Louise Williams Story --------------------------------------- Louise's story starts back with her father Norman. Louise Williams saw the devastating effects of mesothelioma when she watched her father die from the disease in 1985. Norman Geoffrey Heritage was born 6/1/1932 and died aged 54 yrs  on the 11/9/1985 of pleural mesothelioma. He was the youngest of eight children. ------------------------- Norman Heritage married Mildred Waters on the 14th June 1954 at St John's Presbyterian Church,  Buckley St, Essendon. Melbourne, Victoria Mildred's brother Reynold (Lou's uncle) married them. -------------------------------- Reynold, Grandmother, Mildred and Norman. ----------------------------- ---------------- They had four children Louise being the eldest. He was a great dad, husband and loved helping everyone else ----------- 1981. Dad on his 50th birthday -------------------- Norman worked in the plastering trade where he had been exposed to asbestos. Little did he know that years later he was going to diagnosed with pleural mesothelioma. ----------------------- 20th Wedding Anniversary ------------------------------- At first it was miners and tradesmen who fell victim to asbestos. Now the toxic product is stalking people at home. Every evening in the 70's and 80's, dads and husbands returned home from work and did what dads and husbands have always done: they gave their wives and children a hug and a kiss. As they did, a cloud of dust often rose from their overalls asbestos. Cheap, strong, waterproof and fireproof, it was in building products everywhere. No one realised its invisible fibres, 50 to 200 times thinner than a human hair, were working their way into people's lungs, where they lay dormant for many years before developing into the incurable lung cancer, mesothelioma. ---------------------- An early asbestos exposure for Lou Williams, could have been from her dad Norm's hugs or from washing his overalls, vacuuming his car, sweeping up the dust after home renovations. A plasterer who worked on stores in shopping centres, Norm was diagnosed with mesothelioma in 1985. ---------------------- A visit to Queensland visiting us. Dad was ill, and had just been misdiagnosed with a hernia in January 1985. Sitting with mum and their two little grand-daughters Jo and Deb (my beautiful little daughters). ------------------------ He died six months later, aged 54. Williams, however, never imagined she was susceptible, too, and when doctors gave her the diagnosis in 2003, she went into shock. -------------------- I asked, "What's going to happen to me?" and he replied, "I think you should go home right away and get your life in order. You've probably got a couple of months." The mother-of-two said goodbye to her daughters, husband and the rest of her family and friends. Then she endured surgery and eighteen sessions of chemotherapy. "I was very ill. I thought I'd die," she says quietly. ------------------- Despite enduring more chemo and surgery since, Williams is miraculously still alive. Every mesothelioma funeral she attends and there have been fifty in the past nine years reminds her of that. Most people diagnosed with mesothelioma have a life expectancy of a few months to a couple of years. "I can't explain why I'm still here," she says. She's pragmatic about the fact that it will claim her life; she doesn't plan more than four weeks ahead and treasures moments she never expected to see, such as the births of four grandchildren and her 55th birthday ("I had lived one year longer than Dad"). A new little grandchild is due in August 2013. --------------------- According to the Asbestos Management Review Report released in August, there have been 4700 deaths from mesothelioma in Australia since records began in the early 80's. It's estimated 25,000 more will die over the next 40 years. But as Asbestoswise (an information, support and awareness group) points out, considering almost everyone has been exposed to some asbestos fibres, these figures are mercifully small. More than 2500 people are diagnosed with asbestos-related diseases in Australia every year. These include mesothelioma, lung cancer, asbestosis (a condition that restricts breathing by hardening and scarring the lung) and pleural plaques (thickened patches on the chest and lung lining). ------------------------------- Lou was a founding member of the original Victorian support group when first diagnosed, and has served on asbestos organisation committees including a stint as vice president. She now works tiredlessly with the Bernie Banton Foundation on a global scale raising awareness, advocacy and support. --------------------------- Now such groups field constant calls, Facebook groups link international sufferers, solicitors specialise in asbestos-related compensation cases, and in September, the government announced the creation of The Office of Asbestos Safety. This new body aims to improve awareness, management and safe removal of asbestos in homes, offices and schools. It is not before time. One in three Aussie homes is thought to contain asbestos and, as you read this, enthusiastic young couples all over the country will be knocking down walls, unaware they're playing 'renovation roulette'. ---------------------- In the past, victims were mainly miners and tradesmen. Now, DIY enthusiasts are swelling a horrifying third wave. A NSW study revealed 60.5 per cent of renovators reported they'd been exposed to asbestos, while a study published in the Medical Journal of Australia found 35.7 per cent of female mesothelioma cases were attributable to home renovation. ------------------------- Louise's Diagnosis and Treatments 1985 to 1992 Living in Queensland, Australia I experienced continual slightly dull headaches and backaches, nothing really major just nagging ones. 1993 While living in Brussels, Belgium severe headaches.   Visits to neurologist, head scans etc all results came back 'inconclusive'. ------------------------- --------------------- 1995 Living in Christchurch, New Zealand I experienced 2 days of intense migraines.  A visit to the local doctor where my blood pressure was through the roof/sky high!  He called an ambulance and rushed me to hospital.  Following various tests including kidney tests again inconclusive results.  I was put on high blood pressure tablets, this helped to alleviate the migraines/headaches though the medical team could not pinpoint exactly what had caused all of my symptoms and said it was better to leave sleeping dogs lie! 1994 to 2003 Extreme chronic unexplained fatigue. Visits to specialists/many blood tests all inconclusive and simply diagnosed with the term chronic fatigue. While living on the Gold Coast, Queensland, Australia from 1996 to 2001 I was working full time, then eventually down to part time work where I would have to have a lie down on a bench during my lunch break due to unexplained fatigue. My iron levels etc were fine. My breathing at times would be quite shallow. 2001 to 2003 Living in Launceston, Tasmania, Australia where we ran a successful bed & breakfast (change of lifestyle), I would have time for walking up and down the hills there and along Cataract Gorge. I would find exhaustion would settle in within a short while walking and would have to rest. At this time I had a pap smear done, the pap smear result came back 'abnormal cells'. My local doctor said "Nothing to worry about, we will check it out in a year". Noticed a hard raised lump forming on the right hand side of groin area. While in Melbourne on holiday, I had ultrasounds/tests done at my mum's local doctor. Nothing showed apart from a soft tissue lump. I was told all okay and possibly due to injury. In 2001 she was diagnosed with peritoneal mesothelioma and bravely fought that with extensive surgery and chemotherapy. 2003 We returned to the mainland and back to Melbourne, Victoria, Australia early 2003. I was quite fatigued still, the "lump" appeared to flatten into the groin area, looked slightly raised but nothing serious thought it must be my imagination! My breathing appeared shallow though nothing to worry about October 2003  One night I experienced the worst pain imaginable coming from my spine through to this 'groin area'.  By the morning it has gone.  I went to see the doctor who I had seen about this problem in 2001. Her comment was 'oh Louise, it hasn't gone away yet?'. I asked her to refer me to a specialist. The specialist asked me why no one had ever ordered a fine needle biopsy to the raised groin area! He ordered this on the Monday. On the Thursday night at 8pm, while home on my own he rang me. 'Louise, there are tumour type cells there, I need you to come in to my surgery in the morning and I will mark it ready for surgery'. I said to him 'What does this mean?' His response - 'Its malignant cancer, possibly ovarian!'