T +16

Last night we went to the West End to see ‘Dreamboats and Petticoats’ starring Alexis Gerred who is our friends Sarah and Julian’s godson. It was a wonderful production full of great music and Alex was stunning in the lead role. I managed to sleep all the way there and all the way home again. Funny how I can sleep in the car but can’t sleep in my own bed.

This morning I had a lovely, lazy lie-in and then we had a big Ulster fry for breakfast. We were meant to be over in Ireland next weekend but obviously had to cancel it so this is a very poor replacement. We phoned the ‘strictly no refunds’ airline and the ‘strictly no refunds’ internet hotel deal and they were both lovely. Although they can’t refund, they have moved our reservation out a year and have waived any change fees so we will get there, just not any time soon.

Languid Saturday mornings are such a treat and whenever we can we make the most of them, usually drinking pots of tea whilst devouring the papers. Adrian reads the sports pages and I read out our horoscopes and we laugh at their inaccuracy. But I just had to share today’s:

Adrian (Leo)

Forging deeper bonds with those you care for, and making sure they know you will not let them down, should be your priority this week. A new ambition may preoccupy you but this is not the time to take unnecessary risks.

Me (Scorpio)

Making progress with a new project may seem hard this week. The delay could be a blessing in disguise though, so do not try to force the pace. If you relax and wait until you see your way ahead more clearly, you could start to see your situation and your options from a new perspective.

I kid you not.

After breakfast Adrian painted my toenails. Chanel Rouge Noir. We chose the colour together as we felt it trod the right line between cheerful and morbid – a line we tread daily. Today will be mainly spent changing all the beds and filling the freezer with more food. We have visitors arriving from Canada, Germany, Ireland and the US over the coming weeks so I want to make sure everything is in order.


T +15

The last couple of days have been a blur. Phone calls, cards, lunches, bag packing, list making, cooking, trips to the theatre. We are trying to pack as much into this week as humanly possible. Which also means packing as many calories in as I can. We have been feasting like lairds this week as I savour all my favourite things and relive some of my favourite experiences. I want to build a bank of happy memories for when I need to escape the hospital ward. I can’t physically escape but I hope that I shall be compos mentis enough to travel in my head.

I have been told I am second on the list for surgery on Thursday and should be going in at around midday. I am glad to be second; it gives my surgeon time to get over his hangover and to practice on someone else first. Perfect. I probably won’t be up to visitors for a couple of days as they may well keep me in a drug induced coma over the weekend. No change there then.

So this week has really been making preparations for next week, including drafting a will and an enduring power of attorney. Sitting down and talking about what might happen is horrendous, but I urge you to do it. I feel it is like an insurance policy or an umbrella – if you have one you won’t need one. So I have divided up my worldly debt and decided on who is having which shoes. Anything else seemed too trivial to worry about. Strangely enough the person to whom I dictated my will was Simon who kindly came to the house to take my instructions. Now when one meets ones ex after a period of time one wants to look one’s best. However, this morning I managed to slice the end off my finger which has bled profusely all morning. Also my sight is particularly bad today and I am clumsier than usual (hence the knife accident). I have managed to partially sever my right index finger which is my eye makeup/blusher blending and hair straightening  finger so the make-up and hair didn’t go so well. Add to that my compulsion to cook as if we are about to enter a nuclear winter and coupled with the clumsiness and the need to keep my bleeding stump above my heart I managed to drench myself in blood, chicken carcass and boiling stock. Then the doorbell rings and this bleeding, offally, greasy, mad haired woman limps to the door, bumping into the furniture. At least I can say I am of sound mind and body!

Today Father Francis said a Mass for me at St Benet’s Kemerton and on Sunday Father Jim will say one on my behalf at Corpus Christi Wokingham. Next week whilst I am having surgery the nuns at Arkley will pray for me throughout. Today a lovely prayer and medal of Saint Charles of Argus arrived from Iris’s boss Gerry in Ireland and a handmade card from Adrian’s Uncle Jim and Aunt Anna. My Uncle Dave sends me a card from Canada every day. I am struggling to understand how my current circumstances fit into God’s plan for me but I understand a little more every day. My faith is not diminished and while Tarquin won’t be with me forever; people’s kindness, their love and their prayers will remain with me always.

