Starters, orders and just desserts

Well a very good Sunday morning to you all. Are we all ready with our barbecues and flip flops, set to embrace today’s promised heatwave?  I can’t wait for the sunshine to come – I’m on it.

T-shirt, summer jeans, sun cream  – they’re all laid out and ready to go. Quick watch check. Hmm. It’s 5am. Over-keen? I’m not quite used to it yet, but 5am is my new, natural wake up time. It’s lovely actually – and one of the things I add to the burgeoning list of upsides I experience, or, elements of really good fortune in what could be seen as a relatively duff situation. I’m having this treatment in spring/summer. Great! I can lie in bed and listen to the birds waking up with me, watch the night sky fade to pale, and wait for the sun to come. Hurrah!

It’s four days since the last FEC-fest (Cycle 2, Day 1). The days since have been a little trickier to navigate than the equivalents in the previous cycle, but that, I was told, is to be expected. Over four months my system will be regularly topped up with glorious toxic goodies, and the effect on the body is, naturally, cumulative. Other side effects have started to embed – more on that another time. No matter – we’re just going with the flow – all is absolutely FINE.

My session was a morning one last week – it was to be a sprightly 10am start. We’re a little more prepared, in that, I’ve added a scarf and puffa jacket to my bag to combat the effects of the angle-poise cold cap (it’s a glorious sunny day, but minus 20 degrees on your head is minus 20 – and we were minus the proper body warming aids last time). I’ve also decided to spend the 6 hours on the bed rather than in ‘the chair’. This was because I got pretty spaced out and sleepy the first time, and frankly, with all that kit on your head and face, and my naturally gesticulating arms pinned down with lines and wires, conversation options are pretty limited.

In I snuggle. My carer takes his place in a chair (not ‘the chair’ – he won’t even take a paracetamol, so expecting him to do empathetic FEC with me doesn’t seem very likely). Again, for the upside/good fortune list, we’re lucky that he can be with me and still work – so he’s all settled, laptop whirring, list of conference calls ready that he can just duck out and do. We’re good.

Step one is to take an anti-sickness pre-med, after which we need to wait an hour for the main FEC infusion to start pumping intravenously. It’s the only oral medication I have to take on hospital day (aside from random pain relief if needed) but by god, it’s enormous – a whacking great horse pill. The carer says I look like a contestant on I’m a Celebrity doing the Bush Tucker Trial getting this thing to go in, and stay in, so between the gagging, heaving and regurgitating, we’re up to 10/10 on the laughter front in no time.

Once we’ve established that the tablet is staying put, there’s still time to kill, so I flip the TV on. Beaming Philip and Holly appear. A low but audible tut escapes from the carer’s lips and he shuffles his chair away from any risk of seeing the TV screen – but he’s back into his Excel like a rat up a drainpipe and well, we’re happy.

Philip and Holly are trilling away about what’s coming up on today’s show (can’t wait for the bit on how to make healthy chicken nuggets using ground red lentils in place of breadcrumbs – bleeeuuuchh!). Gradually, I notice the clunk of a faulty trolley castor, making its way down the corridor. This place is trolley-central – like Tesco on a Saturday – hundreds of them, fully-loaded, missioned in different directions. But this one is different….because as it gets closer, it’s releasing essential oils and it seems to be singing. This can only mean one thing. “Good morrrrrning darling!!!”

Carer throws his laptop on the floor, glues himself to the TV and starts taking notes from Holly about how many lentils to bung in the food processor. He’s not risking it this time.

“Remember me???” says Marion, as beautifully coiffed and faultlessly feline as last time.

“150g seems a like a lot”, mutters carer at the telly.

“What are we having today darling?” purrs M.

Well, I had thought about this in advance. Someone had suggested that a spot of reflexology would make a relaxing start to proceedings, and I know it’s on Marion’s list of delights. I suggest it.

The cat eyes lower.

“We can’t darling. Remember! Today, WE are INFUSING!!!”

We, I think? Oh no Marion, please – don’t tell me you’ve got it as well you poor cow, and you’re working; are you porting your own FEC around the place, rigged up to you underneath that pile of whale music CDs and putting on a cheery face while you treat others? Honestly, the bravery of some people.

“When we are INFUSING darling, we need to keep the pathways clear. Reflexology may interfere with your pathways. How about a light foot massage?” I decide to have a think about it and let her know later. She’s gone in a whoosh of lavender, off to infuse somebody else.

The next clunk, or clunks rather, are the trolleys bringing in the angle poise, the drip stand and the machines; it’s time to get going.

I get rigged up with the cap (funny: doesn’t seem to have got any warmer since last time?? And has it shrunk in the wash?), and hooked up to the machines via my PICC. For the first time, I see the tray of syringes containing the saline, the three pre-meds, then the F, the E and the C, which get fed into me in sequence via the drip over the hours to come. It’s because I have changed position – from bed height, I can see more. I consider the wisdom of this for future sessions.

