Sunday 9^th September 2018

 The boxes are packed, the van has been reserved, the friends have been recruited to help (thank you Dan, Chris, Dave) & we are good to go. I’m feeling a bit spaced out – still in shock I now know with hindsight. But you have to keep moving forwards. Like a shark, Fergus says to me. Just keep moving forwards.

The van hire place is really busy with cars in every space in the car park. “We’ve upgraded you to a bigger van,” she smiles. “Would you like to pay £20 to reduce your insurance excess to zero?” Best had. I’m not the most confident of drivers, so I sign up. Of we go, me and Scarlett (one of my 3 daughters). Hmm, I think. I don’t think this van will go around that corner with that parked car. It just doesn’t look like it will fit to me. Don’t be silly, of course it will fit, there’s no other way out of the car park so it must fit. Duh! So I drive around the corner. There’s an awful crunching noise of metal on metal. It doesn’t fit. Scarlett hides her face in her hands.

I’m glad I paid the insurance.

Saturday 8^th September 2018

 I take Scarlett to a GP appointment that I’ve been meaning to get around to for some time. She’s had a lump on her neck that is not going away. It appeared about a month ago after she had some kind of injury that left her barely able to move her head around. That was a fun night in A&E. She fell asleep on my shoulder after a 6 hour wait & when she woke up she could move it again. Anyway, I’m convinced it’s connected to this event rather than anything more sinister.

The GP, however, is not. We are referred for an urgent appointment to a children’s cancer specialist.

I go home and continue packing in a trance-like state. It’s no wonder we can’t remember where anything is later when we come to unpack.

Friday 7^th September 2018

 We’ve spent the last 48 hours crying & packing. Crying, you can understand. Packing I need to explain. Unbelievably, in the same week that Ferg was diagnosed as having a brain tumour, we also ran into some significant problems with our building project. A fairly simple home extension became a ‘you need to move out now & for a few months’ – it’s a long story that doesn’t really belong in this blog. But what it means is that we have to find a rental home, too.

Friday night, after school, usually a family highlight. Only this Friday we’ve been saving up some news that we have to share. How do you tell your 3 teenage daughters that Daddy has a life-threatening illness? How much do you share? We prepared, we did what we could, but they are too clever. They ask the right questions. They are 13 after all. And they know. It’s the worst evening of our lives.

Oh, and by the way girls, we are also moving house on Sunday.

Thursday 6^th September 2018

The specialist nurse assigned to Fergus’s case returns my call. She tells me her colleague had taken on the job of compiling messages that morning, and that the voicemail I left yesterday ‘broke her heart’.

It’s clear in the first few minutes of the call that she’s good at her job. Balancing comfort & reassurance with honesty is not easy as she fills me in on some of my immediate questions. “What are the survival rates like?” I ask. She gently tells me that there is no cure for brain tumours, only treatments. The treatments (surgery, radiotherapy, chemotherapy) can slow down progression of the tumour and can extend a patient’s life significantly, but nothing can cure it.

The team believe that Fergus has either a grade 2 or 3 tumour. I’ve seen the picture Fergus took on his phone of the MRI scan. It looks enormous. I ask if it is big & I’m told the truth: yes, it is. And yes, we are concerned.

Fergus’s treatment plan is brain surgery – an awake craniotomy – in just over a week’s time. As much tumour as possible will be removed, without affecting any of Ferg’s function e.g. movement, speech. That’s why he’ll be awake during the surgery: they can be sure they are not impacting his mobility etc. as they can test this before removing each section. Then the tumour tissue can be analysed & a full diagnosis can be given (type of tumour, grade of tumour from 1-4). Until then, we have a lot of uncertainly to live with.

She takes time to explore with me the best and worst case scenarios. The best we can hope for is a low-grade, slow growing tumour that will take many years to progress. It’s possible that after surgery, Fergus may go onto ‘watch & wait’, being MRI scanned 3-monthly to check for any growth or signs of tumour progression (transforming into a higher grade tumour, which is something they nearly all do eventually). Life may go back to some kind of normal.

The worst case doesn’t need to be spelled out. She reminds me that there are reasons to be positive. Fergus is young, fit & healthy, the tumour is operable & being in the parietal lobe is favourable compared to a frontal lobe, as it is unlikely to affect his personality.

I try to resist using Google to find the statistics on life expectancy. I fail. The chances of living for 5 years are more depend very much on the grade & type of tumour, but seem to be around 50% if it is grade 2 or more like 20% if it’s grade 3.

It’s a lot to take in.

Wednesday 5^th September 2018

It’s the first week back at work after a wonderful, relaxing holiday in Cornwall. We’ve been laughing & joking, swimming in the sea, BBQ-ing on the beach & generally having a happy, chilled-out fortnight at Ferg’s parents’ farm. They more-than-generously gave over their house to us, enabling us to spread out, relax & really switch off from life.

The first week back to both school and work comes with the usual stresses of new uniform, misplaced train tickets & far-too early alarms. There’s also a first class letter addressed to Fergus.

I knew he had an MRI scan just before the holiday. It’s the last in a long series of tests that he’s been subjected to since the seizure. Everything has shown ‘no issues’ to date, and the last neurologist we saw descried the MRI as ‘just a formality – they’re not going to find anything’. So no big deal. Except that someone had take the trouble to write (hand-write) ‘First Class’ on the top of the envelope. That seemed a bit, I don’t know, over the top? Don’t you think?

The appointment clashed with a meeting at my work. Do you want me to come with you? No, don’t be silly; it’s going to be fine. And anyway, if anything was wrong, you know what I’m like – I’d rather be on my own! So off to work I go, over the Pennines to Manchester, a good 2 hours door to door. Promise to phone as soon as you get any news!

