Cycle 8 Day 8: Another Season

I was born on the first day of summer. We were married on the first day of spring. So it seems only fitting that our first born was due on the first day of winter (well, thereabouts).

It’s a year since I walked to the top of Moses Mountain to read him a letter and say goodbye. I sobbed at every step of the way. I wanted to remember and at the same time I didn’t want it to be over.

I wasn’t sure where the path lead or what was at the top, but as we neared the peak I noticed a beautiful Xanthorrhoea ‘flower’ bent over, pointing to a overgrown path.

 When I saw it I knew this was the spot. Alex and I trudge through the under growth  before it opened up into a cliff top clearing staring straight out onto open ocean. We hugged and cried as I read my letter. The clouds opened up and the sun glistened on the water making a path to directly to us. When I lit the letter and let it burn away, the light retreated, the clouds closed over and I knew he was gone. I was so sad. I hadn’t fully let go. I didn’t feel a weight lift. He was free but I was not.

Today it still doesn’t feel real. I still sometimes think I am in shock. Maybe I have PTSD…. But today will be different to the first day of winter last year. Today we will plant a new pot of lavender. The zodiac flower for Gemini. I will water you and watch you grow as each season passes.

You will be remembered x


Cycle 8 Day 1: Can’t think of a good title yet…

Today I was in scientist mode.

I was labelling tubes, collecting samples, completing request forms and filling biohazard bags. But it wasn’t for someone else. I was writing my own name, collecting my own saliva and weeing into large containers (quite badly I might add). 

The reason? I was doing a set of functional pathology tests which my new GP had suggested. 

 I haven’t really had a regular GP since I left home as an 18 year old. I have drifted through medical centres for the past 15 or so years as I moved from suburb to suburb, state to state and country to country. Maybe had I had one GP then my disease may have been picked up sooner, but I don’t dwell on that and I am not into blame. My reality is that it is advanced and that’s what I have to deal with. 
I found a new Intergrative GP in my village who has one foot firmly planted in western medicine and the other in alternative medical systems. She is into nutritional medicine including herbs and other natropathic remedies and she believes in mind body medicine. Zoe would say she is ‘a little bit in, and a little bit out’. Just like me.  

I pulled the cancer card to get an initial consultation with her. She was not taking new patients, so I was very matter of fact with her receptionist in a busy waiting room. I am not sure if she was embarrassed for asking or taken by my story, in any case she granted me an exception and I got an appointment. I had decided that the current Intergrative GP I was seeing was not for me. For a few reasons mainly his location and the late evening appointment times. He also reminded me of one of my parents friends. Who was a bit of a comedian. I couldn’t get the image out of my head, I couldn’t take him seriously. I knew I needed to find someone else. 

When I first met my GP I told her that I believe I can heal from this, she was the first person to say ‘And you will’. She didn’t look at me with pity. And I never got the vibe that she thought I was delusional about my chances, she listened and simply said with empathy ‘Gee, you’ve been through a lot’. She then went through a list of things I might want to try, always conscious of my chemo regimen and the plans the oncologists have. I am slowly building rapport with her. She is learning about me and I her. She knows about my interests and my profession, so when I last saw her I wanted to share my results from a biopsy test we had sent away for in the US. It is a test that looks for mutations and sensitivities in my tumour tissue. 

My tumour came back with one mutation. It was positive for a mutation on an estrogen receptor. Not the standard type, that is seen in many breast or ovarian cancers (which typically for me and my strange tumour). But it got my oncologist thinking. He said there is new theory that lung cancer in young women, not associated with smoking, could be related to estrogen. This made a lot of sense to me given I had been pregnant at the time, and things deteriorated very rapidly at the end of my first trimester when your hormone levels are rising.

What it means is that there might be some other types of therapies I can trial. It gives me other options especially when my onc is keen for me to have a break from chemo. 

When I went to my GP I asked if she could check my hormone levels. She felt a blood test was a snapshot in time and wouldn’t give an overall picture as to what was going on. She had a better solution. A more holistic approach. So I have been collecting samples over the course of hours, days and weeks. With the aim of looking at how I metabolise hormones and how the pathways in my liver are functioning. 

I sent my samples off today. I’m already curious about the results. I am hoping to take this curiosity to my next scan. Trying to see it as a little bit more information to include into my knowledge bank and add to the understanding of my own body. 

Cycle 7 Day 21: Bald is Beautiful, But What About The Caesar? 

