Friday, May 23, 2014

Blood transfusion and Vampire alert!

A visit to see my oncologist on Weds after blood tests the previous day revealed my bloods were way down and I was very anaemic.

Thursday we fronted up to the hospital and checked in with our appointment of 9.45am.  As there were no beds available we waited 2 hours for a bed to become vacant.  Next cross checking of my bloods had to take place, so a wait for the pathology team to come around to the ward and take some blood from me, then 3 hours later the bloods were delivered to the ward and the 5 hour process of being administered the bloods commenced.

As I had been waiting 5 hours already I was feeling pretty anxious and just wanted to go home, so I asked the head nurse to ph my oncologist and put in a request for just one bag of blood instead of the required two bags.   Straight away his response came back 'NO 2 BAGS IS A MUST!'  My oncologist made his rounds to see me just as the new bag was being administered and with a smile he said Í am looking better already'!  Even Keith was saying to me 'honey just another 3 hours out of today to have the 2nd lot of blood will be better than having to come back another time and have it'!
So just after 8pm we finally left the hospital.  I had a craving for salt and a piece of fish!  We stopped at the local fish'n chip shop and Keith bought me a piece of fish - mind you the next day I paid for it as the bile returned quickly and all that I could taste was the fish - however lol at the time I really enjoyed it!

A disturbed sleep both Thursday and again last night - think the Vampire alert in me was happening!  Today is shaping up to be a beautiful warm and sunny day with no winds - so Keith is about to start burning off our big pile of dead tree branches and logs that need to be done before August when our very windy season starts.

Windows need cleaning/washing and the garden needs some TLC - so I might slowly tackle this today.  Yesterday I worked thru feeling a bit out of breath and walked around for an hour outside picking up branches that had fallen down.  I find it is best to work thru feeling like this and I can always sit and rest for a few minutes in between.  There is nothing like beautiful fresh air and nature to keep us grounded in life!

 Charlie enjoying his time in the sun!  He loves his place near the window where he can watch us outside and also keep an eye out for any cars!

 Kangaroos grazing near the front patio.

 Kookaburras waiting for their breakfast!

 Yesterday after the light rain.

Picking up sticks and tending to the garden.

Asbestos campaigner Ray Colbert succumbs to deadly asbestos in Queensland

Asbestos campaigner dies in Queensland

Raymond Colbert worked tirelessly for asbestos disease sufferers. Raymond Colbert worked tirelessly for asbestos disease sufferers.

Leading asbestos safety advocate Raymond Colbert has passed away of asbestos disease aged 67.
Mr Colbert worked tirelessly on behalf of fellow disease sufferers for many years as secretary of the Asbestos Related Disease Support Society Queensland.
Among his greatest achievements was “Ray’s Ride”, where Mr Colbert travelled from Toowoomba to Brisbane in his motorised wheelchair to raise awareness of asbestos diseases mesothelioma and asbestosis and medical research funds.
The journey took Mr Colbert through the flood-affected Ipswich and Lockyer Valley regions in 2011.
"Ray, who was wheelchair bound and on oxygen 24 hours a day, took five days to complete the ride, battling the November heat and plenty of flies," said Andrew Ramsay, the asbestos society’s vice president.
"He travelled along many rough roads through the towns of Grantham, Gatton, Laidley, Ipswich, and ended ... in Brisbane.
"His journey also raised $60,000 in much needed donations to support Queensland sufferers of asbestos diseases."
Mr Colbert was exposed to asbestos fibres while working for the Australian navy in his youth.
"I served in the engine rooms of the Royal Australian Navy aircraft carriers HMAS Melbourne and Sydney for nine years," he once told The Queensland Times.
"When the planes would land on the Melbourne it would shake and asbestos fibres would fall, just like snow coming down.
"If you were going to be contaminated with it [asbestos] that was a good place to get it."
Ray is survived by his wife Helen, sons Darrel, Carl and Christopher, and grandchildren Lucinda, Matthew and Emily.

Ray did so much in Queensland with support and raising awareness - thank you Ray - may you be at peace.  Your fight will continue.   Deepest sympathy to Helen and family xx


Monday, May 19, 2014

2 weeks after chemotherapy, our country drives and .....

It is almost 2 weeks since my cocktail of chemotherapy drugs (Alimta and Carboplatin).   Last week's blood test revealed that bloods were way down.  I feel tomorrow's blood test and results with my visit to see the oncologist on Weds will definately show a further drop.  I have started to come good and have felt fine apart from getting out of breath quickly if I exert myself too much.  This evening my hair has started to fall out strand by strand ....., bile has set in and feeling anxious is creeping in ... however it will not beat me!

