9 January 2024

‘And this is the confidence that we have in him, that, if we ask any thing according to his will, he heareth us’ John 5:14

Chemo crash is so last year: I have entered into a Mexican standoff with it, determined that I will not allow myself to be rendered comatose on the sofa. Time is too precious for that.

Unfortunately my legs have other ideas, resembling those of an inflatable tube man being waved at a festival, but I’m trying my best to ignore them and crack on with the soup making, music editing and exercise- all of which are a huge effort but stimulating and rewarding compared with watching daytime TV through half closed eyes…

When you first enter a situation like this, life as you know it stops in its tracks and you are plunged into an alien and unwelcome world, taken over by appointments, tests, procedures, drugs- not to mention shock, worry and sadness. And then you realise after a while that this is not going to end anytime soon and that normal life can and must carry on. As well as the rebellion against chemo crash I am trying out some teaching this week- just a small number of my older home pupils to see how it goes. First lesson yesterday evening was fab- I had wondered if my brain would be up to it but I needn’t have worried: the lesson was every bit as packed and fast-paced as usual, balanced with lots of work on musical detail. Afterwards I felt happy and fulfilled, and the concentration required had firmly removed all thoughts of anything else.

Composing has always been the ultimate way for me to entirely lose myself, much to the annoyance of those around me. After an amazing but rather stressful couple of years completing an MA in Composition in my thirties and being answerable to scary conductors who would shout if a single dynamic marking was missing from the score, I made the decision that I would only compose when totally inspired to do so rather then at the request of anyone else. What this means in practice is that one minute I can be cooking the dinner and the next it will be burning on the hob as ‘I just need to quickly write this down’ (translated ‘I am about to cocoon myself in a composing bubble for an indefinite amount of time so approach with caution, don’t expect me to reply to you and certainly don’t mention dinner’). I remember once when our eldest three children were very tiny, maybe 5, 3 and 1- it was a cold winter’s day and had taken me a while to reach the point where all three children were stood at the front door wrapped up in coats, hats and gloves ready to go out. I hadn’t been thinking at all about music, or composing, but suddenly a fully-formed idea popped into my head and I found myself telling the children to wait by the door for a moment while I ran to the piano. Half an hour later and I had written a whole piece: no idea what it was now but pretty sure it was a good one, totally unappreciated of course by the confused and abandoned toddlers at the front door.

After the success of yesterday’s piano lesson it occured to me that if teaching is a good focus and distraction, then composing could be even more so. I thus started work on a song I have been planning to add to my Easter cantata before publishing it, and my brain is now happily swimming with lyrics and melodies. Good luck talking to me… and dinner isn’t guaranteed…

Speaking about food, Nurse Becca told me before Christmas that she has never seen anyone put on weight whilst having chemo- challenge accepted, Becca! Now that we have a definitive eating plan (plant-based except for weekly white meat/fish), then the quest to restore the missing pounds can begin. About 17 of them, actually… Basically that means I need to be eating constantly, which sounds like fun unless you are vegan and sugar-free… so a piece of toast with Marmite has become a morning post-smoothie staple (don’t get too excited, I’m having it with avocado oil which is nowhere near as luxurious as butter. Plus it doesn’t actually spread..). Other things featuring in my Smorgasbord of snacks are nuts, dark chocolate, fruit and homemade protein bars. Not sounding so bad now I guess…if only the leftover Christmas cake wasn’t taunting me smugly every time I walk past… What helps here are the constant news headlines that have been flooding the press recently. ‘Diet and exercise may change cancer outcomes!’ they scream, ‘Doctors looking into it!’ ‘Slowly!’ (Ok so I added that bit).

I’ve decided to save the fish/white meat for weekends- a good way to differentiate from weekdays in the absence of Wine O’Clock (I did try replacing this with Fenugreek Water O’Clock but it just didn’t have the same ring to it. And any mention of the word ‘spirulina’ is enough to send me reaching for a bucket nowadays, so the Kermit green cocktails are no more (if anyone can make use of a sack of finest organic spirulina do shout..).

This weekend we made the best meal ever- homemade fish and chips fried in plant oil (Sunflower and veg oils are strictly off the cards due to their processing techniques). And a fabulous chicken roast on Sunday; totally delicious comfort food which helped the scales creep up just a bit. Why this obsession with weight? Surely every woman wants to be a size zero, right? Not if she wants the full chemo dose prescribed by her consultant…

I will finish with some positive news after receiving my enhanced blood test results from the COC, which will be used to precisely tailor the medication of the repurposed drugs. My liver function readings are incredibly all now entirely normal which is staggering given that they were off the scale in October. And my CRP marker, which originally signified serious inflammation at well over 100, is now 0.25, falling easily into the normal range of 0-3. This doesn’t reflect everything that is going on of course, but does give a picture that my body is coping with everything and even managing to heal in places. I have a sharp stitch-like pain in my abdomen which is bothering me today so I’m hoping that’s just a niggle: as you can imagine, every new symptom gives cause for wondering and concern but we are doing our very best to remain calm and full of hope and trust. God has carried us through such a difficult time so far- at one point last year I was told I may only have ‘weeks to months’ to live, but we have had so many happy times since then, resting in Him, who does all things perfectly.

‘And be not conformed to this world: but be ye transformed by the renewing of your mind, that ye may prove what is that good, and acceptable, and perfect, will of God.’

Romans 12:2