When my hair started to grow back I was nervous. I really loved being bald. I loved the feeling of warm water running on my bald head. I could spend hours standing under the shower just basking in the sensation that was so foreign but so comforting at the same time. I accessoried with bright, colourful headscarves and  called it chemo chic. I got braver and bolder as time went on with my choices. I felt they set me apart and made me unquie. I truely embraced it. And as an ‘ethnic’ woman, living by the beach in summer and not having to go to the beautician was liberating! 

I didn’t want to give up the scarves. They had become a bit of a security blanket. Everytime my hair got long enough, I would have Alex shave it again. I worried that the growth in hair equally growth in the tumour. It was something that I could see physically on a daily basis. It was confronting. But there was also another level to it. I realised that it was a sign to most to say ‘I’m sick. I have cancer’. Pity me, treat me with care, cover me in cotton wool and protect me. Is that what I wanted for the rest of my life?

At first it was hard. I wondered if everyone who I passed in the street who had short hair had had chemo of some sort. Why would you do it otherwise? I had this preconceived notion that a woman must have long hair. I remember getting out of hospital and deciding on a treatment plan. One that involved chemo that would make my hair fall out. I decided to have my thick luscious pregnancy hair cut off in preparation. My Dad saw my straight after and said I looked like a little boy. I did, sometimes I catch myself now in the mirror and I think that too. But I realise now that short hair is for me. 

As my hair grew back, I would notice small things that I had taken for granted. I remember the first time the wind blew through my hair. It was a sensation I had experienced my whole life but it was as though I was experiencing it for the first time. It caught me by surprise and made me smile. Or realising my hair was long enough to dry once getting out of the shower. 

That was about a year ago, and Alex has stopped giving me a number 3 all over. I have been to a real hairdresser a few times now and they have all been amazed at the condition of my hair. It came back soft, shiny, straight and without any grey. I had been dying my hair since I was about 15. I had no idea what my natural colour was…. 

So where is this post going.. 

Last night I had my hair cut for the fourth time (but whose counting hahaha) and my hairdresser said, as she trimmed my fringe, that is was looking a little ‘Caesar’ like. Um do you mean Caesar, as in Julius Caesar??? Yes, she said. How random, I thought. I’d been going for Posh Spice or Michelle Williams, with the plan to get to Robin Wright in House of Cards….not a man who lived 2000 years ago and that we only have stone carvings of. So I am feeling a little less feminine today. Maybe I’ll slap on some lippy and wear a dress. 

One thing I have learnt is that it is just hair. It grows back. And if it doesn’t….well then that’s something I can cope with too. 

The Caesar ……. bahaha

My First Haircut. Love that I chose the seat with the word ‘Hope’ on the mirror

Cycle 7 Day 12: Tell Me What Is Love Revisited. Another Gawler Account.

This is a warning for my Mum….. please don’t get too upset when you read this!! 

I was so disappointed when I realised that the contemplation exercise we were to do was the very one I had done 8 weeks previously. (See my post from Cycle 5 Day 11

I knew the questions, I knew my answers, I knew what to expect. Ok it wasn’t exactly the same because I was doing the exercise with Mum, but what was I going to get out of it?!

I donned the superiority cap (Ms Know It All) and turned to Mum to start the contemplation. 

The first few rounds we talked through the superficial stuff. What love means to us, the types of love, who we love, how and why we love the way we do. Essentially I repeated what I had said during the previous retreat, not diving deeper instead just acting out what I thought were the right things to say. But as Mum shared more and more, I felt I could too. I said that I thought love was innate but I wasn’t sure if I knew how to love. I wondered if it wasn’t in me. I felt like I did it wrong (now there is some good use of the English language!). Maybe I felt like I knew there was another way, a way that was more natural than how I love at the moment. More free, more easy, like I felt during the last time I did the exercise.

When Mum shared that the day I was diagnosed was the worst day of her and Dad’s life, I felt like something snapped inside. She was so upset. My heart broke a little. 

All my life I have tried to please, to do the right thing, to be the good girl. I remember as a child splitting my head open for the second time and saying to Mum when the stitches were going in ‘why does this always happen to me and not Vas. I am the good one!!’ (you know it’s true Vassil!!!!). I tried endlessly to create a perfect reality that was pleasing to me and to others, even if it felt wrong deep down. And although the development of my disease was something that was totally out of my control, a small part of me felt like a disappointment to my family. And now if I don’t get better and do as I am told by the doctors that I will be even more of a disappointment. Ridiculous I know but that’s some times how I feel. It’s not something I like to dwell on but I sometimes think I have ruined their lives and there is no turning back. 

Talking through it with Zoe today gave me some perspective. I told her that when Mum and I sat at the end of the exercise and had to hold our gaze on one another I struggled. Not in the awkward, uncomfortable way I had experienced with my colostomy bag friend but because I was so sad that I had created such pain and heartache in their life. I could see it in her face. I could hear it in her voice. It was the most real she had ever been. And I was the cause. 

