Category: Pre Diagnosis

J - Tests - Radioactive, Angle Grinders and All Heart
February 6th, 2017 by Janine

The last ten days have been a whirlwind of hospital appointments, even on a Sunday (and people moan about the NHS!).  A bone marrow biopsy, a comedic event with four people in a tiny room, a lot of over-heating, Simon nearly fainting, the student nurse almost fainting, the blood aspiration having to be done twice, my counting the stitches on Si’s jeans around his crotch as that was where my eye line was and I needed a distraction from the drilling going on in my hip, the word ‘bitch’ slipping out accidentally and the nurse laughing her head off, her having to put her leg up and brace to get enough traction as I pulled against her to get a tiny piece of bone and some bone marrow out of me.  Phew.  All exhausted but amused. I was pleased that was done. Yes, it was painful but not too bad.  I’m not going to volunteer for one every week.

Then a pet scan where I willingly allowed a stranger to inject me with radioactive glucose, so radioactive that they suggest you don’t go near pregnant women or children for 6-8 hours.  I LET THEM DO THAT!  Anyway, you wait for an hour, you’re not allowed to do anything, even read a book as every muscle movement attracts the glucose.  The point of the pet scan is that the glucose settles where the most bone damage is and then shows up in the scanner.  I wondered what the grandmother on the tube thought later that day when I sat down next to her on the tube, opposite her daughter who was bouncing a toddler on her knee – then I remembered and quickly moved away.  She caught my eye, seemingly wondering why I had moved to stand when there were so many empty seats.  I don’t think she needed to hear ‘Hey, I’m radioactive!’  It’s ironic after all the years that Simon worked on a Nuclear Power Plant site and had to wear a full protective suit down to pink knickers when he went near the remaining radioactive rods and waste – I’m the one that is essentially poisoned with the stuff!  Still all in a good cause and the Pet Scan was nothing compared to the MRI.

Next up for my sins on a Sunday, a full spine and head MRI and then a full body MRI. Man alive, those things are loud, even the music through headphones had minimal effect and it stopped at times.  Need to remember to take my own ear plugs next time to wear as well.  Hopefully (or I’ll ask) the music and noise will be turned off when the staff need to speak with me.  Seriously though it was like having an angle grinder and a jackhammer going full tilt inside your head for 30 minutes plus.  Not pleasant and almost unbearable.  Come on amazing medical scientists; you’re clever enough to design better and better MRIs now make them silent please!!

The ECG and Echocardiogram looking at my heart were much tamer affairs.  I was in and out within 15 minutes with no more than cold patches with electronic nodes in them attached to my chest and cold Ultra Sound gel there too.  So, all good.  The results too.  Nothing wrong with my ticker.

Liar Liar

Over the 10 days of tests I met up and spoke with friends.  It was so hard not to say anything.  One of my values is to be open and honest, so much so, that I probably provide ‘too much information at times’.  This though, felt like ‘an elephant in the room’.  I felt like I was lying and to relieve the feeling on two occasions I mentioned I was helping a friend with cancer at the moment.  That friend was ME!  It was strange when they asked how my friend was feeling yet strangely helpful too because I could answer truthfully.  Being a friend to myself is an image I like and will try to remember and come back to as this journey zooms along.  I don’t want to burden my friends yet if the shoe was on the other foot I would hope my friends would tell me, and let me know how I might help.  I still hope that even when they will know I have my own big stuff going on.  Unsurprisingly, friends responded brilliantly when I did find the courage to let others know.  More about that in another post.

Next step – second consultation and understanding what these tests were saying.  I resolved to channel my long-term possibility of being clever, clear and calm as we went in to hear the diagnosis.

 

Acknowledgements

Illustrations: Sapphire Weerakone

 

© 2017 Janine Hayward www.psychingoutcancer.com.  All rights reserved.

 

Posted in Pre Diagnosis Tagged with: , , , , , , , ,

Natural Killer Cell - Preliminary diagnosis and she who stares.
January 30th, 2017 by Janine

 

Have you ever received one of those letters from a GP saying: “we have received the results of your blood test.  Please call xxx xxx xxxx to book a telephone appointment with the doctor regarding the result. This is NOT URGENT.”? Well, I have had a couple of these and they’ve never turned out to be anything fancy.  For instance, after one call it was suggested that I top up on some iron pills because my iron level was slightly lower than normal but nothing to “worry about”.   Therefore, I wasn’t worried when on the 10th of January 2017 I received a letter like this and duly rang to make an appointment.

I was a bit worried though when five days before the appointment my usual doctor, Dr A, rang me.  In my head, doctors don’t ring patients before their appointments unless absolutely necessary.  After all, they’re already swamped with the people coming into the clinic every day and under pressure to turn everyone around in ten minutes flat.  Dr A said, actually I can’t remember exactly what she said (not uncommon when the senses are aroused to something unusual) but the gist of it was “I’ve referred you to a Haematologist; there is something in your blood tests that indicates you may have lupus or cancer or…” I didn’t really take in the other few things she mentioned.  Dr A went on to say “we need you come in for another blood test and if you haven’t heard from Haematology within a week, let me know”.  Wow, within a week, Dr A means business: these were the thoughts spinning around my head.

