I miss my hair

Oh look - my hair! Tessie and I waiting for my MRI appointment in the waiting room - everyone thought we were out drinking in Fitzroy by the comments on Facebook.

I find myself pining for my hair - especially on these hot days. Always wearing a head covering is too hot, even the light cotton ones. I miss my eyebrows and eyelashes, I really thought I would keep them, but they fell out completely with the second last dose.

1year ago!

Santa didn't bring me any hair like I asked. It seems 1 step forward 2 steps back with it. My friar tuck hair style has gotten thicker, but the top which grew back first, seems to have been killed off with the 2nd drug.

But my eyes aren't weeping so much as before, there's some progress in the right direction.

My sister and nephew headed home back to Brisbane - it's always a little sad to see my family go back home after spending time together. Mum and Dad still here until Wednesday.

With my fat feet getting me down, the radiation side effects looming and surgery booked for 4 March, I know I have a way to go. I heard these lyrics and thought they were appropriate for the next 6 months for me.....

Fight Song

Like a small boat
On the ocean
Sending big waves Into motion
Just like how a single word
Can make a heart open
I might only have one match
But I can make an explosion
And all those things I didn't say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time
This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
(Starting right now) I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
'Cause I've still got a lot of fight left in me


Read more: Rachel Platten - Fight Song Lyrics | MetroLyrics

Merry Christmas

Merry Christmas everyone, I hope you hugged and held your loved ones that little bit tighter and a little bit longer - I know I did :)

I hope you had a wonderful Christmas with your family and friends. This Christmas was more special for me this year with the great Christmas present of no tumours. But I also really wanted a 'real' Christmas tree for the first time. So I bought one against John's better judgement. The smell in our house is divine!!!

It was a lovely Christmas with 19 of my nearest and dearest relatives at our house. john spent 3 days straight preparing the entertainment area and cleaning the house. Everyone brought a plate and we used throw away plates. I set out a timetable on the day that we worked to and I didn't need to manage. Mum and my sister Leanne helped while Zi put the meat on to cook sitting on a stool.

I managed to whip up a cake for the season too.


It was a great day, and we are still eating sweets from the day, so I won't be getting those fluid kilos off too quickly. I told the radiotherapy nurses today I might be a little rounder. They have measured my treatment based on my circumference and need to adjust the measurements of the machine if I lose or gain weight. They thought that was funny after I gave them my Donald Trump'(new name for my wig) for safe keeping.

They gave me a Christmas present on Christmas Eve which was lovely - a little Christmas candle. They are very caring and considerate nurses and radiologists. I felt like I should be giving them something as they are saving my life!!!

Due to my fat feet, shortness of breath and no energy, I didn't get to Carols by Candle light or visiting some lights this year. Oh well, I don't think the kids were devastated about it.

My edema has not settled down despite what I'm trying. I might have to seriously think about some fat shoes to wear to fit my fat feet. This Friday marks 6 weeks since chemo - and still the side effects linger!!! :(

Radiotherapy week 1

So I just hit my first milestone of 1 week of radio and 5 to go. It was a little nerve wracking but made easy with my friend, Heidi accompanying me offering plenty of distraction and support. It does make a huge difference when someone is there with you, as independent as I like to think I am. My appointment yesterday, I dragged john and the kids with me. The radiation team are brilliant and took the kids through to show them where I go and explain what happens before whisking them out as they de robed me on the table. I was holding back tears as the reality of my kids seeing it sunk in. Kids always make everything that much more emotional as your connection to them and the importance of you as a mother is in their little lives.

Anyway, after radio the nurse meets with you to check on you. I casually mentioned labored breathing, the swelling of feet and legs and rapid weight gain - which put me in hospital!!!! I feel well so it seemed like a lot of fuss. The kids were dropped off to Heidi's after school with nothing but their uniforms, and ended up sleeping there as John didn't finish until midnight with me when the doctors finally had a plan.

It was precautionary as Docetaxol can damage your heart. So they were looking for clots possibly causing my leg swelling. The good news is that they found nothing sinister, I'm yet to do a 'echo' of my heart on the 29th which specifically checks the heart valves. It was funny though, in emergency chilling out and minding my own business and they called a code alert on me. I thought they had the wrong cubicle but it was because my blood pressure got down to 85. They asked if I was dizzy - no nothing. So they started tipping my Bed up and doctors kept coming and a saline drip started. Tamika, the nurse did apologies for doing it afterwards, but it's procedure.

i was taken to a ward about 2am, when my blood pressure got to 100, after arriving at ER about 6pm.

