Yay! It’s Chemotherapy day!!! Part 1

ImageDid you know how toxic Chemotherapy is? Did you know that 9 out of 10 American Oncologists would refuse chemotherapy if they had cancer? That’s up to 91% — a huge percentage that clearly shines a light on the truth: chemotherapy kills. www.cureyourowncancer.org

I wake after a very broken sleep, and realise a sharp reality “Yay! It’s chemo day!!” I pack a bag of goodies; they tell you to take snacks, medication, questions and things to keep you busy. I took some healthy snacks, music, some books and a blanket so I was comfy.

On the way Marc shows me a picture of a puppy he saw in the pet store a few days ago, it is a mini pin (Miniature Pinscher or Doberman) just like our lovely old dog Benjamin. You don’t see them in pet stores very often. He captions the pic with “Please will you love me?” and sends it to the kids.

I think she (the pup) is gorgeous and immediately begin to want to get her and have her all for myself. I go into lengthy justifications as to why it would be a good idea as I will need company and someone/thing to love whilst recuperating, plus I have the time to train her. Yadda yadda – I’m sold…… Now to convince Marc.

We leave in the car towards a total unknown; the car ride is eerily quiet. I play one of my favourite songs by Kari Jobe called “Steady my Heart” with beautiful words about the challenges of life, and leaning onto our Almighty Comforter to get rest. She sings “I’m not gonna worry, I know that you’ve got me right inside the palm of your hand.”  I find my eyes welling up with the anxiety of today and the thankfulness I have that God is with me for every step.

We arrive and don’t wait for too long before our Oncology Nurse “Justin” takes us in to our armchair of destruction. Justin is really relaxed and lovely, he is very aware of how anxious we are and he did well to make us feel more comfortable. He explained everything, answering our enormous list of questions. We take some pictures of me with my new look, the ice gloves. This is to protect your fingernails from falling off due to the toxic effects of the treatment.

He inserts the Cannula and sets up the bag. He leaves me to relax and I begin to feel a headache coming on. I am trying not to imagine the toxin entering my body. My arm even begins to burn at the site of the cannula and up my arm.  I have been told to imagine it as healing light. However, I am struggling with this.  I feel fear erin to grip me.

Justin returns to put another bag up, I ask him what it is and he says, “Oh the treatment is about to start.” I’m am shocked and ask what has been entering my body already, he explains “ Only saline!!”

Oh my, the power of the mind! What a powerful lesson!  So as I am smacked between the eyes with my own over reaction I determine to settle in and get this first treatment done and done well. As the famous quote says : “Whether you think you can or you think you can’t you’re right.

Crucial conversations

goodbyeWhat 15 minutes has changed your life, what crucial conversation meant everything shifted? For me, a recent example was coming home from the hospital after having a routine scan to tell my Husband I have a lump in my breast.

I still remember the look on his face, scared but holding it together for my benefit. Why was this so scary for me? It was because my whole life I have lived under the shadow of breast cancer. My Mother was diagnosed at 39 years old when I was a new born. She has a mastectomy and went on Tamoxifen. A couple of years later when the Tamoxifen was stopped (as is usual with this treatment) she had car accident and they found a metastatic growth in her spine. She had radiation treatment.

A few years later, she was seeing her GP. She told her GP of a lump in the other breast, her GP talked it down and told her not too worry. Perhaps a missed opportunity for a crucial conversation or otherwise a crucial miss.

She persisted and a few months later found she had a second different, more aggressive cancer in her remaining breast. Again she had a mastectomy and began Tamoxifen for a third round. By the time this happened I was 17 and doing my HSC.

After this she slowly but surely developed metastases all over her body and fought the hard fight until she went to heaven in 2003. By this time the cancer was in her bones, liver, stomach and brain.

So I guess another opportunity for a crucial conversation was the last time I spoke to her. She was unconscious and had been for a couple of days. The Palliative care team had told us, any day now. I wanted so badly to be by her side when she passed but was called away on some urgent family business with my ex husband.

I wanted to ensure that she knew how I felt so I read to her what I was planning to say at her funeral. Some may say this is sad or macabre but I wanted her to know how I felt, not just for the rest of the world to know. I think so many times eulogies are filled with things our loved ones needed to know while alive.

