48

para protein

What a year! I turned 48, I was diagnosed with cancer and I’ve completed 48 chemo sessions. I love the number 48; it seems so symmetrical to me (I love a bit of symmetry).  Now ‘48’ has a WHOLE new world of associations!

Warning…I have happy news, and, I’m going to talk about toilet rituals.

First, the rituals.  

This may seem very strange to those of you who have always been super careful about hygiene when using public loos.  In my defence, I have rarely worried about these things because my childhood in New Zealand was filled with non-traditional toilet arrangements. When you are fortunate enough to spend all day at the beach or walking in the bush or driving long stretches of deserted road or camping in remote sites you tend to get over yourself quite quickly about going to the loo wherever and however.

Doing your business quickly behind a tree, rock, or in a smelly long drop with minimal paper or alternatively leaves or seaweed, is not that unusual.  Worrying about being seen was always a bit more bothersome than worrying about bugs, microbes or possible infections!  The upshot is; I have never worried about using public loos, ‘catching anything’ or having to use disinfectant.  I just focussed on washing my hands well.

Waiotauru Hut bush toilet 225x300 - 48

Now that my immune system is compromised it’s another story completely….though maybe I’m being a bit anal? (pun intended)

In the Chemo Day Unit, patients are asked to ‘wipe the loo’ with anti-bacterial wipes before and after use.  I recently discovered I had developed a wee ritual…Take a wipe, clean toilet seat, fold dirty side in, use clean side to wipe toilet handle, tap, hand wash dispenser, door lock, door handle. Dispose of wipe in bin.  Use loo.  Wash and dry hands properly – you know the 8-10 step process (depending on the poster).  Take new wipe and clean toilet.  Goodness knows what bugs I could pick up if I didn’t do this; don’t tell me!

Anyway, this is a new ritual in my life and once again one that seems to consume a little more of my available time and life though hopefully is worth it.  It seems so, so far, as I have yet to pick up any major nasties despite lower immunity and chemotherapy for 9 months now.  This ritual has now made its way out of the hospital and into public conveniences.  AM I being anal?  I’ll let you be the judge!

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My News

…is happy, positive and hope-FULL…I’m very grateful for it and its effect; a reaffirmation of my faith in my medical team, the drugs and my health and life choices.  The Myeloma presence in my body has decreased further in the last few months… It’s down to 1 g/l (42 g/l at its peak) and a may be yet to plateau.  Yee ha!  Not only that, the serum kappa light chain results are 1.75 mg/l, backing up this great news and described as  ‘excellent’ by Dr L.  On top of that my liver is doing well. My Hb (Haemoglobin, the protein found in the red blood cells that carries oxygen around) level is back up to 121 g/l so I no longer need to consider taking EPO (yes, the cheaty cyclists’ drug of choice! I’m a tad disappointed.  I had wanted to experience how energised I’d feel!) While 121 g/l is lower than the desired normal levels (125 g/l plus) it is great for someone with Myeloma. My kidneys are also doing OK for someone with Myeloma, my Creatinine is 69 umol/L and normal level for women is approx. 45 -90 umol/L (I think; there seems to be some debate!).  Lots of good, great news, here. Dr L delivered these details and then reminded me to keep drinking 2-3 litres of water today for kidney care.  I imagined my kidneys; bloated, water-logged, bean-shaped balloons, wrapped up in clouds of cotton wool, floating about, relaxed and without a worry in the world.

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I’ve had yet another bone marrow biopsy and pet scan (what effect does three doses of radioactive sugar chasing gunk in a year have on one’s body? I guess I’ll find out!).  I have an ear numbing full body MRI coming up in a fortnight.

Let’s hope they show (or don’t show lesions at all) that lesions are further dissolved and there are no new uninvited guests!!

What a year.

48.

One number I’ll never forget.

 

Acknowledgements

Images: Me (graphs va KCH), Long Drop – Sarang (public domain use permission granted)

 

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

December 6th, 2017 by

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Daniel, Maisie and Olivia xJude RobertsonAnna CaseyKerry GriersonKate Robinson Recent comment authors
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Pip
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Pip

Janine, this is wonderful wonderful news!!! I am sooo happy for you!!! It won’t be long until we can do that bike ride together 🙂
Congratulations – it’s just so fabulous!!
Massive (but not bone squashing 😉 hugs from Ross and I
Pip xxxxx

Clair
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Clair

Wonderful news Janine.
Love the description of outdoor toileting in NZ.Can relate so well to that!
Love to you both.x x

Sue
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Sue

This is the best Xmas news ever! Love you to bits!!! S xxxx

Cathryn Usher
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Cathryn Usher

Awesome, awesome news Jay!!!!!!!!! So very happy to read this this morning. Much love. Cxx

Michelle Jones
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Michelle Jones

Thanks J for sharing your positive news! So good to hear, sending our love as always xxx

Pam
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Pam

Fantastic news J

Kate Robinson
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Kate Robinson

J9 such fantastic news!! So thrilled – but if anyone deserved such good news you did.
Looking forward to more good times !! Sam and I sending love

Kate xxxoooo

Kerry Grierson
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Kerry Grierson

Janine I am absolutely delighted for you, all your hard work and determination have give you some wonderful results, have the most amazing Christmas the both of you, you deserve the very best. Kerry xx

Anna Casey
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Anna Casey

Janine such wonderful news yippee! 48 what a year and tower of strength you are. Have a happy wonderful Xmas with your beautiful man. Bigs hugs beautful lady.
Love Anna xx

Jude Robertson
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Jude Robertson

Well that really is positive news Janine. I am thrilled for you. Happy New Year to you both and may 2018 be a healthy and happy time for you. Lots of love Jude

Daniel, Maisie and Olivia x
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Daniel, Maisie and Olivia x

Thats great news Janine. We are so happy for you. Love from the Ipswich branch.