Hi Im new to this group. I have recently been diagnosed with B - PLL which is a very rare blood cancer. Im on month 2 of medication at home. Im finding it hard to accept U have this & still in denial. Is there anyone else been diagnosed with the same as me?
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Dear @Glyn
Thank you for posting and welcome to the forum. I do hope you get to connect with others here that are going through similar experiences.
May I ask what treatment you are taking as this may connect you with other people on here too?
It is understandable that you are struggling to accept this big change in your life, do please keeping talking and perhaps take a look at our webpages on I’ve just been told I have blood cancer | Blood Cancer UK
The Support Services team are also here for you so please don’t hesitate to get in touch: Blood cancer information and support by phone and email | Blood Cancer UK
Best wishes
Gemma
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Hello there @Glyn, welcome to the forum. I’m really sorry that you had reason to join but am very glad you did.
As you say, your diagnosis is rare and you’ll see by reading around the forum that you’re not alone in having a rare diagnosis, nor how hard it is to accept our diagnoses.
Although I was diagnosed with a different rare disorder called Polycythaemia vera (PV), I can empathise with that sense of denial. What helped me get my head around it a little at first was reading proper research and avoiding Dr Google, so perhaps you might like to read this about B-PLL from the US equivalent to Blood Cancer UK: B-cell prolymphocytic leukemia (B-PLL) | Blood Cancer United
I see dear Nurse @GemmaBloodCancerUK has shared some great links for support and I would add that now is the time to seek support from loved ones and maybe even therapy as this sort of diagnosis is a lot to deal with.
If you’re in the UK you can seek free counselling via places like Maggie’s and even your GP. You don’t need to live with it by yourself and while these rare disorders can make us feel lonely you have now found a place where your concerns are understood.
Do please have a look around the forum using key terms related to your diagnosis and symptoms and hopefully you’ll find this big shock becomes a little easier to tolerate. Please let us know how you get on @Glyn.
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