Cycles 4 and 5 - Adjusting to my not so normal routine

Here we go again! Getting used the this crazy routine that's become my life for the time being. We've stopped rushing to chemo on the early Tuesday mornings now as we've realised the nurses don't mind us being a little late...well that's what we have assumed anyway!

Same thing - check my weight, check my bloods, obvs and give me my anti-nausea tablets and we get going. Everything seems to go a little quicker now as I know what I'm expecting - no more imaginary trip to Western Australia, I'd be lucky to to reach Canberra in this time! I even know the routine of how the sterilise everything! Perhaps a nurse in training? haha

During these two cycles I get lots of visitors as well as others taking me to my appointments. I get to show them around my hood - the good coffee place,  'my chair', and my nurses!

Chemo buddies!

I also got to meet someone very special - Rebecca. She was diagnosed with the exact lymphoma as me, three months earlier. I can't tell you how good it was to talk to someone the same age going through the same challenges.

Shift work -

 My family and friends are a great help, with almost a different person each time taking me to my appointments.

Chemo crocheting with the Smalleys :) 

Does it look like I know what I'm doing - as I really have no idea! (even though I was shown numerous times) I blame my numb fingertips but I don't even think that was the issue!

Lilac wigs and birthday celebrations

I was overly happy to celebrate my 25th birthday. Yes I was going through hell, but this just made me want to celebrate the good times even more so. I thought what better way to share the love then make everybody wear a wig with me! I was so excited to wear my lilac wig. It was a very warm Autumn day - so I was quite comfortable in having no hair under my wig - but my guests were definitely feeling the heat! It was such a great day and something I'll remember as such a fun time in this whole process. Thank you everyone for making this so special.

Family & Friends - Check out the video below for lots more photos!

50 Days Strong...

When life changes to be harder, change yourself to be stronger. What hurts today, makes you stronger tomorrow.

The Sunshine Six #Session 3

The Sunshine Six project ~ my little project to bring a little happiness into my chemo journey. I want to keep myself the same happy person with a love of everything pretty.  My goal with the Sunshine Six is to begin each of my cycles of chemo wearing outfits that have the essence of being happy and full of sunshine, despite being somewhere I'd rather not be.

For my third cycle of Chemo I got the pleasure of wearing lovely the Natalia dress gifted from St. Frock!

 It was a nice sunny day so that made it even better. I got lots of compliments on it too which is always lovely :) 

It really does change your mindset when you wear something you feel happy in - so thank you St. Frock!

The Best Day!

Today was a good day - a very good day! One that was emotional and that I am completely exhausted from, but one I'll always remember.

Today I got to go in my school and take part in the World's Greatest Shave with the staff and students. 

I'll admit it's been pretty hard not teaching this year - Luke will attest to me saying one of the first things when getting diagnosed I was worried about was 'what about school?', 'what am I going to do about my class?' - I was crushed. Last year I absolutely loved my first full year teaching Year 5, I was beyond excited to know I would be teaching Stage 3 again this year but other plans were in the works for now.

At the beginning of my diagnosis I had mentioned to a few people that the World's Greatest Shave would fall during my treatment, I had even joked that I 'may' have started to lose my hair by this time hahah - what a joke that was! Try ALL of it. 

I wanted to raise some money for an organisation that helps people just like me. As scary as it was at the beginning, once I had a diagnosis my treatment plan was all mapped out for me. I didn't have to think, research, all I had to do really was to turn up. I don't think I could have been merely as positive or as (semi) calm as I was without all of this! I was so excited when the teachers at school rallied around and decided to participate in the World's Greatest Shave. 

Even though the day was in the middle of my chemo week I wasn't going to let that stop me - I couldn't wait to go in and see everyone. The day was so fun! I was truly blessed by having a roaring entry with kids shouting my name, saying hello and greeting me with beautiful smiles (they had been told it was a strict no touch policy haha). They had raised money through a mufti day and the kids got to colour their hair. 

I had a team of four egg heads and four unicorns that shaved or coloured their hair for me. I even managed to get through most of my speech without crying - yay!

