As we go into 2015 I want to say a big thank you to all the readers of my blog. I hope I have bought help to those that have been diagnosed with my story as I live day to day through the disease.
I have also had wonderful help from you all, so now and again I will do a guest blog from these people that work tirelessly to bring support to others through out the world.
Some medically and some in the jobs that they do to help.
My first one is Bernie Banton in Australia.
We met rod as he nursed Julie through the awful journey she followed.
I guess a first blog should start from the beginning – well – not the very beginning – but at least I should give a bit of background to why I am actually blogging in the first place. With some encouragement from Mavis and Ray Nye from the UK (her book Meso Warrior) and some technical help from my son, Scott – what would I do without him – here it is.
In early July 2008 I went to the Drs with a list of very vague symptoms. They were so vague that I hesitated to even list them – but I did and my GP seemed concerned enough to send me for an ultra sound. A few days and a CT scan later I found myself looking at some very alarming words on the radiologists report. I always peel open the film folder and sneak a look at the report – of course very neatly re-sticking it all back up. After some googling I was really no better off – just more worried. I initially didn’t tell Rod (my partner) anything. My thoughts – no need for us both to be worried. Now, however, it was time to ‘fess up’ what was happening. Now we were both worried. After more scans we had a referral to Monash Oncology Unit. The word “Oncology” sent shivers up my spine. Surely this was some kind of a mistake. My tumours – one laying over the top of my liver and the other low in my pelvic area, however, were clearly not supposed to be there. I also had an “abnormality” in the pleura. I had a fine needle biopsy followed closely by a PET scan. The biopsy showed I had mesothelioma – a cancer which came from being exposed to asbestos. I have never worked with asbestos so the exposure had to be accidental. My father was a refrigeration engineer and worked in and around boiler rooms where pipes and machinery were lagged with asbestos used as an insulating agent. This had to be my contact. As a teenager I used to go down to “The Freezers” as we called it, with Dad and follow him around as he checked temperatures etc. – no doubt brushing against the lagging as I passed through the machinery. Dad’s clothes would also have been covered in it, so that is another point of contact. Little did I know way back then the deadly end game that was set in motion. It was to stay dormant in my body for some 45 – 50 years.
In very quick succession I had a pleuradesis (the talc operation) in August 2008, and then a debulking of the pelvic tumour with a small bowel resection (Sept 2008) as the tumour had almost blocked off a part of my small bowel. With almost indecent haste (October 2008) I started chemotherapy with Cisplatic and Alimta . This however was very necessary, and after only 3 doses the abdominal wall tumour had reduced dramatically and the progress of the cancer in the pleura was halted. A period of 6 months of stability followed, however in June 2009 I was back to chemo – this time Carboplatin and Alimta – as the abdominal wall tumour had started to increase in size. The pleural meso was still stable and to this day appears to be have remained stable. After 4 doses of Carboplatin and Alimta followed by 6 of Alimta alone the abdominal wall tumour refused to be subdued and it was decided it had to be removed surgically. In April 2010 out it came.
Because this operation required a fairly large mesh repair, I couldn’t have chemo for a number of months – but it was a calculated risk that we were happy to take. Chemo had pretty much reduced all other tumours scattered in the abdomen and we were hoping this would remain the status quo. This was not to be. After a PET scan in September, 4 new “hot spots” were identified and I recommenced chemotherapy. Three doses and a scan later there was still some slow growth so the chemo was not working.
This brings me up to date – phew !! I am currently waiting to see if I get onto a clinical trial at the Austin Hospital of the drug BNC105. My interview to see if I fit the criteria for the trial is on the 8th February. This is one test I do NOT want to fail so I am keeping myself positive. It has brought out the pioneering spirit in me and I so want to have the chance to try out this new drug. I believe there were 60 meso patients involved in a trial of this drug in 2009, but I have no information on the results, but I feel sure it must have been promising as Dr. Ganju (my Oncologist) would not have referred me otherwise. I am, however, pragmatic enough to realise that if it doesn’t work out, then there will be something else for me out there.