. November 2003 Blood tests done, waiting for hospital appointment. Hospital operation overnight. I woke up and was told 'Not ovarian cancer, it is a mystery, will know lab results in a couple of days'. Operation involved taking as many tumours out that the surgeon could get at in the linings of stomach, abdomen and diaphragm, plus heaps of flushing with a chemotherapy agent. The groin one was size of a golf ball and was still growing. Visit 2 days later, Keith and myself went back to see the specialist, Mr Robert Pucius confirmed that is was a 'deadly and aggressive cancer' He looked at me with tears in his eyes and said 'Louise, I am very sorry to have to tell you this news, it is me mee soo th th ...'! I looked at him, he was having trouble pronouncing the word. I said to him 'Its not mesothelioma'! He said 'Oh you know about that cancer.' I said 'Yes, asbestos cancer, my dad died of pleural mesothelioma in 1985'. His response was 'Oh I am so sorry, I'd advise to go home and get your affairs into order. I will refer you to an oncologist, there are two that I would recommend I asked him how long I had to live. He said 'not long, this is an aggressive cancer and your tumours are showing to be very aggressive. Possibly a couple of months to a few months depending on treatment and how you respond'. We went home, fell into a heap on the bed cuddling each other and basically feeling very numb and like our life was falling apart. I could have handled any other cancer, however not MESOTHELIOMA. My dad had worked with asbestos products I hadn't done this! We stayed huddled on the bed for what seemed like a few hours, Keith would say to me 'you have to ring your kids as they will be worried sick'. My response was 'not just yet, I can't tell them'. ---------------------------------- A gorgeous girlfriend, Sue knocked on our front window and called out 'Louise I know you are in there, come on open the door, I have your favourite muffins'! Thank you Sue, I'll never forget those magical words! It brought us out of our nightmare few hours huddled/cuddled on the bed back into reality. Keith said to me you have to ring the kids, I said to please text them and I will ring later on when I was able to breath without it seeming like I was choking with emotions and anxiety. My pain from the operation made me very weak and in pain, and I remember lying in bed one day and thinking if I just close my eyes and not wake up I'll be fine doing that. Just to try and bend down and put a shoe on my foot was unbearable pain. To have a shower took all of my energy. Next step was saying goodbye to all family and friends around Australia. Lots of beautiful hugs and crying for a few weeks until January 2004 --------------------------- John Strano's story and my commencing to take control of living with mesothelioma One night we were on the Gold Coast at a friend's home in Robina having dinner. This friend, Kevin said to me 'oh you should go and visit my mate John Strano, he has asbestos cancer and still alive after a few years He is living on the Gold Coast'. So the next day we rang John and visited him at his home. He told his story to us. 5 years ago he was diagnosed with breathing difficulties/a cough and coughing up blood/pain in his chest and went to see the doctor. He ended up in hospital where two specialists told him he had asbestos cancer and was going to die. One doctor wanted to operate, the other doctor wanted to wait and see until the pain took over then give palliative pain relief. John had been a deep sea diver and it was through the equipment he used that contained asbestos was where his exposure happened. John went discharged himself, went to Burleigh Beach dived in and swam around to the next cove. Coughing up blood and finding it hard to breathe, he thought to himself if he made it then he would heal himself. He made it. That was the end of 1999. Today (2013) he is alive and reasonably well. Winter plays havoc with his health, so he takes himself off to bed and armed with many natural healing foods/drinks he lies low for a few weeks. John said to me that he believed that a natural diet and calming mind was very important to survive any length of time with mesothelioma. He did not believe that having medical treatment helped, in fact his feelings were it did more harm than good. ------------------------------ January 2004 My Chemotherapy story with Peritoneal mesothelioma cancer. The visit to see Allan Zimet, oncologist was a very emotional day for Keith and myself. I was in turmoil after seeing John in Queensland, what should I do? keep my oncology appointment and have medical treatment or follow John's advice and his strict health regime and have no medical intervention! I decided that I wasn't brave/strong enough to just go it alone without medical treatment, however I would also heal my body myself with other natural organic treatments, keeping my mind in a positive state throughout my healing and living in the moment, letting the universe take care of itself. At last the day arrived for my very first appointment with Allan Zimet, a leading Oncologist in Melbourne, Victoria. ---------------------- It was a very emotional day for Keith and myself. Allan looked at my scans, asked a few questions, ordered some more scans and blood tests and said he would like to commence chemotherapy, a combination of cisplatin and gemzidabine for 18 sessions. I asked him if he had any long surviving mesothelioma patients on his books to which he responded, "yes I have 4, one died recently that lived with meso for 8 years. Currently 2 who are up to the 8 years mark and one who is now up to 5 years."  I asked him how long he thought that I had, his comments were 'a couple of months if treatment does not work, a couple to a few months maybe a couple of years if treatment is successful in stabilising/shrinking the tumour activity'. Some patients decide not to ask these questions up front, for me I like to know what I am up against from the start. It is the 'average statistics' not always true! I was determined to get to 5 years and assess my situation then. So within a week I commenced chemotherapy treatment. Chemotherapy consisted of day chemo for gemzidabine and overnight hospital stays for cisplatin, plus weekly changes of my 'port' that was put in place for the chemo needles to go into rather than trying to get a non-existence vein that would continue to just collapse making the huge chemo needles pull out and the procedure would be tried again making my veins/arms very painful. --------------------- Honestly have no idea how I got through the chemotherapy, I remember the first few days of just getting through them by following the instructions to a tee with steroids, anti nausea meds etc and trying not to throw up, trying to get some sleep, and to calm the anxiousness of my situation as this was enhanced thanks to the steroids. As time went on with my treatment I lost more weight, looked ill and couldn't regain my strength. Finally the chemo was over, my port taken out and the final scan done. Shrinkage had happened. That magical word for meso! SHRINKAGE. --------------------- So within a week I commenced chemotherapy treatment. Chemotherapy consisted of day chemo for gemzidabine and overnight hospital stays for cisplatin, plus weekly changes of my 'port' that was put in place for the chemo needles to go into rather than trying to get a non-existence vein that would continue to just collapse making the huge chemo needles pull out and the procedure would be tried again making my veins/arms very painful. --------------------- Honestly have no idea how I got through the chemotherapy, I remember the first few days of just getting through them by following the instructions to a tee with steroids, anti nausea meds etc and trying not to throw up, trying to get some sleep, and to calm the anxiousness of my situation as this was enhanced thanks to the steroids As time went on with my treatment I lost more weight, looked ill and couldn't regain my strength. Finally the chemo was over my port taken out and the final scan done. Shrinkage had happened. That magical word for meso! SHRINKAGE -------------------- My oncology visits were now down to fortnightly in place of weekly. Eventually two monthly visits were the normal procedure for me unless something presented itself then I would give my oncologist a quick ring and an appointment arranged, usually followed up with a full CT/Pet scan, blood tests and a visit back to see my oncologist for results. ------------------------------- Then in 2009, Lou received a second blow she had developed pleural mesothelioma. Lou now has the distinction of having a very rare and unusual case of mesothelioma as her peritoneal mesothelioma is totally separate from her pleural "outbreak/strain" of mesothelioma. Once again, Lou and her family faced an aggressive course of therapy to battle her mesothelioma. Through care from "her very brilliant oncologist (Allan Zimet) and cardiothoracic surgeon (Julian Gooi)," Lou endured three major operations,  a three week stay in the hospital, and 16 sessions of alimta/cisplatin chemotherapy involving overnight stays in the hospital. ------------------ Last round of chemo. Fitzroy Garden. 