Loved it loved it loved it

The Macmillan ‘Understanding Brain Tumours’ booklet Sarah had given me represented safe reading material, so it was time to start cautiously learning more. Brain tumours can be primary, like mine or secondary, where cancer somewhere else in the body has metastasised and grown in the brain. There are over 120 types of brain tumour, and they are graded from I to IV based on the speed and aggression of growth. Add in all the various parts of the brain that could be affected, and people’s age and health at onset, and it becomes virtually impossible to make generalisations – nearly every case is pretty much unique.

At this point, I was very much convinced that having a tumour was the bad thing. That the biopsy was about treatment choices, and the result would give no more than a degree of badness. Grade I, grade IV or anywhere in between, it would have to be treated, and that treatment was unlikely to be aromatherapy.  It would be invasive and gruelling. Now I know that my disinclination to recognise the different effects, treatments and outcomes between the grades of tumour was utter balls, but at least it meant I acknowledged that there would have to be some significant changes to life whilst whatever treatment I would have was going on. Possibly for the rest of my life.

Chief amongst these changes would have to be work.  Prior to all this nonsense, I owned and ran an online business, loveitloveitloveit, selling kids clothes. Truth be told, after seven, nearly eight years I was pretty bored of it and was planning to close it down after the Autumn/Winter 17 season.  I had been working on setting up a new business to take its place. The new business was the first to be abandoned (for now, anyway). If concentration, the ability to commit to appointments and even travel to them would be a problem, it would have to go on the back burner, to be reignited when, or if, possible.

August and September are some of the busiest times for a seasonal clothing business. All the new winter styles arrive and have to be booked in and sorted, listings created, photos edited, marketing done and so on for each of the hundreds of styles arriving. Add in picking, packing and despatching orders, and it’s a lot of work, certainly more than I thought I’d be able to cope with, and unfair to place the additional burden on my family.  There was no time to recruit anyone to manage it during my treatment, and no option to bring back people who used to work for me. Given that I’d worked rather than call an ambulance after the first two seizures, I also had to recognise that I couldn’t trust myself not to prioritise work during treatment. So the business would have to close down, and given the biopsy was scheduled for 9 days later, it would have to happen fast.

Heading in to an uncertain future by chucking unemployment and no chance of a new income in the foreseeable future in to the mix is perhaps not the wisest decision ever, but there seemed to be no other choice. The decision was successful in the short term, as it was all hands on deck, all week, to get all the orders out of the door. None of us had time to think about anything except picking, packing and processing postage labels. It was a very effective distraction. After a few days, it looked as if a horde of locusts had been through the large stock room. There was virtually nothing left.

Closing the business was bittersweet. I was, to be frank, pig sick of the whole thing, and so had lost sight of the reasons I started it and had loved it. Messages from customers all around the world full of kind words about what the business and its ethos had had meant to them and their kids were very touching but also reminded me of that original passion. Perhaps I had achieved something worthwhile after all.

The pre-op assessment came in the midst of this madness. It was my first trip alone in to town since Before. The world still seemed thrilling and beautiful in a way that we usually only notice in a breathtaking view or sunset. Walking up the hill to the hospital I saw a cigarette butt in the gutter. In place of the usual speckled orange paper at the base, this gasper had shiny blue paper. It was exquisite. I stopped to look at it, completely captivated. This is where we officially are now – the Being Enchanted By Slightly Unusual Litter Stage of Life. I’m like an overgrown toddler, but with lots less energy (and as we know, better bladder control).

The Sister doing the pre-op assessment is called Tracey, and she’s magnificent. Her room is *covered* in post it notes reminding her to call this person, check that measurement, pick up some milk on the way home. She’s the kind of person who wears one pair of glasses, has another perched on top of her head but still can’t find her specs. She has three of us to assess this morning, and she balances us all simultaneously, like spinning plates. The amount of time needed for one of us to go for an ECG is the miraculously the exact amount of time needed for her to do the blood pressure and lung capacity tests of a second and for the third to get changed ready for examination. We never even see each other. She’s *that* good.

And then I see Damian again. He takes me through the biopsy procedure. They’ll anaesthetise me, put a special frame on my head, then do an MRI with the frame on to get precise co-ordinates for the tumour, then back to the operating theatre where my hair will be shaved, a hole drilled in my skull and a sample of cells extracted from the tumour by a fine needle directed by a robot using the computer coordinates. A pathologist will be on hand to check there are enough cells to biopsy and to request further digging if necessary.

Damian: What? You look horrified! Is it the hair? You shouldn’t lose too much

Me: No, as long as you don’t make me look like a medieval monk, it’s fine. I’ve got plenty to spare. It’s the frame. [for some reason I thought the frame would have to be screwed in to the bone, like when someone breaks their leg really badly]

Damian: [promises not to make me look like a medieval monk, then goes in to a long explanation about the pressure per square inch required for the frame in comparison to the psi needed to pedal a bike] … in short, it’s unlikely to even break the skin. It just needs to be on firmly enough that it won’t move.

Me: [starts breathing again]

The whole biopsy involves a heck of a lot of to-ing and fro-ing. Apparently, I’ll be under anaesthetic for around 4 or 5 hours, but the actual operation will only be about 10 minutes. Oddly, this makes me feel better, even though it should have prompted a lot more questions. Later, my family helpfully ask all the things I should’ve asked, and I have to make up the answers. Hopefully they don’t realise.

My brother: What do they fill the hole in your skull back up with?

Me: Chewing gum.

We then go through all the risks of the procedure. Each is only about a 1 or 2% risk, but there are lots of them. “Hang on” I say, “aren’t we up to about a 26% risk now?” No. The risks are concurrent, not cumulative. Damian considers this a ‘unique’ question. I think we all know what that really means. He then tells me that the MRI scanner is booked out for the paediatric department on the morning of the operation, so I won’t go in until the afternoon. He’s profoundly apologetic, saying that kids can only be bumped in the queue with an act of parliament or something. I have to wonder what kind of monster he’s used to dealing with that he thinks anyone would be even vaguely cross about this.

There’s only one more question that matters.

Me: What do you think it is?

Damian: (kindly) On balance of probability, it’ll be malignant.

Me: But no matter what the outcome, are there options for treatment?

Damian: Yes. No matter what the grade, there are options. We can treat this as aggressively as you like.

For now, that will have to do.

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