So there is my “bit of background” – it has taken 841 words!! This neat blog page counts the words for me !!
I will keep you posted….. Cheers for now… Julie.
Her journey went through to her sad death.
Rod throew all he had into the Bernie Banton Foundation and carried on the good work.
In his own words ————————————————————-
On behalf of everyone connected with the Bernie Banton Foundation, I would like to wish all a merry Christmas and a really successful 2015.
2014 has been a momentous year, in almost every way!
On the support side, it saw the formation of our new support arm, the MARS (Mesothelioma and Asbestos Related Support) Network; it has also seen the passing of many warriors. Not one of them departed without a fight; they were simply over-powered by the ravages of asbestos related disease. On a personal side it has been a truly devastating year, so much loss, not only worldwide, but also from our own ranks.
On the asbestos awareness side, it saw the launch of the foundation’s Mobile Asbestos Education and Awareness Unit incorporating Stan’s Van. The concept is simple, we are taking the foundation and awareness of the dangers of asbestos to the people, rather than expecting them to find, or come to us, encouragingly, our phone traffic is telling us we are on the right track.
The foundation is also actively working in with a number of other Australian anti-asbestos support organisations to further our common objectives. Excitingly, worldwide we are forging ahead with consolidating existing alliances, and creating new ones, with international like-minded organisations. With this in mind, we have formed a new division, ‘Asbestos Awareness and Advocacy Australia’, which incorporates ‘Asbestos Awareness Australia’ and ‘Asbestos Advocacy Australia’.
From an asbestos point of view, 2014 in Australia will be defined by the Mr Fluffy loose-fill insulation crisis in the ACT and NSW, along with resultant ground breaking legislation brought in by the ACT Government and Worksafe ACT, to deal with the crisis. The NSW government came in late, but would now seem to be pro-active on the issue. The other ‘asbestos’ notable in 2014 was ASEA’s First International Conference on Asbestos Awareness and Management, held in Melbourne on the 16-17 and 18th of November, proudly (as an Australian) this was an outstanding success.
In November we received notification of support from the Asbestos Safety and Eradication Agency (an Australian Commonwealth Government agency), by the way of a grant that will allow the foundation to exhibit at the HIA Melbourne Home Show, the Shepparton Home Show (both in April) and the Adelaide Master Builders Show in July. Like all other similar organisations, the foundation is actively courting sponsorship, or support to fund the day to day operations of the organisation.
Importantly, 2014 also saw the advent of the foundation’s first international sponsor. We are fortunate to have Verastem, one of the worlds foremost leaders in mesothelioma treatment research, who is running the ‘Command’ mesothelioma trials worldwide, come on board as a supporting partner. This sponsorship came about due to our close collaboration with the USA based mesothelioma support organisation, Mesothelioma Applied Research Foundation and the UK based Mesowarriors, which is led by the wonderful mesothelioma sufferer, Mavis Nye. We are blessed to have such close connections with these two organisations, which I believe are without peer in their respective sectors, and countries.
We also saw a new director, Mary Wills, grace the foundation’s dynamic board of directors. Mary has been touched personally by the horror that is asbestos, having seen her Dad succumb to asbestosis. Mary (and her family) is, and will continue to be a tremendous asset to our ranks.
In closing, I thank all who supported the foundation throughout 2014, and sincerely hope 2015 brings you success. To those living the journey brought on by asbestos related disease, I know from personal experience, there is nothing for me to say, except to ask you to maintain as much love, faith and hope as you can. For those who are living through the loss of a loved one, please know you are not alone, even though for much of the time, it must feel you are.
With love, faith and hope.
Operations Manager and Support Coordinator
Bernie Banton Foundation
Wishing all our Australian friends a very Happy New Year and to those that have lost I hope you can travel through 2015 remembering the Happy Moments and the joy you had with your loved ones xx