Bald Barren And Boobless

An honest and comical reflection of my journey through breast cancer

Tag: cancer treatment (page 2 of 4)

Running on empty

dog tiredI woke at 1am and was wide awake until 3am. It was a combination of being too hot (internally, hot flushes) and being in too much pain. I got up and walked around for a little while.

These wee hours of the morning can be such bliss and peace or the exact opposite so horribly quiet and lonely.  The time passes so bloody slowly and every bad feeling or emotion seems magnified.  I am always so glad when the sun rises fem these nights.

Today we had vision Sunday at church. This day is always so inspirational, it lies out the vision over our church for the next 12 months. The vision spoken over this year is a year of new beginnings. This could not be more true for me and my family.

So many things will be new this year, Sam is growing as a young man, Moni is doing the HSC. Me, well I am just trying to find my new normal. Marc is balancing so many things and being the rock for us all.  This year will hold many mysteries, many challenges, many opportunities and much growth.

Physically I am in less pain today but I am still dog tired. It is really hard to put into words the gravity of this tiredness. I still don’t really even understand it myself I just know I have no control over it.

Despite being so tired today was a big day. There was little rest, and many errands to be done. Anyone else reading this who has a family knows exactly what I mean. Today simple things like the ironing, the shopping, the washing, general organisational stuff all that needed to be done.

I know some of you reading this may be saying, “Why doesn’t someone else do it?” The simple answer to that is, “Who?” Yes, we have had so much support, it’s almost overwhelming. However, these people have lives to lead too. Additionally, one thing I’ve always struggled with is asking for help.

So this day may take its toll tomorrow only tomorrow will tell. I’m so desperately tired but I can’t sleep. At midnight I decide to take sleeping tablets I just need to sleep.

Gotta get my insomnia sorted out

I Kylie's Personal Journey Documentary_Stage 1.woke at 1:11 AM feeling like I’d had hours of sleep. AAARRRGHHHH!!!

I’m wide awake, I’m having intense hot flushes, I just don’t know what to do with myself. I think a good option is to spray myself and stand in front of the fan.

What a sorry sight I must be standing in the darkness of my bedroom. One boob, no hair, bald as a badger and sweating from head to toe. I know what a beautiful site you must be imagining right now.

Eventually the hot flush subsides and I contemplate going back to bed. However it’s not that simple, the intensity of these hot flashes mean that I am wide awake so sleep is not an option for a while to come. Thank goodness for recorded episodes of “The Block.” I promise you, this has saved my life. Combined with the fact that my husband can sleep while I have the TV on its such a blessing.

I eventually wake at 6:30 AM after falling asleep around 4 AM. I feel like I have a hangover, I really need to sort out this insomnia. How on earth is anyone meant to function with no sleep.

In general my pain is a little less today, I’m tired but I’m getting used to plodding along anyway. Again no rest today too many things to do. I need my blood test to track my body’s response to the last round of chemo as well as seeing if I’m ready for the next round.

I also have a visit from two good friends both are also work colleagues and keep me in the loop as to what’s been happening in the world of business. One of them is a lady in a complimentary business that we have worked with the years. The other has been my partner in business so many years. Both of these women are tremendous gifts to my life.

At the end of their visit my business partner mentions that if I am open to it she may consider buying me out of our business. This comes as both a shock as well as an opportunity. Because I don’t know what the future holds it may be worth considering how I can simplify things.

However, another part of me feels like one of my dreams has just been taken away. We always had a big vision for our business. To think this may change in a way that I never expected challenges me. Again I need to take some time and see what is going to be best for me and for the business. I also need to remember that her intention is to take pressure off of me and give me the space to get better.

I went for another swim tonight. These hot flushes are so exhausting, depleting, disgusting, frustrating. My hair that had just started to grow back has begun to fall out again. I think I’m going to go for the clean skin that look and just shave my head whenever I need it. I don’t want to look like a sucked out mango. Again another beautiful visual for you all.

I take myself out to the movies

IMG_1004I slept again – woo hoo! I could get used to this. I am feeling a bit yuck in the head, and still as tired as heck but I’m remembering what Human can feel like.

After I get the kids to school and do what needs to be done I decide to take myself to the movies today. Kylie no friends, how liberating! I really wanted to see August Osage County and hadn’t had the opportunity until now.