It’s a hectic day. We manage to speak on the phone in the morning. We failed to secure tickets to a gig we really wanted to go to. Gutted! Oh well, I quip, there’s still time for the most important news of the day to go our way!

I announce I am going to leave my phone on vibrate & that I may need to take a call at the start of the meeting. You know, just in case. Agenda points come & go. I check my phone. More talking. No calls. It gets to my big moment. I launch into an impassioned speech, hoping to win the room over & gain approval for my proposal. The phone rings. I leave it to ring out. It rings again, immediately. I turn to my colleague & say, “Can you take over?” and walk out of the room.   As I answer the phone, I hear the tone of the breathing.   I look at the blue furniture & think, this is the last thing I’ll see before I know that Fergus has a brain tumour. I don’t like walking out of that room any more.

There are tears. His and mine. He never cries. He sounds so small. My enormous 6’6” husband sounds tiny. I grab my bag & set off down the stairway, forgetting that this cuts off the phone signal. I get to the door, then realise I can’t do this on my own. I’m crumbling. I turn back. The phone signal returns. A text – ‘Please come home’. I’m on my way. But what is the fastest way? I take a breath. What to do? I re-enter the meeting I’ve just left and announce to my boss, “My husband has a brain tumour, can you drive me to Leeds?” To his credit, he doesn’t miss a beat. “Yes”.

It’s a long way. Actually, it’s not a long way, but the motorways between Manchester & Leeds are shockingly inadequate & it takes far longer than it should. We have some time to talk, and for me to make some calls. We make a list. I call Fergus. I call the specialist nurse he’s been assigned. I call Fergus again. Mostly, I cry, and I rant & rave at the injustice of it all.

Thurs 7^th June 2018 01:55am

I awake suddenly, acutely aware that something is wrong; very wrong. I heard a cry – a shout. A scream? It’s not the girls. It’s in this room. It’s in this bed.

A choking noise. A guttural, desperate choking noise. Fergus. He’s not breathing. I turn him over, reaching for the bedside lamp as I pound his back with my fist. Thud, thud, thud. Are you OK baby? I roll him back over. Shit.

This isn’t what happens. He should breathe & say don’t worry, I’m fine. Make a joke about me over-reacting. But he’s not there. His eyes are not there. Where they should be there is only white. It’s not right.   And he’s not breathing.

Training. Somewhere in the back of my mind I remember some training. ABC. Airway, breathing, circulation. I need to check his airways. So I open his mouth. Or I try to. But I can’t. That’s not right.

Why can’t I open his mouth? It should open. I prise it with my hands until they hurt. I’ll pay for that tomorrow. It makes no sense to me. I shout. Are you there? Talk to me! Stop messing around, Fergus! Talk to me! I hear myself saying, “Am I calling an ambulance?” How much time have I already wasted?

999 what service do you require? Ambulance. Is the patient breathing? No. Where are you? Address. Postcode. Please hurry. Help is on the way. Tell me what happened.

Instructions. Control. Do this. Stay with him. Count for me. Questions. Structure. With impressive speed the right course of action is determined. He starts breathing. He starts breathing. He actually starts breathing. So do I. OK, sobbing actually.

Blue lights on the curtains. They’re here. I have to find someone to watch the girls – I can’t leave him like this. A series of calls with no answer until I remember Yeni, breastfeeding her youngest, and strike gold. Her other-half, Ferg’s brother Kieran, is on his way (thank you).

Fergus is awake. He says some random strings of words like, “What was that swimming pool thing we went to?” Perhaps he’s been underwater. He keeps asking me why there are strange people in the house. I resolve to make the best of our new life together, being his full time carer & making him feel safe even though he has clearly lost his mind.

How long did the seizure last? People keep asking me the same question. Around the 5^th time I’m asked, I start to think this must be a really important bit of information that I simply cannot estimate with any accuracy. Then I realise I can check the length of the 999 call on my iPhone. The seizure started just before, and ended just after the call. It’s a 7 minute call. There’s a few raised eyebrows at that. I think nothing more of it for now.

An hour later, in A&E, he’s surfacing. His lucidity steps on by the minute & pretty soon we are chatting away – he’s struggling to believe my side of the story. Tonic-clonic seizure, they say. He is prodded, poked, injected, sampled & scanned, and then sent home with a list of appointments to expect in the post.

Oh – and he can’t drive. For at least 6 months. Which is extremely inconvenient for everyone.

We laugh about it the next day. I secretly google ‘first time seizure lasing 7 minutes’.   Turns out they are generally caused by major head injury, stroke or brain tumour. Wish I’d not googled that! Ha-ha LOL’s – as if!

You may have read about my family before. We’ve certainly had an online presence over the years. Maybe you know us well, or maybe you just came across this blog by chance.

In any case, this blog is going to be a bit different to our previously shared musings. By its very nature I’m afraid it can’t be the joy-filled story of a new triplet fatherhood [link not currently working] ; nor can it be the enviable ‘let’s ditch the rat race and travel the world’ of travels with triplets https://travelswithtriplets.com/category/before-we-go/

With the risk of sounding like Lemony Snicket, this is rather a more unfortunate tale.

It’s the story of Fergus’s brain tumour.

There’s some back-story here to fill in. As I write this on 12^th January 2019, it’s important to realise we’ve already been on this journey for 18 weeks and 3 days.  Or 30 weeks and 2 days; it depends on how you want to count it. Perhaps I should have started earlier.