We have been making the most of our beautiful warm and sunny May days by going on country drives with the wind in our hair!   A drive to Woodend, Kyneton and yesterday to Malmsbury.

Malmsbury to visit a newly purpose built car barn/cafe for morning tea.  Jazz playing in the background and if we had of stayed for lunch - live jazz!   Highly recommended venue!  Followed by a walk around the Botanical Gardens opposite the cafe - Autumn leaves, lake and fresh air.

 Kyneton and a visit to a beautiful nursery - Garden Tap

Malmsbury - 5 span Viaduct railway bridge built in 1862

 Malmsbury - Car cafe

 Malmsbury - Botanical Gardens

Wednesday, May 14, 2014

Chemo day 8 turned the corner finally!

It is now Day 8 since commencing chemo again (Alimta/Carboplatin).  Fatigue has set in - although this does not stop me from doing anything ... just now in moderation!   Bile taste that is there all the time and fluid buildup.

Blood tests yesterday and a visit to see my oncologist today for results.  Bloods down so a further test next week and to see the oncologist next Weds.  Re the fatigue - Alimta is a huge problem with this.  Bile taste to take the Pramin (anti nausea tablets) and re the fluid - too early at this stage of chemo to have any effect.

This evening I pottered in the garden pulling out a few plants and transplanting up near our top dam as the rabbits seemed to have chewed all the original plants.  I picked up some firewood in the wheelbarrow and put the rubbish bins out for collection early tomorrow.  After each physical work I would have to stop and rest as my breathing is a bit restricted due to the chemo.  It was good to get some sunshine and good air in my lungs!  Charlie followed me up to the top dam and after walking around and sniffing the bunny holes he decided to head back down to his inside window position and have a nap.

On a positive note - the current Government have decided for now to keep the Asbestos Safety and Eradication Agency however we still need to keep the 2 petitions (mine and the Union) active.  So please keep on signing and passing on to others to sign as well.

Monday, May 12, 2014

ASBESTOS VICTIM Urges Prime Minister Tony Abbott NOT to Consolidate the Asbestos AGENCY

The above link is to my Petition.  It is vital to share, sign and continue to share -WE NEED THE ASBESTOS SAFETY AND ERADICATION AGENCY IN AUSTRALIA!  It will be a backward step if this Agency is allowed to be swallowed up!  Please sign and share with others - THINK OF OUR FUTURE GENERATIONS - DO WE WANT THEM TO BE CONTINUALLY EXPOSED TO DEADLY ASBESTOS FIBRES!!

ASBESTOS VICTIM Urges Prime Minister Tony Abbott NOT to Consolidate the Asbestos AGENCY

About this Petition

The Australian Government National Commission of Audit wants to dismantle the Asbestos Safety and Eradication Agency.   Australian unions, Asbestos groups, organisations and many other interested stakeholders fought long and hard to secure bi-partisan political support for this ground breaking initiative. The Asbestos Safety and Eradication Agency is an independent body that has one focus, and only one focus, ASBESTOS! It is vital this agency maintains its independence and does not get swallowed up into the depths of bureaucracy by being merged into a multi-faceted government department.  We must not let this happen!   Too many lives are lost to deadly and invisible asbestos fibres.   It can take between 10 and 40 years before an asbestos related illness such as Mesothelioma (asbestos cancer) is diagnosed.   Mesothelioma is a very aggressive and painful cancer.   We need to campaign for the Office of Asbestos Safety and Eradication Council to remain and oversee the control of asbestos in Australia.

Keith's blog on being a carer/husband with me living with Mesothelioma and having treatment

Sat 9 May 2014
Hi all,

 A little late, but a bit chaotic around here:

- Louisa had to start chemotherapy again last wednesday as the cancer tumours have developed again to a large degree unfortunately.
  There is a large mass in her lower left chest just below heart area and  further fluid build up all around.  The Oncologist advised her to start immediately as it
  looked serious. She had 3 hours on chemo infusion at John Fawkner Private Hosp (Day Chemo Ward) in Melbourne on wednesday & is recovering (very slowly)
   at home now. Next visit to Oncologist is next wed, next chemo due 22 May if blood tests permit.

-  To be honest she is not looking too good, a lot of pain, morphine based tabs & other medications hardly helping at moment. Not eating much & finding it hard
   to get around.  However, as you all know with Louisa, she is mostly concerned about her family & friends, as well as the hundreds of her internet friends
  associated with the horrors of asbestos related diseases.

