Bald Barren And Boobless

An honest and comical reflection of my journey through breast cancer

Tag: recovery (page 2 of 3)

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.

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.

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….

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 🙂

Anyone for Scones??

photoSam comes into the bedroom really early. He is really hot and feels sick. It is a really hot morning so I ask him to come sit with me by the pool. He ends up getting in the pool to cool down and I stay on the side.

I’m sitting there when Marc comes out and says hey babe there is a heap of hair on your top. I touch my hair and it just comes away in my hand like fairy floss. I wait for the dread, for the tears but I just kick into ‘manage it’ mode again.

I go onto the bathroom and just keep pulling handfuls of hair out. It’s Sunday and we are due to go to church. So I ask Marc to give me a buzz cut. I didn’t think I would cope with Marc doing this but I am really ok with it.

Marc performs the deed and we do some silly shots along the way. After all when else will I have the chance to have a real Mohawk??? (See picture above.)  Yes I was trying to look like I and attitude – you know punk rocker isn… not sure if it worked…..

I am surprised at how ‘ok’ I am. I was so worried about the emotional weight this process would take but I actually felt free. I felt at peace.  Marc takes a photo of the two of us, (see next picture), and before I know it he has posted it on his timeline on FB!

IMG_1386

Under normal circumstances I would not want my photo posted at all, let alone my first bald shot.  Again I was ok with it.  I did ask him to let me know “before” he does that just so I am aware.  But still amazed at how I felt.

I wear my cap to church for the first time. I feel like I stand out like a sore thumb but I will get used to it.  One yucky thing is how hot my head is.

In the foyer at church Marc is talking with a new woman he has just met, (he does this all the time). He introduces me to Helen from Chicago. She is a bubbly friendly woman. It’s her first time here, she is on holiday and has popped in.

As we are walking into the service, she stops me and says “can I ask, have you got cancer?” I respond openly “Yes, Breast Cancer, I lost my hair today so this is the first time I’ve worn one of the hats.”

Helen tears up as she explains to me that she is a breast cancer survivor and this is her anniversary celebration trip for ceasing treatment. She explains her hair has grown back and she is feeling human again. She looks me right in the eye and says “It’s going to be ok.” By now we are both crying and hugging. It was just such a beautiful miracle to meet her on the day when I was feeling vulnerable and unsure.

The gift of meeting Helen that day will never be forgotten. This is another example of how God has just provided for me when I need it. I am so blown away at the miracles and endless support and love that surround me.

I never thought I would say this but my B day has been such an amazing day. It has been such a gift in more ways than one. Now its time for me to embrace my scone.

Finding my inner child

letting-your-inner-child-outI am awake at 230am in a complete sweat, I had to spray myself and stand in front of the fan to try and cool down. I eventually go back to bed, but it is only broken sleep interrupted by bouts of me being on fire.

My head feels cloudy today, unsure if it is because I had a glass of wine with dinner last night. Found it hard to say No at the lovely French restaurant.

I decide to do some light pilates today, try and get this body moving again. We also had a professional development session with one of my business mentors. Despite stopping work and pausing the business we decided to continue to invest in ourselves and in the business.

It was a great session in fact it is where the idea to blog is born! I feel so determined to share my experience so that others don’t feel alone. I know everything I have read has helped me to feel less weird and more part of a community of people experiencing similar things.

I saw the psychologist today, he was recommended by my Naturopath. She said that the shock of such a diagnosis and surgery etc can take quite a toll and also can sneak up on you. I have felt in coping mode since it all happened and wonder if I am ever going to crumble or lose it completely.

It was a really interesting session. There was a real focus on me and acceptance of myself. For me to focus on what I am doing that works and to learn to appreciate myself more. Such foreign concepts for me.  Another bonus is that he is a cancer survivor, so he knows what it’s like to be part of “the club.”

We identified that the part of me that had to grow up really quickly at 8 years old when my Mums cancer had spread to her bones has been a real driving force for me. Whenever things get tough I go into Mrs Fix it mode as the expense of my own well being. This little girl who needed to be loved and protected from the fears of her mum dying felt she had to forgo those and be the support for her family. Too much for a little girl to do. So its no wonder I turn into a workaholic, lacking the ability to nurture myself or be kind to myself.

So I will be learning to reconcile with that part of my past, I will learn to allow my inner child to know she is safe and loved and learn how to be carefree. Something I have no concept of.

Lots of learning here for me, but I am excited. I always promised myself I would take whatever I needed to take form this experience, to learn and grow. I will not go through this without taking from it all I can to become all that God has destined me to be.

I am already seeing how little I took care of myself. How I have always given so much to others but rarely replenished me. No wonder I have felt exhausted for so long. How exciting to find my inner child, to learn how to be carefree, to have fun, to fill myself up so that those in my world get the best of me!

Tonight we went our for dinner with our close friends to the Red Lantern in Surry Hills, such a yummy place to go. If you haven’t been please go, it is truly amazing Vietnamese cuisine. Even with my struggling taste buds it was amazing.

All in all a great day, a long one, but a great one. Now me and my inner child are going to bed.

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.

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.

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