I can, I will, I DID!

So I’ve had my last chemotherapy dose Friday 24^th June with an amazing lunch, drinks and few cocktails afterwards, leading me into a very lazy Saturday. My mouth was instantly sore on Saturday morning but I knew it would be the last time I ever needed to feel this way and go through these horrible fortnight of pain and emotions.  

Did you see my Y present? WOW! Gary has out done himself this time, an amazing pair of Jan Logan earings. Outstanding for Y for Yellow! what a way to finish off all the incredible presents Gary has given me since january #1 chemo. I'm really blessed!

I promised myself and Gary, no checking any emails (tick I have not checked ONE) I also promised I wouldn’t run around like I usual self after chemo for me to recover from an aching body and sore mouth (tick) usually I’m thinking, ok how can I make the most of a no work day. Instead, I’ve rested, watched bad movies, cooked a cake, took Stewie for a walk and that’s it! Pretty good way to spend a day off, so I must keep this up as my body needs this rest.

Is this a new Mez? Did chemo kill the workaholic? Just to keep it completely honest though, I’m dying to be back to my usual fitness self.

So the picture of the week is certainly this one, “teen wolf?” “Hairy Lady” “Mez transitioning?” These are all nick names from my adorable husband. I read a few blogs and forums online, it’s apparently normal, because my few weeks of delay in chemo after hospital, hair on my head has grown a bit and I’m finding it all over my body, little white hairs, on my face everywhere, chin, neck, back of my neck and forehead. I read it will go away after a little while, I really hope so as during chemo you cannot go and get facials, or anything abrasive done on your skin due to infection possibilities so I’m grinning and baring it!

It’s cold now in Sydney and although I want to be out doing some walking but it’s freezing so just resting under the blanket until I need to go out and making a walk of it, my eyes are so tired and I just need to get through this week and visit my aunts down on south coast and relax a few days before having to go back to work.

For now, I’m working through the emotions of going back to work and feeling like I’m forgetting this even happened, which I’m not yet prepared to do but that’s ok, I guess I don’t have to. Everything is in my control for how I feel and what I do, so I’ll stick to that on a daily basis. I can’t plan ahead with any of this stuff – so I won’t.

Next thing I see left to do….start to make my body and mind feel healthier and stronger. Take care of my body with nutrients and take care of my mind by balance and equilibrium of work/life - which will involve the physical side just as much.

Oh btw, I have not found a hobby yet.

I’ve developed a taste for soy milk, thanks to my aunty – I’m actually enjoying it.

I’ve re-written my bucket list.

I’ve joined the Sydney library.

I’m designing my inspiration tattoo for when I can do that on my skin.

It’s all about the #newnormal and constant inspiration now. The best thing about being away from work on no schedule or restrictions is you notice things, see shops or cafes you have never noticed, sad people, happy people, angry people and some who just need a nudge from us walking the other way to be reminded there is something to smile about.

I’m very proud of Gary this week, with a lot of pressure at work, he came home with a big smile, told me he missed me, and that he had good things happen and some bad things happen – but I know he had a horror day so his positivity was inspiring and helped me slowly come out of my moping mood of feeling sorry for myself and sore body.    

I now want to be inspiration for others to keep positive, remain focussed on how good life is and not get stuck on the small stuff. That’s where I want my attitude to make a difference. And remove the negative people who try to affect that or don’t react to it. I’m struggling to stay focussed on everything will get better but it is very exciting to think it’s all uphill from here I think, I hope.

Enjoy your day and week people, thanks for reading today! I'm feeling very sorry for myself but i'm also excited about the future. I’m going to enjoy today’s sunshine, borrow a book, get some vitamin D and maybe even get a hair trim on the back of my neck J

Perth, Margaret River Gal Pal Trip and reflection time...

10^th June to 17^th June 'West Side'

Ticking at least 2 boxes here in life, Sunset over the sea on the west side of Oz and visiting Margaret River!

Perth trip, thank goodness for this trip and for Sez inviting me along. I just needed a week to escape normal life and start to relax at the beginning of a 3 week break for heading towards the end of my treatment. 

In the Qantas lounge sydney

Thank goodness for the business class flight, which I desperately needed after having chemotherapy in the afternoon. We arrived late at Sarah’s friend’s house straight into their back granny flat, which meant I got to sleep Sydney time I think 230am, to be awake again 2 hours later and that was it I pretty much was awake. A horrible side affect of chemo, but unless i take my anxiety/sleeping pills by 9pm they will not work properly and pretty much do the opposite.

Saturday was our wine tour day of the trip and the worst possibly day for me to actually be on a wine tour. Taste buds were getting progressively worse throughout the day, coffee was ok still but wine not good. A complete waste however i knew being with Sez I’d have a good wingman anyhow. We left the pier at 945am, full boat, hens group on board but they were pretty tame in the end, such a shame – irish too, just didn’t live up to their potential or DNA J

The ‘Swan River Wine Tour’ sailed down the swan but I think they forgot the wine part. Only 4 (2 sip) tastes before we ended up at lunch at the Sandleford winery where we had a tour and lunch – so we ended up sober at the end – we had a lovely walk home for 1hour and half which was a good way to end up a day of sitting most the day and after dinner I was in bed by 7pm, woke up at 8pm thinking I’d slept for hours, rugby on, heater on, Sarah went out for drinks with friends and then we both woke up at 9am sooo obviously needing that sleep, I was absolutely shattered, most tired I’d been in a long time. I started to realise that I can actually just sleep when I need to. Sez’s friend had the perfect quarters for us to stay in, great beds, warm, great kids and she is beautiful and a complete supermum! Sarah does keep good friendships from what I’ve seen over the years and time spent with new people always inspires me if they are genuine and nice. It gives me something new to see and experience and also reinvigorates something in me of other people’s lives and how precious everyone’s family and friendships actually are. We had breakfast made for us - waffles (pic) and then dove down to Mgt River.

