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CLL – My Latest Diagnosis

May 31, 2014

Those of you who know me well know I seem to collect chronic conditions.  Thinking back, they seem to occur in the first two years of each decade, so imagine my excited anticipation for when I turn 50!

In order:
Aged 12 – formally diagnosed with epilepsy, now completely controlled by medication (since I was 17).
Aged 21 – formally diagnosed with PCOS.
Aged 31 – formally diagnosed with spinal osteoarthritis, thusly painkillers by the many and degeneration (although slow, thankfully).
Aged 32 and a bit – formally diagnosed with Jessner’s Lymphocytic Infiltrate – have a google.  Most common in men in their late 60s.  Faded after 3 years.
Aged 41 and a lot – formally diagnosed with CLL (although doctors vary between “I wouldn’t tell you this if I wasn’t sure” and “probably CLL”).

CLL has left me ambivalent.  As a writer, I have an irresistible urge to write about it, to get my thoughts out, marshall them and try to make sense of it.  I want to publish because I feel my story may help others.  The stories of others help me, so if one person can relate and feel uplifted or enlightened or less alone in the confusion, that’s why I did it.  Not to hurt or upset anyone, although I know I am loved and people will feel pain.  I am sorry for that.  Please know that there is no need and I am humbled and gifted to be so loved.

So what is CLL?  I’ll break it down:

C – Chronic.  This means it is a lifelong condition which will not go away, be successfully removed by medication, or that I will recover.  I will feel better and/or worse as time goes by.  All chronic conditions can be managed to a varying degree of success, and there are a wide variety of such conditions.  They are not diseases.
L – Lymphocytic (ooh another one!).  Just means contained within the lymphatic system.  It is the location of the chronic condition.  Not connected, apparently, to the JLI – I asked.
L – Leukaemia.  This is a description of the particular type of cancer cell that the bone marrow in my body is very, very slowly birthing.  Note the very, very slowly.  That is extremely important.

It’s that last word isn’t it?  When the very caring and practical GP told me, I felt a hot and cold flush of pins and needles move up and down my body, my eyes widened and panic flooded through.  I’m guessing that word will do it to you – leukaemia.  Swiftly followed by the word ‘cancer’.  But what does ‘cancer’ actually mean?  It means deformation of cells in the body which multiply to prevent the parts of the body in which they exist from working properly, slowly killing them.  My bone marrow is producing deformed white blood cells which will slowly travel down the conduits of my arteries and veins and collect in the junctions of my lymph glands.

Not that ‘slowly’ again.  Still very important.

I am completely asymptomatic.  CLL is only ever diagnosed when blood is being tested for something else and the higher white platelet count is noticed.  A couple of further blood tests to check it wasn’t an anomaly whilst fighting infection and a look down a microscope to determine the shape of the cells, and CLL is diagnosed.  It’s most common in those over 55 (again with the bucking the trend, I’m such a rebel!) so it is seldom deadly.  People tend to die of old age before actually needing treatment.  You can go 20 or more years without ever needing to be treated through radiation, chemotherapy, bone marrow transplant, or whatever course is chosen.

I am at the stage where I have a slightly elevated count.  Very very slightly elevated.  All I need is to be monitored by the local NHS (I would be nowhere without the NHS – I honestly believe given my collection of chronic conditions and various medications I would not be able to afford private treatment or insurance, so may well be dead).  Haematology and regular vampire-sucking of blood and that is it.  Nothing else.  To be honest, my arthritis is more of a pain (HAH! See what I did there?) than the CLL.

However, the fact remains that I have cancer.  I have leukaemia.  A very slow-developing type, which will not affect me for many years, probably.  I am a healthy person, which is positive.  Chronic conditions do not mean a person is unhealthy, it’s important to remember that.  I have conditions which affect my lifestyle, my abilities, and my way of being, but I do not have acute illnesses.  Healthy is relative.  I am healthy.  Just to be sure you get what I’m saying here.

But I have cancer, and I can’t pretend that the idea doesn’t scare me.  I believed before this diagnosis that statistics aren’t helpful, and that belief is set in concrete now.  Every individual reacts differently to treatment, and there are so many different types of cancer out there, each reacting and acting in a variety of ways particular to the person who has that specific type of cancer.

CLL is, although I cannot say or write it without a wry raise of one eyebrow (I’m doing it now as I type), the best form of cancer it is possible to get.  Yes, I did really just type that sentence.  It is the most likely to go into remission, and has the longest gestation (?) period and can be very successfully treated.  But that’s statistics again, and they apply in broad strokes, giving no real indication as to the individual experience.  Good statistics give hope, bad statistics give terror, and neither reflects the reality of the person being treated so how helpful are they, really?

I know I will need treating one day.  I am young to be diagnosed with CLL, so it is inevitable I will develop the cancer and need some form of treatment.  Rather than wondering if I will one day have cancer, and what form if I do, I know I will and how it will show itself.  That is, in my eyes, a great gift and an advantage.  I have time to get my head around the idea, to understand testimonials and empathise with others, to learn and perceive and come to terms.  I have deformed white platelets in my body, being born from my bone marrow, as I type, but I only know by accidental diagnosis.  I choose to believe I am lucky.  It is a choice, that my depression (diagnosed around mid-20s, recurrent not cyclical) and CBT/counselling/psychotherapy over the years has helped me to choose.  I practice, and I need it at the moment.

Because I am scared.  I am terrified.  All the reading in the world, all the stories in the world, all the hope and fear, will not truly allow me to know what will happen.  Will there be pain? Probably.  Will I die? Very unlikely.  Will it recur once it’s occurred once?  Possibly.

Then there are all the other questions, like will I have to stop working (I love my job), and when will it happen (impossible to know, but always on my mind) and so many others that pop up and disappear and have no real answer.  I like answers.  I don’t have any and nor does anyone else.

I am scheduled for my first haematology visit this month.  Three months after diagnosis, which is a good indication of how not worried the medical establishment are about this.  I’m hanging on to that.  I will question and probably prove to be a pain in the bum about this, as I don’t believe in simply saying yes/no and blindly following medical experts.  But they are the experts and I do trust them, just not implicitly.

I need to write this.  I need to share this.  I cannot have the same telephone conversation with the many people with whom I want to share this with, and who do not want to know but I need them to.  My blog will hopefully tell them, so I will re-share as much as possible.  I will react occasionally because it is always, always, in the back of my mind now.  It is a part of me.  I hope you understand and forgive me the pain it may cause.  It was unintended.

For more information try this link: http://www.ukcllforum.org.uk/about_cll.php

Thank you for reading this, if you did.  Please share it.  There are many who may find it helpful.  I hope you did. And if you remember only one thing, remember – “very, very slowly”.

Yours in love, and fear, and hope, and everything in between.
Big hugs! X

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From → Autobiography

4 Comments
  1. Hi, looks like you’re on “watch and wait”, which must be tough to get your head round. One of the things I latched on to after my diagnosis (HCL) was that the condition would not reduce my life expectancy – one day I would die of something else, maybe get run over by a bus!
    ‘Emotional Rollercoaster’ is a beautiful analogy – the peaks and troughs you’re currently hitting get less and less as the weeks and months go by.
    Best wishes for the future, and for any treatment you might have to endure.

    Stuart

    • Thank you for your response, which I can’t believe I have only just seen. That emotional rollercoaster continues, so I’m looking forward to a levelling out!

      All the best for your treatment and future too, should you ever need any of course! X

  2. Tracey permalink

    Big hugs xx

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