-  Also we have our good friends Lez & his wife Roz, from Tasmania, staying with us for about 8 days. Lez underwent open heart surgery last week at Epworth
   Hosp & is also recuperating at our house.

Both are in reasonably good spirits despite their problems.

That's about it folks; more as it happens.



Sunday, May 11, 2014

GLOBAL BAN ASBESTOS NETWORK - Lou Williams, Australian National Director.

The Global Ban Asbestos Network GBAN) was founded in 2010 by the Brazilian Association for the Asbestos-Exposed (ABREA) and the Asbestos Disease Awareness Organization  (ADAO) to provide a social network resource for Communication, Collaboration and Action sharing "ban asbestos" information worldwide.
As our reach has grown to nearly 30,000 viewers,  Fernanda Giannasi (ABREA) and I are thrilled to welcome three new members in leadership roles. Lou Williams, Australian National Director, Dr. Ken Takahashi, Asian Regional Director, and Yvonne Waterman, European Regional Director, will serve as communication coordinators for the network, bringing together 33 Members from 21 countries.  For Dr. Takahashi and Yvonne, we are acknowledging the invaluable role they already play in GBAN. Lou is new to our group, an expert in social media, asbestos organizations, and educational efforts in Australia and around the world, and also a Mesothelioma Warrior.  All three presented at the 2014 ADAO conference in April and we encourage you to watch their videos to learn more. 
Read More ...

It is a great honour for me to have been invited to become the Australian National Director, Global Ban Asbestos Network.

Chemotherapy day 6

Weds 7 May 2014 was the day that I recommenced chemotherapy for peritoneal and pleural mesothelioma.  My mind is foggy with the chemo at the moment even remembering that date I had to write it down and count backwards as I am not sure where the last 6 days have gone to!

An early start driving to Melbourne (1 hour away if no traffic) to John Fawkner Hospital for treatment and to see my oncologist Mr Allan Zimet. 

Keith and I went straight to his waiting room as no blood tests were required due to having had them taken last week with the CT scans.   We did not have to wait long and before I knew it we were in his rooms discussing my treatments.  I asked if it would be viable to have a pet scan as well just to reconfirm results and maybe by some small chance it were a mistake the big mass that is growing in my diaphram.  Unfortunately Allan smiled and showed me the Scan results again just to assure me that there was no mistake and the cancer is growing quite rapidly.  We talked about the chemo Alimta/Carboplatin and what was there to gain out of having more when it wrecks my body and mind.   He said SHRINKAGE - so that is good enough for me! 

I am not on death's door - I will survive this chemo again!

Over to the Day Chemotherapy ward where it is like a 2nd home to me - I have journeyed with the staff over the last 10 years and we have become firm friends.  Every other chemo I have had to have a Picc Line inserted due to the narrowness of my veins from all the chemo treatments.  I was very surprised when it was suggested that soaking my fingers and veins in warm water and using a very fine needle just may do the trick.  Bingo this worked, whereas other times it has failed dismally and the needles would just come out of my veins.   So once hooked up to the intravenous machine the pre meds came thick and fast - steroids, anti nausea drugs etc, then chemo and more anti nausea and steroid drugs were pumped through my veins.  After 3 hours we were able to leave the ward and return home.   Straight away I needed my sunglasses as my eyes became very sensitive to sunlight.  Sitting in the car while Keith drove home, my feelings felt like my head was going to explode and anxiety set in thanks to the toxic drugs.

We have had good friends staying from Tasmania until yesterday (Mother's Day) as Les came over for robotic heart surgery as in Tasmania this is not performed as open heart surgery is the only option available, and fortunately he was a accepted for the Melbourne Epworth Hospital treatment.  (Keith had robotic surgery last January 2013 for prostate cancer at the same hospital with the same robotic machine).  Les and myself were like ships passing in the night at home as we both were pumped up on toxic drugs and steroids making us anxious, unable to sleep and me unable to tolerate conversation, loud noises, communication including telephone and internet as I just could not focus, keep a conversation going and my head spinning.  We both would be wide awake and getting up like all hours of the night like zombies so as not to disturb our partners and of course poor Charlie every time I would wake and get up - he would get a fright and think that he should get up too.  So consequently every day he has been sleeping in his basket in the sun on the window and continuously yawning!  He seems to have no energy - I wonder why!

