Friday

Ahh the weekend... I made it.... There were times this week I did wonder.... Nearly falling asleep driving home is not good...so very weary. I stopped wearing the fentanyl patch last week, and figured I could live with the pain if I wasn't so tired.... It didn't seem to make much difference.... I seem to go through waves of tiredness to extreme tiredness.... I even started to fall asleep at the theatre last week... It was hard work to stay awake...and I wanted to stay awake, the production of Wicked was wonderful... Made better being there with a few of my favourite people...

So...the pain killers have made it more tricky to get the "movement" balance right...it seems to go from one extreme...where I put on a kilo each day... To the other, where I can't be far from a toilet...arghhhh. But the weight loss is slower....I try to get through the tiredness to get out on the walks in the evening, which should help... But not as often as I would like....

Sadly another of the support group passed away this week...this disease is seriously fucked up... She wasn't even 40. So many of the women are in their 30s with young children... Arghhhh.

I am getting to the point where I have to think about the next step...changing the hours I work...still full time...but it is getting hard, I am tired and grumpy, I get home and fall asleep....I rely on Michael to do most of the cooking  and cleaning.... I am so whacked...

Time for those decisions later...next term...after the year 12s finish...yes I keep putting it off...if I do something, cut back on hours, it means I admit I'm sick, and I am not going to get better.... But then how do I want to spend my last years? Working for the man with all his stresses, or creating beautiful memories for my children friends and family?

This weekend sees some memories about to be created with my wonderful sister down in Melbourne, and the family getting together....

Patch is on....

The tough decisions can wait, at least for this weekend.

Rest in peace angels.

Update

Well, this weekend I have missed out on a race meeting...due to being tired, and having a big meeting next weekend, so... Taking it easy.

Last week was rads every day... And work, and extra driving... Yes I know I am doing too much... But... Ok I have no excuse...so relaxing this weekend.

Pain has still been an issue... I ended up getting some fentanyl patches which I used last weekend to see me through the field of women... And took it off Sunday night before driving around. My beautiful sister was down from Queensland, and she drove me around on Friday, then we trained it and Michael drove over the weekend.

Wednesday was an extra long work day... Waking with a migraine did not help... So I had Panadol osteo 6 hourly and ibuprofen 8 hourly, got it into the background a bit.... It was the Open night at school, so I eventually went home after 9pm and popped a patch on and had an endone as well... 

Thursday I couldn't believe I woke up with an even bigger migraine...this time including nausea and spewing... Arghhh. Hoping it is the tension headaches we put the last lot down to....it hung around most of the day... I did take Thursday off, and Michael drove me around, got some nurofen migraine stuff and maxolan to reduce nausea... It subsided, I slept most of the day... 

Saw the breast surgeon as the nurse wanted me to come back after I was put on antibiotics when the stitches were taken out... Still a bit red and achy around the under arm, but he was happy it was heading in the right direction.

In the evening was the long awaited Talent Quest... With my son in the rafters on the lights and my lovely daughter part of a dance team... Brilliant night, glad I had the sleep.

Friday, woke with the migraine again... Can't believe this... But my neck is super stiff, so continued with the analgesics ... It subsided a bit... Did the work thing, then home to endone.

Over the weekend I can feel the migraine in the background, but not full on... Drinking lots, having green tea, taking it easy, still getting out for a walk. The pain is still there in my hips... This is getting annoying... I see the rads onc tomorrow... And have my last rads session....

Tired, not so emotional, just wanting to feel better... The patch is good, I feel mentally focused, more so than with the endone, but needing the endone for the ongoing hip pain, particularly when lying down, so sleep is a bit of an issue! 

Well on we go...

Results are in.... I think

And what the result are is leaving me in limbo a bit...Well to say I don't know what the bone scan revealed is an understatement.... The mammo and ultrasound were both clear, however the physical exam on Monday revealed a painful lump under my scar area... Which he want to remove ASAP, after the bone scan results are in... Hmmmmm. This will be removed under a local.... This scares me more than a general... I would rather not know what is going on.....

Went into day oncology and was sent to the bed area... Nerves went on higher alert.... Is my management changing from just the jab every 4 weeks.... Why do I have to lie down? Panic mode, or just a full house?.... Seems it was misread info... Phew...

So get the jab... Then wait to see the locum onc... Where did she go???

