I begin to feel human again – small steps

small stepsI slept well again! Woo hoo for Endone! I woke at 7am, it’s almost a miracle. The tiredness is still overwhelming; it is truly hard to explain.

I have a fuzzy head and it’s like I am trying to think but my head is full of custard (weird analogy but the best I can do). I still have indigestion that would mame most horses and my tongue is numb.   It is the weirdest thing.

Also my taste buds have changed, I can no longer taste anything but this persistent metallic taste – it is not pleasant. Everything tastes like this persistent unpleasant metal taste, even chocolate…… It’s heart breaking stuff.  The only thing that tastes normal is liquorice, weird hey? Lucky I like liquorice.

I went on an outing on my own today to the shops! Now that’s progress. I think I need to have small daily projects, like “go to the shops ,” “get dressed,” “shower.”  Small steps baby.

Honestly, if my to do list grows much more than that I am setting myself up for failure. I do believe a big part of this journey for me is redefining that I am not what I do. I am who I am and I am enough. I do not need to prove myself through my works.  I have been trying to prove myself through my works for many years and believe me it is exhausting.

I did 40 minutes on the Pilates reformer today so that was a huge achievement. Look, it is slow and it is gentle but its movement, Yay!

Being such an over achiever for such a long time this experience has real smacked me between the eyes. I cannot push through or past this, it has me at its mercy and I must obey. So I will listen to the wisdom of my body, I will accept myself for where I am at, I will appreciate the smallest things.

For example just sitting in the front yard watching Bettty Boo chase insects and butterflies. It is such a simple thing to do but I would never have taken the time to do that before. Daily small miracles is what it is all about.

NEWS FLASH!!

newsflashHi all,  after some recent feedback I thought it was critical to provide some clarity around this blog for you all.

I am writing this blog retrospectively, I am currently just under 12 months from when it all began mid November 2013.   The reason I am clarifying this for you all is that so many people have said to either myself or my Husabnd, “Gosh has Kylie started Chemo again?”

The answer is “No”, my chemo ended some 6 months ago however I am certainly still coping with the aftereffects of this horribly toxic stuff.  Things such as, lethargy, gastro issues, bone and joint pain, taste issues (taste buds still weird).  So apart from today, whenever you read a post it has been written retrospectively.  I needed to do this as the idea of writing as blog was not one that came about when I was diagnosed.

In fact, I was blessed with the fact that I had kept a journal.  This is the longest I have ever consecutively kept a journal and if there is anything I can encourage is for anyone going through a journey that has so much to offer – keep a journal!!

It is such a gift when you can look back and reflect on your journey with such detail.  Particularly, if your memory is compromised for whatever reason like mine has been.  Self reflection is such a powerful exercise to take part in.  If all we really are in control of lis ourselves and our thoughts  —-> actions then self reflection is a necessary part of our evolutionary joinery into better people.

I have always been so driven to take whatever learning has been thrust upon me.  I kinda think, if I have to go through something hard and crappy I may as well find some good in it.  Although it is weird to say this, much good has come from this experience.

I am learning that I am a “human being” not a “human doing.”  My output does not define me, I am strong in many ways, I can see the good in a very bad scenario, I have amazing friends and family that have stood with me, my family is phenomenal, my kids are resilient and have such big hearts, I know who I am in God so much more now.   I also know that I am never alone, He is always with me.

I also have a very large fire burning in my belly to change a few things in this world so that less women and families have to endure want we have over the past 12 months.  There will be positive change, I am determined.

So for all of you lovely and loyal supporters and readers out there, I am not currently going through chemo, I am doing well I am recovering from my last surgery which was about 5 weeks ago and things re going ok.  It is a long journey, it is a hard and unpredictable journey but I am very confident that I will continue to do well.  At the very least – I am learning a heck of a lot!!!

Thanks for all of your support and prayers, it is such a gift I cannot tell you how much it means.

