29 August 2024

‘The Lord is my rock, and my fortress, and my deliverer; my God, my strength, in whom I will trust; my buckler, and the horn of my salvation, and my high tower.’ Psalm 18:1

Howdy!  It’s been a while… It felt like the right time for a little summer recess for the blog as well as ourselves.  Plus, there hasn’t been much to report as everything has been marching on with relative predictability, with cancer and its necessary baggage sitting comfortably enough alongside holiday fun and relaxation.  

We’ve been so enjoying the slower pace of days at home in Hertfordshire over the last few weeks, cherishing little things such as riding bikes, picking blackberries and shopping for school supplies (that one was emotional.  Mums will understand).

 But there have been some exciting, crazy times too- of course!  I’ll just pick out the highlights, top of the list being a trip to the Albert Hall to watch my amazing ex-pupil Tom make his Proms debut with the NYO.  The email from Tom’s family inviting us to come as they unexpectedly had spare tickets was a wonderful surprise and I didn’t hesitate to accept, despite the fact that the Prom fell on what would most likely be the worst day of chemo crash.  I resolved to be there even if I had to slump in my seat like a rag doll and listen to the concert with my eyes closed.  

As we had already planned to visit my brother and his family in South London the day after the concert, we decided to make a weekend of it and stay overnight: amazingly our friends Nikki and Paul so kindly allowed us to (literally) crash at their Kensington flat, a stone’s throw from the Albert Hall.  It was magical being Kensington residents for 24 hours: it felt like we were in an entirely different world.  

I’d like to think that I have redefined the term ‘mobility scooter’:  travel by scooter is the perfect answer for someone who would rather convey that they are having fun as opposed to struggling to walk. The three of us scooted from the flat to Kensington Palace and gardens, then through Hyde Park to the Albert Memorial, aware that I was on borrowed time and that full crash would hit at any moment.

Or not…  It didn’t hit on our scooting adventure.  It didn’t hit as we dined in a bistro around the corner from the Albert Hall, and I was able to enjoy every bite.  It didn’t hit as I climbed the huge staircase to our seats at the top of the Albert Hall and joyfully met Tom’s family. It didn’t hit as the concert began and I was utterly overwhelmed: not just by the wonderful, exuberant music but the fact that I was there at that moment to witness such a huge milestone in the musical journey of a pupil who, along with his siblings, has always been more than special to me. Tom most kindly and selflessly credits me as being his very first musical inspiration at primary school, but if I struck the match to light the kindling, the huge resulting fire has been a result of Tom’s utter passion and hard work.  It was so very special to be able to see Tom afterwards and congratulate him.  He has a bright musical future ahead, and I hope that it will bring him much joy. 

The crash still didn’t hit as we made our way back to the flat, with me practically dancing through the Kensington streets.  Just in case I was worried that it wasn’t coming at all, it reassured me of its presence with the gift of a  banging headache the next morning, but even that just about cleared in time for me to enjoy Sunday lunch and a scoot by the Thames with James and his lovely family.  

It was also a good opportunity for my sister-in-law Emily to hand over something she had sourced for me… I haven’t added anything to my arsenal of drugs and supplements for quite a while but after reading about the significant promise of melatonin as an anti-cancer drug which can increase the efficacy of chemo, I felt ready to embark on another little self-driven clinical trial. 

‘Sure, I’ll prescribe you some melatonin,’ Doc McLovely assured me when I asked her. ‘Oh… wait a minute…oh dear… it’s on the Red List… I’m not allowed to prescribe it.  It seems that only consultant psychiatrists can- would you like a referral?’

Now there are a lot of things I would do in the quest to keep myself as healthy as possible, but declaring myself insane is not one of them… The melatonin would have to be sourced somewhere else.  It is a mild, harmless drug that is readily available over the counter in practically any country except the UK, so some drugs tourism was in order.  We hoped to pick some up in Cyprus, but when we eventually managed to find a pharmacy it was closed…Happily, however, Emily volunteered for the role of Drugs Mule on her recent business trip to Chicago, returning triumphantly with big pots of super-strength melatonin.  

This new addition to the pack can’t be taken alongside the mighty Zopiclone (unless you want to render yourself entirely comatose, which on steroid days is admittedly tempting), so I kick off the night with a melatonin and only add Zopi into the mix if I wake ready for a rave in the wee hours.  

A few days after the London frolics it was Isaac’s birthday- his 11th birthday, one that I wasn’t sure if I would see, so to say that I was thankful is an understatement.  It’s the little things that mean so much: the excitement upon waking up, the birthday hugs, the happy building of brand new Lego.  And the party- probably Isaac’s last of this kind now he is 11.  This year’s was a lovely, relaxed affair for a small group of friends: inflatable fun on a local lake following by a picnic and game of tag in the playground.  Just perfect. 

The girls and co joined us in the evening for Isaac’s choice of birthday dinner: steak cooked outside on the hot plate, great fun and more than delicious. 

We stepped things up a notch the next day with a crazy and somewhat bizarre magical mystery road trip from Hertfordshire to Dorset via most of London.  I mean, why not spend the day at London Zoo before making a flying visit to the Prof on Harley Street, eat dinner in Hammersmith, watch Shrek at the Hammersmith Apollo, and then execute a late-night dash down to Cloud 9, arriving a little after midnight?  (Not my idea.  Alright, entirely my idea.)

