22 June 2024

‘Every good gift and every perfect gift is from above, and cometh down from the Father of lights, with whom is no variableness, neither shadow of turning.’ James 1:17

Herewith a little diary of the last few days…

19 June 2024

What a day! It kicked off bright and early with the first of Isaac’s 2 performances of Shrek, his Year 6 production. The girls and little Jasper came along: Jasper sat entirely still and quiet throughout the performance, mainly because he was terrified by the louder parts of the action… The children were all wonderful and it was a delight to see how confident and expressive Isaac was on the stage, given that drama is not really his thing. As with anything I get to see, do or experience at the moment, I was filled with a deep gratitude and joy, knowing that I may well not have made it this far. Everything- everything- is a gift.

After the show, I had a very special mission to complete: a visit to St Joseph’s in the Park to see the children and staff and to finally collect my things. I left so suddenly last October that I wasn’t able to sort my teaching materials out and pack them up. I have been wanting to go back for ages but it just hadn’t worked out for various reasons; with only a few weeks until the end of the school year I knew I had to take the opportunity today.

And so I embarked on the short, familiar commute from Heath Mount to St Joe’s that I had driven for so many years, every turn and feature exactly the same. For a split second again it was early on a Monday morning and choir, assembly and violin pupils were awaiting me… and then reality hit and I was aware of the empty suitcase in the boot of the car that I would be taking into school, years of teaching to be condensed into a hand luggage carry-on… How would Crescendo Cat cope, I wondered, cruelly lifted from the only home he has has ever known? I resolved to introduce him to Purple Care Bear, also a newcomer round here, and to give him a prime spot in my music room from which he can enjoy all of the wonderful music that happens every day. Crescendo Cat must have been lonely for the last 8 months anyway, with no children singing and playing to him…

How can everything and nothing be the same? The long, tree-lined driveway, the swimming pool decorated with flags for the summer galas, the cows peacefully grazing in the field; all innocently there as if nothing had happened and no time had passed. But it had. I sat in the car park attempting to compose myself as a wave of emotion overcame me. Come on, woman, no tears, this is going to be lovely, I chided myself.

And it was, of course. I was given the warmest, kindest welcome, with staff flocking to see me in a never-ending stream. And the children, inches taller than last year, their faces lighting up with surprise and delight when they saw me and their arms wrapping around me in hugs.

‘Mrs Jellett, we’ve missed you so much!’

‘When we found out you had cancer we all cried…’

‘Are you coming back, Mrs Jellett?’

I was invited to stay for lunch and I remembered what I had loved so much about working in a school: the busyness, the energy, the joy, the shared experience with colleagues. Teaching from home is wonderful, relaxing and more than rewarding. But working in a school and being a part of that whole is something special. I’m so glad to have had that experience. Not to mention those school puddings… I simply had to indulge in a nostalgic bowl of fruit crumble and custard before making my way up to the music room.

The sorting and packing didn’t take as long as I thought: many things were better left for others to benefit from. Even most of the stuff I was bringing home would probably be passed on to teacher friends.

All done, I took one last slow walk around the room that had been my home for 14 years, thinking back to everything that had taken place there: joyful Pre-School and infant lessons full of noise and colour, Little Violin Club in which I tamed teeny 5 year-olds to hold a violin and bow and even play the thing, the cacophony of orchestra that somehow turned into beautiful music just in time for concert performances, Music Theory Club with its crazy team games, races and sweet prizes, Crescendo Choir for the youngest singers and The Park Choir for the eldest, at whom I threw everything from Rutter and Franck to jazz and Jellett… If I had to sum up 14 years in that room in one word, it would be ‘energy’. From myself as much as the children…even in my very last choir sessions, when I was carrying around a huge and painful abdomen, I leaped as high as the children in our much-loved Funky Chicken warm up…

And now everything was still and silent. I was taken aback at the sight of the single suitcase stood in the middle of the hollow, empty music room and almost took a heart-wrenching picture of it for the blog (cue slightly out of tune beginner violins). But no. I gave myself another stern talking-to: each chapter must end for the next to begin.

And it’s a great chapter, cancer aside… I no longer get that Sunday evening feeling where your whole body feels the weight of the impending week. Or that dauntedness upon waking on a Monday and thinking through the impending day ahead: the million things to be packed into the car; the hours-long one-woman show to be performed without interval or stage hands, every scene change from choirs to violin lessons to orchestra executed in seconds; the home lessons to be taught minutes after returning from work; the school run, dinner cooking, evening teaching… (Is it any wonder I still function best on a tight schedule..?)

My Mondays look very different now; I get to enjoy the company of Marvellous Monday Judy, our activities having progressed very nicely from Judy driving me to blood tests and appointments when I was very unwell, to us enjoying walks, cafés and hot tubs. We are plotting a spa visit for next week (you didn’t hear that, Chemo Crash).

Furthermore, I had always wished I could go to the Monday walking group organised by fab friend Emma, and now I can. I walked with them last week for the first time, loving being introduced to undiscovered parts of the countryside on my doorstep and marvelling at how quickly the time and kilometres pass when you are chatting. I resolved to join the group every other week; surely it would be mad to try when in the throes of Chemo Crash… or would it?

