3 October 2024

‘Behold, I am the LORD, the God of all flesh: is there any thing too hard for me?‘ Jeremiah 32:27

Drama most definitely did not feature on my to-do-list today. I had lots of lovely, cosy things planned: early morning coffee and croissant with a wonderful friend to make exciting plans for a charity concert featuring many of the special musical people in my life (watch this space), then on to Isaac’s school Harvest Festival. After this I planned to pop to the shops to select ingredients for a grand ‘Bake Off’ day, preparing food in advance of my Mum coming to stay next week. Visions of homemade soup, lasagne and chicken pie danced in my head; the energy required to make them would be amply provided by the steroids. I wanted to get this done with their help and before chemo crash knocks at the door, or rather batters it down, in the next few days.

The best-laid plans…Instead, I find myself on a train bound for London… I awoke at 4.45 this morning and couldn’t get back to sleep despite my somewhat reckless mixing of Melatonin and Zopiclone last night (may have said I wouldn’t do that: the resolution lasted, well, no days. The steroids still win in the end anyway, as demonstrated by the early wake up…).

After about half an hour of lying awake with my thoughts for company, I became aware of a stream of liquid flowing across my tummy. Instinctively, I wiped my finger over it. Duh! Did I think for a moment that it could be anything other than a cytotoxic spill? Could a stream of water have jumped miraculously out of the glass by my bedside, finding its way to exact said spot on my skin? No…

‘Steve’ I called out with urgency. ‘Steve, I think I’ve got a leak…’

After a quick look and instant agreement, Steve jumped out of bed and into action. I think he’d secretly been looking forward to opening the mysterious bag labelled ‘Cytotoxic Spill Kit’ and featuring a skull and crossbones on the front (ok I made that bit up) that has sat unassumingly in our pile of medical supplies for the best part of a year now.

The contents were rather boring in the end- not a Hazmat suit in sight! Which is basically what Steve wears when he ventures into the potentially-asbestos-ridden Victorian loft space at Cloud 9, however, and I’m sure this situation is essentially more hazardous…

A large amount of plastic sheeting was pretty much the sum of things- purple in colour at least, I must add. Steve has always been good at plumbing and it didn’t take him long to determine the exact site of the leak- the screw fitting joining the chemo pump line to my port line was definitely not as tight as it should be. Last night as we were sitting watching TV (finally some good things on: enjoyed the BBC Young Musician quarter final with Isaac, which he adored, and then fab new BBC series Ludwig with Steve). Halfway through Ludwig I felt sudden excruciating pains coming from the needle in my port. I cried out loudly and Steve paused the TV. However, the pain instantly stopped. Perhaps the damage was done then, with the needle moving and stopping the chemo going in, instead forcing it out through a tiny gap in the screw. Maybe the nurse who first inserted the needle didn’t do it quite right- it did particularly hurt this time- or maybe the second nurse who attached the pump didn’t tighten the screws enough. Ot maybe, just maybe it had something to do with the weight training I did yesterday, not being able to resist including the arm exercises…

Anyhoo, a trip to Harley Street was required. ‘How soon can you come in?’ asked the doctor on the LOC out-of-hours emergency line. ‘Let me see,’ I mused, ‘Harvest will finish around 10, I can get the 10.42 train, walk to Harley Street and arrive by 12. Yes, 12 will be fine.’

‘Ok… if you’re sure that you can’t get here any sooner…’

I was perfectly sure. There was no way I was missing Isaac’s first time wearing his music scholar’s robe, singing in the choir and playing a beautiful piano solo to conclude the event. What’s a small cytotoxic burn compared to that? (I was sure that I only had one area of concern anyway, on my index finger where I had wiped the liquid. Steve had cleaned the main area of spill under my port dressing brilliantly and I had no signs of skin irritation.)

The LOC did not know this of course- well, not many people have a husband who can combine being both an amateur plumber and doctor. I was in the queue for the loo before the Harvest service when my phone rang. It was a doctor from the chemo ward.

‘We’re worried about you,’ she urged. ‘Can you please come in right away?’