Margaret River

It rained the majority of the way so didn’t stop anywhere but got to the apartment after stopping the cheese factory, OMG smoked cheddar which became dinner. Wine tasted wrong both red and sparkling so I gave up on that and went to bed instead with a cup of tea. Worst week to come to wine region. Gary swore it would only be 24 hours of bad weather, here we are sitting here at 821am on Tues 14^th June, still RAINING!! Went for a walk down to the beach to see the sunset the ONLY thing I want to see when I’m here and I saw it! J

Sunset over WA -
Bucket List Moment

Prevelly Beach Selfie

I did a poo! Yay, only took 4 cups of plunger coffee, half a banana, peach, kiwi fruit, 6 laxatives and 3 prunes. Yes that is normal for chemo patients. The first thing I was told when starting chemo was “eat prunes….a lot of prunes”. I was so uncomfortable last night I couldn’t eat dinner, so I’m much chirpier now. 

Doing nothing has been actually physically tiring but mentally refreshing. Leaving to go home on Thursday 16^th was via Busselton and my body was aching so bad, shooting pains and incredibly painful but I didn’t take my Endone and Lyrica as I knew it would wipe me out and I didn’t want Sez driving without a companion, so I took Panadol, waited for Perth then drugged up, went to bed and waited for dinner time. Italian with Sez and friend, a place recommended by a few (including thank you fb friend) and after 6 quick sips of red wine I was on a high, not the best feeling but pain is worse. It’s one way of dealing with pain especially after having felt it for almost 6 months I would rather feel high and happy than in pain and not smiling. I don’t care what people think, I cope in my own way and if red wine and pain killers is how I deal with a shit moment then it’s what I’ll do. I will NEVER take life for granted and I like to think I wouldn’t say no to anything that is a life experience where there isn’t a good reason to say no. I am only just realising at the end of my treatment that I nearly died. At 34! What a completely horrible thought where I have said no to thinks that I look back and think I should have said yes to. Even though my life motto to Gary and friends has always been ‘why not’ or ‘yolo’ but I never truly lived up to it, letting work get the way, being tired or feeling lazy. Now I know what tired and in pain actually really feels like.

I always thought my upbringing was dull, unadventurous and limited in experiences, but in fact I spent so much of this trip with Sez reminiscing about our childhood moments and experiences of our parents and family trips where I realise we have very similar upbringings and what our parents taught us and realised that’s why I am who I am now and how well I’ve dealt with cancer treatment, because my dad made me resilient and although he never actually said ‘you can do anything in life’ I think I just knew it anyhow, you make your own luck, you make your own way and you don’t rely on anyone else. This is the perfect lesson in life, but dad never actually said those words - he never actually said that out loud, but I think back now, and he taught us exactly that by example.  

As much as I say a lot of positive commentary and facebook shows a certain picture I’m trying to pain, I’m really hurt by a couple of people in my life from the past couple of months, I will never put them in this blog but I will address them personally in my own way/time. I don’t think I deserve anything special because I had Cancer but there are people who should have been more supportive. It upsets me but don’t think I ever thought until now about this, I never had expectations of who should and shouldn’t and would and wouldn’t but I say this vocally because I need to deal with it and move on to not let it linger or affect me in a very emotional time – to the people who have supported me – I am so amazed that they think of me worthy of supporting.

Flying Home 'East Side'

I’m on the way home now, leaving Perth to go back home and why do I love flying? Not just because I’m lucky enough to be business class most times but because Qantas crew are always the best in customer service and asking where I’ve been, where I’m going and how am I. 

The thing I love and sometimes completely get annoyed about weirdly with Gary is that when we fly he makes the most of it. The most of the pre-flight champers, on-board wine, post-dinner port and the copious beyond that. I often look down on him or am disappointed with him for drinking too much but why? Why do I do this because it’s actually going along with everything I stand for! Make the MOST OF EVERYTHING IN LIFE. I don’t know about you but flying is where I get my life changing moments and most inspiration. The altitude? I don’t know but I have life changing moments EVERY TIME on a plane. The people I see and wondering where they are going or why do they look so miserable, or why so happy, and the people I’ve met on board - the music I listen to. On the plane I end up thinking about life and how amazing my life has been.

The crew were perfect too as i wore my mask as i really don't want to get sick so they made sure i was comfortable, offering me hand sanitiser during the flight but then shaking my hand to say welcome aboard - so i used the hand sanitiser again.... :-) 

Staying Germ Free!

Back home, back with Gary and ready to relax for another 2 weeks of figuring out what I’ll experience and learn beyond chemo!

3 weeks since my last entry – SO MUCH TO talk about including I have bigger things than that to worry about...

yes i have bigger things to deal with than some of the stuff i'm hearing around me including work related stuff - so im taking time off! YAY!

I’m exhausted…I found my adopted brother AND andd Bootcamp and Angels in my life!

·      One thing i've learned - i'm not taking crap from people and i'm not going to get stressed by them. 

·       I find ppl are so precious now, the way you speak, reading out of context, needy, judgemental and completely oblivious to the things some poeple are having to deal with right now. But how do you teach them? I tend to leave my bald head shwoing and wear my cancer ribbon and plaster a massive smile on my face sot when they see me....i hope they feel something resembling....shame! 

