The first one
Through my healing work, I have achieved a level of body awareness I am extremely proud of. Knowing when my nervous system is sympathetic, ventral or dorsal has been a game changer when it comes to making decisions and for relational emotional regulation. Basically, I thought I had this treatment down. It was going to be my bitch and I had the mindset of going in there with ease and grace.
In. Out. A few laughs. Done.
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How wrong I was.
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The first sign that I should've taken a bit more seriously was my insistence of driving myself. I knew I was grasping onto a sense of control to counteract my deep down sense of powerlessness going into this treatment. I saw it, allowed it, communicated it to Jack and got on with driving myself there.
Of course, on reflection, I was in no fit state to drive. When we arrived I pushed past Jack to open the door and proceeded to close it behind me, or more accurately closed it on Jack. I was terrified of being late and focused on all I had to do with so little time…aka overwhelmed and definitely in a sympathetic (or fight or flight) state.
By the time I had walked the 7 steps (yes I counted them) from the entrance to the treatment chair I was in a fully fledged dorsal response, which is basically people pleaser on steroids. The only thing your nervous system cares about at this point is the needs of other people so ‘you’ will stay safe. Of course this is the most ridiculous logic ever, but who said our emotional brain was logical?
As I sat down, I instantly felt freezing despite it being 30 degrees outside. The nurse asked if I wanted the aircon turned off, which I really really did, but said “no thankyou I’ll be fine” instead. That’s the dorsal response for ya.
After hearing myself say that, I knew that I had crawled down the pit of powerlessness that is the dorsal response. “Damn it”, I thought, fighting the urge to berate myself for letting myself get here and not living up to the expectation of ‘ease and grace’ I had set for myself.
How have I become one of those people who can’t handle a doctor's appointment? I have done things a million times harder than this. All I have to do is sit there and still I can’t do it? What is wrong with me???
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Classic.
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The nurse (who is of course incredible in every single way) runs me through the side effects of Pembrolizumab, yet again…as if my life has not been consumed up until this point of researching and weighing seemingly every angle of treatment under the sun.
She starts listing all the common ones,
“Diarrhoea”- Yip
“Nausea”- Yip
“Itching, rash” -Nods
“Joint pain, back pain”- Cool.
She stops and looks at me, “It sounds like you have done your reading” I nod and she continues, “So, any organ can become inflamed, including your brain which can become life-threatening and lead to death” - I nod and even have a smile on my face.
What the fuck, this dorsal response has got me on the ropes.
“This can happen at any time during your treatment and even after your treatment has ended”- Gimli from the Lord of the Rings floats into my mind saying “Certainty of death. Small chance of success. Well…What are we waiting for? ….”Okay” I say instead of voicing the small movie that just played in my head.
“But also, some people have no side effects whatsoever”.
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Grrrrrrreaaaaaaaat.
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As she busies herself looking at my veins, my subconscious brain goes into overdrive. Trying to find safety in anything around me. Anything to let me know I am doing the right thing and I am not going to die from the side effects of this criminally expensive, non government funded drug.
My eye catches a painting on the wall of a house with a yellow mini parked outside. That house looks suspiciously like the one we lived in with mum. She used to drive a yellow mini just like that one. The radio drifts into my awareness and it's tuned into “the breeze” which basically plays all the songs from my mum's era.
“Rhiannon” by Fleetwood Mac is playing and my mind flashes back to singing along with her in a car ride to nelson. She is so happy, I am so happy, Laura is so happy. I had forgotten about that.
Is mum with me, reassuring me I am doing the right thing? Or is she trying to warn me? Or am I just reading way too much into this? I decide it’s all good signs, as one of my best friends is called Rhiannon and I would trust her with my life.
“You’re veins have run away from me”, the nurse commented as she rubbed my arm, coaxing them to come out. No shit sherlock. My veins heard you threaten them with death, no wonder they are not coming out to play.
Not being the biggest fan of needles, I turn my head away so I can’t see it go in. She wiggles it round a bit and I can tell it won’t take. The tightness in my throat threatens to choke me and all the fear, the sadness, the fustration of this entire situation flood out my eyes and drip off my chin into my lap and I bow my head. Sobbing.
I don’t even have the words to tell the nurse it wasn’t her fault, that I wasn’t crying from the pain of the needle…just the pain of everything else.
Finally understanding the pain of what my mum went through in all her cancer treatments. The fear she must have had leaving her two young girls as orphans, at least if it all goes pear shaped for me, my kids will have Jack. I cried for my younger self not having the tools, skills or knowledge to successfully navigate life after her diagnosis, or after she died. I cried for Emma and Hugo and what this situation must be doing to them at such a young and impressionable age. I cried for Jack, this wasn’t the powerhouse of a wife he signed up for. I cried for my businesses and how I had failed to show up fully for them and all of its people… and finally I cried for myself. As self indulgent as that sounds.