The wards are lovely at Olivia Newton John as well. A nurse is stationed in your room with 3 other beds. I had 3 blokes with me. They were characters. I overheard 1 of them telling his wife "a girl came in my room last night"!! He was a bit of a joker and had everyone in stitches. 1 of them I knew had advanced stages of cancer throughout his liver and kidneys from a melanoma that was removed 8 months before. He was hopeful and we discussed some of the more miraculous stories with the latest immunotherapy treatments. i felt like a fraud taking up a hospital bed when I felt perfectly fine just lying around amongst these guys.

But again, giving me another opportunity to remain grateful and lucky.

So at home, with my Fat feet back on diuretics, because they said so and occasional tight chest.

Another opportunity to feel so lucky to have wonderful supporting friends with text messages cheering me on, swelling reduction product ideas, free babysitting of both my children, and me and a Home cooked meal Of yummy cacciatore to come home to from hospital from Leanne and pizza from Heidi.

Now a week of Christmas preparation, Luckily I did most of my shopping online already. Have a great Christmas preparation week. Xx

FF

So I'm coming up to 3 weeks from last chemo, and I'm glad that there arent any more sessions to go. The side effects have obviously built up over the 4 applications of Docetaxel.

I have Fat Feet, my new FF!

Jana calls them baby feet (like little baby chubby feet) - she's right on the money with that description. I have edema over most of my body, my knees are unrecognisable and I will soon be wearing John's tracksuit pants to work with thongs. My upper body doesnt seem as badly effected - so far. I cant fit into my skinny jeans and tire out very quickly. Now there is a dichotomy - they say that exercise helps move the fluid through your body, I mean a good sweaty workout!!! I cant even get my ankle to bend with the amount of fluid in it, also my heart starts hurting and I cant breathe, how am I supposed to do a sweaty high impact workout Michelle Bridges style??? I feel like the actor in Big Mumma's House at the moment.



All of the Oncologists must practice that "that's not a side-effect" shake of the head and changing the subject with patients when they go to University, as they all deny that edema is a side effect of this drug, even though its all over the internet. All they care about is treating the cancer rather than the side effects, unless the side effect impacts the drug treating the cancer. Anywayz.....I should be more grateful shouldnt I!!!

My finger and toe nails have survived, although very sore at the moment. They look bruised and have some ridges, otherwise not too bad.

Anyone interested in what the drug does, I have included a short paragraph below. They have attached the cancer with 3 different drugs, attacking it differently. This was the final drug:

GENERIC NAME: docetaxel

BRAND NAME: Taxotere, Docefrez

DRUG CLASS AND MECHANISM: Docetaxel is a drug that is used primarily for treating breast cancer. Docetaxel works by attacking cancer cells. Every cell in the body contains a supporting structure (almost like a skeleton) called the microtubular network. If this "skeleton" is changed or damaged, the cell can't grow or reproduce. Docetaxel makes the "skeleton" in cancer cells unnaturally stiff, so that these cells can no longer grow.

I always said I'd never have tattoos or plastic surgery in my life, but now have some little tattoos!

I went to the Olivia Newton John Cancer Wellness Centre for my planning appointment for radiotherapy. What a beautiful place by the way. It doesnt feel like a hospital at all, except for the occasional dr gown you see. Its all timber floorboards and inspirational artwork on the walls. Waiting rooms are like hotel lobbys. I had another CT scan and they tattooed the position of my radiotherapy points. They are only little dots so the machine knows where to follow throughout the daily treatment. They also made a mould for my back and shoulders for exact positioning every time on the bed. It all seems very high tech. I start this on the 14 December for 6 weeks over the Christmas break as well. Then, surgery is most likely going to be in March - 1st or 2nd week, waiting for confirmation from the Plastic surgeon and my breast surgeon.

The kids are excited for me to be normal again. Jana wrote me a letter saying she is looking forward to us being a normal family again - with my hair growing back and me not being sick every 3 weeks. Hopefully there will be very little side effects of the radiotherapy.

I'm now on a duretic to reduce the fluid in my system. I will be having a blood test to make sure its not effecting my kidneys too much in a week. In the meantime, I will try and stay home as much as possible so I dont have to roll around the place, until they start to work. Fingers crossed. :)