I feel surrounded by cancer right now. Everything around me seems to remind me I have it. How have I lasted months without feeling this yet? I go to the bathroom and I remember…shit I have cancer. How did this happen to ME…I don’t get cancer….34 year olds shouldn’t have to worry about this. Old people get cancer. But the word is everywhere. It’s making the end of my treatment really difficult because I’m thinking about cancer and me 24/7 where I wasn’t before now. I'm trying to distance myself from negative behaviour right now because I’m mentally/physiologically suffering and I have no idea how to handle it. I’m going to have to find inspiration somewhere externally outside myself, books and online blogs/websites. I feel like people are just sucking energy out of me.

I tell you, if I can give you one piece of advice, refocus yourself on having real conversations. The amount of conversations I’ve had where half way through I wish I had the balls to say…”dude just get to the point” or “I have bigger things to deal with…can I have a sleep while you continue on talking about nothing important?” And I don’t mean to be mean.

Exhausted 25^th May – 4 hours’ sleep, eyes are shocking, emotional at why this even happened, I think I’m only now reacting to ‘you have cancer’ news. This is weird I’m only now getting emotional and physically over everything, and over having to do all these blood test and Dr appointments, extra scans, dr appointments, lung function tests and balancing everything!

What’s now keeping me going is the Bootcamp and my Aunty Mieke and Ngaire visiting me and helping with the Bootcamp. Other than that I want this experience over with.  OG I’m so emotionally broken now. I’m starting to break.

28^th May – Bootcamp is here what an amazing and exciting success amazing, the people involved and amazing effort by Deltafit and Frankie’s friends (fitness first trainers but their own time). MMM Catering gave the food at ahuge discount. My ANZ regional director donated $300 of his own money pretty much on behalf of the company due to internal policy meaning we can’t donate to these kind of things. What an amazing human being and human spirit. We raised a total of $1120 making it over $5k in total, crazy insane amazing amount of money i never thought i'd raise.

After the bootcamp I spent 2 hours finding an organisation who would take our leftover food, in the end OzHarvest picked it up and donated to the needy/homeless shelters in Sydney. I had to have an injection for low immunity.

  

I’ve hit my limit…emotionally and physically I’m just tired. Mentally…I’m done! So I’ve decided to take time away from work finally and will entirely switch off from it. I’m deadly serious about NO emails, none. Everything is just for me right now.

1^st June, met Maddie from Leukaemia Foundation for a chat finally, felt it was too late but she assured me it’s never too late. It was an hour of pure passion from her, interest in me, I felt comfortable, I wish I’d had her months previous but I feel like I’m going to need her more than ever now. We have set up another appointment for june to chat. She sent me 40 leukaemia foundation green ribbons, bless her as this will come in very handy for something I have planned J

Can I throw in randomly my vic colleague and friend suggested I drink a green smoothy to get through…. Hahaha I love this because it feels like if I just did this, I’d be cured forever! HAHAHAH love you Claire.

Suddenly, noise is doing my head in people talking too much, I need to not talk – I think my absence from work will do wonders for this alone, no having to TALK to people.

On Friday night 3^rd June Gary and I had dinner with our PT trainer Sun and the gym girls which we almost didn’t make, we decided to take the train to Eastwood Sydney, but half way I felt so horrible we almost turned back, I had no intention of speaking to anyone so we sat at the end of the table. But Sun had planned this orange/pink dress code because they were my favourite colours and even though this was a dinner for someone else b’day not me, she made something special for me. I wore an orange dress, gGary wore an orange polo and everyone had something orange/pink on. One I got there and started chatted I sat at the end of the table with a bottle of BYO red and before long I was loving the entire night. Got back to the city and had a couple of drinks with Gary and cried the entire time J thinking back…I have no idea what I was crying about but Gary was amazing.

Stop telling me I look so great I am sorry but will people stop telling me I look good. I’m starting to think I need to just slap people now. That’s a TV campaign right there….stop telling people going through poisoning cancer treatment they look good and just give them a coffee or muffin with chocolate. That’s more valuable than your stupid words you think are helping.

I have decided if was prime minister that I would create more leave opportunity for people going through this type of serious treatment, I have now been using unpaid leave at work now for quite a while, sick leave exhausted and keeping annual PTO for future holidays planned – something should be available for people going through this type of thing. I actually suggested to my HR Director that I use maternity leave because I’m never having kids, she took me seriously and raised it with my manager in all seriousness. Opps. I was justjoking (kind of not really but oh well)

Can’t sleep – I can’t sleep all of a sudden.

Intense pain in body with shooting pains, I’m crying every couple of hours with this, just nerve pain so endone and lyrica are helping but it’s a reminder hourly that I’m living a new normal.

6/6/16 - Oma in hospital I found out my 99 year old Oma (Dutch Grandma) is in hospital with a broken bone in her hip from a fall – we have just booked flights to go there for her 100^th birthday in Jan2017 but now is the dilemma that if something happens do I get on a plane?

6/6/16 – Lung function check up  I saw DrTimmonds today after a lung function test and she said it all looks good on the lates CT scan but my lungs are struggling with transporting the protein around on the lung function test. She things I’ll recover but suggested take it super easy! And see her again in a few months.

7/7/16 Tonight Sez came with me and we saw the Andy Whitfield Story ‘Be Here Now’ – thy could support the charities hugely if they sold tissues at the theatre door.

Chemo#11 – feeling sick on way to airport, purpose of trip is to switch off relax, enjoy time with sarah, give back time and friendship to sez who helped me through a lot. #11 present CHEMOTHERAP… a new Nexus 5X Phone. Sooooo love it! Thank you beautiful and thoughtful husband.

Funny, sez said to me ‘I don’t think I’ve ever asked you how you are” to which I responded, you never got the chance I told you everytime I spoke to you. Gary and Sez are probably the only 2 people I’ve been honest and open with to the dirtiest of details.

