Cycle 6 Day 20: The Guessing Competition 

Today is results day. 

This is how our morning conversation went…

Me: “I think the results will show stable disease, but that there is more fluid in my lung”. 

Alex: “I think it will show shrinkage, but the fluid in the heart need to be dealt with. Hey, we should run a guessing competition….”

Me: “What, like they have at school fetes. With how many jelly beans are in this jar?”

Alex: “Yeah”

What does the winner win? I thought. Cause I certainly can’t eat them.

Well, this is definately a different start to a scan day… But is more in line with my feelings about the scan itself. Although I have been just as apprehensive, there is a little more lightness to the results today. My attitude towards scans has shifted more to one of curiosity. More inquisitive. I even told my neighbour I was looking forward to it, to find out what’s going on. That’s never happened before. It feels less important, more informative. It’s less emotive, more knowledge building. That’s not to say I have not worried, been moody or grumpy (my family can attest to that)! But there has been a change of sorts in the way I view the scan. I’m still scared, but less so. 

So the results……the scan showed stable disease, less fluid in my lung and a stable amount of fluid in my heart. I will continue on chemo for the time being. 

My onc said that we were ‘winning’. I thought that is was a strange word for him to use but it reminded me of our morning convo. I wonder who won the guessing competition? I guess it doesn’t really matter. 


Cycle 6 Day 19: Thank you, Porridge 

I ventured outside for the first time in three days today. Not because of disease or treatment, but because of the weather. I knew cabin fever had set in when Alex started trying to rally support to go body boarding on the local golf course. It has rained so much that there was a slip-n-slide down one of the fairways. 

Weather alters my mood. I love a warm, blue-sky day. When I walk outside the air seems to engulf me, like I am getting a lovely hug. When it’s cold, windy and raining, I tend to brace. Plus I don’t have much of a winter coat at the moment so I feel the cold much more than usual. 

I try to love cold miserable days. Sometimes it’s hard to do when you live by the seaside. But I know it’s possible. I learnt to love these days when I lived in the UK. If you didn’t, you’d never leave the house. 

The UK is also a place where I learnt to love porridge. You could eat it all year round, and when 500g of fresh raspberries were a pound how could I resist. I have struggled with breakfast every since I can remember. Maybe because I wasn’t a morning person, but I would often skip the meal, having a warm, sugary, milky tea instead. Lunch wasn’t much better. If I was too busy in the office, I’d work through missing that meal too. Maybe snacking throughout the day on fruit or nuts, nothing substantial. By the time dinner rolled around I was ready to gnaw my arm off, so I would binge and hope it would sustain me for the following day. 

When I decided to have a baby I tried to correct my eating habits. Seeing I had learnt to love porridge I thought breakfast was a good place to start. It was an easy habit to create and maintain. Nowadays breakfast is easy, the rest of the day is still a bit of a battle. It shouldn’t be and I am not sure why I struggle to nourish myself throughout the day….. Self worth, being in control, laziness? With illness I know the benefits of eating regular well balanced meals. You’d think it would drive you and it does, but for me it takes effort. 

Anyway, so while Alex kept himself from going insane by regularly assessing the damage to the neighbourhood. My thoughts turned to food. Of an evening I would think of new ways to tart up my porridge the following morning. 

I normally soak my porridge (rolled oats, rolled quinoa and rolled millet) in water for a few hours before eating. Yesterday I brewed a chai tea to soak the grains in. Added a grated apple, some chia seeds and a few tbsp of LSA. Heated it over the stove with a little soy milk. Add some extra cinnamon, vanilla bean extract and flaxseed oil and voila interesting porridge breakfast! In another life I would add honey (actually I lie. I’d prob add brown sugar) and fresh strawberries or figs… Perfect for rainy days!! Mmmm now to work out what’s for lunch. 

I also have a scan tomorrow. Thinking about food has kept my mind from wandering too far. For that I thank you porridge! 