Have you ever gone to the movies alone? I encourage you to do it. The first time I was so uncomfortable thinking every one would be looking at me and judging me for being alone. But like most things in life, no one cares. It is actually incredibly freeing. Realising that you don’t need anyone else to entertain yourself or do things you want is very empowering.

I arrive at the cinema and I am alone in the theatre except for one other. I take about 3 seats to myself; unpack my healthy goodies I packed and sit back to be entertained. Entertained I am but it is an incredibly sad and heart breaking movie. What a powerful story. It really impacted me and made me feel so blessed for the family I have and the love I am surrounded with.

Yes we all have our baggage and crap that occurs. Every family has a few skeletons in the closet that’s for sure. If they say they haven’t they are just having themselves on.

When I arrived home I was greeted by an incredible bunch of flowers from my networking group 4N. What a beautiful thought and gesture. I feel so much gratitude for these people that are willing to reach out and let me know I am in their thoughts.

I haven’t rested today so I am totally whacked by nightfall. I do an experiment tonight and decide to try to sleep unaided by sleeping pills or pain relief – am I mad or not? Let’s see hey?

 

 

The pathologist from hell

needleThe following is a true story and has not been enhanced for dramatic value. After seeing the genetic counselor I was sent to the hospital department that takes the blood and gives us the results.

I find the department in the maze otherwise known as the public hospital. I take a ticket and get in line, literally. We are all starving, it’s been a bog day and it’s now 230 and we have not had lunch. In addition to cope with the stress we are all beginning to act a little bit crazy.

I am finally called by a man who looks more like the maintenance man than a pathologist. He has a thick accent and even thicker glasses.

He has to get within 10 cm of the vials and all the needle paraphernalia to get what he needs. I’m thinking “Oh shite this could be interesting” He asks me to sit down, I try to make a joke to loosen my tension but he just looks at me over his glasses, not impressed at all! Even my comic genius is not going to rescue me from this.

He puts on his gloves and his hands explode through the ends of the gloves. He cusses under his breath and proceeds anyway! I am thinking that the purpose of the gloves has been destroyed but he keeps going. Oh well his risk hey?   I’m a pretty toxic chick these days.

His face gets within 10 cm of my arm and jabs the needle in to take the blood. It hurts a little but it’s not too bad.  I’ve had so many procedures involving needles lately it’s just another one.

He says to me “Go and waiting room for 10 mins then I will take a second sample of the blood.” This is something peculiar to the genetic test. I just want some lunch 🙂

During the 10 minutes of me in the waiting room laughing with my sisters about; my luck of getting a blind pathologist I can’t understand, who doesn’t have a sense of humour, whose hands don’t fit into the gloves, he calls me back in.

I enter the room and sit down. He puts on another pair of gloves, pushes his hands through the ends again and seems to swear in his native tongue. I stifle a laugh.  He’s like a pathologist version of the hulk.

He takes the dressing off my arm I say to him gently, “Your not going to take blood from the exact same place are you?” He looks at me over his glasses again, mumbles something in his thick accent and proceeds to jam the needle into the exact same spot as the previous needle!!!!

I gasp but steel myself; this man will not get the better of me! I’ve been through worse than this and I just need to get out of here. Soon enough the ordeal is over, I am still shaking my head as he is filling in the paperwork. This man with coke bottle glasses, dressed like a maintenance man, with these gloves hanging off his hands like the clothes on the incredible hulk! How can I do anything else but laugh?

I leave; I thank God it is over and take a deep breath thinking soon we will know the truth of our genetic heritage. My sisters are waiting I anticipation to see what has happened this time.

We leave, I share, we laugh, we eat lunch and I take my sister to the train to return home to her family. I know she is burdened by what might be, I am too but still feel empowered by the process. I encourage her to try not to worry until we know what we are dealing with. There is no point in spending all of that negative energy on something that may not be.

She agrees, bit I know her too well she will go over this a billion times before we find out. What a day….. What promotes strength for one, promotes fear in a other.

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.

Ding! Ding! Round 2

ding ding R2I haven’t slept well at all, I am wide awake for much of the night. Staring into space. I am so caught up in my thought world I don’t even realise I am awake. I keep catching myself just laying there staring into space captivated by my own dread and anticipation of what is to come.

