The Alien Diaries : 18/03

“It’s like an alien inside me — it doesn’t belong there and I want it out.”

It started when I got back from my trip to the USA. I’d been unwell with flu and hit hard, spent most of my trip in bed in the hotel. My wife hadn’t wanted to tell me, to spare me the worry whilst I recovered and flew back.

“I knew something was wrong. That’s why I asked straight away for a mammogram. You know. I had my suspicions so I hassled to get a checkup.”

At this point, the normally wonderful NHS had a bad moment — the urgent followup letter got lost. My wife, thankfully, didn’t let this lie. She chased them and found they wanted to see her, so whilst I was lying flat in Austin, Texas, she was having a biopsy and ultrasound scan.

She told me that they were pretty sombre and knew they’d found something. The biopsies would tell them more, but she was not feeling positive.

I remember precisely where I was when she told me. I was sitting in the livingroom and she said “I got some bad news from the hospital whilst you were away. I didn’t want to tell you and have you worry as you’d been so ill”.

I was pretty freaked out — Julia had nearly died from a brain bleed 4 years ago (more on that later) so I mistakenly assumed it was something to do with that. Oh shit. What’s wrong? What did they say?

And it turned out to be breast cancer. Oh well, that’s alright then. I assumed initially it was some bad news about the mysteries of her brain, something pretty final or huge enough to keep from me, even for a couple of days. And I was right. Just not about the cause.

So yesterday we went to the hospital together, to discuss with the consultant the result of the biopsy. A pretty big tumour in the left breast and cancerous cells detected in the lymph nodes in the armpit. Bad on one hand due to the size yet treatable. I don’t know why the consultant was so sombre with the news — I’d hoped that there would be more positive thought mixed with the news but it was a grim conversation for anyone i guess.

Until the MRI scan happens (we’re waiting for an appointment) we don’t have a treatment plan. We asked about likely routes and it was probable that chemotherapy would be used to reduce the size of the tumour (it was too big to operate on right now) and then perform surgery and mopup to remove the tumour, depending on response.

We were both pretty shocked once we left. I’d driven over to Kings hospital in denmark hill so the drive home and some of the calls we had to make were tough. But amongst the gloom, a serendipitous thing happened that made me determined to fight, to do everything in my power, to use the very force of my being and my love for this lady, to lay down anything or everything I have for her. To stand beside her, support her and sometimes cry in private, but to be as strong as I can — to follow her lead.

I cried when I spoke to Michael, a very dear friend. Abi was very supportive. My sister and I had a long chat and she more than anyone helped me to stay positive. I was in bits when I first knew — and I’ve had just 24 hours to try and reassemble the atomised and smashed thing I’d become. As much as I know I’ve cried, wailed and railed against this — I also know that the way she’s approaching this is with cheerful optimism, trust in the great doctors and nurses and faith that we’ll be by her side. How can you wallow in self pity when the person who’s this ill remains positive.

Part of me is smashed and stamped on. I feel destroyed, terrified, worried — I can’t sleep properly and it’s always there. From the moment my eyes open to the last thing at night, when I look at my sleeping wife, there’s the fucking cancer. Always there, like a big fucking vulture sitting there on my family — hard to avoid, even if you’re pretending it’s not sitting there, eyeing everything up.

So I had to ice work and put everything on hold. I’m sorry for having to do that but we needed time to talk, to sit down with our daughter and to just do some normal things. To watch TV together, to eat dinner, sit on the sofa and play with the pets. To forget, in that small moment of normality, that the vulture wasn’t there and that in this small bubble of time, there were no boundaries. It would always be thus. And in some fleeting moments, we were free of you, cancer. And that’s something to know.

Today I spoke to Michael (Aagard) who’s been a great support to me through this time. We didn’t talk about the vulture — just some work stuff. We’re going to do a couple of hours on a project this afternoon. Something to keep me busy and allow me to focus on something normal,

My wife doesn’t and wouldn’t want pity or sadness for where she is. She joked that after surviving a brain bleed, you “don’t get that lucky twice” — referring to her bad news now. She’s my friend, companion, lover, support, inspiration and role model — in so many ways — and yet she can still laugh in the face of things like this, even when I’m trying not to fall apart.