Leaving gary in ‘stressmode level EXPLODE’ and happy to be getting away from the norm. Routine. Sadface atmosphere it can be in the city sometimes. I see it every time I walk through the city, unless you are surrounded by tourists, the faces of people are either dismal, numb, on a mission don’t get in my way or you cant see it because it’s looking at a phone in front of them which you have to dodge not taking them out by moving sideways cleverly last minute amongst the other people looking at their phone.

I always get paranoid on the train which I get every chemo to st Leonards. They look at me a like I either am contagious or ‘what the fuck would someone dye their hair bright pink?’ I feel sorry for them actually. Just accept everyone. We all have a story – well that’s what SBS says J or i need to stop reading into it so much. Although I remember last year I dyed my hair light pink, inspiration from Ke$ha. My boss was horrified, I think she expected my work ethic would change…its just HAIR! More important things people!

So I’m on a flight to Perth right now, by now Facebook is showing 3 posts, me in Qantas business lounge with sez drinking a red after chemotherapy. Upset because Gary was so tied up in work I had to kiss him goodbye while on a work call,

Kelly and Antonio. My Qantas homies, as always, Qantas bring out the best in business class – adding in lay flat bed I might use if the wine runs out J or my energy runs out first J I hate watching moves on flights, I get bored, feel like it’s a waste of time when I have music to listen and be inspired by!

Music is a combination of Q playlist – (country of course) and my mp3 player.

Keith Urban – ol’ fav and always good for inspiration on some level. “These are the days” from the Gravity Album. Lyrics like this that inspire me “Life’s for living child can’t you see, these are the days we will remember, these are the days that won’t come again, the highest of flames become an amber, and you’ve gotta live them while you can…drums and guitar getting faster………these are the days we will rememberrrrrrrrrrr! Woohooooooooooo. (Mez looks out of plane window inspired, teary,

“Take them by the hand don’t let them walk right by. DAYS GO BY! “

Almost ALL of my inspiration before and after ‘chemo days’ that’s by new marker in life….before and after chemo….circa 2016! The year I lived, nearly died, met amazing people, re-found people, fell more in love with my husband, found out my dad is the best person I know!

So chemo was amazing today. My husband left his super stressful and horrible day after flying back from Melbourne in the morning exhausted, and came to chemo because I asked him to. I’d done so many chemos alone that I was over it. I wanted my last two chemo sessions to be meaningful with the people I want there. AND so excited and inspired every damn SECOND with – Martin Gillespie – my new big bro. I don’t have a brother so he is IT! And…am I inspired. This man came into my life thanks to Ruth my beautiful friend I am also utterly inspired by with fitness, passion, brightness, energy, love and what a big smile every time I see her Northern English face! She introduced Martin to me a few weeks ago to and he has filled my heart with so much hope and drive to get through these few weeks and beyond. I wish I knew him 6 months ago! I can be so honest with him and no judgement but understands every word I say of this journey…

OMG….. John Denver is now on my Q playlist. “Country Road…take me home…” currently using my Qantas napkin as a tissue.

So guys, I’m happy, smiling and energised to get through 2 weeks before I’m done with this shitty chemotherapy – one to go, its poison through my veins and making my life all about some horrible stupid disease I shouldn’t have, I DON’T deserve and who knows why i got it. Who cares I guess.

Now I’ve arrived for my girl’s weekend and Sez is on another flight from Sydney on Jetstar so I’m waiting for her in the lounge before we venture to her friends for a bed for the night. I don’t need any type of sleeping tablets tonight I am definite. 

It was a long blog but important things have happened and will happen in the coming weeks. Mentally a tough couple of weeks. Physically touch...but no work will make all the difference. 

I am blessed in many ways..a few pics for you on this one. 

Getting my immune booster for white blood cell count

Dark hair moment in May

I’m NOT so strong…18May16

Hey all, so this week I was back at Chemo (Friday afternoon) and instantly I remembered how much I hated it. I had 4 weeks break since the previous chemo session and I was feeling so human and upbeat and energised. Especially having toned down the exercise and working less hours or I should say normal hours. So as soon as I had one chemical going in, I felt the difference, the taste that makes you want to vomit or just feel ill. It happens pretty much instantly, which I still can’t get over. Considering the first thing they give you is a pill for nausea.

So I’m mentally struggling this week, for some reason the sore tongue and jaw and mouth is back. Something I thought was a thing of the past since the Bleo chemical had been dropped, but its back with thrush also, YAY for me, what a horrible word, but the nurse has given me some mouthwash and drops for it – for a week I thought my tongue was black from a glass of red wine I had, but apparently not. The mouth pain is not severe, just enough to feel miserable. Monday at work was pretty tough, I popped my headphones in and sat somewhere different to not be distracted so badly. I sent an email to my teammates saying, sorry I don’t feel well pls excuse my quietness. I dragged my arse into the office but wish I had stayed at home instantly. The walk over there at least was something.

Being positive is a struggle right now, well actually that’s kind of ok, it’s the constant comments I’m getting from people that ‘you look so well and healthy’ or ‘you must be finished treatment by now’ and 'it must be getting easier' or my favourite ‘you are so strong’. I feel now that I’m getting to the end in sight that I have to continue the façade of pretending i'm feeling good, and looking good with makeup and a wig and drawing on eyebrows. I actually feel the need to prove to people it hurts and I’m not better yet but then I try to snap myself out of that. I think I’m just over it. But I like to think I am an inspiration….to be honest everyone else around me is inspiring, I don’t see myself that way, but I do understand what they mean. I try to.

As you can tell, I’m getting frustrated since my latest chemo, I don’t want to be social and I don’t want to have to tell people how I’m going this late in the game. So I’m avoiding the conversation.

