18 March 2024

‘For whosoever will save his life shall lose it: and whosoever will lose his life for my sake shall find it.’ Matthew 16:25

Another blog so soon? Well what else am I going to do in my oxygen chamber? Besides, things change so quickly at the moment that I need to write it all down in order to keep up…

As you may recall, the previous post ended on a little high…. However it seems that my perking up on Saturday was just my body having a little fun and luring me into a false sense of security (either that or Bournemouth’s best Jerk Chicken has some magic ingredient, quite possible). For Sunday saw the arrival of Proper Big Girl Chemo Crash and it wasn’t pretty at all. It is hard to describe, but imagine your whole insides have been sucked out by a very effective Dyson and there is nothing holding you together any more… I was determined to get to the sea in the afternoon, however, and made it a short way down the ramp before collapsing on a bench with Steve whilst his parents continued down to the beach with Isaac. I was in such a bad way that I received concerned looks from every passer-by (‘it’s because you look like you are on heroin,’ Steve helpfully explained), but I didn’t care a jot as I was so happy to be able to watch the waves from afar and feel the sea breeze on my face.

Getting back to Hertfordshire in the evening seemed like an insurmountable task but Steve took control of everything- the packing, the driving, Isaac- and deposited me in the oxygen tent as soon as we got home, where I promptly feel asleep.

The night would have been a good one if it hadn’t been for the 1.30 a.m. recreation of the Texas Chainsaw Massacre… No, Steve had not flipped out, having finally had enough of everything and deciding to finish me off rather more quickly- instead the culprit was my nose which exploded like a small volcano as I slept, showering the white sheets with an alarming amount of red. To be fair the real villain here was the drug Avastin, which thins the blood significantly and can result in sudden nose bleeds. Just not usually at night… Scientist Steve sprung into action and talked me through how to stop it; I can’t say that I was the most willing and compliant student at that hour, but as always Steve was right and the lava flow eventually ceased…

If I thought that yesterday’s crash was bad, it was a mere warm-up act for today’s headline act; I wish I was saying that just for the drama of it, but I’m not. For most of the day I was like a puppet, only moving when my strings were forcibly pulled by Steve in his attempts to get me upright or consume some food and drink. I was so distressed and worried that I emailed Kristine the nurse. She quickly replied that this is par for the course given the number of drugs I am now on, telling me not to worry but to focus on drinking fluids and continuing with my everyday chores. What?? Chores?? But of course I didn’t want to feel a failure and can never resist a challenge, so with a superhuman effort I shuffled to the kitchen and proceeded to clear up the breakfast things: slowly, painstakingly, determinedly. To my surprise I was still alive at the end of it and it had given me the needed psychological boost to no longer feel entirely useless.

‘Choose hard’ is indeed my new motto: I have adopted this from an amazing lady that I follow on Instagram. She is a 34 year-old mother of 3 young children who since being diagnosed with incurable cancer has started training for triathlons, ‘choosing hard’ even if she doesn’t feel up to it. So tomorrow I will choose hard and attempt to do the things I really want to do instead of sitting at home feeling sorry for myself: I shall go to Isaac’s Easter Service and on to little Jasper’s swimming lesson.

After my kitchen triumph I managed to work on my project for the children and and also felt mentally strong and calm enough to refine my funeral plans. I don’t know if it’s normal to plan your own funeral down to the tiniest detail but it is important to me as an experienced control freak, plus I don’t want anyone else to shoulder that burden. How many funerals wil include a world premiere performance of a choral piece? (Ok so the Queen’s for one; drat, she got there first).

Somehow I also had the wherewithal to add to my Lists for Steve: these detail the tiny but very important things that husbands just don’t have room or inclination for in their brains such as the dates of family members’ birthdays and where to buy your child’s underpants and jeans (Next Super Skinny, NOT Slim Fit or just Skinny).

How can I write about this so matter-of-factly? Don’t get me wrong, focusing on these things is heartwrenching and almost always accompanied by tears, but Steve and I are feeling a new calm acceptance and even happiness which has certainly not come from ourselves. When we were were at the start of all this there seemed a world of possibilities and outcomes depsite the paper diagnosis: perhaps my cancer would respond unusually well to treatment, or perhaps the alternative remedies that have done amazing things for others would also be our way out of this. But at every turn things have been ‘worse’ than they might: the progression everywhere despite an apparently good response to chemo, the rare genetic variations, the resulting limited treatments available. So with God’s help we have accepted that ‘worse’ can mean ‘best’: for the joy waiting in eternity is far, far better than anything this world can offer.

It was just a Monday evening, but it was the strangest and most magical time. I had cancelled my lessons earlier in the day as there was no way that I would have been able to physically or mentally do them justice. Instead we talked, Steve and I, about the future, about realities, but in the nicest and happiest way. We both know that it’s going to be ok. And then Isaac was practising the top part of a piano duet, a lovely arrangement of Pachelbel’s Canon, and I instinctively sat down next to him and joined in with the lower part. Afterwards, Isaac gave me the biggest hugs ever, so lovely and full of meaning. He knows.

Playing the piano awakened something unexpected in me. Earlier in the day, Steve told me that what he would really love is to hear me play a piece again that had been so pivotal in my early musical journey: Chopin’s Waltz in C Sharp Minor. I am largely self-taught as a pianist, not having a musical background and fighting at every point to get to where I knew I wanted to be. When I was really just starting out I heard the Chopin waltz on a record (yes, I’m that old) and was determined to learn it note by note, sharp by sharp, even though it was an advanced piece and my (not very inspiring) teacher at the time had me ploughing through beginner’s repertoire. I smashed it, working for several hours a day until the waltz flew off my fingers. I was also totally in love and my future as a musician was secured. However, when Steve asked me to play it again today, I shook my head strongly, sure that it would be impossible and only emphasise my inevitable current lack of co-ordination and general overall uselessness. But after the duet with Isaac I found myself being drawn to the music cupboard and pulling out the folder labelled ‘Romantic Music’ (as in the period of musical history, not the lovey-dovey stuff). Surely my old book of Chopin waltzes wouldn’t be there; I’ve lost count of the amount of times that I’ve tidied out that cupboard… but it came into my hand instantly, the first book I selected. Well, a little try couldn’t hurt, even just to prove to Steve that unfortunately it wasn’t possible and maybe I could play him something easier instead.

To my utter astonishment, my fingers settled into the notes almost immediately and I was transported back to my teenage practise room; a slow, measured tempo at first but before long the music took on the whirl and dance of the waltz. Joy doesn’t come close.

So we reach another high, and I have a feeling that this one is here to stay. We have relaxed about so many things; the food for one, my tummy stating quite firmly that wet green stuff is absolutely off the cards and seizing up painfully if I so much as show it a bowl of vegetables. I’m going to need to work with my body rather than imposing things on it if I’m going to build strength, or at least maintain it. So a food rethink beckons, with an emphasis on healthy but drier fare- ideas most welcome!

‘There will be times for tears, but there will never be times for despair. There will be circumstances that bewilder us, but there are none that need to overthrow us. Many events will drive us to our knees in prayer, but that, in itself, is good, and even those events have been knitted together by the Sovereign to bring about a wealth of glory for His people that far surpasses the worst suffering of any saint of God.’ Joe Terrell.