It was the first time we had been at Cloud 9 all holidays, due to the wedding, and it was so very good to be there.  It really is our happy place; I always breathe a big sigh of contentment whenever we walk through the door, and an even bigger one when we ascend to the upper floor and are greeted with That View, a huge expanse of sky and sea with the hills of Studland sandwiched between.  

This trip was particularly special as we were being joined by Bridesmaid Becca and her lovely partner Richard.  Memories of Maryland beach escapades at the age of 19 were at the forefront of our minds as Becca and I swam and paddleboarded, leaving the men to chat happily about boilers (true fact).  It was so good to be with Becca.  She has messaged me every single day since this all began, and despite the circumstances we are both enjoying this new phase in our friendship of over 30 years, chatting about everything under the sun rather than just cancer…

So here we are in the final full week of the holidays, aware in so many ways that the summer dream is coming to a close.  The reality of going back to school is one thing, but the reality of going back to the CT scan room is something else…

On top of that, sitting unavoidably in our minds is an awareness of how different this September will be from the one we had envisaged for the last few years: September 2024 was to mark the start of our new lives with relocation to the Dorset seaside, a new school for Isaac, maybe a new job and change of pace for Steve, and so many possibilities for me to explore with my teaching.

‘We will definitely be living here by next September,’ I assured my Mum about a year ago, ‘If we haven’t managed to move house then we can bridge the gap in Cloud 9…’

How foolish an assertion that was! God can change everything in an instant and does so for our good. So, as difficult as it is, we have complete peace with this new path and look to God for guidance in every step. There have been plenty of surprises so far (I’m still alive, for one!), so maybe we will get to Dorset after all, but either way, all will be well.

We are of course so very grateful that we can be part-time Dorset residents, and are spending these last precious summer days back in Cloud 9, only returning to Herts in time for my next chemo and the start of term.  It has been a quiet week so far, with lots of fab swims in the sea, but the masses are descending on us this evening: all the big kids, their partners and of course little Jasper. We are looking forward to enjoying the beach and Bournemouth Airshow with them all, but the main event is the Jellett wedding do on Saturday; none of Steve’s family could come to Cyprus so this will be our special celebration with them.  And yes, I GET TO WEAR MY DRESS AGAIN.

Today was the first day of the Airshow: something we have always enjoyed as the balcony at Cloud 9 gives front row seats (and the fridge a steady supply of refreshments..). 

This afternoon’s airshow programme was punctuated by a video consultation with SuperProf, something Steve and I were quite nervous about as there were a couple of big questions we needed to ask.  

The first was about my tumour markers, which had gone up following our trip to Cyprus. If they were to rise again, it could signify that Irene is struggling to hold her own… Thankfully SuperProf revealed that they had gone slightly down; slightly is fine, even to stay the same would be fine.  (We aren’t kidding ourselves; we know that at some point they will go up and there will be little that can be done to stop them, but by the grace of God perhaps that won’t be just yet.)

The second question was even harder to ask, and I had rehearsed it many times in my head:

‘So, Marco… I’m writing a blog, and it’s getting a bit boring… What it really needs is a good dose of blood and guts, and the closest I’ve got so far is acupuncture…  So I’d like to see a surgeon please.’

That is not what I said.  It went a bit more like this:

‘So…whatever the scan happens to show, there’s a particular surgeon that we’d really like to talk things through with: do you know Jamie Murphy?’

SuperProf did know Jamie Murphy, or should I say Professor Jamie Murphy (yup, Profs all over the place).  Prof Murphy is internationally known for tackling the most complex surgical cases, those which have been turned down by multiple other surgeons.  He was the one who saved my new friend Kate’s life six.years ago.  ‘If he can’t do anything for you,’ Kate told me matter-of-factly, ‘No-one can.’  He has almost legendary status on the ‘Living with Stage 4 Bowel Cancer’ forum, where he is known simply as ‘JM’; many people on the forum have either seen him or are hoping to. 

SuperProf’s answer was as good as we could have hoped, and as gentle and considerate as we expected:

‘I’d be happy for you to see him and will do a letter of referal,’  Prof conveyed.  ‘But it might be difficult for you to hear what he has to say.  I don’t think surgery would be successful for you, as you have cancer in so many places.  Also, your cancer is agressive: it took a lot to get it under control and we’ve seen how how quickly it progresses with any kind of chemo break. But it will be interesting to hear what he has to say, and I understand why you would like the opinion of an expert in a different field.’ 

So, difficult or not, we are going to see Prof Mk 2 the day after scan results.  Wondering whether to down a (small) glass of wine before or after…

SuperProf then went on to show us a brief glimpse of the cards that he has hiding up his sleeve, just to emphasise what we already knew, that he is On It.  He said there will be a couple of other chemo options to try once Irene is retired (sob), and also that he will be considering the option of at least removing the ovarian tumour as that would be a smaller op with quicker recovery.  Just to evict one of the tumour crew would be wonderful… we will see.  He also mentioned clinical trials, but we are not there yet (which is just as well, as there are currently no clinical trials for my show-off ‘look how rare I am’ mutation..).

So SuperProf has everything in hand- or rather, the God of the universe does, and we rest alone in Him as we enjoy these last, joy-filled summer days and look to the next chapter of the story.  

‘Strengthened with all might, according to his glorious power, unto all patience and longsuffering with joyfulness’ : Colossians 1:11