Wednesday, November 20, 2013

PET SCAN & quick trip interstate!

A quick 4 day visit to Queensland catching up with my beautiful daughter Debbie and little grandkids Lux and Evie with a visit to Dreamworld where I met up with Gail (who lost her brave warrior husband Steve recently to mesothelioma) and Peter (Gail's brother) for a drink and chat.   It was so nice to spend that time with Gail and Peter and very special memories of Steve in July 2013 when I was in Queensland last visit.

Dreamworld the kids just loved and because it was off season NO REAL TOURISTS there!   It was great to be able to walk around with Deb and the kids, the little ones eyes would light up when they saw each new ride/activity.

Yesterday, Tuesday a visit to the hospital in Melbourne for blood tests, oncologist visit and supposedly chemotherapy.   Bloods were still low, a PET scan ordered for tomorrow (Thursday) and chemotherapy postponed until results of scan next week.    Scan will be at 1.30pm tomorrow with fasting from 7am.   I have mixed feelings about this scan - hopefully STABLE will be the main word my oncologist says when reading the results next Wednesday to me!

Keith had eye surgery today - cataract removal and also his lens lasered and a plastic one inserted into the eye.  He is resting comfortably and has taken pain meds so hopefully will sleep soundly tonight.

We lost another brave Aussie meso warrior, Gordon.   My heart goes out to Dizzy and family.   May Gordon be at peace and free from pain.

Monday, November 11, 2013

My secret for surviving with mesothelioma!

Frequently I get asked what is my secret to living 'longer' with mesothelioma and keeping 'healthy'.

The day that I was finally diagnosed with mesothelioma and it reared its ugly head, meso put life into perspective for me.  I know I will never see my 'old' age however at the moment I am heading towards that being in my 'middle' age and living well!

I believe 'living with mesothelioma' is the key to survival whether it is for a few months or a few years.  It is like living with a sore foot - acceptance of having asbestos cancer and ultimately 'living with it'.  Also 'living in the moment' and dealing with whatever happens in this moment, whether faced with treatment, scaniexty (waiting for results), pottering with every day life - enjoying family and friends, holidays .... .  No use worrying about what the long term future will be - no one knows that, so let the big picture take care of its self (let the universe take care of that for you)!

Follow your dreams, plan something nice whether a holiday, overnight stay somewhere, visiting friends/family, a movie ... an outing to a cafe, visit to a park ... it is looking forward to something.

This weekend a young couple in America, Damon and Keshia got married - he is 18 yrs old and living with mesothelioma - they are following their dream and wanting to be together.   Congrats to this beautiful couple.  

Then when that happens look forward to another 'plan'. Life is full of plans ... I know it is hard to see the big picture of life when living with mesothelioma sometimes xx

Saturday, November 9, 2013

Congrats Damon and Keshia (living with mesotheloma and getting married)!

Congratulations to a very happy couple in America!  Today Damon Haggan married his sweetheart Keshia.   Damon was diagnosed at 18 years of age with mesothelioma.  He and Keshia are defying odds and getting on with their life and have married today in front of family and friends.

Wednesday, November 6, 2013

Farewell to a beautiful warrior!

It is with a heavy heart that I write this blog.  At 4.30pm today a beautiful and brave warrior Steve who lives on the Gold Coast, Queensland lost his life to mesothelioma cancer.  He fought so hard and yet deadly asbestos got him too!   My heart goes out to his beautiful wife Gail who is now left to pick up the pieces of their life together without him.  This cancer takes the best and Steve was one of the best!

Today we went to the hospital in Melbourne for my picc line 'grease and oil change'.  Due to the Melbourne Cup holiday yesterday day chemo ward was very busy and we had to wait 1.5 hours for an available chair to sit in while the picc line was cleaned and dressed.   While waiting we went for a walk and had a coffee/green tea at a little cafe then came back and I spoke to a lady who was a 14 year survivor of non hodgkin's lymphoma cancer and as normal chemotherapy had stopped working she was paying for another form of chemotherapy that was not on the 'free list'.   Today was her first treatment at this hospital in day chemo ward so I was able to introduce her to all the nursing staff and make her feel welcome.  The cost of each treatment for her is $3,000 that she has to pay upfront and cannot claim any of it back, however as she said if it buys her more time and quality time then it is worth it.

