Hi World! Lou is back home!

Hi everyone - I am HOME again after 3 days/2 nights stay in hospital at John Fawkner hospital, Melbourne.

I am so overwhelmed with all the beautiful caring messages, phone calls, cards etc that I am receiving - I love you all and thank you for being there - your healing strengths give me hope, love and lift up my spirit to keep on fighting this dreaded asbestos cancer - mesothelioma.

Tuesday 6 August I was admitted to the hospital in the wonderful chemotherapy ward - 2West.  It is amazing to think that most of the staff have been there on my journey since my treatment commenced in 2003 at this hospital.  I was lol treated like a STAR from the time that Keith and myself checked into the hospital where a lovely lady Theresa did the paperwork and rang through to 2West to check that 'my bed was ready and hopefully in a nice single room' .... Theresa has been there too all these years and she is such a beautiful person too. 

I settled into my room, then was sent downstairs to theatre for a PICC line to be inserted on my right arm, making it much easier for the chemotherapy needles to be inserted directly into this line without me being pricked and poked as most of my veins tend to collapse when having chemotherapy.  Next hydration and then the chemotherapy drug GEMZAR commenced.

Yesterday hydration for nearly 24 hours commenced and in between I was given the chemotherapy drug Cisplatin.  I had a weird reaction to prior to the cisplatin and while it was going into my veins - lock jaw of my mouth/nexk and chin - weird.  Luckily my wonderful oncologist Alan Zimet was doing his rounds and arranged for cortisone and an antihistimine to be administed.  Eventually both these drugs helped to calm the situation.

A very brave and strong mesothelioma warrior visited me in hospital on both days, my darling husband came into see me every day, 2 of my sister in laws came in too - thank you for your visits - they meant so much.

This morning I was quite drained etc, however with some tapping, positive thinking, a PICC dressing change, shower and Keith waiting to take me home - I was set to go!  Feeling like I couldn't walk too far was not something that I thought would hit me so fast after only 2 lots of chemotherapy! 

By the time we arrived home I was slightly exhausted, felt slighty nausea coming on, however decided to enjoy the beautiful winter sunshine and head outside - Charlie our beautiful 5 year old siamese cat decided to follow me and we slowly took in the sun, walked up to the gate, started to pick up some small branches around the property and in between sit and rest for a little while and just enjoy being ALIVE AND BEING NORMAL!

One sadness is not being able to be there next week when my daughter Jo has her baby - I was on standby to mind by beautiful little grandkids, however with chemotherapy it is not an option due to the chemicals/chemotherapy maybe ... .  Better not to take the risk however U can bet I will be visiting as soon as I am given the clear in between this chemo regime!

The regime will be an 8 day cycle then 2 weeks off ... for about 2 months then a scan and it will be a wait and see - hopefully I will again receive a stable or better still - shrinkage message from my oncologist!  Gemzar next Tuesday in Day Chemo Ward at John Fawkner hospital where it is really a very nice place to visit thanks to the wonderful staff.

I am okay - taking my tablets for the next couple of days thanks to my carer Keith who is doing a fabulous job of reminding me of things that I had forgotten since the last chemo.  For example a salt mouthwash after every meal and before bedtime .... .

10 years ago I had this combination Gemzar and Cisplatin, then in 2010 Alimta and Cisplatin.

Once again a beautiful rainbow of love, strength and hope coming to all mesothelioma warriors around the world - You are all so brave.

A big thank to all for your strength, hope, healing vibes they give me the strength to keep on fighting for myself and everyone else and in particular those who have lost their beautiful life to this horrible asbestos cancer.

Mesothelioma can go to hell! Update from Keith this morning on my chemo.

Hi all in my email menu !

Once again, apologies if you get this nasty news 2nd hand or doubled up as it goes "universal".

We saw Louisa's Oncologist, Allan Zimet, at Epworth Hospital in Melbourne yesterday afternoon 5 Aug. following her PET scan last wednesday.  Results - new cancer tumours growing on left & right side of chest area above & below diaphragm, plus increased fluid buildup in abdominal area.

Zimet wants immediate chemotherapy so Louisa will be admitted to John Fawkner Private Hosp in Melbourne today at 1pm for an initial 2 nights. 6-8 weeks of chemo will follow.

As usual she is looking great & will fight this latest upset as she has for the last 10 1/2 years.

I may be hard to get for a few days but will keep you posted

All the best to everyone

Keith

Oncology visit/results Monday 5 August 2013 - Treatment back on the list for me!!

A freezing cold day here and a day where I kept myself busy until we caught the train to Melbourne for my visit to see the oncologist, Alan Zimet at his rooms in Epworth hospital, Richmond.

