So with the help from some friends at the luxurious and magical Crown Towers in Melbourne, we created a beautiful, ‘memory maker’ for my Fairy, her junior Besty Troop and my Besty Troop. ‘The ultimate sleep over’, at the Crown Towers in the city.

We dressed up to feel the part. I spent a little more time drawing on my eyebrows so they didn’t resemble the Nike tick, wore a pair of wedges rather than my bed socks and twirled and tied my scarf so I looked more like a françaises fashionista, rather than the usual, pirate cross between a fortune teller look.

We were greeted at the entrance by a doorman, who chivalrously assisted the girls out of the car treating them like beautiful princesses. Of course, they loved every bit of it, and played the princess part perfectly.

Both girls had their cameras and by the time they had made it out of the car, across the plush welcome carpet and into the foyer they had nearly drained their batteries.  From the ‘Push Here’ sign on the revolving door button, to a group of ‘Chinese tourists standing looking up at the ceiling’. They had all photo opportunities covered.

We were ushered to the ‘Crystal Club’ like VIP’s where we were directed to check in. The girls were mesmerised by the surrounds, a huge Crystal chandelier hung in the centre of the foyer, like a gigantic shiny earing.

And just as the doors were opened to welcome us into this world of poshness, my ‘deadly wedge’ gave way and I fell to the ground, probably the large thud triggering a Tsunami in some poor little unsuspecting village in Thailand.  Fortunately I didn’t fall on my Besty Troop and crush her to death, as she tried with all heart to save me but it was useless. I was like Moto Moto, (Hippo from Madagascar) stuck like a wet mattress on the floor, with not enough strength to get myself up. Laughing seemed the only thing to do.!!

 

Finally, after that was all dealt with and we’d checked in, it was off to our room. Well the girls ran to their room, they were excited to be on the 27^th floor. And once they got in, there were……….

“I bags this bed”, “wow look at the bathroom, there’s a TV over the bath.

“And look Billi, there’s a telephone in the toilet.”

“Oh mum can we please order house service?”

“Don’t you mean Room Service?” ……

“Yes, yes, can we please order Room Service?”

But no time for Room Service. Our first stop was at Breezes, a gorgeous restaurant that looked over Melbourne, where we had a delicious lunch. I wasn’t quite used to all the walking, my head thought it could do everything, but my legs had a different idea. I felt like I had just spent three years riding a donkey across the Himalayas then all of a sudden we were off again.

We made our way to the gigantic swimming pool, the girls skipped ahead with excitement. My Besty Troop carried about 6 bags always checking on the girls ahead and on me behind. I did notice that since lunch, I struggled with my walking a bit more. I looked down and called Narelle to have a look…………….

Yep, the old ‘slip the shoes off under the restaurant table’ and blindly put them back on the wrong way, just like a 2 year old would.

Seriously, how can you cry about this…..when it’s a laugh a minute??

It was so good to hear the girls laughing, and watch them squeal with delight about this magical place. Glitz and glamour, buttons to push, doors opening for them, being posh for the day. I just loved being with my girl and felt like I was part of making her happy.

And in between the girls giggling and going off on their own, Narelle and I even had a little bit of time together, every moment is precious and we just talk.

So with the promise of a big bubble bath and some television, we were back in our room before we knew it. Whilst they fluffed and frothed amongst all the bubbles, they were out again discovering the telephone in the toilet which was unbelievable to their eyes. I must admit, I couldn’t think of anything worse than receiving a call from someone sitting on the toilet half way through their ‘occupation’, if you know what I mean. Why??

And just as they were about to dial room service from the ‘telephone toilet’, we announced it was off to Gold Class, for the movies. They were excited but I was still feeling the effects of riding a donkey for three years. Although it was beginning to feel more like a pigmy Shetland pony, and my little wobbly legs were just about on their last trot.

 

After the movie, we made our way for Sashimi and Sushi at  Koko for dinner. A restaurant with a Japanese pool and stone steps across it. My Fairy just wanted so badly to walk across, like the waitress’s.  But after we watched the strange man wringing his socks out because he’d just fallen in, she promptly changed her mind.

Had a lovely Japanese dinner with ‘my girl’, and it definately made our night when we saw the man wringing his socks out in the meditation pool after falling in.

After a big day of ‘memory making’, they were tired and their little eyes were looking a little ‘racoonish.’ The only thing getting them through dinner was the thought of room service.

I think ordering room service was their favourite thing about this whole magical night. Seems ironic, given this is exactly what happens at home when they want something, but they just call out instead of using a phone.

There was lots of conversation on the phone about, flavours, sizes, can you say that again, and “can I talk to your mummy.” But it all worked out in the end and two little buckets of ice-cream were safely and promptly delivered to our room, having two bites taken out, the girls seemed to be satisfied.

Well, that was until they found the broken plug in the bath that they insisted could be fixed by, “Room Service.”     

That night we cuddled with our girls in our King Size Beds, and gently drifted off to sleep with sweet memories of our day. I loved feeling Sienna’s toes with mine, making sure she wasn’t too far away. We held hands until we snuggled into our soft pillows and got into our favourite sleeping positions. There’s nothing like the warm feeling of falling asleep, listening to the hushed little breaths going in and out. 

The next day was the much anticipated buffet breakfast and then a morning walk.

MEMORY MAKING WITH THE BIG GIRLS

The day before results, I had ‘surprisingly and efficiently’, organised a thank you day for my beautiful troops who have been around me, protecting me, comforting me and looking after our precious little family for all this time.

I asked the troops to meet me at my house by, 10:45am, and although there was no hesitation to come, none of them knew what was in store. And I think they were a little nervous, especially when I playfully mentioned the “guru” and the “incense and bells” that had to be hung from their ears.

At 11:00am, the doorbell rang on queue, and one of the troops answered it, the courier asked for Rachel West as there was a rather large ‘on-line’ shopping delivery.

All the troops went to have a look and were relieved to not be greeted by a Guru and his brief case of coffee enemas. But a rather large, black stretch limousine, waiting to take us all on a ‘Memory Maker’.

My Dad was there to capture the moment on film, he’s so kind.

With the help from the beautiful lady, Margaret Ritter, who I met on the phone only back in 2009, when she donated to the Make Breast Cancer History Gala Evening. I had waited for so long to meet her, ‘face-to-face’, she kindly and generously offered to drive us to the winery, Domain Chandon in her amazing black and shiny stretch limousine. We talked and laughed and even had a little go on the karaoke.

 

Arriving at Domain Chandon  immediately became a wonderland of beauty, the grounds were so picturesque. We all enjoyed a beautiful lunch and looked out amongst the exquisite vineyard, we could have been anywhere in the world.

But we were together, seven troops and me. Who I love so much and feel incredibly lucky to be loved and cared for by such wonderful women. Sometimes, words just don’t come out the way you want them to, and just being together can say so much more.

What a wonderful day, and the feeling of being amongst such love is nothing you could ever imagine.

RESULTS – Progress Report

I had to think for a bit about what results I was getting that morning.  There was no major anxiety or anticipation before waiting to see my Health Stylist on results day, as we have come to get used to these appointments …. You hear the results… you talk about what it means….then you move on to the next step.

It was not a lot different that day either, although the results weren’t mind blowing.  The great changes that seemed to be happening in the Liver weren’t progressing as well and the “Japanese Golden Juice”, seemed to be slowing down. Not for a minute did I feel like giving up, I just thought… “Let’s crank it up!!”

We sat there and my Health Stylist looked at me with a very serious expression and said, “You have to start farting!” My mind was in a total swirl with what he just said. I have been told many things, and promised to do whatever it takes, but, “start farting?” It was more a matter of having the ability to stop!

But as I was still processing his comment in my mushy brain, I could hear other words such as, “getting strength back, exercising, start walking more, start fighting.”

Relieved to get that conversation cleared up, I went through my latest list of side effects, new and continuing.  I do find it difficult to say I feel unwell and mostly say I’m good when I feel like my head is about to blow off.

• Numb fingers and Hands
• Stiff neck and back
• My wobbly and tired legs, that at times can’t hold me up.
• Some strange headaches now and again that were waking me up in the night.
• Feeling nausea and a little disorientated more than usual.

My Health Stylist wrote me up for a brain scan and gave me a bonus week off chemo.

I gave my friend a hug and thanked him as usual. Always quietly thanking him on that last squeeze of my hug, for continuing to try and save me.

FIGHTING WITH A LITTLE HELP FROM MY FRIENDS

So off I  went up to the end of the street corner and back, down the local pier in St Kilda, all with a little help from my friends.

LOTS HAPPENING BEFORE START OF SCHOOL HOLIDAYS

So the last week before school holidays, and there were a few things going on, of course I would do anything not to miss anyone of them and tried my best to be there for my girl.

A brain scan was booked in for a few days after chemo. Because it was school holidays, Sienna came too. The three of us together going for a scan to see if mummy has brain cancer, what an outing. Is it right or wrong to bring your 7 year old to watch. She loved it, so interested in the buttons and the screens and all the computers. And seeing mummy’s brain, wow what other 7 year old gets to see that kind of stuff?

MEMORY MAKING WITH OUR LITTLE FAMILY

A few days later, it was an exciting evening, September 27^th!

We were taking Sienna to see Swan Lake the ballet at the Arts Centre. We dressed up in our fineries put a bit of lippy on (the girls only) and off we went to a night of Odette the princess, who was turned into a swan by an evil sorcerer’s curse.

I was still so wobbly on my feet, and felt quite nervous about walking around in crowds of people and up and down stairs. All I could focus on of was getting to our seats without me toppling over and potentially crushing someone. Or even worse, tripping over into some old Patron’s lap and being wedged in his lap, potentially dying of suffocation amongst his nether regions.