I lay there and pray for peace and a calm mind. I am praying for a sense of purpose in all of this madness and waiting on God to let me in on His plans. As the sun rises I get up and do something probably a bit stupid but hey that’s my prerogative isn’t it.

Of all things to do, I weigh myself. Of course this will make me feel better 🙁 I have gained a few kilos and feel like I am really holding onto fluid. It doesn’t stress me as much as it may have 10 years ago. I know my body is copping a complete scherlacking (I am not sure if I just made this word up or not?) so I need to focus on nourishing myself and easting what I can tolerate.

My poor body has been through the ringer with constant chronic and unrelenting stress, the expectation of just functioning because I need it too, let alone the surgery, trauma and now chemical onslaught.

Marc and I arrive at the day centre, I take my own blanket and some snacks I know I can tolerate. I take some music and some things to do should I feel the need. I’m such a girl scout – be prepared, have options.

Today goes more smoothly than the first, we know what to expect, I have slightly less headaches, my tummy is already playing up but I feel prepared. IMG_1391

By the time 8pm rolls around; the Bus is parked just up the road ready to run me over as I sleep. However, compared to the dread I felt this morning, today has been a good day. Marc and I sat and laughed, as you can see in the pic here, we do have a lot of fun when we are together. He just makes this process so much easier.

I honestly thank God every day for giving me a man who loves me for who I am, whether I look like the woman he married or not. As my body is attacked by this treatment, it will never be the same again. We will never be the same again. But – he still sees and loves me. This is a gift that is beyond measure.

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….

I am challenged yet again

strong brainI have read and heard this very wise quote;

“We are not Human Doings. We are Human beings!” LIGHTBULB MOMEMT FOR ME. We need to be able to be still, to find quietness, to connect with ourselves and (for me) with God. Just be….. Honestly, this really challenges me. I am not sure if I even really understand what this means let alone how to do it.

However, it is particularly important for me as a travel this winding road that I pause and allow myself time to trust God, to give him my cares and concerns. He has promised to carry our burdens.

I am so much a person who was wired to define myself by my works, Am I good enough? Have I done enough? Will I be enough? This journey is teaching me that this is not the case. God has already said that “I am enough.”

He is my stopgap, I just need to lean into Him and all will be well. I really needed to do this today. Shopping was a nightmare. So many people. So much frustration in the air.

Sam and I had fun, we usually do. I am so thankful that he has such a wonderful disposition and sense of humor. He sees himself as responsible for making me laugh each day. How utterly beautiful is that?

We get the school stuff, Sam has a hair cut and by the time we get home I am literally exhausted! I am in bed with aching joints and a lagging persistent headache that will just not leave me alone.

I took Endone to help me sleep. The wonderfully helpful and insightful Edward Zia wrote a blog, click here to read it, about Marc and I and our story that he sent out into the world today. That was so thoughtful. His words were too kind.  He spoke of me as a warrior and being so tough.  Honestly, I am just putting one foot in front of the other and doing what I think is best for me and my family.  There is no toughness form my perspective,

Once again I find myself feeling so thankful for the people around us who just keep showing up and being there when we need it. Just amazing.

 

 

Welcome to a new world!

Kylies Peronal JourneySo it’s my second day as a Baldy Fritz. I woke early and had no energy AGAIN! I spent most of the day in bed, my “To Do” list was not touched for another day 🙁

Today, Sam called me a “silly bald woman” and I responded with “that is your one and only chance to do that!” I can’t even remember of it was out of frustration or him being comical, either way, it’s a fine line hey.

We had our connect group from Church over to our place tonight. What a wonderful group of people they are. They are like family, they walk with us through the tough times and cheer with us through the good times.

This experience has really reinforced just who important it is to have good people in your corner.  Man it just makes the world of difference to have people who you can call on for encouragement, rot listen, to make you laugh, to help out practically.  It is really so humbling.

Tomorrow it’s back to school shopping for Sam and I. Can you imagine anything worse??? Shopping on a hot day in school holidays when every other parent s doing the same thing, with no energy and no hair?

I am beginning to get into the mindset for me next treatment which is only 3 more sleeps away. I have read and heard people say this is one of the hardest parts of the schedule. You just start to feel more energised,  almost human again and you go back for more poison (sorry treatment 🙁 ).

Well it’s back to bed for me and my bald head.  I must say one bonus? It takes me much less time to get ready to leave the house 🙂

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