Friday, December 27, 2013

3 more sleeps until New Year's Eve!

Xmas day has been and gone - the lead up seemed to last for ages - I started putting my decorations and Xmas tree up mid November - so that Xmas would last longer!   Every year I sit at night and look at our beautiful tree with lights on, and think to myself will I/we be here this time next year!   Xmas is for the next generation and their generation again.  To see kids/grandkids eyes light up is pure magic on Xmas day!  On Xmas day we have 2 very special grandkids with birthdays!

As our kids were all busy, we had a wonderful Xmas luncheon - thanks to Keith's niece Nat and husband Paul for inviting us to their beautifully renovated home to celebrate with their family/3 little girls, Keith's sister (my beautiful sister in law)/husband and their siblings/partners and little one.  It was an extra special time knowing that I had just survived extensive chemotherapy and Keith his robotic prostate cancer operation and more recent car accident.   After Xmas lunch we visited our lovely 89 yr old friend Joyce who is 89 years old.  Joyce has a saying 'one day at a time'. - How true is this saying!

 On Xmas eve we visited our neighbours for a Xmas drink/exchange of gifts and also to see their beautiful Irish mother/mother in law who is 93 yrs old and staying for the Xmas week. Eli is her name, she said to me 'it is never far to a friend's door' how true is this saying whether it be to their 'actual' real door or the facebook/phone door!

We have 6 wonderful grownup kids between us (myself x 2) (Keith x 4) plus 12 grandkids (and 1 bub due soon) and 2 great grandkids.   It is a very busy time of the year for them  and one we love to share in.  Thank you for our years of happiness with U guys - we have had some fun times and will continue to do so.  Here is a toast to next Xmas!

Boxing Day I felt a bit flat, so started to take down some Xmas decorations although lol have left the Xmas tree and lights up until 6 January (that was my dad's birthday)!  Today as it is too hot outside, we are both doing a declutter/sorting things out and chucking a few things out as well!

We were not on our own for Xmas day - so many people around the world would have been on their own.   I have always over the years included others who I thought would be on their own to join us during the Xmas period, including Xmas in July, in some way whether it be for a drink/food or a catchup.

My heart goes out to those who have done it tough these last few days, even though having family around them, it does not compensate for their soulmates/partners/parents who have passed, and even though they have family/friends with them - they are on their own with their thoughts, grief and unbearable sadness.  

We have lost some beautiful mesothelioma warriors over the last few days/weeks around the world - all thanks to deadly asbestos fibres!   There is no safe asbestos - asbestos kills!

My heart goes out to those meso warriors who are doing it tough -  keep on keeping on - we are all behind you and holding your hand!

Today is a high fire danger/high alert day here 34 to 38 degrees with high winds.   There is expected to be a cool change coming later tonight.

Well only 3 more sleeps before New Year's Eve and then the new year 2014!

So Merry ho ho ho and bring on 2014!

Thursday, December 19, 2013

10 years celebration living with meso since starting treatment - yay!

In 2001 every day I would experience extreme fatigue, swelling of peritoneal area plus a few other things and had numerous tests that showed up nothing much, so I just lived with this diagnosis of unconfirmed 'you know your own body' feelings.   Occassional pain - nothing that a heatpack/light pain meds would not ease, however this was an every day happening.

I could also go back quite a few years prior to this too where I experienced lots of medical symptoms noticeably fatigue/headaches ..... .   However in 2001 I knew as did my doctors that something was not quite right.  Below are extracts taken from Keith's 2003 diary.

In October 2003 Sunday 26th extreme fatigue/exhaustion and the worst pain imaginable peritoneal/groin area that lasted afternoon and overnight then went.

Tuesday 11 November
Ultra sound test for 'lump' on groin area

Tuesday 13 November 
Results from my doctor 'lump still there (from a ultrasound of 18 mths ago), seems okay, nothing to worry about'.  I asked for a referral to a specialist.

Monday 8 December
Fine needle biopsy performed on the lump.

Thursday 11 December
I received a phone call from my specialist at 8pm 'further tests needed, tumour biopsy possibly malignant'.

Friday 12 December
Blood tests

Monday 15 December
Keith and myself saw the specialist
'Bad news, tumour malignant, will operate and remove tumour and try to discover where 'cancer' originating'.

Weds 17 December and 18 December.
Admitted private hospital Essendon, Melbourne
Surgery, gynacologist did a laproscopy, then surgeon removed tumour(s).   Just over 3 hours and back to ward.  Apparently surgeon was looking for ovarian cancer.  He said 'not ovarian, still don't know the origin of the primary cancer.  Will know more after tomorrow's biopsy results.
Next morning my specialist said to me 'walnut size plus tumour and tumours spread around - very hard to excise and serious.   Discharged to home, and come back to see him on Saturday for biopsy results.

Saturday 20 December (THE BAD DAY)
Saw specialist 10am.  He said 'Biopsy says most probably mesothelioma'.   This specialist looked at us while trying to pronouce mesothelioma, said 'I am so sorry it is very aggressive',   I looked at him and pronounced the word mesothelioma for him and said my dad died of this cancer in 1985 aged 54 years.  Both Keith and myself were numb/dumbfounded of all the cancers I did not ever expect to get mesothelioma/asbestos cancer as I DID NOT WORK WITH IT like dad had done in the building industry!
This specialist referred us to my current oncologist ' Allan Zimet' and arranged an urgent appointment for Monday with him.

