We quickly fall into a morning routine of emptying, showering, dressing, administering and eating. Tori leaves me an outfit on the bed and goes downstairs to prepare me a fruit salad and to lay out my cocktail of drugs on the table, following a chart she has made for herself and arranging the drugs in alphabetical order on the piano.
Today I have an appointment with my spinal surgeon to see if it’s time to take my neck brace off. She takes multiple x-rays of my neck, including one head-on with my mouth wide open so she can see the top bones that plug into my skull. It looks fucking cool.
I wait nervously as she studies the x-rays. Please don’t be another month.
“OK”, she says, “your C1 hasn’t moved at all since your last x-ray which means you’re stable. I’m pleased with that. You’ll always be a bit wonky I’m afraid, but it is safe to take your neck-brace off now”.
I am overcome by this information. Everything is happening too quickly. I feel like I should have a brass band or something here for this. There should be some sort of fanfare.
Tori videos me on her phone as the doctor removes the now very stinky neck-brace and replaces it with a soft collar, which I can take off for a few hours a day until I feel comfortable enough to go without anything at all.
My neck feels so vulnerable. Like Jelly. I guess the muscles have atrophied after three months of not using them, and I can feel every sensation on the skin of my wizened neck; the air moving, the collar of my shirt, the stretch in my skin as I turn my head gently from left to right.
In the bathroom at home I take off the soft collar and stare at myself in the mirror. Without the brace I look as if I’ve aged ten years. And why is my neck so long now?
Despite looking like a sick giraffe, I am thrilled with this latest step in my recovery. It feels like my body is slowly coming back to me, bit by bit. I am now able to touch my feet, even the one that was unbearably sensitive just a month ago, shave my legs on the shower chair, and trace my finger down the scars on my tummy and back.
What I am most looking forward to, is the day I can finally sleep in my bed with nothing attached to me. To be rid of my bandages, and the alien beige bag that hangs from my naked body as I clamber sexlessly into bed. I yearn for the time I can spoon with Mat and feel nothing but skin on skin.
Still, every time something is shed, it feels like huge progress. The wires, the dressings, the catheters, and now the neck-brace.
Something that is stubbornly refusing to go away, are the constant UTI’s, each new antibiotic seeming only to work for a few days before the familiar burning sensations return. I have also began to notice small pieces of what look like egg shells that flow through my cathing straw and into the toilet on a regular basis.
“It could be dried pus, produced by the bacteria”, Dr Barnett, our new house guest and the provider of my nightly podcasts suggests.
Luckily I have been referred to a urologist who specialises in female patients with nerve damage after trauma, and am due to see her in less than a week. But in the meantime I am finding larger and larger chunks of this eggshell stuff coming out of my body. It makes me yelp in agony as they pass down the cathing straw and leave my hands covered in blood.
This morning I look down and see that a big white piece, about the size of a small finger nail is lodged across the entrance to my urethra, stopping the flow of urine completely. Taking a deep breath and vowing to stay calm, I stagger over to the bathroom draw and locate a pair of medical tweezers and a mirror from my colostomy kit. I make a judgement call that this is a bit too much to ask for Tori’s help with and decide to battle this demon alone.
I stare at the white obstacle.
“OK”, I say to it, gathering all of my composure through a fear that this one may actually tear me open, “you are coming out of there. One way or the other”.
For the next 30 minutes I poke and prod at the rogue object, balancing the torch of my iphone up against the toilet so that it shines on the mirror and reflects back between my legs. But it’s too damn hard to hold the mirror steady enough with one hand, and I can’t seem to get a good grip on the shell.
Bang. I hear the welcome sound of the door closing as Mat returns from work.
“Mat”, I yell. “Maaaatttt”.
“Hi” he yells back cheerfully.
“Can I… erm… can I have your help with something a bit… niche”.
“OK”, he says. I hear him drop his rucksack and run upstairs, no idea of what joys are in store for him this time.
He walks in to see me sat on the loo, iPhone balanced, one leg up on the bowl, mirror and tweezers in hand.
“Look” I point between my legs. “There is a bit of egg shell stuck in my urethra and it really hurts. Can you pull it out with these tweezers?”
“Sure”, he says, seemingly excited by the prospect of a real-life game of Operation. He grabs the tweezers, deftly removes the shell without making my nose beep, looks back up at me and raises his eyebrow as if to say, “what’s next?”
Fun Fact no. 5: If you leave a Catheter in for too long, your body creates a spherical calcification around it. And guess what that calcification looks like?
“I think with all the hospital changes you had, they must have lost track of when you were due to have your catheter changed and your body has formed a shell around the balloon inside your bladder.” My wonderful new Urologist, Dr Deng, informs me. “So there is a large calcification, a bit like an egg, in your bladder that is slowly breaking up and floating around inside you”.
“Lovely”, I say, “and how do we get it out?”
“Well there is only one way unfortunately”, she says, “let’s try now. Hop up on the bed and I’ll get the camera”.
She returns, all scrubbed up, with a team of two men and a large device that looks a bit like a giant metal tampon on a wire that plugs into a machine. Fortunately, if it can be described as such, I have already been treated to a cystoscopy a couple of years ago, so I am familiar with the intolerable pressure sensation of the camera making it’s way up there, and the rush of cold water (why is it so cold?!) as they fill your bladder to give themselves a good old view of your insides.
An hour and a half of agonising prodding around, trying to use various baskets and fishing devices on thin wires to try and grab the hundreds of pieces of egg shell we can all see floating around my bladder, the horrifying saga is over.
“You’re in too much pain” announces Dr Deng, “and this is going to take a long time”, so we’re going to get you back in and put you under.
Thank fuck for that.
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