29 July 2024

‘Behold, we count them happy which endure. Ye have heard of the patience of Job, and have seen the end of the Lord; that the Lord is very pitiful, and of tender mercy.’ James 5:11

Exactly 29 years ago I was watching the sunrise from my attic room at our family home in Woking after being awake all night. Excitement, nerves and anticipation had prevented me from getting any sleep at all- totally normally for a bride before her wedding day, I’m sure.

Today, our wedding anniversary, I also saw the sunrise, but from my Knebworth kitchen, trying to make myself useful by unpacking the bags from Dorset but the pain overtaking me and driving me to the sofa where I’m currently wailing- yes wailing- with stomach cramps. And intense neuropathy, my feet feeling like they are on a never-ending firewalk. And other woes that I will not indulge by giving them names.

Oh come on Irene- if this is you doing good you know I will excuse you entirely, but is there really any need to be so dramatic?

In amidst the pain, my thoughts keep turning to the fact that we have no food in the house after arriving back late last night, and I really should do a grocery order… This seems wrong. Old people who are ill and suffering don’t have to worry about feeding the family and whether their 10 year old should make a start on his holiday homework, but the young or middle-aged do…. it makes it easier and harder all at the same time; the normality distracting and uplifting at best, but a heavy burden at worst.

The cramps subside slightly and I resolve to climb the two flights of stairs to my oxygen chamber. Maybe this crash is so bad because I haven’t been able to do my full usual protocol of oxygen and suppplements over the last 2 weeks (some things that I get delivered from a herbalist were lost in the post just before we went away so I’ve had to do without- let’s just say they aren’t things that you can buy over the counter…)

The cramps are still grumbling away under their breath but the steady stream of oxygen is relaxing me and allowing me to work on the grocery order. Yay.

Before I was reduced to this crumpled state, last week was wonderful. We headed for Dorset on Tuesday, me attached to my pump from the previous day’s chemo, which had been pretty tough, a definite shock to the system after the holiday break.

After settling Mum back in her home we drove on not to Cloud 9 but to a wonderful holiday let in Hamworthy, a unique peninsula of Poole Harbour. We were staying there to be nearer to Isaac’s music course with PYSM; commuting from Cloud 9 last year had meant lengthy drives twice a day, not something we felt would be workable or desirable this year. It was the right decision: The Boathouse was a true oasis, an annexe to a large family home with views across the beautiful harbour with its islands, inlets and array of drifitng sails.

The owners are a remarkable family with a sad story: Andy, who runs the holiday let, has had MND for 13 years after being predicted to survive just a year. He is friendly, chatty and one of the kindest people I have ever encountered. He is also is completely immobile, on permanent oxygen and can communicate only via limited eye gaze and blinking. It was humbling to see: I had some good chats with Andy and his lovely wife as there are some parallels with our situation, but I was so mindful of the fact that there are more difficult things than even cancer. Despite my pump, chemo side effects and neuropathy, I was able to clamber along the shore collecting stones with Isaac, kayak around the harbour with Steve feeling the thrill of the little waves and watching an abundance of wildlife, and bike to a nearby country park where we climbed on play structures, slid down slides and played hide and seek.

Isaac absolutely loved his music course, playing and socialising with fabulous teenage musicians. What they thought of a small 10 year-old sporting a homemade Lego necklace I’m not sure, but they were kind and welcoming to Isaac and it was the perfect musical level for him.

Saturday was the final day of the course, an intensive orchestral day, and Steve and I were very aware of the chemo crash clock ticking. Could we beat it and manage a lovely day celebrating our upcoming anniversary? Sort of…

After checking out of The Boathouse and dropping Isaac off, Steve and I headed for the beautiful, tranquil Blue Pool and I cajouled my legs to walk the 3 km route around it. Of course when I spied the huge rope bridge it was a different matter: my inner child trumped everything and I ran and bounced over it without a thought. (Until I reached the other side and caught my body looking at me with quizzical despair…)

Our next stop was a gorgeous restaurant near Kimmeridge Bay called Clavell’s. The food was delicious but halfway through my crab sandwich the all-too-familiar zombie curse took full hold and I was helpless to resist: it was all I could do to steady myself in my chair and try not to look like I was on heroin.

