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.

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.

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.

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...

Week 1 of Rads done

So, once I got the call from ROV it was full steam ahead with planning CT and straight into the radiation treatment. 10 days starting last Tuesday.. Had Friday off work to rest and relax.
Driving home after day 1 Rads I was in a fair bit of pain... Weird, but called a flare up...which is good means the Rads are hitting the right spots.
So today is day onc day, denosumab, and just waiting to see onc now...hmmm

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.

ABC forum at.QVWC

On the train when bed would be a preferred option, but off to the BreaCan forum on Advanced Cancer...

The role of nutrition in cancer management

Dr Maree Brinkman

Will be podcast on the BreaCan website

Contribution of diet related cancer ranges for 10/70 % average is 35%

World cancer research fund

Http://www.dietandcancerreport.org/

Low gi is better

Cancer cells love sugar

Non starchy vegies are good for protection...leafy greens

Processed meats not good...as well as high salt have nitrites and nitrates

Healthy weight range

Try to stay between healthy BMI

Exercise physiologist

Fresh is best, frozen is good alternative as all the goodness is snap frozen

Eat seasonally

Avoid/limit alcohol - as it affects metabolism of folate as well as other issues

Keep up fluids

Vegies...mix up colours, 5 serves, limit starchy vegies 1/2 dinner plate

Fruit...2 serves ...keep in moderation

Grains 4-6 serves 

Proteins

2.5 serves per day

1/4 of the dinner plate 

Tofu...caution with hormone sensitive ...including soy milk

Dairy - calcium rich foods

2.5 - 4 

4 serves for post menopausal

Sardines, salmon, leafy greens

Dietary fats

Treatments

Surgery add protein

Chemo

Radiation

Riboflavin helps with mouth sores and ulcers

Coloxyl and senna

Soluble fibre

Psyllium husks

Bloating and discomfort...

Avoid drinking large amounts of water and hour before and half an hour after a meal

B1 and B12 good for improving tingling and numbness

Bleeding...would that also be bruising? Forgot to ask

Dietary management and suggestions

Fluids - foods with high fluid

Variety

Supplements...if it is strong enough to have an effect it has the potential to cause harm

Glutamine and green tea... Can cause issues as can...

Beta carotene vitamin e and selenium

Extreme diets can throw out the balance

Canceraustralia.gov.au

Www.cancervic.org.au

Nlm.nih.gov

Cancerresearchuk.org

Cancer.org

Anti oxidants can inhibit the effect of chemo

In Moorabin

Check on google

Get referral from GP

Shrinking the worries

The art form of living with advanced cancer

Life does not fit Ito a PowerPoint text box

Life is a mystery

Amma

"How to stop being a zombie and really start living"

The power of language

Entirely understandable to and "normal" that there are worries fears and concerns

It's how we manage them that can make a big difference to our lives

Name your worries

Identify what is most worrying for you helps you to target your attention

Key care givers need to know our priorities

Process to help with creating steps to manage an issue

Threatening and disabling

If a worry feels unmanageable or overwhelming

->

Try to work out what you would need to bring it into a more manageable shape...

Eg: make smaller steps

Help/resources

Identify the room for growth and change

Understanding

->

Enabling and motivating

Breaking the worry down into parts that you can tackle

Finding the help you need to do those things

Working out what comforts/reassures/encourages

Foreground background

What things bring cancer to the foreground

• Pain
• Appointments
• 
  

What things help you place it in the background

• Watch a movie
• Read 
• Go or walk
• Meditate
• Make and do
• 
  

Being able to operate the switch between the two

Making friends with uncertainty

How can we embrace uncertainty and still find equanimity

• The shallow "I'm good" responses

Living with mortality

• This is life

Coping with the "what ifs" and the "possibles" that can assume power

• What coping mechanisms

Finding anchors that keep us steady

• Hugs
• Values
• Growth
• Simplify life
• 
  

Learning to be present

Not dwelling in the future fear or dwelling in the past

• Enjoy the present
• Meditate
• Breathe

Coming into just this moment

Cultivating calm awareness

• This can be an art form
• Don't sweat the mll stuff, when you can

Hope is different to denial

• Daring to hope

   We can hope, we have to hope

• We can hope or things each day
• Look at assumptions of what is and isn't possible in terms of your dreams and aspirations

Verbalise what you want to do, and work towards doing it

• Find purpose and meaning within life as it is now

Making the most of he things you have to do

• The "script" hope writes is very different to the script "fear" writes...

