Wednesday, July 31, 2013

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. 

A woman with cancer caused by asbestos is thrilled to take part in the trial of a possible cure.

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.

Sunday, July 28, 2013

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.
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!

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.


Thursday, July 25, 2013

12 days in beautiful sunny and warm Queensland, Australia

We have only recently returned from 12 days in south east Queensland catching up with family, friends and was so pleased to be able to meet up with some of our mesothelioma family while on the Gold Coast.

The first evening we attended a birthday dinner for Keith's brother - Ross who turned the big 60.  A great night spent with family and friends.  The next night he held a party and we caught up with grandkids and son Elton.  So very proud of him, he has just moved back to Queensland/Brisbane where he is working in a profession that he loves and is so good at too - Building Design.

Friday morning I caught the bus to Pacific Fair shoppingtown and met Kim and her beautiful mum Margaret.  They lost their brother/son Peter to mesothelioma.  We had a lovely time catching up and remembering Pete and his kids.

I got to spend time with my youngest daughter, Debbie and my 2 little Brisbane grandkids Lux who is 4 and little Evie who turned 3 while we were there.  We went up to Caloundra, Sunshine Coast for a couple of days and celebrated Evie's birthday there.  The boardwalk is so amazing and beach just beautiful.  I did heaps of walking with the stroller!

Monday night we visited Steve and Gail Cook in their beautiful home for a wonderful meso dinner party with Pat, Marilyn and their daughter Nicole.  A wonderful evening catching up on meso/and we all got along so well.  Thank you to Steve/Gail for hosting the night at their place.  Steve had chemo that morning while Pat was going to have chemo the next day - 2 very brave and beautiful warriors.

Tonight we had a birthday dinner party for our wonderful neighbours who very kindly look after our siamese cat Charlie when we were in Queensland.

On another note, the day before we went to Queensland I had an appointment with Dr Feigen/radiologist at Olivia Newton-John cancer centre.  He went through my last scans and said that he couldn't help me.  So back to see my oncologist next Monday afternoon and discuss possible chemotherapy around the heart area.

I have just finished skype with Jan from UK - she is doing it tough atm, my heart goes out to her.  I hope the medical team can help her get through this big hurdle she is facing.  It appears that the medical team have basically given up on her.  I know she is much stronger than what they give her credit for - she is a fighter and I love her so much.

There are others who are doing it tough around the world and my heart goes out to them.

Monday, July 8, 2013

Another beautiful moment in my life! Monday 5 July 2013

Last night I coaxed Keith into coming along to see Engelbert at Hamer Hall, Melbourne!
'The King of Romance Engelbert Humperdinck returned to Australia on his Greatest Hits & More tour, performing concerts for romantics young and old.
The consummate entertainer, with an instantly recognisable voice has released over eighty albums of tender ballads including his 1967 signature tune, Release Me (And Let Me Love Again).  
Performing a brand new show on his Greatest Hits & More tour, Engelbert will debut a virtual duet with Elton John and perform other material from his upcoming Duets album.  Alongside these new hits, you'll be entertained by old favourites,  Release Me (And Let Me Love Again), Spanish Eyes, There Goes My Everything, The Last Waltz, Am I That Easy To Forget, A Man Without Love, Les Bicyclettes de Belsize, Quando, Quando, Quando, After The Lovin, Ten Guitars, Winter World of Love, The Way It Used To Be and more.'

This will be the 5th Engelbert concert that I have seen in Australia and each concert I have just loved!  Last night sitting there listening and seeing this beautiful showman strut his music and moves (not bad for a 77 year old guy!).  I first fell in love with his music and songs when I was 17 yrs old at Hawthorn Town Hall, Melbourne, Victoria, Australia and was dancing a waltz to the tune of 'The Last Waltz' one of Engelbert's beautiful songs.  Last night I sat there and closed my eyes and thought to myself I just want to hold on to this very special moment in time, it was magical and to think 3 years ago I had no idea that I would be seeing another of his concerts!  This is what will be played at my funeral!  I am sure some people laugh at me and think I am old fashioned because I love Engelbert and his music, however to experience his concerts and the music is such beautiful therapy and the words have so much love in them.

By the way, Keith actually loved the show and the music too!

Late yesterday afternoon, the radiologist's secretary rang to arrange an appointment to view my recent scans with him, probably tomorrow morning in his rooms rather than wait until the end of April. 

Sunday, July 7, 2013

Oncology appointment Friday 5 July 2013

2 week's ago I had a full CT scan following a visit to see the radiologist, who requested a CT scan and a viewing with the Multi Disciplinary medical team on a Thursday at the Austin hospital to see what they thought and if it were possible to do some radiation zapping, as he felt it was pretty well impossible to get to the area that would need it due to being close to the liver and heart.

