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.

That time of the year...

Hmmm, April first 4 years ago I got the news that was to change my life, and that of my family as well. I found out how small my real posse was, and rely much more on my inner strength and my family.
April 1, 2 years ago my dad passed away from his battle with melanoma. Although we had made our peace after not speaking for many years it was frustrating to have to clean up his estate although most of that fell to my brother. I know I don't want to leave that kind of mess for my family...

So April is a time of testing... Monday was my mammogram, Tuesday was the skin check, Thursday is a bonescan scan to check on the increased pain....next week back to Cabrini for denosumab, so today is also blood test, with a queue a mile long.

So, with the mammo they take the breast, put it on the cold metal plate, with the xray plate underneath and the plastic shelf squishes the boob as flat at possible. That is the pic of my boob in the background. They do a top squish and a side squish... When I told the mammographer that the 7 invasive tumours were not seen on on the mammo or ultrasound in 2010, not even with the stereo core biopsy, it was only when the breast was removed....she was a bit taken aback...

Then the ultrasound... Jell everywhere, the sonographer feels around the scar, the lymph nodes (both where they were under my right arm....just in case, as well as around the left arm, as well as the breast...not invasive or painful, just confusing to try and interpret the fuzz on the screen...

So.... The blood test...my veins are starting to show some wear and tear, and the young girl who tried to take my blood from my elbow vein was struggling.... But this time I spoke up before fainting! And the more experienced vampire tried....this time from my hand...didn't get much blood...but enough for the FBE and EUC tests. And now I have a big ouchie bruise on my wrist bone.

Tomorrow the bone scan.

Here we are again

So, in for my denosumab, it's been a shit 4 weeks...the migraines are hanging around, and have even had to have maxalon to stem the nausea.
The physio has been working on my neck and hips...magic...I can walk without limp, and can turn my head woot! Still no relief from migraines though.
Tell the nurse about the migraines, then the onc, and the ball is now rolling on an urgent CT scan..and a drip of my least favourite drug in the world...dexamethasone.
So now just waiting to go up for the scan!

Purple is for cyto toxic.... Oh joy, and that goes into my body!!!

4 weeks goes so fast

Here I am, back at cabrini day oncology, for my 4 weekly denosumab jab! Miserable day outside, so peaceful in here, waiting to go in.
This month I can really feel the muscle pain from the rads. Feeling mega tired, but trying to work through it. Been walking more, and perhaps that has been causing my hip pain. I noticed yesterday that the painful area.of.my hip was also hot! Hmmmm.
Well, should have been a quick jab and out...but I wanted to see the onc, to see what he thought about the pain and heat.

my files and the nurse getting the denosumab


So off for an xray of my hip and pelvis....allgood, no evidence of further metastases, as i found  out the next day. i can start physio treatment to hopefully alleviate the muscle pain
!

Ups and downs

IMy last post I felt had to be upbeat, as I wanted th focus on the positive, even though I was feeling bleagh!
It had been a crazy busy term at work. With my room being moved, I felt I was going backwards more than forwards, with stuff having to be moved sooner than anticipated, and the old room being knocked down arghhh! Chaos reigned supreme!
I was moving 40 years of stuff, trolley by trolley, lifting more than I should, totally whacked! Then I had a literal run in with a student who ran into my cancer stricken arm, causing extreme pain! Many tears, more endone and panadol osteo than I had taken in ages.
So sore hips, arms, overwork, feeling unsupported, run down, end of term, I was a mess.
Thankfully the term ended, and my clever sisters booked a weekend on Bribie in Queensland! Just what I needed. Chilled, laughter, good food and drinks! Great memories!

I had been attempting the bikram 4x4 challenge and was doing well until my meltdown...so I let it go... But 1 day back from my weekend away and back at bikram. Felt awesome! And I even managed to briefly balance on both legs in standing bow. Whoot, as well as touching my head on the floor!
Feeling great only a few joint aches which have been massively improved with starting red krill with glucosamine!
On top of things, and tumour markers down to 23 all good! Brilliant, just had my denosumab shot, everything is going well. Life is good.