We finally made it to our seats which were great. Act I opened and our Fairy sat there with eyes as wide as saucers, the beautiful and mesmerising dancing and the spectacle of the costumes, captivated her every blink and breath.

I loved being there, I loved watching her loving being there. I loved listening to the music that my Mum and Dad would play and I would dance to.  My Dad would lift me into the air, as I would point my toes and reach for the stars. As my eyes misted up with happy memories, I realised I would have been the luckiest 18 year old around.

That night we slept with Swans in our dreams. Maybe not my Brave Man, I think he was happy to be ‘done and dusted’ with his ballet experience.

Day’s after we didn’t hear from my Health Stylist, he was to ring if there was anything wrong with my results. With no phone call we were happy that everything was ok and we carried on.

I loved our couple of weeks of ‘memory making’, it was lots of fun, a little tiring but worth every bit of it.

Arriving at our Johanna Haven………Being greeted by the prettiest rainbow

The last week of school holidays, we spent in our Johanna haven. Our poor Fairy developed a virus and was so sick all week. She cuddled up to me like a little Koala, and every night the Brave Man slept in her room to give her medication for her temperature when she would wake at 2am.

Even though she was so miserable and her temperature stayed on 39-40C degrees all week, I quietly loved being a proper mum to her. Cuddle when she needed one, ice-pole when she couldn’t have anything else, cold face washers to cool down her hot little face. And stroking her face when she couldn’t get to sleep, telling her, “Mummy’s here, I’ll make you better.”

Meanwhile I was getting more unsteady on my feet and feeling so progressively unwell and emotional. I just knew these feelings were  new and not normal. I decided not to say I was fine, and ring my Health Stylist first thing Monday morning to leave an urgent message.

That morning Sienna got ready for her first day back for the last term of school, and I sent my Health Stylist a message as soon as my Brave Man took her out the door to go to school.

We were getting the feeling that it was going to be another challenging week.

 

 

 

 

こんにちは

Konnichiwa

Hello

Well I have just had my 6th lot of the Japanese Golden Juice and it seems to be working slowly but surely. Blood tests are showing that the *Lolly Pop Markers (Tumour Markers), are coming down and the Liver function is slowly improving.  As some of you know, I am not a very keen user of the current medical terms and names for ‘everything cancer’, as they sound so doom and gloom. So I have developed my own ‘Medical Lexicon’, with more uplifting and more cheery names.

So it’s been another long break between my journal entries. The Japanese Golden Juice, (JGJ) has been relatively kind, giving me far less dramatic effects such as chronic nausea.  However, it packs a punch and tends to make me feel that I have drunk about 50 litres of sake, rubbed wasabi in my eyes and then stepped into a confusing scene from Sophia Coppola’s, Lost in Translation.  But that only tends to last for about a week, in time for my next Japanese Golden Juice infusion.

We cautiously feel happy about getting good blood results. I ask my Health Stylist if he is ecstatic but he feels that downgrading his feelings as “great” would be more appropriate. My dose of ‘JGJ’ was reduced by 20%, based on my first dose, slamming my body so hard that my good fighting cells couldn’t recover in time for my next round. So it was cancelled, I did try the tough angle, with my Health Stylist asking, “But what if I want to go ahead?” And in his ever so confident manner he said, “You’d probably bleed out and die.” I promptly dropped the little Miss Tuff act.

Over the weeks my blood tests have continued to show improvement. The levels of improvement have slowed down but are still heading in the right direction.

Whilst you haven’t heard from me, I have had a few ねばねばする (sticky) moments over the last seven weeks and some 素敵 (lovely) ones too.  I was feeling well enough to go to Sienna’s strings concert at her school assembly, I just love seeing her at school and she loves seeing her mum. It’s a double bonus for her if her Brave Dad can make it too. She had the biggest smile when she saw us and my heart melted.

Her little girlfriends who know me gave me a little wave. But the sweetest was one of the little boys who whispered to Sienna, “Gee, your Grandma looks really young.”   How sweet of him I thought, as I put my foot out in front of him as he walked passed.

It was my sister’s birthday on August 22^nd.  My fairy’s middle name, Megan,
is named after her. Even though it’s been a long time since she passed away in a car crash, I always try and tell Sienna lots about her beautiful Aunty. On her birthday we choose a star and say happy birthday and this year we wrote a little card and sent it off to the stars through my bedroom window.

 

My sticky moment was a short stay in hospital with ‘Mucositis’…. which I will re-name soon in my Medical Lexicon.

Anyway, it’s basically about 1,000 ulcers in your mouth, down your throat and your oesophagus. Feeling like you’ve been drinking a cocktail full of crushed glass, vegetable graters and then having a full pineapple with skin left on forced down your throat. Leaving you in so much pain that you suddenly are no longer able to eat. Oh and did I mention that it also feels like someone has got a wire toilet brush and scrubbed it up and down your neck.  Eventually as the pain peaks, you can no longer drink or talk either. Still, I thought to myself, “It will heal eventually and maybe there’s a bright side and I might lose a couple of my chins bringing the current chin tally down to 5.”

So I gargled my way, through 5 nights at Hotel Cabrini*, had about 5 litres of fluid and antibiotics, and anything else I couldn’t swallow the lovely nurses, would inject. Eventually I felt better and I was able to at least drink normally. It wasn’t long and I was packing my bag to come home along with the two lovely little extra chins, I now have thanks to all the fluid I’d had over the previous days. Chin Tally now 9.

Fortunately we found a drug available that I could use to prevent this happening again and it was only $10,000!  (Palafermin) What a steal let’s buy 3! I felt the best decision would be to put this money towards my ‘chinectomy’ I’m planning for after treatment.

My Besty Troop and I did a little scientific excperiment of our own, we thought if I sucked on an icy-pole while the Japanese Golden Juice was infused, would it help with detering the crushed glass cocktail ulcers like before! For a little colour and fun my BT bought some rainbow coloured icy-poles.

Ever since I haven’t had one ulcer!

Fatigue continues to wreak havoc. I have tried different tactics to stay awake, getting up early shower and get dressed and then help Sienna get ready for school. But then after they’ve gone I’ll just have a little sit on my bed, which turns into a lie down, which turns into a three hour slumber fest.

I have also tried the alarm clock just in case I keep sleeping and can’t wake myself up, and hate it that I’m so tired that I set the alarm for am instead of pm and it goes off at ¼ to one in the morning. I have even nodded off whilst my Brave Man has been mid conversation with me.

Even though I try and avoid going up and down the stairs because it uses so much energy and by the time I get to the top I feel like I’m gasping for my last breath.  I try and do some couch sitting for the afternoon, thinking this would keep me awake, but nothing will stop me, another 2 hour sleep, waking up with, ‘the crick of all cricks’….in my neck because of sleeping in a strange position.

And then the worst of all……

One morning my Brave Man had brought me up some cereal and freshly cut up orange to make sure I eat.  He’s even resorted to brining my lunch up to my bed in a little cooler-pack, again to make sure I am eating. I haven’t been interested in eating lately (which seems unbelievable since my girth is so wide I could quite literally kill a small child if I fell on it) and because I’m not hungry and my memory is poor, I forget if I’ve even eaten or not.

My appetite has been very average lately, just not excited to eat. My body is so dehydrated that I have been eating bags and bags of oranges every week and litres of yoghurt.

I’d like to be able to tell you that I’ve lost so much weight that now I’m back in my Hudson size 27 skinny jeans. But no, still in my comfy big girl pants trying to carry this pudding of a body around.

Anyway, back to………. “And then the worst of all…..”

I started with my cereal, I must have fallen off to sleep mid crunch. Well, do you know when you wake up sometimes with the feeling of “Ahhhh my mouth feels like the inside of a ‘cockie cage!’? Well after first realising that this was no ‘cockie cage’ I was feeling, after moving my feet, I was thankfully not dead, and this was not a wad of formaldehyde soaked medical gauze stuffed in my mouth. It was a spoonful of cereal that had been sitting there during, my 1 hour sleep-a-thon.  I’ll spare you the rest of the details. Let’s just say the cereal, Just Right marinated in your mouth for an hour is Just Wrong!

So I am living in self- imposed ‘lock down’, trying to avoid any germs at all. Just one little bug could be my downfall, so we are all very careful about kissing and touching.  My poor friends who visit, scrub their hands like OCD sufferers and check their children’s noses and throats and other any cranny, like they’re Indiana Jones searching for the Lost Treasure.

It feels uncomfortable asking my friends if they have any colds or anything I could catch. But I know only too well catching something means, hospital and chemo on hold. I do reassure them that anyone  is most welcome should they have head lice, as that is one thing I can’t catch.

So I continue to sleep a lot especially when I first have chemo, I’m definitely, ‘Sleeping Beauty’ without the Beauty.

One Sunday mid- morning not so long ago, I remember lying in bed for an hour as I opened and closed my eyes trying to wake up.  I listened to my Brave Man cleaning the house and my Fairy playing Bunny Hospital down stairs. She’d set up beds for each sick bunny, a CT scanner and X-ray room and even a bunny parents waiting room. She happily put on the different voices of the rabbits, diagnosing them with their various illnesses’ ranging from, a broken wrist, a puffed up tummy, twisted ankle and bunny cancer.

I just wished myself to be down there with them and was trying hard not to go back to sleep. After a shower and some fresh clothes. I found myself in the animal hospital with Dr West, who was looking after my baby rabbit daughter, Miserabella. As she took her off for an x-ray and a scan, I watched her playing pretend, I realised how my life on the ‘medical travelator’ is also her life on the ‘medical travelator.’  And just to tell you, Miserabella is totally fine, just a little tummy gas but she’s fine.

We have still been going on our trips to our little haven along the Great Ocean Road, my Brave Man and my Fairy discovering so many things on their walks.

