Wednesday, June 25, 2014

Chemotherapy today, extreme gale force winds and rain damaging parts of Australia

Chemotherapy today, arrived in Melbourne at the hospital just after 11am, up to Pathology, bloods taken and we waited for the slip to show my oncologist.   Saw oncologist just after midday - chemo on the cards, a CT scan will be on 28 July and depending on how the chemo is working it will determine whether chemo will continue - so only time will tell.  I KNOW that chemo is working its magic as much as I hate the side effects it is the only thing that is kicking it in the butt for now!

Day chemo this time for chemo - a wait to receive the alimta/carboplatin from pharmacy then we were finally able to leave just before 4pm ... so an hr's drive home in traffic and with me feeling high on steroids for the journey - it seemed a long hour's trip today!   While in chemo I felt anxious and just wanted to get out of there - that is what chemo does to my mind.  Also a pain where the chemo is going thru my veins, even now as I am typing there is a pain there, no doubt bruising will again apear for a few days.  Lock jaw started to set in as we were heading back to the car after the chemo, by the time I got home my jaw was locking up, thankfully with a relaxer/sleeping tablet and a rest in the lounge chair with Charlie on my lap I fell asleep for a couple of hrs and bingo - the lock jaw went away.  Just one of the allergic reactions to the chemo.  High on steroids tonight ..... another 2 weeks of side effects to get through, every one so different daily.   Just have to stay warm and out of the wind/cold as my immune system will be down and I cannot afford to get a cold/infection.

To all the warriors doing it tough at the moment - my heart goes out to you.  Holding your hand and giving you some inner strength to get through these tough times - YOU can do it!  WE can do it!  We are tough warriors who put us through sheer hell to keep on living, hopefully with quality of life too.   Our families, in particular our partners go through sheer hell too - they ride this nightmare journey with us.  They live and breathe it.  By the time Keith arrived home today he too was utterly shattered with the emotional rollercoaster of events and seeing me go through it the treatment today.  He said to me today that he wished it was him going through it and not me.  I replied no way - I wouldn't want him or anyone else to go through it - it is a living hell at times!

Our crazy weather in particular most of Victoria and parts of New South Wales are experiencing very cold fronts and wild winds.  Plenty of trees down, power failures, building walls collapsing .... just crazy!

Severe Weather Warning for Victoria damaging winds and blizzard conditions
for people in the North East, Central, West and South Gippsland and East Gippsland forecast districts

Issued at 9:22 pm EST on Wednesday 25 June 2014.Weather Situation

A low pressure system will move through the Southern Ocean tonight and during Thursday while an associated cold front near the southwest Victoria coast this evening, is expected to cross the central coast overnight and extend through Gippsland early Thursday. Damaging winds around 70 km/h with peak gusts of 90 to 110 km/h are forecast for tonight and Thursday morning over coastal regions and the higher ground of the Central, Gippsland and Northeast forecast districts. Conditions should ease later Thursday afternoon. Blizzard conditions are forecast for Alpine regions overnight, but should ease later Thursday morning. The State Emergency Service advises that people should:

Move vehicles under cover or away from trees.
Secure or put away loose items around your house, yard and balcony.
Keep clear of fallen power lines. For emergency help in floods and storms, ring your local SES Unit on 132 500. The next warning will be issued by 5:00 am EST Thursday.

For car lovers of appreciation!   Steve McQueen's beautiful 1956 Jaguar XKSS
Steve lost his life to pleural Mesothelioma aged 50 years in 1980.

Steve McQueen's - 1956 Jaguar XKSS
Photo: Steve McQueen's  - 1956 Jaguar XKSS

Friday, June 20, 2014

ADFA Asbestos Diseases Foundation of Australia Business cards have arrived!

My ADFA Asbestos Diseases Foundation of Australia Inc business cards have arrived in the mail.   I am now officially ADFA's Social Media Voice and I'm very proud and honoured to be asked to take on this very important role and one that I am very passionate in getting the word out that there is no safe asbestos, asbestos kills.   Helping via Social Media to create awareness, support and advocacy is a very powerful tool in today's modern technology.

Asbestos Diseases Foundation of Australia (ADFA) is a not-for profit organisation working to provide support to people living with asbestos related diseases, family members, carers and friends. ADFA is a community based group founded by Trade Unions, victims, families of victims, and concerned citizens to meet the needs of people affected by asbestos related disease and has a long history of being engaged in advocacy work within the Australian community.

GBAN Global Ban Asbestos Network - my title - Australian National Director is also a very important role that I take seriously and am honoured to be part of this Worldwide Network in banning Asbestos totally.  Together in Unity!

Thursday I was able to spend time with someone newly diagnosed with mesothelioma and help them with their journey.

Weds we caught the train to outer Melbourne where we picked up my 'new' car .... well not officially a new car however a bigger one than the current car.   While going through chemotherapy I just feel claustrophobic in the smaller car and cannot get rid of that feeling.  So we now have the smaller car to sell - hopefully it will sell quickly.

Yesterday another quick train journey to Sunbury catching up with my sister for coffee/chat, then a train journey to Woodend to rejoin Keith and our friends from Tasmania who are staying in Melbourne for the weekend and to see a couple of games of Aussie rules football.  Great to catch up with them and they now are familiar with the Macedon Ranges!