2010 --------------------- Keith and Louise ------------------------- Enjoying our holiday in Nice, south France very much. Going too fast! Catching the Euro bus to Antibe and Cannes tomorrow. Slight tightening in my lung/chest area probably just fluid escaping! Just have to pace myself myself and just get on with the day. December 1st, 2010 Saw my oncologist for results tonight of my big scan/mesothelioma marker blood test/CA125 and liver function tests meso marker not back yet however all other results still same as last time - yay! Still cruising and doing well according to my oncologist !!!! February 24, 2011 A good report from my oncologist yesterday, blood tests good. The meso marker had not come back from the lab however the other tests were fine! Next visit in three months. April 5th 2011 ------------------------ July 20th, 2011. I feel guilty for getting a good report from my oncologist last Wednesday after a 'false alarm'! Appears no tumour(s) in bowel My oncologist cannot explain it other than to say 2% of PET/CT scans show up like this on rare occasions! He said possibly elsewhere outside bowel however for moment to 'leave it' and to come back in two months and have blood tests done. September 21, 2011 A good report from my oncologist this evening! 'Going well Louise, come back in three months instead of two months for your next visit blood tests looking good June 2nd, 2012 Yay! It is 2 years today since I finished my last rounds of chemotherapy in hospital yay! It is also our 11th wedding anniversary! We are celebrating in Hobart tonight! Now, it is nearly four years since completion of her last round of chemotherapy and Lou has barely missed a beat in enjoying her life with her family. Lou is a mother to six children (2 beautiful daughters) and (4 great step kids) and proud Nana/Nan Nan/Nanalou to four beautiful little grandchildren, seven step grandchildren and two step great grandchildren. ----------------------------- Photo taken November 2012, Nice, France --------------------- December 10th, 2012 near Melbourne, Victoria. Well!!!!!! GOOD NEWS!!!!! Cancer stable after two mths!!! In other words it seems to have halted its aggression for the moment so no surgery/chemo atm and to come back in two mths unless something happens in the meantime! Alan (my oncologist) said it is quality not quantity that matters! So excellent news - I am really working on staying well and keeping it shrunk. There is more thickening which means tumour build up however it is not racing ahead atm! Thank you to everyone for your beautiful and positive words, thoughts and prayers. I luv U all! xx ----------------------- Thursday, February 7, 2013 After one lost blog of a couple of year's ago I have finally started a new one and this is my first entry! Every morning when I wake up and ask myself what is on my list of things to do today, make a blog pops up always and I remind myself 'today is the day'! However up until now it has been in the too hard basket. Not sure what I will write in this blog as so much has happened over the last few years, in particular with mesothelioma and asbestos. Random thoughts I will jot down from time to time and try to put dates to these thoughts. Depending on how exhausted I am will also determine how much blogging that I do. ---------------------------- Sunday, February 24th 2013 ---------------------- A slow start for today just trying to grab back some lost energy, no doubt an earlier night tonight, meditation and waking up tomorrow after a goodnight's sleep will see me regain my energy levels! This is part of living with mesothelioma I go with the flow while my energy levels are good I keep on going and work thru tiredness, usually it works, sometimes I have to stop and smell the roses for a day or so! I woke at 7am and couldn't lie in bed any longer, got up, fed our beautiful siamese cat Charlie with his brekkie (free range chicken that he loves), ----------------------------- -------------------------- Made a green tea and toast for myself then sat in my comfortable chair and watched TV to get the latest headlines and also see if it will be a high fire danger day here Luckily there are not major outbreaks of fires close by, although there have been a few started by 'nutters' most of these have been able to be contained thanks to the dedication of our CFA (Country Fire Association) members and volunteers. Later today - depending on whether it is safe to return home or if we need to evacuate due to the high fire warning will determine what the day brings! ---------------- March 3rd, 2013 Time to call my oncologist Last night I had a very uncomfortable sleep. Went to bed with a back pain coming through to the right lung area that started a few minutes prior to getting in bed. Within a couple of hours the pain was thick and fast coming with a throbbing sensation, similar to the pain when peritoneal, and then again when pleural meso presented itself all those years ago. Both times it was overnight and then went away in the morning. Enough to sounds alarm bells for me. This time, pain tablets have done nothing to relieve it and the only mild relief was my old faithful wheat bag that I heat in the microwave for a few minutes and then put it on the area of pain to give warmth to that area. The pain has now eased so I will contact my oncologist and get an appointment this week to discuss bringing the PET scan forward before I go to Washington as I need to know what is happening so that I can deal with it. Living with Mesothelioma is dealing with what presents and getting on with daily life in the meantime for me! -------------------- 26th March, Central Park --------------- Below is an extract from a recent article in March 2013 written by Nancy Meredith on MesotheliomaHelp.net In addition to travelling extensively throughout Australia and Europe, Lou has travelled to the United States to Santa Monica, Los Angeles, Disneyland and San Francisco, to Chicago, up the Michigan coast, and to Niagara Falls. When asked what her quality of life is, Lou responded with a resounding, "Excellent" She added, "I live in the moment and let the universe take care of the big picture." Although Lou has endured countless surgeries and rounds of chemotherapy, it hasn't crushed her spirit. If anything, Lou's energy is buoyed by her passion to prevent others from having to suffer the same consequences of asbestos as she and her father. ---------------- Lou is one of the best known mesothelioma advocates in Australia, and perhaps the world. As a representative of the Bernie Banton Foundation, an Australian foundation that provides support and information to asbestos-related disease sufferers and their families while raising awareness of the dangers of asbestos, Lou will take her advocacy to Washington, DC later this month as a participant in the 9th Annual Asbestos Disease Awareness Organization's International Asbestos Awareness Conference. --------------- Monday, April 1, 2013 Lou's Washington DC Asbestos (ADAO) global conference speech. -----------------   ---------------------- Hi all. Well I am back home safe'n'sound after 11 wonderful nights in America! As part of the Bernie Banton Foundation team (BBF) we all met at Melbourne airport on Tuesday 19 March 2013 7am. Geoff Fary, John Carter, Rod Smith, Karen Banton and myself. After a quick check-in and through customs we were ready to board our 10am flight (Qantas A80) bound for LA. Thanks to John, Rod and Karen I was able to secure three seats together making the flight bearable to lie down, sit up and more importantly stand up when I felt my breathing getting tighter. We landed safely on Tuesday morning (LA time) after a 15.5hr flight and a taxi to the beautiful art deco Georgian hotel. ---------------- ----------------- The ADAO 9th conference officially started on Friday, however by being there a day earlier we were able to make contact with lots of wonderful people who were attending the conference so by the time the conference started we were all old friends who had actually met in person rather than on face book/emails. -------------------- Heather Von St James and Lou Raya Bodnarchuk, Louise and Ivana Mihajlovic --------------------------- A great conference to raise global awareness and one that I am so proud to have been able to attend. I feel that our BBF team did us all proud and it has continued to keep Australia on the global map with raising awareness, advocacy and support ------------------ ------------------------- Sat morning breakfast, registration