 

Discovering our Johanna neighbours

 The fairy and her Dad went off to find some firewood to stock up for winter and they found more than they expected. In amongst the bush, they found a big Koala family. In one gum tree alone, they counted nine Koala’s.

It was the Brave man’s birthday. I love to celebrate anything and everything, Birthday’s and Christmas rate high with me.  I always have the rule that nothing can ever be labelled ‘over the top’ on these two days of the year. The more tinsel the better and the more presents you can re-gift, the better too!

Anyway, as I am momentarily ‘less mobile’, ‘all things party’ just wasn’t going to happen. And the mere thought of blowing up a balloon makes me instantly visualise an angry Scotsman using my lungs as bag pipes.

But the Brave Man was happy with his birthday dinner of lamb shanks (his favourite), a lemon tart birthday cake, also his favourite, and his present from his girls, a kit to make a Billy Cart. My fairy and her little troop made it together with the Brave Man overseeing,  on a trip to Johanna. So much fun!

 

 

We love him so much us girls, as my Fairy say’s…. “Daddy is the best chuck out the rest.”

So the next ‘memory maker’ is taking my Fairy on a magical girly adventure. We are going to Crown Towers for a night, a 5 star plush Hotel in the City. With promises of ordering ice-cream from room service, a breakfast buffet, big bubble baths while watching TV, and Mocktails before dinner.  And as part of the ‘memory maker’ my Besty Troop is coming along with her daughter and Sienna’s Besty Troop. One more sleep and she has had her suitcase packed about a week ago.

This week I go for the ‘big scan’ and the results will hopefully tell us what the ‘JGJ’ Japanese Golden Juice, has been doing.

My fairy has been asking more questions, “why is it taking so long for you to get better?” she overheard someone say there’s no cure for cancer, she asked, “If there’s no cure for cancer does that mean that there is no cure for you mummy?” As always, I say to my girl, “we are all trying to get me better, I’m trying so hard, because all I want to do is play with you and Daddy again!”

I read a little snippet of information the other day, according to both UN and WHO (not the magazine) estimates, Japan has the second highest life expectancy of any country in the world. I hope this applies to me now that I’m taking their golden juice.

See you for now, and I’ll be sure to put the alarm clock on next time so I can tell you about my results and a few other things I have been up to.

 

The majority of the beautiful photos are taken by my amazing and talented husband.

The Brave Man.

As I rubbed my hand cream onto my face, I came to realise that I had officially spent seven season’s in bed. If it wasn’t for the pretty trees I could see out of my bedroom window, I probably wouldn’t even know what season I was in. At the moment they are bare and twiggy and I know it’s winter.  Oh and I also realised that I should look properly at labels to avoid rubbing hand cream into my face.

 

So I know it’s been a while since I have written to you, my last entry was rather gloomy to say the least. Thank you for your notes of concern, I’m glad that I now have a clearer head to be able to write again. It’s certainly been a challenge with the latest chemotherapy hitting hard, the Brave Man working longer hours and my Fairy being sick and miserable for a few days. None the less, things have progressed, not in terms of my health but my overall way of thinking.  The last diagnosis no doubt brought us a heavier heart, but also brought us to the level of acceptance that has given us the freedom to lose the heavy burden of fear. We now talk about the, “What If” out loud, and have taken charge of what we can control. Whenever it is, we will still have our happy ending, it’s just the timing that might not be our choice.

 

Last you heard that my liver intruders were back. Two days later, I started on a new cycle of health nectar known as FEC. One I have been on a couple of times before that had successfully obliterated the last lot of intruders. Since March 24th, I’ve  had three cycles of this treatment over 9 weeks and spent two nights in hospital each time.

 

I have now developed, ‘chemoseniorsitis Alzheimer’s’* and found myself repeating conversations, forgetting conversations, and making up conversations I never had. The local DHL courier would deliver online shopping to the front door that I had no recollection of ordering. Friends would visit and 5 minutes after they would leave, I would sit on my bed wondering why I hadn’t seen them in such a long while.

 

And one minute I’d be writing in Sienna’s “Growing Up Mummy”, book and the next,  my head would slowly lower. I’d nod off like one of the old folks sitting side by side in the, ‘main social and activites room’ at their convalescent home.  Drifting on and off under the blinding warmth of the fluroscent lights. Not to mention the other perils of chemo. The squeaks and creaks that spontaneously pop out when I get out of a chair, or pick up something I’ve dropped. Bringing me back to times my Grandma would walk around the kitchen, being closely followed by a harmonic tune of flatulence as she whipped up a fresh batch of scones.

That’s it! I was going through, early onset ‘seniorsitis’*, and I’m only 42!

 

We spent the first few weeks after I started my new round of chemo consumed by our emotions about the prospect of not growing old together.

The Brave Man and I would just look at each other and cry as reality set in that my lovely life might come to an end. We weren’t giving up, we were just having a hard dose of reality. I was very sick and lifting my head off my pillow was an effort. My sickly liver was giving me trouble and for the first time, I felt the effects of cancer in the form of pain. My poor Brave Man would look at me helplessly, wishing he could swap places, because that’s the only thing he could think of, to make things better. My little Fairy, started to bring her bunny rabbit to school for comfort and there were more tears at night when she went to bed.

Our lovely Johanna farmhouse is our sanctury and we would drive there like the wind to get out of Melbourne.  Spending time planting forget-me-nots around the ‘special tree’. The ‘special tree’ I see from my Johanna bedroom window, it’s big and beautiful and when the different lights catch it during the day, it tells a different story each time. I have imagined in my mind that if I wasn’t here, my Fairy and Brave Man could have the ‘special tree’ as the place to go and visit, speak to me through the trees, the forget-me-nots and the cool breeze.

 

“What If,” plans were set in place. I filled my, “what If” journal with my thoughts and wishes, from songs I wanted played to the unicorn and carousel I suggested to be arranged for my Fairy and her friends at the ‘after party’.

 

My beautiful Besty Troops spent a day at my place sorting through letters, photos and all the sentimental paraphernalia that I had kept over my life. Right down to the Caulfield Cup golden entry ticket I had the day, I met the Brave Man.  There were lots of laughs, honest conversations and a few tears. But mainly a lot of love and caring.

I continued with my ‘Growing Up’ story book that I was making for Sienna. Some nights when my Fairy was supposed to be tucked up in bed, I would hear her little pitter pattering footsteps upstairs, tiptoeing into our room and checking out what I had done in her book that day. She was always filled with anticipation of when I would finally have this finished. She would ask me now and again, “what do you write when you finish?” and I always reply with, “to be continued.”

My days have been all about preparing for the, “what if” and “just in case”, but I’m not sad at all. It just makes me feel good about the lovely life I’ve had so far.

I have been doing what I do best in these situations and in between naps and nod offs, I do a smidge of online shopping. And before I knew it, I had arranged for my Fairy’s birthday presents for the next eleven years, bought the classic seventies,  ‘Where did I come from?” book, so she could understand about the facts of life when she was ready, ballet shoes for the next 2 years, along with pure cotton nighties to last her until she’s 10. Everything was coming together for the, “Just in Case”.

In the meantime, a memory box was prepared, letters have been written to her when she becomes a teenager, gets married, and has a baby. Of course none of these moments will be happening in quick succession.

All the while I think to myself, how lucky I am to be given the opportunity to have the time to do all this.

 

Three weeks ago, I was booked in for my scan. This time I wasn’t so anxious. Whilst accepting what may lay ahead was hard, it has given us more peace than we had imagined. We knew that whatever we were told, we would accept and carry on, always with the hope to prevail.

My Health Stylist told us that the chemo hadn’t worked. Although my liver lollypops* hadn’t got any worse, the word, “stabilized” was used and we would take that as a positive.

We had the……, “but wait there’s more”, convo with my Health Stylist where he told us about a new concoction that had been developed in Japan.  Not wanting to be ungracious or seen as lacking compassion, two words came to mind, “Nuclear Meltdown”.  But they were soon forgotten when I remembered that this was about my life and I would do anything that my Health Stylist suggested I do.

So this new chemo, known as eribulin, has been specifically developed for patients with breast cancer that has spread and have already had at least two treatments for this disease.

Even though eribulin has just finished trials overseas and had been approved by US and Canadian health authorities, Australia has not been so quick to approve. This means we have to pay for each treatment. Note to self…. “Cut down on the online shopping!”

But my clever Health Stylist has done some wheeling and dealing with the Australian Government and has been able to reduce the cost to us quite significantly.

So no sooner had my Healthy Stylist pressed the, “process button” on my most significant ‘online shopping order’ of all time, the ‘golden juice’ was on its way!  And we made the most of my feeling better time, whilst I was having a break from chemo.

So here we are, July 18th, back at our haven at Johanna Beach, our first lot of the new chemo done, five days ago. 

 

Looking up and having faith that we will prevail with this new lot of hope.

One hundred kisses from Sienna this morning and an, ‘over squishing boozzie squeeze’ from me, before she left for school.  I quickly study her beautiful face, with pretty blue eyes that dance when she’s happy.  The tiny caramel freckles sprinkled over her nose, the perfect bud lips, and the little gap between her teeth when she smiles. I close my eyes so that I can seal this image in my mind for later when I need to think of something to calm my busy mind and crazy beating heart.

Just to intensify the Braveman’s jetlag and anxiety for me, he decided to keep his morning appointment with his dentist.  After an unrelenting two and a half years of caring for us girls, there was time for a little maintenance of his own. His visit revealed a badly cracked tooth which was, in the kindest and gentlest possible way…. Extracted, no pulled, no yanked, no…. SEVERED!!!!  From his jaw bone, root and all.

Being the bravest of brave, he did not complain, he internalised it and ‘battled on’ as he does.

The familiarity of the day’s proceedings was quite uninteresting as we were common travellers down this road.