So with lumps in my throat and tears streaming down my cheeks I read her the eulogy I had written. She squeezed my hand when I finished which was such a special thing for me, some acknowledgement. Another beautiful but painful crucial conversation albeit one way.

On the way back from my “emergency” I received a call to say she had passed away. I had missed her by 1 hour. I cried tears I thought were impossible to cry. I cursed my ex husband blaming him for pulling me away in another selfish act.

However in hindsight, this was how she wanted it. She had always said she did not wish to be a burden and wanted to be alone to die. I don’t think any of us understood this or believed it so we faithfully sat by her bedside hour after hour.

It was only when I was gone, one sister was in the bathroom and the other was called away to answer the door that she passed away. Then I thought, poor love, was just waiting for a peaceful moment to slip away.

Crucial conversations can occur anywhere and any time, ensure you are open and ready as you may only get one chance.

A New Year dawns

sunrise & jettyIt’s the 31st of December 2103. Everyone except me goes to the beach and I go to my sister Gerri’s. We just hang out and talk and spend time it is really nice, we also go to lunch with some really close friends of hers. I just did not want to go to the beach with my wound still being so sore, the heat is just not compatible with how I feel, and I certainly wont be going near the water just yet.

So I have a lovely day with my sister Gerri, she is a cancer warrior herself and is an inspiration to me. She has had a double mastectomy and has not had reconstruction. We laugh together about the down side to prosthetics. No matter what you do or how you do it they wander. I am sure when I wear mine it has a goal to be a shoulder pad, it always works its way up my chest to the wrong place.

My sister laughs and talks about how hers usually work themselves together into the middle of her chest, still not a good look! At least we can laugh hey!

New Years Eve comes and goes; it feels so surreal. I’ve never been a real fan of NYE, I am the sort of person that believes when you need to change just do it, don’t wait until a new year comes along think of all the time you’ve wasted!

We spend New Years Eve with my family. The kids have a ball, the adults sit and drink, reminisce, laugh and then as soon as midnight strikes we head home completely stuffed!!! I just have no energy at the moment.

I wake at 3am in our friends house having the most incredible night sweat that I can hardly breathe. I get up; go to the loo, splash water on my face and then curl up in the lounge room where it is a little cooler. They have air con but it is ducted and they don’t have it on so I don’t want to turn it on. I lay out in the dark lounge room for hours until I can go back to bed.

Eventually morning comes and Marc wakes up. He reminds me that I need to start taking the Dex (dexamphetamine) in preparation  for the chemo. It hits me, “SHIT chemo starts in 2 days.” Oh man, it didn’t feel real until right now.

I take the dex and a few other supplements I need to begin to take and I am feeling really emotional, like “stop I want to get off, but I can’t. I go and have a cry our friend comes in and spends time with me. She reminds me that no matter what – my mind cannot be touched. My body can be cut and poisoned, but my mind is mine. I can spend time with God, I can focus on whatever I choose too and it will be ok. What a powerful reminder!

We decide to head back home today in the afternoon so we have two sleeps at home before treatment starts. The trip home is peaceful; we are both in our own heads thinking, wondering, “what if” ing.  It is nice to be home in our own bed.  There is some type of unspoken security about your own bed.

 

 

Beyond festivities of 2013 toward overwhelm

overwhelmSo 2013 is my first Christmas with Cancer personally. Due to my family history I have had cancer present and many Christmas celebrations just not in my body. I am trying to keep busy so as to distract myself I think.

It is such a fine line to walk when you need help as you are recovering, but are fiercely independent. It also gets very complicated when your family are so used to you just doing things that they don’t readily offer to help. This then requires me to ask! Something I do not do very well. It’s not that they wont help it just doesn’t occur to them, I suppose I have trained them well (not!).

Christmas comes and goes, it is pleasant and quiet. After Christmas we head up to the Hunter to see more of my family and to stay with some lovely close friends. We have a few days grace before Chemo starts. Something that is in my mind and I try desperately to block it out.

There are so many things weighing on my mind. Firstly, finances. We have an insurance policy in place but the analysis of my eligibility is taking a very long time. In the interim, I am not working and we are spending so much on treatment. Even with private cover we are at least tens of thousands out of pocket so far. That is also because I am doing the two-shoe shuffle using both medical and complimentary medicine. So between acupuncture, supplements, medicine, doctors appointments and surgery gaps it all adds up.