Soooo finally... And the results??? Ohhh yeah there seems to be something going on... Definite issues with right hip ball joint and top of left hip, and sacrum. Well they didn't compare the scans to older scans... So ummm... Yeah the hips have been irradiated last year, but the sacrum.... Yep... That is new pain, and explains the nerve pain down the legs.

Elbow pain, probably tendinitis, as expected... It was hard to get, as it was the arm the radiation juice went into...LOL 

So I guess that means it has progressed... I am trying to play it down, and convince family and friends who know I was having a bone scan that it's all good, and just getting more radiation for pain management....

It at least means I wasn't imagining the pain... But bugger....

I did get offered morphine patches... Or oxy contin ... But you know, I will just live with it.... That whole quality of life... Not wanting to be fuzzier than I already am... And I can't imagine I would be able to drive with that....

So for now it's 2 Panadol osteo 3 times a day, 2 ibuprofen 3 times a day and endone, once I am at home.... So still only taking one at a time, but every 4 hours.... Still feel pain, but still feel able to function.

Want to do Bikram, but soooo tired....

For now.... At paintball celebrating my oldest child's 18th birthday....hoping to see many more milestones in their lives!

Me ... today

Today's prompt for the Photo a day challenge I play is "You" so I thought I would vent a bit here with the pic I have selected for that...
I want to be strong.... like the tree
I want my roots to be deep... like the tree
I want my arms to be wide.... like the tree
I want to be flexible, bending with the wind when I need to ...like the tree
I want to give back to my world.... like the tree
I want my seedlings to grow and flourish... like my tree
I want to provide shelter and comfort to those who need it.... like the redgum
I want to live a long long life like the redgum.... and when my time is done... to become part of the universe again
  I can work towards that.... regardless of time

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
!

Hmmmm....burns

Who knew....two weeks after the ourselves of rads I end up it burns on my belly...sad face ...thought at first it was sweat rash from Bikram...but as I never had that I the 9 months I  have been doing it ... Ding in...I worked out ...and confirmed with a chat with  friend who has had a fair bit of radiation... She reminded me not to use oils like vitamin E...which I had been using...

So hopefully, now I am treating it with better stuff it ill improve....so itchy. Yay for QV

Also incredibly tired...came home yesterday and slept for 2 hours...then did Zumba with my girl! Week and 2 days til hols...can't wait... Still too much pain...

End of the week

So this I guess will become my new normal....pain, the shadow of a limited future hanging over me...and tiredness. But still I smile... I have been asked why.... Well why not? I can't change the cards I have been dealt....I can however play a bloody good hand...

The rads, I was told would cause a flare up of pain in the affected bones, and then the pain would cease....so I am going through that pain thing at the moment...and looking forward to the relief that is coming....

Right now though, I am sitting in the car, in the rain, watching my firstborn as he finishes his shift at work...and smiling. He is so clever, and sensible, and looking forward to the Presentation Ball next weekend, so am I .... He will be so handsome, and his partner...long term girlfriend, will be beautiful. I am making the most of every special event I have...trying not to cry over the ones I may miss...but that is a long way off... Staying positive folks....

Looking forward to Bikram in the morning.

Axilla clearance

It's done. Feels more like deep muscle pain rather than surgery incision pain. The meds are doing their job. I notice the pain most when I do the creeping up the wall exercises. Looking forward to going home tomorrow and getting on the road to recovery. I know there will be lots of bumps, but I am feeling strong. And I have a brilliant support network.
The steristrips are off the mastectomy wound now. It looks amazingly good. Just have a waterproof pad over the part which was reopened to remove the rest of the lymph nodes. I am still waiting to wake up from this nightmare. Hmmm
It was nice not having the compression pads on my legs after this surgery, however, I have noticed the veins go my left leg popping out a bit. This is my reconstructed knee, the anesthetist from the mastectomy surgery was concerned about that clotting. It may have been because it was a more 'bloody' surgery than the axillary clearance. So keeping them raised. Will go for a walk with the kids later when they come to visit.
I am feeling calm and relaxed, I know I am in good hands, and need to keep my mind positive.
Got some booklets on wigs, chemo and radiotherapy. Can have some fun with the wigs.
For anyone reading this starting this journey (do you like how I am am expert after a month!) Get an iPod touch or he you have am iphone, there are some brilliant apps and Podcasts. I slept so well last night with the iRelax app. I plan to use this in chemo too. The guided meditation podcasts are brilliant for getting in to the right mental level for sleep.
Looking forward to seeing my babies later tonight. Mmmm dinner is here.