Drinking the pre- scan cocktail was as awful as usual and without fail always brings me back to my teenage experience with my friend’s Dad’s Blackberry Nip.  Never a good drink to start with when, ‘trying alcohol for the first time’.

I stared at my unfamiliar face in the mirror and missed the old me a lot. The make-up came out and I did my best to bring back some character to a hairless, pale canvas with colourless eyes. I laughed at myself trying to draw on eyebrows, after a 45 minute effort of dusting, shaping, darkening and lightening, I had created a look of being poised to ask an important question.

Greeted by the familiar faces of the sweet girls in Radiology, just a smile would suffice to check in. It wasn’t long until Neil bounced through the doors to come and get me. Normally we’d have polite banter as we walked along, about “the wait wasn’t long today”, or “Is it still raining outside?” But today I caught him off guard by bringing the Braveman into the actual ‘Scanatarium’* room.  (*made up). Noel took one look at my face and wasn’t about to mess with the ‘eyebrow’!   

My Braveman held my hand as Neville tightened the tourniquet around my arm searching for one of my elusive veins. I quietened myself down and Neil slid the needle into an unsuspecting vein.

I close my eyes and I see the tiny caramel freckles sprinkled on her nose.

The ‘Scanatron’ (sounds much more dramatic), started whirring and Noel and the Braveman went behind the safety screen. The Braveman got to watch from the ‘Major Scantrol Panel’.

‘Her dancing eyes.’  

The first scan was done and now for the actual contrast injection, this happens automatically, but Neil will stand over me whilst it goes through to watch out for any complications.

‘The gap in her teeth when she smiles.’

I feel the fluid going in and reaching parts of my body as they become hot and tingly. The feeling of wetting my pants is not the most favourite part, but I always know it means it’s nearly finished.

‘Her rosebud lips.’

And then it happened, a huge wave of nausea. My Fairy’s lovely image burst like a bubble in the air and I was instantly brought back into the present. I called out to, “Neil, Neville and Noel…” clearly I wasn’t on my game with name recollection. He told me to hang-on, I put my hand over my mouth.

I couldn’t hang on, but I will spare you the rest of the details. It wasn’t until later that I would understand why they you ask you not to eat before a scan.

The Braveman and I picked our Fairy up from school….. well the Braveman got her and I waited in the car. She ran like the wind when she saw me waiting for her in the front seat. I love her funny little ducky run, her rosy pink cheeks from the cold air, clutching her beret so it doesn’t fly off as she runs. It’s those visions that get you through.

My parent troops came around and took care of their Grandfairy so we could see my Health Stylist. She loves them so much as they do her. Another thing that gets you through.

The Pretty Leaves Fall

I always position myself in the waiting room so that I can watch the reflection of my Health Stylist as he comes out of his office to call me.

Sitting in front of him staring at his lovely face, he explains that I have the digestive system of an 80 year old and I have a case of, what I politely like to refer as, ‘Colonic Idle Progression*’.

“But there’s tumours in your liver again and they are affecting your liver function.” I stared at his eyes and I saw tears….. and they weren’t mine. They were from a man, now a friend, who’s been trying to save my life for so many years. I just felt guttered for him. It had come back so quickly, we had barely had a break.

We sat there in silence for what seemed like minutes but was probably only a few seconds. I looked back at the Braveman’s  forlorn little face sitting there in shock. I felt for his hand, the same hand that held mine, six years before when we were first told I had breast cancer.  The same hand that’s been holding mine ever since, I just don’t want to ever let go.

The only thing I could think of saying to my other Gary was, “I know what I want to ask, but I don’t want to know the answer.”

I just don’t think I could ever hear ‘those words’ that I have been dreading for so long. Is it important to know time, or is it what you do with your time?

Still, there’s options and I was booked in for a change of chemo on Thursday, it’s very heavy duty but we have to hope it’s going to storm through my body, blasting these uninvited and most inconvenient intruders.

That night my heart ached so hard as I could feel it break a little  more. Not for me, but for what this will do to my Braveman and my Fairy. I was so sorry, so very sorry.

I reflected on the lovely quote I was given a few weeks before by a woman I greatly admire, Lyn Swinburne.

“Our lives are like precious stones mined from the ground. Whether we let life’s experiences crush us, or polish us, depends on what we’re made of.”  Byllye Avery

April 23

So the Braveman went back to work and my fairy and I planned our week together.  Which involved pajama mornings, play dates, parks, breakfasts out, book shops and the movies, all the fun things we like doing together.  I just didn’t want to miss an opportunity with her whilst I was feeling OK.

I still have a lot of help from parents, friends and our lovely ukulele playing Wendy Woo Woo, who helps out most nights picking Sienna up from School, taking her to activities and organising dinners and lunches.

I feel sad not doing the mum things that I want to do, but Wendy is sweeter than apple pie and Sienna really loves her.

Wendy brings her pretty green ukulele and serenades us with her husky bluesy tones as she goes about doing chores and caring for our girl.

I reminisced about my own childhood memories as I watched my fairy and her sweet friends create their own childhood memories, by excitedly setting up a shop at the front of our home they called, Meekaluka Cafe. With chocolate chip cookies, little pink cakes and the tastiest home made sour lemon drink, they were open for business. The positions of order taker, server and cashier were assigned and it wasn’t long until they had sold out (all to relatives that ‘happened’ to be walking by) and the Meekaluka Cafe was promptly closed for the day after much success.

I made it to her swimming, gymnastic and tennis lessons and as I watched her freestyle to the end of the pool, climb high up the gym rope to the roof and slice the ball over the net like a pro, I couldn’t believe how far she had come in the 7 months since I was able to get there last. I also realised why the poor kid was so utterly exhausted at the end of each week. But she was so happy that I was there and so proud to show me what she could do.

She sat up straight in class when I went to hear reading, one eye on the teacher and the other on me. These treats to go and see her, really made me realise how much my little girl had grown up and how much I have missed seeing her at school, I was happy and sad at the same time.

We set off to the movies one morning, ‘cancer guilt’ kicked in so I made sure, I bought her the biggest popcorn, choc-top and water I could buy. I just don’t want her to forget these moments with her mum! Hopefully she’ll remember it for the fun and not for the massive vomit she’ll have later because of all the garbage I bought her to eat.

The movie was true Dr Zeus style entertainment for Sienna, and I loved the 3D aspect, where you could manage a ‘sneaky snooze’ under those big black Grandma glasses. Half way through the movie, my 3D slumber was interrupted by even louder bells, whistles and sirens and then a serious sounding man’s voice began to announce, “evacuate evacuate”!

With my 3D glasses still on, I grabbed my fairy’s hand which was still clenched with popcorn and we made our way out of the cinema. We came across a tsunami of white, grey and purple fluffy heads making their way out of another cinema, the scene looked even weirder through the lenses of my 3D glasses.

Rather than hang around, we quickly grabbed our ‘replacement tickets’ for next time and left the building. My fairy leaving a rather long trail of popcorn behind her as it bounced off her clothes as we made it back to the car.

We never did find out what happened that day.

New ballet shoes were bought, a haircut was had and the most favourite bookshop was meandered through. We walked down the street holding hands, doing the ‘Three Squeeze Hand Secret’ that we know means, “I Love You.”

My Braveman told us that he had to fly out to New York for meetings for a week. My little pain in my stomach that had been niggling started to niggle a little bit more. I told him about the pain and we agreed that I would see Dr Deb before he left. Trying to avoid any scans or trips back on the medical travelator, I helped Dr Deb decide that I had a bowel infection and felt happy to tell my Braveman about this diagnosis. However she still insisted that I would have a blood test and ultrasound.

After having a lovely celebratory lunch for my mum’s 70^th birthday, my Braveman flew out that night for New York. We were sad that he had to go because everything seems so much safer and protected when he’s with us.

 

My fairy was even more sad than usual that he had left, but a big glass of ice-cream and a sleepover with mummy in the big bed, seemed to fix things.

We held hands all night under the covers.

She was going back to school, my heart feels sad that she has to go back and I pine for her all day. But to get off to a fun start we went out for breakfast before school. Something my own mum would do for us as a special treat once in a while. See….. memories, creating memories.

Sienna had her ‘show and share’ at school and the topic was, “What would you like to be when you grow up”? It would be no surprise that she would have her heart set on, Ballerina. Performing grand jetes and pretty pirouettes around the house day and night, it would only be natural.

But I was touched and saddened at the same time when she said, she wanted to be a Doctor like Gary Richardson (My Health Stylist). She explained that she wanted to help people to get better. “Especially you mummy, so if you get to 80 years old and it comes back, I can look after you and make you better.”

That feeling of proudness and yet pain of her sweet innocence in this whole thing, filled my tummy with an ache. I hugged her so tight, wanting so much to tell her that everything was going to be ok, but was suddenly pushed away because I was apparently, “over squishing”. Yes my current, ‘over ample boozzie area’, can be quite suffocating for small people when given an over enthusiastic hug.

By Tuesday my niggling pain wasn’t getting better and I was terribly tired, probably more due to the fact that the Braveman’s helpful hands were not around and I was following around a kid with a bigger appointment schedule than the Prime Minister of bloody Australia. Offers always came from the kind Mum’s from school, who would take Sienna in the morning and drop her home when I couldn’t.

Secret messages and phone calls were being exchanged between New York and Melbourne with concerned Besty Troops and a worried Braveman.

Instructions were given from New York and I relented to an ultrasound and blood test, and to be sure I went, one of my Besty Troops took me, not only to my appointment, but she actually came into the examination room too. It’s just that I liked doing the, ‘normal of normal’, and it had been such a quick time between ‘normals’ before another scan was being ordered. I just wanted more ‘normal time’.

