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.
Thursday, July 25, 2013
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!
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.
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:
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.
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
Email:
maeli.campbellmcnulty@uqconnect.edu.auCnr 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.
Sunday, June 30, 2013
Weekend of winter weather in Macedon Ranges, Victoria, Australia
Our winter is finally here after a false start of 4 weeks of reasonably sunny and mild days! Freezing cold outside, heaters on inside and sometimes at night the open fire lit with Charlie our siamese cat sitting in my favourite comfy chair waiting for me to finish on the computer and sit there with him and enjoy the warmth and television.
Keith is currently sitting there watching the Formula 1 Grand Prix ... with Charlie on his lap.
We had family over yesterday for lunch, it was a lovely day sitting around our dining table catching up on the latest with what the kids and their partners are doing. As we grow older ... the next generation seems to be catching up slowly ... and we seem to be the 'oldies'!
I found it hard to get out of bed today, very fatigued and it took until midday to come good. My breathing was a bit shallow, swelling of fluid tightness in the diagrahm area and under the chest area though nothing major that I couldn't work through myself! We went for a drive up to Mt Macedon and stopped to get our PO box mail there then did a short walk. Half way up the hill I started to get chest tightening so we turned around and walked back to the car and then home.
Later in the day Keith got the chainsaw out and cut a few fallen gumtrees while I carted the branches down to a fire that he has going to burn all the tree rubbish in the middle of the paddock. We are on nearly 5 acres of beautiful rolling countryside with lots of lovely old gumtrees that are starting to fall branches due to old age and wind/drought weather. Tonight I feel better although my tummy area is still tight with fluid. It will pass .... .
No word on my appointment with my oncologist as yet. I will phone in the morning. The radiologist, Malcolm Feigen was presenting my case last Thursday to the multi discipline medical team and then report back to my oncologist Allan Zimet. So hopefully this did happen Thursday, if not it will take place this week and my appointment will be scheduled for then.
Keith is currently sitting there watching the Formula 1 Grand Prix ... with Charlie on his lap.
We had family over yesterday for lunch, it was a lovely day sitting around our dining table catching up on the latest with what the kids and their partners are doing. As we grow older ... the next generation seems to be catching up slowly ... and we seem to be the 'oldies'!
I found it hard to get out of bed today, very fatigued and it took until midday to come good. My breathing was a bit shallow, swelling of fluid tightness in the diagrahm area and under the chest area though nothing major that I couldn't work through myself! We went for a drive up to Mt Macedon and stopped to get our PO box mail there then did a short walk. Half way up the hill I started to get chest tightening so we turned around and walked back to the car and then home.
Later in the day Keith got the chainsaw out and cut a few fallen gumtrees while I carted the branches down to a fire that he has going to burn all the tree rubbish in the middle of the paddock. We are on nearly 5 acres of beautiful rolling countryside with lots of lovely old gumtrees that are starting to fall branches due to old age and wind/drought weather. Tonight I feel better although my tummy area is still tight with fluid. It will pass .... .
No word on my appointment with my oncologist as yet. I will phone in the morning. The radiologist, Malcolm Feigen was presenting my case last Thursday to the multi discipline medical team and then report back to my oncologist Allan Zimet. So hopefully this did happen Thursday, if not it will take place this week and my appointment will be scheduled for then.
Wednesday, June 26, 2013
Very proud to accept the 2014 Alan Reinstein award (Asbestos Disease Awareness Organisation) America
The Asbestos Disease Awareness Organization (ADAO) is proud to announce that Janelle
Bedel, Heather Von St James, and Lou Williams will be recognized with
the 2014 Alan Reinstein award on April 5, 2014 in Washington, D.C. ADAO
is deeply grateful to each of these women for their dedication and
commitment to education, advocacy, and support to patients and families
around the world. http://bit.ly/14musVb
April 4 - 6, 2014 Washington, D.C.
by: Linda Reinstein
Today our beautiful Linda Reinstein, ADAO announced on facebook another recipient of this deserving and wonderful award - myself! It is a great honour to be acknowledged with this award and I thank ADAO for recognising the work that I do to raise asbestos awareness, advocacy and support globally.
The
Bernie Banton Foundation is proud its' Asbestos Awareness Information
and Support Officer Lou Williams has been recognised globally for her
untiring efforts world wide in heightening awareness to the dangers of
asbestos, and continually supporting asbestos related disease (ARD)
sufferers and their families.
Lou is a truly worthy
co-recipient of the ADAO 2014 Alan Reinstein Award. I know she feels
honoured to be receiving this award along with fellow mesothelioma
cancer survivor Heather Von St.James and the late Janelle Bedel who lost
her battle with mesothelioma only a week ago.
I wrote the following about Lou on the 19th June, I wont try to improve on it as I think it really does sum Lou up:
"Lou Williams is a legend, no not in her own mind, but around the
world, as an asbestos cancer survivor, supporter of many adversely
affected by exposure to asbestos, and an awareness advocate.
All at the Bernie Banton Foundation are proud to call Lou, not only a fellow team member, but a friend!
Karen and I call her KS ('Kindred Spirit' - As she was also to my late,
beloved Julie), but she is far more than that, she is a very special
person."
Lou is a truly worthy co-recipient of the ADAO 2014 Alan Reinstein Award. I know she feels honoured to be receiving this award along with fellow mesothelioma cancer survivor Heather Von St.James and the late Janelle Bedel who lost her battle with mesothelioma only a week ago.
I wrote the following about Lou on the 19th June, I wont try to improve on it as I think it really does sum Lou up:
"Lou Williams is a legend, no not in her own mind, but around the world, as an asbestos cancer survivor, supporter of many adversely affected by exposure to asbestos, and an awareness advocate.
All at the Bernie Banton Foundation are proud to call Lou, not only a fellow team member, but a friend!
Karen and I call her KS ('Kindred Spirit' - As she was also to my late, beloved Julie), but she is far more than that, she is a very special person."
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