Bald Barren And Boobless

An honest and comical reflection of my journey through breast cancer

Tag: feeling tired (page 1 of 2)

No rest for the wicked, I mean hairless

photoOh my goodness I actually got a little sleep last night. I’m in shock this has not happened to so much time. I am at day 12 of my Chemo cycle now and am beginning to feel human again. As many wise women have told me I need to be careful of being romanced by the idea of my energy returning.

Many amazing women who have walked this road before me have shared with me that I need to prioritise my rest. As many of you may imagine, this is one of my biggest challenges. I am not used to pacing myself, pulling myself first, being kind to myself, being patient with myself. This is like a new language I am yet to learn.

As I have shared previously, I do believe this experience has come to teach. This is how I choose to look at my circumstances and take the gifts from it. One such gift I believe will be for me to learn how to be kind to myself. For me to learn how to give back to myself and how to fill my own tank.

I believe God has been trying to teach me this for many years, however I am as stubborn as a mule. I think it has taken the road of cancer and a complete and utter destruction that comes with chemo to bring me to my knees. And on my knees I am.

Despite this enlightenment I again had a busy day ahead with no planned rest. So whilst I am waking up to the idea of the lesson I am being given I am still yet to put into practice. As one of my business mentors would say, “if you know and don’t do then you don’t know.”

An exciting thing that’s happening today is a new piece of furniture is being delivered. We bought what is called a snuggle chair this beautiful chair that is round, comfy and fits 2 people. Romantically, I think Marc and I had visions of us sharing this chair while we chatted, read the books and just spend time together.  See the picture above, this is the chair in our lounge room.

The current unfortunate truth, is that each time I am near him I have so many hot flashes that I cannot really be near him. What a sad story this is.

Again my to-do list is longer than my energy levels. After church this evening we head home and I am completely whacked. I really need sleep. I also really need to get this lesson and start resting regardless of how I feel. I need to be proactive not reactive. One day it will sink in.  Thank goodness my God is so gracious and patient with me.

Flatter than a Flat thing

exhausted 1I slept ok, better than expected without medication. I wake feeling tired but ok. Tiredness is a permanent state of being for me at this time, Lethargy s like a friend staying on my couch uninvited and I can’t get the to leave.

Marc is out doing some errand and I begin to do some chores. It is not long before I realise I need to return to bed and sleep. The pain in my hip is unbelievable. I eventually fall off to sleep and wake at 3pm, I feel so hot it is like I am on fire.

I have my own personal light bulb moment and realise we have a pool! Eureka!!!! I go for a swim and oh my gosh it is so nice…… I float around I my own cool bliss.

I am not sure what it is but because I am so flat I am craving carbs something ridiculous. All I eat is chips, chocolate and liquorice. The only thing that tastes semi normal is liquorice. It is the only thing that can cut through the permanent metallic taste in my mouth.

Because I have eaten such crap all day I feel really bad by late afternoon. A combination of bad food and guilt has me crippled. I need to just crawl like a bad dog into bed and hide away.

I want to leave today, start fresh tomorrow; I hope my body will allow me to. Part of this is me learning to allow myself to have a bad day, a slow day even a nothing day. I am so achievement oriented and this journey is sometimes full of me achieving nothing except having a day like today eating crap and then feeling sick.

What’s that saying, “some days are diamonds, some days are stones…..”

How dare they!

vulnerability-signsmaller-1024x682I woke early today, feeling pretty good actually. I did another 40 mins on my Pilates reformer, you know it feels great to move my body again. Marc and I then headed out to Cronulla to have breakfast with some friends in Cronulla.

On the way to Cronulla I get a message from my previous  GP saying he has received a requested to provide information and he is confused as to the context. I call him and he says my insurer has contacted him asking about my mental health. Bloody insurer, they are trying to discredit me already!! I make an appointment to see my GP that day.

I feel so insulted that they are trying to catch me in a lie.  I pride myself on being honest so this really hits me hard.  I know this is just a process but this has become very personal for me.

I then place a call to my Financial planner and leave a message. I am furious! What has my mental health history got to do with a breast cancer diagnosis? You see my background in the rehabilitation industry has seen on many occasions, good people having claims not honoured through a loop hole, I won’t let them do this to me!

