Recently diagnosed and struggling to process it all

[zar6]

Hi everyone,

I’ve been reading through some of the posts on here for the last few days and finally decided to introduce myself.

I’ve recently been diagnosed with a blood cancer and, if I’m honest, I’m still struggling to come to terms with it. Some days I feel quite positive and tell myself to take one day at a time, and other days my mind jumps straight to all the “what ifs.”

It’s strange because, physically, I don’t feel as unwell as I imagined I would. I think that’s making it even harder to process. Family and friends have been supportive, but unless you’ve been through it yourself, it’s difficult for them to understand what goes through your mind after hearing the word “cancer.”

I’m trying not to spend too much time searching the internet, as that often leaves me feeling more anxious than reassured.

For those of you who are a bit further along in your journey, did those feelings settle with time? Did you find the uncertainty became easier to live with once you had a treatment plan or got into a routine?

I’d really appreciate hearing how others coped in those early weeks after diagnosis.

Thank you, and I wish everyone here all the very best.

[Grum]

I have recently (yesterday!) Been diagnosed with T-LGL leukemia, and feel the same as you.

Mainly feel fine, but then my mind jumps to the dark thoughts. I’m guessing this is normal.

My neutrophils rose from 0 to 0.02 yesterday, which was good news, start chemotherapy today… so hopefully things will work out

[DuncanB]

Hi @zar6

Perfectly normal to struggle to come to terms with your diagnosis.

The routine of appointments and treatments definitely helped me.

I also learned pretty quickly to live in the present, focus on what I could influence and accept there’s a lot I couldn’t control.

One day at a time was something I did and I’ve heard others say the same.

Take care

[DuncanB]

Hi @Grum

Welcome to the forum.

I was sorry to read about your diagnosis. It’s never an easy time.

Going into a dark place is probably something that happens to most of us at some point.

Trust that your Haematology Team will do everything they can as you go through treatment.

Don’t be afraid to ask lots of questions and let them know if anything changes.

One day at a time is a strategy I found helpful.

Good luck with next steps, treatment and do let us know how you are doing.

This forum is really supportive and lots of great people sharing experiences for the benefit of others.

[klf1956]

Hi @zar6

I can relate very much to how you feel. I was diagnosed Dec 2025 with Essential thrombocythemia ('Essential thrombocythemia ('ET')'). Complete surprise as I felt fine. So far I haven’t had to change my lifestyle, other than taking hydroxy carbamide. It is a lot to take in but you’re definitely not alone. It is a process especially in the first few weeks/months but you will get through it. Let us know how you get on. I found posting on here and emotional release which felt really weird. All the best

[Duncan]

Hello there @Grum, welcome to the forum. I’m really sorry to read of your diagnosis and those dark thoughts it’s bringing up. Like dear @DuncanB shows, there are many of us around the forum living well with and after these rare diagnoses. Let’s see if we can find you some useful information.

Here’s the Blood Cancer UK information about Large granular lymphocytic leukaemia ('LGLL'): Large granular lymphocytic leukaemia (LGLL) | Blood Cancer UK

Leukaemia Care also has some great information and further links regarding Large granular lymphocytic leukaemia ('LGLL'): Large granular lymphocytic leukaemia (LGLL) - Leukaemia Care

I’m really glad to read that you feel fine, but of course it would not be at all strange to find a diagnosis like this difficult, so do please be kind to yourself so soon after diagnosis. Do you have loved ones to share your diagnosis with and talk through how you’re doing? I found it really helped to express it all after my own diagnosis with a rare diagnosis.

Although I am not a doctor, it sounds like your diagnosis is a type of chronic leukaemia. As someone living with a different chronic type of blood cancer called Polycythaemia vera ('PV') may I just say that I’ve been reassured by my haematologist that chronic types are slow to develop, if at all. For me that’s been a relief, like I have time to learn about how my blood disorder might show up, what to expect, and get to grips with treatment.

I’m hoping that starting treatment feels like a relief for you as it did for me, do let us know how it goes. If you’d like to see how other forum members have got on with the chemotherapy you’ve started then try using the search box at the top to look it up. I’m sure you’ll find folks here who have shared about the same chemo.