Despite my bold attempt to dismiss the impending crash last Friday (who was I trying to kid?), it merely laughed at me and took me down with one swoop of its vicious scythe. Sunday was the worst: on top of the usual weakness, every inch of my skin was sore and I had a headache to rival the fiercest migraine. I woke on Monday feeling better, but rather weak and battered. It was a beautiful morning though, with full sun and deep blue skies. I wanted to be outside and I wanted to be with people. I would do the walk, all 7K of it.

It was hard- at the beginning my legs were screaming at me: ‘Have you lost the plot, woman? We can’t do this!’. But I ignored their grumblings, and these soon changed into a silent sulk. After a few kilometres I was bouncing along and chatting away without having to catch my breath. A definite victory, and one which buoyed me up for the rest of the day, allowing me to teach all 3 piano lessons: on the same day in the previous cycle two weeks ago, I had to cancel them. Choose hard, and you will be rewarded: try it.

So, back to Wednesday and St Joe’s… I walked to the car park taking everything in for one last time, then drove away with a heart that was heavy with mixed emotions: a lot of sadness but also a sense of completion and appreciation of what I have right now, however long this chapter- the final one in my story- might be.

20 June 2024

Talking about crazy, scheduled-to-the-minute days: this was happily one of those. A shower, oxygen and breakfast was followed by the appearance of one rather cute little toddler: Jasper was spending the day here so Lydia could travel to Bournemouth for her final wedding dress fitting (she found The Dress in a lovely boutique near Cloud 9). It was another beautiful sunny morning and Jasper and I played in the garden, endlessly rotating between football, the trampoline and the sandpit. Jasper chatted away happily, telling me exactly what he wanted: ‘Mimi come on dampoline… Mimi take a flip flops off’.

Ariane then appeared for her Jasper shift, which allowed me to dash to the shops to get supplies for the busy next few days, then a power walk around the fields with Helen, a lovely village friend who I have known for years.

Lunch, a nap for Jasper and a flop for me (I do stop sometimes), some more playtime and all too soon Jasper is collected so that I can log into my usual bi-weekly appointment with SuperProf.

These meetings are rarely just routine or a formality, however, and I always feel a certain amount of trepidation beforehand. What will the blood results have shown? What will those tumour marker numbers be? Will Prof be happy to continue with the treatment?

Happily it was another positive appointment. My CEA has decreased again and is now 39: a psychological triumph as this is the first time it has been lower than my inital reading of 40 last October. SuperProf is going to reduce the dose of Oxaliplatin so that further neuropathy damage is minimised and I can stay on the drug for longer. ‘Longer’ is a good word in this game… Plus, the Oxi is the criminal mastermind behind the chemo crash and so less Oxi should mean… less crash! Maybe…Hopefully…watch this space…

This week I came across an interesting study claiming that a combination of hyperbaric oxygen therapy and melatonin has striking cancer-killing benefits in bowel cancer patients (ok, mice…). As I’m doing oxygen twice a day already plus also having help with sleeping, I wondered if I may as well try taking melatonin for the sleep and perhaps kill 2 birds – or maybe even a nest of birds- with one stone… I was slightly nervous asking SuperProf about this as we picked up very early on that he doesn’t believe in any of the more alternative things; he is committed to his area of science and is exceptionally good at it, the results speaking for themselves. However, Prof has stated himself in his writing and in a video for Cancer Research that sadly no new treatments for metastatic bowel cancer have been developed for years, and the overall prognosis is still very poor. The scientists have clearly hit a wall, which one day may come tumbling triumphantly down but for now is standing more than firm. So the only things that can be tried fall into the alternative, experimental camp. And there are enough very clever, highly-regarded medics believing in this stuff to make it more than a crazy whim: Doc Brains, for example, with the repurposed drugs that he feels will be the future of cancer treatment, and Doc Mistletoe at UCLH…

At least SuperProf is happy to humour me and allow me to try anything that won’t jeapordise his Big Guns. He said I can ask my GP to prescribe melatonin if I’d like to give it a go. I haven’t seen Doc McLovely for months; this will be a good reason to schedule a catch-up. I imagine that she won’t hesitate to give me the drug, and my own little scientific experiment can begin…

22 June 2024

Yes, we are at Cloud 9 again this weekend for THE LAST TIME BEFORE THE WEDDING (just saying). Michael and girlfriend Katy have come with us, and we have lovely things planned: lunch on the seafront, beach, paddleboard, seeing family. Tomorrow Isaac is playing a big, exciting flute duet in Poole and I’m so looking forward to hearing it. I don’t care that I can’t feel my fingers or feet. I don’t care (much) that the ulcers on my my tongue make it feel like feels like it has been sliced with a very sharp knife. I don’t care that my legs protest when I walk up stairs. I feel well, I am full of energy, I have HAIR, and I am overwhelmingly thankful to be here and doing all of these things with people that I love. Have a great weekend, everyone (PS if you are in Herts and wondering where the sun is, it’s here in Dorset. Sorry.)

‘The Lord bless thee, and keep thee: The Lord make his face shine upon thee, and be gracious unto thee. The Lord lift up his countenance upon thee, and give thee peace.’ Numbers 6:24-26