Bald Barren And Boobless

An honest and comical reflection of my journey through breast cancer

Author: Kylie Warry (page 1 of 7)

Another visit to the Oncologist

Another night of better sleep, again this cool weather is such a gift. Today I’m off to see my Oncologist again. They always see you in between cycles of chemo to make sure that you are on track.

I join the other women in the waiting room all at various stages of treatment. Some have hair, some wear wigs, somewhere scarves. We all share the physical and emotional scars of this journey. There is this unspoken link between us all, this unspoken understanding that is hard to describe.

You know just by looking at each individual that there is such a powerful story that is their life. Whether or not they’re married or single, parents or not, doing well or struggling. Much of this is hidden from public view. It is only by being on a similar journey that you see the burden on the shoulders and the sadness in their eyes.

My Oncologist tells me that my white cells are now too high. This is because the injection that I need to give myself after chemo has been too effective. the blessing to me is that I really need to give myself three injections after chemo now not five. Woo hoo!  Another small gift, I’ll take it!

My Oncologist also gave me another script for Endone and Valium, to help me sleep and to reduce my pain levels. She described that not everybody gets the joint and bone pain that I am experiencing. She also explains that unfortunately this may mean that my response to Tamoxifen will be similar.

She refers me for some lymphatic drainage massage and I have an appointment for the weekend. The funny thing on my list the today is to have lunch with a very good and very caring friend. She cooks me a healthy and beautiful meal and we just sit and talk. It’s so refreshing to just sit and talk about other things than cancer. It’s amazing how in such a big and busy life that cancer can become the focus. I don’t want this to be the case so this is a lovely and refreshing change.

I get home and have a short rest, yay I’m learning! Unfortunately the rest was not long enough and by 8 PM I can no longer think straight. My entire body is aching and I need to go to bed. It’s been a big day it’s time to call it a night.

First day at support group

Again I slept a little better, I think it was because it was a cooler night. Having such call with air in January and February is such a blessing for me. However I still woke feeling like I had been hit by a truck.

That damn truck is never too far away. Thank goodness I have acupuncture today. It always helps me to rest, she always addresses my worst symptoms, I always feel better afterward. If you are going through any challenging illness and have not tried acupuncture I really encourage you to see if it would work for you. How do you know if you don’t try?

I’m so flat all I can think about is my bed. After I finish acupuncture I head straight back to bed. Today is an exciting day, I get to attend my first breast cancer support group tonight. I’m both excited and a little nervous.

I am usually the person running and organising such groups. I’ve always believed in the power of groups. When I went through my divorce the support group literally saved my sanity. There is something about being in the company of people that truly understand that your journey that is so healthy and helpful.

Support groups allow you to see that you are not alone. That is the wonderful thing about them. so I will put on my brave face and go and check it out. That is the least I can do.

The people at the group were very welcoming and have all been through some amazing journeys. Tonight I’m the only one going through current treatment so I feel a little bit alone however everyone is so welcoming and willing to help. They have also been down the road that I am on which is such a gift. I leave it feeling encouraged and understood, for this I am truly grateful.

My own worst enemy

 

Again I woke feeling okay but not awesome. Some of you may get tired of reading this because I know I am tired of feeling this. I drag my sorry butt out of bed, get a cup of Green tea and look longingly at the coffee machine. On these days when I feel so flat I crave the idea of caffeine like it you would not believe.

It’s a normal weekday for me, I take the kids to school, I do some household errands, I vacuum and then I decided to treat myself. Again I will be my own best friend and take myself to the movies. Today I am seeing the “Wolf of Wall Street.”  I’ve always wanted to see but had no one to see it with. Everyone else in my world was not that excited by this movie.

It was certainly an interesting experience, I was one of only four in the cinema, an old lady, a woman in a wheelchair, a suspicious man in a trench coat, yes I said trench coat and me. If you’ve seen this movie then you will understand why I felt uncomfortable. I saw more of the human anatomy (mostly female) and also of the dark side of human nature than I ever had before. The fact that this movie is based on a real person makes it even more interesting.