On the way we stopped in Degrave St laneway Melbourne city for a ritual of my green tea in a beautiful china cup/Keith his coffee and sat outside at the Little Cupcakes cafe 'people watching and also a toast to a good result with my oncology visit'!

My oncology visit was everything but that!!!  Alan said 'not good news, pet scan has come back with the cancer growing more ....'!  So chemo to start tomorrow at John Fawkner hospital in day chemo (gemzar/gemzidabine), then overnight on Wednesday for the cisplatin chemo to be flushed for 24 hours and most probably a PICC line put in (this will be my third picc line).

Blood tests including the mesothelioma marker was ordered and done at the hospital's pathology section before getting on the tram/train for home.  Alan said without treatment the cancer is thriving, so hopefully with chemo (pallative chemo) it will stop it in its tracks again or stabilise for awhile.  I thought that Alan would just say 'not much change since March, come back in a month'!!!

10 yrs ago for peritoneal mesothelioma I had cisplatin/gemzar (gemzidabine).   4 years ago for pleural mesothelioma I had cisplatin/alimta.   There is no other treatment option so I AM SURE that this will work again, it just has a bigger job to do this time around!

A visit to the shops tonight for my supply of cranberry juice/LSA mix/organic yoghurt, gluten free products to help me get thru this round of chemo!

Keith is in shock!  I feel for him - he is my solid rock!  Once again our world has been turned upside down!  However we will pick up the pieces and get on with the business of surviving this deadly asbestos cancer and doing it well!

Life is for living - not dying!

Weekend and visit to oncologist tomorrow!

Yesterday we slept in after a busy week spent mostly in Melbourne.  Strange to say, because of this sleep in, last night was a night where I couldn't really sleep and just laid there until I got up about 5am, made a green tea and turned the computer on. 

Saturday we went up to Mt Macedon Trading Post/General store/cafe and where we have our post office box for our mail.  As it was absolutely freezing when we left here, I put a scarf/gloves/parka/boots on and jumped in the car, when we got up to our gate ... there was a family of kangaroos standing in a row watching us, usually the whole family stand there including uncles/aunts ... however yesterday there was the big daddy kangaroo, mummy kanga with a little joey in her pouch and the little kanga next to her.  Keith went to take a photo but they were too cunning and jumped away.

Today a visit into Gisborne for the monthly farmer's market where we bought 4 Rosemary plants to replace those that died in the drought.  Now the rosemary hedge will be complete once again.   I did some pottering/weeding in the garden this afternoon, then made dinner, 2 banana cakes/bread, free range chicken in the oven for Charlie (our siamese cat) and an apple/pear crumble ... just because the oven was on and I felt like it!  Normally I cannot be bothered to do lots of cooking, I find it too exhausting whereas I used to love cooking/entertaining.  Guess my energy levels are depleted as is my breathing at times - NOT THAT IT STOPS ME LOL!

Tomorrow a visit to Melbourne for my appointment with oncologist in Richmond for results of the recent pet scan (last Wednesday) and to compare with the previous pet scan of March 2013 for possible chemo where tumours are close to heart area, my oncologist is concerned that this might be causing my depleted breathing.

I hope to see my daughter in Melbourne and little grandson as well.  My daughter is expecting her third bub next week, so I am on standby waiting to race down there and mind the kids when needed.  Yes lol I am a proud nana!

I feel for some warriors who are doing it tough at the moment around the world - all I can say is to just live in the moment and get through it, rest, go with the pain ... and always remember we are here for you.

Pet scan Weds 31 Aug 2013 - my meditation time!

This morning was my PET scan at the Austin hospital, Melbourne.  Fasting for 6 hours and allowed to drink water only.

The Nuclear medicine department is situated in a very dark hole of the hospital - a rabbit warren to find lifts, follow the blue line on the floor to a visitor lift then down a floor and entering via a door where no windows are situated, hence a closed in feeling can overtake the patient as it did the first ever PET scan held there.

My previous PET scans have been in the duration of 2 hrs to 3 hours, this one took 1.5 hours due to the new machines and rather than undressing and putting a gown on - it is now possible to leave clothes on apart from anything with zips or metal.  The radio active dye inserted lying down then on my own lying totally still for 1 hour - pure meditation time for me!  Then I was ushered into the twin domes where I had my head put in a hold and was told to lie absolutely still for 30 minutes while going in and out of these domes.

Easy peasy and out of there by midday!

Results on Monday afternoon with my oncologist Alan Zimet at Epworth hospital!