Cycle 6 Day 12: Singing Bowls and Labyrinth Facilitators 

Last night I went to a crystal singing bowl sound meditation. Try saying that three times quickly. 

It was held in one of the (many) yoga studios in my village and I was thinking of every excuse under the sun not to go. The chemo come down was in full force, so a pity party had begun in my head. It’s too cold, it’s raining, it’s right on dinner time, mum and dad are here, there’s something on tv I want to watch. Deep down, I knew it would be a good chance to let my body relax for an hour or so. I pushed the noise to the side and went. 

I arrived, found a yoga mat, lay down and got comfortable. The bowls were set up in the middle of the room. Some are frosted, some clear, all with tea candles inside. They were beautiful.

The women facilitating introduced herself. She doesn’t like to label herself but she is part medium, part labyrinth facilitator, part sacred land healer. A year or so ago I would have been in hysterics. What is a labyrinth facilitator?! But she was also a sound therapist and that’s why I am here. I love the sound of these bowls can create. It can be hypnotic and I need a bit of that at the moment. 

She rubs an oil on my arm and then beats a drum over me to connect to her guides. The meditation begins and the bowls begin to ‘sing’. 

I have to say I don’t recall too much after this. My body relaxed and I drifted away. Every now and then I’d wander back into the room when the pitch of the bowl pierced my ears and vibrated in my body. At times I felt the left side of my body tense and a pain would appear here or there. I tried to surrender and go back in. 

I was finally ‘woke’ by a rain water stick hovering above me. * Insert confused faced emoticon.* But it sounded authentic. And was strangely calming. 

I stood up in a daze. Although, it didn’t have the magical impact as say the harp meditation concert at Gawler, my body was thanking me. It was light and pain-free. It felt blissful. 

As I walked home, my head was clear. My thoughts were still. Then I smiled. My first thought had come to the front of my mind…..I think I might actually know what a labyrinth facilitator is. Funny how things change. 

Cycle 6 Day 10: Do you need to Project Manage your Healthcare? 

Alex says that my healthcare needs to be project managed.

It’s like managing a build. He said. I can’t lay the tiles until you paint the walls and if you don’t finish on schedule then where will I put the fridge which is being delivered at 5pm. (He’s an arborist not a builder by the way). 

Funny that he should describe it that way, given I am actually a project manager in ‘real life’. But it is an accurate description and just like any project, clear communication is key to the smooth running from start to finish.

There are a number of new specialists, allied health professionals and nurses involved in my care at the moment and when communication breakdowns, chaos can ensue.

Yesterday it was my job to project manage. I had made the appointments. I had received the phone calls. I had the list of questions to ask. I was prepared to hear the answers. 

We turned up to see the cardiologist and my appointment was not in his diary. The receptionist told me that she had heard that I was having chemo the day before and therefore would be too sick to come in for a visit. That’s why she had the cardiologist call yesterday, but not to worry because they had arranged to have me admitted in two weeks….. 

Umm I’m sorry. Booked in for what!?? What am I being admitted for?

I calmly told the receptionist I was not going to have heart surgery without a cardiologist laying eyes on me. Mmmm…. Let me see what I can do. She said. Within 20 minutes we were being ushered into see the specialist. We were finally able to have a healthy discussion without multiple parties being involved and the ‘he said, she said’ becoming a problem. 

He ran through the three options to manage the fluid surrounding my heart. I voiced my concerns about his preferred option and we were able to come to an agreement on how to move forward. He was happy and so was I. He had all the information, so did I. Clear and transparent communication. 

I work in big pharma and we work constantly on improving cross-functional communication. (I guess it would be similar in most other big corporations). Without it things start to fall apart. When you work in a silo you don’t have a complete picture. You make decisions on incomplete information. It can slow projects, cripple relationships and in my case, be detrimental to my health. 