 

 

 

I learn the unpredictable nature of this journey

dog tiredI slept better, thank goodness for Endone, it helps so much with the bone pain. So it still school holidays here and I have nowhere to be. I decide to take a bath, thinking that it will relax me.

In the bath I am thinking, this is one of my thinking spaces. I am compiling a “To Do” list as I do. After soaking for a good 20 mins in a lovely Epsom salts bath (a very nice way to detox people) I get out and dressed.

I am then devoured by the most indescribable tiredness, I cannot explain to you the depth that this tiredness seeped into my body. I literally went straight back to bed. I was so exhausted that thinking was hard. So I lay down and just be.

The pain in general and the general feeling of illness and toxicity is subsiding. My digestive tract is still inflamed and angry but better. The indigestion is still ridiculous, but at least I know I’m not dying of a heart attack. That alone eases the anxiety.

I played on my Pilates reformer today, only 10 minutes but it was movement and it felt good. I intend to do this more frequently so that my body remains mobile.

I slept on and off all day, and then we got Thai take away for dinner. Some of it had the smallest amount of chilli on it and I feel red raw from my mouth all the way down.

So a little more progress today, I do feel a little better and we will see what tomorrow brings. A very wise woman said to me not to fight the lethargy, to allow my body to rest and to heal. This is not in my nature, I am a fighter, I have always fought to do more than I should to be more, to accomplish more. This war on my body is too much. I need to listen to my body and be kind. Allow my body to rest and heal. Then and only then I believe I will win the battle .

How Long is this Bloody Valley??

sunrise out of darknessI woke at 530 am with a growing pain between my shoulder blades. Initially it felt like something literally stuck in my chest, the pain grew to be unbearable.

The pain just keeps growing, to the point where I don’t know what to do, I move, I take slow deep breaths, I walk, nothing eases it.   I lay there rolling about in pain, moaning, that too does not help.  I really don’t know what to do with myself.

After an hour of feeling like I was having a heart attack I get up and take some antacid, only out of complete desperation. After a second dose the pain began to shift. OMG, that was awful!!

Now I am almost afraid to move, so I make a note that on Day 6 post chemo this may happen. This is exactly why I decided to keep a journal. Apart from the feeling of “I am dying” on waking with his horrendous pain in my chest; I feel generally a little better today.

I still have toxic acidic burning diarrhea, a fuzzy head, I am in slo mo and my entire  body is sore ( like I’ve been hit by a bus).  Apart from that I feel better.

I saw my GP and had Acupuncture today. My GP at Sydney Integrative (Formerly U-Clinic) is wonderful. She listens, she helps, she is always willing to take the time. I am so grateful for her support.

I also had acupuncture today, it helps, it eases my symptoms, gives me relief from the pain and heat coming from my body. If you know of any one going through chemo and they are struggling please let them know that acupuncture may be of assistance. Gosh at the very least it is worth a try.

I am having weekly treatment with acupuncture particularly through the full on assault of chemo. I go home and rest. There is literally not much else my body will allow me to do. So rest I will.

I am believing that this is the beginning of the sun beginning to shine through the darkness of the valley I have been in. This is but a season and it too shall pass.

 

 

 The Valley continues

Valley 2 I did not sleep well at all, too much pain and heat for me to get much sleep. I was awake every hour or so, which adds to the exhaustion. Also, the nights are just so long and lonely.

Marc has always said for me to wake him, but one of us needs to be functioning, so I cant wake him all the time. Besides I am the daughter of a night shift worker – YOU DON’T WAKE UP A SLEEPING PERSON! I was trained well; sleep is far too precious.

I almost cry with gratitude when daylight comes. We spend a quiet day doing some light errands until early afternoon. I am so slow and sore. As we drive past people I see them smile and I think, “How can they?” “What is there to smile about?”

I  am so caught up in my own little toxic dark world. Even blinking seems too hard. My head and body feel thick, fuzzy and hot.   I have bone pain in my back, hips, legs and feet.

I had to give myself the injection again today. I didn’t count to three for quite as long as yesterday but I still took a while. It’s all the head games I play with myself.

