Still here

well... who would have thought a global pandemic would give me time to sit and think.
This week I was supposed to be in Vietnam, training their senior officials in the role of sector marshal. Then a side trip home to do a parkrun in Singapore. Alas, everything is shut, locked down, isolation... no travelling. Thanks Covid-19.
It is my 10 year cancerversary..and instead of living life to the max giving cancer the big FU... I have been bunkered down following government guidelines, not venturing out except to hunt for food and essentials, etc. preparing classes for not going back to school, but teaching remotely.
Interesting times.
Update with work...changed schools, so incredibly happy that I did. Amazing colleagues, much shorter drive and teaching what I love textiles art and studio art at VCE. And working full time.
I have taken up running, doing parkruns every Saturday (they have ceased as well) and been able to reduce my opioids to nothing... I feel awake.
I am in a flat spot this week, last week we had student free days to prepare for remote teaching

And I was buzzing, in my happy place, preparing materials and classes, interacting with team mates...

Then this week...I started, then I flopped...just thinking about the past ten years..boy they have flown. And 7 years with advanced breast cancer... so beating the numbers at the moment. But just flat, probably a bit of everything that’s going on, as well as my personal headspace. 

Since I last wrote I have had a second primary breast cancer...triple negative grade 3 stage 3...so off  came lefty... it was actually like a relief..feeling much more balanced. The CT scan after showed everything clear and stable, but to be sure I had a PET scan...same result, that was in Nov - mastectomy and December the PET scan. So also stopped Xeloda then, as the liver Mets had gone.

Since then I have had one scan, 2018, and it’s all good...still stable no progression.

Started working full time again in 2019. Best decision I ever made.

Tomorrow is my parkrun anniversary 4/4/2015, and apart from the second primary, I have had no progression to my ABC since I started running, now I’m too scared to stop...

So why so flat? Being inside, isolated, so digitally connected but so alone, wanting to curl up and sleep... going to force myself to run tomorrow...hope the endorphins kick in.

Oops

It has been a while... And just finding time to navel gaze at this shit that will kill me is not worth my while.
So I am back, down on the peninsula with some old mates and new. Mets or ABC getaway time.
I have tried to post in between,  however blogger is not playing nicely.,so,before I get too in depth let's see if it works.

ABC Getaway

Our 2nd get together... A special bunch. We have lost 3 since April, sad reality of our situation.
Some are looking fab, kicking butt, others not so much. So I was quite teary and emotional once again..
Pain will do that...it is the brain of most of our lives.
Bonds are being strengthened , laughs tears, and enjoying the time we have.

The results are nearly in, sort of

So I had the CT a few Fridays ago, essentially to check on how the Xeloda has been working, as I have been having some dizziness and more pelvis/sacrum/hip joint pain (where my bone mets are). When I went for my monthly jab I got the results...They are a mixed bag.
Yay Xeloda is doing its job well (I am on 3 each day) the larger of the spots on my liver was classed as stable just under 1cm still, and the two smaller ones are now barely visible. The bone mets on my pelvis are stable, have shown no change. So that is the really good news... I do wonder as I have settled in with Xeloda now whether the dose should be increased.
However, they did find a few spots on my brain, which they suspect could be mets, and recommended an MRI a to confirm or deny! My onc wasn't too phased about the brain ones, except for my dizziness, I was happy to reassess next month if my dizziness continues (my thinking is I am pretty sure I had a good dose of flu, and have had low wcc and neutrophils and picked up everything this winter...still filled with snot, so this could be adding to my unsteadiness) . I will have the MRI just before my next xgeva jab.
So...still in limbo.... Fatigue is nuts, but it's the end of term and everyone is tired.... a week to go.
My rock is having trouble coming to terms with it all, and has put his head in the sand a bit :( but we will get there...
The past week has been dismal, but the weather is looking up, and this weekend I head to Sandown for the V8s... hope I make it through... should be there today, but I am resting, taking it easy... getting my energy levels up.

Post from Sunday 29 August

So, it's been a few months since the blip on my liver showed up and I was put on Xeloda. I have been getting more pain in my hips recently,  and so last month at the xgeva jab the onc told me to get a CT done, close to the next xgeva. He wanted it on the same day, but as I go straight from work it makes it difficult.
So on Friday I had it done...I was there for a while. I must have lost weight, or they are making bigger gowns. I had my blood test on Thursday,  so they were concerned they got an artery rather than a vein, as I was bleeding back into the cannula, but all was good, the anti inflammatory stuff makes it bleed more.
The injection site has been itchy, but will hopefully calm down. My veins have dine remarkably well considering what they have been through.
I feel like I am in limbo until I get the results. So tomorrow is a late night at work then Tuesday work in the morning and Cabrini in the arvo.
So very tired, have picked up one thing after another this winter. Grrrr.
Ah well one foot in front of the other...and we shall get there...

Life

Ahhh like life, a ball if yarn can be long or short, tangled or smooth, thick or thin, or more likely a combination... Sometimes you wonder how you will ever get it untangled, and then, by the end of it, something beautiful has been created.

https://www.polaroidblipfoto.com/entry/2086047724473421159

The double edged sword!

