Recently diagnosed

[TM1972]

hi, only received my diagnosis on Tuesday. Very emotional at the moment.

[Jm954]

Hi,

I'm sorry to hear of your Hairy Cell leukaemia diagnosis which is very rare but understood by haematologists.

Reading posts like yours because takes me back to the day when my leukaemia tsunami hit me. We all remember these early scary days when panic and terror is your constant companion.

This feeling will improve and abate but it will take time and during that time you will realise that this is a slow thing which gives you chance to educate yourself about your HCL enemy.

I made the decision not to share my diagnosis widely and it was a good decision. My initial advice would be to tell only those who need to know and those you need to support you.

In the early days I struggled to sleep, wondering when I would die and convinced every twinge, pain and slight discomfort was leukaemia related. It wasn’t of course but the fear was real.

Watch and wait can be a stressful time, watching your blood results and spleen, then looking for changes. Remember, nothing actually changed in you at the moment of your diagnosis even though you’ll now feel like a different, unsure person on shifting sand. The ground will steady however and you’ll learn to adapt to this new reality you didn’t want.

The important thing is you’re being looked after, surrounded by the safety net of the NHS and your loving family.

Here's a link to the LC Booklet: media.leukaemiacare.org.uk/...

and another about the emotional impact of blood cancer: media.leukaemiacare.org.uk/...

Wishing you well, let us know how you are.

Jackie

[TM1972 in reply to Jm954]

thank you x

[2003UK Champion]

Hi, I expect you are in complete shock, you have had a diagnosis that has rocked your world. I felt in a bubble, a parallel world with life going on around me. In hindsight I wish I had given myself time to just assimilate it. I have also found it helps me to write down all my fears, questions, thoughts and feelings to ask at any medical appointments you might have and I have also learnt to ask that follow up question too. I wish I had known about the Leukaemia Care charity website (leukaemiacare.org.uk) with all the helpful information that is on it. I could not explain to others what I did not understand myself. If you feel the need the Leukaemia Care Charity helpline is open Monday - Friday 9am until 5pm and they have a special evening service on a Thursday and Friday 7pm - 10pm. The number is freephone 08088 010 444. We are also all here to support you. Take lots of care of yourself.

[Jaybe1]

I’m sorry to hear about your diagnosis. My husband was diagnosed with a a rare chronic Leukaemia last month and like you are feeling very emotional and desperate for knowledge. I’ve found the information booklets on Leukaemia care really useful. Leukaemia is something that neither of us knew anything about. We are still coming to terms with this change in our lives and what the future holds but are managing to bring some normality back into our lives. I don’t think our lives will ever be the same but we want to enjoy the time we have together. I hope in time you can do the same.

[Cyprusfan in reply to Jaybe1]

Sorry to hear about your husband. Our son 25 was diagnosed with ALL back in August 4 weeks after graduation. I agree with you it is a very emotional time. I always thought it was something that happened to others. I guess we are those others. Here for you anytime.

Hayley x

[TM1972 in reply to Jaybe1]

Hello, thank you for your message. It all seems surreal at the moment.

[Cyprusfan]

Hi sorry to hear your diagnosis. Please take all the advice from these lovely people on this forum. I have found it very comforting as my son was diagnosed with ALL in August, which has thrown us into this world that we didn't know anything about.

Take care

Hayley

[NicoleLeukaemiaCare Administrator]

Hi there. Really sorry to hear about your diagnosis. Our help line is open if you'd like to talk to a nurse. Further down the line, you may feel like you want to speak to somebody else with hairy cell leukaemia. For this, we can find you a 'buddy' and put you in touch via email or telephone - or even both.

If you were interested in this scheme, simply email [e-mail]

[littledab]

Sorry to hear thAt

I sure know how it feels

What wAs ur diagnosis?

I have Cll leukemia.

Talk to u soon

Littledab