"On this crazy roller-coaster ride I’ve been on so far: I've learnt that I am strong and so are you - so much stronger than you think you ever could be. Sometimes things don't go exactly go your way and you might get knocked down. But the most important thing is that you get back up and keep on trying. Sometimes you can get back up on your own, all by yourself, other times you might need a little help from a friend and sometimes you have a whole school that rallies behind u filled with beautiful students, teachers and parents lifting you up to new heights you never could have imagined. From the bottom of my heart I thank you all".

Cycle 3 - My half way point!

Dad is on duty for this one and we break the tradition of being late and are 'just' on time. I go through the usual protocol of weighing myself and getting my observations done. My nurse Theresa doesn't waste any time and sticks the needle straight through my port to get things going! To be fair she did it so quickly it didn't hurt too much.

Dad and I get set up, I begin writing in my diary, whilst he reads National Geographic about some tribes in Africa! He gets me some yummy banana bread, and ice chips of course. 

The pharmacist comes to visit me and I'm starting to feel like a mini pro with my medicine routine. Still complicated I might add but I've got it under control...I think. She tells me some great news with my treatment - that they have found extra phosphate just for me... Yay? This means I can go back to my 48hr CADD pump rather than coming in every 24hrs to change it, so actually YAY!

Luke gets to take me to my third chemo session during the week. He is super curious asking me many questions for the most part I have no idea how or what to answer with. He noticed things like why they have double glass on the windows and doors - I still don't know why? He also asked the nurses lots of questions too! He soon tired out though and took up one of the recliners for himself, having a quick ten minute cat nap - you might have mistaken him as the patient! haha

The rest of my round goes really well - physically my nausea isn't too bad, still have the gross chemo taste in my mouth during week two but o well peanut butter and hard lollies seem to get me through. The best thing was that my injections barely caused me too much bone pain or aches! Didn't have to take any nurofen or use my heat pack to get through which was fantastic.

This marks half way through my treatment which is amazing - still a long way to go but it is nice to know I'm not right at the beginning anymore. 

The Sunshine Six #Session Two

The Sunshine Six project ~ my little project to bring a little happiness into my chemo journey. I want to keep myself the same happy person with a love of everything pretty.  My goal with the Sunshine Six is to begin each of my cycles of chemo wearing outfits that have the essence of being happy and full of sunshine, despite being somewhere I'd rather not be.

Sunshine Session 2

 For my second session I was gifted the beautiful Stevie dress from Auguste the Label - an absolutely amazing company, with the sweetest staff who made it even more special to wear. 

Thank goodness for my lovely headband from Top Knot Girl which turned a bad hair day into a pink hair day! Thank you both :)

Adele!

Hello..it's me! I was super excited when I was given the all clear by my oncologist and doctor that I could go to see Adele! Granted it was my lowest point in my cycle which meant I was at a greater risk of picking up an infection and having those god awful back spasms like I got in Round 1! BUT I wasn't going to let something like this get in my way! 


 Lauren and I came prepared armed with masks, panadol, nurofen, and my anti nausea meds - we were determined to win. I had prepared during the day by snuggling up to my best friend - Chester my heat pack in order to try and get the back spasms to a minimum. 

On the way to the arena, Lauren hears requests on the radio about excited Adele fans - naturally she felt compelled to call up and mention how incredibility excited we were to be out of the house and able to go to this concert. Lauren gets through and starts chatting to him about how much we love Adele, and that its her friend's first big outting since being diagnosed with the big cccancer! She meant to say the big C or chemo but due to an earlier event where my mum misunderstood what the C in Big C meant she opted out! 7 minutes later we heard the recording - it was the funniest and sweetest thing!

We find our seats - I'm pretty happy that its an outdoor arena with lots of fresh air! Lauren and I have fun trying to take photos with our masks without offending or freaking out those around us!

Bamm - Adele gets wheeled in her box inconspicuously onto stage and the show begins! Her voice was just incredible so clear and strong for being out in the open. I was up dancing at any stage I could to move my back - and with Adele songs these were few and far between!

In short she was - Fantastic and definitely happy I was able to see her!

My chemo clauses

My Chemo Clauses

Someone much wiser than me said 'staying positive means winning half the battle', and that's exactly what I've been trying to do! That being said though it doesn't mean that you have to be positive all the time - there are some days that are just unbelievably crappy!