While I was waiting for my picc dressing I was able to make contact with a guy Dante and his wife Joyce.  Dante has pleural mesothelioma and had just got his scan results - not very good news however his oncologist (mine as well) was changing his chemo regime and continuing with the treatment.  It was great to finally meet them and answer their questions.  While waiting in my chair with the picc line cover off and the nurse Lana had gone to sterilise her hands .... I leaned over to Joyce with my details on a Bernie Banton Foundation business card.  DISASTER!!!  My picc line came out!!!   A phone call to my oncologist and he said 'take it out completely as it is exposed to air'.  So out it came ... and chemo treatment is scheduled for next Tuesday ... and depending on whether my veins are okay for chemo or if I need another picc line inserted we will see on the day!  Maybe this explains why last week the nurses couldn't get blood from the picc line!!

Yesterday while working in the garden ..... very slowly from me ... as a tightening of my chest was happening after the lightest work and I would have to sit down to recover for a few minutes .... Keith was burning a pile of dead wood as the fire season approaches next month.   All was going to plan .... and the wood pile was almost out .... when bingo - it roared flames up into the air so high and jumped to another huge pile of wood that was dangerously near a huge gum tree.  K raced to get a hose and I raced to get a ladder to cut down branches from the gum tree that may have gotten alight.  After 2 hours the drama was over and we were both exhausted and grateful that it didn't spread further.

My heart is with Gail and Lisa.   May Steve and Tom be resting in peace.

Sunday, November 3, 2013

In between chemo weeks!

Last Tuesday chemotherapy was cancelled due to bloods being down again.  12 November will be my next chemo date for 2 doses (gemcidibine/carboplatin) and most probably a PET/CT scan will be arranged when I see the oncologist on that day for later in the week to see what the state of play is at the moment with the chemo.  This chemo regime commenced early August 2013.  My hair is getting thin and leaving hair on my pillow, floor and clothing.  My energy levels are down however I am OKAY!  As for pain - I have no pain and am taking no medication in between chemo!  I seem to be in a bubble waiting to pop!   The reminder of reality that I am having chemo and fighting for my life is my PICC line in my arm lol.

Sat 26 October we attended the wedding of my brother Chris and his beautiful partner Cheryl.  The setting for the wedding was at Rye, Victoria - a garden themed wedding and one that was just beautiful thanks to their friends for hosting it at their property.   Chris and Cheryl have just returned home from their honeymoon in Sydney.  Friday night they were lucky enough to be in the right place at the right time ... they saw the launch of Asbestos Awareness Month for November, saw the key speaker Don Burke and also watched the beautiful sails of the Opera House turn blue for mesothelioma.  Having Asbestos Awareness Month happen is so important for me to see in my lifetime.  

As it is not recognised as yet on a national state by state scale, I embrace Asbestos Awareness Month as at the moment all we have in Australia is the last week in November as Asbestos Week. The majority of people by then are in Christmas wind down holiday mode and not really interested in anymore awareness days/weeks of any description. Having a month of asbestos awareness in my opinion, makes much more sense. Bring on next year and a nationally recognised Asbestos Awareness Month! Also with my campaign/petition to have September 26th recognised as a National Mesothelioma Day would be terrific to see in my lifetime.  This would then become a global Mesothelioma Day celebrated on 26 September!

We have lost more warriors to this deadly mesothelioma cancer since my last blog.  All put up a brave fight and have left behind loved ones who now have to pick up the pieces and make sense of their lives without their loved one thanks to deadly asbestos!

Charlie caught another bunny the other day while we were at the wedding.  Our very kind neighbour found it!