The news came back from Dr Deb that there didn’t seem to be anything unusual, but she had contacted my Health Stylist in any case to let him know.  Three more sleeps until the Braveman came home and his girls were really missing him. I had a message at home that night, that Professor Gary Richardson (My Health Stylist) wanted me to have a further cat scan and see him early next week.

My heart broke a little inside. My fairy and I ate ice-cream in bed again and watched a movie she chose, and declared me to be the “best mum in the whole world”! We fell asleep that night, whilst I was telling her most favourite stories about when I was little.

On the Saturday, my beautiful Besty Troops came over with lunch and laughter. We spent the afternoon talking about life and reminiscing about the fun we had in the ‘old days’. I had much delight in finding some old photos that we chuckled at as we saw the 80’s hairstyles, very high jeans and cheap gold rimmed glasses, that we all thought looked simply fabulous.

We talked about the challenges in life, parent’s passing, children growing up and worried husbands. But I didn’t want to talk about cancer, I just loved hearing their problems, the more they told me, the better I felt. A break from the cancer conundrum was good for the mind. I miss talking to my friends and being the ‘solver’ and not the ‘solvee’.

Home Coming
April 30^th

Finally it was home coming time. My fairy was so excited that her Dad was coming home, she ate her dinner at the speed of light, had the quickest shower in all time history and insisted on doing her own hair so she looked shiny and healthy for when her ‘Dad Hero’ walked through the door.  She sat patiently in the front room for nearly an hour watching the lights from cars turning into the street, hoping the next one would be her Dad. I love her, love for him.

I sat there too, watching her, watching for him. Every so often, my mind would wander to the ‘what if’ of the next day’s scan.  Please let it be ok.

May 5^th 2002

Autumn has set in and I get lost in the beautiful colours of the leaves outside my bedroom window, as they turn from luminous greens, to rich and warm orange and auburn’s. It’s been a month since my last round of chemo, and I have definitely felt better for the break.

But I’m back on the medical travelator now, having just finished my first cycle of a new regime of chemotherapy a couple of days ago.

I had a lovely month off and did as much adventuring as my body would allow me. The simplest things with my Fairy would make our days and we delighted in enjoying each other’s company.

Even though I had high hopes of walking back into oncology to see the ‘Gara Angelis’ the other day with a cute mod crop of new hair growth. My hopes were quickly dashed when I realised, the only few little hairs growing back, were all on the end of my chin. Cancer is mean! And if I saw it close up, I’d poke its eye out!

So because it’s been a while since I’ve written, I wanted to split my entry into three parts..….. that I have called Autumn Tales.

So much to share with you!

Back to 4 weeks ago…..

Easter April 5th

 

It couldn’t have been a better break from the ‘hard juice’. My fairy was on school holidays, the Brave Man took time off work and we had one of the most memorable Easter’s we’ve had in a long time.

So as soon as we could, we packed the car and headed down to our ‘beautiful haven’ near the beach. First stopping off at Lily Pond, my most favourite shop in the world. And because it’s owned by the Braveman’s older brother and his wife, makes it even extra special.

 

 

We had our Fairy’s best friend Billi with us and wanted to show the girls the gorgeous Easter window display. There were bunnies galore and my Fairy was in her element.

We wandered through the whimsical emporium of old french ribbon and freshly ironed antique linen tablecloths and ran our fingers along the old French cloche’s bell jars, that were once used to protect the vegetables from the chrisp French country air. As we admired the beautiful curved table legs that belonged to an old writing desk that they had found in the south of France, we found ourselves back at the front of the shop again, only wanting to go back for more wandering to lose ourselves in the ‘frenchness‘ of it all.

The music of French singer Serge Gainsborough, could be heard in the background and as the girls played behind the counter with Sienna’s cousin Tamsin with ribbons and buttons, making pretties and wrapping French mints. We savoured our ‘welcoming macaroons’ whilst my shopping delights were wrapped by my quiet niece Rosanna. With a beautiful old French cheeseboard, my first ever feather duster, (can never be too late to own a feather duster) along with reels of ribbon I couldn’t resist, amongst other bibs and bobs.

We bid our au revoirs and continued our journey.

 

 

 

 

 

Arriving at the Farmhouse

Our Besty Troops came to the farm house for Easter, Dan, Narelle and their three girls, Billi, Alice and Dusty. Also some new friends who were visiting from Sweden. We had met them through our Besty Troops when we travelled to Sweden this time last year.

It was so lovely to share our house in amongst our magical setting with ‘Swedish’ Mike, Maria, their little boy Charlie and baby Daisy. Although I did think that the 6 hour drive it took them to get their, would almost be like driving from Stockholm to Italy. Still we were humbled that they made the time to come and see us and we loved their company.

For a while, amongst the laughter and frevovility I forgot I was sick. In fact, if it wasn’t for my big white beaming bald head that could be seen from Mars, I think we might have all forgotten for a moment.

The time together was very special and I appreciated every moment. From the culinary delights that Dan would produce in the kitchen, even using the fresh herbs from our organic veggie patch, we were all spoilt from morning until night with his tantalising cooking.

Even the kids would be involved in the cooking, making deliscious fish tacos on Good Friday.

During the day, they would all head off adventuring and I would take the opportunity for a rest at home. I wanted to be with them all the time, but knew my tired body wouldn’t get that far, so I just saved up for the afternoon family board and card games.

All A bit of a shock

My Braveman enjoyed this special time too, discovering special beer brews from around the region, to share with Dan and ‘Swedish’ Mike.

One early chilly morning my Braveman and Dan decided to head out for some ‘man time’. I love the Braveman doing this, it’s so important for his headspace to have ‘man time’. So they packed the fishing rods, tackle and stinky bait and set off at 5am to find a good place to fish as they watched the sunrise.

Four hours later they came back, cold, no fish, but big stories to tell.

Apart from confessing their guilt for driving through a campsite in their loud four wheel drive at 5 am, no doubt waking the poor campers from their slumber. (Note to self….just reconfirming that this is the very reason I don’t camp!)

They set off to find the ‘mouth of the river’.  “Apparently”, the best place for catching the fish, also a great place to get your car bogged after heavy rain. And it was no time before they found themselves in a big bad bastard boggy situation.

Of course there was the thought of asking the campers down the road for some help, but given their early wake up call thanks to the ‘city bush bashers’, they thought better of it.

I can only imagine what went on in that car and it wouldn’t have been singing ‘Kum Ba Yah’ and asking the Lord for some help. Instead, a lot of swearing, laughing, swearing, panicking and even a little perspiration in the ‘man pit area’. My Braveman, (bless his little cotton socks), put his ‘practical pants on’ and read the instruction book and apart from learning how to change the clock and what some of the dashboard symbols meant, it was as about as helpful as driving through a bunch of sleeping campers at 5 in the morning.

But then they came up with the clever idea of placing the door mats under the wheels to get some ‘traction in the action’ and off they went.

No doubt there would have been a lot of relief, laughing and chest beating as they sped back to home.

The morning was producing a beautiful sunrise and the Braveman couldn’t resist stopping to take a photo. Of course Dan being a perfectionist had to find the best spot for scenery and sunrise, everything had to be aligned and in order. It sounded all very ‘roMANtic.’

Finally the perfect spot! The Braveman got out the ‘big kahoona’ lens and as Dan was taking in the serenity while his brave mate steadied himself on the fence to take the perfect shot. A piercing yelp echoed out over the valley. Not only did the Braveman find the most perfect shot, he would also feel an instant shot of his own, as 7,000 volts were blasted up his ‘rectum intestinum’ and out through his ear canals as his elbows lent on the electric fence.

Mmmmm I bet he was thinking about how happy he was to get up at 4:45am that morning!

The kidlets got up early on Easter Sunday, (no surprises there) Full of an excited buzz as they put on their layers of clothes and warm jackets ready to go out into the chilly air, ready for the Easter Egg Hunt.

They were met at the door by some ‘busy bunny paw prints’ left from the night before, and a half munched carrot. Shame the handy-work wasn’t really noticed as they excitedly barrelled through the door to go hunting.

With a ready, set,  go, they were off like a bunch of crazies at an annual stocktake sale. Darting from one tree to another, looking under leaves in branches and amongst the dew soaked grass. As soon as one would call, “I’ve found one!”, the other’s would follow. Until about 350 multi coloured wrapped chocolate Easter eggs were found.

Yes, there was a little miscommunication with egg quantities (mainly mine) and each child found about 70 each.

See, cancer is mean, it makes you feel all guilty that your child isn’t happy enough so you have to buy things in bulk, tell her a thousand times a day that she’s loved and she’s so clever and kind and try so hard not to get cross with her when you’ve asked for the 43^rd time to go and brush her teeth. Arghhhh, I hate cancer guilt!

 

That morning, many coloured eggs were counted, hot cross buns were eaten as well as, a lot of CHOCOLATE!

I desperately wanted Charlie who was only 6, to see some kind of Australian wildlife, whilst visiting. But these timid animals are shy, so there wasn’t going to be a guarantee that they would come out to meet our little Swedish visitor. So I had a backup plan just in case he didn’t get to see any. … BIG KEV! The giant blow up Kangaroo!

 

When Charlie went off bush walking with his mum and dad, Big Kev finally made his bush debut! The girls sought much delight in hiding him in amongst the trees to surprise Charlie when he got back.

Big Kev was ‘king of the gum trees’, he looked so splendid sitting up there for all of the 3 seconds until he blew over. But Charlie was happy, Kev made a very good punching buddy for him. I think he was a bit over being there amongst all the giggly girls and needed some ‘rough and tumble time’, poor Kev.

 

The mornings were fun and all the girls, Sienna, Alice, Billi and Dusty would jump in the bed for cuddles, I never feel sad anymore about my dream of having lots of kidlets when these girls are around. They’re eternally full of love and cuddles for us.