I know this is not my fault, I know that no one is to blame. But perhaps in my subconscious I really feel this way and the exercise had brought it to the surface. I was physically having to look it in the eye and it was tough. 

Zoe said I had been fighting this my whole life, it was time to sit with it and be ok with it. Be ok with being a ‘disappointment’, be ok with failure. Be ok with not being perfect. No one is! I need to own it, whatever ‘it’ is because it is real and it is mine. 

I had a strange sense of peace when I left her. Similar to the lightness I felt after I completed the exercise with Mum. 


Well that was a little babble worthy!

I think the chemo is still in my system working its foggy magic on my brain. But I guess another layer of me exposed…. Gotta love self discovery. Always something new to find. Always something new to learn. Lucky I am still interested, guess it’s the scientist in me!

Cycle 7 Day 10: From Nowhere to Now Here

“From nowhere to now here”

As I think back over the five days away, this lovely saying was a reminder of the winding road so far. 

This time around, I was less emotional, had fewer breakdowns and fewer breakthroughs. Infact it became very clear that I already have all the information I need to heal, I just need to get on with it. Review my plan and stick to it. 

For Mum, it was a different story. She got to meet other cancer patients, hear their stories, and bond with other carers. She listened to lectures about mindfulness and contemplation, learnt  to meditate and ate lovingly made vegan food. She even went without a cup of tea for 5 whole days and showed no signs of any withdrawal headaches!

Initially, I struggled having her there. As a child, teenager (even as an adult) I never liked to share with my parents. I didn’t want to share my thoughts, feelings or what was going on in my life. But this all changed with the diagnosis. I let my guard fall. I let the deeper part of me rise to the surface and I let them see me. In the beginning it was easy, but lately I have retreated a little and things got more and more superficial and I’m not sure why. 

So the Gawler retreat couldn’t have come at a better time and bringing Mum along allowed her even greater entry into my new life. She got an insight into what I believe in, a chance to understand my thinking, and see why I have chosen to do what I do. 

It was important it was Mum who came. Alex lives it everyday. He understands completely. He knows me. Vas also gets it and is where I need him to be. Dad, well…..this was definately not a place he would be comfortable in. We bond while watching the cricket or talking science. And for me, that’s perfectly fine. But I need my Mum to understand. I want her on my bus. 

The 5 days created a platform for us to keep building on. It gives us something deeper to talk about, something other than the weather. It also gave me an opportunity to see my mum in a different light. I got to understand her better. To see her struggles, to see her heart and her heartache. 

I wonder if she feels the same? I am pretty sure she does. Either way the 5 days were worth it. For both of us. And a pretty good lead into Mother’s Day. 

 Happy Mother’s Day Mum xxx

Cycle 7 Day 4: Gawler Take #2

I have taken some time out and have come back to the Gawler Foundation for a week.  

It is a 5-day follow up and it’s run by the man himself, Ian Gawler. 

This time I’ve bought Mum with me. She is excited. I am nervous.

I tried to understand why last night over a vegan meal with Martina and Mum. 

I knew that my experience would be different this time round. Maybe it won’t have the impact of the first, not being by myself can change how you cope, interact. But talking it out, I realised I am a bit nervous about meeting Ian Gawler. I’ve got that feeling you get just before you meet your idol and you hope they meet your high expectations. I remember as a teenager seeing Courtney Love perform for the first time. I was obessed. (And don’t judge me it was the 90’s. She was cool. No really she was……Well if you don’t believe me I am sure Tam C will have my back). But it felt like that night… Waiting for her to take to the stage in her lace. Anticipation, nerves, excitement all wrapped into one feeling. 

Well I arrived, I met him and he didn’t disappoint. 

I am looking forward to listening to this man share his recipe to ‘wellness’ over the next few days hopefully absorbing some of his knowledge. 

I was moved by Ian’s story when he shared it with us. However, I felt more inspired and more uplifted hearing about news from one of the other youngish participants (who was on my first retreat) that his disease is no longer measurable. His prognosis was dire, yet he had other plans. I felt high. I had seen his determination and attitude first hand. It wasn’t defiant as such but just an inner confidence. Which is what I am searching for here this time round, that and delve into some more emotional healing because we all know I love that. 

So five days, here we go. With Mum in tow

And just so you know, a few like minded ppl mentioned they were a little star stuck by meeting Ian in the flesh. One even joked he was going to ask him to sign his meditation stool…. Made me laugh out loud!