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.

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.

October

October for me is: birthdays, anniversary, springtime, daylight savings and Breast Cancer Awareness month. 
I am sure most of you are aware that you need to check your boobies... Man bobbies too...every month and get any CHANGES checked. This doesn't just mean lumps, but any changes.... I didn't have any lumps, I thought it was just hormonal swelling and a blocked milk duct after having breast fed 3 children...it wasn't... It was cancer, and in 2010 I lost one of the girls. It had also spread to my lymph nodes. As well as DCIS I had 7 invasive tumours which did not even show up on the mammogram, ultrasound and stereo core biopsy. I did everything I was supposed to do... 6 months of chemo and over 30 doses of radiation to try and make sure I got rid of the sucker.
4 years ago I was bald and the chemo made me even fatter... Today I am living each day...you only get one chance at this, make each day count.

Today has been a good day

Report from scans shows no progress... Yay..

Got to see my regular onc... Yay

Got lots of stuff to deal with the pain...Yay

So off to bed, and I think I will sleep well....

Changing from femara to aromasin

So hopefully we will stay on track....

I even think I remembered to ask all the questions... Like the femara thing, and pain management...

Yay...even went for a walk...

It is a good day

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!

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...