Fear script can be toxic...dare to hope for a brighter script

Put it out there

Don't be self effacing... Just share and tell others what you need

Strategies to deal with stress can be

Defensive

My work short term, but really not helpful or healthy 

Drinking

Smoking

Aggression

Shouting

Assertive

Effective and heathy options 

Exercise

Works longer term

Meditation

Strategies to cope with fears/worries/anxieties

• What are you doing that works?
• What do you need help with?

Quick reference strategy guide

• Awareness check ....breathe in love, breathe out fear
• Reality check test the worry with a trusted friend
• Flip the coin
• Reframe 
• Time frame

Bring compassion to yourself, bring back the time to achievable positives 

• Stepping stones

Break it own to manageable chunks

• Say it out loud

The worry, the fear, the dream... Don't ave to be able to fix it

• Role reversal
• Embrace your fear..

. Like talking to a fearful child...yourself...

• Engage support...identify strengths of team members
• Validate your efforts

Complex situation...each person does it differently

I am a swan....serene on the surface, paddling like crazy to stay afloat!

• Find time to rest
• Celebrate the present

Exercise and secondary breast cancer

Prevailing attitude, wrap in cotton wool

Exercise helps during treatment

A little more care is needed when having secondary cancer

Regular exercise 30 minutes 5 x a week

FATIGUE most prevalent and distressing symptom

Managing fatigue

Exercise...improves anxiety levels....anxiety can increase fatigue through stress

Different activities work...walking...dancing...bird watching..lol...dancing in the nude!

Exercise, helps you feel better

Moderate activity 3-5 hours when you can

Walking...highly recommended

Tai chi, qi gong and yoga

Stretching opens the muscles and helps the lymphatic system

Resistance exercises

Post treatment

Light weights more reps

Boosts bone strength

Resistance bands

Seated exercise effective for upper body

Meditation - exercise for the mind

Calm the mind and relax the body

Bone mets

Bone weakening risk of fracture

Weight bearing -walking -bands

Avoid high impact activities such as jogging

Lung mets

Breathlessness coughing pain

Avoid cold or very dry conditions...warm water program's are best

Pursed lip breathing reduces air pressure

Easier for lungs to expand and contract

Brain mets

Balance probs possible, be selective to avoid risk.

Exercise bike

Exercise with a friend

Anaemia

Tire easily

Bloods reduced capacity to carry oxygen

Water

Warm to hot - Hydrotherapy benefits

Cool to cold - invigorates and stimulates

Exercising in the pool

• Whole body

YWCA ENCORE 8 week land and pool program

Waves warm water exercise program, arthritis Victoria

Hydrotherapy

Aim to be physically active

Art therapy....

Started with the positives...what I wnt to focus on- being a strong role model...loving my family, following the journey, living to be old, enjoying the now

I found it hard to look at the negatives... Death, a life cut short, leaving my story unfinished ...the final curtain

We finished with sharing positive affirmations with each other...

A very powerful session... Teary..harder than I thought it would be...and deep...

Another day another track

Writing this in the little hut for marshals listening to the much quieter F1 cars. Adelaide was brilliant,  had a wonderful drive home...and now back into it.
The body is holding up pretty well, a few aches...elbow is a new one...and hips are not really improving... am a bit over panicking at each new pain, but I guess that is my new normal!
Just having a giggle watching the photographers as they check each pic they take...ahh digital.

