The hard wait

The first few days back at home were easy. It still hadn’t really occurred to me to worry too much about the biopsy results. The biopsy itself had been the hurdle, and had been cleared. My sister in law came to visit for a few days with her toddler son. It was a lovely distraction for all of us, especially the kids, who love their little cousin.

I busied myself wondering whether if the staples would go rusty in the shower and nurturing a gentle obsession with trying to figure out why there were eleven (count ’em, 11!) cannula holes in my hands and feet. 5 in one hand, 2 in the other and two in each foot, all bruised to absolute buggery.

Why on earth were that many necessary? Had a bunch of first year students been invited in to all have a cack handed go at at inserting an IV? Twitter kindly provided the answer. Two anaesthetists there agreed that the type of biopsy I had is a massive pain in the arse from their point of view. It requires extra long tubing that they don’t usually use, and bundling a comatose patient in to and out of MRI scanners, transferring them on to different trollies and to different rooms usually means a cannula or eight gets knocked out along the way. There’s then a need to jam some new ones in quick smart in a hurry. Speed is more important than gentleness, hence the bruising. Thank you Ed & Marc for the fascinating insight. Is it weird to want to have been a fly on the wall in your own operation to see how Keystone Cops it really was?

Inevitably, at some point, I had to recognise that the results of the biopsy would be a big deal. No matter how careful you’re trying to be when googling brain tumour related subjects, two ‘facts’ will always leap out and smack you in the face.

1. Average life expectancy from diagnosis is 18 months
2. Only 15% of people diagnosed with a brain tumour will survive 5 years

There is a world of variables buried beneath those two nuggets; it is way, way more complicated than that, and it’s kind of shitty that those are the headlines you first see, which scare you so much you can’t get to the information that explains why they’re not necessarily realistic or even true. In lieu of facts, lurid speculation is unavoidable.

What finally did me in was the kids going back to school after the summer holiday. They were both starting new schools, and taking the obligatory photo of them at the front door on their first morning, I thought back to taking their photos on the last day of their old schools just six short weeks ago. Back then, an absolute lifetime ago, I had been feeling physically and mentally fitter than I had in years. I had a successful business and was making progress on starting a new one. The only thing in my life that hadn’t suddenly crumbled to ashes in less than a month was the most important thing; a loving family and groups of friends. Indeed, I was now far more aware of that blessing than ever before. Would I be here to take photos of the kids on the last day of their new schools in 4 and 5 years time? Would I even be here to take photos of them heading off for their first day next September? Maybe not. Shiiiiiiiiiiit.

The agitation meant I couldn’t work out if I’d remembered to take the anti convulsant tablets that morning.  I rang the GP for advice. They hadn’t opened, but the receptionist promised to get one to call back ASAP. She was so sweet and comforting, trying to talk me down from a precipice of panic. Oh god. GP’s receptionists are paid to be fearsome. Snarling efficiency is top of their job description. If one of them was being nice to me, kind even, this must be serious.

All I could think of was how to prepare the kids for my death. Would they cope? Of course not. They’re too young.  My job is not done here. A surprising number of my friends lost a parent in childhood. Each and every one of them is a wonderful human being, well rounded and fulfilled in at least as many ways as those of us with all parental units intact well in to adulthood. The loss is clearly survivable, but would they all prefer to not have had to deal with that grief and bereavement at a young age? Absobloodylutely.  How would A cope with a full time job, looking after a dying wife, helping the kids through the trauma of watching their mother die, and trying to keep a household together? It’s just too much.  What if the kids started acting out because of all this, piling more pressure on to A? What if, what if, what if?

Now the wait got hard. Really hard. I stopped sleeping. The GP prescribed some knock out drops, which worked for a couple of hours but no more. Within the space of a couple of days, I was 100% sure I’d be dead by Christmas. Hoping for the best is no good when you need to prepare for the worst.  A and I had several hard conversations that week. I gave him my blessing to remarry whenever he saw fit on the proviso that a new wife treated the kids at least as well as I do/did. No wicked stepmothers round here thank you very much. If the kids were to lose one parent, it was imperative that they kept the other, so I harangued the poor bloke about staying healthy.  I consciously began to withdraw from situations with the kids that we’d usually deal with together, to give him some practice at dealing with all their needs on his own.

I wanted to write letters for A and the kids to be opened on significant occasions; 18th birthdays, anniversaries, wedding days, possible future pregnancies etc, but I couldn’t think what to say, beyond I love you, and wish I could be there with you. Who wants their dead wife and mother putting a downer on every event forevermore anyway? One hideously mawkish thing I did do was to record myself singing the lullabies I used to sing the girls when they were babies. Even now, if the girls are poorly or upset they’ll sometimes ask me to sing those songs. They mean something special to me, and I think them too. I recorded them partly with the intention that the girls could play them to any babies they may have in future, so they might know some tiny part of their grandmother. Of course, the versions I recorded are full of catches in my voice as the emotion gets too much. They sound completely pants and would serve no purpose other than to upset them, and they certainly wouldn’t want their dead mother singing really badly from the grave casting a shadow over the joy of having a new baby. It was a stupid idea.

Do you remember the stages of acceptance? Now, like it or not, I was going to go through them. Repeatedly. Simultaneously.  I was a little cross, more for the effect on others than on me, but I was definitely ready to bargain.  Whenever I see a Greggs and a homeless person in reasonable proximity, I pop in and get them a pasty and a hot drink. That’s not as tight as it sounds; this is Newcastle. Every other shop is a Greggs.  Now I roamed the streets, actively looking for homeless people to press baked goods on. Some of them probably weren’t even homeless. Not brushed your hair today? HAVE A PASTY. Briefly sitting down on a park bench? REFUSE THIS COFFEE AT YOUR PERIL. I saw a lady crying and went to console her. Turned out she just had a cold and was blowing her nose.  I tried to persuade myself that this wasn’t bargaining, that it was just being nice; after all, altruism with the aim of buying some good karma is not altruism at all. It was bollocks. There is precisely zero correlation between the number of pasties you force homeless people to accept and the malignancy of your brain tumour. Some of them probably don’t even like pasties FFS.

“The Wait is the hardest part” everyone says. “Once you get the results, good or bad, you can get on with dealing with it” Well yes, but what if they’re wrong? What if the wait isn’t the hardest part? Things could very easily get worse, and once you know the bad outcome, the kernel of hope that remains alive during The Wait must be extinguished. It’s Schrödinger’s diagnosis. The only way to know if The Wait is the hardest part is to end The Wait by getting the results, and once you’ve done that, you can never go back to The Wait. It was awful, nerve shredding, yet I still wanted to cling to it.

As the days ticked by, the texts mounted up, like a grim version of being 9 months pregnant.

Any news yet?

No

Don’t you think you should chase it up?

I’d rather gouge my eyes out with a rusty teaspoon tbh.

And then, six working days after the biopsy, one of the Neuro Oncology Nurse specialists left a message on the phone, asking me to come in for an appointment on the seventh working day, the 11th September. Auspicious date, huh? Hang on! Neuro… oncology…. that means brain…. cancer….. shitshitshit It must be high grade. But wait, breathe, neuro oncology covers all brain tumours, not just the malignant ones. I replayed the message numerous times to see what her voice sounded like. Was it heavy with the responsibility of bad news, or carefree and happy to have good news to pass on? It was professional, impervious to interpretation. The Wait would continue until after the weekend.