2 April 2024

4.15 a.m.: I’m lying awake listening to Steve’s heavy breathing next to me; I don’t want to wake him so am being as still as possible and keeping my phone under the covers. I’ve spent too long trying to sleep so have given up and decided to spend the time surfing the web with the intention of selecting my gravestone. As you do…I’m glad I look into it though as it is harder than I expect: I don’t fancy anything that I see on the first lot of websites that I visit. Everything is either too boring or too elaborate (think doves). I finally come across a company that allows you to design your own from scratch – this is more like it, rose pink granite here we come…I play around with options and then make a mental note to add the link to the Lists, which are growing ever-longer.

I’m awake because Ms. Chemo Crash and I have been embroiled in a duel for the last couple of days. She first announced her presence on Saturday with the classic offering of wobbly legs, most noticeable when I climbed the stairs. She was going to have to try harder then that; I firmly told her where to go and focused my mind on the return of the skiing boys in the evening, which of course was wonderful and not a little emotional. The week went brilliantly for them: Isaac became a super skier, jumping several ski school levels to achieve his silver medal and throwing himself into new experiences such as a night ski down a difficult run in the pitch black. Michael Facetimed me on the way down so I felt as if I was there- to be honest that would have been necessary even if I had been in France as I would have been way too scaredy-cat to chuck myself down a darkened mountain…

Steve took care of Isaac and all of the holiday logistics wonderfully, but of course at the same time it gave him a window into the future that was more than painful for him to look through, and his face conveying that to me broke my heart.

The week for me turned out to be wonderful and special in every way. After the excitement of the beginning with all of the girly treats (and a cheeky trip to London for a bit of chemo), it was just perfect to spend three quiet days with my lovely Mum, an equal haven for both of us.

Just to keep me on my toes and to give me some rather exciting material for the blog, my time Home Alone ended not peacefully but with a bit of a dramatic emergency. Now you will be expecting something medical to follow, but no, I was all good. Until I attempted to release myself from the oxygen chamber at 11.15 p.m. on Friday evening and realised that the zip was stuck. Completely and utterly stuck. It wouldn’t budge no matter how gently or not gently I tried to persuade it. I always take my phone in with me (smart) so roused Mum from her sleep to see what she could do. Unfortunately nothing moved an inch for her either… we needed reinforcements, preferably not in the shape of the fire brigade who would no doubt take great satisfaction from cutting me out and destroying the oxygen chamber that we haven’t even paid for yet… There was no doubt about who I should call- Marvellous Monday Judy, the calmest and most practical lady I know. I was hoping that she also operates on Fridays- it turns out that she does as within 5 minutes her reassuring face appeared at the porthole of my chamber. By this time I had been trapped a while and it was unbearably hot inside; I had stripped layers off but it still felt like a sauna and I was worried that the air was running low. Imagine suffocating in an oxygen chamber- the irony!

Judy assessed the situation and decided that spoons would be required. Yes, spoons. She disappeared for a minute and returned with two spoons plus a corkscrew for good measure. Half an hour of gentle, careful wrangling followed, accompanied by baited breath and hearts in mouths. All of a sudden there was a rush of air… I was freed! It turned out that the foam seal had somehow got trapped in one of the zips… hazardous times… but almost worth it for the good laugh we had afterwards.

Easter Sunday was lovely. Our church does not mark religious festivals or put any weight on calendar days allocated by humans; instead, as the early church, we celebrate the birth and death of Christ year-round- a perpetual Christmas and Easter if you like. So there was the usual You Tube service to join and it was wonderful, although so very emotional for me as the sermon focused on the theme of dying. I shed happy and sad tears afterwards.

I was so pleased that I had managed to prepare the potatoes and veg for the big Sunday roast before the boys returned, so Steve wasn’t starting from scratch in the morning and the dinner came together easily. Ms Crash was doing her best to floor me but I retaliated with a gravy-based weapon. I’m not a cook by any means, but definitely seem to be able to nail the gravy for a roast dinner every time. The was no question of me not making the gravy, wobbly legs or otherwise, and it was indeed magnificent- rich and plentiful. However, I took a risk in doing so: Ms Crash was clearly annoyed by my small domestic goddess triumph and upped her game, taking out not just my feet out from under me but the rest of me too and rather viciously. By the time dinner was over and the big and little kids tore outside for an Easter egg hunt, I couldn’t even sit up on the sofa enough to watch them. Steve had to document it on his phone for me which felt like a win for Ms. Crash.