Other things weighing on my mind are the effects of Chemotherapy, what will it be like? I really have not idea what to expect here, how unwell will I be? Once I lose my hair I will no longer be able to go incognito, the game is up! How will my kids cope with a bald mum picking them up from school?

What about my mortality?  Although I do feel that I will get through this and be healed, I am still human and I do have doubts.  What if the cancer comes back?  What would I do?  What would my family do?  Am I ready for what that means?

The future is also weighing on my mind. Even if the cancer does not come back int he near future, how long will I feel like I do? So sore, fragile, emotionally knackered and physically tired. In some of the reading I’ve done some women never get over that. Will my capacity be different? Will I cope with full time crazy hours like I used to do? If not, how will I build a business that I have on my heart to build. I have a big message and a desire to share it, if anything that has only gotten stronger so things will need to change.

How is my family doing? They all seem ok but I know this dance you don’t want to upset the sick one so you keep it all inside. I did it my self for years with my Mum. I am not worried about my Husband we have been really open from the very start, almost offensively open. In fact, on the day I found out I had cancer I gave him an out. I said, “I don’t expect you to stay if you are not up for it.” Poor love was so offended that I didn’t believe in him. It was not that at all; more that I didn’t want to shackle him.

I also need to somehow keep the door open for my boy Samuel (or young man). I know he is scared that he may not have his Mum around and that I am his biggest fan, advocate, protector etc. Yes we have a wonderful blended family but the thought of losing me really frightens him. Yet as a big almost teenager he is trying to be tough and act as if all is well.

Don’t get me wrong I don’t want my family to be solemn and walk about sulking all day because of this, I just want us to be able to be real when we need to be. So I feel like it is my responsibility to create that environment. Now I just need to work out how……..

Your body is like a car

old car

What do you yearn to drive? A Ferrari, Maserati, a Bugatti, a sleek Audi, a Mini cooper, the potential list goes on…..

You may not dream of a lovely car, you may be more practical and dream of a house or crave a luxurious holiday. So if you don’t dream of a car what do you drive currently? A sleek, clean, well maintained vehicle, an unreliable bomb or something in the middle?

Just recently I heard a very powerful analogy that made me stop and think. It was how you treat your car may be a mirror for how you treat your body. At first this may make you say, so what? But take the time and play along.

Many studies have been conducted that state how you keep you car says much about your personality. Forbes magazine in 2009 wrote, “Porsches smack of success. Hondas preach practicality. And, according to a recent report, Chevys proudly proclaim of their owners, “I don’t use the Internet.”

How you treat your car also says a lot about how you treat yourself as a person. If you car is pilled so high with old Maccas wrappers, bubble gum, cassette tapes and old tissues it may scream “disorganised.” If it is clean, there is no dust or cobwebs insight it may scream “perfectionist” or that your car is a big priority for you. Again you may be somewhere in the middle.

For me, I expect a lot of my car; I don’t maintain it, well. I expect it to start without issue and not to breakdown. I only notice it really when it isn’t working. That is much how I used to treat my body and my health. No nurturing in sight, how sad for my poor body, it had to scream for help before I was forced to stop and listen.

This is a powerful analogy for me because to showed me that I took both my car and my health for granted. And who knows that the fastest test to rectify this is when what you have taken for granted is taken away.

So when I was diagnosed with breast cancer I was forced to stop and take stock of how I had been treating my body and my health. I had expected to always have my health, that nothing would ever get in the way of me doing what I needed to do each and every day.

It is a very different reality now, after 3 surgeries, Chemo and Hormone treatment my body is screaming out for some time out and nourishment. I no longer can take my body for granted, in fact it is more like, “what will my body allow me to do today?”

So although this may seem like a silly topic without much meaning I ask you to take the time and consider how you treat your car, and or your body. After all they are both vehicles we use to do whatever we need to do.

If you need to carve out a little extra care for your beloved vehicle / body please do it before it just stops working from pure exhaustion. It’s always better to prevent a problem from ever happening than to begin to treat it after the collapse.

 

A letter to myself

random-act-of-kindness Dear Kylie my love,

This letter is a letter of love and caring. You have been through a lot my sweet, and there have been many lessons to be learned. Why? So you don’t have to learn it again my sweet girl.