I say all the time I want to be treated holistically. As a whole. I see how hard that can be when multiple specialties are involved. And in my job I only see the surface of hospital politics and the mechanics of the healthcare system. It is a beast. It takes on a life of its own. So how do you get your medical team to communication to each other? And communicate well. How do you ensure they have all the relevant information? How do you ensure they have your best interests in mind? How do you do that when you are not always feeling 100%?

I am still working that out. Taking ownership and being responsible for yourself is a good start. Having a great support team, who understand your wishes and needs, is a bonus. Using your project managment skills that you have acquired over your career ….Priceless? I feel like I am writing for a Mastercard ad. Crazy chemo brain has officially kicked in!  

Cycle 6 Day 9: Sweet, Sweet Potatoes

I see a cardiologist today to see if he can convince me to make a permanent ‘window’ in my heart sac to drain the fluid that seems to be accumulating in my pericardium. Turns out it is cancer, not the drug, that’s creating the fluid, so a bit like the fluid in my lung which was the orginal problem that alerted the medical world that something was not right in my body. I am leaning towards having a needle aspirate the fluid first to see what it is and if their are cancer cells in it which will then float about in my abdomen if I have the window. So I am ready for a healthy discussion with a new medico today. ‘Healthy discussion’ is how my family describe a conversation that to others sounds like an argument. So we’ll see. 

But today I don’t want to write about that. Today I am going to share my favourite meal of the moment…. I wonder if this is an avoidance tactic? Or denial? You know what, not everything is about cancer. And last night we dined on giant home grown sweet potatoes, so it is also fresh in my mind and why not share… 

Leah first made this dish when I returned from Gawler. She wanted to nail my new way of eating. She modified the recipe slightly and cooked it without oil and salt. It actually didn’t need it nor did I miss it. It tasted amazing. It was perfect (well almost..) I’ve made a few of my own tweaks also.

So here is the link to Mediterranean Sweet Potatoes (adapted from the minimalist bakers recipe)

 We add fresh mint to the herb garlic sauce and the salad plus I add a little sumac to the chickpeas after they are cooked. We don’t add salt to the dish and the sweet potatoes and chickpeas are not rubbed or coated with oil when they are cooked…. Tasty and complete meal. Just the right amount of carb-y goodness, tangy sauce, spiced crunch with fresh zingy salad. Love it. I could eat it all day long. 

Btw, the squid we caught yesterday evening are on tonight’s menu. Yum

Cycle 6 Day 8: Watertherapy and Chemotherapy 

I shared the ocean pool with a tv star today for my early morning swim, but I was more star-struck by the pod of 30 or so dolphins playing, surfing and feeding just of the beach. It was a beautiful start to a chemo day.

Chemo took longer than usual. I have to have extra tests done on my heart and talk to more ‘health professionals’ before they agree that I can start treatment. It gets a bit exhausting and today I was the one calming down Alex who was frustrated with the poor communication between the staff. We were able was to resolve all the issues when the main man, my oncologist turned up, and chemo went ahead. All our questions were answered by the time we left. 

As the sun was setting Alex took me squid fishing in my favourite spot. Paradise. 

It was a magical start and end to the day. All the medical stuff in between seems so irrelevant right now. I was planning on sharing the trials and tribulations of the last two weeks to give some extra context around yesterday’s post, however I think these two pictures will do. 

Cycle 6 Day 7: A Sign From Above

Xristo Anesti! Which for those who aren’t Greek means, Christ has Risen.

Yesterday was Greek Easter. There are two Easter’s in my life. Normal Easter and Greek Easter. As a kid it meant double the eggs, and double the food. Now it means that Alex and I don’t have to decide which family to spend the day with.

Whilst writing this post, the cynical part of my brain sprung to life and said it also means that technically Jesus was resurrected twice in his lifetime. Sometimes it is on the same day, sometimes it is weeks apart. Now that is truly ‘miraculous’. I think about trying to explain that to a child in a religious household. Luckily for my brother and I that was never an issue.