However, I wasn’t defeated yet. Everyone was sitting outside delving into their finds from the hunt and I was getting real FOMO (‘Fear of missing out’, for the more mature generation). Determination took over and I dragged myself plus a big blanket to the seating area and cosied up, Steve putting his new industrial patio heater on for me (bought recently for this very purpose, so I can enjoy being outside even when the weather isn’t so kind). It was so wonderful to be there with everyone, despite how I felt. Take that, Crash!

She had more tricks up her sleeve yesterday, however, gifting me both nasty headaches and an intermittent stabbing pain in my right side. I was worried that the stabbing pain was in my liver until Steve pointed out where the liver actually was, in a completely different place. Ok good. I really should study anatomy a bit more..

Yet still I fought back, overseeing Isaac’s music practice and schoolwork (he has a lot this holiday and it needs to be crammed into the few days he is actually home) and preparing things for our next lot of visitors, Steve’s lovely Kent-based brother and family. I had planned a barbecue despite the dodgy weather forecast, and was greatly rewarded when the sun shone for us most of the day. We had a great time together, little Jasper never failing to entertain with his constant hilarious antics.

Since the very first chemo crash I have prided myself in the fact that I can resist sleeping in the day no matter how bad I feel – there is too much I don’t want to miss out on to spend the time asleep. But once all of the visitors had left and the three of us flopped on the sofa with the TV on (Saving Lives at Sea- Isaac will only watch documentaries..), I fell into a deep sleep where I stayed for most of the evening. When I woke up- ironically close to bedtime- a great feeling of sadness suddenly washed over me. I wanted everything gone, everything made better, put back the way it was just a few months ago. I wanted to see my precious little boy grow up and be there for him, I wanted to be by Steve’s side through many more years, the other half of the amazing team we have always been. And I wanted lots more besides. But we can’t always have what we want, and it’s not always best for us to.

Steve and I talked into the night, sobbed at what lay ahead and how soon it might be, but then determined to not look at that but to embrace and be grateful for every day. The amazing lady I follow on Instagram says: ‘Tomorrow is not promised to anyone. I was just given the gift to know that my life may be cut short. I’m the lucky one’. This is the right human mindset, and a great place to start. We then turned to Scripture, and found our hearts fully set at ease:

‘Knowing that he which raised up the Lord Jesus shall raise up us also by Jesus, and shall present us with you’- this is Easter!

‘For which cause we faint not; but though our outward man perish, yet the inward man is renewed daily’. This I will cling to. The inward man is the only bit that matters.

Back to last night’s antics… I eventually managed to put my phone down and sleep until morning, waking with a sense of renewed purpose and joy. Ms Crash grumbled at me in various ways but I responded by whizzing through the morning routine (oxygen, oils, mushroom mix, smoothie, pills, shower) and throwing myself into the more enjoyable part of the day. Spending the school holidays with Isaac is always a delight; after his intense terms with long hours at school he doesn’t feel the need to go anywhere or do anything, instead being more than happy with quiet time at home. As I have always taught in schools, my holidays are the same as Isaac’s and so we have enjoyed many, many days and weeks of just being together, me blissfully happy to take the role of companion, playmate and sometime piano accompanist…

Today Isaac is practising the slow movement of a Mozart flute concerto and I eagerly jump on the piano, knowing that it is an easy accompaniment and I have a good chance of not making a hash of it. It sounds beautiful and I treasure every note that Isaac plays.

The sun is shining again-hooray- and I decide to launch a grenade at Ms Crash in the form of a bike ride to the park. It works a treat, my legs slowly but steadily pushing the pedals around, and she is silenced again.

This gives me hope for the next few days, when a lot is happening. Tomorrow Isaac will be going off to his National Youth Choir course for 5 days- we will miss him terribly but this will be not only a very special time for just Steve and I together, but the start of my extended 50th birthday celebrations (got to milk it this year), which kick off in style with a treat-filled two days in London. Woo hoo!