and 30 speakers from around the world. A very proud moment when Karen was presented with her inspirational award. Geoff was the last speaker and was absolutely wonderful in what he presented. Australia is really at the forefront of asbestos education, advocacy and awareness! Sunday brunch with keynote speaker Karen presenting a wonderful insight to her life with Bernie. ------------------- Karen Banten and Rod Smith ---------------------- I followed with my speech and then presented an award to Linda Reinstein on behalf of all the mesothelioma warriors around the world. April 3rd near Melbourne, Victoria Keith and myself saw my oncologist Allan Zimet this evening. All went well, long talk. CT scan before next Wednesday to see if any progression since 2 weeks ago and if there is any fluid. I am happy with this. I am in control for the moment! xx ------------------- 24th April Now, my visit on Weds to see my oncologist Allan Zimet and see what the medical round the table team at the Austin Hospital had to say. Basically the jury is out. they cannot decide/agree what to do operate/chemo. Malcolm Feigen was there and put his hand up for me to come and see him in May for an appointment and discuss radical radiation treatment to the diaphragm area for starters. As Allan said 'quality not quantity and cancer still growing'. I am happy for the moment and most importantly IN CONTROL! At the moment my pain is on hold and breathing. I am working through this at the moment. --------------- 21st May My mesothelioma is having a respite holiday in Tassie! We have been here for 3 weeks now and I am feeling very relaxed and so it my meso. Beautiful walks along the beach, lots of reading and pottering in the garden. Drives in the beautiful countryside to Launceston (Cataract gorge walking) and Hobart (Mona art gallery) plus catching up with friends etc. --------------- Visiting our favourite cafes with views of the Tamar river. Go back to the bad pain I was experiencing prior to my trip with Bernie Banton Foundation to Washington for the ADAO annual asbestos conference when it was a case of quality over quantity of life and trying to get a balance of this through my mind (mental and meditation) and medication. I was so glad that I went to America, at the time I felt if it was the last thing that I ever did then I had achieved so much by just being there and hopefully helping put Australia on the map with the Bernie Banton Foundation as to what we are achieving here with awareness, support, research and advocacy. I cannot thank BBF for giving me this opportunity. --------------- Today we lost another beautiful warrior in the UK My heart goes out to his family. May he be at peace surrounded by beautiful love. So many living with an ARD (asbestos related disease) are not travelling well at the moment. My heart goes out to them. We cocoon them with love, strength and hope. Today we drove to Launceston, walked around Cataract Gorge, had a drink there in the sun and watched the peacocks and their beautiful feathers. I am off to bed, tomorrow breakfast at Beauty Point overlooking the Tamar River. June 2nd A week of heartache thanks to deadly asbestos! More beautiful lives have been taken early thanks to deadly asbestos and pure greed of those who knew that asbestos was deadly and did absolutely nothing to warn innocent people of these dangers. Instead they chose to mine and use asbestos in everything possible without warnings that asbestos exposure is deadly. To name a few beautiful warriors, Debbie, Helen, Noura and more recently Janelle. Janelle (USA) lost her life at the young age of 37 yrs! ------------------ 15th June This morning at the Olivia Newton-John Cancer Wellness Centre for my appointment with the radiation specialist I was lucky to catch up with Diane (a beautiful meso warrior) who was also there for her follow up appointment with her two daughters Amanda and Briony. June18th My results from yesterday's visit to see the radiologist more CT scans needed early next week then back to medical oncologist for results. Tumour activity is also now near the heart, a bit closer to the liver, in right diaphragm and some in my back near spine So the bloody thing is growing. However I still alive and kicking! Janelle with her husband Andrew and son Carson. How cruel is asbestos and greed!! We must continue to globally ban asbestos, ban the mining, production and use of asbestos and also heavily subsidise assessment, removal and disposal of this terrible and deadly product before it kills many millions of innocent lives. There is no safe asbestos, asbestos kills - simple as that! So many people think that as they have been exposed to asbestos in their lifetime that they are immune to getting an ARD (asbestos related disease) Well unfortunately for many of these innocent and naive people it may be wrong Usual time until diagnosis can be 10 to 40 years, and also leading up to their diagnosis they may experience strange symptoms, mine were bad migraines and chronic fatigue to name a couple of things. Minimal exposure is possible to getting an ARD, there is no hard and fast rule that says the exposure can be minimal or maximum. Asbestos does not separate, it grabs whoever is in its deadly path and laughs in our faces as does the greed of some parasites who feed of it! ---------------------------- --------------------- A good opportunity to grab a photo. Amanda Lee Diane, Lou and Briony Duff-Tytler. I had my appt this morning with the radical radiologist, and basically because my tumours are starting to form up/pleural/heart and peritoneal and close to liver/around heart he is thinking twice about giving me any radiation. A CT scan/round table talk with my oncologist and medical team to discuss if he can do anything There is also a slight possibility of a phase 1 clinical trial June 30th, 2013 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 diaphragm 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 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. 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 will 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 Monday, July 1st, 2013 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 5th July at 5pm in Melbourne. Results of my recent scans and also ---------------- Tuesday, July 2, 2013 Palliative diagnosis and care for mesothelioma When I was first diagnosed all the medical/oncology team 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. --------------- 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 two 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 29th 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. Altogether for the two 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! ------------------------- Thursday, July 25th, 2013 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 shopping town 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 Two very brave and beautiful warriors. Tonight we had a birthday dinner party for our wonderful neighbours who very kindly looked 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 at the moment, 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. ------------------- 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. Those that think I should be dead because their partners/parents have been taken much sooner (such as my dad too) to mesothelioma need to remind themselves that I am a fighter and also continue to fight for their loved ones who are no longer able to do so thanks to deadly mesothelioma. I stand up for what I believe in and fight for justice namely asbestos awareness, advocacy and support! 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! Pet scan Weds 31July, 2013 My meditation time! This morning was my PET scan at the Austin hospital, Melbourne. 