Reading this back it is so negative, but needs to come out. I am over it...my body is aching today which is again something i had forgotten since a month ago, I had today as unpaid leave as my usual 2^nd Wednesday and went for a massive couple hour walk around Sydney harbour and domain and Barangaroo. Such sore legs now. Gary has gone away for work and all i'd like to do is have a glass of Shiraz and sit and relax but wine tastes like crap and food isn't much better. I wouldn't waste my money on good food right now. 

BUT IT'S NOT ALL DOOM AND GLOOM – if you look at the amazing Facebook posts I’ve put up on Sunday I have something to pep myself up with. I have the negative over and done with, I feel better. Now let’s move onto the best part of the last week!

21 people ran in the Sydney SMH Half Marathon on Sunday in my honour! That is amazing J I could NOT stop smiling all Sunday. Plus Dad and Wendy stayed for it in support which was super fun. I was exhausted from all the people interaction and got a little tired and cranky a few times but absolutely loved the weekend.

Everyone who ran did brilliant times, they enjoyed themselves and we crashed the Irish pub afterwards with a few ciders and sweaty armpits. I had people from Melbourne fly up for it, Wollongong and all over Sydney.  The support was a little confronting and overwhelming – I actually feel really guilty about their efforts and the amount of people who have donated. I feel like the hashtag is self-indulgent and that I shouldn’t be making such a big deal about all of this. Considering so many people go through it or have.

My father is amazing, he couldn’t be more supportive and aware of my needs right now. Wendy has been great sending me messages and supporting dad. We had lunch with Wendy’s son and his girlfriend and family, which was great fun on Saturday, and they were lovely to hang out with.

The only other news is my digestive system completely packed it in over the weekend and I was in the most uncomfortable bloated discomfort ever. It has gone from one extreme to the other with antibiotics and then back onto chemotherapy.

Coloxyl and Senna are currently my best friends!

Some pics below to show you my week in pictures. 

the joys of having
chemo induced thrush

sore tongue

this is my current daily food
consumption due to sore mouth

the awesome gals who ran for
#teammez from work distributer #LOVE

the team from work and friends WOW

my #teammez sexy ladies!

new jumper ordered in from US,
so comfy and ready for winter 

this is my current antibiotic -
lovely yellow liquid 2 times
a day after eating. Tastes amazing! NOT

Hospital visit again…Allergic Reaction

Nothing too drastic, no admission or tubes or poking and prodding. 

This morning I awoke with quite a rash all over my stomach, neck to top of thighs. I rang my Dr and he fit me in at his Royal North Shore for a quick look. He said I’ve had an allergic reaction to the antibiotic, 7-10 days after treatment starts is usually when things like this happen, so he wasn’t totally surprised. He has changed my treatment for the next fortnight changing to another antibiotic not in stock so I have to pick it up tomorrow, this will allow time to keep treating but he wants me back on the other AB as it’s the best treatment. Although in saying that, he spent 1.5 hours with the infectious unit and respiratory Dr determining that they still don’t know what infection I had – but nevertheless – he will change treatment for now, go through the next chemo and then refer me to a Dr who can build my immunity to Bactrim so I can go back on it. Apparently they give me small doses, build up my tolerance and then put me back on it for the remainder of the treatment and beyond chemo for a while. Like the flu shot concept really.

Dr Arthur didn’t recognise me with my blonde wig on…haha. And he has asked me to take photos of the rash. So I’ll make sure they are not uploaded to the cloud. J

So yes, I’m having wine tonight.

Back in the office today was nice, seeing my colleagues, chatting with my favourites, but no contact. I’m not risking their germs…I also stuck to my, do what work you can get done the rest can wait to tomorrow. There is always more to do. There will always more to do, I changed the way I organised my emails to make sure I focussed on the most important incoming emails and dealt with priorities that way.

Exciting news for those who saw my Facebook. We have booked Singapore Grand Prix for September, something I wasn’t sure of but I am so happy Gary insisted on just booking it anyhow. 5 days in Singapore watching Formula One, drinking, eating, being in the sweltering heat and no work sounds heaven. So we are off again. 2^nd time for me, 3^rd time for Gary. Now let’s see if the boys (hint hint) now book their trip.

BTW Kenny/Paul….YOLO!!!! Trust me, if you can say yes to something….say yes! You seriously only live once. Just fkn do it…you could die tomorrow.

If there is one thing in life that annoys me, it’s the umming and arrghin over should I? If you can afford it, want it, think you want it, have the opportunity to do it, just do it. The only thing that could happen, is regretting you didn’t do it.

That’s all for today peeps. I’m tired, I’m bored of the Dr visits, I have no fitness motivation like I used to, I miss Sun and her PT sessions, I get sad just thinking about waking up and not being able to just be energised, and I just want to go and have cocktails and feel pretty and have ridiculous fun and know that I can back it up the next day without feeling flat and sad, I look forward to the 2^nd half of this year. And I’m a bit sick of telling myself just get through the next few months…. I find it hard to hang onto the inner strength I had a couple of months ago…I have to be very selective who I am around now to keep fresh and happy.

Thank you to everyone who have told me my blog is exciting, because it is helping me a lot. 

Chemo postponed...and eyebrows be gone! oh and don't forget the Bootcamp

So change of plans on Friday morning. 

A scheduled appointment with Dr Arthur meant I spent an hour discussing how my recovery was going and if he thought chemotherapy after a week of antibiotic treatment was a good idea. I reiterated, ‘I’m strong, tough and mentally prepared to just get it done today’ but he discussed with respiratory Dr and she suggested another week of treatment and recovery before hitting my body with the chemicals again. Even with the intense strength of antibiotics I’m having, the chemo will lower my immune system especially in conjunction with one of the medications which will lower my immune system. 