Prof van Zandwijk/ADRI meso trial TargomiRs treatment first stage late 2013

Prof van Zandwijk says he does not want to raise false hope, but he is cautiously optimistic the treatment will work.
"I think the whole concept is sound and we feel very reassured.
"While our preclinical research was confined to mesothelioma, we hope that this new approach to cancer treatment will also inhibit other tumour types."
Speaking at the launch, Federal Health Minister Tanya Plibersek said: "This will allow further research into the most promising treatment for mesothelioma yet discovered. It means that we might have a cure in a few years."
Mentioning the sadness of losing a family friend to the disease, she said: "Anyone who has been touched by mesothelioma, and there are so many Australians who have been, will be so excited about this. It's just such a wonderful day."
The trial is made possible by a $1.2 million donation from the family of Andrew Lloyd, who died of malignant mesothelioma in 2011 after coming into contact with asbestos during building renovations.

 

http://au.news.yahoo.com/latest/a/-/latest/18257214/glimmer-of-hope-in-asbestos-cancer-battle/ 

Australian scientists have made a breakthrough that brings a glimmer of hope to people with a deadly cancer caused by asbestos.
The cancer affects a small percentage of people exposed to asbestos, but it is relatively common in Australia with about 650 new cases a year.
There is no cure for the disease, which takes about 35 years to develop, and most people die within 18 months of diagnosis.
So far, treatment developed at the Asbestos Diseases Research Institute has shown remarkable results in tests on mice with malignant mesothelioma taken from humans.
Now, institute director Professor Nico van Zandwijk and his team are preparing to test the TargomiRs treatment on humans.
First stage trials start at the end of 2013 and will determine the optimal and safe dose.
"Treatment options for this asbestos-related cancer are very limited and effective new therapies are urgently needed," Prof van Zandwijk said at the announcement of the trial in Sydney on Wednesday.

Asbestos Cancer Melbourne Gala Dinner 2013 Biaggio Signorelli Foundation 1st Annual Melbourne Gala Dinner to raise funds to create awareness, earlier detection and improved treatment, and ultimately find a cure for Mesothelioma (Asbestos Cancer).

Last night in Melbourne I was very honoured to be able to attend this beautiful gala event with my husband Keith and Rod Smith/Karen Banton all representing Bernie Banton Foundation.

A black tie event, it was a good excuse to dress up, kick our heels up and enjoy a spectacular night with other like minded people who were there for a good cause - raising much needed funds for mesothelioma research.

http://www.oliviaappeal.com/About-Us/Appeal-Committees/Associate-Professor-Paul-Mitchell.aspx
Associate Professor Paul Mitchell, Olivia Newton John Cancer Centre spoke on the aggressive and deadly nature of mesothelioma and how much needed funds are very vital.  I spoke to him after his speech and about me being past my use by date as there is no treatment available for me as it is now about those who have just been diagnosed and helping those patients with treatments.   That is where the focus is on now.  The longer that I live the more likehood of running out of options for treatments due to the nature of the tumour activity.  I  did think that long term survivors such as myself living with this deadly and aggressive cancer should be acknowledged for exactly what we are - brave mesothelioma warriors making the best of a bad situation by living with this cancer and dealing with what life throws at us.

After all, being diagnosed with this cancer should not be a death sentence, let us live with it well and carry on helping others who have it, their carers and those who are yet to be diagnosed.  We are in it together as a united force.  I will keep on fighting for myself and everyone else until there is a global ban on asbestos, and when asbestos assessment, removal and disposal is heavily subsidised in Australia for all to have access to.  We need to remove all asbestos from every place in Australia because until we do that, we will continue to have innocent lives being exposed to deadly asbestos fibres.  Asbestos kills, there is no safe asbestos!

I live my life in the moment, enjoy my life and fight for what is right! 

http://biaggiosignorelli.org.au/events-2/asbestos-cancer-melb-gala-13/

Asbestos Cancer Melbourne Gala Dinner 2013

Biaggio Signorelli Foundation 1st Annual Melbourne Gala Dinner to raise funds to create awareness, earlier detection and improved treatment, and ultimately find a cure for Mesothelioma (Asbestos Cancer).

Special Guest Performance – Tina Arena
Tina Arena’s career started at the age of seven on the hit TV show – Young Talent Time. After being a household name throughout her teen years, her 2004 album ‘Don’t Ask’ won six ARIA Awards and can now be found in 1 in 4 Australian homes.
Tina has sold 8 million albums and has performed with Donna Summer, Celine Dion, Julio Iglesias, Stevie Wonder and Marc Anthony around the globe.
Tina’s career has recently come full circle as she returned to where she started in Channel Ten’s ‘Young Talent Time’, this time as an admired judge.
A wonderful career, rich in it’s diversity, one month Tina can headline the Sydney Gay & Lesbian Mardi Gras with one of her dance anthems before touring with Andrea Bocelli the next. Always humble with a wonderful working-class sensibility and a great sense of humour and humility Tina is an artist with true integrity and unwavering talent.