So it’s back to bed for me. I hate the thought of it but if I had a tank it would be soooo empty right now.

I need to remember that this is temporary; this too shall pass. I am not stuck here, it is only for a short time and when I get through I will find myself, my energy and my smile again.

Day 3 post chemo – I have entered the valley of the shadow

valley of the shadow So as I have said, I feel like I have entered the valley of the shadow of death.   Don’t worry folks, I don’t plan on staying here. I have not slept at all well through the night. I am in so much pain I just cant get comfortable. My whole body hurts.

I’ve only felt something similar when I was involved in a head on collision many years ago and every part of my body felt bruised and battered. This is similar but with a toxicity like a 24 hour bug from hell.

The bone pain in my legs back and hips is unexplainable. My head is hot and fuzzy, my body is stiff and my entire digestive tract feels bloated and inflamed. Like my system is screaming at me “WHAT HAVE YOU DONE!!!”

I was in the kitchen trying to find something to eat as I feel weak but am scared to upset my system any more. Samuel my quirky gorgeous 12 year old son enters the kitchen and says “Ohh mum your hair has started to fall out!” In my own mind scream, “Not know I am so not ready.” The look on my face must have been priceless, as he soon tells me he is only joking. Oh kool, hah hah love, that’s so funny!!! NOT!

So now I feel paranoid as well as like I have been struck by the toxic avenger. It reaches 11am and I am required to give myself an injection. The injection is to protect my body from dropping too low in the blood count. The nurses showed me how to do it on the first chemo day. They give you the option to come in for 5 days and have it or you can do it yourself.

Guess what I chose? Yeah, don’t want to be a burden, I am far too practical as well, so how hard can it be? The actual injection itself is not hard, you stick yourself in the tummy and you push the syringe then you take it out, Simple!

I know what it feels like, sometimes when you get just the right angle you hardly feel it, its great. Other times you get the wrong angle, and it can really sting and burn. So here I sit counting “1, 2,   3”…nope. Again, “1, 2, 3”…nope. Again, “1, 2, 3”…nope. Now I am getting frustrated with myself, “Kylie JUST DO IT!!!!”

So I do. Funny, it’s nowhere near as bad as I think, a little sting but ok. Man it is such a battle of the mind! I feel slightly proud of my delayed bravery.

The day progresses and I just get worse; the toxic avenger has turned into a freight train that has run me over. Everything hurts; even blinking is hard. I fall into bed and stay there. All of the pain is horrendous, my head and body is hot and buzzing with toxicity. I pray for sleep, please come and swallow me into your peaceful embrace.

 

Day 2 post chemo – toxic city

toxin symbolIt may seem tedious but I am committed to keeping a daily journal through treatment as it helps me to manage symptoms, cycles and to plan ahead. If you or someone you know is going through a similar thing it can really help to identify patterns, discuss symptoms with their health team and help them to cope through forward planning. For example if you learn that days 2-8 are your worst then plan to look after yourself and rest as much as you can during those days.

I was told to expect days 2-7 to be the worst when it would slowly pick up until I felt good and was due for the next treatment. I’m also keen to count at this stage so I know when to expect that my hair may fall out.

I’m such a planner I want to know roughly when so that I am not like in public and suddenly my hair falls around my feet. You would not know the crap that goes on in my head. Imagine your hair just falling from your head all at once. I have – vividly!

So day 2, I woke through the night at 1230am, 130am, 330am, thinking I needed the loo due to my threatening bowel, each time was a complete false alarm. I’m up for the 8am church service. I feel like crap literally, but I need to go and seek the presence and peace of my God.

My head is fuzzy and achy. My tummy is percolating and I am not sure if I can eat, but I know I need too. I feel weak and shaky. I have tingling in my fingers and toes and my hands and feet are really hot. I also have this weird ache in each of my teeth like they may fall out, not nice at all.

