On 17th June we had a great night out to celebrate my 67th birthday. Everyone was there – no mean feat as Adam, Lou and Scott work on Friday nights so there was a bit of swapping shifts etc. In the photo is Adam (youngest son) and Amy (Scott’s partner/daughter in law). I received some lovely gifts but the best gift of all was having my beautiful family around me. I am truly blessed.
Another great day – last Wednesday – when I had a visit from my grand children and my great grand daughter – Amira. It has been a while since I last saw Amira and she is now 5 months old and a beautiful happy baby.
Together with this joy comes sadness as meso has claim yet more lives. Three members of our support group have died in the last fortnight – brave and courageous people have needlessly died because people in a boardroom somewhere have put money ahead of lives – destroying families and causing untold pain. I try not to get caught up in the anger as it is energy I could use for better things. I will leave that to the people who are left behind to fight for an asbestos free future.
Over the last 3 – 4 weeks my tumours have grown alarmingly and have caused a few problems – not the least being the difficulty in eating solid foods – the rule is – little and often – the least problematic being liquids or semi liquids. I am very weak – some days more so than others and rarely go out which surprisingly doesn’t bother me. The weather hasn’t been very encouraging these past few weeks.
I was to have the small same day procedure to have the stent replaced a couple of weeks ago but after consultation between my GP and Oncologist it was decided to cancel the surgery. Obviously it was not necessary – which means my kidneys are still working well. All good !! I am still a power house of heat – always feeling hot – great for me but not for Rod who tends to feel the cold so it is a matter of playing tag with the heater controls !
Mentally – I think I have come to a very good place. I have times of feeling completely at peace and acceptance. Seemingly simple things give me great joy. I have always believed that bad things are never all bad Some good comes out of the the worst situations. Of course there are the times when dark thoughts creep up on me – but these are becoming less often now. I think we have those thoughts whether we are sick or not.
Cheers for now – keep warm –
I’m sitting down to write this blog with my new favourite drink – juice of apple, carrot, celery, pear, ginger and beetroot. It is quite an alarming bright red colour but delicious. I finally got around to making an appointment with the Naturopath and I think I’m feeling a lot better already and my energy levels have definitely improved. Probably all in my mind as it has been less than a week, but I think a lot of the healing starts there, anyway. I have to fill out a “Food, Energy, Mood & Sleep Chart” as well. My next appointment is on Tuesday and I am quite excited to see what she has to offer me in terms of supplements.
I have been juicing for over 10 years and have actually worn one juicer out and am on my 2nd new beaut version. The only difference now is that I’m trying to source out organic fruits and vegs and have added some really different combinations to my diet. One thing I have learned is that most of the goodness goes out of the juice after 20 minutes. That isn’t a problem for me as it’s well gone by then.
We went to see Dr. Ganju a couple of weeks ago for what turned out to be probably our last appointment. He has been with me my whole journey with meso and it was hard to say goodbye. He assured me that I could ring him at any time and make an appointment to see him if I needed to speak to him about anything – which I thought was really great. It left the door open just a little bit. I asked him if there was anything at all he could offer me at this stage which would help The answer was the expected “no”. I feel, however, that if some ground breaking drug was discovered, I could ring and discuss it with him. Although he is still part of my “care team”, my main point of contact now is my RDNS visiting nurse, Michelle, who has been seeing me on a weekly basis for the last 6 months and my GP where I will now go for scrips etc. Kind of like “the changing of the guards”.
Recently, two of our support group members have lost their fight with this wretched disease. It is so very hard to lose anyone in the group as we are like a family. We share our hopes and our struggles and support each other throughout the journey.
The photo is of our little Kalle. He is my “minder” – never very far from me – a great comfort when I’m feeling a bit low and the very first to let us know if we have a visitor. That of course could be simply next door’s cat.
Well – I’m off outside into the sun, None of this sitting in front of a computer !!!
Cheers for now –
I can’t believe it has been so long since I blogged. So much has happened. My dear “not so little” great grand daughter Amira is 2 months old. She is doing all the right things and Shay is an amazing young Mum. Life goes on with the family – my three sons and their wonderful partners drop in often to see me and I was very spoilt on Mother’s Day.
My health: The stent and the attack of shingles behind me, I had my first – much delayed – dose of Cisplatin and Gemcitabine. Although the side effects of the chemo were relatively mild, my general health deteriorated over the fortnight, no doubt due to the increased tumour activity. My oncologist, reluctant to agree to the first dose, was even more reluctant to go ahead with the second. He explained that the side effects of the drug could do more harm than good. In any case I couldn’t have the second treatment for a few days until my body recovered some more. It gave us both a few days grace and lot to think about considering there was a less than 10% success rate – even if it worked. After a lot of soul searching and discussion I decided to discontinue chemotherapy. It seemed to me the odds just weren’t worth it. Rod and I both talked about it – but in the end it was my decision. I have to add here that it was very hard thing for both of us to come to terms with stopping chemo. Right from the first diagnosis we put our faith in medical options of surgery and chemotherapy and I have always fought this thing strong and hard – with an unshakable conviction in that I was doing the right thing – and it was. I believe I am here right now – 3 years from diagnosis (5 years from first symptoms) solely due to following the medical route. To now try to look at it in a new light and perhaps gracefully concede that the fight needs to be waged on a different level is challenging.
