Hello : Hi,Very new to this. Diagnosed with... - Leukaemia CARE

Leukaemia CARE

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Hello

MAC28 profile image
7 Replies

Hi,Very new to this. Diagnosed with LCC this month.

So here to find information and what to do next

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MAC28 profile image
MAC28
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7 Replies
RossH profile image
RossH

Hi Mac - so sorry to read about your diagnosis. It’s a very worrying for you and your family.

What to do next- take time to take in what you have been told, tell family and friends as and when you are ready. You will have many many questions- some of which no one can answer .

The main thing I would suggest at the moment is to get as much info as possible from your medical team. Take it away, read it then go back with the questions. Most important, try to stay away as much as possible from the Google medics - there is so much info in the internet- some of which can be dangerous.

We at LeukCare will provide support where we can - there are some booklets (see these on the website) that have great info in them. Some of these are specific to CLL.

The Buddy Scheme is also great - where you can speak with someone who has had similar experiences.

Hope it all goes well for you

Ross

MAC28 profile image
MAC28 in reply to RossH

Thank you for getting back.

Yeah staying away from good old Google!!

I found some information leaflets and a website, where they are sending me some more. 🧐

2003UK profile image
2003UKChampion

Hi a great big welcome and great that you have found us.

As for the questions you ask perhaps you need to be guided by whoever diagnosed you and ask them the questions and any other questions that are playing on your mind.

I remember when I was diagnosed 19 yrs ago I was in complete shock and felt in a bubble with the world going on as normal around me.

I could not explain to others, including my employer, what I did not understand myself.

If you would like to speak to someone the Leukaemia Care support line is there for you .

The main thing is that you really look after yourself and be ever so kind to yourself and perhaps write your questions down so you are prepared at your appointment.

MAC28 profile image
MAC28 in reply to 2003UK

Thank you.

Totally in a bubble!. Trying to go on as normal and sometimes it's OK. And sometimes not, it hits me.

2003UK profile image
2003UKChampion in reply to MAC28

That's what I think is the 'emotional rollercoaster' that you might see referred to that clicks in with the shock of diagnosis, just be ever so kind to yourself and you are now part of the brilliant Leukaemia Care support system, you are not alone.

MAC28 profile image
MAC28 in reply to 2003UK

❤❤️

RossH profile image
RossH

Hi Max - just wondered how you are doing. Mentally- you will be all over the place. Like someone earlier said, you are now on the emotional and physical rollercoaster that is leukaemia. One good thing is that we are all here to support you when you need it.

Hope you have been able to get in touch with the folks at LeukCare. Let me know if you can’t find the contact numbers etc.

Keep going- keep pushing - keep trying.