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. ----------------------- Sunday, August 4th, 2013 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. --------------------- Monday, August 5, 2013 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'!!! Ten years 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 through 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! -------------------- 5th August, 2013 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 5th 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 ---------------- Tuesday, 6th August. Quick action, just heard from oncology staff being admitted to hospital at 1pm today for chemo rather than day chemo/home then back tomorrow -------------------------- Tuesday 6th 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 prior to the cisplatin and while it was going into my veins lock jaw of my mouth/neck 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, Two 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, and felt slight nausea coming on. However I 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 sat and rested 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 you 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 Ten 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. -------------------- Thursday 8th August 2013 Today it was a very cold winter's day here overcast, windy, wet and freezing! One of our foam seats from the patio got wet so I put it on the clothes airer by the reverse cycle air conditioner. Charlie climbed up and went to sleep with the heater on him! A very smart Siamese cat! --------------- Sunday, August 11th, 2013. Mesothelioma chemotherapy ten years ago same treatment - a nightmare for me! Today is day five since leaving the hospital after heavy dosages of Gemzidabine (gemzar) and Cisplatin. I should be feeling on top of the world! Following religiously the medications after coming home including dex (steroids) and anti nausea meds I have had side effects. Lucikly no nausea thanks to the heavy internal dose ages given in hospital as well. Constipation has been my biggest problem - I have tried everything and still no luck, will ring the oncology ward today and also drop into the chemist again. My skin is swollen, and bright red and I feel very bloated! The cisplatin does this to me, however I did think that I would have coped by now and been back to normal health! Ha! what is normal health living with mesothelioma !!! Living with mesothelioma when something presents itself I deal with it, that includes a visit to my oncologist to see what he thinks. In my case last week - I was FINE, slight breathing problems so a pet scan was ordered. Bingo - fluid/tumours increasing immediately, chemotherapy the following days to see if it will STABILISE for a while! Two weeks ago while in Queensland everyone said how well I looked. If you saw me today it would be another story. Sunday 11th August, 2013 Early this morning at 3am, while washing my hands and looking in the mirror I saw my own beautiful mum. Not the mum that I really want to remember when she was ill and dying of dementia and a total vegetable locked in her body. Mum was staring back at me, it was me in the mirror and Mum was there to wait for me. I said to Keith 'Mum is coming for me'! What a horrible thing to say to my beautiful husband, my soul mate who has been on this mesothelioma journey with me all the way. Every step of the way as a team. His beautiful soul mate being taken from his life thanks to asbestos and not being able to fix my problem To keep me alive and well, enjoying our time together in old age with family, friends and travel. When I said this to Keith, a flash came into my mind thank goodness and I said 'Mum is here to help take my pain away and help me deal with this chemotherapy', she doesn't want me to join her for a long time! I am sorry warriors around the world that this posting sounds grim, it is just a fact being on chemo. On another note, family and my cousin from Sydney came to lunch yesterday. A special thanks to my beautiful sister in law Cheryl for making it so special with her cooking, preparation and flowers She took over where I would one time have loved to be doing this for everyone, pampering them and making everyone feel special and loved. After they left, Keith, Charlie (our Siamese cat) and myself took, and a cuppa out to the balcony, sat down and looked out to our gorgeous view Sun shining, the garden coming into spring flowers and the view of the mountains in the background - and said this is heaven living here! I then pottered around in the garden transplanting violets/forget me knots and getting some tiny weeds out of the ground I felt good being in nature! ----------------------------- ----------------------------- Today will be daylight soon and another day, windy, blustering and wet! I look forward to the daylight when my mind is not playing havoc with this chemotherapy! To all my meso warriors, carers and others around the world. - I luv you unconditionally and may you be having a beautiful day ------------------- Tuesday, August 13th 2013 Chemo delayed due to platelets being low Yesterday (Tuesday) we made the round trip to Melbourne (170kms) to have my third dose of chemotherapy treatment Gemzar in day chemo ward at John Fawkner Hospital. Day chemo greeted us like old friends, this is my third round in 10 years and most of the staff are still there making patients and family very welcome. We have become very friendly with some of the staff over the years and always drop in when visiting the hospital. My PICC line was dressed, it is slightly bruised, however due to, being a week old this is pretty normal. Bloods taken, Keith took them to pathology (next door building) while I made my way across to see the oncologist. He said "because of the very heavy dose of cisplatin/gemzar last week. Your system is toxic, we will see how it goes, gemzar today." I asked him what my chances of survival with treatment and he said " I am pretty confident a year or 2, maybe 5 yrs". I said I am happy with that and will get through it again! Keith brought in the blood results and straight away my onco (Allan Zimet) said "chemo off this week due to low platelets, come back to have picc dressed next week and see me to discuss when next chemo"! Home via Le Fruit 'N' Vege organic cafe/fruit shop for a kiwi fruit smoothie for protein, feeling very fatigued and body starting to ache Charlie and myself sat in our comfy chair by the open fire place until about 9pm then went to bed NO COMPUTER lol until now 2.48am! So, with the delay in chemo for at least another week my immune system will have a chance to get stronger! I am happy with that! When we arrived home the most beautiful flowers were waiting for us. A big thank you from the bottom of my heart to Jan and Gary in UK, your gift means so much, just knowing that the love from U guys has come half way around the world and is now sitting in a beautiful vase on our coffee table I can feel the love. --------------------- ------------------------------ Wednesday, August 14th, 2013 Day 8 after 2 chemo treatments. I am feeling like bile is coming up and not tasting too good! Not a pleasant feeling however one that will pass eventually. Sleep was from 10pm to 2.30am so improving each day. My face is still slightly swollen and I feel bloated, otherwise feeling much improved! This morning when the sun comes up, it is now 4am, we will be going out in the car. Where we live it is just so beautiful especially at this time of the year. ----------------------- ---------------- Each afternoon I am pottering in my garden, getting a few small weeds out before they grow into a problem. transplanting violets/forget me knots that are now showing their little heads everywhere and just enjoying being with nature. Yesterday afternoon when the sun came out for a little while I did potter, feeling quite weak though and I was exhausted afterwards however pleased that I had achieved this small and enjoyable task. ------------------------------------- ----------------- To all the brave warriors and others around the world my love, strength and heart is with you. We are excitedly waiting for the birth of another beautiful little grandchild. could be anytime this week! Keith's daughter, my beautiful step-daughter. has announced that she is expecting her new bub in Feb 2014. We are so happy for her. ---------------------- Wednesday, August 21, 2013 Being alive with mesothelioma and celebrating the birth of a new grandchild. My daughter Jo gave birth today to a beautiful and healthy little boy. I am going to visit tomorrow and have my first cuddle. So looking forward to doing this. Also, today I have turned the corner. Two weeks since my last two lots of chemo, and my side effects have eased, apart from shallow / tight breathing and slight bile / metallic taste. So my immune system is now getting strength again and ready to have chemo. Next Tuesday (gemzar) and Wednesday overnight in hospital for the cisplatin. Ten years ago when I actually started having palliative treatment for mesothelioma, I so wanted to be here to see my little grandchildren being born. I am now up to the count of five! Now my wish is to see every one of them start school. then after that we will see what the next milestone will be. Through sheer hard work living with mesothelioma. I have made it this far and am hoping for a further long time still! ---------------------- 27th August 2013. Better start to get ready for my day of chemo in Melbourne today /Gemzar and then overnight in the hospital tomorrow night for more chemo/Cisplatin and the 24 hour flush! Not looking forward to both treatments however no choice if I want stabilisation of the aggressive nature of mesothelioma ------------------- August 28th, 2013 Blood transfusion - a week in my life! Last Thursday I made the train/tram/tram journey to Melbourne and visited my