Breakfast is lovely, right on the beach.  but I am dreadfully distracted buy the furore in my head.   I enjoy my food thinking tomorrow I will be as sick as a dog again so make the most of it. After breakfast I get a call back from my financial planner. He explains that the insurer is confused because in the past I have been quoted as having anxiety, stress and been prescribed valium. I explained that this was all to do with the IBS (Irritable Bowel Syndrome), which is clearly stated in the insurance paperwork.

My poor Financial planner, he can hear how angry and insulted I am, he explains it is part of the process and they want to ensure I have not left out any important info in relation to my health. If I have then they will not honour the claim. I also find out they contacted a psychologist I saw years ago to have some counselling. Really private stuff and they just get to go through it.  I feel really exposed and traumatised. “How dare they!” I scream to myself.

Now I am feeling vulnerable and out of control. If I don’t get any financial support during my illness it will drastically change the course of my recovery. I may need to make financially driven decisions about do I or do I not have complimentary medicine? It is really expensive.

I realise how blessed I am to even have insurance as many do this the hard ay with none.  I take my hat off to anyone who has done this without insurance or without the financial backing to have what treatment you want to have.  Truly, I can’t imagine how hard it must be to go through this and to be in financial hardship.  To the point, Marc and I have survived by refinancing our mortgage.

My mind is going at 1000 miles per hour.   On the way home we pick up a friend of our son’s bring him home for a catch up, we make lunch, have some visitors, go shopping, make dinner, clean up, cover bloody school books and I fall into bed.

I know I am doing it early but I also know I am going to be out of action for the next week potentially after the next round of chemo. I am absolutely dreading the thought of tomorrow…….

I came out today!

Kylies Peronal JourneyBefore you freak out, read on ladies and gentlemen.

I woke feeling better today, so good that I did 40 minutes of Pilates. Marc and I went out and did some errands. By lunch I had began to feel the familiar creeping of achiness, pains and general crapiness return. My hips just ache. In my head I wonder about my Mum’s bone cancer that was all through her hips. Yuck…  She had so many aches and pains too….. Don’t go down that road!  not helpful at all.

I had to start the dexamphetamine again today in preparation for chemo in 2 days. They say it can give you a buzz – I pray for that! I am so tired and sore that a chemically induced buzz sounds awesome to me.

So, as I said in the beginning – I came out today. I decided to venture out into the big bad world Bald. It was mostly empowering, I did get a few strange looks. You see, because I look quite well, people say my skin is glowing. You can’t tell my right boob is missing (especially with a carefully placed scarf or if i wear the prosthesis) so I am sure people wonder if it is a lifestyle choice to be bald.

It is quite confronting when you feel that judgment happening though. Anyone who has ever felt judged in any way will know what I mean. I felt the same way when I first separated and divorced. Particularly, amongst some extreme religious people who I felt looked down at me like a quitter or a failure.

However, I know that only God judges me. I also know He has forgiven me, I know He loves me, He is with me and that He will never leave me, so that gives me so much comfort and strength.

I am learning that I am more than my looks.  Now this is a biggie for any female.  The world teaches us that we are our looks.   It’s funny I would be able to say to anyone else, “lovely you are not your looks, you are so much more,” buy my own self-talk is not the same. The battlefield of the mind hey? I heard a very wise man say recently “the hardest person we will ever deal with is ourselves.” How profound.

Funny story – I was out and about with my prosthesis in as you do. I did not feel brave enough to be ‘bald’ and ‘boobless’ in public just yet. I was looking in the mirror in the ladies when I noticed that my prosthesis had migrated north. It’s like it wants to be promoted to a shoulder pad! You have to laugh….                              well I do anyways…..

Marc and I took the kids to Youth at church tonight and after a good rest we went out for dinner. On the way home we stopped in at the best gelato in Sydney “Messina.”

It tasted wonderful at the time but I am as sick as a dog afterwards L One more day of normality until the next treatment….

Laughter is such great medicine

laugh or cryI felt better today when I woke up, thank goodness the Truck had not run me over again! I am excited as I am meeting one of my best girlfriends for lunch and a movie today. We saw an action movie, I fell asleep half way through, sad but hey under the circumstances I suppose it is understandable.I felt better today when I woke up, thank goodness the Truck had not run me over again! I am excited as I am meeting one of my best girlfriends for lunch and a movie today. We saw an action movie, I fell asleep half way through, sad but hey under the circumstances I suppose it is understandable.

We had such a great day laughing reminiscing and sharing. We have always had a relationship where we thrive on each other’s energy and ideas. She has the ideas, I follow through, it is a great balance.

