A love letter to my wife for Valentine’s day

Warning ⚠️ reading this post may upset you; please don’t read it while operating heavy machinery.

I write this as Zoë is about to take Mark (3) to playgroup on his balance bike and continues to train for her upcoming charity triathlon, as Zoë says: “God loves a trier”. In addition we are all due to go on a family holiday abroad in a week’s time! 🤞

Well… I always knew this day would come, and secretly hoped it wouldn’t be for a very very long time, but Zoë’s tumour is back for more! Like a really shit version of Arnold Schwarzenegger in the Terminator. Coincidentally the nickname some “patient-centric” doctors insensitively give to Glioblastoma.  Which Zoë no longer has…. 🤔 the WHO changed their classification of CNS (Central Nervous System) tumours after Zoë was diagnosed – this is an evolving landscape….more on that at the very end….

My dearest darling Zoë, my first and only true love and mother to my children has been going around humming the modified lyrics from an Eminem’s song which now includes the lyrics “Guess who’s back, back again, cancer’s back, don’t tell your friends” to herself – I guess the black humour in the Wilson household has hit a new high!

So how did this all start? Well it all started with a phone call to Zoë’s nurse before I was due to depart for Belgium on a work trip:

“We are still waiting for Zoë’s scan result, it might be back next week. Are you around?”

“No, I’m in Belgium for work all next week.”

“All week?”

“Yes, do I need to change my plans?”

“No, we don’t have the result yet.”

“Ok, do you know when you will have it?”

“Probably next week, not quite sure yet. Would Zoë come in on her own next week?”

“Doubt on her own, but maybe with her mum, sister or friend.”

“Ok. We will call Zoë next week while you are in Belgium if we get the report, to see if she wants to come in.”

That’s how we left it; but it turned out they did already have the report. This is what my mum calls a “white lie”; which is how people justify lying because you are being kind and compassionate, in this case the kindness was to Zoë and I, but sometimes the road to hell is paved with good intentions… 

In my limited experience of the NHS, when they ask you to come in early for a scan result, they are not normally trying to put you at ease. They have something they need to discuss with you. Cynical, I know, but my one and only experience has proved this. This is an example of confirmation bias. 

Zoë and I discussed THAT phone call before I left for Belgium. We pondered; did they know something we didn’t? We concluded they knew us well enough that if it really was bad news they wouldn’t call her in without me…maybe it was good news, or confusing news, both of which are potentially better than bad news. We pushed it to the back of our minds and I set off for Belgium while Zoë, her mum and dad held the fort at home.

While on a treadmill in the basement of my hotel in Belgium training for the triathlon. God spoke to me. Now before my good friends (and mother-in-law) go out and get me sectioned under the Mental Health Act; let me explain. I grew up a Catholic; I’ve always been “religious”, but never really talked about God! If I did it made me feel a bit uncomfortable and itchy in equal measure. During my early adulthood I drifted in and out of the church, especially missing an entire chunk during my protracted University years. That makes it sound like I was off having some debauched times; I really wasn’t, I was a nerdy computer scientist and wannabe superstar radio DJ. Just ask my best man Rob!

Zoë was my first partner and I wanted to make sure she really really was “the one” – well she is. I have had over 10 years to check since then. We decided to get married in the Church of England; Zoë and her Dad’s denomination; as we felt that they sat on the fence a bit more than the Catholics. Having bought a copy of the “Catechism of the Catholic Church” from Amazon. I flicked through it (it’s quite large) and wasn’t sure I was quite upholding the rules of Catholicism any more! No meat on a Friday etc. Sorry Mum!

Being a bit of a belt and braces man, we decided to do both the CofE and Catholic marriage preparation courses before our nuptials and even tried to get a Catholic priest to do a blessing (sadly this multi faith approach as Zoë’s dad termed it) did not quite work out, the priest was busy! For any unmarried people, contemplating marriage, I would highly recommend a preparation course before you tie the knot. It seems much more socially acceptable to do birth preparation courses before birth. On the CofE course which lasted 1 day (the Catholic one took weeks); one couple decided not to get married. They had somehow got to this point in their relationship without discussing if they wanted children. Turns out one did, the other did not; the course forced them to discuss the topic at least.

