Bald Barren And Boobless

An honest and comical reflection of my journey through breast cancer

Tag: feeling unwell (page 1 of 2)

Ding Ding! Day 1 Round 3

day 1 r 3I am awake again from 2am but did not go back to sleep. Man I am tired, how can I not be exhausted. I haven’t slept well since mid November 2013 and I was exhausted before this all began.

Big day today, I will over the “hump” so to speak. Got my “Brave” t shirt on, acupuncture this morning to help with side effects. I shaved down for battle too as I had a light covering if hair that has tried to grow back only to fall out again soon after this next round.

At acupuncture, Amanda asked me about how I have been. I explained that I haven’t been resting out of guilt for not pulling my weight. She explained that guilt comes from a feeling of doing wrong, the only wrong I have been doing is not putting my health first. Ahhh, got it! A nice new way for me to approach things.   Certainly a more kind approach than my default.

Chemo goes ok today, my veins are not co-operating, they have sunk deep into my flesh, in an attempt to avoid the toxic assault. It does not work for long as they are coaxed out with a warm wrap.

My white cell count is too high so again less injections afterwards – Yay! As I sit there the toxic cloud descends, I am reminded of this familiar foe. As the headache begins and my stomach begins to protest and twist I decide to think of the fact that I am making progress, I have one more to go before the next stage, surgery. I am making it.

Only, 7 days to go of this pain and illness before the sun begins to shine again.   I can do it. Thank goodness for the journal which has really helped me map out how I respond to chemo. Such a blessing; please if you know anyone going through treatment like this encourage them to journal.

Tonight I sleep with the help of my new besties, “Endone and Valium.”  Bring on the rest, after being up for close to 20 hours, goodness knows I need it.

I’m Feeling ripped off

sad womanI had another restless night. The mouth ulcers are coming back with a vengeance. My head feels fuzzy, (not literally, as I am as bald as a badger). My tank is empty, Marc is still feeling strung out, he is so worried about being back at work and balancing everything. I am trying to keep out of his way, to give him space but it is really hard.

Today, I am leaning on the strength of my Lord. I have none of my own, so I need Him now more than ever.

I have spent much of the day in bed, it’s the Australia Day public holiday and we have not done anything. I must say I feel a bit ripped off in general these holidays. I feel so sore and sick that I am struggling to enjoy any of the usual things we do. I am not able to swim, I can’t think of anything worse than going to the beach; my body is deformed and swollen. The thought of hot sand getting onto already sore places is not a nice thought. It’s not a nice feeling at all, being restricted, but hey I need to be thankful for being here in the first place.

Logically, I know it’s only a season, but it is potentially a very long season. My impatience is showing and it is only early days yet :(. I said at the outset that I want to learn from this experience, to open myself up wholly, to learn and be changed for the better.

I am beginning to realise that impatience and control may just be some of the issues for me to work on. When your world is turned upside down and you realise in 3 seconds that you are breakable and finite in this worldly sense everything changes.

I mean everything……

What is important, what needs my attention, what needs to be let go of? I want to get as much from this as I possibly can so that I can stand at the end and say that it was worth it. You see I am going to go through this regardless, so in my mind I may as well make the most of it, gain what I can, learn, grow, be a better me.

So in my mind I am trying to rise above. In the flesh I am so sore, the skin on my hands and feet is peeling off in layers (it really does not look good), I am swollen and in pain. I decide to try above all else to at least get some sleep tonight, so it is 2 Endone for me and a prayer for some much needed sub consciousness.

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.

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 .

 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 2

chemotherapy picChemotherapy is so toxic. It attacks and kills not just cancer, but also all the living, healthy cells in the body and completely cripples the body’s immune system. – www.cureyourowncancer.org

So as the real chemotherapy enters my body I actually do get a headache and begin to feel nauseous. Now I am second-guessing myself, is it real or am I Imagining it? I ensure that we ask every question we have and take notes. Marc has to do this as I am still wearing the ice gloves.

I feel a little more relaxed, there is some tingling in the hands and feet, we advise the Nurse as this is a bad sign and they slow down the delivery of the drugs. I look around the room to notice that cancer is completely indiscriminate. There are young and old here, men and women. All at various stages, some with hair, some without. Some look otherwise normal, some look really sick.

Marc and I have strangely enough had fun today, we have laughed, talked, joked about. It’s been rather lovely really. Apart from the fact I have a raging headache, feel like I want to vomit and have a weird buzzing pain all over my body, I have had a lovely day.

We have spoken bout he possibility of the new edition to the family in the form of a pup. Marc states that he really didn’t intend to suggest we bought a puppy. I ask him honestly how he feels and he is quite excited. He just won’t show it.

I suggest we just go and look at her and ask some questions. For example how do we ensure that the pup and our older dog get along? We cannot upset our older dog, he has been with us for 14 years.

So we agree that we will pop in and have a look at the pet store. After all we need to head the get some drugs from the chemist, I need a combination of uppers and downers, inners and outers, drugs to make you go potty and drugs to stop you, what a mess.

My tummy is percolating as we leave at 5pm and head to the shops. My body is buzzing and everything feels really surreal. I am in for a ride I reckon.  I determined to remain calm amidst the storm.

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