Irredeemably Altered...A story of Diagnosis

[jibs60]

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

[Newdawn Administrator]

A moving and brilliantly written account of the event that changed your life Jules. It stirred my senses as I identified with so much of the mundanity you described around you as your personal world was spun on it's axis.

I also felt a sense of anger and inadequacy at the way the news was broken to you. Without obvious warning, with no opportunity to take an essential supporter with you. Advice to 'look it up on the Internet' and disturbing approximations of life span at a time when the GP couldn't possibly have been equipped to estimate.

Surely there must be a better way to deliver life changing news?

Since my diagnosis I've revisited that day in my mind and realise that just like you, I was evaluating the event as it unfolded. Your sense that the GP wanted you to go and relieve his obvious discomfort. I was aware that the Consultant was using every ounce of his accurate empathy skills to deal with me compassionately. But I found the profound depth of his unnerving concerned gaze disconcerting. I still do.

And probably in an attempt to ease the unpleasantness of his task I found myself saying, 'you do realise I'll never get travel insurance now!' He grasped the familiarity of a practical matter to assure me that of course he would write a letter to assist with insurance. I can smile now at the absurdity of that.

There's so much I could comment from your insightful depiction of the conversation that changed your life forever. And so much of it resonates with me. I was left in the day-unit with a patient receiving chemo prior to my diagnosis consult. I couldn't look at her and she couldn't look at me because we both felt for each other equally.

Could any situation be less appropriate?

Thank you for sharing this Jules, I'm sure it will profoundly affect many of us on here who appreciate the descriptive skill of the heart-rending account of the day your life irredeemably altered.

I suspect however that as time has passed and your knowledge has increased, your diagnosis and handle on it feels very different these days. In support.

Newdawn x

[jibs60]

Hi Jue,

Thanks for your comments of support.

You're absolutely right to point out that I feel differently about my diagnosis now I have a different perspective on the disease. That's a really important point for any newly diagnosed people looking in to take away with them - However disorienting and terrifying that moment of diagnosis might be, it does get better.

You do learn to accommodate the once unthinkable fact of having "cancer" into your life, and you do continue to live life with all of its ups and downs. I am sometimes amazed that I can still get wound up by petty little things that used to bother me, and that I thought I might somehow "rise above" in the rarified atmosphere of life with a chronic incurable disease.

In reality, the knowledge that you have CLL does bring some strangeness with it and, yes, it does make you feel like a stranger in a once-familiar land at times. The "not well yet not perceptibly ill yet" status of watch and wait is a tough one to manage for sure.

Equally though, the every-dayness of life goes on just as before. I'm glad I can still get fed up with work, irritated at times by the teenage behaviour in my house, anxious about how much to spend at Christmas just as I can be delighted by a sunset, an evening with old friends, a winter afternoon walk with my husband and my dog, a talented new band, or a good book. Those are the everyday moments that make up a real life, and with the chronic nature of CLL, they're going to keep on coming for some time.

Now, I'd better go and prepare my lecture for tomorrow, put the dog and the rubbish out, get those kids to do their homework and maybe, just maybe, get an early night...

Jules

[Hidden]

Hi Jules

I had read your post when I first joined the site, and I expect many others have read it and understood, recognised and sympathised with the feelings you so clearly expressed. I noticed that there were few responses, so thought I'd just drop this reply to say thank you for putting into words the day of diagnosis so elequently. I am sure that very many of us have read your story and not felt so alone. I hope you are doing well and living life to the full.

Thank you

Bub

[manzelka]

Hi Jules,

It sounds as if your doctor needs some training in how to break bad news to his patients.

I do hope you are manageing to stay well and getting all the support you need.

It was interesting to read others experiences.

My husband was diagnosed by a locum Gp at our surgery he wasn't asked to bring someone with him for support which would have been the ideal.

He was then refered to hospital under the 2 week rule.

The first words addressed to him by the doctor at the hospital were you didn't need to be refered under the 2 week rule.

Well i disagreed profoundly with that one,we had no idea what we were dealing with or how it would affect my husband what treatment would entail what his lifespan would be and many other questions. My husband had the choice to be seen by a haematologist at a local hospital which is part of the same trust as the one he was initially refered to and i have to say the consultant there could not have been more helpful.

We have lived with this disease since 2006,things are now getting worse my husband now has something else for which we as yet have no diagnosis but he is being admitted to a large hospital 40 miles away to be given intravenous immunoglobulin over the course of 5 days in the neurology ward. He has waited months for this treatment because his neurologist and haematologist didn't want him to be an inpatient because of the risk of infection nor did my husband wish to be admited to hospital for the same reason.The haematologist was willing to administer the treatment in the day ward.

It beggars belief that these consultants are denied access to the immunglobulin to use in what the powers that be call a local hospital despite it being a very large hospital.

It appears to me that NHS consulants are restricted by unnecessary rules regulations and red tape put in place by number crunchers who only see £ signs and figures.

all the best

Manzelka