Passing and failing

Arghhhhhh

A month since starting Xeloda, 4 tabs , 14 days on 7 days off.

Feeling incredibly tired, sleepy, yet not able to sleep, but when I do I am a log.

Only side affects have been increased nausea and the start of mouth ulcers.

But when I went in for my xgeva / denosumub shot yesterday I found out I had "failed my bloods" my white blood cells and neutrophils were both lower than they should be.

Onc ordered an urgent blood test to see is they had fallen further, and he wasn't happy. So reducing to 3 a day, and shortening the cycle I am on....

As I sit here....in my year 9 class all I can hear is snuffling.... Argh... 

Germs everywhere, wearing gloves and wiping with antibacterial wipes.

Here we go

The bone scan was stable..yay, but the CT showed a 9mm lesion in my liver! Well Fuck that!
On to chemo, at least it's an oral one. Omg, how am I going to tell Michael?

Scanxiety

Ahhh scanxiety at its best! Last month when I had my denosumab/xgeva shot I had two weeks of extreme bone pain. it was a different to normal pain that just about knocked me out! I was not even able to drink without feeling sick for days after. I was much more nauseous, and returned to regularly taking maxolon or ondensatron (sp?) 

However, as I was heading towards 8 days off work on long service leave to play with race cars I tried to ignore it... just scoffing down endone each evening.

By the time I was on leave the pain was manageable even with the long days trackside, although sleep was hard (most of my pain is in my hips/pelvis). Alcohol was still not good, and I preferred to just drink water, after having felt seedy for way longer than I should have after a couple of after race drinks.

First day back from leave was also my next denosumab/xgeva shot, and I detailed the increased pain. I see my onc each injection day as I have it at Cabrinin Day Oncology. So he has upped my fentanyl patch and ordered bone and CT scans which I had yesterday.

Curiously the scan day began normally, I had the CT first, then went and had the nuclear med injected into the canula left in my arm. They didn't say much with the CT, but then neither did I. Everything moved smoothly. I have clearly lost weight as the attractive gown closed easily this year (15kgs lighter)

My Friday was supposed to be wonderful, spending time with my sister who has driven down from Queensland for a week, we had planned a day of manicures and fun... instead she drove me back to the afternoon session for the bone scan!

I went to mum's for lunch with her and sister (we had planned a much different day) then returned for my bone scan. There were obviously things that they saw... and by the time my head was out of the first one and I could see the screen, I knew the areas in my pelvis etc were showing lots of lights. They also did extra scans of my chest and then I went in for a 3D one, detailed bone scan with overlaid CT "to try and get to the bottom of the lower back/pelvis pain".

It ended up with the doctor coming out to see me, and say that she was happy that it was mostly stable, although there were still a few spots she wanted to investigate and compare to the last one...

This has left me in a very confused state... my sister had accompanied me for the first time... she heard stable and was over the moon... I wondered why the doctor was telling me this... what weren't they telling me? did they want me to relax over the weekend and not worry...

Ahhhhhh as I said initially scanxiety (which my sister was impressed was even a word....LOL) not happy regardless of the result... and even with a stronger patch... I have been teary at work and in heaps of pain... arghhhhh... so now... as the pain is breaking through again, off for more endone, panadol osteo and sleep.

End of year

Hating not being able to celebrate... Not feeling part of the "team"... Over it at the moment.. Just want to be at home and hug my babies.
What kind of leadership team forces people to attend a function... And makes them pay for it... and punishes those who don't attend by giving them essentially detention... Lol
That's correct the bullies rule here! Argh

I fucking hate cancer

As well as taking my life, it is taking my career. When I was diagnosed with EBC in 2010 I was a leading teacher in a position I had worked hard to develop in a new school...I was committed, hard working, loved my job, was even thinking that assistant principal could be in my 5 year plan. I worked with colleagues at an international level, participated in delivering conference papers at national, state and subject based areas in the use of ICT in schools. I loved working hard with a great team! Even through my EBC I continued to work, encourage others to try new ways of teaching and learning... By the end of 2011 I my role in Teaching and Learning had changed from eLearning to Pedagogical Development. I was so excited to take on this new big challenge...