I come home and had a little rest and then get Sam from school. I squeezed in a Pilates session, make dinner and then take the kids to youth. This routine is a great but where do I fit in this one to 2 hours sleep that I am being told to do every single day. Something has to give and I don’t want it to be me. At the moment it is me and its me suffering too much pain and lethargy.

By 930pm I am completely exhausted, I mean I am in so much pain I just needs to sleep. I need to find a way to rest and prevent myself from getting to this level of pain. I also realise I am my own worst enemy.

I have preached work life balance my entire professional career. I am the first person to tell someone to put themselves first, to be their own champion, to take care of themselves because if they don’t no-one else will. How sad that I have not been listening to my own message. This alone is so confronting and makes me feel like a hypocrite.

Luckily I am one determined woman and will not give up on learning this lesson. How can I expect 40+ years of patterning and learning to be unlearned in a few weeks/months. This is part of where my own patience with myself is critical. Tomorrow I have my lymphatic massage I’m hoping it is helpful and that it feels relaxing.

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.

Apologies for being off line

sorry post it

To all my dear supporters,

This is a quick apology to explain why you have not heard from me in a while.  I think it is 10 days now.  We have been on holidays and it was great.  I began learning to surf, I have a whole new respect for the ocean and for anyone who is able to get upright on a board!

Whilst away on our idyllic holiday my computer was infected with a virus and also my email was hacked.  Two separate incidents apparently, but as such I was off-line until the issue was fixed.

I had planned to keep in some contact during my break but good my intention was foiled!

Life can be confronting and scary enough without people breaking into your private – cyber life like that. I felt violated in some ways.  I was unable to use the internet in case my key strokes were being recorded.  My business and private emails were hacked which meant key people and colleagues got very weird messages from me and if they clicked on the link may have been infected also.

So please if you ever get a weird email from anyone don’t click on the link!!!!  Even if it’s your Mum!

It has been a very eye opening experience.  But I am back on line and will post to the blog tomorrow.  I will be starting something a little different this year and making one post each week purely about resourcing you.  Whether you have cancer, know someone who has or just want to be really healthy I am sure this will be of benefit and interest.

If there is something in particular you would like me to cover or share please comment and let me know, I’m an awful mind reader.  Until then please take care, HAPPY NEW YEAR to you all.

 

To your best year yet!

Kylie xx

 

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…..”

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?

 

 

Chemo Day 7, Round 2

carrying a loadI slept better! Thank you Lord! What a blessing… I am feeling very flat but better. Today is another big day of errands and responsibilities. That is one thing I am noticing as Marc has returned to work. All of the little things he was taking care of for me have now fallen on my to do list.

Since I was diagnosed last year we have been on the big holiday break, now it’s back to normal life citizens. No wonder I am feeling it more,  I am doing more so it makes sense.  I am no longer being shielded by my super husband.

My back and legs are so sore, like I have a viral illness coming on, but I am sure it’s the chemo. My tongue is so thick and sore, my hands and feet are swollen and still so sore too.

Today was our annual trip to the paediatrician with Sam then I take him to school and it’s off to the psychologist for me. This has been really helpful for me to just get clarity on what is going on for me. Sorting through all of the crap has been really necessary.

This journey has been hard enough without carrying around fear, avoidance, facing your own mortality and all of the weird places your mind goes when you are told you have cancer. If you know someone who is in his place and they haven’t reached out, please encourage them.

On the way home I am stuffed but need to do the shopping – if my family is to eat I need to get food. I finally get home and fall into bed for a rest. I get up as the kids get home from school and start dinner, do some laundry etc. All the usual Mum stuff, as I am sure most of you Mums (or stay at home Dads) can relate too.

By early evening my legs are so painful and agitated I can’t stand it. The doctor calls it restless legs. I am so tired I just want to sit and be still but my legs jump about and feel like there is a little electricity party going on in all of the nerves. Each time it starts I need to shake my legs to stop it. Not relaxing!

I go to bed and medicate myself again with Endone and Valium tonight. I must sleep…. I make a note to ask the doctor if it’s ok to take Valium with Endone as I slip into a thick and blissful unconsciousness.

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