28 OCTOBER 2023

I have set up this blog to be able to update our lovely friends and family with information about my situation, predominantly medical, meaning that messages between us can focus on the personal without me or others needing to relay the same facts many times.

But first, here’s the story…

A short time ago, a family at our youngest child Isaac’s school set up a charity after their 6 year old little boy sadly passed away from cancer. They named it ‘It’s Never You’. How true that is… cancer is always, always something that happens to other people- until suddenly it isn’t.

Six weeks ago I was dashing madly around as usual, teaching umpteen lessons, conducting choirs and ensembles, working furiously on a new arrangement of one of my Christmas cantatas which was to be performed this December. Oh, and self-publishing copious music. Oh, and running a household, cooking, cleaning (sometimes), doing school runs, tearing around the park with Isaac and jumping higher on the trampoline than a pushing-50-year-old should probably be doing, especially when clad in a bikini…

Fast forward to today… I’m essentially housebound and can only shuffle around due to my painful, colossal abdomen. We swapped our all-inclusive half-term holiday to St Lucia for copious appointments, tests and a mini-break at the Hotel Lister Hospital for pain relief (also all-inclusive, but the cocktails were entirely drug-based…)

It all started innocently enough, when one morning in mid-September I attempted to put on my jeans, only to find that I had somehow outgrown them overnight. Must be that middle-aged spread I had prided myself on so far avoiding.. or some other peri-menopausal joy, perhaps. But a few days later I had inflated like a balloon and it was incredibly painful, so I sought the opinion of the GP.

‘I like to play a game of ‘Guess Who’ when making a diagnosis,’ declared Doc Clown^[1] merrily the next day, which didn’t do much to reassure me.  ‘I’ve folded down every card except appendicitis, so that’s what you have.’  

I was rather puzzled and conveyed that I really didn’t feel as if I had appendicitis.  ‘Oh you will soon,’ he assured me.  ‘The pain will get worse very quickly.’  I was unconvinced but agreed to go to the Lister Hospital for emergency blood tests. 

‘Good news!’ trilled Clown on the phone that evening. ‘Blood tests are entirely normal so my money’s on a urine infection, take these pills.’

But those pills of course did nothing and my tummy kept inflating… cue a desperate trip to A and E at 6 a.m. to try to get some kind of scan. This did indeed result in the allocation of an ’emergency ultrasound’ a week later.

‘I don’t like the look of that,’ mused the scan technician as she examined the screen, ‘I don’t like the look of that at all.’  

I have to admit that I was relieved that something had finally been found; I had been beginning to think that I was going mad… but any relief disappeared as soon as the details were revealed: it was a large ovarian mass measuring 11x9x8 cm, suspicious-looking with its own blood supply.  

Suddenly the medics sprang into action: blood was taken for a tumour marker test and a request for urgent CT scan made.  ‘How soon is urgent?’ I enquired.  ‘Hopefully within the 2-week cancer pathway,’ was the answer.  We had health insurance through Steve’s work; it was time to make use of it.

After a multitude of phone calls to the insurance company and various hospitals, I managed to get an appointment the very next day with a lovely gynaecologist who was able to access the tumour marker results: I knew what was coming when she said ‘Did you come here on your own? (Yes) Will there be anyone for you at home? (No. But of course after a phone call Steve jumped on a train from London to come straight to the hospital).  My CA-125 (ovarian cancer marker) was over 100, several times the normal level.  It was almost certainly ovarian cancer.  

‘Our mobile CT scan unit only comes every 2 weeks,’ relayed the consultant, ‘But amazingly it is here today and I’m going to ask if they can fit you in immediately.’  They did; I was in the machine 10 minutes later.  An MRI was also scheduled for a few days’ time, and there then would be an MDT (Multi-Disciplinary Team) meeting at the Lister to decide upon a full diagnosis and plan. We would receive the results on 13 October at an appointment with gynae cancer surgeon Dr. Mallard. 

We were in shock, and there were plenty of tears, but we were encouraged by stories of people who had done well with ovarian cancer, and my tumour markers were apparently not as high as many people’s so perhaps I had a straightforward case that had been caught early.  I actually quite fancied the idea of a little bit of surgery (‘they may only take your ovaries out rather than the whole lot,’ I was told); it would be a nice rest from work and I could treat myself to some lovely new nighties from John Lewis…

The 13^th came…Friday 13^th.  We were glad not to be superstitious and thought that we were ready for anything that day.  We were so happy to be seeing Dr. Mallard, who was known for being the absolute best in his field.  ‘You’re in safe hands’, his secretary assured me. 

Steve and I entered the consulting room at the Spire Harpenden hospital with an entire population of butterflies in our tummies, but keen to know the full facts and proposed plan.  As soon as we walked in, however, we knew that something was very wrong. Both the consultant and the accompanying nurse wore the darkest, most serious expressions that we had ever seen.  The friendly smile that I had prepared for the meeting vanished from my face instantly and I wanted to run out of the room.  Instead, trance-like, we took our seats and awaited what would be said.  There were no introductory niceties: Mallard got straight to the point.

‘It isn’t good news I’m afraid.  You have advanced bowel cancer.’