Today is a cool and overcast day - Winter has truly set in here!

Monday, June 16, 2014

2 weeks since last chemo and feeling good!

I have turned the corner and feel normal again!   I am back doing what I enjoy in life and have energy combined with stamina .... well for a couple of hours at a time anyway!!

It has taken 2 weeks since my last chemotherapy to actually feel any energy and where breathing is less restricted/shallow.

Congrats to Steve and Linda Wride in UK - today Steve celebrates 5 years since he was diagnosed - no doubt a very special celebration dinner is planned!

Mavis Nye another beautiful and brave Mesothelioma warrior in the UK has started on a new trial today.   Sending positive vibes to Mavis and others who are undertaking this trial now or very shortly.

Rohan who has just had extensive Mesothelioma surgery in Sydney, NSW is coming out of hospital today - he has a long road to recovery however with the help of his beautiful wife Barbara he will make it.

Chris Olsen in USA has just had the same surgery.  Chris is in his late 30s and is now at home with his lovely wife Lisa and family.

Monday, June 9, 2014

Day 7 Chemo slowly coming good!

Last Weds 4 June I had another lot of chemotherapy for peritoneal/pleural mesothelioma.  Alimta combined with Carboplatin. 

A blood test followed by a visit to see my acting oncologist Dr Vaughan with the nod to go ahead with chemotherapy.  I asked him if he had looked over my recent scans, and his reply was yes ..... not good, however as I present unpredictable with my treatments and survivals - anything is possible, though the cancer has now progressed and is on the move rapidly.

Due to no chairs in day chemo, I had to be admitted as a day patient to the oncology ward.  Waiting for a bed was a problem .... and by early afternoon I was hooked up to chemo and after a few hours released for home.

How do I describe this chemo?  An endless round of medications to combat the nausea, bile, anxiety, death feelings on day 3 and 4 .... , sleepless nights, .... .   Due to so many chemotherapy treatments over the years my body has built up a resistance to the chemo and I am finding it harder to stay positive being on it.  HOWEVER I am giving it my best shot and hopefully it will knock the little blighters again so that I will get a few months if not a couple of years more before further treatments.

Today is shaping up to be a beautiful sunny day here - we will go for a small country drive, probably pick up our mail and end up somewhere nice for a couple of hours.  The surprise of the unknown is sometimes the best medicine!

My thoughts are with the loved ones of  2 very brave mesothelioma warriors who died a year ago.  Debbie Brewer and Janelle Bedel.  Both were inspirational and always fighting the cause of others even though they both were so bravely living with this cancer on a daily basis. 

Kangaroos grazing in the garden.

This picture was taken in 2012, and it is the same at the moment - beautifully lush and green.

Sunday, June 1, 2014

Busy Sydney, Australia flying visit to attend Asbestos Safety & Eradication Agency Workshop

Last Tuesday 27 May 2014 I flew to Sydney for the Asbestos Safety and Eradication Agency Workshop/Summit to work out strategies to save the Agency.  Currently the Abbott Government is looking at closing the Agency due to drastic cost cutting measures that they have had to resort to in their short term of governing.   To close this Agency would be a disaster on the Asbestos front in Australia.

I landed just after 5pm, took the very fast airport train into the city and then the light rail to the Star Casino stop where my lovely cousin, Heather was waiting for me.   A 2 minute walk to her place, quick dinner then we walked down to Darling Harbour and watched the beautiful Vivid Sound and Light Show on the water.   I have seen many of these beautiful Light shows around the world and this one is definately high on the list to see!   Simply spectacular!
This is the Vivid show on Darling Harbour, Sydney, NSW.

Next morning I set off on foot, walking across the beautiful Pyrmont Bridge past Chinatown to the Trades Hall building where I left my bag and walked back into the city to the beautiful QVC (Queen Victoria) Building where I visited a lovely cafe upstairs and had a croissant and green tea.  Back to the Trades Hall building for the Asbestos Safety & Eradication where I spotted Margot Hoyte grabbing a coffee before the meeting so we were able to have a chat prior to the meeting.  Margot (ACTU) has just taken up a position in Brisbane, Queensland - I wish her all the best, she is returning home after many years away.  Margot has been a great asset to the ACTU in Melbourne.  The meeting was very successful and a step in the right direction in helping to save the Agency from the chop!

After the meeting a quick walk to Central Station and train ride to where I was staying that night with good friends.   Dinner at a beautiful Greek restaurant that night to discuss a fundraiser for Mesothelioma Research followed.   The next morning a surprise knock on my sister in law's front door for her birthday!  She was just so surprised - we so enjoyed our time together and after an overnight stay I flew home late Friday afternoon.

Even though out of breath when I arrived in Sydney, I was able to walk through it and was so glad that I did make the effort to attend the Workshop/Summit.

Yesterday (Sunday 1 June and our first day of Winter) found me sitting by the fire in the recliner chair with Charlie on my lap as my breathing was quite shallow and I was quite exhausted.  Again similar this morning ..... . 

Today 2 June we celebrate our 13th Wedding Anniversary - we will go out to lunch and toast to this Anniversary and to our next one!  I feel so lucky to still be here and well enough to celebrate this beautiful and special occassion with Keith.

Chemotherapy is scheduled for this week - not looking forward to it ... however there is no choice!