The rise before the fall

rise fall arrowToday I woke feeling okay a little sore but okay.  Today is a busy day I didn’t stop all day between doing a little ‘Pilates’ to keep me moving, then washing, shopping and cooking dinner; phew!! It’s been a big one.

I had a great chat with mr Bonus daughter morning today about her ideas to the future. She’s so keen to explore the world and do a gap year after she finishes year 12. I believe it’s such a great idea for her and what an opportunity that may never present itself again.

By afternoon I’m ready to relax. I put my feet up and watch some mindless TV.  I have such a pile of books to read, I think I’ve bought everything ever written on the subject of breast cancer.  I’m doing this because I want to connect with the universal experience whilst knowing that my own experience is very individual.

It’s amazing what a gift that is reading about someone else’s experience and seeing how you relate to that. There are so many weird things that happen to your body during this journey that only another person in the same journey can share with you.  So many little things that seem almost too weird to talk about I will find in the pages of a book and suddenly realise that it’s okay.

For example, since starting chemotherapy my feet have been so painful.  To the point where first thing in the morning I can hardly walk.  It’s like plantar fasciitis but more painful for me.  I struggle so much with it.  It’s weird how sore feet make the little things so much harder.

Otherwise, I’m feeling pretty good in general.   It’s actually quite sad to think that I’m going to feel like crap again soon.   I’m also approaching my birthday which is always a weird day for me.   It’s weird for many reasons.   Firstly because my beautiful Mum is no longer with me.  She used to spoil all of us so much on our birthdays.  It wasn’t about spending lots of money but about making you feel like a princess that the day.

Secondly, in my first marriage, as the relationship deteriorated I had at least four birthdays where the day was forgotten by my ex-husband altogether. This was really painful for me. I then separated on my 30th birthday which is also a painful memory from me.

I’ve taken so much baggage along with me that my birthdays are always and mixed bag of emotions. This one will be interesting not only because of the journey I’m on, but also because I’ll be in peak time of the effect of the chemo on my body. So I’m lowering my expectations and hopefully things will all go well.

It’s the simple things in life….

change processAfter not much sleep I’m up early the church today. I’m feeling generally okay just a little flat. The message at church was exactly what I needed to hear. It was a message by Ben Houston all about the challenges that comes from every angle when you begin to pioneer again.

I feel like this is a new and defining time for me, for my business, even for my outlook. This journey is teaching me how to redefine myself, to look at what I want for my future and my life, to define what works for me and what doesn’t. I don’t know if you ever noticed this but in my life each time I try and gain ground challenges come up. This is exactly what Ben is talking about.

It’s so important that as the challenges turn up they don’t throw us off course. In the middle of a battle it’s so easy to give up or change direction thinking that is the answer. I don’t know how many biographies I’ve read of successful people that have explained how close they were to victory when they almost gave up. I wonder how many people have been in that exact position except they have given up. I am determined not to be one of those people.

The enemy uses lies and deceit to throw you off course, however, my trust is in God.  I know He has a plan and a purpose for my life and He is always with me. This journey of cancer is a refining process for me. A way of stripping off what is no longer helpful and putting in place practices and mindsets that will help me achieve what is in my heart.

After church Marc and I went to the beach, I took Betty (our pup), went for a walk and then read a book. It was so nice sitting under the shade of a tree with my cute little puppy just spending some time. It was nice to do something so normal for a Sydney summer but something that we have not done in such a long time.

It was a powerful reminder how getting back to basics and doing the simple things can bring so much joy. I want to do more of this, I feel almost normal like I’m not in the middle of this battle when I do things like this it is a welcome rest. I’m only four days away from my next treatment so I am beginning to feel good again. I need to begin to prepare myself for the next round of chemo.

This is just as much a head battle as it is a physical battle.  I seem to learn and understand this more and more very single day. Some may say I’m a slow learner :)

Choosing your battles

animals-fighting-4What a celebration! Last night I got to sleep without Valium yay! Today I see the physio who specialises in lymphatic drainage.  My Oncologist told me at the last review that my arm is a little too swollen for her to be happy with.