I could have swayed him to be honest, he felt bad for me and suggested I ‘looked disappointed at delaying chemo’ but I reiterated ‘you are the qualified one here to make a judgement not me’. Dr Arthur likes to listen to his patients and take their judgement of how our bodies feel, what can we cope with, what is too much etc. But I needed to take his guidance, because I’ll often make a call that ends me in pain or stress just because I don’t believe in excuses. The way I was raised really, don’t complain, hard work is normal and physical pain is just something that comes after hard work and determination. So after Dr Arthur felt bad for me, I told him I’d not even care when I left his office and would be back next week.

We discussed a lot including another CT Scan to be booked, a visit to respiratory Dr to check lungs are back to clear and that my bowels are inflamed from antibiotics. I have no pain, but my mouth is slimy and dry cracked lips from antibiotics, I probably won’t be able to give blood in the future, I can’t get my 6 monthly teeth cleaned until after treatment, the results from the cultures and bronchoscopy were negative to PCP that he thought I had, which puzzled him – but treatment is working so let’s focus on that. I don’t care what I had, I care how I feel.

So back home I went and went back to work. Until next Friday Chemotherapy monster!

In other news, I looked in the mirror randomly this week and noticed “eyebrows be gone” I am hanging onto a couple on both sides like a bad comb over equivalent, but my eye lashes also hardly have anything to put mascara onto. So it’s pencil liner all the way for the brows. Gosh I hope they grow back.

I was meant to go to Melbourne on Thursday but I have postponed as I don’t want to have one day away with an already busy week, plus I think a plane full of potential germs isn’t my idea of playing it safe at the moment.

So THE EXCITING NEWS is Sarah’s ex PT Trainer Frankie (DeltaFit) and I are planning a Charity Bootcamp on the 28^th May under the harbour bridge at Bradfield Park Kirribilli. We are aiming for $1000 on the day which equates to 50 people. We have sponsors on board and Frankie and I are super keen for this so i'll be possibly asking alot of favours from friends. With the people I know, Sez knows, Frankie knows and beyond I believe we can do it!

This would take me up to over $3,000 money raised for Lymphoma!

So if you read this and want to come along please check it out and register via the button on DeltaFit's website and find 28^th May Charity Bootcamp and register. It should be a lot of fun and although I’m so scared of it being a flop or a non-event, I’m determined to make it great. I love it when hard work pays off and people jump on board other people’s passion!

Hope to see more than 50 so pls spread the word, my facebook posts were all updated plus loads of friends sharing it so jump on board!

http://www.lymphoma.org.au/page/1135/merrilyn-gardiner-charity-bootcamp-

Lesson in not needing to be a Hero - 5th May

It’s been a blessing having Sez with me this week at home while Gary travels for work. You know I can deal with moving around the house and walking to woolworths when I need to but geez sometimes just taking Stewie outside for a pee pushes me over the edge like I’ve been to the Gym. Thank fully Sez, Gary and any other visitors do this for me the majority of the time. It’s a small thing, but means massive amount to me. I made dinner for Sez and I using my vegetti utensil and my arms were aching after. Those carrot and zucchinis take some shredding.

This week is all about back at work aka emails, the lounge, blanket, Buddha digital radio, coffee which currently tastes disgusting but I push through one cup (and the 2^nd usually goes cold before I finish it because I just can’t bare the taste) water and diet sprite…these are getting me through. Oh and did I mention Gary’s amazing vegetable soup? I’ve been eating it every lunch and dinner for the nutrition and yum factor. I need to eat more of it because I lost 3 kg in the last week. Not something I expected, however all the antibiotics and pills I’m taking have affected my mouths taste worse than chemotherapy side effect. Bazaar. Don’t even get me started on a toilet conversation….(changing subject).

Not being a hero is something I picked up from my work colleague. Sweet kind and super thoughtful, I heard her say this a couple of months ago and stole it and have decided it’s going to help me get through the next 2 months with not pushing myself. So I’m not being a hero with working 24/7 and I’m not having to exercise every day, I don’t need to be in the office to be seen, I don’t need to attend meetings to be productive. None of these matter if I’m only hanging on to feeling 'well enough'. Lesson for everyone not just my situation but of course I will always try my hardest with everything I do, just not to prove I’m some kind of hero.

Basically I’m taking everything a bit more serious. But of course only with my health, life’s too short to take seriously. So with diet/health and work/life balance beginning to come under control….next is a hobby! OMG this will take me a while…

When I returned home, I checked the mailbox and I had received a singlet from Lymphoma Australia! This was for raising over $250 for the SMH Half marathon. I wear with pride the below! 

I am becoming quite good friends with the Lymphoma support group...and get excited...because i have a surprise for my next blog update. Something I'm arranging for even more fundraising and support during May!

Highlight of my day? I caught up with Jo, an amazing human being, compassionate, thoughtful, super smart, georgous and not only inspires me across many levels but she reminds me that life is amazing to live and she makes the most of it - a passion we share but i forget during this journey on my bad days!

Chemo tomorrow.... :-( 

2nd May – Home Day!

I knew there was something I loved about this ward, 2 rules the nurse said. 1. No flowers, 2. No children under 12. Um…I think these rules were written for me personally. People always send too many flowers, even though when I get them I love them, but logistically they are annoying sometimes plus they seem just something people react to much too quickly. Depends on my mood i guess. Tulips are different, there is always a time and a place for Tulips!

I’ve used every last gig of my phone plan streaming Housewives of Melbourne, so Telstra I’ll need some more pls! HCF paid for my tv, but I can’t say I watched much of it J Not a lot to choose from except the lego movie on repeat. ‘everything is awesome’ (thanks to Sez visiting) is all I can hear now.