I digress….. back to the main story: Matty’s “Hello Jesus moment in Ghent”. God has only spoken to me twice in my entire life (that I am aware of); maybe I haven’t been listening very well – Zoë says I tend to talk a lot when I am nervous.

1 – In the basement in Ghent when he filled me with the power of the Holy Spirit. I felt so strongly about it I fired off a hasty message to the Vicar, to let him know the good news. “Have no fear” – he quickly responded.

2 –  When we couldn’t decide who was going to be Mark’s Godparents. I prayed quietly in St Nic’s church and he told me who to pick. Izzy. So now you know, it wasn’t my choice, it was God’s.

Filled with the power of the Holy Spirit, I returned to my hotel room. I texted Zoë to tell her what had happened and she responded: “there are no atheists in the trenches”. I’ve since told one of my new friends. He completely disagrees with that statement and I completely respect his view. I came to know him since Zoë’s diagnosis as his wife had a brain tumour and they have two boys like us. We have never actually met, but we text each quite a lot. Zoë spoke to his wife a couple of times about using Optune as she too planned to use it. She sadly passed away just before Christmas leaving a massive void in that family’s life. I would like to share their story with you all another day.

How do you context switch from that, without seeming uncaring? My boss tells me he thinks I have ADHD. Zoë thinks I am slightly on “the spectrum”, our new cleaner thinks I should just get a blooming test through the health insurance. In my experience they won’t pay for much, and even if they do, what am I going to do with that shiny new diagnosis today? Not a lot, I suspect…. I ain’t taking any pills thanks!

Did that work? I made it about me again, not him. It felt clumsy. I need my friend Martina’s help. She writes all the copy for the fundraising pages. Well I write them and she makes them better, because she is great at what she does.

In my hotel room I started penning passionate emails. I thought God was telling me to fight health inequality. It was early on Wednesday morning. That evening I got a response from Alex Chalk. He is not our MP but at the suggestion of my good neighbour, who is a humble genius; I got in touch. We both wish we had Alex as our MP, he covers Cheltenham but due to a quirk of consistency boundaries, we are in Tewksbury. This is where I, my neighbour or God, I can’t remember which, had a genius idea…. Maggie’s is in Cheltenham! As you are may be aware Zoë and I are fundraising for them, and they are in Mr Chalk’s constituency! A way in! 

I forwarded Alex’s response to Zoë’s nursing team in Cheltenham, I’m not entirely sure why… as Zoë put it, maybe at this point it was less the Holy Spirit and more “manic energy”.  I call those guys the “Dream Team”, because they are absolute rockstars, and they get a lot of emails and phone calls from me! Sorry! They are also a bit like my mum. One of them recently remarked that I was too slim and I needed to eat more. It comes from a place of love, I can assure you. I emailed the following day to say I was eating some pies (my turn for another white lie, or is that one just a plain lie?!). Given that they have to deal with my “manic energy”, they really deserve a pay rise. Who becomes a CNS in oncology for the money? What a vocation! That pay rise will need another email to my MP….

Later that afternoon the reply came back:

Thank you for sending this through.
Matthew I wonder if you & Zoe would be available to come & see us on Tuesday at 2pm in Oncology Outpatients Dept. Sorry to email but am aware you are in Belgium with work.
Please call to discuss if you wish to.”

Maybe due to our relationship over the past 18 months I can read them a bit like they can me. I read the email and immediately knew, right there, right then, the scan, they were worried. Shit! I called back immediately and said:

“Give it to me straight please, I need to know.”

“We are worried about Zoë’s latest scan”

“Have the MDT reviewed it?”
A MDT is a Multidisciplinary Team – a panel of experts, in this case in Bristol, where Zoë had her brain surgeries

“Yes”

“Is it operable?” I ask.