Thankfully, the physio said I do not have lymphoedema just normal post surgery swelling. Thank goodness another blessing for me. I saw so many women in my support group that struggle on a daily basis with lymphoedema, I did not want this for me as well. Selfish I know.

He gave me some massage and stretching tips for my scar and chest to increase mobility. My surgeons have not mentioned to me the risk of losing function if you do not increase your mobility with support. The thing that frustrates me about this is that no one told me this I found this out purely by luck.

Apparently there are many women who lose normal arm function following this surgery!!  Women who cannot return to activities, sports or even personal exercise programs wight he same function.  I felt it was unacceptable that I had not been told this.

The physio also challenged me when he asked me about reconstruction. He said to me, “who are you doing this for?” I replied, “it’s a combination of for myself and for my marriage and husband.” I don’t think he understood completely where I was coming from and he began on a rant about how big the surgery is and how dare someone else expect me to do that for them. I was quite taken aback and surprised at his response.

This was obviously a sore spot for him for whatever reason. He asked me about my expected timeline with surgery and recovery and then said that my timeframe is unrealistic. Wow, another blow for me. At the time I thought “I’m so tired I don’t have the energy to get into this with you.”

Anyone who knows me knows that this is not my usual response. I love difficult conversations and don’t like being misunderstood. However, today I just need to leave it be.  I needed to choose my battles

When I got home Marc and Moni have gone to do some driving, Moni is on her L plates and keen to get her P plates by July when she turns 18. I decided to do some Pilates & shake off the yucky feeling I have leftover from the conversation with the physio.

He has planted this horrible seed in my mind that my loving husband is being selfish. I know this is not the truth he has never asked me to have reconstruction for him.  As much as I know my own truth I can’t shake what this man said to me today. I’m also thrown by his statement that my own timeframe for recovery may be unrealistic I need to put this aside until I speak with my plastic surgeon.

I had a word with Marc and told him what the physio had said, he was so supportive and felt this guy really dumped his own baggage on me.  I must say I agree, Im so glad I can talk to Mar about all of this openly.

Tonight my love and I go out to see a movie and have some dinner. It’s been such a long time since we’ve had a date night, we promised each other that we will not talk about cancer, surgery, money problems or anything else that is causing us tension. We have such a lovely time; we laugh at the silly movie and just enjoy being in the same space together.

When we get home my body is so tired but my head is wide awake. I try to sleep to no avail so at 2 AM I relent and take a sleeping tablet.  It’s all about choosing your battles.

Another visit to the Oncologist

cancer graphic

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!  Small gifts, I’ll take them all.

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

support image 1Again I slept a little better, I think it was because it was a cooler night. Having such cooler weather 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

popcornAgain 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.

Apologies one and all

overwhelmHi all, thanks so much for your ongoing support. After our viral computer infection and email hacking we have changed a few things and are now moving the website from wordpress to our own domain of Bald Barren and Boobless (www.baldbarrenandboobless.com)  Not a domain I ever thought I would own !!!

During this transition, please be patient. I am inept at best when it comes to technology, my lovely husband is working tirelessly behind the scenes to make this all work. So if it is a bit clunky for a little while you have our apologues ahead of time.

I am looking to post more resources this year, so if there are any particular questions or concerns you have or would like answered please let me know. If there are particular issues you would like covered again please let me know so I am be of better service.

This blog began so I could share my story for the benefit of others. I have been blessed greatly in doing this, by hearing your stories, getting such support for you all, and sharing my story has been very therapeutic for me too.

2015 is a year of giving back so I really mean it when I say if you have specific questions or concerns ask and I will do my best to answer them for you.  Whether they are about my experiences, your own or someone you love.

Have an awesome day all :)

In happiness and health

 

Kylie xx

 

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…..”