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.