ON YOUR MARKS, GET SET…THE MYELOMA CHALLENGE

I’m 39 years old, no history of illness, Ironman finisher who has been diagnosed with myeloma. Did not see this coming. This blog summarises my journey from unexpected diagnosis through the treatment path. My aim is to use myeloma as a catalyst for living a better, more fulfilling life and documenting the changes I am making in all aspects of my family and work commitments.

Days 2 to 5

Sponge Bob – As good as it gets. Feeling chipper, blindly optimistic and getting on as well as can be expected

Jerry – Feel fine but there is a nagging awareness of a cat wielding a meat cleaver lurking around the corner. Translates to mild hangover

Garfield – I just want to lie down after forcing down some lasagne. Still able to function but don’t really feel like doing so

Charlie– Something is definitely wrong. No energy to kick footballs and feeling down in the dumps. Snoopy is on point for chores today

Eeyore–  How low can you go? No get up and go today. Probably cannot be bothered to tap on a keyboard. My tail will need pinning back on at bedtime

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My cousin Stuart sent me a thought provoking message today. He and I are both of the opinion that we were blessed with words so best use them to communicate. However, it got me thinking that perhaps I need to be more inclusive and maybe my wordy blogs are not connecting with the younger generations (and the plethora of Bunbury-Mum Whatsapp groups) effectively enough.

So donning my process improvement hat (yes, I am bored already) I have created the “Universal Scale of Popular Animated Characters for Millenials And Bunbury Mums” or

“U SPAnC MI BUM” for short.

Using the mode of communication favoured by the youth of today, i.e. pictures, it is my hope that “U SPAnC MI BUM” will effectively convey my situation on any given day without the need for what some might see as unnecessary verbatim.

For anyone interested in more than just pictures, I’ll try to use words to add a bit of colour, but on days where Charlie or Eeyore come out to play, that may not be possible.

If successful, I’ll look to donate this to the NHS for wider roll out so feel free to send feedback!

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Day 2

…began at 0200 as I’m on 4 hourly observation so was woken before the crack of dawn. (the nurse was not called dawn)

It’s definitely a Jerry day.

Starting to feel a little like I’m hungover but more than manageable. For the record, Day 1 can be classed as a Sponge Bob day despite the Hickman debacle. Looking forward to more of those in due course.

As I’ve stated previously, there are no barriers to conversation in here. I’ve already been told I need to provide samples of everything that leaves my person daily which apart from being bloody unpleasant, is still embarrassing.

But on the plus side, for all my single mates out there, my advice to you would be that  you simply cannot offend a nurse when chatting them up, so even the most ham fisted of approaches should be redeemable. (I’ve found they get most excited about convo’s involving “juicy” veins and needles. Different world but a good starter for 10 and way better than “you must be tired because you’ve been running around my head all night”)   Plus you get the uniform thrown in for free if you don’t balls it up totally.

I digress.

Because my blood counts are still good despite the chemo yesterday, I have been allowed to leave the room to go for a wander, so I’ll see how the medical team feel about me going to the Trafford Centre for the afternoon.*

*Request was denied

I’ll be getting my stem cells back later today too; it all happens in a very short space of time…

HOT OFF THE PRESS!

I will apparently smell of sweetcorn (it’s the stem cell preservative) for the next 48 hours so sorry to any visitors. Interestingly, as they are being infused I can taste tinned tomatoes!

Its 17:36 and we are sending in the troops…

This is what the NHS/McCleave coalition have been tirelessly working towards. No one likes war but on this occasion, we have no choice but to call upon the big guns.

Get in there chaps and do your duty!!

 

 

Nothing else of note to comment on today. See you on tomorrow

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Day 3

… as on day 2 began with 0200 obvs. Woke up again at 0730 still feeling tired. Hmmm, I think I might be starting to feel the effects of days 1 and 2 but refuse to accept this so did some exercise and went out for lunch. (Chicken Ramen if you are interested)

Hiccups have returned too which is a nuisance but not a violent as previous episodes.

Discovered an awesome place called Maggies which is an amazing building to hang out in. Its a centre where patients, families, anyone really, can go but was designed by Lord Foster and is more like a Scandinavian retreat than clinical facility, with wood burners, gardens and seating areas. I was also asked to take part in a promo video for them so look out for my first foray into film!

Keeping these short for the Millennial readership.

I’m off to Instagram and Snap Chat my Ramen because I’m that cool.

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Day 4

Something is definitely afoot in the BB house. Still getting out and about but I’m definitely more Garfield than Jerry today.  Feel a little more tired and dazed. My concentration is also on the wane as I can’t focus long enough on a screen to watch any TV. Probably a good thing. Food is starting to become a chore but with an eye on the bigger picture i.e. if I am not able to look after myself they wont let me out, it’s a case of force it down.

Time for some shut eye.  _______________________________________________________________________

Day 5

Opened one eye this morning to irritatingly find myself still in here. So much for the Dallas ending. Feeling more tired again today but not to the point of being bed bound so still getting up and about. I’m pleased I’ve made it through this week, just another milestone along the way but I’m now 5 days closer to getting out of here. I know next week is going to be much tougher but for now, to say I’ve been chemo’d, stem cell’d and can still function is a positive.

So, roll on the weekend. If I can muster the concentration there’s enough sport to pass the time with Football, F1 and Rugby on the cards.

If not then more sleep I guess!

 

 

 

 

 

 

 

 

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3 Comments

  1. Zihni Acar Yazıcı 25th May 2018

    Hi Pete,
    Enough sports on on the coming weekend? Definitely. On 25 May 2005 some event was unfolding in Istanbul, which some of the Nunroyd crowd watched in Roundhay, when the unbelievable happened: Liverpool got back from 3-0 down to lift the cup. Among the crowd, the cheering of ‘Liz’ is still pounding my ears. I am hoping to hear her doing the same thing tomorrow as the evens unfold in Kiev!
    And, I hope you will feel well enough to enjoy, too

  2. Kathleen Carline 25th May 2018

    P.S Got to love a what’s app group Pete, nothing would get done otherwise!

  3. JIM & SHE 29th May 2018

    Hi Pete,
    Great to read and hopefully not too challenging yet for you so far.
    Thoroughly enjoyed your talk with John Humphrys on BBC Channel 4 – you came across very well……
    All best wishes,
    The Smarties

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