As you might have guessed, I did not grow up in a religious house. But Greek Easter is a special time of year. And since getting sick, it seems to hold an even greater significance. It was the only time of the year that we would go to church. And by ‘go to’ church, I mean we would stand outside on the street just before midnight with the other hundreds of Greek-Australians waiting for the holy flame to make its way out to us plebs. With our candles lit, our goal was to keep them burning till we got home and burn a smoke cross onto the front door frame. It was also a chance to see our extended family. We would stand near a particular set of traffic lights and random relatives would arrive. Dad would explain how we were related through his mother’s father’s sister, and then it was his chance to catch up on family gossip.

Now I just love the symbolism that Easter evokes. A time of re-birth. Shedding of the old and providing space for the new. A time for miracles. Last year, my hair had slowly started to grow back. It would be months before my first set back. So it was a time of deep and rapid growth for me. I remember diving into the water for the first with out a cap on, without a scarf. Dunking my head. Like they do in the Greek christenings. I felt re-born. I was re-entering the world. This year was a little different. And I won’t delve into the how’s and why’s (maybe I will explain in tomorrow’s post) but yesterday I decided to ask for a sign, message or to feel the presence of my grandmother. My Yaya. The one who I am named after and now share a disease with. During a reading I had done last year she came through loud and clear. I thought it was time again for a connection. And what better place to ask when all of her family are together.

I needed a lie down after lunch. Greek functions are noisy and I had to recharge my batteries before joining back in. My cousin quietly came and sat with me and we got chatting. I’m not sure how it came up and I don’t think it was me who initiated the conversation topic but we started talking about viral blog posts. It seemed to come out of left field. Not normally something we would talk about. It was unusual. He seemed to know a lot about the blogging world and it turns out his wife is a blogger-in-training. She has been researching what people are writing about, their styles, the platforms they use, and what are the most popular sites. He, as a very good husband, has been listening and learning also, as she embarks on a potentially new career path.

Most of my dad’s family don’t know about my blog. My cousin certainly didn’t. So I told him. We kept chatting and I picked his brain for information. Then something funny happened. I can’t recall exactly what he was saying (sorry Az if you’re reading this!) but things got a little blurry. I was hearing the words that were coming out of his mouth but for a moment I thought it wasn’t really him talking. Call me crazy or wishful thinking but I felt the words were coming directly from our grandmother. A women we both had never met. It was only for a spilt second. I had this overwhelming sense that I needed to keep writing and to write everyday if possible. Cue the Twightlight Zone theme music. Was this my message? I’m not sure, but the conversation was incredibly enlightening and I felt re-inspired! So it might be dribble, but I am going to try and write more regularly than I have been. It was the push that I needed. I guess it doesn’t matter where that push comes from.

Later in the day my cousin’s sister arrived and I was amazed at how much her daughter looked like her at the same age. I couldn’t get over it and made Vas’ girlfriend come and look at a set of photos on the wall of when we were kids. My aunt asked what we were looking for and she said if you want to see real look alike photos you have to come down here. She drag us further down the hallway into a section of the house I rarely go and showed us a set of photos that we looked at. As we moved through the series of photos we got to a set of old photos. Ones of my grandparents. I had seen many of these photos before, but one caught my eye. I’d never seen it. It was of my grandmother’s family. Her mother and brothers and sisters. I looked at it carefully. I noticed my great aunt who I had only met once or twice. I remarked how beautiful she was. My aunt said to me ‘Now she was beautiful’ pointing to my grandmother. Her mother. I felt a rush move through my body. She was right. I felt her there with me.

Ok so how many of you think I am crazy?! Haha. Maybe I am looking too hard for meaning, but I don’t care. It was my experience and that’s all that really matters. I think that was my message and is what I will take away from yesterday. That and I am surrounded by the love and support of my family.

I talked to Leah about putting my intentions out to the universe the night before. We giggled about it, but she supported me as always. Today on her morning work, she sent me a pic of what was lying on the footpath… waiting for her.   
Jesus! I wish my messages were that obvious. HAHAHA!