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!

Next stage. In this journey

I guess it has been with trepidation that I have started to think about reducing the hours I work. Deep down I knew I had to, as I have been so very tired...but in my mind that meant I was giving in to f'n cancer by changing my hours, and working part time. As a teacher I hate taking days off, as it affects my students, this is something only other teachers truly understand.

So after getting a run around trying to find out what my options were in regards to mot losing money, but reducing hours, I finally set up a meeting with my union rep. Over these weeks I have been running a range of possible scenarios through in my head, how will it best work. What I came up with was working part time, but taking a day a week in sick leave...would it work? Could it work? I have 70 days sick leave up my sleeve...if I was to stop work now, they would be lost... If I was to reduce hours now it would affect my superannuation payout when I do decide to finish....

Union guy says yes...it is very do-able ... So I went straight on to the timetabler, so he can factor that in for term 4... Next time I see my oncologist I will get a certificate...and we will work it out.

I have also worked out what is making me so sleepy... Lyrica, which is used for nerve pain... I sending me to sleep... So not using it in the day...scary having micro sleeps as I drive home...

So very pleased to have a plan of attack...

And now to sleep...perchance to dream

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.

Bleagh

Time for a vent... Turn away now if you want a happy smiley read... This is not that

I feel like shit...

Fuck cancer... It took another of the ABC girls today...we had a running commentary from her daughter of the last few days... It was special to be privvy to her thoughts on this part of the journey, but it really does bring about the sad reality of the end for us... No thoughts of being 99 and passing in my sleep of old age fighting fit ...just old...it does make me angry....

Today the pain and tiredness added to my anger... I was snippy with the students and had to pull myself into check a few times...it's not their fault I feel like this... Maybe I do need to change the amount I work, or even stop completely ... But then what...just wait to die?

Said things I probably shouldn't today... I have to find my inner peace and not let this get to me so much... The pain in my hip is increasing...well probably more my sacrum.. And in my forearm, further to the wrist than the initial cancer in that arm...

I have a morphine patch...25 micrograms an hour, ibuprofen SR, and 8 paracetamol 2x4 - 6 hrs and endone when I get home.. Have had two and it has only just knocked the edge off the pain.... Everything is annoying me...I just want to cry and sleep... I have to put on a brave face for the family... So this is my vent...

Take this in hand... Must try to meditate... Find my inner peace ...relax ...easier said than done

Winter lurgies

Lips have been dry for over a week...been getting very dry throat and mouth...massive night sweats..jitters...tingly lips...slight dizziness... Was putting it down to new meds, pushing through it, walking 3km each night...

The 2 weeks holidays were good to me, felt revived,caught up with family, got creative...did no school work..oops...LOL...but felt good, if the weather had been better I would have gone for a ride!

Then back to work... Totally broke me...so exhausted each day...PD on Monday was ok, then just got more and more tired...crashing for a snooze each day as soon as I got home. Thursday was a whole day excursion into the city with year 9s... I had planned it, so couldn't call in sick, the drive in was excruciating...I was falling asleep at the wheel...got to the station, at least I didn't have to walk far...but I could hardly stand. I was snappy and not in a good headspace...

http://instagram.com/p/qiEKP8jSWf/

Chocolate cake for brekky definitely helped! Well for a bit...

Finished off the day with parent teacher interviews... My oldest in yr 12 is at least one thing I don't have to worry about...he is doing so well...making me a proud mumma.

Friday, while in the shower I realised it would be dangerous for both me and other road users...then I tried to talk to the family....no voice at all... Called work, set up my classes, had my medication and breakfast and was back in bed by 8am...thinking I would read or wake in an hour or so....next time I saw the clock it was 3:55pm and I was still tired. Got out of bed, so the kids would see me up, maintain normality....zonked but stayed up til 9.30... Then bed

Then a little sad today as the others left for the track...but got over that and slept til midday. Endone and paracetamol with lemon, porridge and tea, while chilling on the couch! Great pain in my hips and sit bones...tired beyond belief...jittery...looking forward to getting back to bed. But Dexter has been looking after me!

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!

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
!

The Road to healing

Well... ya know I was feeling no pain, feeling fit and healthy and happy until they started to "fix" my cancer... and tomorrow we take the very scary step...the next step in healing, which will make me feel bleagh... Chemo.

Ahhh well first things first... my babies were wonderful to me over the weekend, particularly Sunday - Mother's day. Pity I was in so much pain. I think I knocked the drain bottle sutures, and I know one of my babies accidentally sat on it, pulling it again... so panadol wasn't doing it for me over the weekend.... and then Mic suggested I should cut down on the 4 hourly panadol... hmmmm easy for him to say huh.
I tried... and I cried... and it hurt... and I was miserable...I was tired, but I got out for a walk on Sunday... don't know if that made the owie worse...
I was getting the drain out Monday morning, so no point getting all drastic Sunday night.... Couldn't even stay up to watch Webber win in Spain...but that meant my back was over lying flat by 5.30am

Follow up appt with the surgeon to remove the drain went well... got my doctor's certificate..."when do I want to go back to work... hmmm I dunno"   and he discussed all the tricky bits...
Did the kids know... the nicest kids can go feral
Sex... take time, and intimacy will return... talk, and love and laugh...
Family and work stuff
Wigs... I will be bald pretty soon. etc etc etc
Brilliant... once the drain was taken out (Mic said it was in about 20cm... OMG, no wonder I couldn't move my arm) I had instant relief... still muscular aches around the shoulder from the axillary clearance, but no sharp pain any more... that alone put a spring in my step, the sun was shining....and off to the imaging place to get the gated blood pool scan.
Had a lovely guy, doing the blood taking... he was sooooo gentle, and would be doing the CT and Bone scan on Friday too. Did not feel a thing, he put in a bung thingy in my arm - gave me something, I had to wait half an hour, then he took my blood and added the radioactive stuff to it... had to wait another 15 minutes until he reinjected my live blood, and put me under the big camera to take pics of how it was travelling to my heart. This test is to see how much the chemo affects my heart... what fun.

Reading some blogs of cancer fighters.... the hair thing comes to mind... of course mine is looking fab at the moment..
Hair

but they reckon with this cancer I will lose it within a week... well... I have had a shaved head before.... time to break out the clippers before the drains get totally clogged up with my mop. I offered to let the kids cut it - how often would kids get that opportunity (well I read that on one of the inspirational blogs I have been reading) but they looked at me a bit confused.
We shall get there.....  and now, for a night's sleep without a drain to piss me off or hurt.... yay
Ohhh and have cut back on panadol already. Did some Pilates moves... thinking about getting some stuff to keep me regular... hospital seems to clog me up.