I got off the phone and then kind of laughed it off – oh well – I had asked for my symptoms to be reconsidered as a whole, so I could hardly be surprised that they may have found something.  Yet I was surprised.  For over twenty years I had never felt I had straight or complete answers about any of my common nondescript ailments that for the most part I had got used to and adapted to. Now it seemed a new context was about to arrive.  Then practicality kicked in and I thought, no point worrying until I know there is something to really worry about. After all, the GP hadn’t confirmed anything.  I’d wait to see what the Haematologist said.

I almost didn’t mention it to Simon, my husband. Over the years he had heard me bang on about my immune system only to have nothing confirmed; I didn’t really see the point in bothering him. Then I noticed I had started to worry a little and remembered that Dr A was insistent I have an appointment with the Haematologist urgently.  So, in a full about turn I told Simon what was going on and asked him to come to the appointment with me.  One of the more sensible decisions I have made and one I’ll forever be grateful for.  Thank you, Universe.

 

We walked up to Kings College Hospital (KCH) on the 30th of January; it’s a nice easy 25-minute walk and I was enjoying Simon being off work on a week day.  We felt relaxed.  We found the Haematology Outpatients Clinic or HOP as I have come to know it.

The waiting room freaked me out.  It was busy.  Most people in there were at least twenty years older than me and many seemed to have mobility difficulties.  I felt out of place.  I walked around the corner to another seating area and a lady looked up me.  She seemed to be staring.  She was closer to my age.  The only one.  I smiled.  She smiled back, sort of.  I turned back to Simon to ground and distract myself.  I don’t know what he was thinking but he said something that made me laugh and I felt better again. Optimistic. Calm.

The Haematology Consultant, Dr K, was a bundle of energy and ushered us into a clinic room.  She didn’t seem to have my latest blood test results so I handed her a copy.  Simon was annoyed at this and immediately challenged her as to why she didn’t have the results to hand.  I thought, yeah, I love that; using his voice, making his expectations clear.  Dr K explained, apologised and we moved on.  I also gave her copies of the natural killer cell (NK) tests that I had from years earlier.  I was used to these being dismissed so was appreciative and slightly surprised when she looked at them with interest and nodded.  She kept nodding and making notes down the right hand side of a page as I answered her questions about symptoms, how much pain I was in (from this point forward every consultant I have spoken with has asked me about it, expecting me to have been experiencing pain).  I shared my usual long list of symptoms (more nodding) and said I wasn’t in pain (raised eyebrow) and insisted I found it hard to answer some questions because I don’t know what ‘normal’ is.

Dr K paused and then in very matter of fact way (perfectly done) stated that my last two blood test results indicated that I had Myeloma Blood and Bone Cancer and that they would need to run some more tests to confirm it.  I felt strangely calm but tears welled up.  Dr K seemed to misinterpret these a little but was kind and asked if I needed water or a break.  I explained my tears were about relief.  Relief that what I knew to be true – that something WAS wrong – had finally been believed, and validated. I no longer felt like a hypochondriacal fraud.  The tears were relief.  I could trust myself, my body, my knowing.  I did know my body best.

Suddenly, I was acutely aware of Simon who was sitting slightly behind me. I turned and looked at him. He was crying.  He had got it straight away.  He knew I was about to have a bone marrow biopsy and that was just for starters.  He knew that they hurt.  He hates me being hurt.  Dr K started explaining the biopsy and other tests I would need and Si said he knew what it was; he was a bone marrow donor with Anthony Nolan Trust.  He had been called several times for matching over the years.  I felt calm, clear but I was churning inside seeing Simon so upset.

Dr K, in what I would come to know as her splendidly efficient manner, initiated the needed tests and a follow-up appointment there and then and asked for another blood test that day.

The blood test went smoothly.  The phlebotomists at KCH are good and I mean really good.  I have had some serious problems over the years with nurses taking blood from me, not being able to find a vein, being rough or causing pain or a whopping bruise and the phlebotomists that take bloods day in day out are fantastic in my book.  I was in and out of there in minutes after a great chat and barely noticing there had been a needle in my arm and eleven tubes of blood vamoosed!

We wandered towards home slowly and then took a detour via Peckham Refreshment Rooms where I knocked back an Italian almond liqueur.  Just because I could.  It seemed the right thing to do.  It tasted GOOD.

Natural Killer Cell 300x277 - Preliminary diagnosis and she who stares.

Acknowledgements:

Statistics: Myeloma UK. www.myeloma.org.uk

Illustrations: Sapphire Weerakone, clinical psychologist, baker extraordinaire, artist and master doodler.

Copy Editor: Stephanie Kemp

 

© 2017 Janine Hayward www.psychingoutcancer.com.  All rights reserved.

 

Posted in Pre Diagnosis Tagged with: , , , , ,

Being special black old man cancer - Before Diagnosis and Special
December 9th, 2016 by Janine

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

Acknowledgements:

Statistics: Myeloma UK. www.myeloma.org.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 www.psychingoutcancer.com.  All rights reserved.

Posted in Pre Diagnosis Tagged with: , , , , ,