For as long as I can remember you have been very good at caring for others, putting them first and putting yourself last. This can be no more my dear. Things need to change. God has loved you through this experience and one of the biggest messages he has shared with you, is your value. You too need to be loved, to be cared for, to have space and to protect your heart.

You need to feel ok to say “No” to allow others to learn the hard lessons for them. It’s important that you don’t feel like you need to carry the world on your shoulders. Those old childhood fears and hurts no longer need to drive your actions my love. You can now rest and trust that you are not responsible for others, for their outcomes or for their hurts.

Carrying such a burden is such a heavy load and I believe to a large degree is why you have ended up where you are, sick, tired and empty in so many ways. Yet you still yearn to give and give some more.

You have loved where only anger has been reflected, you have given of yourself without return, you have felt responsible for things you have absolutely no control over, all of this is completely emotionally and physically exhausting.

Change is required and it is necessary my sweet girl. You have such a big heart and such capacity. How long has it taken for this to catch up with you? So many years, this has been building and building. Imagine how much is possible when you let go of what you cannot control and give back to yourself. Imagine when you allow God to heal you completely (from the inside out) and make you whole again, the possibilities are endless.

I know you want to make a difference in this world, to share with others and to help them live lives of hope and significance. To do this, I believe you need to love and nurture yourself, love others fully and freely but let go when it is wise. Allow others to experience things for themselves; you don’t need to protect them. Realise that not everyone will understand or appreciate your journey and that is ok.

This is your journey, your experience and your life. Do what you can, make it a beautiful testament to those who have loved and supported you. Allow our gracious and merciful God to be glorified through your life story.

So what should change? Please love your body by nourishing it with beautiful whole, clean and nutritious foods. Move and stretch your body, allow your muscles to be strong and lean, to support you in all that you do. Allow your ever-questioning mind to be quiet at times, give yourself that gift daily. Love generously, laugh audaciously, spend time with people that grow you and love you. Don’t do things out of some weird sense of obligation. Stop fearing rejection from others, you are a daughter of the most high King, you have been created, loved and accepted by the God of the universe, nothing else matters.

So with love gratitude and friendship I say to you, dear sweet lovely Kylie, be kind to yourself, allow for change to take place at its place, appreciate your amazing body and it’s strength and resilience and above all remember to love abundantly. xxxxxxx

What does Christmas mean to you?

Monday December 23rdlife is short quote

It’s funny how a cancer diagnosis can change your perspective. We are madly getting ready for Christmas getting the last few pressies for people. As you all know the shops are nuts at this time, people push and shove and I am super tender. Still going bra-less mostly so it helps sometimes to make some people back away and give way to me.

Marc and I are trying to working out what we will cook, it is only going to be small but I still want it to be special. Although I really need to manage my expectations around Christmas and my birthday, my lovely mum spoiled my sisters and I so much. So much so that many have paled in comparison. Like I don’t want much but to feel special. That may be with a thoughtful card or a little something that you know I would love.

In our family growing up Christmas was always huge, with the entire family and friends. It was noisy, fun, we all pitched in, it was full on. There would be upwards from 20 people, some we hadn’t seen in ages. My family is all very close and we would all slip back in where we left off even if it had been ages. I have 3 sisters who have all had 3 kids of there own and one who has 2 step children. All of which are part of the family! I now have one child and 2 stepchildren now and the family feels the same toward them. We have a “WELCOME ALL” policy that I love. I know it is a bit weird for the newbies for a while but mostly they come around.

I also LOVE giving presents and try so hard to get people what they really want and for it to be a surprise – not too many expectations hey. However, since both my parents went to heaven, we rarely all get together at Christmas. With growing families and the pressure of life, we don’t do it any more. Some of us have stepfamilies and ex husbands that grows the family tree and adds to the complexity of meeting every ones needs at such times. For some reason, when Mum and Dad were alive we all trekked across the country to be together, now we don’t and this makes me sad. However, I am a part of this problem too, life becomes overwhelming.