I texted Gary early who is at the airport, so bummed I won’t see him when I get home until Thursday evening. Having a few days to himself at home I hope has been at least reprieve from a few things.

I was actually pretty excited about breakfast this morning, I think that’s why I was up and awake from 5:30am, ABC news on, coffee from the patient kitchen ready for Muesli AND Scrambled eggs. First time I ordered a hot breakfast. The things you get excited about right J I quickly got unexcited about the eggs when I got them.

I popped out of my door at the end of the corridor, there is a window overlooking St Leonards. The window is so warm, I leaned against it and drifted out of body for a moment. Quickly coming back as someone pushed their Nurse Call buzzer which rings out everywhere.

I headed up to cardio unit for an echocardiogram – the machine shut down from overheating towards the end, so he had to blow some dust of it and power it back up. Then nearly pulled my port out my chest taking the chest pads off. Painful moment avoided. They found some fluid on the lungs but the heart seems fine. Heart murmur still there, my littles spastic valve trying to beat away! So the registrar said they will prepare me going home if Dr Arthur is happy after an x-ray of my chest.

Ok, so I think I horrified my respiratory Dr, and the Haematology Registrar, both thinking I’m mad for wanting to run 7km in 2 weeks’ time. Although advising, your body will tell you, I’m Mez and my body only tells me ‘do more’, so I’m going to do something that makes me teary even typing it….I’m going to take the Dr’s horrified face, implant that into my memory combine it with the memory of this entire week just gone and that I have re-prioritised AND pull out of the SMH Half Marathon. I’ll be there as a support person of course and wave the #teammez flag as people run past. I hate doing this, it was something I really wanted to prove to myself that I could do during Chemotherapy, when a lot of people can’t do in normal healthy life. I’m very disappointed. In my body, in my mind and I hate that I got Cancer!

*Warning: Going into depression mode for a minute*

I need to find my purpose for this whole thing….that will put me back on track. I think I’ve exhausted google images “inspiration for people with cancer”. Now to eat the words I’ve posted on FB and Instagram!

I finally escaped this place at 6pm - after waiting 2 hours for my take home meds, unexpectedly eating dinner, and dying to get into the fresh air and cab home.

I now have 20 pills to take daily for antibiotics, steroids, another antibiotic, folate tablets for vitamin B, panadol. 

Thank you to Sez for being home for me tonight and looking after Stewie, i really don't feel well. 

1st May 2016 – Penultimate Day?

CHEMOTHERAPY - LETTER R for (he is grasping at straws for this but I love it) Retro Records! Yes he bought me an MP3 player to replace the last 2 I’ve lost on planes. This one came early because of being in hospital. Presents left include ‘APY’ good luck Gary with Y! That’s a tough one.

My best sleep yet in here, and both times I was in dream land it was ‘knock knock vitals check’ I think we should just have to leave an arm out and they don’t need to wake you hahaha. Not sure how that would work with the temperature check but I didn’t work all of it out. I woke thinking "only one more sleep" Yippee. Which no different to my situation, is something you usually count down to an upcoming trip or exciting event you have been waiting ages for.

Biggest things I’ve missed? Sharing my bed with Gary, Stewie and walking! I’m going to sleep standing up from now on I think. But I have spent time doing things I generally don’t at home, like updating my blog finally, emailing my family overseas, colouring in and updating my social media on @ozwwcwc my new support group for women battling cancer without children who a career focussed as I feel there is something i can talk about first hand. So I’ve been productive.

It’s raining outside so I’m not missing anything out there. I’ll enjoy my last day of life contemplation before back to some kind of life tomorrow.

I moved after lunch to the Hematology ward 8E. Again my own room, another isolation type of room, but this one has a mini bar fridge! Bonus. It’s nice and private, but then you do have to wonder what our bodies have the ability to do and expose others to, is pretty scary.

I’ve refocused my time now onto reading anti-cancer by Dr Servan-Schreiber. My aunty gave it to me, and it focuses on the healthy side of preventing cancer. ‘A new way of life’ which is exactly what I’m currently searching for on all levels. Lifestyle, food, cut back on cancer promoters and eat LESS sugar (as I finish a chocolate).

I never wanted learn much about all of this, the cancer, the preventers, the promoters etc, but diet and health will always interest me as it should everyone. I was so healthy before this happened, so it isn’t ALL lifestyle. Unless red wine causes cancer then I’ll die very young :-) BUT I think we can take tips from someone who has spent years studying along with his experience and gather some tips from it.

Sat outside for a while, besides almost losing my gown from the wind, I also couldn’t really open my eyes from the sun, I decided perhaps my bed is a better idea.

Now that I’m another ward, they clamped by portacath and I no longer have my robot SBU. he has left my side, for now I’m free. Well free to sit in bed and wait.

Gary and Sarah did their daily visit and chat. Cup of tea of course and home. i get home tomorrow and Gary flies to Melbourne and hobart so ill see him Thursday night. Not ideal, but life. Sez is my housewife for the rest of the week I've been ordered!

My dear neighbour the Entertainer

No hope of me being bored when i was in the Burns Unit when ‘Patricia’ is awake. I just heard her singing “I’ve got a cannula, I’ve got a cannula….” On repeat to herself. She has upgraded from talking to herself to singing now. At least she is entertaining herself.

The last Dr dressing her leg said he had to go but he would be round, she asked round like what? He replies like a rissole…but she said they are kind of flat not round, round like a wheel is better. Dr – you’ve been told!

After yelling out for the nurse for 20 minutes asking where has everyone gone?? The nurse arrived, and she instantly said oh sorry did I yell too loud? Funny! There’s more I could write back I haven’t been keeping track, should have though, it would have given me great content for me blog. I hope she gets better soon. 