When I had chemo in 2010, I put on so much weight, with the dexmethasone and chemo and feeling sad and sorry for myself...I also had swelling of my hands, and could no longer wear my wedding ring... Which was upsetting, but other things were going on... And so for the next 5 years my hands were without rings. Every now and then I would try it on, usually when going somewhere special and glamming up for the night... But to no avail, not even able to get it over my knuckles. Then if I did, it was mighty uncomfortable.

Since last October I have been making a concerted effort to lose weight through exercise and portion control. I have now lost around 15kilos since my heaviest of 110kgs. (I may well have gotten heavier, but I was too sad to look). I got a garmin Vivofit for my birthday, and it was on and happening. I was walking lots and feeling healthy!

Then in April the weight was dropping off, and I got the news of the liver met making itself at home... Was the weightloss from my efforts or a side product of liver mets? Still the weight is falling... Hubby decides to enjoy a bit of chocolate each evening... and knowing that is my weakness I am not able to say no. So I wonder if the weightloss will stop... After all since having children I only have to look at chocolate to put back on anything I managed to lose...hmmmmm double edged sword.

So, now heading into the end of the third week of this lurgy, which has stopped me from doing much of anything, I felt sure the weightloss will stop... Specially with the extra evening chocolate treats!!

But the scales are disagreeing, and in fact for the first time in about 10 years or more the numbers are 90.5kg. No sure what is contributing...and I feel it could be a bit of everything... IUD out, metabolism back on track, portion control, liver mets, Xeloda side effects. On the positive side my nails are getting long and strong, they have been a bit of an indicator as to my inside health, tending to flake and break whenever things are going badly inside... 

So today, still a bleagh day lurgy wise... Looking at my chest of drawers, I thought I would try on my wedding ring... And voila, it fitted, I have been wearing it all day, and I don't even notice it... Yay.

So sick bleagh

I have been so healthy since my stage IV dx that getting sick has hit me hard. At least I can get better from this bit of sick.
I seem to have made it through the worst.  Two weeks with no voice now, chest xray came back clear, blood test showed low neutrophils,  well if she had listened to me, or checked recent blood work she would know they were actually higher than the had been.
A week on antibiotics,  a week off work and a week out on the couch during my holidays. Still coughing up a rattly lung...but not sleeping 24/7. Started an off week from Xeloda last Thursday so no doubt that is helping with energy levels too.
Back for xgeva shot on Tuesday, and joy, more blood work. Hopefully will get some other stuff done too. I have been studying, doing app design and train the trainer units with Adobe. Hoping next week will be healthier. And weight will stabilise.

Keeping fit

Today I shuffled most of the 5km Parkrun.. Only walking 2 x 5 minute breaks in the 50 minutes or so it took. Pretty chuffed with that improvement.

Angels in my heart

Just after I was diagnosed with the brand new liver met... We had a weekend away...when I say we, a group of 24 stage IV breast cancer girls who had met on a facebook support group got together for an amazing few days down on the Peninsula. We had 3 villas, with 6 - 10 in each. I shared a room with an awesome chick from FNQ, and the others in our villa were pretty fabulous too. Well ok everyone was great, but I really enjoyed going to bed early, getting up and chatting in PJs...getting breakfast with a pocket full of pills to take as well... Plenty of laughs, chats, tears and sharing how we got to where we are....

Sadly today we lost the second member of our group of special friends. It was always going to be tricky, after all we all know what our short term prognosis is...that there is no long term prognosis... Would I change getting to know these amazing ladies so that I don't have to shed a few tears... Definitely not!! After all, no one gets out of here alive, why would I give up on living and enjoying life with friends I have and will make, for fear of losing them first. 

It is sad, but I cherish the laughs we had, the wonderful people I got to know on a different level to most people... Love you lots Corinna and Kellie, may you shine brightly with the stars.

The story continues...

I often wonder if anyone actually reads my ramblings. Well trying to put it the claim for my prosthesis here at Medicare.  One of the big ones in the southeast burbs, very multicultural which I love. Someone clearly thought it would be a good idea to combine Centrelink and Medicare, but for those if us with immune issues it just means more germs..screaming children,  hacking coughs and long frustrating waits.
I love all the signs around the place asking phones to be turned off, and I was going to leave mine in my bag. As I looked around nearly every one is talking or tapping on their phones. So meh, so will I!
Took a while, finally got processed, then off again to get crutches for the boy.

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.

Day 2

What does someone who has metastatic breast cancer look like? 

Some look absolutely normal....like me

October

October for me is: birthdays, anniversary, springtime, daylight savings and Breast Cancer Awareness month. 
I am sure most of you are aware that you need to check your boobies... Man bobbies too...every month and get any CHANGES checked. This doesn't just mean lumps, but any changes.... I didn't have any lumps, I thought it was just hormonal swelling and a blocked milk duct after having breast fed 3 children...it wasn't... It was cancer, and in 2010 I lost one of the girls. It had also spread to my lymph nodes. As well as DCIS I had 7 invasive tumours which did not even show up on the mammogram, ultrasound and stereo core biopsy. I did everything I was supposed to do... 6 months of chemo and over 30 doses of radiation to try and make sure I got rid of the sucker.
4 years ago I was bald and the chemo made me even fatter... Today I am living each day...you only get one chance at this, make each day count.