Finally yesterday I started to turn the corner on day 5.  Being Mother's day and with my 2 daughters having their own kids in Melbourne and interstate it is not always possible to see them on the exact day so Keith always takes me out for breakfast or morning tea.  There is no way I would want to go out for lunch or dinner as the crowds are just too much for me.  We took Les and Ros up to Mt Macedon (our favourite place where we live in the Macedon Ranges) to the Trading Post cafe and actually were able to sit outside due to the beautiful rays of sunshine coming through the Autumn leaves and trees.  We met friends while we were there who joined us for a drink and chat.  After that we visited the Mt Macedon Nursery across the road and Keith bought me a beautiful little metal bird for my windowsill.  I have been collecting these little birds for about a year now and have a small collection on the outdoor ledges with the birds looking in the windows.  I am not sure why I have taken a fancy to them .... .  We also visited an art gallery then did a walk up the hill to a little seat where Keith and myself walk to whenever we need to - when a warrior passes, when a warrior or someone is ill and needs remembering and for myself too at the moment.  A few minutes silence and just sitting there is very healing and meditating directing white light to the right people and places in life.  This memorial was set up in 1985 for Ash Wednesday bush fires when Mt Macedon residents lost their lives.

I have been awake and up most of the night still with side effects of chemo.  Hopefully the chemo will start to ease today.  Blood tests tomorrow to see how my platelets and blood count is, then on Weds a visit to see my oncologist, if all okay then back the following Weds for further chemo.

Friday, May 2, 2014

Mesothelioma Warrior continues her fight!

After my meltdown seeing the oncologist and receiving the scan results I went into shock mode for 2 days.   Nothing made sense anymore - my mind was getting overcrowded with feelings of overwhelming despair and hopelessness of my situation - I fought so hard again from Oct to Nov 2013 with Chemotherapy and obtained for 6 months some stability and shrinkage of tumours plus my breathing returned to almost normal capacity.  This time I now face a real battle to get thru the chemo regime and receive the news stable and shrinkage of tumours and fluid once again!

I received a beautiful delivery of flowers from the Mesothelioma Warriors around the world - how very special these Warriors are in my life.   Thank you after a few tears, you made me smile and give me strength to continue my fight to live and be a Voice!

I have regained my Warrior strength and am ready to give it my best shot with chemo!  Meso will not get me without a good fight!!

Chemotherapy will commence next Weds with Alimta/Carboplatin.   No doubt due to my veins being destroyed with so much chemo in the past, a picc line will have to be inserted prior to treatment.

A PICC line is, by definition and per its acronym, a peripherally inserted central catheter. It is long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access. It is similar to other central lines as it terminates into a large vessel near the heart. However, unlike other central lines, its point of entry is from the periphery of the body � the extremities. And typically the upper arm is the area of choice.
A PICC line provides the best of both worlds concerning venous access. Similar to a standard IV, it is inserted in the arm, and usually in the upper arm under the benefits of ultrasound visualization. Also, PICCs differ from peripheral IV access but similar to central lines in that a PICCs termination point is centrally located in the body allowing for treatment that could not be obtained from standard periphery IV access. In addition, PICC insertions are less invasive, have decreased complication risk associated with them, and remain for a much longer duration than other central or periphery access devices.
Using ultrasound technology to visualize a deep, large vessel in the upper arm, the PICC catheter is inserted by a specially trained and certified PICC nurse specialist. Post insertion at the bedside, a chest x-ray is obtained to confirm ideal placement. The entire procedure is done in the patient�s room decreasing discomfort, transportation, and loss of nursing care.
A PICC line may requested for a variety of treatment options which include some of the following:
-Prolonged IV antibiotic treatment;
-IV access obtainable by less invasive and longer lasting methods;
-Multiple accesses obtainable with one access line;
-TPN Nutrition;
-IV access related to physiological factors; and
-Home or sub-acute discharge for extended treatment.
PICCs are frequently used to obtain central venous access for patients in acute care, home care and skilled nursing care. Since complication risks are less with PICC lines, it is preferred over other forms of central venous catheters. A PICC is not appropriate for all patients. Proper selection to determine the appropriateness of this device is required.
The PICC may have single or multiple lumens. This depends on how many intravenous therapies are needed. A PICC line can be used for antibiotics, pain medicine, chemotherapy, nutrition, or for the drawing of blood samples. PICCs can be inserted by radiologists, physician assistants or certified registered nurses. They are inserted using ultrasound technology at the bedside or ultrasound wit fluoroscopy. Chest radiographs are also used to confirm placement of the PICC tip if it was not inserted using fluoroscopy.