I have been really interested to read of other responses to the moment of diagnosis here (and elsewhere). It is a life-changing moment in every sense of the phrase. I was diagnosed in February, 2011 and, despite staying "well" (in the CLL sense of the word) and remaining as yet untreated, my world has been re-defined by the diagnosis in so many ways.
Like many others have said - I don't want to bang the drum for the positive impacts of a cancer diagnosis - but I have learned to see the world differently now I no longer have the luxury of imagining that my future is somehow boundless and totally under my control.
One of the ways I deal with things is to write them into stories. This is the story I wrote last year about the day I got diagnosed. This story is constantly in progress, and a fair bit of water has passed under the bridge since I wrote it. I have a greater understanding of the disease, of its potential impacts on my life, of the medical research and advances taking place in the field, and of my own abilities to accommodate having CLL into my life (which I continue to live to the full).
I'm just offering it here as a personal record - a kind of written snapshot - of a day that changed my life as I think many of you will recognize the elements of it that may chime with your own stories. It is quite long (by blog standards) and I wouldn't normally take up so much space, but I wanted to get down everything I felt that afternoon:
It’s a cold and cheerless afternoon in late February...one of those occasions where incipient damp and gloom conspire to reduce the horizons and possibilities of a day. My tutorials are done, and I am frantically trying to extricate myself from the endless undone tasks for the day before leaving campus for a 4.20pm appointment with my GP. He has results for me from a recent blood test. I am tired...bone tired and feverish...have been for weeks now. I just make the 4 o clock bus into town and collapse into my seat amongst the buoyant chatter and canned music of homeward-bound students. I think about my lecture tomorrow, and the prep I will need to do this evening. I want to sleep. At the surgery I find another seat to sink into and flick through a celebrity magazine whilst I wait to be called. Kids play noisily with the pile of broken plastic toys in the corner of the room. The incessant clatter is irritating to me now, but I am reminded with some nostalgia of the days when my own (now teenaged) boys would do the same. It seems like yesterday. I flick through a celebrity magazine. Tales of weight gain and loss, fashion successes and failures, the scandals, trials and tribulations of celebrity love.
The room smells of damp wool – it is raining outside. A number of people sit with me on the plastic chairs waiting to have their symptoms evaluated and translated into diagnosis. I wonder what’s wrong with each of them as I look around me, surveying them covertly for clues. I suppose that they may do the same with me. The previous patient exits the consulting room, and I guess I must be next. The GP follows him out, avoiding eye contact with anyone in the waiting area, and goes into an ante-room where he talks to a nurse in hushed tones before returning to his room with a sheaf of print-outs in his hand. I think nothing of it, and continue reading the magazine. I take a professional interest in the cultural obsession with celebrity and am absorbed. He calls me in, sits me down, smiles oddly at me and then says (as if reading instructions to himself) “OK, let’s do this properly – would you mind getting up on the couch please so I can examine you”. I am slightly surprised, but do as I am bid. He feels my abdomen, sits me up and feels in my neck. In hindsight, I know what he was looking for – the swollen liver (hepatomagaly), spleen (splenamegoly), and lymph nodes (lymhadenopathy) that belie the accumulation of rapidly proliferating immature and malignant white blood cells in the factories and storehouses of the immune systems of leukemics. I am back in the chair, he looks at me again and tells me that all of the tests run on my blood were “absolutely fine.” He pauses. “except your white count.”
I look at him expectantly, awaiting numbers, possible reasons for the aberration, an explanation of why I have felt so tired of late, a prescription perhaps, an edict to rest at home for a couple of weeks maybe? He says nothing.
“How high?” I ask.
“Sky high” he replies “67k” (a “normal” wbc would be in the range of 2-5k , but I can’t remember the normal counts at the time)
I quickly dredge the silted depths of my medical knowledge - I gave up nursing over ten years ago to start my academic career. It must be an infection obviously... I hazard my guess.
“No” he tells me “there is no infection that you could survive that would produce a white count this high.”
I am momentarily stupefied (in hindsight it seems so obvious – what was coming).
“You were a nurse weren’t you?” he asks.
Then – sliding the lab report across his desk to me, he points at the words “frequent smudge cells - probable CLL” printed in the section reserved for the pathologist’s comments. He won’t say it – and I genuinely don’t recognize the acronym. I was an emergency nurse. Haematology was not my specialism. I shake my head.
“Sorry” I tell him “I don’t recognize it”.
I am aware of feeling annoyed with myself. I have failed the test he has given me, disappointed him somehow, and now he is going to have to tell me the answer (I think afterwards about how successfully he transferred responsibility for the disease lock, stock, and barrel to me in that room on that February afternoon). He looks nervous.
Reluctantly he translates the acronym for me.
He tells me I have chronic lymphocytic
"LEUKEMIA"
My ears immediately
shut out every sound in the room
other than his voice as it tells me
(as if through noise reducing headphones)
that it is I N CURABLE (though apparently treatable)
He tells me he doesn’t know very much about the disease, that he has no real idea of the prognosis
(maybe five - 5 - years, maybe m o r e , maybe less.......),
When I try to push him for information (I don’t really know yet what information I need, but I am wondering already things along the lines of ...what will my life look like now? How should I envision my future? How long will I stay in the world? Will it hurt? Will my hair fall out? Will I have to stay in a hospital...) he tells me that I should
“look it up on the internet”
(here he hands me the sheaf of papers I saw him pick up from the printer earlier – a summary of the disease for the newly diagnosed from a CLL support group).
Finally he tells me that he is “very sorry”
I believe him, although I sense that he wants me to go away now...
I leave the surgery in a state of profound shock.
As I walk the short and familiar route home through the drizzly dusk, my perception
of myself...
...of time...
...and of the way that I inhabit the world...
...begin a process of profound change.
Everything around me looks the same, but the mundane reassurance of
local topography taken for granted for so long has gone....
I have crossed over into a hinterland
I feel part-ghost,
already learning
to haunt my former life...
{I} am irredeemably altered...
************
Written close to the point of diagnosis, this is very much part of the journey, and not the whole story.
When my GP told me to go away and "look up CLL on the internet", I took that advice very seriously, and it is on the internet that I have come to know the disease and many others also learning to live with it - that was the moment where I really started to do the work of coming to understand and coming to terms with this disease...
Communities such as MacMillan, ACOR, UK CLL support, and now this resource are a vital part of the network of support and understanding that keep us informed and cared for - a space where we can all share our ongoing stories, and the various twists and turns they take against the backdrop of advancing biomedical knowledge that is changing attitudes and approaches to living with leukemia.
That day of diagnosis remains with me though - as others here have said about their own experiences. I am happy to share my personal story here as I know it has something universal about it too...
Jules
CLL recent diagnosis- worries
Alterations of the immune system caused by CLL B‐cells 
Success stories above 70 with Ibrutinib 
Can't accept CLL diagnosis.
CLL diagnosis 