Last Thursday the 'team' met to discuss my case and my appointment to follow up with results was with my oncologist Friday evening (5.45pm).  My oncologist Allan Zimet told us that unfortunately the 'team' couldn't bring up online my scan results so had to rely on my previous pet scans as had been already discussed 2 months ago at a Multi Disciplinary meeting and no one put their hand up to touch me other than the radiologist who was prepared to discuss my case with me then.

Allan said the CT scan was okay, not much increase since the last one and that the team were still not going to touch me due to the spreading of the mesothelioma tumours.  Again the radiologist put his hand up for an appointment to discuss my CT scan with him and possible radiation close to the heart area as some nodules there are of concern, if he decides that he cannot do radiation then a possibility maybe of some form of chemo for the heart area only.  So back to see the radiologist Mon 29 July.

Our trip home in the car unfortunately found myself being pretty quiet while poor Keith drove in the peak hour traffic and had to put up with silence from me!  It takes a while to digest the information from my oncologist and the reality of the situation sometimes can seem overwhelming, particularly when I seem so well and yet the meso is still travelling.

Even though I meditated and went to sleep soundly, I was awake early hours of the morning/night and got up, made a green tea and sat in a lounge room chair with Charlie (cat) for a couple of hours before going back to bed and eventually some sleep.   I awoke with a tight chest and exhaustion that has plagued me both yesterday and today.  Maybe it is just the cold weather!  I know I am fine now after digesting this oncology visit.

Thursday I caught the train (coach) into the city and visited a beautiful friend in hospital who is doing it pretty tough at the moment - my heart goes out to her and family.  On a bright note they have just had another little grandchild come into their lives to love and cherish dearly.

I then wandered around the city and sat down in Degraves Lane at a little cafe with a nice china pot of tea when an old friend who I haven't seen for a couple of years walked past.  She sat down for a chat then we walked over to Flinders Station where I continued walking to meet my daughter Jo and little grandkids at Disney on Ice show - it was fabulous and to see the litte kids faces light up was priceless. 

All together for the 2 days I went on 8 trains and 2 trams!  So easy to get around Melbourne and surrounds when public transport is working!

Tomorrow is another day and one that will be just perfect!   Monday night I am taking Keith along to see Engelbert at Hamer Hall, Melbourne city!  This will be my 5th time seeing this wonderful showman and singer!  Mind you some/many people would not agree with me lol!

Tuesday, July 2, 2013

Palliative diagnosis and care for mesothelioma

When I was first diagnosed all the medical team/oncology told me it is palliative treatment only for mesothelioma as there is no cure.  That is fine, whether it is invasive treatments or not, it is how we live our lives with this palliative care that matters.

I believe living in the moment is vital for LIVING WITH MESOTHELIOMA.

Don't stress about the big picture, let the universe take care of that!  We have no control over that anyway, so why worry about it.

Monday, July 1, 2013

Mesothelioma and asbestosis nutritional/quality of life study Qld University

Today I seem to have no energy, I took my time getting up this morning and probably would have stayed longer except Charlie (my siamese cat) decided he wanted his breakfast so would jump over me in bed onto the floor then repeat this exercise until finally I got up and he got fed!

My oncology appointment is now scheduled for this coming Friday 5 July at 5pm in Melbourne - results of my recent scans and also after the multi disciplinary medical team discussion about my case the previous day.

An associate professor from America contacted me to do an email interview on mesothelioma and women.  He was particularly interested in the link with my father's exposure and ultimate death of pleural mesothelioma in 1985.

The School of Human Movement Studies, University of Qld also contacted me for more paperwork/scan details as they are doing a Nutritional status, dietary intake, body composition and quality of life of patients with an asbestos related disease research study.

If anyone living with mesothelioma/asbestosis in Australia would like to participate in this study, please contact:
Dr Maeli Campbell-McNulty
C/- Judy Bauer
School of Human Movement Studies (#26B), Room 539
Cnr Blair Drive & Union Road
The University of Queensland - St Lucia Campus
Brisbane Qld 4072

Below is an extract from a letter back to me in regards 'recruiting' volunteers living with mesothelioma/asbestosis in Australia and who would like to participate.

Hi Lou
It is wonderful to hear from you. We are very happy to hear from volunteers living interstate as components of the research project such as questionnaires related to dietary intake and quality of life could be undertaken from anywhere. The body composition component is only available for those volunteers able to attend University of Queensland as specialised equipment is required. There is very little published literature regarding dietary intake, quality of life and body composition in patients with asbestosis or mesothelioma – we hope this study will inform the development of an  intervention trial particularly for mesothelioma patients and are particularly interested in mesothelioma survivors. If you are able to assist in increasing awareness of this project via  Facebook or your other contacts, we would be most grateful.