Before Diagnosis and Special

Being special black old man cancer - Before Diagnosis and Special

I’ve always liked to be special but this is taking it a bit far.  4800 people are diagnosed with Myeloma every year in the UK and now I’m one of them.  I didn’t think I’d be saying that.  Well, actually, I did think I’d end up with cancer at some stage; most people do eventually don’t they?  It is in my family…but then I didn’t think I’d get it until much later.  I certainly didn’t think I’d get a cancer that is more unusual than others (15% of blood cancers, 1% of cancers generally) but, hey, I did say I like to be special.

I’ve chosen a cancer (or its chosen me) where usually a person is male, over 70, of African origin and instead I’m female (hurrah!), under 50, and white.  How is that for ironic?  I tell you… be careful what you put out to the Universe because the Universe delivers…maybe asking to be special wasn’t such a great idea!  Seriously though, this is one interesting cancer and I found myself kicking into scientist project manager mode as I ingested as much information as I could get about this new presence in my life.

Friends have asked: how did I find out?  What had I noticed?

Do people ask this because they’re scared they have an illness they don’t yet know about?  Or are people just curious?  Are they nervous about the seeming uncontrollability and randomness of an illness striking?  We never think it will happen to us, or our good friend or our family member but it does.  Illness happens to good people, bad people, people people, every day.  Some illness may be preventable, you know, the usual stuff about stopping smoking, eating well, exercising.  Frankly, if you don’t do those things you really are making it much harder for your body to keep working well for you.  Otherwise, illness just happens and the why is so often still a mystery.

Maybe my getting myeloma is like a metaphor for those of us who are so driven, organised, high achieving, generally healthy, and happy, who always want more, crave growth and development, yet simply cannot control everything. We cannot eliminate uncertainty and must learn to ‘bounce’, flex and sway in the wind if we are to cope with life’s little and ginormous surprises!  For all you control freaks out there (you know who you are and I love you!), I get it, I do.  I like to plan, organise and manage my way to eliminating as much uncertainty in day-to-day life as possible (we even have apps to help make this happen these days) and then demand and embrace the uncertainty, spontaneity and adventure while on holiday.  When it boils down to it though there is only so much we can control and that is OK. Life is meant to be this way; uncertain (spice of life and all that) and we can learn to cope well.

I knew something was wrong.  I’ve known for years.

BUT…I kept doubting what I knew because all the specialists, GPs and test results over the years had reassured me everything was fine.

Except one, a natural killer (NK) cell test that I’d had during IVF treatment (another story).  Even then no one mentioned that the presence of aggressive NK cells might indicate something nasty was going on, something other than my body being unable to let pregnancy cells implant properly.  When I got this result back in 2009 and it was repeated in 2012 (with increased NK aggression levels) I knew something was wrong with my immune system.

I just didn’t know how serious it was.  I also didn’t know what normal feels like, though I strongly suspected that most people didn’t have the trouble getting out of bed that I did, feel frequently achy, need regular Saturday afternoon lie-downs or constantly feel like their adrenals were maxed out.  I often thought of the wonderful, amazingly energetic women in my life who appeared to have energy to be super-mums, triathletes, Tour de France-type cyclists, mountain climbers, sailors. I’d think: their bodies can’t feel like mine does everyday, can they?  Then I’d look at the stress I always injected into my life; taking on jobs that were often bigger than me with steep learning curves each time, doing a masters and a doctorate, striving to work out a minimum three times per week and think, well, I bring on my low energy by my lifestyle choices.

Recently though, having finished the doctorate and chased it with a long break in New Zealand, I started working from home at my own pace on academic and exciting business projects. I had no reason to feel low energy or low mood or slightly and occasionally breathless. But I did feel these things and I didn’t understand why.  I kept thinking, I’m 47-years-old for goodness sake! I shouldn’t feel like this!  I had mentioned I had some slight breathlessness to Mum who insisted I get it checked out. So, when the offer a free NHS Health check for over 45-year-olds came through the post, I booked the appointment immediately and to see the GP on the same day.

In fact, it had also crossed my mind that my symptoms may be to do with becoming peri-menopausal.  I thought, if so, it would probably be prudent to request a test to get a baseline of all my hormone levels so the GP and I could monitor development and make more informed decisions over the next few years.  Sounds all too sensible when I read it back like this but actually, it was the lady in my local health nutrition shop that had suggested this, after I explained my mood had been a bit up and down, I’d been feeling hotter than usual (heat not sexy unfortunately) and my heart had been racing and loud.   This, coupled with a dip in my energy levels and a marked breathlessness during the previous week’s netball game, made me ignore the locum GP’s stress and deep sighing at my list of discussion points.

I asked her to look at all the niggly, singularly minor ailments I’d had over the years and consider them as a whole, please.  I explained I was sick of putting up with the niggles and it didn’t make sense to me to have them; something more fundamental about my immune system must be underlying it all.  To her credit, she looked at the IBS, hypoglycaemia, skin conditions of vitiligo and keratosis, waxing and waning energy and mood levels, unsuccessful IVF, breathlessness and past glandular fever among other things and ordered a set of tests that had not been ordered before.

I couldn’t be more grateful to her.

I couldn’t be more grateful for my Mum and the lady in the health food shop whose name I must find out.

They have extended my life. 

Being special black old man cancer 300x266 - Before Diagnosis and Special


Statistics: Myeloma UK.

Illustrations: Sapphire Weerakone, clinical psychologist, baker extraordinaire, artist and master doodler are among some of her many talents!

Editor: Stephanie Kemp, for reviewing my first post and helping me keep tenses under control!


© 2017 Janine Hayward  All rights reserved.

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December 9th, 2016 by
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Testing out the comment functionality for J

Ruth kennedy

What a fabulous blog from a first-time blogger.

Janine, thank you for your honesty, humour and fir choosing to share your journey with us. Your writing pulsates with your life, energy and vitality: hurrah for that! Ruth x

Ruth kennedy

Looks good to me!

Andrea Thompson

I can hear your voice in your writing which is lovely!

Kate Robinson

Janine I’ve started to read the blog so I can try understand what you are going through …cause I know I won’t until something similar happens to me. But thanks for sharing as it makes me feel a lot closer to you. All my love Kate X
PS you are a natural blogger!!


Janine I have started to read your blog too as I wanted to try to understand what you are going through. It’s great as it means we can talk about other things when we have play dates so you get a break from the Big C. Was fab to c u last Sunday and have a super duper time in Canada!!


Writing is defintily your medium J; your writing style allows such insigh and deptht into your world, and as others have mentioned we can hear your voice reading it.

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