‘Er, sorry, no,’ I related firmly. My little boy’s Harvest Festival is about to start and I don’t want to miss it. I’ll be in for 12.’

This did not go down too well and indeed I got a bit of a telling-off from the doctor when I arrived:

‘You actually should have come in at 6 a.m. as soon as you knew about the leak…’ she reprimanded me… and then saw Steve’s meticulous handiwork. ‘Oh… I see, that’s very well done, all clamped and sealed off, and no damage to the skin. Most people would have no idea how to do that.’ I informed her that my husband is not most people, and she got it… we had redeeemed ourselves.

The doc did convey, however, that all bedding and items of clothing have to be double washed as the chemicals will have travelled through the air. This was suprising… a liquid so toxic that it can lob invisible grenades around the room.. So we can look forward to a backlog of washing as well as cooking. Woo!

Bridesmaid Becca and I often exchange titbits of wisdom and postitive attitudes to life in our daily messages. One of Becca’s sayings that I love goes something like this:

‘Always try to turn disaster into opportunity’.

Where was the opportunity in today’s forced London jaunt? Easy. I would power walk the 5k round trip from Kings Cross to Harley Street, an awesome workout. And I would write my blog on the train and during any waiting time. And it’s not raining for once! Going to be a great day, all things considered. The cooking can wait.

My main concern, however, was not any logistical hassle but the fact that I had not received the full dose of 5FU (lovingly known as CFU…).

‘I’m afraid nothing will be able to be done about that.’ The out–of-hours doc had informed me. ‘They won’t be able to work out how much chemo you’ve had or lost.’

Oh really? Not the case, my friend: the docs are currently doing some complicated sums so the pharmacy can mix me a new concoction to be administered through a new pump and line. This is brilliant- yes, it means another day without being able to bath or shower (don’t get too near me..) BUT I will have close to the full dose of chemo, particularly important at the moment since everything is to be thoroughly under scrutiny from now on as the issue of surgery is considered. Also reassuring is the fact that I was told there was no way my enthusiastic weight-lifting could have contributed to the pump fail. Phew!

Onwards we go, after just a few extra and slightly nauseating loops on the rollercoaster. Let’s think about nicer things- music, for one… last weekend Isaac had the privilege of participating in a masterclass in Dorset with flute professor and principal flautist of the BBC National Orchestra of Wales, Matthew Featherstone. Matthew was the most lovely guy and connected so well with Isaac; it was such a pleasure to witness another very special musical moment and memory.

Finally, I shall leave you with the answers to the competition questions about my GCSE piano piece: happily I received quite a few replies which I loved reading. Here are the definitive answers:

1. The composers that influenced my writing were Mozart (for both the Theme and Variations structure and style of the first variation), Beethoven (for the chordal theme and some other bits) and Chopin, for the two waltz-like variations.

2. The mark I received was 97 percent. I wonder how I could have bagged the remaining 3 percent..? (Of course my now-experienced eye has some ideas…)

3. My favourite variation was no.2, the slow, expressive waltz in a minor key. G sharp minor, in fact, not a key that I imagine many teenagers getting excited about…

And the winners are… (team effort)… my parents-in-law, the wonderful and music-loving Allan and Christine Jellett! All of their answers were correct except for the mark awarded, which they estimated as 90. Harsh. But congratulations to them!

To keep any feelings of limbo at bay, we have decided to go back to Cloud 9 this weekend as well as for the big marathon the weekend after. That will be the crazy one, with a huge amount of family and friends coming down to either run or support. I can’t wait. But this weekend should be quiet and relaxing; I will appreciate the sea views and air no matter what chemo crash decides to throw at me. (Just no more drama, thank you…)

‘In thee, O Lord, do I put my trust; let me never be ashamed: deliver me in thy righteousness. Bow down thine ear to me; deliver me speedily: be thou my strong rock, for an house of defence to save me. For thou art my rock and my fortress; therefore for thy name’s sake lead me, and guide me. Pull me out of the net that they have laid privily for me: for thou art my strength.’ Psalm 31, 1-4