Determined to fulfil the final part of our anniversary plans, however, we drove on to Kimmeridge Bay and lay on the cliff top grass in the car park sharing an ice-cream and watching the ever-changing scenes below. People were paddleboarding and swimming in the sparkling, azure sea, or clambering over the rocks hunting for fossils. It suddenly hit me that we had done just that almost exactly a year ago: I pictured the three of us bounding from rock to rock, exclaiming excitedly as we discovered ever-bigger fossils etched into the stones like drawings. And all the while I had Stage 4 cancer enjoying an unlimited rave within my body, free food and drinks on tap…

It was soon time to head to Isaac’s final concert of the course, a performance of big and exciting orchestral pieces that the students had covered in just one day. I felt truly terrible, but the choice was clear: languish in the car by myself go to the concert where I would be surrounded by lovely people and music. You know what I chose.

It was extremely hard, a feat of physical endurance just to sit vaguely upright, but as soon as the orchestra launched into the arresting, dramatic opening of Mars from Holst’s The Planets, I was transported into a different world, one of freedom and possibility. And there was no ignoring Isaac’s piccolo: he had been more than excited to play a sustained top A-flat over the top of the orchestra (if you need rousing at any time, just get a piccolo player to blast you a few notes; it’s the equivalent of a bucket of iced water over your head).

By the end of the concert, I was utterly done for and practically crawled to the car. The next 24 hours were a blur of pain (everywhere you can think of, and places you can’t) and weakness. The worst thing was the stomach cramps which prevented me from eating anything at all; if all else fails in chemo crash times, I can usually console myself with a bit of nice food…

Anyhow, I’m starting to resemble a human being again now and looking forward to a quiet week at home enjoying the garden in hot and sunny weather. Just to remind me that I have cancer, I have an appointment of some sort every day. Today’s excitement comes in the form of a virtual session with my new physio from the LOC, one of the Pain Wizard’s sidekicks. Billie is lovely and works with me for over an hour on hand putty exercises, balance and strength. I come away with a daunting regime to add to Pain Wizard’s list.

‘To be honest, though,’ Billie told me, ‘of more use to you than any of these will be two things: 30 minutes of piano playing a day, and another holiday to a warm beach destination.’

I’ve decided I like Billie.

Piano playing is one pill I certainly won’t mind taking; I’ve resolved to play a lot of accompaniments for Isaac as well as exploring some new repertoire for myself rather than sticking with what I know. Hopefully the more I play the better I will get at compensating for the numb fingers. And as for the hot holiday, well- after the next scan I’ll have a word with SuperProf about whether I might be allowed out on parole again…

Tuesday 30 July

Still feeling more than delicate, but managing to function. The day is punctuated-ha!-by a lunchtime acupuncture session, my first.

‘I’ve never treated anyone for neuropathy before,’ the acupuncturist revealed. ‘So I had to do a bit of Googling.’ Hmmm….

The process did not offer much to reassure me; the supposedly-painless needles felt like small wasp stings as they broke through the skin, and I walked out of the appointment sporting a large lumpy bruise from the needle that had caused the most discomfort. I will give it another go next week, but think I will contact Pain Wizard to see if he can give this poor lady a few pointers as to where to stick the needles…

Wednesday 31 July

The verse that opens this blog has been very much at the front of my mind today: ‘Behold, we count them happy which endure.’ There is much to endure in this situation, and of course I feel this particularly in the times of physical difficulty. I’m also aware that much harder things to endure may be coming. But as I look up to Christ I know that I am ‘counted as happy’, and can truly smile.

I had a nice chat this afternoon with Doc Charlotte from UCLA Integrated Cancer Care (she of the mistletoe fame) about our similar-aged children and the fact that her son’s wedding was just a couple of days after Lydia’s. There was less to discuss of a medical nature:

‘How are you getting on with the mistletoe?’

‘Well, I’m taking it..’

‘That’s good! Do you think it’s helping?’

‘I have no idea…’

‘Ah, yes, I can understand that. Lovely. Well I’m sure it will be helping so I will prescribe some more.’

‘Lovely, thank you.’

‘Lovely. Goodbye.’

