Chemo Cycle Four – Brain on Fire

I’m going to be sick. I’m running to the bathroom. I’m not going to make it.  I’m scanning for basins and thinking use the kitchen if I can’t make it to the bathroom.  At least make it to the tiles, it will be easier to clean up.  I make it, this time.  While I’m trying to keep my hair out of the toilet bowl and not notice how sore my knees are on the floor I start thinking; Where did this nausea come from?  The last three months have been relatively easy; is this what Chemo is really like?  Is this the nausea others talk about?  Well they can have it back; it’s awful.  And it’s not the worst thing.

I slowly make it back to the couch and lie down.  I’m wondering if this last month of induction treatment is worse because I have responded so well to Chemotherapy over the last few months, now there is less cancer to vamoose; more good cells are copping it.  I’m thinking about this when I notice my brain is getting hot.  Not my head, not like a headache; my brain. In fact, its not just hot, it’s getting hotter by the second.  My brain is on fire and I’m not sure I can cope.  My eyes feel heavy…and hot. I can’t keep them open but I feel sick and am going to have to get up any second to go to the bathroom again.  At this rate I’m going to need a couch near the bathroom or in it, not that it would fit.  My brain hell fire is getting worse and my body is screaming at me to close my eyes, sleep, now!

I can’t, I have to go back to the bathroom.  Ginger tea isn’t working this time. The anti-nausea pill isn’t working either.  This chemo experience is different, and besides, I can’t keep anything down.  So much for gaining weight or staying hydrated.  A bit hard to do when I’m vomiting.  I manage the journey to the bathroom, throw up and hang out for a while waiting for the next wave of nausea.  I have a picture of my brain burning bright yellow and red with solar flare flames coming off the top of it, searing their way out of my skull. My brain feels like it is about to explode.  It’s excruciating. Am I literally being fried with chemicals?  I make it back to the couch and succumb gratefully to sleep.

From 4pm to 2am I’m in the bathroom or asleep.  When I wake I feel trashed, tired but better.  I eat two rice cakes and marmite (love it or hate it, it has its moments) and manage to take my meds.  Relief.  I feel slightly normal again.  I watch TV for an hour and go upstairs to bed.

Sleep has been elusive over the last three to six months.  I often wake every 1-2 hours.  I am feeling a bit low and constantly tired despite the steroids.  Unsurprising really when I’m not sleeping well.  I talk to Dr L about pills and the nausea/brain fire.  He takes control and agrees sleeping pills are a good idea and proposes a second anti-nausea drug.  He doesn’t want me ‘putting up with’ anything.  Relief again.  I am finally going to get a good night’s sleep.  Florence pops into my mind.

Music; Dog Days are Over, Florence and the Machine

For the first three months/rounds of Chemo I’d had no anti-nausea help and found using simple ginger tea worked.  Now, I’m using two lots of anti nausea meds and ginger tea. The pfaffy thing; I need to remember to take the new meds 30-60 mins before food, three times a day.  More stuff to think about when there are already so many pills and supplements to keep a handle on and information about upcoming treatment to process.  Still, I’m highly motivated to prevent “brain on fire” and vomiting every five minutes – funny that.

The flag at Kings College Hospital is at half mast during my hospital visit, appropriately, for the victims of the horrendous attacks in London and Manchester.  I feel strange too; grateful for not being in one of my favourite areas of London, an old stomping ground, at the time the attacker was there and yet also wondering how I would have reacted if it was me the person with a knife had come after. Does knowing you are dying sooner than expected change how you might react in crisis? Would I have run or taken more risks? Thrown things at the attackers, tried to fight back or help those that had been stabbed? Who knows? I can’t know. I’m grateful in many ways for not knowing and yet I’m curious about whether I would be different now.

The rest of month four passes without too many glitches and the best thing is getting some sleep – hurrah! I’m a bit depressed about how much strength I’ve lost though, and how old I feel when I can’t undo a jar lid or carry something I’d usually be able to carry.   Weight training is now 20 reps of 1kg weights rather than three sets of 12 reps of a much higher weight. Fatigue is ever present.

This is not a novel new project anymore. The chemo, the eating regime, I’m over it. I want a break.

 

Editorial Support: Stephanie Kemp

© 2017 Janine Hayward www.psychingoutcancer.com.  All rights reserved.

July 19th, 2017 by

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Maria Q
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Maria Q

Janine, thank you for sharing your journey, even the tougher parts of it. Good luck with the rest of treatment. And I hope the tougher days become more manageable. Sending you lots of warm loving thoughts and wishes. Xx

Julia Labbett
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Julia Labbett

Keep strong Janine. It’s hard to imagine what you’re going through but I admire your courage. Don’t give up. Love you. X

Sue
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Sue

Sending you lots of love through all this stuff, and particularly through the tougher stuff! xxxx

Belinda
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Belinda

Bugger…so sorry to hear this round has been the toughest. Sounds like the talk you had with pain may need to happen with nausea and brain fire too…clearly they don’t know who they are messing with 👊✌️️
I hope rest is not so elusive in the days and weeks to come.
Love always BOO xo

Kerry Grierson
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Kerry Grierson

Janine your an inspiration, I admire your bravery, determination and strength and your total openness and honesty on your toughest journey, I’m in awe of you, you incredibly brave and beautiful human being, wishing you all the very best through your next stage. Xx