We only had our friends for a few days before they had to go home. As we said our good-byes it started sprinkling with rain, and by the time they had driven to the start of Wait-A-While Road, a beautiful rainbow appeared and wished them “good journey.”

The next few days it was just the three of us, and although we missed the happy noise in the house, I got a little bit more rest which was what I needed.

With my extra energy, I managed to do more things. During the day, my fairy and I played ‘hide and seek’ amongst the gum trees, ‘frog hunting’ around the dam and finally the three of us put our lovely letter box on the front of our house that our Besty Troops had made for us. We went adventuring around the old tracks and spotted wild deer frolicking down a farmer’s track, caught up with the local wallabies and enjoyed the never disappointing view of  Cape Otway. At night, I made pie for Gary with a love heart and our initials on the top, just like when we first met and were falling in love. Cooked ‘homey’ dinners for us all and taught my fairy how to cook chicken pie.

It was nice to look after and nurture my little family after such a long time.

A few days later, my lovely parents came and it was terrific to see my mum looking and feeling much better. She’s come along way, and it was great to receive good results with her recent scans.

My kind gentle Dad has enrolled in a 4 week course at University to learn about Astronomy. He wanted to do something nice for his Grand daughters who he adores so much, so he decided to learn about the stars and planets, buy a telescope and teach his granddaughters about what goes on in the skies above. I couldn’t think of a nicer thing a Grandfather could do for his grand kids.

After spending a glorious ten days on the farm, we were full of love and happy as larks.

But a niggling secret pain in my stomach would get worse and took a little shine away from my happiness. I knew I would have to tell my Braveman when we got home.

After a very eventful week of going from my bed…… to the couch……. to the shower to the bed……… I was glad to slow it down to a more manageable pace of bed and showering only.

My scan was coming up and I was determined not to let that be a major focus and go down the ‘slippery-dip of panic and dread’. So I focused on positive thoughts and things that made me happy.

The major nose bleed I had the other night was a slight set back in my ‘keeping positive’ attitude and slightly knocked me off guard. Of course, as I was coughing and spluttering and crying at the same time wondering where all this blood was coming from, the Brave man walked into the bedroom where the scene was not unlike something from CSI Miami. He stood there momentarily probably trying to process what had happened, either that or he was about to get his ‘blue light thingy’ out, like they do on CSI. As I sat there looking at the scene of my pretty crimson blood sprayed over my sheets, panic set in and the only ‘positive thinking’ I was doing, was…., “this is it, this is it, I’m positive this is it.”

The Brave man was kind and reassuring. Telling me that this happens all the time in footy.

Ummmmmm, footy, yes how could I forget all those blood noses I had when I played football?? As he tilted my head back and reminisced about the good old days when he played football for the Alvie Football Club, the great nose bleeds, the proud moments of having two broken noses crunched and straightened back into place without the help of pain killers. As proud of him as I was, I continued to cry, coughing up blood and freaking out because I was thinking that I was having a full brain haemorrhage.

After the Brave man had cleaned and cleared the scene, he lay quietly next to me until I fell asleep.

Taking advantage of a week off chemo, we set off the next day, to our little peaceful retreat in the country to spend a long weekend together.

As we try and do each trip, we drop into see the Brave man’s lovely mum, who we call Granny.

Granny, is a real Granny. She lives up to her name. She has soft white fluffy hair, wears an apron a lot and spends contented times amongst her beloved roses. Hugs are always plentiful at Granny’s , but she saves her “66 kisses” for Sienna, who adores her.

There are always freshly baked treats when we arrive, a new flower to admire and stories of what this busy Granny has been up to during the week. And today was no different, fresh date scones and a cup of tea. Sienna had her first knitting lesson and she was so proud. It was lovely watching the old fingers teaching the new fingers.

 

Back on the road with our tummy’s full, and it wasn’t long until we arrived at Laver’s Hill. We travelled down Wait- A-While Road to our little house. Down the gravel road, through the forest, passed the alpacas, and like many times before, passed the sign saying, ‘Holy Water’……. For some reason this time, it occurred to me, “this is not just a sign…. It’s a SIGN!”

As you know I’m into signs and symbolism and given my scan wasn’t very far away, I knew this ‘sign of a sign’ had to be followed!

So we diverted off down the old bush track and followed the signs to Holy Water. Picturing myself, immersed in the Holy Water Creek, with my Fairy and the Brave man chanting by the edge of the water …health and wellness affirmations, I couldn’t get there fast enough.

 

And so we drove and we drove. The tall gum trees towering over us and the road becoming more of an ‘off the beaten path’ track than an actual road. With so many bumps and pot holes, not only did I wish that I was wearing a sports bra, I just wanted to find this wonderful curing spiritual place that I had conjured up in my mind.

 

 

 

 

 

 

 

 

 

 

Finally coming to a place that could only be described as a ghost gum grave yard, we saw the sign saying “Holy Water Creek”. There was no ‘curing oasis’, or ‘spiritual immersification’. The only spirits there were our ‘dampened ones’ and that of the old gum trees that had once stood tall there, before they were…… LOGGED!!

 

That night I wondered about our adventure to the ‘Holy Water Creek’, and searched for the meaning behind what we had discovered. Was it a sign of things to come when I have my scan the following week?

The weekend was lovely and I managed to play lots with Sienna and even adventure to the dam, there was a slight incline and by the time I got to the top, I felt like I was breathing through a mosquito’s drinking straw, but it was lovely to be with my girl and she was patient while I caught my breath. This trip was all about family, my mum and dad came for a visit and we all played bingo, watched family movies and sat through about 3 hours of the Fairy’s singing and dancing concerts.

 

The brave man got his ‘farmer on’ and mowed the grass until dusk, dug deep muddy holes and used his chainsaw for the first time.  He was happy being outdoors, his heart was beating to the country rhythm.

By the end of the weekend , I started to feel unwell, my chest was getting tighter, my throat was sore and I had a constant headache. Things just didn’t feel good. The ‘little worry me’ was nervously sitting on the edge of the ‘slippery dip of panic’.

With the promise of more fresh baking, we dropped into Granny’s on the way home.

No sooner had we arrived, she had fixed Sienna’s knitting, iced and filled a sponge, fed & patted Peter Rabbit, packed us up with 3 dozen homemade sausage rolls, ginger snaps and rhubarb from the garden. Not bad in 7 minutes!

 

It was a quiet drive home and I was feeling more miserable by the minute. My chest was pounding as if someone was standing on it and I just couldn’t wait to be home in my bed. The aches and pains served only as a reminder that my scan was imminent. I reflected on the signs and symbolism of the ‘brain haemorrhage/footy injury/nose bleed, and the non-existent Holy Water Creek and continued to try and interpret their meaning.

Finally home and out of the car, the first stretch of the legs felt good, as we began to take things inside, I saw the THIRD SIGN. A dead possum on the front lawn. (As far as Sienna was concerned it was a “tired possum having a sleep…… a very long sleep”.)

In a split second, I convinced myself this was the THIRD sign of death. I was no longer on the top of the slippery dip of panic, I was on my way down like a rocket. It took all my strength not to just go inside and call White Lady Funerals for a quick measure and quote.

March 15^th – The scan

My strong Troop Lisa came with me to my scan. She’s so kind and caring, every time she said something nice I’d cry. So to conserve eyelashes, conversation had to be limited to the weather and what a good car park we got out of the front of the hospital.

I lay under the big loud white donut & waited for the mechanical voice to tell me to, “Hold Your Breath”, I pictured my fairy’s face with her little freckles on her nose and those funny little adult teeth she’s growing with the cute gap.

The scan went without consequence and I was glad to get out of there quickly. As I have had so many scans, the girls behind the desk excitedly told me I didn’t have to pay, …. “You’re our best customer!” they chirped.

Ok so I know they were trying to be sweet, but I don’t want to be the ‘best customer’ at Cabrini Radiology, I want to be the ‘best customer’ at Sass & Bide or Prada or even Bunnings would do. Just not Cabrini Radiology!

Continuing down my ‘slippery-dip of panic’, I thought of the blood nose, the dry Holy Water Creek, the dead possum and now this comment, all these signs were doing my head in. What could possibly be next? Running down the school crossing ‘Lolly Pop Man’ because he’s holding the sign ‘STOP’??……. It can only mean one thing……….

March 16^th  – Results Day

I woke up to the sound of thunder and rain, my chest was ever so tight and my throat felt like I had literally swallowed the dead possum and it had got stuck halfway. Not feeling the best.

The Brave man took the fairy off to school as he does every day, I kissed her about 1000 times before they left and wished so much that when I saw her next, I would have received good results. But I knew with all the signs over the past week and my painful chest and throat, there was little chance of a glowing report.

I was no longer feeling panicked, no anxiety, just acceptance. My Health Stylist called us in and we had a quick chat about how I was feeling, he looked in my throat felt my neck, listened to my breathing and said…….“Yep, it’s thrush”…….”it’s what?” ……”Oh and your scan looked good”….. My little chemo fried brain couldn’t cope with the information and all I could think of was, “but what about all the signs, the nose bleed, the holy water creek, the dead possum, the “you’re our best customer” ???”

He explained that whilst the scan didn’t show any cancer, he suspects that there are still cells floating around. The fact that there is nothing visible to measure makes it a bit more difficult to know what treatment and how much treatment I need. So the plan for the moment would be, three chemo’s on, and a month off, do this for 5 months and then we’ll scan again.

As for the other thing…… thrush…. eeewww. I think I would have been less disgusted if he had told me that he could see a dead possum down my throat.  It certainly wasn’t my most feminine moment. My Health Stylist prescribed everything with the word ‘fungal’ in it to get rid of it.

