A painful but necessary update

Forgive me reader. It has been many weeks since my last blog entry. I have been struggling with recovery and also struggling with revisiting this part of my journey in order to write coherently about it.

On re-reading my last entry I see that I was so full of hope that the Gamma Knife surgery would bring an end to Tarquin. But he is a stronger opponent than I gave him credit. So I shall set out the facts as they happened, pieced together from my recollection and that of those who were with me.

We trek up the M1 to Sheffield and I am swiftly admitted and taken downstairs to be fitted with the head frame that will hold me in place during the treatment. As I go in a lady in her 70s comes out complete with head frame and tells me not to worry, it doesn’t hurt at all. I am bolstered by this kindness.

In the room Mr K and his team are ready and they begin to attach the frame. To do this  they inject me with a local anaesthetic and then drill tiny holes into my skull through which they tighten screws by hand with a screwdriver. Surreal. Two at the base of my head at the back and two on my forehead. The ones at the back go in pretty easily. I can feel the screw threads biting on my skull but there is no pain. The one on my left forehead causes discomfort but no real pain but the one above my right eye, the side where I had my craniotomy, causes me such pain and discomfort that I have a grand-mal seizure. On recovery even the nurse looks pale, but the doctors carry on screwing the frame to my head through my blood-curdling screams.

I am wheeled up to my room where Mum, Dave and Adrian are waiting for me. But I am not me. I can’t talk properly nor focus on their faces. My nurse explains I was ‘taken poorly’ during the frame fitting and puts me on the bed to wait. I am given painkillers, sedatives, steroids and an anti-depressant. Adrian acts as photographer.

The latest in Brain Surgery Chic

Soon they return to take me to the Gamma Knife Surgery Suite where a radiographer will deliver many hundreds of doses of gamma radiation through my brain to the centre of Tarquin. I am clamped into the machine, my head suspended by the frame. My head feels so heavy just hanging from two screws in my forehead but thankfully the drugs help me, as does the soothing music. Although I can never listen to any of those songs ever again. Over 200 rods are attached to the head frame, each one delivering a measured dose of radiation before the machine moves me by mere millimetres to deliver the next dose and so on. Most treatments last between 5 and 10 minutes.

One hour and a quarter later I am released from the machine and wheeled away to have my head frame removed. Again the screw above my right eye causes me to scream out in pain. I ask the nurse why the elderly lady lied to me about how much it hurts. The nurse explains that she was just trying to help me through it. I can do without that kind of help.

Back in my bed I can see that everyone is pleased to see me back safe and sound. The elderly lady (the liar) is in the room opposite me and is sitting up having a cup of tea. Having taken two paracetamols she expects to go home in an hour or so.

I am put into bed, the sides are raised and the nurses begin my routine of two-hourly morphine injections. The rest of the day and night are a blur, my only lucid moments coming when the nurses arrive to give me my beloved opiates.

The next morning (Friday) I am determined to get out of the place. I know I must appear lucid and pain-free if I am to escape. They let me go home with no drugs other than ibuprofen, paracetamol and codeine. We haven’t gone 10 miles before I have a petit-mal seizure, and I continue to have these over the next hours and days. The pain is unbelievable but I bear it as we have been told so many times that this is a pain-free procedure. My mother tells me that I must have a low pain threshold, but I can’t find the words to explain anything, let alone tell her how much I hurt.

At home that weekend Adrian says I was incoherent with pain; crying out and passing out. But as it is the weekend there is nothing we can do other than follow the advice we were given. On Monday morning we see my GP the wonderful Dr H who phones Sheffield to berate them for discharging a patient without any pain relief or anti-inflammatories. He suggests we get back in the car and drive to Sheffield.

We do so and Mr K sees us immediately. He has come in specially. Another MRI reveals no sinister cause for the pain. It is simply that in attaching and detaching the head frame the bone flap over the site of the craniotomy was moved and then moved back, causing pain and disturbance to the part of my brain which causes epileptic seizures. He shows us the MRI of Tarquin taken that morning. He is enormous. Much bigger than before my craniotomy. As well as completely devouring the optic nerve to my right eye, he has now distended the nerve to my left eye. Mr K describes him as a “big beast” and says he has only treated one tumour larger than Tarquin and that patient had to have two procedures six months apart. He thinks that 75 minutes of treatment should stop the blood flow, eventually killing the tumour. We won’t know if the treatment has been successful for a full 12 months. He says he will see me in March 2012 to determine whether Tarquin is indeed dying or whether he needs a little more assistance on his journey. He increases the dose of my epilepsy medication, prescribes as many painkillers as he can and sends me on my way.

The extra epilepsy drugs make me very dopey and tired. They stop me thinking clearly, make me stumble and fall and forget my words but at least they stop the seizures.

I have now had a headache for 8 months, but never as bad as this.

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About tarquinchronicles

I have recently been diagnosed with a brain tumour which I have called Tarquin. Tarquin was a Roman emperor who was inordinately cruel and vicious but who was eventually banished and died in exile. This is the chronicle of the rise and (hopeful) fall of Tarquin the Tumour.

12 thoughts on “A painful but necessary update

  1. I am so pissed to read this. UGH! Effing meningioma bastards! 😦 Much love & good thoughts from your fellow skull-based, monocular epileptic.

  2. Hi. You don’t know me but I have followed your progress. You are an amzing woman. Simply amazing. I really really hate that bloody Tarquin!

  3. Hi Justine, its been a while since the NI days but I am reading this and can’t believe what a resilient bugger terrible tarquin is. If positive words and love can overcome him (with a little assistance from the docs) then it is only a matter of time till the bugger is well and truly banished for good. Sending you (and Adrian) all the love and best wishes in the world. Laura x

  4. Heartbroken that you are still suffering so badly. Hopefully lunch, champagne and some amusing goddess humour may help xxx

  5. Dear Justine –
    David and I are thinking of you & words are just inadequate. It’s not an easy time.:-(
    Just want you to know we care & sorry to hear you’re suffering so much & hope the pain goes away. Hoping Tarquin can be destroyed for good.
    Love Carole & David Cox

  6. Hi cousin-in law,

    I am so sorry that you have endured so much, but rest assured that you married a good one, but i’m sure you know that!!
    Stay strong, keep the faith ‘cos Tarquin is going DOWN!
    Waiting is so hard, I can’t even begin to imagine, but I hope you find comfort, relief and enjoy married life as a ‘Grace’, welcome to the family!

    Claire

  7. Hi Justine, I work with Julian Paye and he introduced me to your blog. You’re a truly amazing woman–with an absolutely amazing husband!– and I just want to let you know that you’re constantly in my thoughts and prayers, and I really mean that. When you’re having those difficult days, please remember we’re all praying for you to get through this. You’re going to beat Tarquin!
    Oh and when this is all over, please write a book! You are an absolutely brilliant writer; your sense of humour just cracks me up!
    xoxo
    Bukola

  8. Dear Justine
    My name is Wilfredo Aqueron, I am a Brain Cancer patient (pontine Glioma). The reason for my posting was because i was looking for help with a Documentary on Cancer survivors, but after reading your blog i have to tell you, I really admire you. you are a real warrior, and this is coming from the guy who have a tattoo on the forearm with the message “I am not going to die at least till the year 2038”. keep fighting.

    “love and respect”

    Wilfredo Aqueron
    thanks2myc@yahoo.com

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