. I was going to offer you some words of wisdom but from what I've read in your note there is no need. Well done, mate!

Have a great Xmas and don't let the bad news spoil it. You are good for some decades yet!

Regards

Nick

Firefly14 profile image
Firefly14 in reply to OzzieNick

Hi Nick,

What a great message to start a stormy day here on the other side of the world! Thanks a million. Hope you're doing ok and looking forward to sharing stories - hopefully we won't have too much to write about for a while yet!

All the best

Firefly

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