Bowel cancer? What?!! How?!!! I may have had every symptom on the list for ovarian cancer, but it turned out that was just a secondary tumour, hence the ovarian markers not being crazy high.  On the other hand, the bowel cancer marker, CEA, was through the roof, as the sneaky thing had also taken a one way trip to the liver. And the lungs. Just in case we were in any doubt, Mallard added: ‘It cannot be cured.’

We were in utter, total shock.  Nothing felt real.  We were too numb to cry.  Instead I turned to Steve and said: ‘It will be ok.’  Our human minds told us something very different, but this was clearly God’s will and we needed to cast ourselves on Him.  It would be ok.

We were in that room for over an hour; Mallard’s clinic must have ended up running very late that day…. He and lovely cancer nurse Becca allowed us to talk as much as we wanted and asked us about our home situation, our jobs, our children.  Our children…

Even worse than being told the news ourselves was relaying it to others, so many others…. Our eldest, Michael, was already staying with us, having had come down from Manchester a few days before once it was apparent that this was no small thing.  We called our grown-up girls and told them to come round immediately.  ‘Bring Connor,’ we told Lydia, referring to her fiancé.  That told her enough. 

There was more numbness when we shared the news; the tears would come later, private ones within own little couples or families.  After an eternity of talking, and hugging, I suddenly realised that I was supposed to be at Isaac’s school watching his house football matches, a tradition on the last day before half term.  Isaac, our sweet, beautiful little boy, just turned 10 years old.  As the youngest child by many years, he was not only adored but also nurtured and protected by his siblings and parents.  But we would not be able to protect him from this.

It was decided that we would all go to the football, a united front, a family together.  I was overcome with emotion the moment we approached the pitch and I spotted Isaac, smaller than all of the other boys with a mass of straw-blond hair.  This gorgeous, loving little boy was going to lose his Mummy, and he had no idea.

But what could we do? We could cheer for the team, for Isaac.  We could smile and hug him afterwards and load his ton of half-term baggage into the car boot:  games kit, school bag, mud-coated play tracksuit, a zillion pairs of shoes.  And then what?  Friday evening stretched out before us, usually one of our favourite times of the week…Steve looked at Michael and said: ‘Glass of wine?’  It was the right thing, the first of many choices to carry on as normally as possible, to find the joy, to laugh, to smile.  The glass became a bottle.

We took a similar approach the next day, Saturday.  ‘Let’s not sit around feeling sad,’ declared Steve.  ‘We need to do something fun, and something together.’

We don’t usually do Spontaneous: I love to plan things in the minutest detail and then look forward to them.  But we had entered a different world now, one in which living by the day and seizing the moment would be at the forefront.  We thus found ourselves driving into central London; another first as the train wasn’t an option due to my lack of mobility and extreme pain.  As it was, I winced at every little bump in the road… We parked near Embankment in view of the London Eye, and headed for Flat Iron, a fab no-frills steak restaurant that my family are fond of.  

It was here that I first experienced the emotion that I call Happysad: an intense, overwhelming mix of the deepest joy and most painful sadness imaginable.  I looked up and down the long table in the restaurant, taking in each and every loved one, feeling blessed beyond measure with such a big and amazing family: four children, three partners, one little grandson, and a husband who is more wonderful than words could ever describe.  And then came the stabbing, searing pain of the knowledge that I must leave them, twisting and writhing within my heart.

Yet despite the inevitable human emotions that will no doubt overcome us constantly on this journey, we have resolved to rest entirely in the Lord God, who has us in the palm of His hand and who will carry us through on eagles’ wings.  And we will chase joy.  Lots of it.  We started right away with a wild speedboat ride on the Thames Rockets, the other thing that Steve had booked just the night before.  It was AWESOME!  I laughed and cried into the wind, and couldn’t have felt more alive.  

Very difficult times lie ahead, but we are adapting and we are coping, sustained by the many, many promises of the Word of God: 

‘Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest.’ Joshua 1:9

‘When thou passest through the waters, I will be with thee, and through the rivers, they shall not overflow thee: when thou walkest through the fire, thou shalt not be burned; neither shall the flame kindle upon thee.’ (Isaiah 43:2)

We have been told that the plan is to get going with chemo first rather than doing surgery, as the recovery period would delay chemo considerably. So my pretty new nighties will stay in the drawer, and I am stuck with my painful 8-month-pregnant belly for now.  I guess that means she needs a name: it shall be Bertha (after Big Bertha, the German World War One gun, although the gun part is obviously less relevant). We will find out the exact plan on Wednesday 1st when I finally see the oncologist, but are expecting them to suggest a pretty relentless chemo routine for months, with possibly a ‘break’ for surgery if things stabilise.  

But we walk on in faith and hope, upheld by our Lord God. 

‘Hear my cry, O God; attend unto my prayer. From the end of the earth will I cry unto thee, when my heart is overwhelmed: lead me to the rock that is higher than I. For thou hast been a shelter for me, and a strong tower from the enemy. I will abide in thy tabernacle for ever: I will trust in the covert of thy wings.’ Psalm 61: 1-4

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^[1] Medics’ names have been changed to preserve anonymity: some of the nicknames are more complimentary than others…