14 June 2024

‘Fight the good fight of faith, lay hold on eternal life, whereunto thou art also called, and hast professed a good profession before many witnesses.’ 1 Timothy 6:12

8 month cancerversary yesterday! Time is really flying considering that I’m not actually doing that much. Well, apart from teaching, shopping, planning meals, cooking, washing, hoovering, dusting, school runs, long walks, seeing friends, transcribing music, supervising homework and music practice… Ok I’m busy, and happily so I’m delighted to be able to do these things, most of which are for the benefit of other people and that is exactly how I want it to be.

Yesterday evening I had the absolute pleasure and treat of being invited to watch two of my lovely ex-pupils perform in a production of The Secret Garden at the wonderful Roman Amphitheatre in St Albans. Well it would have been truly wonderful if the rain hadn’t been pouring down: we the audience had come fully prepared in layers of winter clothes topped with rainwear, but by the interval the stage was slipperier than an ice rink and the poor actors were on the brink of hypothermia… it had to be abandoned. This British ‘summer’ is leaving a lot to be desired…

But whilst I was gutted for the performers who desperately wanted the whole show to go ahead, I was totally captivated and satisfied with the first half; it was a beautiful production and my ex-pupils shone like stars. Alice, the elder sister, was playing the lead role of Mary; as I watched this beautiful, confident 15 year-old light up the stage I thought back to Alice aged 3 in her first pre-school music classes with me, remembering her earnest eyes, quiet voice and slightly straggly hair. And then Alice starting violin at 5, first in a little group and then one-to-one with me throughout the rest of her Primary days. In Alice’s last year she wanted to try singing lessons and so I helped her take her first steps in this direction, developing that small voice and working on pitching. Fast forward five years and I am blown away by her strong, sweet solo and voice that soars above the rest in the group number.

How special are those times a music teacher gets, witnessing so much of a childhood before their eyes and being a constant in that child’s life when in other subjects they move from teacher to teacher each year. And it is always extra-wonderful when families who move on keep in touch and I get to see the next part of their stories. Particularly now, in my situation, as it emphasises how much I have done over the years that has been worthwhile and made a difference to other people’s lives. I had a second similarly-themed treat today when I was suprised by one of my very first pupils, now 25 and studying medicine, appearing at the front door at the end of her mum’s piano lesson. It was so very special to see Tilly and to be assured that she valued her years of lessons and time with me so very much, as I did in return.

Anyway, back to the Secret Garden… There is a character called Colin which has been shut away in a room for years as he is told that he is considered to sickly to have a normal childhood. One of Colin’s lines in the play really struck me:

‘They tell me I’m dying- but I want to live! I want to live!’

My thoughts echo these entirely… however not quite in the way you might assume. I want to live – but to live with what I’ve been given in the best way possible, which means becoming as strong as I can in order to cope with treatment and have as many good days and months as possible, filling these with normal things which become special things simply because I’m able to do them.

I want to live as well as I can so my 10 year-old has his Mummy for as long as possible, so Steve has his wife, so our older 3 have their Mum and little Jasper his Mimi. So my Mum has her daughter, my mother-in-law her daughter-in-law…. I could go on. I want to live for them.

Yes of course if I was miraculously cured (and it could only be miraculously) I would be over the moon, no kidding!!! But I’m not grasping desperately for that: whatever happens will be entirely God’s will and it will be perfect.

Plus, what does ‘I want to live’ mean? ‘I want to live so I can die when I have more years under my belt?’ In this broken world that is only heading in one direction? Or ‘I want to truly live, free from trials, sadness, strife, pain?’ This is how Heaven is described in the last book of the Bible:

‘And God shall wipe away all tears from their eyes, and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain; for the former things are passed away.’ Revelation 21:4

No more death- this is true life! The Apostle Paul was one of the few people granted an actual glimpse of Heaven. He described it as ‘far better’ than anything this world can offer, wanting to be there so very much but also being aware of his responsibilities on Earth and how much he was needed.

‘For I am in a strait betwixt two, having a desire to depart, and to be with Christ; which is far better: Nevertheless to abide in the flesh is more needful for you.’ Phillippians 1:23-24

I feel so very much like Paul at the moment.

Anyhow, musings over; here’s a little report on last weekend, Birmingham NCO jaunt #2….

Although the schedule for the weekend and our hotel were identical to March’s trip, it felt very different. We didn’t need Rick Astley gracing us with his fine presence or to sit on the loo seat used by Pavarotti, for new experiences awaited: we were given a room in the 13th Century main building which was very exciting and transported us back in time:

Steve nurturing a glass of non-Medieval red…

The hotel grounds had come to life in the almost-summer and it was wonderful to walk around in the evening sun with Isaac, trying a bit of pitch and putt and enjoying the trees, flowers and wildlife.

This went badly. We spent more time hunting for lost balls in the long grass than we did hitting them, but great fun all the same.

