Tuesday, July 29, 2014

Lou's CT scan results of peritoneal and pleural mesothelioma 30 July 2014

An anxious night of disturbed sleep for both Keith and myself.   Even though we both tried not to focus on my oncology appointment today at midday for results it was pretty impossible not to have it close in our minds.

A quiet drive down to Melbourne and blood tests for possible chemotherapy, then a wait of about 45 minutes in my oncologist's rooms.   Allan Zimet is my wonderful oncologist who has been treating me for 11 years now.   The wait was finally over - we were called in just after midday where Allan had the scan results up on his screen to view.

Mild 50% reduction in fluid - with the rest of the tumours/activity still there - so at least the fluid has been reduced and my breathing has improved as has my weight around the tummy area eased a few kilos!

Results of scan below:
Chronic right apical parenchymal pleural scarring is present.  Lungs and pleural spaces are otherwise clear with no evidence of chest mesothelioma. There is no axillary; hilar or mediastinal lymphadenopathy.
Abdomen and PelvisS ince April 2014 there has been a small reduction in the abdominal and pelvicascites although there is still a moderately large amount of ascites.  The peritoneal mass in the left anterior upper abdomen contacting the stomach and pancreatic body and tail and splenic hilum is unchanged in size with no change in mass effect; it measures approximately 7 x 7 x 10cm.  The peritoneal nodularity anterior to the descending colon deep to the anterior abdominal wallis unchanged.  There is no small or large bowel obstruction.  No lesions are seen in the upper abdominal viscera.There is an old compression fracture of Lumbar 2.

Conclusion:  Unchanged large left upper quadrant peritoneal mass and streaky change anterior to the descending colon.  A moderately large amount of ascites only slightly reduced in extent since April 2014.

Further 3 doses of chemotherapy alimta/carboplatin commencing next Weds as I still have remains of a cold/flu.   No steroids to be added to the chemo drugs.  A lighter dose of chemo drugs.

My response:

I am happy that there has been a mild reduction in fluid and my breathing is still not fantastic however it certainly has improved since prior to this round of chemotherapy.

A big thank you to all - family and friends for your ongoing support - this means the world to me and Keith.

Good luck to all the other mesothelioma warriors around the world who are going thru various treatments and waiting for scans/and results.

Crystal Bay Gold Coast holiday Queensland and scanxiety!

After Canberra and speaking as a keynote speaker, I flew on to the Gold Coast, Queensland arriving late at night around 9pm.   My dear friend Helen picked me up and I enjoyed 2 nights staying at her place.

Lou and Helen enjoying morning tea at Shingle Inn, Gold Coast.

Tuesday 15 July we enjoyed a wonderful catch up/luncheon at Burleigh Heads Surf Club overlooking the beach with Gail Cook, Pat and Marilyn McCormack.   Gail lost her darling husband Steve 9 months ago to deadly mesothelioma.  Pat is living with mesothelioma.   Thank you Gail for arranging the venue - it was fabulous!  We were there for over 3 hours!

Next day I caught the train to Brisbane and surprised my daughter Debbie and little ones (Evie little grand-daughter who is 4, and Lux my little grandson who is 5) staying the night and helping them to pack/get organised for our holiday on the Gold Coast at Crystal Bay Resort for 7 nights leaving the following morning by train.
Debbie, Lux and Evie ready for our holiday on the Gold Coast!

Crystal Bay Resort, Gold Coast

On the train to Gold Coast, Evie, Lux and Nan Nan!

We had a great 7 days - beach, feeding the pelicans, fish'n'chips, plenty of fabulous playgrounds, Pacific Fair via the new G tram to see Tinkerbell and the pirates at the movies, Deb and kids went to Dreamworld one day while I went to Surfers Paradise to meet up with my dear friends for lunch.  Another day Deb wanted to take the little ones to Surfers Paradise and real waves .... great time spent with my daughter and grandkids, weather was just perfect - sunny and warm!

Keith flew up for the last 3 days - the first night he came over to where we were staying and enjoyed tacos with us for dinner.  We stayed with friends for the last 2 nights and enjoyed catching up with them.   We got to see Keith's brother a few times and the last day caught up with Keith's 3 kids and their partners/grandkids for breakfast.   We enjoyed that time so much.