Many people wonder how I managed to do so well in my career or have the motivation or guts to prepare, speak and inspire people. Behind this guy, there is a very much greater woman than the man you see, and so she deserves most, if not all, of the credit.

And I’m writing this knowing I’ll also have to start looking at some analytics data shortly, sending off some urgent proposals. The world turns. Things go on. I have to keep going and face life, work, everything for all of the family — and as hard as that seems, with friends and her cheerful optimism, we will survive. My daughter is a blessing too and whilst she needs every support herself, she’s also mature, loving, supportive and inspiring to her parents. The love of our small family and our best friends will help us more than I can imagine.

And back to yesterday and a memory to treasure. The sun was out, the lawn mowed here at the house for the first time this year. It was hot! And Julia and I skipped out and took the dog for a walk. We talked. We laughed. We smiled at the dog, making us happy without knowing it — just being his cheerful, irrepressible, wiggly little self. And we walked through the crying, the absolute fucking terror, the fear of the unknown and came out the other side with daffodils, croci, snowdrops, the first leaf in the rose garden at greenwich, the dog eating a blueberry muffin with us at the park tea stand.

And that afternoon won’t be remembered in some rosy way — I wasn’t trying to fool myself it was a perfect afternoon and one to treasure, in aspic, sealed in my heart forever. It actually fucking was a wonderful day. We spent 4 hours out walking and somehow broke through. We’d work hard on this and do everything needed to make it work. We’d stay positive and normal, going about things as best we can. We’d get the treatment plan step understood and get as much help and advice as possible. We’d beat this thing.

And so, a thing of terror became a conduit for a thing of beauty. Regardless of what happens or what we go through, I’ll always have that afternoon. Of peaceful, understated and deep love, discussion, companionship — that day will forever be ahand on my shoulder, fingers twisted round mine, a light kiss on my lips. And you should know this is no ordinary love and no afternoon is more special to me now.

That lady I nearly lost I can’t bear thinking about losing again — I thought once 4 years ago — that she’d gone — and was so lucky to have her around. I don’t want to go through this again, like a slow car-crash — but I have to stop whining.

She needs me to be strong yet I also feel weak. I want to support her but I also want to cry and fall apart with the sheer fucking injustice of it all. So a knife edge I seem to inhabit — very much feeling this but having to be careful about keeping things sane, normal, practical. How will I support her when I’m finding it so hard myself? Is it normal to feel guilty about not being able to feel guilty enough about something?

It’s enough for now to write this. I just wanted to write down how terrified I was about this and yet how wonderful a day I had. I’m very lucky to have a flexible job that means I can support her and be around a lot, whilst still keeping the bills paid. That’s something that’s priceless right now and will really help during the chemo.

And if you know me and are wondering what to do — don’t try too hard please. Just be normal — by my friend, my fellow practitioner, my buddy, my family member, my industry colleague — just be yourself. Keep me busy. Talk to me about stuff. Do ask how my wife or family are getting on. If you can just capture a normal moment for me, as if none of this is happening — if we can laugh at something good just to keep the vulture at bay, for however long it lasts, your gift will be treasured.

My wife’s in the kitchen now — back from a trip. I print this page and go back to sometimes pretending none of this is happening. I will need to write more later but for now, this was a help and somehow, I feel a little less abjectly terrified and a little more ready for what lies ahead.

Philip K Dick is one of my favourite writers and his short stories are some of the best (IMHO) in science fiction (Robert Silverberg deserves a mention here too — especially for the Island of Dr Death — but I digress). One of the constructions he uses in his stories is the fact that beneath the seeming skein of reality, there are other realities. That beyond what we see at the surface, there may be aliens, danger, another world lurking just around the corner into another dimension. And yet this is true of my life today — a thin skein of normality punctured by this dreadful thing. So little a barrier between everything being normal and that changing. Treasure every day and moment that you have. That’s where I’m going now.

C.