Cycle One

Ok. Laugh out loud.

It’s actually supposed to be straightforward. Nu? Nothing in this journey has been straightforward!

So I present myself at the Day unit for duty, – yes’sir – and we go through height? (I’m sure I’m shrinking) ; weight? (skip this one) and standard obs.

My potion has already been crafted by the alchemist in the pharmacy the previous week so it’s there waiting for me – ready to roll.

The main chemo infusions are hidden under a brown paper bag like something dodgy found in an illicit drug dealers shop. Secretive, and smacking of something distinctly unpleasant. As interesting as it sounds here, and with the appearance of a dark and murky liquid, it is apparently a cover just to keep the drug out of direct light in case the potency of the killer chemo is affected. And its actually a pristine, clear infusion- so we check the picc line* is running clear. Tick.

[* the Peripherally Inserted Central Catheter is sited under x-ray guidance in a vein running from your arm into your chest: it stays for the duration of your chemotherapy; or until you discontinue, OR DIE]

My chemo is in 3 parts. Infusion 1 begins. This is the gold standard for PC. A noxious solution you wouldn’t wish on your worst enemy. It runs, and nothing untoward happens. Oh! Goody!

Now because I am fairly attached to my hair, and loathe to part with it by the handful, I opt for the space-tech cold cap treatment. Now this is a no Joker piece of kit. Imagine, if you will, a formed gel pack shaped to your head. On top is a crown, shaped like a cycle helmet in a pretty shade of luminous red. Voila! ice hat, bicycle helmet, now plug yourself into a freezer.

Yup. Now you understand why they have a sign at the door of the chemo unit stating…

……. No photography please.

Who wants to be pictured dressed like a real-time female version of Ali Baba (minus the 40 thieves)?

Now the ice treatment has to run for the last half hour of drug 1 (hilariously this is known as the warm-up). Then it stays on for the duration of the second infusion, Then add another hour for the cool-down. It’s the ‘freezer’ having a work-out, not you the struggling cancer patient. Ahem.

Now this is where it de-rails. Midway in the cooler-bag head wrapping procedure something goes wrong. I start to lose my speech, and the personnel are concerned I could have had a mini-stroke. It is so bizarre that I record a message to my support group, just so I can replay and analyse the damage later.

Infusion stops, head is uncovered, and we call in the doctors. After a bit of respite and a tad of luxury warming up (thanks to dear friend Shani for the beautiful blanket) we proceed with the remainder of infusion 2.

You didn’t really think I was going to share an image of the cold cap which was so hilarious, did you?!

However, you see I’m smiling, even tho’ I’d been turned down to quick-freeze settings, and sound like I’d had too many whiskeys.

But let’s push on. So we finally re-start and we get to the end of the infusion 2. Quite some delay ensues before the doctors are happy I’m “good-to-go” (home) and they load me up with the next brew (infusion 3). A portable bag with a third drug dispensing a slow infusion over 46 hours.

You return a few days later to have the unit disconnected and carry on with your precarious travails over the next 10 days.

Now you’d think not much could go wrong after all this, wouldn’t you. Aha! Onwards.

Going home with your paperwork (of course you’ve not read it until now. You’re focussing on being active, trying to be normal and simply staying alive [cue: video of Vinny Jones doing CPR to the Bee Gees Staying Alive]

However now you’ve read it you know you could develop infections, neutrapenia and sepsis. The former is a white cell depletion caused by the chemo. The latter is where the former creates an environment for an infection to establish itself – quietly and without you knowing – and then starts wiping you out. Both can cause you serious harm, and sepsis can also be fatal.

Oh yes. More cracking news.

Not that it’s going to happen to me. Is it……?

I have to travel to visit sick relatives during my off-chemo week; probably not the sanest of manoeuvres but I can’t wait until my hair (might) falls out. So I go, but have to pretend I’m well.

Would hardly be de rigeur to say. “hi, how are you all? By the way I’ve got cancer”…. whilst they’re sipping their tea.

So I start my week with a mild sore throat [duty Lemsip & paracetamol]. Next is a mouth ulcer [duty Corsodyl]; Next is a bit of a headache and a constriction in my breathing. [duty Doctor] not good at all……

By my last few days away, I decide to call my unit and explain I’m a bit out of sorts. The nurse says she’s a bit concerned. Maybe you should present at A&E?

Hmm. Last thing I need is to be admitted to hospital 100s of miles from my children.

So I struggle on for the last few days. By my final day away I’m feeling quite worried, especially as I can’t take a full breath. Whilst I’m talking to my chemo nurse she hears me struggling and recommends I go straight to A&E with the caveat… this is not sounding good.

Suffice to say after an excruciating day, where minutes drag out like hours, I make it to the airport and stand in an interminable queue, seriously wondering if I will:

a) make the 90 mins until boarding

b) make it as far as take off

c) make the first 50% of the journey, because after that the pilot wouldn’t be able to turn back.

I make it back to London, with 2 lovely young ladies on the flight who chuckle with laughter when they read my Cinderella page.

On arrival at Heathrow I ask hubby to drive straight to hospital – no point in taking chances. Unfortunately when I get to hospital my white cells have crashed, I seem to have an infection, my ECG isn’t great and they think a lung CT is necessary too.

Fast forward- I haven’t been home yet and spend 2 further days unplanned in oncology ward.

The CT comes back showing a PE (embolism) which I definitely wasn’t expecting. Now I am on heparin for life (or what’s left of it). I feel – once again – I’ve rolled a seven on the dice.

Lordy me, the adventures I have. Just as well I survived the flight.

But my charity concert is fast approaching and this is one date I can’t miss!!! See you on the 16th.

Jacqueline x