So here are my chemo clauses - the types of lines I say to myself before starting my next cycle, things that I know will make me feel better but yet I will just dismiss them feeling too blue/down/lazy to do them. So maybe if they are written right in front of me I might actually follow my own advice...we'll see!

~ Walking makes you feel better so drag your bum outside and do some quick rounds!

~ Drink as much water as you can - well on second thought drink as much water as you can handle - otherwise watered down cordial, juices, smoothies and green tea are pretty good!

~ Get out of bed! Even if this is only do go lay on the couch.

~ Take all medication on time, don't delay or not follow your schedule.

Cycle 2

Here we go - Cycle 2! Excited to be one third of the way through now after this but it still feels like a massive mountain to climb.

I wake up feeling happy to wear my pretty Auguste dress gifted to me and get my chemo bag ready. Of course...mum and I are running late again and we arrive to chemo ten minutes late! O well, it seems to be a tradition we have started.

I sign in and I am placed on the smaller side of the day suite, I immediately get myself all set up with lots of distractions and activities to keep me preoccupied for the time (but knowing me I won't get through more than one!)

My nurses Torah and Anna get me all set up, we have a little bit of difficulty with accessing my port but this all gets sorted pretty quickly and I'm on my way!

Now this time I don't have to wait so long for my infusion of Rituximab as I didn't have a reaction last time, so we won't be travelling as far as WA. This time we only have about 2 - 2 1/2 hours so we decide to head to the city of Churches - Adelaide. It's a shame the fringe festival has just ended in Radelaide but hopefully we might make it to Kangaroo valley!

I get special visitor today too - I'm pretty spoilt during my chemo sessions it would seem. This time it's the lovely Anna from school. We had a good chat and her positivity, calmness and knowledge about life with cancer I found to be so helpful. It's great to see someone on the other side living life and so grateful to be healthy.

I get to briefly update my diary and read for a short period too but before I know it my infusion has finished and they are hooking me up to my lovely CADD pump to take home.

This Round is a little different to last, as I am unable to have a 48hr CADD pump (apparently there is some worldwide shortage of etoposide and this affects the phosphate - look I don't really have a clue with the medical lingo), but what this means for me is instead of coming in every second day to swap out my CADD I have to come in everyday for the next 5 days! Boo :( oh well like I said any excuse to have my ice chips but I'm sure by then I'll be quite over it!

Round 2 - please be kind to me!

Rach x

Loosing my hair...and my mind!

Now everyone who knows me, knows I'm a little (or a lot) protective of my fine, wispy hair. After a bad fringe incident back in Year 9 and six months of painfully waiting for it to 'grow' out. I finally realised that my hair simply doesn't grow, so no rash hair cutting decisions for me! Well the big C sure changed that!

After getting my wig, I decided I would cut my hair shorter to deal with the constant shedding. I was loving my new hair and decided I was going to have control of this, having a hair journey where I would just slowly cut my hair shorter and shorter until maybe it was just so short I wouldn't notice it was gone? (hah wishful thinking!).

At first I did find it mildly amusing that some strands of hair would come out here when I ran my fingers through my hair. Let me tell you, this mild amusement didn't last long! My hair soon became a bird's nest, matted, dull and then began to actually fall out. It would come out in the shower and end up all over my clothes. I was upset of course but also angry that my awesome haircut had only had less one week of wear! $$$

 It sucked, after a very emotional day and the help of mum and my brother we cut off the majority of my hair to a little bird like cut. To be honest after seeing the state of my hair, cutting it off was actually easier to do than I thought, the hair (not my hair) had become so different I couldn't even compare it to my actual hair. 

CUE THE WIG!

Thank goodness my family friend/ hair angel Beck, came to the rescue by coming round to cut and style my wig. She did an awesome job and made it so much more like my own hair.

Over the next few weeks, my hair just thinned out more so until I was comfortable it just shaving it all off. Luke and Chris did the honours of this! and then I got to shave Luke's hair!

We're all in this together ~

Valentine's Day and...Wig Shopping

Ohh Valentine's Day, a day filled with flowers, dinners, love and...wig shopping. Didn't ever think this would be how I would spend my Valentines (or any day really) but here we are!