Monday was my CT scan to see what is happening while on chemo.  I commenced further chemo early May ... results tomorrow.   I also came home with a head cold that is gradually easing, now Keith has it!

Monday, July 28, 2014

Keynote speaker Canberra, ACT, 14 July 2014 PGARDS/ASEA.

Thursday 10 and Friday 11 July were 2 terrible days for me - my body came down with infection, pain and fatigue.   I was due to fly up to Canberra, Australian Capital Territory (ACT) Sunday 13 July.  I slowly came good Sat and by midday Sunday apart from the extreme fatigue I felt okay and was determined to get on that plane for Canberra where I was to speak on Monday 14 July at Parliament House, Canberra to the politicians.

Luckily a special and dear girlfriend Vicki and husband were able to pick me up from the airport and I stayed the night with them in Canberra and was thoroughly spoilt and pampered.  By Monday morning I was ready for Parliament House although a bad back pain was annoying me so I took a morphine based tablet and slowly is went to the background of my health and determination!  Vicki kindly drove me to Parliament House and came inside with me until I was met by Geraldine - Senator Lisa Singh's aide/personal assistant.  Geraldine and Lisa kindly offered me the use of their office for day to rest and recuperate if I needed to do so.  I met with Lisa for a while and we discussed the global ban on asbestos and asbestos in Australia.   Lisa's portfolio is a huge one and I am not sure where she gets her energy to carry on/embrace everything as she does so efficiently.

We made our way to the parliamentary luncheon just prior to midday where Peter Tighe (head of ASEA Asbestos Safety and Eradication Agency) was waiting for me along with others that he introduced me to including various politicians.   Members of support groups were invited as well.  Bri Heseltine who heads the group for Mr Fluffy in Canberra was also invited - it was great to make personal contact after being facebook friends with her and to let Bri know what an inspiration that she is with taking on this huge task.

Senator Lisa Singh spoke, as did Peter Tighe then it was my turn.   Russell Broadbent MP also did the closing speech after mine.
(My speech below)
I’d like to begin by thanking the Parliamentary Group on Asbestos Related Diseases for organising this event and for raising awareness about this very important issue.   I’d also like to thank the Asbestos Safety and Eradication Agency for supporting this event and helping PGARD raise awareness about the dangers of asbestos.  I lost my father to pleural mesothelioma in 1985 – he was only 54 years old.   Like many people in our community, I was diagnosed with peritoneal mesothelioma, an asbestos-caused cancer in 2003. I never knew my fate would follow my father’s footsteps.  As I began to heal from surgeries and chemotherapy, mesothelioma spread to the pleura of my lungs in 2009.  I only know to fight – and fight hard – I am currently having further chemotherapy treatment.   Asbestos has had a hugely destructive impact on my family and me.
My story is only one of thousands of stories out there where families have suffered and have been torn apart by this insidious substance.  My pain and knowledge, has spurred me on to advocate for the sufferers of asbestos related diseases and their families and for greater awareness of the dangers of asbestos and prevent people from being exposed in the future.   I attended the initial Asbestos Summit in Sydney in November 2012 where Bill Shorten announced that an independent Agency would be established to target this issue.

 In my mind this was the ultimate and very important step in asbestos safety and eradication for Australia and also leading the way worldwide.     I was so overjoyed that this had finally come into fruition through the work of support groups, unions and government.   I felt at peace, that if I died tomorrow I would be happy in the knowledge that this is in place.  As my mesothelioma battle continues, so do my advocacy efforts.  In April 2014, I was fortunate to attend the Asbestos Disease Awareness Organisation (ADAO) 10th International Asbestos Awareness Conference in Washington where I was honoured to receive an award for advocacy and support to other sufferers and their families. As a guest speaker, I shared my story.   Asbestos Safety and Eradication Council Chairman Geoff Fary was invited to also speak at the ADAO conference in 2013. He spoke about Asbestos Management Review, the new agency and the way forward, and people listened.  It was clear to me, that America and other countries see us as leaders in our country and abroad in campaigns to ban asbestos.  We have come a long way since the full ban on Asbestos in 2003, and most importantly, with the establishment of the independent Agency.  Mesothelioma is a death sentence for the person diagnosed and their family.  Asbestos tumours are likened to barb wire and eventually join up into like a mass of hard concrete in the linings and suffocate the organs making breathing painful.  It literally takes your breath away.