Anyway, hope that helps a little @Grum. Do have a further look around the forum. If you have any medical queries then don’t hesitate to ask your specialist, and we can always call the lovely Blood Cancer UK nurses too for their expert, free advice on 0808 2080 888.

[Grum]

Hi, thanks for your support, and the links, I’ll check them out tomorrow.

1st day on medication today, 6 tablets & 1 injection… I feel like if you shake me I should rattle I feel a bit yuk, but that’s probably a combination of the meds and the emotional stuff… however, feel good that the meds have started, hoping they do the magic (if not, there are others to be tried).

[Duncan]

You’re very welcome @Grum, take your time with the links.

Sounds like you have quite the selection of medicines already! Rattling indeed I don’t know if you’re a creative type but it can really help to express how these sorts of diagnoses can make us feel, especially so soon after. Writing about it, or letting the emotions out of our system in whichever way feels right, can be so helpful. It also gives us a sort of record of our concerns, hopes and refreshed aims. Better out than in, as my mum would say!

Keep us posted about how you get on please @Grum, I’ll look out for your posts.

[Grum]

I’m currently back in hospital, as my temperature hit 38.5, and having zero neutrophils, it could be serious. Since I got here my temperature has gone down to normal, bit I’m awaiting blood test results to make sure all is ok.

However, below are a couple of poems I’ve written in the last few days… you mentioned being creative.

[Grum]

First covering the initial infections and the bone marrow biopsy. And the wait..

The Quiet Line

​A string of battles, small but sharp and deep,

A sudden fever breaking through my sleep.

The armor breached, the guard grown strangely thin,

As minor foes found easy ways within.

​Then came the word, clinical and cold,

A sudden truth the quiet numbers told.

Neutropenia—a drop beneath the skin,

The missing shields where defenses should have been.

​Now comes the deeper search into the core,

To find the root, to open up the door.

The needle presses downward, deep into the bone,

To map a quiet landscape, hidden and unknown

​And so I wait, suspended in the space,

Between the lab coat and the healing grace.

The answer sits inside a quiet room,

While I wait for the light to clear the gloom

#Neutropenia

Poem2:

I’ve been thinking a lot (for some reason) about how life can change so quickly, like the flip of a coin, or roll of the dice.

On the Flip of a Coin:

The morning opens with quiet routine,

A steady path, familiar, serene.

We plot out years on a calendar page,

Actors at ease on a predictable stage.

Yet fortune spins on a razor’s edge,

A step too close to a crumbling ledge.

For life can tilt in a fraction of time,

Without a reason, without a rhyme.

A sudden toss, a flick of the wrist,

And all we knew dissolves in the mist.

A roll of the dice on a polished floor,

And quiet chaos stands at the door.

Once you walk with a light, easy stride,

With strength in your bones and time on your side.

The next, a cold phrase from a doctor’s pen,

And the world is never the same again.

A quiet diagnosis, a sharp breath drawn,

And twilight falls long before the dawn.

The body, once vibrant, now pauses to heal,

Reminding us all how fragile we feel.

It strikes without warning, or out of plain sight,

In a split-second turn in the dead of the night.

A fortune lost, or a miracle found,

In a single beat where our hearts are bound.

The coin lands heads, or it falls to the dust—

A reminder of how much we hold upon trust.

So tread on this earth with an open heart,

Honouring every fragile part.

For the dice keep rolling, the coins still spin,

And the present moment is all we are in.

[Duncan]

Oh @Grum I’m so sorry to read this, but I’m so glad you’re in hospital being cared for with that high temperature. This is what my own haematologist insists I do if my temperature ever spikes with my Polycythaemia vera ('PV').

Let’s just hope your blood test results come back with useful information, but like you said those low neutrophils might explain things. That’s great your temperature has come down.

I’m really touched that you shared your writing and I will sit with it awhile before responding, but do please keep writing for yourself if it’s flowing. What an honour that you’re sharing in real-time here @Grum, thank you so much!

[Duncan]

How are you doing today @Grum, I hope that high temperature continued to come down?