T +13

T +13

A letter arrived today from the JR saying they would like to admit me on Wednesday 4th August and that my surgery is scheduled for Thursday 5th August. That’s next week! I guess we won’t be going to Ireland on Friday 6th then.

Adrian and I sit down at the kitchen table in shock. One week today. This means that I will have had my surgery a full two weeks before the NHS were to perform my MRI. Thank God (and Mum) we were able to get a private MRI scan done super fast. After a restorative gin & ginger beer (our summer tipple of choice) we talk about our plans. There is no way we can organise a wedding in a week so the original date of 21st May 2011 stands. At least it will give me something to strive for – to be healthy, slim and hirsute by May next year. And as Adrian put it, at least having the surgery now means I will be home in time to cook his birthday dinner!

I guess there is no benefit in waiting (quite the reverse from a clinical point of view) and the sooner I have the surgery the sooner I will start the recovery period. So all in all it is good news. I think.

My beloved Silke went today. My brother-in-law Gareth is going to make her look gorgeous and sell her to some other lovely lady who wants to pose around town in a Mercedes convertible. The roar of her (2.3 litre turbo) engine as Dad drove her away was a wonderful but sad sound. Still, I was born to be chauffeured and as I told Adrian on his umpteenth ‘driving Justine around is driving me around the bend’ trip of the week; being chauffeured in a Jaguar by a tall, dark, handsome driver is not at all bad!

T +12

Today is the day we meet the neurosurgeon. You know how people say “it’s not brain surgery” well this actually is. And we are going to the John Radcliffe – the very place that caused my crippling phobia of hospitals. As a result I can’t watch Casualty, Holby City or even Scrubs (despite the fact that there is very little hospital-ness in that). White coats make my blood pressure rise and that hospital smell makes me retch.

We leave in plenty of time to get to the hospital. Parking is always a nightmare and we go a bit wrong and end up in the flats where Iris’ Uncle Mac and Aunty Mary used to live but eventually we find the right place. I know it is the right place because I begin to shake and feel nauseous. When I was 12 I spent some time at the JR. It was the most horrific and upsetting time of my young life and something I rarely talk about in detail. After the initial stay there I then had to return every 6 months for 15 years until my consultant eventually retired and we both decided it was easier just to disappear off the radar than to try and brief a new specialist. And here I was at the door.

We found our way to the waiting room (as hospital waiting rooms go it was OK. Bright, clean, beige.) And waited. We passed the time by correcting the grammar and punctuation on the posters and avoiding eye contact with the other patients.

Eventually a man in scrubs walks up and says (in a Dutch accent) “Jushtine Berrett”. I can’t help thinking that he has arrived in scrubs to save me time:

Dutch Doc: “Hey Jushtine. sit down, relax. I was hoping you would bring me shomething intereshting, but inshtead its a bloody boring tumour. That’s just so routine (yawns). Hey Adrian, why not go for a shmoke and a pancake and you can pick her up in 10 minutesh when I have got rid of the bashtard.”

No such luck.

He ushers me into his room where Tarquin is playing a starring role on his computer monitor. He then checks me over in a frankly 18th century kind of a way. I have to walk in a straight line with my eyes closed, stretch out my arms and try to put each fingertip on my nose in turn. Am I seeing a brain surgeon or taking a sobriety test? After a few questions and some Dutch humming and hawing Mr G arrives. Tall, slim, AND FIFTEEN YEARS OLD. It comes to something when not only policemen but brain surgeons look young. He doesn’t look old enough to shave his own chin let alone my head.  But I know he qualified in 1997 so by my reckoning he is around 40. Maybe he has access to good botox.

More questions, more chin rubbing and then he tells it how it is:

Tarquin is in THE most inaccessible part of my brain. If you drew a line between my ears and between my nose and the back of my head, he is in the crosshairs. Trust me to have an OCD brain tumour which feels the need to be symetrically aligned.

Not only that but the main artery to the brain runs through one part of him and he has wrapped himself around a group of blood vessels and nerves which control my mood, personality, eye movement and the feeling and sensations of my face. Nothing vital then.