It was wonderful to have Michael with us today and overnight. He has recently taken the plunge and left his job to focus on his own business: who would have thought that our x-box-obsessed, allergic-to-study teenager would be working for himself at age 28? (Well he did, for one). Michael worked hard all day and I was looking forward to spending the evening with him. Unfortunately the rogue forces within my body had other ideas, deciding that some new mischief was in order now that I was starting to emerge from the chemo crash gloom. That old enemy the painful, swollen tummy had been haunting me for a couple of days but now ramped things up to a new level; I popped upstairs upstairs after dinner for a quick lie-down in the only position that was comfortable, and the next thing I knew it was 11 pm and Steve was waking me up…I had missed the whole evening… I consoled myself with the fact that Michael is coming back on Sunday for a bit after spending the next few days in London.

Thursday 1 August

Another new month, one that I may well not have seen; I am so grateful for each and every small and big milestone in time that I reach.

Not much to report today, apart from the fact that the tummy pain is still here- worse still is the fact that I look pregnant and can’t wear a lot of my clothes… I have to tell myself that this has happened before and hasn’t meant anything as far as the tumours are concerned: the obvious fear of course is that Ms. Ovarian is spreading her wings, but the more logical reason is that my system has been screwed by the chemo.

That is indeed SuperProf’s opinion during my afternoon consultation, which takes place over the phone since he is on holiday in Tanzania. ‘He’d better not get eaten by a lion,’ Nurse Kristine had commented, eyes rolling, when she came to see me in hospital last week. ‘We need him here…’

And so we do. But the fact that he doesn’t abandon his patients whilst on holiday speaks volumes. Of course he has a practical solution to the cramps and swollen tummy, which he said could be a side effect of the strong anti-sickness medication that comes as a freebie alongside the chemo cocktails. ‘Try taking two Sodium Docusate tablets for 5 days after pump removal’ he advised. Yes Prof, I will: let’s hope it’s that simple.

SP confirmed that I will be having 3 more chemo cycles before the next CT scan, which brings us into September so at least I’m off the hook for the rest of the summer, woo!

Friday 2 August

A bit of a dive into the unknown today with a mysterious set of tests in London, apparently ordered by Pain Wizard but not mentioned at the consultation so I was surprised by the email summons for ‘EMG/NCS’ from an unknown doctor. Turns out this means Electromyography and Nerve Conduction Studies. Yup, I was no further enlightened either. Until I rocked up to One Welbeck near Bond Street (right up there in the hospitals-which-feel-more-like-a-swanky-hotel stakes: the live cello music in the waiting room did not go unappreciated) and met the charming Doc Lightning. With the enthusiasm of a Year 5 child doing their first science experiment, Lightning quickly made an electrical circuit with me as the main component. The electrodes attached to various points on my hands and feet then proceeded to deliver a multitude of tiny electric shocks. It was actually ok and even quite cool: mind boggling that an electrical pulse half up my arm could cause a specific finger to jerk upwards. Then came the probes-in-the-muscles bit: ‘These needles are very fine,’ Lightning assured me, ‘you won’t feel a thing.’ ‘That’s what the acupuncturist said,’ I told him, pointing to the now-impressive bruise on my lower leg… But it was absolutely fine and Doc was able to tell me at the end that my neuropathy was relatively mild (I can’t imagine what severe neuropathy would be like..) which is fabulous and could mean I can be given Oxaliplatin for longer. I think that counts as ending the week on an up.

Saturday 3 August

This will be one of my Good Weekends so I don’t want to waste a minute of it. First ever Park Run this morning; well, Park Powerwalk pushing my mini-team-member Jasper in his pushchair whilst Steve, the big kids and Isaac tore around. At the halfway point I was shattered and contemplated calling it a day…but didn’t of course, and the feeling of being cheered over the finish line was awesome.

As if that wasn’t enough exercise, we are off on a bike ride this afternoon, and no doubt will fit some other kind of active pursuit in tomorrow around our family BBQ, maxxing the minutes until it all starts again with chemo on Monday.

I’m ready for it. Firstly, I’ve discovered that they will bring Jude’s ice-cream to your hospital bed if you ask: complete game-changer! But secondly, and much more importantly, I’m calm and happy in the knowledge that I have a hope far beyond this world and the assurance that any sorrows here will be turned to joy.

‘To know that nothing hurts the godly, is a matter of comfort. To be assured that all things which fall out shall co-operate for their good, that their crosses shall be turned into blessings, that showers of affliction water the withering root of their grace and make it flourish more; this may fill their hearts with joy till they run over. God takes away the world, that the heart may cleave more to Him in sincerity. God sweetens outward pain with inward peace.’

Thomas Watson