Then the walls started to crumble in 2012...new principal..and new assistant team... Who came in stripped my role back to ICT and added ICT management, which was never part of my role, and were generally rude and aggressive towards me. I am a team player, so took on the job, and got the technicians on track...they felt they had real leadership for the first time. Did my best teaching across campuses and developing Teaching and Learning strategies, trying to implement a coaching program with no support. On top of this they brought in someone else to develop the web presence I had been working on developing for 3 years....I was treated like I was insignificant and knew nothing. I was stressed and pained, and looking back this was when my cancer was spreading...as I was being spread thinly. I was hurting physically and mentally...didn't have a campus to call home, felt like I didn't have any support from colleagues... Then the principal decided we didn't need an eLearning position, as I had done what I needed to do.... Ummmmm....but...I tried to escape... Went for other positions...closer to home...I was so tired.. Could not work out why... I usually worked at night til 11 or 12 but I just couldn't anymore.

So 2013, teaching across 3 campuses, full load, stressed, other stuff going on at the school, things totally snowball...shit classes...year 10 boys who are just waiting to go to jail (ey have since been expelled from the senior campus) ... And BANG... Stage IV bone mets diagnosis... Fuck fuck fuck....

Put on my big girl pants, work through this... Look for positions closer to home... Nothing...

Bleagh...

2014 rolls on, and third base campus in 3 years, new program, new position as being an expert teacher you have to take on extra roles, working with Mentone girls, ohhh btw cancer has progressed, into sacrum and more where it had been in hips... More rads.... No more possible to hips now :( pain is being managed...

Classes are working well, feeling well supported at the little campus... I can do this...

Bang....Michael gets retrenched.... Arghhhhh I am the one who wants to stay home and bake cookies...can't do this yet!

He gets a job the next week...hates it...leaves

So playing the waiting game for the right job to come along!

Then I get sent a message that they will be putting up a new leading teacher position... Digital Technologies...the only thing different to my old leading teacher role? The name....and they want one of the other teachers to follow up on stuff he is doing in his classes with iTunes U... Ummmm...feeling totally out of the loop...hurt and angry....worst is I don't think I can even think about applying for it because I have this fucking cancer shit!!!! I know the principal hates me... So no going there... He has barely spoken to me since my dx!

I have had my fentanyl increased... I am teary, angry, and over that my plans have flown out the window... And still in pain!

If I wasn't so tired I would jump at this, but work life balance...

I'm angry that I am angry...

Got to find my inner peace so I can finish this year, and be happy with the life I have left to me.

Got to be the strong one

It has been a crazy busy weekend, Friday evening my eldest's Year 12 Graduation mass and dinner, Saturday afternoon at a friend's clothes shopping party, and Sunday my 2nd son's 16th birthday, with a picnic in the park.

On Friday I had a few things playing on my mind, it was day 3 of my patch, so I was feeling some pain in my hips and a couple of the girls I chat with on the ABC forum are coming to their end. I have met one of them a few times face to face, and she always looks so bright and bubbly, and has been told 2-3 weeks. And, of course, all I could think of when I looked at the boys so handsome in their suits, hubby and son, and that they would probably wear them at my funeral... So I was a bit down... When hubby asked what was up I stupidly told him... Forgetting that I have to be the strong one all the time... He walked away... I just wanted a hug... Grrrrr.... We are ok now, but I know I can only let go here...or with the ABC girls. I thought after I was able to hug him when he had his melt down on daffodil day, that he would hug me, and we could cry together... That really hurt... It is really hard keeping things locked in. Thank goodness for the forums.

Hoping to get back to Bikram soon, the head as well as the body needs it!

Good days....

Good days.... It's really nice to string a few together...last weekend I was sector 8, leading my little team on what turned out to be  a very quiet V8 Supercars event!
Couldn't manage the 3 days, but 2 worked well for me...still crazy tired though!
Today I finally get a chance to put finger to touchscreen and tap out some thoughts!
Sitting outside the kids school, waiting for Will to finish his final VCE exam.
They are looking after me at school too, which is nice..so getting time to finish off things.
And the sun is shining, it's a beautiful day.