daughter and little grandkids and most important with this visit - my little one day old grandson Oliver! I had a very special cuddle and took photos on my new little smart phone only to delete them by accident when I got home! Whoops!! By the time I boarded my last train to come home I was totally exhausted and it took the next two days to get my strength back. Yesterday Tuesday we fronted up at the day chemo/hospital for my weekly PICC dressing, bloods taken and across to see my oncologist for the okay to have chemo. No luck as I was anaemic and my white blood cells way down so NO CHEMO HOWEVER A BLOOD TRANSFUSION WAS ORDERED IMMEDIATELY. So 4.5 hrs of sitting there having two lots of blood, we arrived at day chemo 11am and left at 6pm a long day for both of us. A good friend who also has peritoneal meso came for a visit part of Lou's team! Keith and him sit there while I have my PICC cleaned and chat away then we all go over to wait in my oncologist's rooms. All week I have been experiencing bile taste/extreme breathing difficulty and tightness of the chest. Tonight I seem to have turned the corner thanks to the blood transfusion, no bile taste and the breathing has eased. The next side effect is my hair falling out today maybe by tomorrow it will have stopped. Chemo back on the agenda next Tuesday for gemzar/day chemo, then the following day overnight in the hospital for cisplatin/24 hour flush. http://www.fibreaware.org.nz/louise.htm The above link is a story of my dad and myself on Deidre's website in New Zealand. Well already for chemo today chemo delayed until next week due to my being anaemic and low white blood count! So I had a 4.5 hour blood transfusion this evening! Oncologist said my shortness of breath tightness is probably because of this. I hope so Well my hair started to fall out slowly this morning At least I won't have to have a haircut or or have it thinned out for a while! ----------------------- Monday, September 2nd, 2013 Chemo twice this week. I have built my immune system up and my body is ready to face further chemo tomorrow (gemzar) and again overnight in hospital on Wednesday (cisplatin), then gemzar the following Tuesday. I am not looking forward to this round of chemo however there is no choice but to have it! Yesterday in Australia was father's day (dad's day) and happily celebrated by most dads. Today is Keith's birthday and a very special day celebrated with family and good neighbours. Chemo is so hard on the body, mind and immune system. It also is not easy for our partners/carers to sit back and hold our hands thru this ordeal. They live the journey of mesothelioma with us all the way, coming to appointments, looking after us at home and in the hospital when needed, supporting others when they phone, email and turn up in person. We both crave for a normal day when we can forget about meso, treatments and just live in the moment. Just living in the moment is so important to do this - we cannot plan for our future - it has been taken away from us, we can enjoy each waking moment and take time to smell the roses and may there be many more days like this for us and others living this journey! -------------------- 11th September 2013. Chemo cancelled today due to low bloods, nausea this morning and back pain. CT scan 23rd September, then reduced doses chemo 24th and 25th Sept. Will post on my blog tomorrow. We have lost another beautiful warrior, Barry in UK and also a beautiful warrior Lyn in Maryborough Australia. Both are free from pain --------------------- Thursday 12th. September. I have started to come good and feel normal again apart from a bile taste coming up from my tummy area This now comes and goes. Today we went for a country drive and this afternoon I potted about in my garden. I am planting more lavenders, olive trees and red petunias to go with our French inspired home. Weeding is a big problem at this time of the year (Spring) however slowly I am getting there. Back to the hospital tomorrow for my picc grease and oil change. When having chemotherapy - there are so many things to consider for the patient and also their partner/carer - who both have a rough time on this journey of sheer hell. One minute your body/mind is okay and then all of sudden the chemo drugs/strong medication kicks in and bingo a roller coaster of a ride for both until the tide changes as did mine on the 10th day when I felt normal again. This week is about getting my immune system built up to cope with the next lot of chemo on 24th and 25th of September. --------------------- Monday, September 16th, 2013. Life is good! Good soaking rain here fabulous for our garden and all of the plants that are coming up due to our beautiful Spring weather, plus the new plants that I have been busy putting into pots and in the garden. In a month it should look wonderful then lol our hot dry weather will start once again and we will have to be careful with the tank water and hope we get rain then for the garden and to fill up the tanks however that is a couple of months away thank goodness. Well today's visit to day chemotherapy ward at John Fawkner Hospital in Melbourne took an hour by car. Good traffic flow and we were there on time for our appointment at 11am. Picc actually had some water in it, not sure how this happened and luckily it must have happened today when having a shower as I have plenty of sterilised waterproof bandages on it. The nurse Jess said that if it had happened a couple of days ago my arm would have been very itchy. Once the picc was cleaned, dressed and flushed we were allowed to go. Keith had a doctor's follow up appointment for his PSA reading (follow up from his robotic prostate cancer operation in January 2013) and results of xrays/ultrasounds ALL CLEAR AND PROSTATE READING UNDETECTABLE! Yay good news and life is good! I have made some lemon sponge mini puddings with some beautiful free range eggs from friends and lemons from a friend's tree as we are going across to our neighbour's home soon for roast pork dinner and to sit by the fireplace and have a chat and probably a glass of vino! To all my beautiful meso warrior friends, their family and carers who are not well at the moment my heart goes out to them and I am sending you all a beautiful rainbow of smiles, love and strength. Also to my beautiful girlfriend in NSW who is not doing too well. I wish that I could just pop in with some muffins and give you a big cuddle like you did with me 10 years ago! Charlie (our siamese cat) brought in another little baby rabbit yesterday morning through his cat door. Luckily I was able to hear him and he quickly shot back outside the door and hid his prize somewhere in the garden. --------------------- Friday, September 20th, 2013 Weekend before Scan/Chemo next week! We have had 3 beautiful days in the spa country My CT contrast scan will be on Monday 23rd Sept morning after the PICC line has been dressed and bloods taken. Oncology visit Tues 24th Sept for results and no doubt chemo, then chemo overnight on Weds 25 Sept. Not looking forward to this week coming! ----------------------- Monday, September 2rd3, 2013 Scan good results and change of chemo! This morning while driving to Melbourne I knew in my mind that I did not want to continue with this chemotherapy regime! Cisplatin (this is my third time in 10 years of having this heavy metal drug) I know, is becoming toxic in my system and both times that I have had it since August 2013 I feel absolutely terrible like I am going to just curl up and die, the pain is unbearable, my weakness is awful and there is just no way of getting thru it for the 10 days after receiving it overnight in hospital as it has to be flushed through my body for 24 hours as it can be very damaging to all the organs. I told Keith my news and I think it really threw him for a sixer! As I just sprung it on him! He knows that without having chemotherapy my chances of quality and quantity survival are minimal and went into slight shock mode! However he did say that he would support my decision whatever I wanted. I did say to Allan that I was good and wanted to discuss the scan and treatment with him. He smiled and said "of course Louise, I am sure you do!" A wait in my oncologist (Allan Zimet) waiting room was only about 20 minutes. Allan looked at me when we were called in to his office, he said how was I and that he felt (as did Keith too) that I am looking better now than the start of August when I commenced chemotherapy (cisplatin/gemcidibine) after a three year break (cisplatin/alimta). We looked at the scan together comparing the previous one. No significant changes - including no further fluid. He did say that a pet scan in 2 months will be better to compare with this CT scan. I explained about the cisplatin and the feeling that I was like death warmed up when having it and I felt that my system is too