New here 👋🏻

Hello everyone, I’m new here :neutral_face: I was initially diagnosed with SLL plus ‘watch & wait’ over a year ago. Following a bone marrow biopsy my diagnosis changed to Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (CLL)).
A few weeks ago I started on Acalabrutinib and thought I was doing ok. Over the last few days I’ve had an all over rash so have to see consultant again this afternoon. Somehow I’ve crossed a line?
I think I’ve been in denial all this time and am here to learn to accept what is happening to me and connect with you all :heart:


Good morning, Floss.

A very warm welcome to the community, and thank you for sharing. May I ask how you’re doing? Everyone responds differently to their diagnoses and it’s okay if you’ve been in denial. We are here for you however you’re feeling, and so if you’d like to talk things through please know you’d be welcome to call our Support Team on 0808 2080 888 (Blood cancer information and support by phone and email | Blood Cancer UK).

That’s reassuring to hear you’ll be seeing your consultant today. It’s important for them to know how you’re feeling and what you’re going through, and shed some light on the rash you’re experiencing.

Please do reach out to us if that would be useful for you.

Best wishes,


Hi Floss,
Welcome to the world of ‘itch and scratch’ and everything else the evil little enzymes send us.

I think :thinking: myself a pragmatic positive type and recognise I’ve got a lot still to learn not only about the “Bloody Lurgy” but myself and how I’m coping :mask:.

I recognise how I was physically and mentally before my treatment started. Weak as a kitten, losing weight like an anorexic and aneamic. When the treatment kicked in the weight went back on, stamina improved and prospects rising. I felt lifted.

But, and there’s always a but whilst disease symptoms lessened the medication toxicity sneaks in. I often question “Is that itch the Lymphoma Itch or therapy toxicity?” or “Is that blurred vision me getting older or the Ibrutinib?” :face_with_spiral_eyes:

Every day brings me new observations, feelings and questions. I’m sure the relief provided by treatment needs to be tempered against the price of 'body maintenance '.

My analogy is I’m an ageing old house that needs my gutters cleaning and my drains rodded. I have to accept that DYNOROD doesn’t come free :wink:

Make sure your positives outway any negatives :+1:


Good morning @Floss
Welcome to the forum. I think our body and minds are very clever in helping us to deal with what life throws at us and denial is a common way that many people deal with a blood cancer diagnosis. There are lots of stories on the web site of how different people deal with the emotional impact of a diagnosis. I have found talking to others in this same situation has been really helpful.

We are all here to listen any time for you.
Do keep in touch.


Oh @Floss I am so glad that you are connecting with us, you are now part of our forum family.
I firmly believe (I am not medically trained) that denial is there for a purpose to protect us and give us time to come to terms with our diagnosis…
It was a great shock for me and suddenly I was tossed into a world that spoke another language.
If you would like to talk to someone the Blood Cancer Support Line is there for you on 0808 2082 888
I think acceptance just comes in your own time, it cannot be forced or rushed, the main thing you can do is to look after yourself and be very kind to yourself, oh, and keep reading and posting on here, you are now not alone.
Please do let us know how your appointment goes.


Thank you Tanya, Jules, Iain, Erica for taking the time out to respond. It made a huge difference yesterday as I was quite overwhelmed by both events and my odd appearance in both total rash and swollen face. I was able to make my appointment without crumbling, knowing I now wasn’t alone in my emotions. I am married with both extended family and friends but I’m never totally honest with them, I feel I need to protect them to a certain degree as they’re already upset. I am so pleased I’ve found you all!
It is an allergic reaction to Acalabrutinib and has been suspended for a week until the rash clears then we’ll try it again. I feel like I’ve had a week’s reprieve!


@Floss I am so glad that you have found out what is causing your rash and swollen face please do let us know how you get on after your ‘weeks reprieve’
Congratulations on making your appointment without crumbling although it would have been very natural to have done so, I expect I would have.
Yes, I have also tried to protect others and put on my default smiley mask, for me it goes back to childhood and I got the message that if I said how I really felt then I would not be liked or loved. Strength and reliability were seen as qualities.
You are definitely part of our forum family, look after yourself.


Hi @Floss
How are you doing?

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Hello Jules.
Thank you :pray:t2:
I had a UTI in addition to the rash etc so was given two weeks to recover before I try the medication again this Monday. It’s a strange place to be, seeing your life go on around you but not being strong enough to take part in it. I had a heart attack three years ago, so have been here before but then I was in charge of getting stronger, this is different.
My thinking has grown over the last few months to discover that I have physical, emotional, mental and energetic bodies, all in one, perhaps more to discover? I spend time researching, reading, meditating, to try to understand this holistically. I feel like a philosophy student floating around everyone, like a dandelion clock, wondering about their perceptions of life. Not sure if I’m in some sort of mental loop?
Floss x


Hi @Floss the one thing I am grateful to my diagnosis for is the opportunity to get to know the whole me, and I learn something about myself every day, I was on autopilot before my diagnosis.
Keep exploring yourself

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That’s a great analogy @Floss the dandelion.
I do a lot of meditation through yoga helps me enormously.

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