Introduction

[Hevs333]

Hi my name is Heather and I have just joined the group I have cll was diagnosed in 2007 and still on watch and wait. Would be nice to catch up with someone local to me I live in Milton Keynes

[Feelsolow]

Hi Heather I'm Rob and was diagnosed with cll only a week ago x

[Hevs333 in reply to Feelsolow]

Hi Rob sorry to hear about you diagnosis you must be in the panic stage at the moment after 11 years of watch and wait I don't think about it 24/7 but it is always at the back of my mind. Where do you live?

[Feelsolow in reply to Hevs333]

I Live in stoke hun and yrs at the moment..I feel like my life is on hold xx

[Feelsolow in reply to Feelsolow]

Yes at the moment I'm panicking and feel like I'm in a terrible dream x

[Hevs333 in reply to Feelsolow]

I remember well those feelings. As time passes you will live with the diagnoses and still get on with your life as before but the first few months are going to be hard. Have you got yourself a cll specialist.

[Feelsolow in reply to Hevs333]

I have to have some bloods and a consultation on Tuesday with my heamotologist....is he my specialist???

[Hevs333 in reply to Feelsolow]

Well it could be your haematologist is an expert on cll but that is not often not the case my personal opinion is find your nearest cll specialist that knows the pro and cons on treatments and up to date with the latest technology etc. Then you can ask your GP to refer you.

A haematologist deals with many blood disorders ( a bit like a GP really... general knowledge on blood disorders but not a specialist in a particular condition like cll)

Many haematologists would disagree and feel they are quite able to deal with the condition (and many can). Only you can decide this it is your body and your condition and if like me you want the best possible person looking after you.

I see a lady call Clare Deardon at the Marsden who is a wonderful lady always optimistic and knows her stuff. I feel safe in her hands. A bit to far for you but I am sure if you Google it you will find an expert near to your home. Maybe someone on this forum can suggest someone for you.

It is still early days for you why not see how you bloods are and take it from there.

Good Luck x

[Feelsolow in reply to Hevs333]

Thank you Heather. Im trying to find a cll specialist near to me. I will ask my heamotologist on Tuesday xx

[DrunkJam_UK in reply to Feelsolow]

Oh my goodness. Hi Rob. I think this is the hardest time, the very beginning. (I mean, at least for our experience up to now) I am sorry for your finding yourself on this journey. My husband has CLL, and is still on watch and wait after some years. He sees a consultant, oncologist, but, for day to day queries and worries, he has a Clinical Nurse Specialist. They are wonderful. Do ask to see one of those. We have young children so we also do a lot of vaccinating and such. ooh, and we do a lot of trying to have fun, and make good memories together. Do feel free to chat / ask anything.

[Feelsolow in reply to DrunkJam_UK]

Thank you for your reply. It really is appreciated. X

[fieldmeadow in reply to Feelsolow]

You are quite young to be diagnosed with cll. I was in my late 50s and even though I was well into stage B it was over 4 years before treatment began - so try not to panic just yet. For your encouragement (and for others reading this post) I am 4+ years post chemo and enjoying a good remission. So take a deep breath (or two) and wait until you get a bit more information about what stage you are at etc. All the best.

[Feelsolow in reply to fieldmeadow]

Thanks for your reply. Best wishes x

[DrunkJam_UK]

Hi Heather. My husband was diagnosed with CLL in about 2015 I think. He is also still on watch and wait. We are not local to MK, but, we are both on line here! Welcome to the board!

[fieldmeadow]

So pleased you have started posting. I notice that you have been on watch and wait for a number of years which will be an encouragement for some. All the very best as you continue your journey alongside those of us in this supportive community.

[UK-Sparky]

Hi Heather, I am Marc, lived in Milton Keynes for thirty years. Diagnosed in 2015 but Dr Dungarwallar, my Haematologist at MK reckons I have had CLL since 2012. Who is you specialist? Are you on watch and wait?

UK sparky

[Hevs333 in reply to UK-Sparky]

Hi UK Sparky good to find someone in MK who is your specialist in MK? I was under Dr White but also the Marsden in Surry Claire Dearden I am still on watch and wait.

[Hevs333 in reply to UK-Sparky]

where in MK are you? you can send me a private message at [e-mail]

[lankisterguy]

Hi Hevs333,

Your post on this Leukaemia Care HU group has gotten several good replies from a small cluster of UK residents that are focusing on any blood cancers.

If you are interested in reaching a much larger group of CLL only patients you may want to also read another HU group: healthunlocked.com/cllsupport,

with about 20X the membership. However some of the members talk and spell funny as we are from USA, Australia and Europe.

If you wish you can set your preferences to get a daily email that shows all the new postings from multiple groups including Leukaemia Care and CLLSA.

Len

[Hevs333 in reply to lankisterguy]

I clicked on the link and it said page does not exist

[lankisterguy in reply to Hevs333]

Sorry- try this one:

healthunlocked.com/cllsupport

Or from your profile screen search for CLLSUPPORT and then choose "Follow"

Len

[NicoleLeukaemiaCare]

Hi Heather, welcome to the board. It is a little down the road but there is a Leukaemia Care support group in Luton if you were interested in meeting with other patients. Information can be found here leukaemiacare.org.uk/suppor...

[2003UK]

Hi Helen, I am sorry I am not near Milton Keynes, but welcome to the group and I hope you find it supportive, I do. I was diagnosed in 2003 with CLL and I have been lucky enough to be on watch and wait since then. Take care of yourself and keep posting.

[2003UK]

Hi Heather, sorry I am not local to Milton Keynes, but welcome to the group and I hope you find it supportive, I do. I was diagnosed in 2003 with CLL and I am lucky enough to still be on CLL. Take care and keep posting.

[Saska-Jul31]

I live near Ampthill so am fairly local to you.

Dx 2 years ago and am on W and W under Bedford hospital.

I have an appointment with a Haemo consultant this Thursday as my last bloods showed a near doubling of lymphocytes in the 6 months but still not too high. Will see what he says.

My best to you. 🌺

[Hevs333 in reply to Saska-Jul31]

Hi Good to find someone else close

I do hope your appointment goes well if you ever want a chat please contact me.

[Saska-Jul31 in reply to Hevs333]

Thank you It would be good to meet up some time too.

Don’t know how to pm you.?

I have met a lady at my local Rock Choir who I “ share” with but she has a different version think it’s MLL. Same symptoms of fatigue though.

Warm thoughts

Sue x

[littledab]

Hi Heather,

I was diagnosed with CLL year and half ago.. still doing the blood work every 3 months ...