So I have my new family, (since marrying the wonderful Marc) which is much smaller than what I am used to at Christmas. There is always Marc and I, Alison and now Eliza and a varying number of kids. My step kids usually spend Christmas with their mum or if not they fly out that afternoon or the next day. Gran dad (Marc’s Dad) comes for lunch but is so elderly and in bad health that this is really hard to manage. This year my son Sam is with his Dad for Christmas, so it is very small. Moni will be here before she goes to her Mum’s then there is Marc, Alison, Gran dad Eliza and I. It will feel so quiet compared to the Christmases of my past.

I am trying to manage my expectations of the day, I want it to be special but I am also not up for much either, such a strange place to be. It’s funny how when life gets potentially ripped from you, the importance of such days seems to grow. There is a big lesson in this for me. I want to live each day like we may not have it again, without regrets and without holding back. I want appreciate all I have been blessed with whole-heartedly every day.

Great Expectations

dignity mj fox

Sunday December 22nd 2013

Eliza our beautiful niece was dedicated at church this morning; a welcomed and wonderful distraction from my burdening emotions and myself.  I was fortunate enough to meet Heather an amazing woman who is a 30+ year survivor of breast cancer. She is also a breast care nurse and is keen to support in any way she can. It is a really lovely morning, people keep telling me how radiant I am, I certainly don’t feel it. Although who would say, “geez you look like crap!”  I wonder if they are just being kind?

Many people have said “you look better than we thought” It also makes me think what do they expect to see? Perhaps a waif like version of myself close to death, with grey skin and sallow eyes? Nope I am me, somewhat swollen, slower, boobless and a little fragile, but me.

When you think of someone having cancer what do you think? Interesting question huh. So many friends have said “wow you look different to what I expected,” or even have said “sorry but I can’t do this”. Some have been silent.

I just don’t want people to fear seeing and speaking to me. But with the greatest respect, each of us have our own journey. You do things your way and I do things my way. This will always be the case.

To be honest, at first it was hard to deal with peoples reactions. I suppose because I had not choice about whether I went through it or not. I just wanted support when I needed it and to be heard. I wanted to be acknowledged and speak about “Cancer” if I want. I certainly don’t want cancer to be in every conversation I have.

In fact, most days when the thought comes across my mind “I have cancer” I don’t really believe it, it does not seem real to me. Even as I sit here and write it is like I am writing about a fictional character.  Self protection I suppose….

So many people have said “Oh I expected you to look so much worse!” I wondered is that a good or a bad thing? I have actually had someone say when I mentioned chemotherapy “cool you will lose weight”, not a word of a lie. Unbelievable huh? But I also realise that this comment was about them not me.

Who on earth really wants chemo so they can lose weight? How tortuously sad that we feel this burdened to look a certain way that even the idea of being subjected to deadly toxins will at least help you lose weight?  The sad irony is that Chemo actually makes you gain weight in some case and also just as bad (or worse for some) makes you bloat. So you don’t even win on that front. Bald, boobless and bloated how beautiful….

I just want to be noticed and treated normally. I want to be heard and supported. I want to useful, to be allowed to support others; this is the best thing for me. Let me do something useful so I feel like there is more to my life at the moment. I crave purpose; each major life event like this means more for me if I can help someone else. Let’s make this awful ordeal at least useful to others.

 

 

Overwhelming emotions

sad girl

Saturday 21st December 2013

Monica is home from South Australia today, she has been visiting her Mum. I am feeling generally anxious, I am adjusting to the new me, coming to terms with my diagnosis, I’ve had my haircut. My sister in law is also visiting with her baby, who is sooo cute!

I walk into the lounge room to say “hi.” Marc is there with Moni and Al & the bub (who is breastfeeding). The first thing Marc says to me out of nowhere is “stop Kylie your scaring the baby!  The baby says where is the other one? There’s only one!”  Moni is sitting there confused saying “what do you mean there is only one???”   I knew straight away what he meant and I knew on some level it was a joke, but I did not know what to say or do and I just dissolve into tears.

DISCLAIMER: please understand that my husband is one of the most giving, loving kind hearted humans on planet earth. He is a fun loving wonderful person and to cope with tough things sometimes he jokes. Marc would never intentionally do things to hurt me. To make things even more confusing for him, sometimes I even start the joke or laugh at his jokes but today unbeknownst to him I was fragile.