When Isaac was busy rehearsing in the daytime, Steve and I walked. And walked. And walked. A total of 25K over the 2 days, would you believe? And still had time to hang out in the spa (the steam room finally sorted my nose which had remained entirely blocked following last Thursday’s blood bath), and even to enjoy a Pimms in the hotel garden:

Hmm that didn’t last long…

Sunday’s NCO concert was fab; Isaac retained his role of Principal Flute and got to play the piccolo parts, his shrill silvery tones soaring above the orchestra in the famous Carmen overture. To be honest there wasn’t much to challenge and stretch him this time but he had so much fun and made loads of musical friends. In 2025 Isaac will be old enough fot the next NCO stage, which consists of two 8-day residential courses and would be amazing for him- but we’ve taken the decision not to apply; we can’t think about next year and certainly not about sending him away for 2 weeks… He will make the most of the wonderful orchestral experiences offered by the incredible Poole Society for Young Musicians instead.

We had the treat of Michael coming down from Manchester for a couple of nights on Monday and it was wonderful to have quiet, catching up time with him.

Of course it was back for more botomless cocktails of the chemo kind on Tuesday; I was so fired up from my huge amounts of daily walking and was disappointed that a London day would mean no walk… or would it? Wait a sec! I could walk from Kings Cross to Harley Street! Only just over 2K, but way better than nothing, particularly executed as a power walk… (which I had no choice about, because some numpty held up my already-delayed train by pulling the emergency cord when he missed his stop. I kid you not.)

The walk was a game-changer; I loved taking in the Bloomsbury back streets with their lovely architecture, playing ‘Frogger’ as I crossed roads dodging taxis (you have to be a certain age to remember that game..) and just feeling the London vibe. I did have to explain to the nurse why my heart rate was so high when it was taken on arrival (it was probably not a reason she’d heard before..).

I can’t say I relish the 6-hour days spent in a Harley Street basement but I try to be matter-of-fact about it and just get the job done, ticking off each stage: blood pressure, blood oxygen, heart rate, height, weight, urine test… vials of blood taken and rushed to the lab… waiting… waiting… inedible lunch… blood results, good to go… pre-meds (fluid/steroids), huge anti-sickness tablet…Drug no. 1 (Avastin immunotherapy), flush, ‘bee-sting’ injection to suppress tummy reaction to Irene (believe me, it is fairly accurately named: ‘very long and excruciating bee sting’ would be even more spot on)…Drug no 2 (Irene of course, officially Irinotecan- I give her a little pep talk as she enters my body: ‘Come on, Irene’)…another flush… Drug no.3 (Oxaliplatin with a side order of Folinic Acid)…flush again… and finally my pocket pump containing Drug no.4 5FU is connected and I am released, making my way through a ghost ward as the other patients are all long gone; I’m always the last.

No bus for me today- I do actually know which number to get now but have worked out that taking the tube is much better on the way home as the bus takes about a year to crawl its way through Euston. I left the hospital at 17.34 and thanks to more power walking down the endless tube corridors caught the 17.57 to Knebworth with a few minutes to spare, meaning that I arrived home to my lovely 3 boys earlier than I had expected. Brilliant. And further excitement was to come, for in my hospital party bag today was a pack of sleeping pills. This would be interesting: Steroids Vs Zopiclone (great name! Also fun fact: it’s banned in the US as considered too addictive…hmm..). At bedtime I chucked one back as if it was a shot of tequila and waited for the results. I was not disappointed. In fact within minutes the effects were pretty similar to those of a shot of tequila, and all for free! I staggered around the bedroom dramatically, showcasing my best not-drunken stupor.

‘Get into bed, you idiot…’ ordered Steve. I obeyed, and was rewarded with 7 hours’ sleep. Yes, 7! There was no 2 a.m. cupboard tidying or homemade fruit-cake craving (I had ingredients on standby just in case this time). The next day, I felt great and enjoyed a normal, busy day, ignoring the fact that the pump at my side was slowly filling me with more poison.

Thus brings us full circle to Thursday; a lovely day feeling good after another round of 7 hours’ sleep, gifting me the energy to throw myself into yet another power hike, three fast-paced piano lessons, skilled pump removal from Doc Steve, quick shower and out to the theatre for a wonderful evening despite the accompaniment of a rather more permanent shower. The crash was attempting to announce its imminent arrival, but Whatever Trevor- nothing I haven’t seen before so just you try to pin me down…

Today, Friday, was also happy and busy: I didn’t sit down once in spite of my weakening legs and sucked-out insides. Take that, Chemo Crash, and have a lovely weekend, all!

‘I am come that they might have life, and that they might have it more abundantly.’John 10:10


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5 thoughts on “14 June 2024”

  1. It was a pleasure to share the very wet evening with you xxx

    PS I remember Frogger… what about Chucky Egg??

  2. I read your blogs so quickly to see how you are and then I laughed out loud !
    The image of you staggering around trying out the effects of a sleeping pill compared to a tequila!
    I am surprised you didn’t fall asleep with a duster in your hand.

    What a wonderfully mixed week of thanks and hard treatments…and yes you are needed more down here at the mo! Your new name Colin P….😊❤️ keep up this amazing health work and enjoy that lovely family .🙏🙏 for your continued journey and strength xxx

    Wish you all a lovely weekend x

  3. What a great week!

    There’s a dad joke about walking……..at the age of 65 my grandma started walking 10k a day. She’s 92 now and we have no idea where she is!

    Have a good weekend.

    Sending love as always.

    Kay

    💜

    x

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