Surgery will be long, complicated, risky and not wholly successful. Because Tarquin has entrenched himself right at the heart of my brain (mixed metaphor or what?) they will not be able to remove all of him. So after they have performed a craniotomy (don’t Google it unless you’re brave – basically I get a titanium sunroof in my skull) I will have to go to Sheffield to the National Centre for Steriotactic Surgery for another procedure called the Gamma Knife (which sounds like a Philip Pullman novel to me).

I am speechless.

Sheffield???  Yorkshire??? Oop North??? At least Leeds has a Harvey Nicks.

So not only do I have a brain tumour, I have an awkward bugger and now I have to have two operations. One of which takes place north of Watford.

I am now about to describe them, so those of you who are squeamish (like me) please look away now.

The craniotomy will involve shaving my head (!), cutting a ‘window’ in my skull, pulling apart the frontal and temporal lobe, resecting as much of Tarquin as they can, then getting the hell out of there before causing my brain to bleed too much, affixing a titanium plate and sewing me back up. This is followed by a couple of days in ICU, a week in hospital and 6 weeks recovery at home.

After I have recovered from that they will ship me to Sheffield for the Gamma Knife procedure.

A Gamma Knife is a device used to treat Tarquin and his ilk with a high dose of radiation therapy in one day. The device will aim gamma radiation through a drill hole in my brain. The treatment takes several hours during which time my skull is screwed into a head frame (more shaved bits of scalp), Tarquin will then slowly die over the next two years. Even after all this there is no guarantee I will get my sight back.

Sounds like a piece of cake. Don’t know what I’m worried about.

Mr G says that we can’t wait and that once he has spoken to Sheffield I should expect to come in for surgery within the next 2-3 weeks, but before that I will have to come to the JR for an angiogram. I should just await his call.

One thing I have become adept at is waiting. So we thank him and his Dutch cohort and beat a hasty retreat. Adrian wants a coffee (probably needs is a better description) but I just want to be gone from the place so we head home in shock.

It is all horribly real. I have a brain tumour and I am having brain surgery.

I really hope my modest nighties turn up from Marks & Spencer on time.

T +6

Great news – I have an appointment to see the neurosurgeon at the John Radcliffe Hospital at 9am on Monday 26th July 2010. Never have I more looked forward to an early start on a Monday morning.

Daddy came today and took me to the pub for lunch to take my mind off things – a wonderful Dad-type thing to do.

I have been trying to count my blessings and have realised that there are certain benefits to being partially sighted:

You can’t see your own cellulite (or indeed anyone else’s)
You get chauffeured everywhere and doors held open for you
You get to hold hands with your sweetheart in public on the pretext that you need support
You can’t see what a mess the kitchen is in
You never have a bad hair day – or if you do, you don’t know about it.

I realise there are lots of things I now do by touch and sound. Filling the kettle or pouring a glass of wine is done by sound. Drying and straightening my hair or chopping veggies is done by touch, Putting on make-up is a hit and miss affair. I fear I may be wearing more than normal as I keep adding and blending and adding and blending until I can see something in the mirror. I am probably looking like a cross between Bette Davis in ‘Whatever Happened to Baby Jane’ and a drag act but my loved ones are too polite to tell me.

Roll on Monday morning 9am.

T +5

Still no news from the John Radcliffe. I did get a letter from the private hospital on Saturday, but that was just the bill!

I would like to thank everyone for the emails, texts, cards, flowers, cakes, fruit, chocolates and sleeping tablets. I am so very blessed to have wonderful friends and family rooting for me. If I could harness all the love, prayers and positivity I would be healed tomorrow.

But my biggest thanks must go to the person who has been by my side every second of the last three weeks.

I love you Adrian – you truly are Amazing.

Tarquin +2

Feeling better today thanks to a decent night’s sleep and a good chat with some good friends on both sides of the Atlantic. I will beat this. Tarquin and his ilk shall not prevail. Now just waiting to find out when the team at John Radcliffe can see me. So more waiting. But at least the waiting room at Barrett Towers is beautifully appointed.