I'm unsure what to expect but the sales assistant is very calm and kind, so instantly Mum, Caitlin and I feel much better. I can't imagine myself without any hair - maybe I might just be one of those freakish people that holds on to their locks! But I'll get a wig just in case, you know the clever thing to do.
We try on a few different styles with each one me learning what looks good and getting used to wearing a wig! We end up settling on a Raquel Welsh one that I can heat and style. In the space of an hour it has quickly become an expensive afternoon with my wig kit.

Now to bring the wig home and freak out Luke by displaying it in my room!

 Mum, Caitie and I grab some lunch afterwards and smell some lovely sea air too - this day has turned out to be pretty good!
 

Introducing the Sunshine Six

Introducing the Sunshine Six project ~ my little project to bring a little happiness into my chemo journey. I want to keep myself the same happy person with a love of everything pretty.  My goal with the Sunshine Six is to begin each of my cycles of chemo wearing outfits that have the essence of being happy and full of sunshine, despite being somewhere I'd rather not be.

Sunshine Session 1

    

For my first chemo session I was ready for  battle wearing almost all black. Feeling pretty and comfy wearing my Wild Flower wrap skirt. 

Here we go! Cycle 1

I'm up and awake early - wish I was more of a morning person like this usually (yes Dave and Gemma I can already hear your eye rolls and your 'I'd like to see that - when pigs fly' comment from here!).
I put some music on and of course fairy lights and I'm ready for battle. I grab my chemo bag which by the time I've put all my books, magazines, socks, cardigan, and the kitchen sink in - it feels like a seven kilo carry on bag for Jetstar! Of course all this prepping makes me late - despite being up super early, we arrive at my first appointment 15 minutes late...whoops!

Mum and I walk around the chemotherapy day suite as my nurse Tora give us a tour. She tells us to pick any chair we like the look of. Mum and I walk as if we are on a plane - window seat or aisle? After careful deliberation we choose a seat that's near a tv as we think Dad might like to watch it. But as soon as we sit down we are instantly dissatisfied with our choice - we soon become ' those people' changing seats to a nice window view of a very rainy, cloud filled day. I tell mum to play it cool - as we are the new chemo kids on the block and just want to fit in! haha despite the fact that I am an easy 30 years younger than any other patient in here!

The day is long and I end up being in the chemo suite for about eight hours. As its my first time, they have to do my infusion very slowly just in case I have a reaction to it. I get lots of visitors in this time. From the pharmacist (who explains my seemingly complicated medication routine for the next ten days), various nurses, youth support as well as the beautiful Steph! Who came across in her lunch break and brought me some pretty sunflowers too!

She takes over whilst Mum and Dad go grab some lunch. We keep the plane theme going and work out where I could be travelling in the time it takes me to finish this super slow snail pace infusion. We work out that it will take about five hours and we will be heading to Ningaloo Reef in Western Australia - maybe I can swim with some whale sharks...if I'm lucky. It's lovely to see her and makes the day go that much faster.

My chemo regime goes over three weeks. So this is day 1 of 126 or 18 weeks. (Hmmm maybe I won't count down until that sounds a little shorter!). In the first week I have three sessions of chemotherapy, followed by one week of injections (which I have to do myself - eeek!) to keep my white blood cells up, then the third week is a rest week where hopefully my body and white cell count would have recovered. Then I do this six times over - sounds easy...right?

Finally I can go home from the day suite and have a good sleep. The next few days I go back for my other two sessions to swap out my slow release pump for - you guessed it, another slow release pump!

So far the only side effects I'm having is fatigue and that gross 'chemo' taste in my mouth where everything tastes like nothing! Besides that I'm trekking on just fine.

Courage is moving forward despite fear!

T'was the night before Chemo

In the days leading up to my first chemo, I treat myself to some retail therapy - I mean its only fair and I do need to prepare. Oh better buy some new shoes because I need to be comfy, and socks just in case my feet get cold, oh and some new pyjamas because i'll be spending lots of time in bed, oh and...well I can't really explain why I bought that top or those three other dresses. Okay I think I've slightly let it get out of control.

T'was the night before chemo, when outside my house. A beautiful angel named Caitlin was about.

She drops by an amazing Chemo kit stocked with everything I could ever think of, making it kind of exciting in a strange way to begin chemo.