By this time, the treatment room had started to fill up. If you have yet to have the pleasure of being in a treatment facility, let me paint a picture. There are 5 big lazy boy chairs, that navy blue leather, all facing the centre of the room. Everyone can see everyone, but no-one is close enough to each other to have anything above a surface level conversation. Yet, you all know why you are here. The ultimate elephant in the room. I am seriously considering taking a big blow up Elephant and placing it in the middle next time…I digress.
So here I am, clearly the newbie who isn’t handling it, everyone watching but not watching. The seasoned pro’s who are reading the paper, continuing the conversations from last time about the weather or how to make the best strawberry jam. Their needles go in effortlessly, or they have a portacath, which reminded me of being plugged into the matrix. I don’t want one of those…or do I?
The tears help to bring me back to a more regulated state, where I can voice what I need. I need to get the fuck out of here is what I need to do. So I tell the nurses I need to go for a walk and they joke “you're coming back right?” I just laugh and play along because I honestly don’t know if I will. Do I trust myself to take the car keys? No, best leave them here I think and run the opposite way to the car. That’s what I do.
Good choice.
So I start to jog, then run, then sprint. Squat Jumps, Press-ups, Situps. Anything to get my blood pumping, my veins popping and the energy moving. What a sight I must have been on the side of Orchard Road. Suddenly, I am very aware of how ridiculous this looks.
Walking back, I tell myself all the reasons WHY I’m doing this.
For Emma, Hugo and Jack. For Laura and Simon. For my Mum and Dad. For Jordana, Shaz and Michelle. For Karry, Rhiannon and our company. For Jack’s Family, For my Family and everyone I haven’t met yet and everyone I've met along the way. I love the people.
Re-framing every negative thought. Amping myself up like I am just about to perform on stage, race a final. That fight state that I know so well kicking in good and strong.
I walk back in, feeling determined, though still a little scared. We start talking about the very real possibility of getting the matrix plug put in. I learn it requires another surgery to install. I bloody hate surgery ever since I had a really bad experience in hospital with my first ectopic pregnancy in Auckland (a story for another day) and was not keen on this port-a-cath situation if it meant surgery.
The first nurse gets the other nurse to have a go. She does and….nope. It won’t glide. The tooth floss string that was holding me together frayed apart. I say I need to go pee and as soon as I shut that door I start to shake so violently that I can’t even pull my leggings down to do the actual peeing. I can’t breathe, I can’t think, my heart hurts and I vaguely recognise this as a panic attack. Now, I have had so many of these in my time that I am an absolute pro at getting myself back off the ledge and walking out like nothing happened, which was exactly what I did.
Back in the chair I go, third time lucky right? Possibly, I am not as convincing as I think because the nurses offer me “Something just to calm me down a bit, encourage my veins to come out, kind of like a big gin”. I agree. I don’t want to be here all day and every failed attempt at putting a line is making it worse. Plus I agree to the cheese toasted sandwich with salt and pepper, and that my friends, is the best decision I have ever made. You can see the pure joy on my face. I have a big cup of tea and it is the bees knees. Finally, I’m ready.
The nurse joked with me that if she doesn’t get it this time, she’ll lose her job. I laughed because the drugs have kicked in. I’m now genuinely interested in how making strawberry jam is different from making raspberry jam and KAPOW, it’s in. Sweet success.
They hook me up to the Pembrolizumab. It is finally happening and as it is, I reflect on the 1031 people who donated to the give a little page set up by Michelle so I could have the financial means to receive it. I scroll through the names, page after page after page and am in absolute awe of the generosity of people, but not overly surprised. I have always always always believed in the goodness of people, even when it turned out to not be in my favour.
Thirty minutes goes fast when you are going through that many names, now to go home and see what happens.
The fatigue hit me first. Knocked the fuck out. Slept from 12.30pm - 3pm and then again 5.30pm - 8.30pm then all night. I am so grateful that Jack had the day off work to look after Emma and Hugo so I could rest. A literal game changer. I am pretty sure I took a few phone calls while I was half asleep, or so my calling history tells me. But the numbers are unknown callers, so if it was you, sorry!
Then the nausea and everything you can imagine that comes with nausea came. Basically, like being in your first trimester of pregnancy..without the excitement.
I decided to go to a cafe the next day to feel a bit normal and see if I could write some of this, but I started having really intense stomach cramps and I bled all through my leggings, all over my shoes and onto the floor. Not ideal in a cafe full of people.
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Joy.
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1 down, 16 to go.
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Learnings
Plan this year in 3 week blocks
Wear period undies as standard undies from now on
Even when you think you have mastered something, another level will appear to show you that you have not in fact mastered the thing and have more learning to do. Just like crash bandicoot.
I now fully understand why people get driven to appointments sometimes
Sometimes, it’s ok to take the blue pill
Bring headphones, warm fuzzy socks, a hot water bottle and put phone on flight mode next time