Australians need this Agency to ensure there is a national approach to identifying asbestos and developing ways to remove it from our community.  I have a great fear that without the Agency, the issue of eradicating asbestos will be put on the backburner and will fizzle out.  Please hear my voice. I would not wish this painful and aggressive cancer on anyone.  Those nearly invisible fibres have devastated my family, my friends, my community, and me.   My father paid a high price for his work – his life. Now I fight this painful, but preventable cancer.  Do we want asbestos to continue to plague us and the next generation?   For me, for us, please keep the Asbestos Safety and Eradication Agency viable – prevention is the only cure.   I thank you again for inviting me here today.

Standing on the steps of to the entrance of Parliament House prior to the PGARDS luncheon.

At PGARDS luncheon with team members of ADFA (Asbestos Diseases Foundation of Australia), Kat Burge South Australia and Senator Lisa Singh.
Lou with Senator Lisa Singh.

Peter Tighe speaking on behalf of ASEA.

Senator Lisa Singh speaking.

Photo: Listening to international anti-asbestos advocate Lou Williams at the Parliamentary Group on Asbestos Related Disease. Respect.
Lou speaking.

It was a highlight of my journey with mesothelioma to be able to stand up for myself and everyone living with an asbestos related disease plus those who have lost their lives to this deadly disease.  I was truly honoured to have been asked to speak and even though illness at the time nearly stopped me from attending - I was determined to be there!  To be a voice to be heard!

Wednesday, July 9, 2014

I am off to Canberra as a keynote/guest speaker to talk with our Politicians

Next Monday 14 July 2014 PGARD (Parliamentary Group on Asbestos Related Diseases) have organised a luncheon at Parliament House, Canberra for various party politicians to be present.   Also ASEA (Asbestos Safety and Eradication Agency) are also supporting this important event to raising awareness about the dangers of asbestos.  I have been invited to be a keynote/guest speaker.  It is an honour to have been asked and I am looking forward to this event.

I will be flying up on Sunday afternoon and staying with good friends for the night rather than an early flight on the Monday morning that could leave me feeling exhausted and a bit short of breath.

Our winter weather has well and truly set in today.  We were lucky to get above 4 degrees celcius.  Charlie is feeling the cold and goes from one lap to another or ducking under a doona to keep warm!
We went into Gisborne - our local village today to buy Charlie his staple diet of free range chicken or BBQ chicken and caught up with Keith's daughter (my step daughter) Karin for a coffee/chat in a warm cafe then braved the cold winds to the car.

Today on the Gold Coast was my friend Zoe's funeral - I was not able to attend however in a couple of weeks will attend the ceremony of her ashes into the Brunswick River.  Miss Zoe RIP - we love you.

Linda Reinstein and her helpers (ADAO) in America have been busywith getting messages together to share with Congress.  There is still time to share your message and story.
ACTION Alert: We want to share YOUR stories and ‪#‎Message2Congress‬ photos. Take Five Minutes and Urge Your Two US Senators to Send Staffers to the ADAO Briefing on July 17. ADAO will dedicate our briefing to Mesothelioma Warriors Heather Von St James and Mike Mattmuller. http://bit.ly/1tgi8qz

Sunday, July 6, 2014

Fatigue and returning to normality!

Underlying fatigue sets in after basis exertion, however it does not stop me from getting on with my life while undergoing chemotherapy!   I simply stop and have a rest then keep going .... .  I have to be careful with my shallow breathing and do stop and rest if need be.  Slowly returning to normality.  Weds will be day 14 since chemo.

When in Washington, April 2014 I was presented with the 2014 Alan Reinstein Award (ADAO Asbestos Disease Awareness Organisation) at the annual global asbestos awareness conference for my commitment to education, advocacy and support to countless patients and families around the world.  Unfortunately my beautiful crystal teardrop award was broken on the tip in transit.   Linda Reinstein, ADAO kindly organised a replacement award to be sent to my home in Australia.  This beautiful award sits proudly on our living room mantle piece.