Off we go and it’s fairly uneventful. Each infusion is loaded in turn; a timer is set; the nurse goes away and comes back when I start beeping, to load the next one.

Now, I know it’s a while since my writings on Parp Gate, but please do not think such matters have dispersed (would that they had!). Move-it-All is still very much doing its thing.

That, coupled with a diligent intake of 3 litres of water a day (plus a pint of Lavazza that morning prior to arrival) mean that being pinned to a bed attached to things is slightly limiting when nature calls…which she does, an awful lot these days. If I want to go to the loo, I need help – and I have to get the timing right. I can drag my drip stand in with me – it comes in like a faithful dog to heel, the machines switched to battery mode so FEC can keep on FECcing. But with the cap – well – there is a time limit. The nurse has to disconnect the head pipe from its power source at the wall so you wobble off like a discombobulated Telly Tubby (La La my arse! I’m much more Po lately!), rubber tubes flapping from the top of the scrum cap. You can only have up to ten minutes off power – otherwise the cold won’t hold in the cap – and the follicles will start to give in.

It’s an operation run with military precision. I assess the optimum time for the visit (the point where I am utterly convinced all procedures will be executed); let the nurse know ‘it’s time’; and away we go. First step, still fully attached: get myself into a standing position and face the direction of the bathroom. The door is opened for me, the light is on. The anticipation is building – I’m like One for Arthur, skittish on the blocks at Aintree, eager to get off and away. Next: switch the FEC dispenser to battery mode and free up the drip stand. Done. Finally – disconnect the cold cap from the power source and put the stopwatch on. I’m off! Hysteria doesn’t even come close – I’m humming old Benny Hill tunes out loud as a pace setter as I leg it into the loo, get the various deeds done, anti-bac myself up and peg it back to base to get re-connected. We have to do this about four times during these sessions – I plan to make an Olympic sport of it. Watch out Beijing, here I come.

Soon, lunch arrives. On this day only each cycle, I’ve told myself I can have whatever I want to eat, regardless of how good or bad it is for me. Goodbye kale, hello lard! I did toy with the idea of a spinach and tuna salad but the beef stroganoff and fruit crumble with ice-cream slightly nudged it. Having scoffed the lot (it takes time, which is annoying; the tightness of the scrum cap’s chin strap limits your jaw movement), I lay back for a snooze under my puffa jacket and some extra blankets which have been kindly delivered.

Alas, Move-it-All waits for no man. As I doze off, I’m vaguely aware that the carer has opened the window wide, and in fact, all doors and windows in the immediate vicinity have either been set, or possibly blasted, free. Oh dear.

My machine starts beeping and in rushes Nurse R, who is about my daughter’s age, and with whom I always have a good laugh. As with Parp Gate #1, I decide to head the awkward convo off at the pass.

“Does it smell a bit?” I venture, knowing the answer full well.

“Well, um, there is a sort of smell I suppose,” says R, very professionally.

“Smell?” says the carer, lifting his head from the laptop. “It’s like a bloody sewage plant in here!”

Then, of course, we’re all laughing our heads off, crying in fact, R trying to remain professional and us telling her not to worry about it. She’s still laughing as she heads off down the corridor, and I’m very glad she is – unless she’s heading to the nurses’ station with a resignation letter, that is.

The day is drawing to a close. It’s been busy on the ward – too few nurses for the number of patients, rushing around with trolleys to make sure each person gets what they need, and when. They are amazing.

We all have different infusion lengths as we’re not all having the same chemo for the same cancer, but today, it seems that we’re all due to finish at roughly the same time. Final machine beeps start pinging in every direction; it’s a like a hundred kitchen timers all going off at once. So either I’m in the final of Masterchef or we’ve all opted to be soft-boiled, and we’re ready to come out.  My final beep is definitely my favourite, as it heralds the removal of the cold cap, which you keep on for a further 90 minutes after the infusion. We’ve played the ‘guess how long now’ game, and I must say, this time, it has been pretty uncomfortable so the moment cannot come too soon. Oh for those warm head towels! I can hardly wait. We’ve even managed to get to the second of the afternoon’s Escape the Countrys, but today, the novelty had definitely worn off.

Trouble is, with so many in, it cannot work that way, and that is fine. It’s a priority thing, and I’m often (gratefully) on the top of that list. It’s another 20 minutes before someone can come and take the cap off, which is a short time in the scheme of things. The moment comes, the warm towels are on, and I am in heaven.

And with that complete, look at the other, pretty major upside? That’s two cycles down now, which means only four to go – this is easy peasy, and I really do mean that.

Back at home, I’m straight to bed. Not wanting to squander a moment of the ‘you can have whatever you want to eat on this day only in the cycle’ day,  my carer brings me baked crinkly oven chips covered in grated extra mature cheddar, with vinegar and tomato ketchup. The whole lot disappears and I’m into the land of nod, doubtless gassing the place out.

The kale can wait ‘til tomorrow.

Enjoy the beautiful sunshine all – it’s going to be a fantastic day. Pip pip (beep beep) for now.  J