toxic after 10 yrs of it. I said that I don't want anymore chemo and what did he think of this choice! He said 'well without the chemo my chances of quality and quantity survival will be minimal'. He is switching over to carboplatin/gemcidibine combination. We discussed this and both agreed that cisplatin is the more stronger drug that is given to younger and fit patients that can tolerate it. Carboplatin to more older patients who would not be able to tolerate the cisplatin. The cisplatin has been able to, in the past; give me quality and quantity for 5 years then 2 to 3 years. So a week off (my immune system will keep on getting stronger), day chemo next Wednesday (carboplatin/gemcidibine) that will take about 5 hours and no overnight hospital stays anymore! I then will return in 8 days for a further dose of gemcidibine. I am not really happy with staying on the chemo however for the moment NO CHOICE if I want to stay well, have quality and hopefully quantity of life)! Allan said his aim for me at the moment is to be around in March/April 2014 to accept my award in America! I did ask Allan if I were to cease treatment would he still support/look after me when I needed it. His answer was 'of course'! I think our health system here in Australia is by far excellent for treatment of mesothelioma if you shop around and find an oncologist/general doctor/ who has had experience with mesothelioma and long term survivors of this deadly cancer. When I first went to see Allan 10 years ago, I asked him if he had had experience with mesothelioma and if any long term survivors - his answer was 2 x eight years and 1 x 5 year survivor. (One went on to live for 12 years with good quality of life). Same with my local doctor - I asked him the same and he said 'a few he has treated with mesothelioma and a couple of patients lasted 2 years'. I was happy with his answer as at least if I needed pain medication then he would be able to know what to give me without having to guess! There is no easy answer for mesothelioma and treatment. It is still no cure or closer to finding one. However I do believe that over the years palliative treatment has improved although our bodies seem to be getting immune to the treatments. Globally researchers need to find a cure/ they need to help us longer term survivors stay alive and well too, not just give up on us because 'we are past our used by date'! On another note, my heart goes out to those with mesothelioma that are doing it tough at the moment. Hang in there, get help and you will get thru this! ----------------- Sep 24th Today is Tuesday, getting ready to head off to the Melbourne appointment with my oncologist Allan Zimet for results of yesterday's scan and blood tests. We are hoping for stabilisation of the cancer, shrinkage would be fabulous however at this stage I will take stabilisation! If no change/on the rise since start of August when I commenced this third round of chemo then I will be asking my oncologist to stop the chemo, enough is enough! ------------------- Friday, September 27th, 2013. Life between chemotherapy! Visit to Melbourne and National Mesothelioma Day Yesterday I caught the trains to Melbourne (3 trains altogether) and visited my daughter Jo and beautiful little grandkids including little Oliver who is now 5 weeks old. It was so nice to be able to visit and not have the dreaded side effects of chemo hanging over my head while there and travelling! --------------------- Wednesday, October 2nd, 2013 Shhh! Feeling good so far on chemo! Yesterday a windy journey to the hospital in Melbourne (about an hr away if a good run) we left here about 7.20am and got there just before 8.30am for our appointment at Day Chemo Day chemo changed my PICC line, flush and bloods were taken. Keith took the bloods up to pathology to wait for results and then met me in the waiting room of my oncologist Allan Zimet. Bloods were good apart from white blood cells down slightly. I asked Allan about the results from my mesothelioma marker test (the one that costs us $150 out of pocket) and is the brainwave from Professor Bruce Mitchell in Western Australia. It gives an indication of the mesothelium and true to form mine was up to 12.9 whereas the last test earlier this year was 4.9. Back to day chemo to be hooked up, premeds into the cannula and bingo away we went. I asked for Allan to order the relaxer tablet that works almost instantly under my tongue it did help as I was able to drift off for a couple of minutes and wake up again, much to the annoyance of Keith and Lyall who were sitting there in conversation with me and bingo I was nodding off. It is the only way for me to cope now when sitting there having chemo injected knowing I want to tear it off and get out of there into the fresh air! Ah ... I have been thru too many over the years and it brings back memories. The day chemo nursing staff understand and assist by getting me out of there as quickly as possible to all of them I say a big thank you. you are wonderful in every way! Many staff have been there for years and all know me as I do them then - it is a pleasure and makes it so much better when this is the case. Better for them and better for the patient, long term contact especially when they see long term survivors that do make it even if we come back sometimes! Gemcidibine first then carboplatin plus the hydrating fluids/flushing/pre meds, steroids/anti nausea etc. Gemcidinine 850ml/Carboplatin 300ml. Out of there just on 2.30pm - we were happy and straight home! I slept in the chair on and off watching TV with Charlie on my lap. (Charlie is our siamese cat). On the computer last for a few hrs then 6 hrs sleep; back on the computer. My meds are kicking in .... hoping to have a good day! We will head out later to pick up our mail up at Mt Macedon, go for a walk up the hill if the sun stays out then home to do a few things. Have a good day where ever you are. -------------------- Saturday, October 5th, 2013 Turned the corner! Back in control! Day 4 of chemo! (gemcidibine and carboplatin) and feeling BACK IN CONTROL of my life!!! Feeling totally different on this chemo regime instead of the gemcidibine (gemzar) and cisplatin. Virtually no pain whereas on the cisplatin I felt like I was close to death. I have been able to manage my side effects with medication, my mind and best of all being able to use my lifeline the computer to email/blog/facebook and keep in touch on a global scale. I don't want to keep having chemo however I am being given a lifeline so I am giving it my best shot and WINNING as I am back in control of my life! My heart goes out to the warriors who are doing it tough at the moment sending a beautiful rainbow of love, strength and smiles to you! ---------------- Wednesday, October 9th, 2013 Chemo postponed today due to very low bloods! This morning a race in traffic to Melbourne for 9.45am appointment at day chemo ward (John Fawkner Hospital) for my PICC clean and dressing/blood taken and across to see Allan Zimet my oncologist for results of the blood test and okay for chemotherapy at 10.45am. Keith took my bloods up to pathology and waited a good half hour for the slip of paper with results. We waited over an hour for our appointment to see Allan as he had so many patients to see. We knew by the results of the bloods that chemo would not be happening as all very low. No chemo. I am scheduled for a dose of gemzar and carboplatin on 22 Oct. In the meantime this gives me 2 weeks off to get my immune system stronger to tolerate the next lot of chemo! Keith was a bit upset that the chemo did not go ahead as he explained to me, every one that I do not have is that making my chances of 'survival' less. I said 'no way - my body is tolerating a heavy dose of gemzar/carbo (previously gemzar/cisplatin) in one hit and doing its job then letting my immune system get stronger by not having the next dose the following week' I am happy with this reasoning and believe it is what is best for my body this time round! ---------------------- Monday, October 21, 2013 chemo tomorrow. This week has flown! A visit last Tuesday to the hospital for my Picc line to be dressed and bloods taken. No chemo that week was scheduled and just as well my bloods were still quite low from the week before. Tomorrow picc line to be dressed, bloods taken, appt with my oncologist and the green light for chemo to go ahead gemcidibine and carboplatin. My health - I feel really good and like I am bouncing back to good health once again! Having the forced rest (due to my bloods being low) in between chemotherapy is giving my immune system a fighting chance to regain strength. This coming Saturday will be a big day for me. My brother Chris is marrying his beautiful partner Cheryl. I am so pleased to be well enough to attend. --------------- 0ctober 24th, 2013. Pretty good sleep 2nd night 6 hrs broken in between so I am happy with that sleep. Woke with bile/nausea feeling - meds and brekkie has just about fixed that problem. Will be busy making cakes later today for my brother's wedding coming up on Saturday. Looking forward to making them while I am well enough. -------------------------- November 3rd 2013 Last Tuesday chemotherapy was cancelled due to bloods being down again. 