Lack of energy and lack of appetite at the moment leaves me hating the thought of planning what we are going to eat.   My beautiful neighbour and good friend tonight brought over a lovely sweet potato soup for our dinner - thank you Marg!

Our winter weather is well and truly here and sees Charlie (our siamese cat) spending most of his time cuddled up either on our laps or under a doona somewhere cosy and warm or by the fireplace.

This morning we went to our local country market at Gisborne and did a walking lap - by the time I had finished I was a bit exhausted, however glad that I had done it!

A good friend of mine passed away this week due to cancer.   She fought a very hard battle on a constant daily basis to stay alive.   RIP Miss Zoe - Luv you forever.

Photo: Wearing pink in remembrance of the late, beautiful Zoe Darling. RIP - you fought so hard and will be missed xo

Tuesday, July 1, 2014

Day 8 on Chemo regime Alimta/Carboplatin and Trial by local Council NSW to end illegal dumping

Day 8 of chemotherapy should see me starting to feel better.   Yesterday was the day of feeling like death warmed up!  Back ache, bile and metalic taste, nausea, anxiousness, fatigue and unable to sleep longer than a couple of hours at a time.  Today after taking medication to fend off most of the above symptoms I am hoping to come good and enjoy the sunshine that has appeared outside!  Expected temperature will be 16 degrees celcius and sunny - a perfect Winter day!

Monday brought a wonderful surprise for me - my daughter Jo invited me to a high tea at the beautiful Windsor Hotel, Melbourne.   I caught the bus that has replaced all trains for 2 weeks while school holidays are on and so that VLine can work on the rail tracks, then a quick tram ride down Bourke St to Spring St and the Windsor hotel.  A wonderful 2 hrs with Jo and little grandkids. 

The Hotel Windsor in Melbourne has been serving traditional afternoon tea every day since 1883.
Our luxury hotel in Melbourne serves its renowned afternoon teas on silver three tiered stands where freshly baked scones are served with jam and cream and exquisite pastries sit above delicate finger sandwiches.  A glass of French sparkling is served on arrival and an extensive selection of speciality teas and coffees are brought to your table throughout the afternoon.

the hotel windsor little melbourne review
Due to my bile/metalic taste I stuck to a scone and beautiful sandwiches and Sencha green tea!

'DISPOSING of asbestos will be cheaper and easier in the Shoalhaven as part of a 12-month trial that started on July 1.'
Comment: As posted in June this scheme also includes the Sydney suburbs of Hawkesbury, Holroyd, Hills Shire, Liverpool, Parramatta, Penrith, Auburn, Blacktown, and Fairfield and many others. If you live in NSW it is worthwhile checking with your local council to see if they are part of the scheme, and if so when it will commence.

The NSW Environment Protection Authority (EPA) will begin a trial of the Householders’ Asbestos Disposal Scheme in 24 councils including Shoalhaven from this week.
During the trial Shoalhaven residents can dispose of small amounts of wrapped bonded asbestos for $102 per tonne, rather than the normal charge of $290 per tonne.
Asbestos inspector and auditor Neil Wallace from Asbestos Reporting South Coast said most people would be surprised at how many Shoalhaven residents work with asbestos as if it was harmless.
Mr Wallace thought people would be also be shocked at how often asbestos was dumped in the bush.
“People who dump this stuff in the bush are exposing themselves and possibly their loved ones to asbestos,” he said.
“This reduction in the cost to dump it properly will be a plus.”
Shoalhaven Mayor Joanna Gash was pleased Shoalhaven was chosen to participate in the pilot scheme.
“The successful councils had been selected by an independent review panel based on
the merit of their applications,” she said.
“Results of the pilot program will be independently analysed to inform the NSW government on the best approach to reduce the dumping of asbestos waste.”
The limit for an individual under the trial will be five tonnes and is based on the average house in Western Sydney built in the 1950s having four tonnes of asbestos.
The West Nowra and Ulladulla recycling and waste depots will participate in the scheme.
To be eligible, Shoalhaven
residents must register with council prior to proceeding to the landfill.
A coupon will be issued and the discount automatically applied.
The scheme will finish on June 30, 2015 and is available to Shoalhaven householders only.