Many people turn their back on traditional medical therapy altogether and go the way of herbalists, naturapaths, etc. Some find their way back to traditional therapy with some success – others not. I know of someone who has used chinese herbs with remarkable results after having exhausted his options with chemotherapy. It seems that there are hundreds of stories out there. Some people do nothing and are still going strong 10 years down the track. They attribute their success to various things – faith in god, a stress free life, meditation, special diets – the list goes on.
I have been given the name of a Naturapath and it will be interesting to have a talk to her to see what she can offer. I am feeing quite well at the moment and am reluctant to “rock the boat” with any radical alternative therapies. I think I have reached a “peaceful” place at last.
Cheers for now –
So many good things have happened lately. Firstly, and most importantly, of course the birth of my precious great grand daughter, Amira Sienna Bastian-Lopez. She is going to be an Amazon Woman with a birth weight of 9 lb 2 oz and 22″ long (in the old money). What a wonderful strong woman she will be. Grandson, Dylan, has to be the proudest Dad ever and is already doing everything for her. I’m not sure that Shay has even changed a nappy yet. A new age Dad for sure. It is wonderful that she will have both parents sharing the responsibility of raising her. In my day it was Mum who did pretty much everything and Dad got to have a few minutes play when he got home from work and both missed out on so much of the early months.
Last Sunday we went to the Zoo and watched The Australian Queen Tribute Show belt out another memorable night to a crowd of about 1500 people. We had ringside seats – thanks to Scotty – and despite the efforts of the zoo officials – everybody got up to dance. A truly great night. The boys even threw in a couple of Elvis Presley numbers – Jail House Rock & Tutti Fruiti which really rocked the crowd. Even the lions approved giving it the roar of approval.
On the Meso front – the ongoing battle of our courageous meso warriors continues. I’m hearing from people in the UK and America as well as here in Australia who are fighting the “good fight” – a lot of them without the wonderful friendship of a local support group such as I have in ADSVIC . It would have to be the hardest thing to do. I have so much admiration for them.
I am slogging it out on the front line of battle at the moment. My most recent scans have showed yet again an increase in tumour growth and I require a small surgical procedure to regain some kidney function before I can start chemotherapy again. That is scheduled for next Monday and a small stent will be inserted to open a blockage caused by an encroaching pelvic tumour. It is a same day procedure and hopefully I will be able to recommence chemotherapy and beat the hell out of this monstrous thing which is trying to destroy my life. I can’t help but feel the effects it is having on my body – the night sweats and even day sweats are all evidence that my body is waging a huge battle and the scans support this with evidence of tumours throughout my abdomen, pelvis, some in my pleura and one even has found a way into my liver. Not supposed to be there – but it is. I have a copy of my radiologist’s report – not always a good thing to read as I have no idea how to interpret some of the information – which leads to “guessing” – again – not smart. Will try to get some clarification soon.
I have just finished filling out my hospital admission form. I swear it took longer to fill out than the time I will be in there – no – I’m exaggerating again – but seriously – they want to know all the ins and outs of a ducks bum – really! Then there is the anaesthetists forms. Here they list some of the complications of anaesthesia – that’s so you can make an informed choice and if you end up worse for wear they come back with – ‘we warned you buddy – and you signed the form’. So it’s OK??? Another case where it’s probably not a really good idea to read too much of the literature given to you.
On another topic altogether – I attended my 4th meditation class last Tuesday and have found there are another 4 classes after that. This time they got into a whole different ball game – one which I am having a lot of difficulty wrapping my mind around and that is – the end of society as we know it. In other words – the end of the world – doomsday stuff. Now I really think it will take more than another 4 classes to convince me to take this part seriously. I like the rest of it however, and I am sure that it is helping me get into a calmer space. Example: Another mix up of appointments – just an ordinary garden variety stuff up. I remained calm throughout – didn’t even raise a sweat. I think in the past I would have felt frustrated or even annoyed – but no – not a bit this time. There was no effort involved – just no negative emotion. Mmmmm nice. I think it is like a lot of new concepts – you take what you need from it. I will try to continue to attend the classes but chemo may get in the way a bit.
I’m off to have some dinner – I have just noticed there are only 3 dim sims left in the 1.5 kg pack. All eaten by me ! Not at one sitting, though.
This week has been just that – a mixed bag. I have had some 180 degree turns and I’m a bit dizzy !!! Some good and some not so good.
Youngest son, Adam has finally had the long awaited operation on his vocal chords (has been dragging on for 18 months) and he is feeling fine and back at work. Pathology results won’t be available for a week though. Fingers crossed for that. Eldest son, Craig is going through the heartache of property settlement and the court final hearing yesterday turned out to be not so final with a second final hearing set on 29th March !!! It does seem, however, to be heading in the right direction and after this hearing hopefully it will allow all the family to pick up and get on with their lives.