I go to the bedroom and cry from my soul, I haven’t done this yet and I guess I really needed too. I am sad at the silly unintentional joke made, but I think this emotion also just needs to come out. I lock the door and I literally cry my heart out for a good few hours. Marc comes and knocks, so does Alison but I just say “please leave me alone.” Marc doesn’t understand, he has no idea what his unintentional expression has unleashed in me. It’s ok, I will explain when I can, but for now I batten the hatches because this pent up emotion is coming out.

We have friends coming over later and have dinner with us – I don’t come out for ages as I have swollen eyes, a broken heart and just don’t want to face anyone. Thankfully these guys are the type of friends that just accept and love you wherever you are.

I begin to ponder about the idea of what will Marc find attractive about me when I have no boobs, no hair, no female hormones, what is left to make me a woman? What if he looks at me and is repulsed? Every physical part of me that makes me a woman is going to be cut out or poisoned so it no longer functions. Lovely thought huh?

The needling begins….

acupuncture

Friday 20th December

Today is my first session with Amanda for acupuncture. I have had acupuncture before. My body responds well to it.

“So what is it?” I hear you say….   Acupuncture involves inserting fine needles into specific points on the skin – or applying various other techniques to the acupuncture points – to restore balance and encourage the body to heal itself. Scientific studies have shown the potential for acupuncture to be effective in treating many disorders. Acupuncture is effective and safe when performed by a skilled practitioner. Source (Better Health Channel Victoria, November 2011)

The first time I had acupuncture was when I was pregnant with my son Samuel. At the time I was under extreme stress, my first Husband was an alcoholic and drinking like a fish, I was working to support the family, my father was diagnosed with cancer and at the time he was caring for my mum who was chronically unwell with the outcomes of years of metastasised breast cancer.

It was an amazingly stressful time. I was about midway through my pregnancy and my blood pressure was too high. Funny that! I was determined to have my baby naturally so when I was told I may need to be admitted to hospital for the last weeks of the pregnancy I asked what I could do to help myself.

I was told acupuncture may help and I found a lady in the Blue Mountains who agreed to help me. I had 4 sessions, each time I would arrive with my BP at 145/95 or something similar and 45 minutes later I would sail out Zhen like with a reading of 110/70 and this would last for 3-4 days. It was amazing.

The second time I tried it was soon after I married the wonderful Marc and moved to Inner South Sydney. After an old back injury came back I saw a local physiotherapist who uses acupuncture in his practice. I had back spasms that normally took up to 10 physiotherapy sessions to steel, he sorted me in 2 with acupuncture.

So in short, if you haven’t tried it and you are open, have a go! It has been an amazing addition to my wellbeing toolkit. Just in case you are freaked out by needles, it is not like having an injection, the needles are as fine as hairs and do not hurt.

I meet Amanda from Sydney Integrative Medicine, who is lovely. She takes my history and tells me she has just been diagnosed with Hashimoto’s of the thyroidalso wow! She explains that the acupuncture will help my liver cope with the toxins ( surgery, drugs, chemotherapy)  from surgery and treatment, will help my digestive system, and my kidneys function optimally. It will also help me to relax and manage the enormous emotional and physical changes I have been through.

She puts needles literally everywhere, as she does this she explains what each point is for. This I love – I am an information freak. I then lay there for 20 minutes relaxing and allowing the needles to do their work.

The first needles were to relax me and were in my side. I felt immediately like I had had 2 glasses of wine, it was amazing. Teach me that one! I would love to do that whenever required, perhaps a permanent needle implant there would be great.

After the session I feel relaxed, balanced and empowered. I learned a lot, Amanda is very gentle and wise and I feel like she will teach me many things over coming weeks and months.

I will see her again after chemo which starts in about 2 weeks and then probably weekly after that. My next appointment is made for day 5 after chemo begins.

Can I encourage you; if you know of anyone who is going through treatment for cancer, anyone going through chronic illness, anyone coping with ill health or chronic pain, please share this blog, or what you have read about acupuncture. Seriously, it has made such a difference for me and I would hate to think of someone missing out who could benefit. We all deserve to feel the best we can, and to be able to make informed decisions about our own health management.

The hardest thing about cancer is that the treatment can be worse than the disease at times, and at least complimentary medicine supports your body to heal and for you to feel stronger and almost human again.