“No”

“See you on Tuesday; oh and can you send the MRI to London ASAP?”

“Of course we can Matthew.”

The conversation was a bit longer than that, and I think my voice faltered on occasion, but those were the pertinent points.

I had left my boss Dave running the training course, not entirely sure what he was doing at this point but he seemed happy and in full flow, he’s very good at this aspect of his job, so I wasn’t worried. It was the final day of the course, so I pulled out my laptop and booked us two tickets on the last Eurostar home that night. I called my brother-in-law to confirm that by not telling Zoë until I got home, I too was deploying a good old Catholic “white lie” and she would forgive me. The day before my mother-in-law had texted me to say there was a train strike on Friday; she loves monitoring travel disruption. I don’t know how she does it, she doesn’t have an app, she hates apps! Thank you Lord I say! I now have the perfect excuse for rushing home early to be with my family.

I pushed all this upsetting news to the back of my mind, returned to the training room and somehow (power of the Holy Spirit??) finished the training course like an absolute rockstar! I was doing star jumps at the front at one point…. please don’t section me…. It will make things trickier for the family.

Dave and I headed back to the hotel to gather up our stuff, and I started assembling the team. Unlike (almost) two years ago this wasn’t my first rodeo, I knew who I could trust and who could help me and more importantly who could potentially help Zoë. I had been mentally preparing for this day in my head for the last year, we couldn’t be any more prepared if we wanted to. We had all the DNA reports, the personalised medicine recommendations, everything we needed to give the best shot we could!

While on the phone to Jayne, our professional patient advocate I broke down in tears finally allowing the emotion to bubble to the surface. Dave gave me a hug, thanks Dave! We got into a taxi and headed to the station and got the train to Brussels. With time to kill we headed to a Bistro and I ordered some Moules frites and a beer in my best French. Now just before you jump to any conclusions, that wasn’t me talking in tongues, that was months of hard work on Duolingo! I’ve since lost my perfect streak! I blame cancer, not my short attention span for new projects. 

I got home at 2am, gave Zoë a cuddle and went to sleep. Waking Friday morning, I explained everything I knew to her before she went downstairs to be with her mum, dad and the kids. We didn’t have a lot of information, so not wanting the scan result hanging over us all weekend I pushed for us to see Zoë’s private oncologist on Saturday, and as always he was only too happy to do so. We just wanted to know what they had found….. so this is when it all gets a bit weird…. it’s already quite weird, I keep talking about God. OK, let’s settle for bizarre…

The doc was 5 mins late for the call, not unusual for a doctor, but unusual for this one…especially on a Saturday. My friend thinks he frequents the White Horse in Fulham on a Saturday, so makes sure his private clinics run to time. 

“Well this is a bit embarrassing” he says; and “I must caveat this, I am NOT a radiologist”; “I’m not sure I can help much today as it’s a Saturday”. The report was pretty damning… “multiple new sites of disease”. The doc furrows his brow: “I’m no radiologist” he says again, and “I’ve been wrong before” and the “the radiologists always have a good laugh at my expense”, but I can’t see these new sites he says! I want to review the scans with my MDT on Wednesday. He shows us the scan on the screen… no swelling I ask. Nope. No midline shift I ask… no. Who am I kidding? If he is not a radiologist; I certainly am not! I took a picture on my phone anyway; just so I could check his work later.

Zoë and I visibly relax a bit. Ok. Speak again on Saturday he says! 

Now if this isn’t my first rodeo, it certainly isn’t his. He does clinical and research work and I can only presume he looks at a lot of scans of brains. Whatever it is must be subtle, no big enhancing mass. Maybe he had the wrong scan, wrong person, wrong date. “I checked three times”, he says. The report is definitely about this scan, the surgical cavities are in the right place.

We are confused, but we are not panicking yet. It’s my Mum’s birthday, so Zoë does what Zoë does best, she puts others above herself and makes sure my mum has a wonderful birthday. 