It's all about living

Well, it's been a while. New phone, new year, and new and improved outlook.
So the onc. is very happy with progress.tumour markers are down and stable.
Finally able to start thinking longer term...it's a good feeling.
One of the first things we pencilled in when I got the news is doing the clipsal 500.,.at that stage I thought it may be my motorsport swansong. But now I reckon I will have a few more. We are even looking at doing the Bathurst 12 hour...timing is the thing.
Well I am at 8.2 and having a blast,  great team, good action, and I am doing flags first time I have really worked my arm, seems to be holding up ok.
4 flaggies today means a nice break!
Getting back into fitness mapping walks, when my phone cooperates.

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.

Getting on with living

Well, the good news is for the past 4 months my tumour markers have been reducing. So they have gone from 120, to 80, to 40 , to 30, which they say is now a normal level. The oncologist says if there was a textbook response to treatment I am it. Still on xgeva injection every 4 week's, and the rads are finally doing their work and minimising the pain. The worst pain I get now is when I over do things! So heading towards remission I hope. Only having endone in the evening, and paradol osteo now and then.
Life is good..still feels surreal, how can I feel so good, and be so sick? A bit like the phoney war!

Bikram Yoga and Pain Management

October last year I started doing Bikram Yoga, as a new place had opened just around the corner from home...yay...well I really enjoy yoga, and wanted to do a class, but had not done any Bikram (hot yoga) before, I love the heat, but wasn't sure I would enjoy the class, I went along with an open mind, and fairly well hydrated...I thought!

Wow, heavy, intense, amazing feeling....I was in love... It certainly wouldn't suit everyone, but I felt a good fit. Even though I am fairly flexible many of the poses were challenging, in a good way...it meant I wasn't just going along...I was having to really extend myself....I loved it.

So...we skip a few months, I continue with Bikram, once or twice a week, would love to do more...but am so tired when I get home from work, and I am doing zumba and Pilates mid-week...trying to get a run in, and family life...as well as work....love being able to go more frequently during the school holidays...and I am getting compliments on how fit and healthy I am looking....

I feel my balance is improving - I had a fall and rolled my ankle and strained my reconstructed knee, which is still annoying me, but the bone scan was ok, so it's just osteo arthritis, and ligament damage.

Told my onc the exercise I was doing, and he was happy that I continue with it.

When I started the radiation this time, I was told it wouldn't burn me as much as the last lot did, as that was targeted closer to the skin, so as long as there were no immediate skin issues Bikram should be fine.

What I have noticed is I don't NEED to take pain relief medication when I have done a Bikram session. So if I do a morning session, I may only need to take an endone before bed...I was able to get to two sessions during my treatment so far, and on both occasions I felt great afterwards. The weekend I wasn't able to make it I struggled with pain. And it's the same during the week when I can't make it.

I double checked with my rads onc this morning, and she was happy with how I was managing, I don't do all of the postures, there are some that put too much strain on my arm and hips, but others that work into those areas to provide relief.... Yesterday's session was a challenge with the diarrhoea hovering around, and minor period pain like issues... But I had a few extra rest sessions during the class, and was on top of things when I left. Today I have a headache hanging around, could be dehydration...more water needed stat! Of course more sinister things now hang around in the back of my mind....

Of course Bikram yoga is not for everyone, I have tried to find medical articles...but nothing out there is substantial one way or the other. As long as it feels good, has good effect in managing my pain I will continue... My awesome Bikram studio has given me a complimentary pass, so I can go as needed, which is really fantastic, as cost cutting would have seen this go first!

So hoping to keep going, and repair some of my injured body, revitalise and recharge. Have given up on the rosé hip vital, still going with the glucosamine....must get back to the physio about my knee....

One more radiation treatment tomorrow, then back to work....

Counting down to holidays! The rads should have their effect by then...woot...and more time for Bikram