After another big day of chemo, blood transfusions and results, we were finally home. As the Brave man read Pipi Long stocking to our Fairy. I lay on my bed and rested my head on my cool soft pillow. And reflected on the day. It was good news overall. I accept I’m never going to be given a guarantee, I accept I’m never going to be told I’m going to live to be 100 and I accept the unpredictability of this illness. It felt good to stop frantically analyse every moment as a sign or symbol of what was going to happen next and it felt good to be off the panic slide.

I looked at the lovely messages I had received during the week, and the one that touched me the most was from my beautiful Brave Man.

”Sienna and I just want you to get better and we will keep looking after you no matter how long it takes.”

 

February 16^th  – Round 7

As I put the ‘Morning Fresh’ in the fridge I think to myself, “gee I feel so tired, I could just turn up to chemo today in my pyjamas.” Thank goodness I don’t have to do my hair at least!

Even though I can’t really be bothered, I like to get dressed up for chemo, find something that fits my ever expanding girth, put mascara on my 3 eyelashes, and choose a happy scarf. And as I walk out the front door, and plant a, “I’m fine there’s no problems” expression on my face, I remember my friend’s saying, “fake it until you make it!”

It was a long day of chemo, which is not unusual for the first round of a new cycle, plus I had a blood transfusion. Sounds  so dramatic doesn’t it, but it really isn’t. As long as I don’t look at it, it doesn’t even occur to me that I am having someone else’s blood infused into my body. I am grateful though, for the person who gave blood so that I could be well enough for my next round of chemo.

After 7 hours we headed home and it wasn’t long before I slipped into my unconscious state of the chemo twilight zone for a few days.

A day later I woke up to a different view, a bright sparkly morning with the sound of the ‘merry merry king of the bush’ making his calls from his favourite gum tree. As the smell of the freshly baked bread gently woke me up, I instantly knew we were at our little farmhouse. I vaguely remember driving there, but as usual my mind was in a state of chemical confused oblivion and I wasn’t sure if the nausea I was feeling was from the chemo or the hair pin bends of the Great Ocean Road.

                                                                   the fairy and the braveman playing in the johanna dunes

As I was ‘coming to’, our mini break was over and we were making our way back home. The Brave Man and the fairy played eye spy all the way home. Sienna not quite grasping the concept that you have to see it, to play it. And things like “B T H”, (Boring, Trip, Home) is not quite the ‘Eye Spy’ idea. I happily listened to the two of them having fun, my Brave Man patiently guessing 100 possibilities for “something beginning with B T H”.

I stared out of the car window and was mesmerised by the landscape with the very dry hues of wheat colour dotted with bits of green. The hills looked like sand dunes, as the thirsty grass had dried them up over the summer. Actually it looked as dry as my mouth feels after a dose of chemo. The fields were speckled with ‘grey fluffy bottoms’ as all the sheep at once munch on the grass below. I wondered if their tendency to eat at the same time is a ‘sheep following sheep thing’ or maybe just a ‘sheep eating etiquette’ thing they’ve got going. We passed roadside stalls, bric ‘a’ brac, locally grown blueberries, potatoes & bags of horse poo for a $1. I went for the blueberries and decided against the horse poo, tempting as it was.

By Tuesday I started to feel a bit chipper and realised the blood transfusion had kicked in. It’s amazing how a couple litres of a ‘good quality red’ can pep you up.

Memory Lane
The topic for my fairy’s ‘Show and Share’ during the week, was “My Family”.  She spent a lot of time on her project and came up with;
My Dad is nice, kind and reads to me. 
My Mum is funny and has no hair and stays in bed a lot.

A little pang of guilt stabbed me in the heart. But I guess when I think about it, she probably doesn’t remember me when I had my blonde hair, when I used to run, when I could give her wizzy dizzies. I hate it that she doesn’t remember the ‘well me’. I don’t want her to have just the memories of a ‘sick mum’. So please excuse me for indulging in so many photos. I spent the afternoon looking at them all. Smiling, laughing, tearing up, looking at these photos…. Makes me emotional…….., happy happy, happy sad, happy love! If you ever have a moment, you should do it, look at photos of your kids, look at photos of your friends, or your family or your wedding. It will make you happy.

 

 

So I decided to bring those times back and help her remember. The Brave Man printed out lots of photos of her and me, and the three of us, so we could decorate her bedroom with memories.  It was fun and to my surprise, when she saw some of the photos she remembered when they were taken. As a ‘well meaning’ 7 year old with a kind heart she said, “Wow mum you used to be so pretty.”

 memories of ‘well mummy’ running in the mother’s day classic 2009

Thursday February 23rd  – Round 8
Just as I was feeling better, we were back at chemo again. As usual the Brave Man is by my side, never missing an appointment. Even though I love him being there but don’t expect it, he’s always there. We have our little routine of seeing my Health Stylist first, talk about any new side effects or aches and pains and then go down to day oncology to be hooked up.

Once I’m hooked, my Brave Man walks down to our favourite café and brings back breakfast and yummy coffees for us and any of the Gara Angeli* that might need one too.

My troops come and visit and the time passes really quickly.

The chemo is taking its toll on my body and as I look down at my scraggy hands, I am reminded of the times I would visit my Grandma. I would moisturise and rub her old hands with her paper thin skin and brittle nails. Her hands looked worn out and tired as old age slowly dried the life out of them. My body feels the same, just like one old piece of ‘beef jerky’.

The fatigue hits pretty quickly after chemo and I bid my farewell to the Brave Man for a few days as I retreat beneath the sheets. He’s looking weary and worn out and although he would never have it any other way, I can tell he’s reaching his limit with this inconvenient illness. And I don’t blame him at all, it’s relentless, helpless and a big pain in the Haemoglobin! But he assures me that he’s ok and all he wants is for me to get better.

Scamming the scammer

But there was no doubt the tedium of our current monotonous situation was getting to him. More so than ever the night the ‘scam artist’ rang!

It was fairly late on a week night and our fairy had just got out of bed for the 17^th time, having gone through all the excuses she could think of to get out of bed. “Why do ants exist?”, was definitely testing our patience.

The phone rang and a man with broken English declared to the Brave Man that our computer was broken and he could fix it if he had access to our security passwords.  The Brave Man knew straight away that this was some kind of scam. Like one of those, ‘you’ve just been nominated as a beneficiary to collect ten trillion pounds’ type thing.
But rather than just hanging up, the Brave Man saw this as a bit of sport and for amusement let the scam artist babble on about security settings, personal information and instructions on entering certain code numbers. The Brave Man eagerly replied that he would do all this to ‘fix his computer’ but the problem was that he, ‘only had one finger because the rest were blown off in an industrial accident.’

Lesson 1: Don’t try and scam someone who is really bored!

Mr Scammer was still determined and when the Brave Man suggested he could try and use his “nose” as well as his one finger, the swindler anxiously agreed.

Of course by now I was in fits of laughter (it felt so good to laugh out loud). The Fairy was out of bed for the 18^th time, wondering why her Dad was saying crazy things on the phone and laughing because she could see us both laughing.

It went on for another few minutes with the Brave Man suggesting he could use other body parts to press the keyboard. Finishing with, “I have to go my parents are coming.”

Ok, so maybe not so funny when I put it in writing, but for this little ‘ground hog day family’, it was great to laugh out loud and enjoy the moment.

 Thursday March 1^st  – Round 9

After seeing my Health Stylist this week, we discuss my blood results and the fact my ‘lollypop markers’* are coming down which hopefully reflects that the chemo is working.

My white cells are low again, but not unexpected given the amounts of chemo I’m having. So I’ll have to give myself another shot of ‘the good cell boost juice’.*

My Health Stylist says that it’s time to book in for a scan. He needs to work out how much more chemo I’ll need. We’re not sure what or whether the scan will show anything at all. You would think that, a scan would show anything unusual, and the chemo would destroy it all, but over time, I’ve learnt it’s just not how this unpredictable disease works. It can lurk in places that a scan just won’t find, But we put our faith in ourselves and the Health Stylist and hold onto hope as tight as a rodeo rider hangs onto to a bucking bull.

So this week, I have the week off, can’t say I’ll be out partying, but I will enjoy a bit of clear head space with my lovely little family. Spend some more time on my book for my fairy and get some fresh air into my lungs.

I will also think about my friend Sarah who is having a bone marrow transplant as I type this very entry. I met her through my writing at the beginning of her struggle with leukaemia last year. We have been friends since. I feel her pain and the torment of fear that she struggles with from time to time and wish this ‘woman of strength’, so much for ‘wellness’ in the coming weeks. Sarah also has a Brave Man and a little Fairy a year younger than my Sienna.

To Sarah,

A strong woman isn’t afraid of anything…
But a woman of strength shows courage in the midst of fear.

A strong woman wears a look of confidence on her face…
But a woman of strength wears grace.

A strong woman has faith that she is strong enough for the journey…
But a woman of strength has faith that it is in the journey that she will become strong.

Paragraphs taken from the poem, ‘A strong woman versus a woman of strength’ by Luke Easter

*highlighted words or sayings can be found My Lovely Lexicon

January 7^th Happy Bald Day!

It was still summer school holidays, so we packed up and took off to our little farmhouse down the beach.

By now my lovely hair was falling out at a rate of knots. It was my birthday on the weekend and I was determined not to be bald on my birthday. Really as a woman, in particular, the only time you should be bald on your birthday is when you’re actually born! So I sprayed so much hair spray on it, that I probably created a second and third hole in the ozone layer. It didn’t move and I made sure I didn’t place myself into any ‘hair blowing out positions’. No air conditioning in the car, no sitting near fans and especially keep away from blower vacs!

I woke up on my birthday with the beautiful view of the Otway State Forest from my bedroom window, and my beloved little family delivering me breakfast in bed, freshly made bread and fresh coffee. I opened presents and read cards and wished so much that I would have lots of birthdays ahead of me to enjoy these moments.