12th November will be my next chemo date for 2 doses (gemcidibine/carboplatin) and most probably a PET/CT scan will be arranged when I see the oncologist on that day for later in the week to see what the state of play is at the moment with the chemo. This chemo regime commenced early August 2013. My hair is getting thin and leaving hair on my pillow, floor and clothing. My energy levels are down however I am OKAY! As for pain - I have no pain and am taking no medication in between chemo! I seem to be in a bubble waiting to pop! The reminder of reality that I am having chemo and fighting for my life is my PICC line in my arm lol. Sat 26th October we attended the wedding of my brother Chris and his beautiful partner Cheryl. The setting for the wedding was at Rye, Victoria a garden themed wedding and one that was just beautiful thanks to their friends for hosting it at their property. Chris and Cheryl have just returned home from their honeymoon in Sydney. Friday night they were lucky enough to be in the right place at the right time. They saw the launch of Asbestos Awareness Month for November, saw the key speaker Don Burke and also watched the beautiful sails of the Opera House turn blue for mesothelioma. Having Asbestos Awareness Month happen is so important for me to see in my lifetime. As it is not recognised as yet on a national state by state scale, I embrace Asbestos Awareness Month; as at the moment all we have in Australia is the last week in November as Asbestos Week. The majority of people by then are in Christmas wind down holiday mode and not really interested in anymore awareness days/weeks of any description. Having a month of asbestos awareness in my opinion, makes much more sense. Bring on next year and a nationally recognised Asbestos Awareness Month! Also with my campaign/petition to have September 26th recognised as a National Mesothelioma Day would be terrific to see in my lifetime. This would then become a global Mesothelioma Day celebrated on 26 September! We have lost more warriors to this deadly mesothelioma cancer since my last blog. All put up a brave fight and have left behind loved ones who now have to pick up the pieces and make sense of their lives without their loved one thanks to deadly asbestos! --------------------- Wednesday, November 6th, 2013 Farewell to a beautiful warrior! It is with a heavy heart that I write this blog. At 4.30pm today a beautiful and brave warrior Steve who lives on the Gold Coast, Queensland lost his life to mesothelioma cancer. He fought so hard and yet the deadly asbestos got him too! My heart goes out to his beautiful wife Gail who is now left to pick up the pieces of their life together without him. This cancer takes the best and Steve was one of the best! Today we went to the hospital in Melbourne for my picc line 'grease and oil change'. Due to the Melbourne Cup holiday yesterday, day chemo ward was very busy and we had to wait 1.5 hours for an available chair to sit in while the picc line was cleaned and dressed. While waiting we went for a walk and had a coffee/green tea at a little cafe then came back and While I was waiting for my picc dressing I was able to make contact with a guy Dante and his wife Joyce. Dante has pleural mesothelioma and had just got his scan results not very good news however his oncologist (mine as well) was changing his chemo regime and continuing with the treatment. It was great to finally meet them and answer their questions. While waiting in my chair with the picc line cover off and the nurse Lana had gone to sterilise her hands, I leaned over to Joyce with my details on a Bernie Banton Foundation business card. DISASTER!!! My picc line came out!!! A phone call to my oncologist and he said 'take it out completely as it is exposed to air'. So out it came and chemo treatment is scheduled for next Tuesday,and depending on whether my veins are okay for chemo or if I need another picc line inserted we will see on the day! Maybe this explains why last week the nurses couldn't get blood from the picc line!! Yesterday while working in the garden, very slowly from me, as a tightening of my chest was happening after the lightest work and I would have to sit down to recover for a few minutes. Keith was burning a pile of dead wood as the fire season approaches next month. All was going to plan and the wood pile was almost out when bingo - it roared flames up into the air so high and jumped to another huge pile of wood that was dangerously near a huge gum tree. Keith raced to get a hose and I raced to get a ladder to cut down branches from the gum tree that may have caught fire. After 2 hours the drama was over and we were both exhausted and grateful that it didn't spread further. ------------------- Monday, November 11th, 2013 My secret for surviving with mesothelioma! Frequently I get asked what is my secret to living 'longer' with mesothelioma and keeping 'healthy'. The day that I was finally diagnosed with mesothelioma and it reared its ugly head, meso put life into perspective for me. I know I will never see my 'old' age however at the moment I am heading towards that being in my 'middle' age and living well! I believe 'living with mesothelioma' is the key to survival whether it is for a few months or a few years. It is like living with a sore foot, acceptance of having asbestos cancer and ultimately 'living with it'. Also 'living in the moment' and dealing with whatever happens in this moment, whether faced with treatment, scanxiety (waiting for results), pottering with every day life, enjoying family and friends, holidays. No use worrying about what the long term future will be. No one knows that, so let the big picture take care of its self (let the universe take care of that for you)! Follow your dreams, plan something nice whether a holiday, overnight stay somewhere, visiting friends/family, a movie, an outing to a cafe, visit to a park. it is looking forward to something. This weekend a young couple in America, Damon and Keshia got married. He is 18 yrs old and living with mesothelioma They are following their dream and wanting to be together. Congrats to this beautiful couple. Then when that happens look forward to another 'plan'. Life is full of plans. I know it is hard to see the big picture of life when living with mesothelioma sometimes. --------------------------- November 12th, 2013. Macedon resident Louise Williams has asbestos related cancer. She has lived with it for 10 years. Source: News Limited Lou Williams credits the quiet and relaxing surrounds of Barringo for defying one of the most aggressive cancers of all. The 58-year-old (pictured) has had mesothelioma, commonly known as asbestos cancer, for 10 years. ------------------------ -------------------------- The cancer, linked to the now banned building product asbestos, attacks the lungs, turning them as hard as concrete and, in doing so, crushing other organs. Ms Williams is in a one per cent segment of mesothelioma sufferers who have warded off the disease for so long. She is in her third major round of treatment, after a relapse earlier this year sent her back into a chemotherapy program. "I've had symptoms for 12 years, but I was first diagnosed 10 years ago when I was given two months to live," Ms Williams said. "In August, my oncologist put me on another round of chemotherapy after the cancer came back to my heart and other lung." ------------------------- Ms Williams moved to the Macedon Ranges from Tasmania after her diagnosis, believing if she had only a short time left, she should live somewhere beautiful. She has been a passionate advocate for sufferers, campaigning for many years alongside Bernie Banton, who challenged James Hardie over their liability. "Our big awareness push is making home renovators aware of the presence of asbestos in their homes and urging them to be wary and remove and dispose of it properly,"  Ms Williams said. "There is a national register for people to record instances of exposure and renovators need to be aware asbestos fibres can be found in old putties and other building materials that date to the 1980s." Asbestos campaigners are now pushing for subsidies for the removal and disposal of the substance to be offered by the federal government. Ms Williams plans to accept an award for her campaigning in Washington in March,2014. November is Asbestos Awareness Month. ------------------------ -MORE TO COME- Back to Neroli's Story On to Poems and Verses. -------------------------