Just wanted to say after reading your pieces more deeply how clever and poignant I think they are, really impressive. I was struck by how the risks and medical language became almost personified, which it does kind of feel like facing these strange disorders accompanying me. You describe so well that sort of liminal space we find ourselves in awaiting news or a diagnosis, and I love that there is optimism about waiting for light. And yes, life really can tilt in a fraction of time, so perfectly put, and yes the dice keep on rolling, giving us more chances along the way.

Really powerfully written @Grum, if I may say, and I hope writing for yourself can be its own sort of comfort, but I also know others around the forum will benefit from and empathise with what you’ve written. We have fellow forum members who are writers and others who share other forms of creativity and love of music and film, so do keep looking around, sharing, and reaching out.

As you so kindly and vulnerably shared your writing, I’d like to respond with a rare almost-rhyming piece I wrote a while back that echoes yours somewhat, after noting how often cancer is described like it’s a war:

Don’t Call It A Battle

Don’t call it a battle
It isn’t a fight
It’s not you against it
Nor has it 2 sides
More like an incoming attack
Uncouth to compare to current events
Totally running amok
If anything it’s an invasion
In the true sense of the word
Nothing to do with borders
Apart from blood-brain barriers
Permeable enough to get foggy
From the urge to resist
This chemo assault
It forges fatigue
To the marrow of your bones
In each and every blood cell
Another one-sided war zone

[DuncanB]

Sorry to hear you’re in hospital @Grum

Those temperature spikes come out of the blue.

I remember a few times where I had temperature rise plus shakes which led to admission.

Fortunately with IV antibiotics got things under control.

Just wanted to say I love your poems.

Take care and fingers crossed things settle soon

[DuncanB]

Wow hidden talent with your poems @Duncan

Really captures the essence of our cancers.

Thanks for sharing

[Duncan]

Ha yes I’ve always felt rubbish at “selling my wares” as it were @DuncanB. Thank you for your compliments, they mean a lot coming from you and your (if too soon for jokes, do say and I’ll edit this) 100 % survival rate realism! I bet you’ve got a thing or two to express about your many lived experiences.

Between us, @WIllow and @Erica (and I suppose anyone else in the world reading this) my diagnosis unlocked a whole flood of pent-up stuff and I finally let myself write anew and edit old stuff with more abandon. Although I’ve been tentatively approaching publishers, as I write for myself it feels really artistically satisfying.

[Erica]

Oh @Duncan your poem just says it so well, personally I do not see my diagnosis as a battle or war either.

Yes, @Grum 2 great poems, so insightful. A flip of a coin says it so well.

[Grum]

Thanks @Duncan and @DuncanB very kind words. I’m glad you liked the poems. Poetry and songs are something I’ve written for many many years. They let me express what I feel, but I think for me they let me think about the subject(whatever it is) in a holistic way… playing around with words etc.

I retired at the end of March (so retirement isn’t quite going as planned) , I used to be a design lead for BT (keeping the Internet going), and created BTs peer to peer support network (1800 members in 25 countries) . Before I left i got some of the Peer support members to write poems, together with folk from similar peer support networks in the BBC, Channel 4, Time To Talk ( a charity i run). Some of the poems (all about mental health) are very very powerful. (On amazon called “Poetry of the Peers”)

In terms of my health. I spent the night in hospital, loads of tests, my temp came down and stayed down in hospital. The Dr didn’t know why it spiked. But there you go.

[DuncanB]

I think the Consultant who said he would offer me the opportunity to have a Bone Marrow Transplant described my wife and I as informed and realistic @Duncan

There’s always a self publishing option through Amazon if you wanted to get your words out there. They offer a print on demand service I believe.

Yes have had some lived experiences and so does everyone in my experience.

[DuncanB]

You are very talented for sure @Grum

I’ll check out the book on Amazon

Hope things continue to improve

[Willow]

Hello @Grum and thank you so much for sharing your heartfelt and powerful poems. I, too, find writing poetry an important and vital way of processing my emotions and experiences related to my blood cancer diagnosis which was many years ago.

I really identify with the description in your first poem of what it’s like to have a bone marrow biopsy and then the anxious wait for the results and what that may mean moving forward. ‘And so I wait suspended in space’ resonates with me so much.

I hope your raised temperature has resolved and I wish you well. Please feel free to update us as and when you feel able and do continue to share your poems. Thinking of you. Willow x