I didn’t mind being older, in fact these days I am so grateful to make it to another birthday, however I did wonder how I became 42. It just seems like yesterday that I was 39 and planning my 40^th, that would never eventuate because of this inconvenient illness.

As a beautiful surprise, three of my Besty Troops came to the farmhouse for the night to celebrate my birthday. To see them come down the drive way, I became so overwhelmed with emotion that they would do something so kind for me.

We spent the afternoon, sitting on the couch drinking tea and reminiscing about the ‘old’ days, when skirts were short, our hair was big and we’d tear up the dance floor with our radical 80’s dance moves. These troops go back a long way and whilst we may not see each other as much as we’d like to these days, one thing always remains constant…….. the love and respect we have for each other.

 

 

 

 

It was decided that while they were there, we would seize the opportunity and do the big ‘shave off’. As it was a very windy day, I did suggest just standing outside and let it be blown off amongst the gum trees, like a dandelion in the breeze. It would have been good nest building material for some of the local birds.

But they insisted on shaving and one by one they took a turn, ever so carefully and slowly and with much deliberation and consideration.

An hour and a half later there I was sitting out in the middle of our property, with my three troops hovering around me inspecting their handy-work.

 

 

Even my little fairy wanted to be part of ‘team shave off’. She stood their patiently until it was her turn. I’m not sure if she was happy to be part of the team or the fact that she was the only seven year old that she knew on earth that has shaved her mum’s head. Show and share will no doubt be an interesting subject at school.

After all was done, I took a deep breath and looked in the mirror. Although I envisioned more of a Demi Moore type look when she had her head shaved in the movie GI Jane. I guess I could work with the  ‘professional scrag fighting’ look that stared back at me.

Whilst I admire these women for their clever brains, gorgeous looks and the love they have for me that sometimes I feel I don’t deserve. I feel much solace in the fact that they all have great careers and wouldn’t change career path anytime soon to become hairdressers.  I’m not sure their good intensions  reflect their skill level as potential hair dressers. Sorry my lovely troops.

 

Despite the new hair style, I had a great birthday, I was there with friends and family, the people I love. There was nothing else could want for….. Until the Brave Man whipped up a birthday cake. Is there anything this man of mine can’t do?

 

 

January 19^th  Back in Melbourne

Round 3: “Going the Distance”

Usually before my treatment, I would go into see my Health Stylist to check in, tell him how I’m feeling, and if I feel brave enough, ask some questions. Today I was feeling brave and I was armed with questions. “Why is my breathing still very laboured?”, “Would the cancer have affected my vocal chords again and is that why have I  lost my voice again.” “Could it be in my chest wall?”

The next minute I was called in by someone different, a female oncologist who I had met before, lovely and very thorough, but not my Health Stylist! Where was the person who promised to save my life.

The change took me by surprise and before I knew it, my lip started quivering and I started to tear up.  She noticed my tears almost straight away and kindly offered me something to wipe my watery eyes. I couldn’t quite understand the tears, so I just told her it was ‘allergies’ and she agreed that the wind can cause watery eyes. “Yep, whatever!” I thought to myself.

The following week was pleasingly uneventful.

January 30^th

Shiny black shoes and new white socks………

As I get to my third chemo of my third cycle, I’m feeling like what I can only describe as a ‘trailer load of road kill’! And pretty much looking just as attractive.

But I put my fake, “I’m feeling terrific” face on and the fairy and I get organised for the start of school. New shiny school shoes, whiter than white socks and a bigger sized school dress. I can’t believe my girl is growing up.

I feel the familiar pounding in my heart, as I think about my absence during her first years at school. I so want to be involved, be a parent helper, be there for reading, but my body is just too tired and weak. Cancer is just so mean!

But I won’t let it get me down, I decide to venture out and get the car washed, so I put my scarf and hat on and my big sunglasses. Despite looking a little like ‘Inspector Gadget’, I was proud of myself for getting out and about.

As the car was getting washed, I watched the comings and goings of the people around me. A mother walked in with her two young children and a newborn. I watched her clucking around her brood, whilst they played around her feet. The dull ache of grief for what ‘might have been’ for our little family of three, went as gently as it came.

My concentration was broken when I was called as my car was ready. I walked outside and down to get my car, I felt proud that I had at least accomplished something in my day.  As I handed over my ticket to the friendly car cleaning team, a big gust of wind blew not only my hat off but half my scarf too.

About 6 of the little car cleaning dudes ran around franticly chasing my hat as I stood there trying to get my scarf back on and cover up the baldness. In all the kafuffle, I thanked them and jumped in the car before something else happened like my skirt getting stuck in my undies or a whole trail of toilet paper getting stuck to my shoe.

My fairy’s first week in Year 2

Night before first day of year 2:“I don’t want to go to school, I’ve got no friends.”

1st day: “I have a great teacher. She said she will turn the cooler on when it gets warm and the heater on when it gets cold.”

2nd day: “I had a great day, Mia and I are rehearsing for our own ‘Glee Concert’”…. 10 minutes later….. “What’s Glee?”

3rd day: “Mum it’s so great, did you know we get to do our homework in our very own HOMEWORK BOOKS!”

4th day: “I love year 2, did you know my teacher loves to eat Thai as well?”

5th day: “Dad can you just drop me at the gate?”

I was so relieved and happy that my fairy had a great first week as big year two girl.

February 2^nd 

Round 5: “Nearly a Knock Out”

I was nearly ‘yellow flagged’ as I was going in for my fifth round of chemo.  My white blood cells were still unhappy and were not recovering, it was doubtful at this level I would be able to proceed with my next round. “Bloody, blood cells”, I thought to myself.

The Gara Angeli would wait for my Health Stylist to wave the ‘play on’ flag. We all waited with baited breath. Finally the go ahead came through and I was given the ‘good juice’, along with a little ‘white cell’ booster shot called neulasta.

The neulasta is an injection that I was to have 24 hours after chemotherapy, I had the option of coming back into the hospital to have it, or I could do it myself. I figured it was only a little prick that I had to endure for half a second, unlike the big one I have endured for the past 6 years.

The following week was as I expected, an unconscious blur, with a lot of ‘vertical stretching’‘*.  My bones ached and felt like they were being crunched in some kind of medieval bone crunching vice. I didn’t mind so much because I was told this would be a side effect of the neulasta.

“Grow little white cells, grow”.

The Brave Man managed to get us packed in the car and we high-tailed it to our farm house like Thelma and Louise.   (Without the driving over the cliff bit)

The weekend was filled with loveliness from wild blackberry picking,  to deer and wallaby spotting, to perfectly still and peaceful nights that held the fragrance of the country air all around us.

*Vertical Stretching is from my ‘Lovely Lexicon’.

 Definition:  Words used to describe ‘lying in bed’ when you’re sick of saying “Lying in Bed”, when it seems that all you do currently is spend 90% of your time “Lying in Bed”.

Ta da! A yummy country baked wild blackberry pie. All made by my beloved brave man he even put our initials on the top. Is there anything this guy can’t do at all?

February 15^th   

The Eve of Round 6: “Floating like a butterfly and stinging like a bee” Muhammad Ali

I really avoid crying at all costs these days. Not because of my precious eye lashes that end up being collateral damage, but because once I start, it wouldn’t be just a few tears, it would be a whole tsunami of tears.

I had held them off for so long, but today was the day they decided to catch me unawares. A few little things that happened during the day including my latest blood test results, chipped away at my “be brave force field” and there I was sitting in my car, bawling my eyes out, or my ‘eyelashes out’, as it were.

Not such a big deal in the grand scheme of things, this time my red blood cells weren’t happy, causing me to be anaemic. So a blood transfusion was going to be on the treatment menu for the next day.

It’s just that sometimes all this can be so overwhelming, and the fear can invade your thoughts like storm troopers. It takes a lot of energy and willpower to get back to, ‘being in the moment’.  And it was just at that ‘moment’ when I could feel the ‘tsunami of tears’ on their way, that one of my troops rang me.

Her beautiful voice and kind words calmed me down. Her reassurance that everything would be ok, distinguished my fear and recharged my hope.

My Brave Man came home and held me in his protective arms and he too found the right words to reassure me that everything would be ok.

I went to sleep that night feeling back in the moment, floating like a butterfly, ready to sting like a bee at my sixth round of chemotherapy the next day.

My friend Sonia

One person I shared a lot of my deepest fears and thoughts with was, my lovely friend Sonia. I had met her some years back through a Troop friend of mine. I remember when I first met her thinking how funny and bright she was. And she shared the same passion as me for writing and laughing at funny stuff. Sonia’s enthusiasm for life and inquisitive nature, made her interesting and someone you wanted to be around.

Last year at 35, she was diagnosed with cancer. Totally out of the blue. She was at a really happy point in her life. Not long had she been married to her gorgeous husband and another Brave Man. They were in the process of trying to have a family, planning renovations for their house and sharing an exciting time with her sister Tania, as they planned her own wedding.

It started off, that I would go visit her, share the things I did to get myself through treatment and the scary bits. But it was her that would end up inspiring me, her courage and energy never waivered she would do anything to grow old with her beloved Brave Man.

Over the 12 months that she went through treatment we shared a lot, mostly late at night when the day was done. We would send each other messages as we sat in our beds reflecting on the day and what has happened to us both. Some messages funny and some sad, but we understood what we were both going through and that was comforting.

 

The last message I got from her was on Tuesday night January 3^rd,

“I’m feeling terrible. So much so I’m off to Cabrini Malvern for a few nights,

another chest infection they think. Great! So I’m all ready for the trial on Tuesday. I don’t like crying either, makes it even harder to breathe. But sometimes you just can’t help it! I haven’t cried for a couple of days now. But I know once I start I may just never stop. Speak to you tmrw. Lots of love xxxx “

Sonia passed away four days later on January 7^th 2012.