I had my appointment with Dr. Hui Gan at the Austin Hospital last Tuesday and as promised he got back to me yesterday. The news was – out of 3 trials that were running two of them were not suitable for me. BNC105 was one of those two. The reason being that I have had too much chemotherapy. The criteria was – one line of chemo treatment. The third trial is a Phase 1 trial (FAK) which one of our support group members has had some success with. Dr. Ganju is not keen on Phase 1 trials which aims to set the dose of a new trial drug. In effect the dose of the drug is increased to a point where side effects kick in. The drug is then scaled back to a level which is tolerable to the patient. Being Phase 1 also means there have been no previous trial results. You are the guinea pig. I don’t think Dr. Ganju will go for it as I have already asked him twice before with the same reply – No. Even if he did agree – I would have to have a small day procedure beforehand to correct a kidney problem. I think I will probably have to have this procedure in any case.
My recent CT scan results are less than spectacular. All five areas of disease are growing robustly. This includes the previously dormant pleural area. Very disappointing. Some of these tumours are starting to impact on my health so I’m quite keen to start on some sort of treatment asap to try to halt this relentless enemy. My wonderful family and friends as well as the many support group and facebook friends continue to give me amazing support for which I am eternally grateful.
We have lost two ADSVIC members to meso in the past week. This is like a repeat of February last year when we lost two of our members within just a few days of each other. This is so not OK. We are a tight knit support group and losing people is like losing a family member leaving us raw and grieving.
On a lighter note – my meditation seems to be going a bit better. The last lesson was a bit easier and I came away feeling that it wasn’t all a hopeless waste of time. We were in a smaller room this time and had a couple more people join in. This meant that the leader had to go over the previous lesson which was really helpful as I really didn’t absorb much from the previous week. I think this showed as several times she looked directly at me this week and said “Now do you all understand what I am saying?” I said nothing and tried to look confident hoping that would suffice. How could I be less than truthful in that beautiful spiritual setting !!! Some of the concepts are way out there and a bit difficult to grasp – the third eye – the white light – reincarnation….. and some of it really rather beautiful – a bit like Patrick Swayze as Sam in “Ghost” leaving Molly (Demi Moore) at the end and going into the light. A rather nice thought.
Well – that’s it for me this time.
Yesterday I took my first meditation class at the Brahma Kumaris Ashram – a Centre for Spiritual Learning. It is a beautiful spot set amidst 20 acres of native bushland – perfect for it’s purpose. I wish I could say that it was a successful experience. It wasn’t, not that I was surprised. I have tried to meditate before, many times. I wriggled, scratched, coughed and changed position countless times until I thought the leader would have asked me to leave the room. Much to her credit she didn’t. She serenely continued on. The other participants all seemed to “get it”. It didn’t help that it was one of our very hot days and the temperature reached 40 degrees and it was every bit of that (or more) in the room.
In the past, after an equally pathetic attempt, I always quit, however this time I am determined to go for the rest of the course, which is another 3 weeks. It is very encouraging that they consider it only takes 4 weeks to teach someone to meditate. Hopefully it won’t be so hot and the beautiful tranquil setting will work it’s magic. The other incentive is that it is a New Year’s resolution and worse still, I have told many people that I am doing it. Always a very bad move.
I did read Elizabeth Gilbert’s “Eat Pray Love” (where the resolution came from) and I have to say that she, the author, did find it difficult, even after months in an Ashram in India learning the art of meditation from the Buddhist Monks – surely the perfect place. I also saw the film, and the vision of Julia Roberts sitting cross legged (can’t do that) in a beautiful white outfit, made a big impact on me, so I will continue.
My next class is next Tuesday the 8th, the morning of the day I have my appointment at the Austin Hospital when hopefully I will find out if I am eligible to joint the clinical trial of BNC105. Feeling a bit nervous, but hopefully I will be very calm and “zen” after a morning’s meditation.
Sometimes an ordinary day turns out to be extraordinary and you know that it will remain with you always. That is what has happened today.
Son Scott plays in the Australian Queen Tribute Show and they were playing tonight at the Rye Foreshore Australia Day Festival. There were lots of families there as it was an alcohol free area and everybody got up to dance – from 3 yr olds to 60 yr. olds. No – not me – but Rod joined the crowds in front of the stage.
All the Queen greats were belted out by Gareth (aka Freddie Mercury) and the band – Bohemian Rhapsody, Crazy Little Thing Called Love, Somebody to Love, Fat Bottom Girl, We will Rock You, Another One Bites The Dust, I Want to Break Free, Radio Ga Ga, Under Pressure, and lots more. Of course Scott (aka Brian May) on the guitar was, as usual, amazing. No – I don’t think I am biased…….
The evening culminated with “We are the Champions” playing with the backdrop of spectacular fireworks lighting up the sky. A truly memorable night.
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.
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