I feel like have had the stuffing knocked out of me. I took Maxillon to help with the nausea and took it easy after church. It is Marc’s Fathers Birthday today so we go and see him for a birthday lunch. I didn’t cope too well but it was really important that we spend time with him.

Once I get home I hit the wall and go back to bed. I toss and turn as I am not able to get comfortable. I have really strong back and hip pain. It feels like it is right inside the bones. My tummy remains really upset and bloated.

I have been well prepped by the Hospital staff as to how to protect the family from me. For example, when I use the toilet I am to flush at least twice and wipe down the seat. I am not to share cutlery, crockery or toothbrushes. If Marc and I were to be intimate, we need to use condoms to protect him from how toxic I am.  Now that is scary stuff.

It just blows me away that I have subjected my body to such toxic stuff, but to be honest I don’t feel like I have a choice. If it were just me then I may feel more like playing roulette – You know see if totally natural and complimentary work, or just have surgery and go it alone BUT  I need to ensure I am around for my beautiful son Sam, as a birth parent I am all he has.

Day 1 Post Chemo

Good-health-poor-healthSo surprise, surprise I didn’t sleep too well. In fact, I was woken every few hours by the need to use the bathroom due to violent and acidic diarrhoea. Sorry folks but when you signed up for this I promised the truth.

The clock ticked past 245am then 4am. I took some more pain meds for the back and leg cramps. It is so hard to try and get comfortable in bed. I watch some TV in bed, which passes the time but is not ideal.  Midnight to Dawn TV is awful…….. Just saying.

Morning finally comes and sadly today we go to the funeral of a close friends Mum. It occurred to me for a Nano second to decline due to my fuzzy head, nausea and exploding acidic bowel but I could not say No. These friends have been so kind, so generous to our whole family the least we can do is go and stand with them, celebrating the wonderful life of their precious Mum.

We arrive and my mission is to case out the loos in case of a bowel emergency. There are no major issues, thank goodness.  However, the entire time I feel surreal like I am hovering outside of myself, I am now not sure if it’s all in my head or not.  Regardless, the service was beautiful, this woman was treasured by so many.

We pay our respects and head home where I go straight back to bed. I take more pain meds as the cramping in my back and legs has not subsided. I decide to go for a walk and Marc comes with me. Poor love he must feel like he is in a slow motion movie. Believe me I am not fast at the moment. I make snails look like formula one racing cars.

I feel like I have a horrid hangover that has morphed into a stomach bug on steroids.   Despite this I made some soup and amaze balls for myself. Clean eating is the way to go.  I keep saying to myself that i need to put in as many nutrients as I can.  I hope I can keep going as I traditionally do do too well on healthy for when I am experiencing nausea.  When I and morning sickness in my pregnancy I was well known by Pizza Hut ( Meat lovers Pizza), Maccas (their shakes) and Michels Patisserie (ohhh sausage rolls) just to name a few.  I was sure that I would give birth to a cabanossi I ate so much meat lovers pizza.

Getting back to the Clean Eating, if you’d like the recipe for amaze balls let me know and I will share it on the resource page. They are wheat, sugar and dairy free and pretty AMAZING. I learned the recipe form Sara Wilson who is a wonderful ambassador for clean eating and a healthy lifestyle.

Betty boo is still real cute, real sweet but a more excitable more boisterous version of her is emerging. She has such a spirit, I am loving it. I am going to ensure we train her well though J

Well I am back off to bed and I am praying for respite tonight.

Yay! It’s Chemotherapy day!!! Part 4

betty booDid you know that some people have actually died from Chemotherapy? It is powerfully toxic stuff. So much so that the medical professionals dolling out your treatment are covered from head to toe in gear that look like a scene from a sci-fi movie.

So with this toxic stuff in my system I am feeling pretty weird. As I approach the glass enclosure of the pet store, I see that ‘my’ puppy is not there my heart sinks. I feel my self say, “it’s not meant to be……..”