Monday – we try to forget about it, but I start  to arrange to get the scan over to the clinic in Germany and to Switzerland, so they can adjust her Optune array layout to focus on the new areas of concern. The NHS is of course 24/7 but certain things like this can only be done Mon-Fri. They also require lots of paperwork, and the trust seems paranoid that because you are requesting a copy of the scan you are going to sue them. Nope, I just want my wife to have fantastic care without geographical boundaries. Crazy idea Matthew!

On Tuesday we head to Maggie’s for a pep talk then head to the one of the worst meetings of my life; eclipsed only by the one where the brain surgeon told us it was incurable. There is no doubt in the BNOG MDT’s mind; the tumour is back; it’s moved to the right hand side of her brain and also her brain stem (a really old and really important part that controls breathing, heart etc) and their recommendation, get back on Chemo ASAP.

I didn’t behave well at that moment at all. I lost sight of Zoë as a human being and saw her as a problem to be fixed and even though I thought I was doing a great job of advocating for her, I ended up spending too much time trying to challenge the doctor’s (in my view, not Zoë’s), narrow minded thinking. This resulted in the meeting being quite confrontational and negative. That, of course, had a massive impact on Zoë. She was in pieces afterwards and thankfully Maggie’s were there to put us both back together. I have since apologised to Zoë for how I behaved that day. I really felt backed into a corner and up against the ropes, being a scouser at heart, when you do that to me I come out fighting!

Since that meeting the teams in Germany, London and LA (showbiz – the people who make the computer models of cancer and test drugs on them) have been talking. They are coming up with a plan, we don’t know what the plan is yet. I suspect, but don’t know, that the plan will involve lots of expensive drugs that are not available on the NHS and are some of which are probably not even available in the UK. But for now; I need to let them do their jobs, hang up my toy stethoscope (I’m no doctor) and go back to being a dad, a husband and (a role neither Zoë or I relish) carer. Yesterday I was one person in a (virtual) room of four, three of whom are some of the smartest people I know on the planet. Between us we were doctors, geneticists, scientists, advocates and computer scientists. There were far more degrees than people in that room and multiple decades of experience. I was the stupidest person there. It was both a humbling and refreshing experience. I finally felt at peace and I cried, happy tears. If they can’t crack it, then no one can, and what happens is God’s will.

There is still a role for me to play; as Zoë’s advocate. I might not be a doctor but I am an expert in one single tumour, a multi-focal Astrocytoma Grade 4, IDH mutant, methylated one that lives inside Zoë Wilson’s beautiful bald head. It’s not GBM, but they are both gliomas as NHS Doc likes to remind me, infecting the Astrocytes (not neurons) which are supporting structures of the brain and the cancer has spread along the grey matter tracts. 🧠

This is what we were discussing on Tuesday; when what we should have been doing was putting Zoë on a pedestal. She has done everything me and the docs have asked of her; she has suffered both physically and mentally and she has approached treatment with an attitude that I am in awe of. She has done it before and, if she wants to (as only she can choose), I know she can do it again! She should have come out of that horrible pokey NHS room (that doesn’t even have a computer or a window in it) with her head held high! But she didn’t; we failed her; the systems failed her. I want to try and make sure it never happens again; to Zoë or anyone else. Maybe that is unrealistic, but remember what Zoë says: “God loves a trier”. 

Another friend recently sent me this quote:

“Bureaucracies, I’ve suggested, are not themselves forms of stupidity so much as they are ways of organizing stupidity–of managing relationships that are already characterized by extremely unequal structures of imagination, which exist because of the existence of structural violence.”

David Graeber, The Utopia of Rules: On Technology, Stupidity, and the Secret Joys of Bureaucracy

Brain tumours are very heterogeneous ; which is why I believe in a personalised, multi-modal medicine approach; even if the NHS, MHRA, Big Pharam and NICE don’t. I’m working on them, but that is a problem for the future me, not for the current me.

For now, I need to have a rest; and be a husband and a dad, and I intend to. Zoë wants to have a day without talking about cancer; that might not be possible, but if not today, tomorrow, or the day after.

Have a good weekend everyone!

Matty x