Friends are just so important. I know before I was diagnosed with cancer and I was seeing a counsellor for some stress management support. She asked me what I did to have fun and I couldn’t answer her. My world had shrunk to work, managing family stuff and more work. I was struggling with a unhappy relationship with a loved one and I was really stressed.

My cup was empty and I just kept expecting myself to produce more. I am sure I was on empty for many years. This journey has been teaching me how important laughter, friendship and prioritising me is. All work and no fun made Kylie a very sick woman.

So if you are struggling with something, whether it is health or stress of some kind, take an honest look at your life, at what makes you feel good. Promise that you will do more. Fill your cup so you can be there and be fully present for others. Letting yourself become run down comes from a dysfunctional place of self importance, (everyone needs me.) In fact, what you are doing is the exact opposite. You are being really selfish because no one gets the best you.

What a Big Lesson for me!!

I came home and had a lovely dinner with my boys and we watched a silly movie. We laughed and laughed. I noticed my head and scalp feel really tingly and sore. I wonder if tomorrow will be ‘D’ Day or ‘B’ day. Only time will tell.

Sam has not been well since he came back from Summer camp. He has a fever and a headache. I asked him to come in through the night if he needs me.  I hope he isn’t coming down with something.  No matter how sick you are a Mum never switches off.  Makes me really miss my lovely Mum 🙁


Seeing the Oncologist today

road w quoteWoke feeling pretty good today. I have an Oncology visit again today. I still can’t wrap my head around that. “I have an oncologist.” This is a medical doctor I never thought I would have.

She is helpful, she listens, she writes me scripts to help with pain, digestive issues and sleep problems. Man I am taking so much medication. My Blood tests results were good, my liver is struggling but my white cell count was in the normal range! Yeah!

I also had acupuncture today; my positive blood results tell us both that the treatment is supporting my body well. I really feel like I am doing what is right for my body and me.

Came home had a rest and then out to dinner with some friends, rather a lovely day really. I am certainly feeling much less sick than before which is great. Although they say just as you begin to feel well again you head in for the next round.

I must say I am feeling uneasy about the whole “waiting for my hair to fall out” Scenario. Talk about mess with your head.   It is due any day now. I have a cap in my bag at all times; I am making all sorts of jokes like “don’t be in a strong wind.”

It is really bizarre and I am afraid to touch my hair, just waiting for it to fall out in my hands.  It is unlike anything I have experienced before.  Man I hope I have a nice scone.


Waiting and watching for the inevitable.

persist quoteI can’t believe it I slept like a log. When I finally woke I felt like I had a hangover.- believe me it was a slow start to the day. I am a little sore, probably after the Pilates. But hey, it a positive sore. YAY! I cannot tell you how nice it is to have a good sore for once.

For months now each time something is sore there has been some type of catastrophe or trauma associated with it, today it’s because I exercised – woohoo! I have developed mouth ulcers, hang on let’s say GI tract ulcers. I am pretty sure they go most of the way down. Each time I eat I can feel them burning and sore. They are all trough my nose also, any mucous membrane. I have been a little slack with the mouth wash.

One of the many tips they give you is to wash many times each day with a bicarb mouth wash to avoid or help with mouth ulcers. I keep forgetting and am also so dang tired that I lay in bed and think, “should do mouth wash, nahh couldn’t be stuffed.” So this would be me paying the price for that now.

I am now day 9 since chemo began and they say anywhere from Day 13-21 your hair will begin to fall out. I am psyching myself up for it. It is a weird thing to be waiting for. I’ve read some weird experiences. Some people wake up and their hair is on the pillow. One poor lady woke to find her eyebrows staring back at her from the pillow. Now that would be difficult to describe.

As a normal woman we spend most of our adult life trying to rid ourselves of excess or any hair in the so-called unacceptable places. Now I am waiting and watching to lose it all. I mean literally all. You lose, head hair, eyebrows eyelashes, leg hair pubic hair EVERYTHING! Talk about head spin.

That step makes it really real; I can no longer hide. Yes I don’t look or feel well now but no one knows unless I tell them. When your bald everyone knows it’s the BIG C.

As I am day 9 now I have 12 days until the next round. So I will begin to feel “almost normal” with the exception of the tiredness and some of the longer lasting symptoms before I go back and say “Sing it again Sam.”

I am having ovulation pain today that means my ovaries have not stopped functioning with the first dose of chemo, they will with the next round for sure. I look forward to the day when my energy is back, look out world.

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 .

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.


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?


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