April 30th – Welcome to Planet Bored and hospital food..

Now that I was feeling well enough that i could be recoveringat home - although we still don't know what kind of infection it is until Monday's results et back - I started to dislike the room and this bed, but Gary brought my colouring books, music on a usb for me to set up my new MP3 player he gave me for my next chemo treatment (which is cancelled until further notice) so I loaded it up, played some Dolly Parton and began colouring in. I managed to escape. 

I also found out, after offering the nurses chocolates unsuccessfully, that there is a veranda attached to the ward, so when Gary came back from his non visiting hour period, we went out and enjoyed the warm fresh air. I wouldn’t have been well enough to do it anyway until today, but I did think I’d been missing out the entire few days not knowing about this.

 It will be my special outing for tomorrow! Sez my angel and Gary spent dinner with me and headed off so I could settle in for the night. Crazy Saturday Night plans!

I did ask Dr Arthur about the upcoming SMH half marathon that I was running in 2 weeks’ time, after ab bit of umming and arrrghhing, he said ask respiratory Dr and take their judgement. I don’t think there is much chance, but perhaps if I promise to not challenge myself. Then again, as I said to Dr Arthur, we are talking about me! Challenge is the only way I know that makes me feel good about myself..

April 29th – Blood pressure Alert!

So the temperature is all under control, but next is project lower blood pressure! Everyone was in a frenzy about my blood pressure, constant monitoring, 2 different machines and both arms, then a manual machine which all showed BP of in the 90’s. Drink more water! They said to me, I tried and must have pee’d 5 times that night, but managed to have it come up to 110 in the morning and my Nurse Lucie, actually nearly high fived me she was so excited. She did actually do a little dance when she checked back in to make sure it was still level. Amazing nurse. They all are amazing.

April 27th – 38.2 temperature – next stop Emergency Mr Cab Driver!

I hit the gym at 745am, lasted 13 lunges before I went into a fit of coughing. Ended up heading downstairs and doing some machine leg work for an hour. All I could cope with. I headed home ready for a day of Quarterly Business Reviews for work where I would stand up and do my presentation I’d spend 1.5 days and lots of caffeine completing. When I got home gary pestered me for 15 minutes “check your temperature” sure sure but it will be fine. 38.2 was on the screen after the beep and I had to google the ‘go to hospital’ figure again because I had in my head – surely 40 is the bad figure not 38 – but I rang the Northern Cancer institute and she advised go to hospital. So I did! In a cab 15 minutes later!

When I got there they admitted me immediately under category 2, straight into a bed with loads of suction pads taking all my vitals, I had a temp of 37.9 then, resting heart rate of 122, oxygen below 90 so I went onto oxygen tube and liquids/antibiotics in my portacath. Bloods and cultures taken (cultures I found out are those little germs that grow in science labs that are living in your blood). Don’t know what results look like yet, I imagine a few little Mez creatures roaming around the blood lab in the hospital. I hope they break out and start a colony.

I felt pretty crap, moved to the burns unit as no beds in Haematology ward, and stayed overnight. 5 Dr visits in a few hours had me being moved to the Respiratory ward and a bronchoscopy booked in for Friday morning. Followed by results of that determining the rest. But I knew another night or two would be the immediate diagnosis.

A viral swab taken from through my nose and pushed down my throat, meant I was in isolation until they knew the results. This is to protect everyone coming into the room in case I had some flu virus I’m sharing with all the healthy people around me.

fitness training disasters

April 17^th 2016 - SMH training run disaster

Thinking this was a good idea, I went for a 7km run around darling harbour/circular quay. Looking down at my Garmin I realised I had never run so slow in my entire life. I actually thought of jumping into the harbour and ending it all it was so painful, but I thought that beating cancer, surviving chemotherapy and all the people who die from cancer were way more important than my pace. I kept going, I thought of my #teammez teammates who have signed up to the half marathon and I pushed through.

Just saying…..I paid for it by sleeping ALL afternoon with chills and needed hot soup. I won’t do it again.

April 20^th 2016 – Crying at the Gym

Today I realised with help from husband and my PT trainer that I need to settle down and step back. Im torturing my body enough with chemicals and 2 doses ago I realised that I felt worse than ever and that my time of juggling everything successfully or what I tell myself is successfully, perhaps is over. O V E R. 

I thought perhaps its just autumn chills and fighting colds. My immune system blood results are ok for a chemotherapy patient, but my body feels like it is shutting down, day by day. I feel about 50% ability to function with pain in my muscles and bones, sleep deprivation or at least broken sleep not good rest, and I never nap during the day or outside normal bedtime hours. Something I remember having suggested to me when I need it but didn’t feel any better when I tried, but now I realise with 4 chemo doses to go, I am getting worse.

This morning I cried at the gym after a 10 squat set with my PT Trainer, Sun bless her knows my body so well and has adapted my every session individually so by now she knows my facial expressions and how to get me through one hour and when to do core instead of cardio, or weights instead of boxing, or when to decrease the weight on those damn kettle bells (luckily this morning she removed the kettle bells altogether and I had no weight), she is my angel right now. But this morning even she couldn’t stop the water works. The reason was tension in my body, frustration with not being as capable as ever before, and feeling like I let her down with my decline in fitness. Stupid I realise, but I value fitness so much and besides my husband’s emotional support, Sun has kept me going since January.

That’s not the worst thing I guess that happened, there was a gigantic huntsman on the gym wall that made even my hard-shelled tough javelin throwing South Korean personal trainer couldn’t go near. We both thought death was the only option. I’m talking about the spider of course, although I did contemplate my own after squat number 3, 1 minute into an hour session.