Then, I see a tiny paw sticking out from below the bed pillow in the enclosure. My hearts lifts as I gently tap the glass and out pops this little beauty!   I am over the moon. We request to have a hold and begin to spray questions at the staff about how can we introduce this pup without upsetting our dear old man Benjamin.

Meanwhile this pup has crawled up my neck into the space between my jaw and collarbone and snuggled right in. Ok so who trained her?? As if I am putting her back in that enclosure, she is mine!!!!

The staff assure us that if we take our time and ensure that Benjamin is treated as the dominant dog, we speak to him, feed him, pat him first etc things should be ok. He needs to feel like this is a positive thing for him. So we buy all the gear we need, fill in the paperwork, it’s like adopting a child almost ;) (I say this tongue in cheek, I have the utmost respect for anyone who adopts a child whether its here or overseas.)

So we take all of the gear and our new edition “Betty Boo” home. We have said nothing to the family about the pup. All they know is the picture you see above with the tag from Marc saying, “who will love me?”

As we drive in the gate, Samuel comes out gingerly, I think he thought I was going to come home glowing radioactive green or that I would be bald when I came home. He is pleasantly surprised when I look the same. I motion him to me in the car, particularly my lap. When he looks in and sees this tiny precious black pup curled up the love affair begins.

Welcome home Betty Boo, what a highlight to my first chemo day! I will always remember this for the gift of getting you instead of the day I began to poison any remaining cancer in my body.

So we settle Betty in, introduce her to Ben, we take it very slow, Ben is not impressed. I go to bed as my entire body is buzzing, my stomach feels like it is distended and on fire. My legs are aching and so is my head. I take some pain meds and decide to go and lie down. I wonder what tomorrow will bring?

 

Yay! It’s Chemotherapy day!!! Part 3

broken heart3Did you know that the side effects from Chemotherapy can be worse than the actual disease it is treating? I know for me I am feeling at this present moment like I have been hit by a small truck, not yet a semi trailer but a small perhaps 3 tonne version.

We leave the Hospital and head for Westfield, which in hindsight, is not a great idea.  I have an invoice to take to Medicare to try and get some cash back. We have spent well over $50k so far on treatment and surgery so we need to keep on top of what we can recoup. With no insurance kicking in yet it is financially trying.

Just stop and think what would happen to you if tomorrow you were told you could work again and for an undefined time? Would you be prepared? This will be covered in depth in a future post but please take the time to consider this for your self.

I asked this of a lady recently how would she cope if she became sick and was not insured. She looked me in the eye and said “Oh but I don’t plan to get sick.” My response straight back at her was, “Neither did I!” Sadly I still don’t think she got it.

I get to Medicare which most of you know, is a very pleasant experience. I get my ticket find a seat and wait, and wait and wait. Finally, a young woman who appears to be perhaps 24 years old calls me up. She holds her hand out and drones at me, “How can I help,” however the tone was anything but helpful. I try to muster a smile whilst my stomach is fighting the toxin recently overtaking my system, my head is buzzing, my body buzzing too and a weird hot pain is raging all over.

I say “I have this invoice to claim on please.”  I hand her the invoice and she looks at it, scoffs and spits at me “This is not the right invoice I cannot help you” and then waves to the next person.  I am outraged, but the inner assault on my body prevents me from doing anything but skulk away.

Now, anyone who knows me knows this is not how I normally handle a situation like this. I would usually quite assertively stand up and say “Sorry but that is not helpful, please explain what the issue is here.”  I would then remain until it was resolved to my satisfaction as a tax paying Australian.  I walk slowly to find Marc with hot tears of anger and frustration welling up inside me, how dare she be so rude!

I find Marc and try to explain, he hugs me and says calmly, “We will sort it out love.”  He has all of my goodies from the chemist and then says, “So are we off to the Pet store?” I agree and say “If we get there and she is not in the window we will take that as a sign that she is not meant to be ours.”

We approach the pet store window where “our” little pup is meant to be, we look and all we can see is an empty glass enclosure. My heart tears open as it sinks in my chest…..