After going home and just feeling totally numb, in shock and hugging each other on the bed not wanting to take in this news, not answering the phone because not wanting to tell family/friends my bad news, the spell was broken when my girlfriend Sue knocked on the bedroom window loudly and said 'Lou open the door, I have your favourite muffins with me'  It was her way of saying 'I am here to support you in every way'.   While Sue made our cuppa and muffins, Keith returned family/friends phone calls/messages until I was stronger to ring myself later that evening.

Sunday 21 December
(all of this is taken from Keith's 2003 diary) he has written in the diary 'I feel so useless, all that I can do is to make Lou comfortable around the house'.   Lou still in a lot of pain but still insisted on visiting the shops to buy Christmas presents for everyone.

Monday 22 December
CT scan and chest xray at John Fawkner hospital 11.30am then home to rest.
6pm saw oncologist 'It is mesothelioma.   NOT in lungs, ovaries, major organs, BUT in lining of cavity around stomach/abdominal areas.   VERY SERIOUS will start chemotherapy late January.'

Sunday 28 December
Still experiencing fatigue/bad tummy and back pains.

New year's eve
Celebrated with good friends Lyn/John and Maree - a beautiful meal, good company at their lovely home.   We left 11.00pm as I was unwell.   Watched fireworks on TV and celebrated with a glass of champagne, kiss and hug.   Keith has written in his diary 'Please make Louisa have a happy new year'!

We will go out for lunch to celebrate my/our 10 years since treatment day!

Thank you to my medical team, in particular my wonderful oncologist Allan Zimet for believing in me and giving me hope to live with this cancer.  Thank you to our family, friends and everyone else who has played a part in the big scheme of things.   I love you all and without U I would not be here today and being WELL!

My heart goes out to those doing it tough atm - you know who you are!  

I live with this cancer, live in the moment and let the universe take care of the big picture.

I believe I am still here to give hope and support to others, raise awareness, education and advocacy - this is what keeps me alive plus having the wonderful support network!

Merry Christmas to all.

Wednesday, December 18, 2013

Bernie Banton Christmas Lunch

Monday 2nd December 2013 Keith and myself hosted the Bernie Banton Foundation Christmas party at our home.  It was a very warm day although as our home is cool inside it was a perfect temperature to mingle and enjoy the beautiful Christmas surroundings, table setting and of course everyone who attended.   Altogether 16 in total making it a lovely number to sit at one long table rather than 2 or more tables spread out in our kitchen.
Mid morning there was a fire alert on Mt Macedon directly across from our property we could see the flames high in the air, about 7 firetrucks were called out - winds were starting to get up ... however all under control within about half an hour thank goodness.   Keith followed our fire drill/ringing around neighbours in our area and being on alert.  If the winds had of turned in our direction and the fire coming straight towards us then we were all on high alert to get in our cars and GO!   Luckily this did not happen and we all enjoyed our Christmas luncheon with carols playing in the background and a visit from Santa with a jovial word for everyone and a present for the good boys and girls!  Early ADSVIC (Asbestos Diseases Victoria) members were also present making it a wonderful get-together.  Times like this are what keep me going - I am so glad that I was well enough to host this event at our home - I love the preparations and making it special for everyone to enjoy the surroundings and each other's company.  Mind you I was slightly exhausted the next day but so happy I was able to do it!

Tuesday in Melbourne City

Last week!   Tuesday into Melbourne city for me, meeting Linda Thomas for lunch and a wander around the shops.   Last time we did this was a year ago when Linda was still living in UK, now she has moved out here and what a gutsy move on her own.   Will be so nice to catch up with her from time to time.   Wednesday I visited my 3 little beautiful grandkids for a few hours and my daughter.   I had a nurse of the little bub and the older kids and nana played games/puzzles.  The time that I spend with all of them is priceless.   My life has been enriched so much.   I am very proud of my daughter and her partner as they are great parents to my little grandkids.
Friday we went to Woodend, towards the end of our time there I went into the supermarket while Keith went back to the car and moved it into the shade of a tree on a side road.   Luckily he kept his seatbelt on, and started to read a book when all of a sudden he said it sounded like a bomb going off - the next thing he knew was when he woke up and 2 women were at his car window knocking on it saying 'Are you okay?'  Apparently a Ford Territory came tearing down the road, side swiped our car and pushed it 10 metres into the next car causing it to move into the intersection and stop of its own accord.   Luckily Keith did not suffer bad internal injuries, he did get some whiplash and a cut above his eyes - he was very very lucky.   Our car not so lucky - a writeoff!    Keith's daughter very kindly picked us up, took him to her doctor's clinic to be checked out before dropping us at home.
My brother Matt has kindly lent us his utility until we find a replacement car!

Sunday, December 1, 2013

Results of my PET/CT scan

Last week we went to see my oncologist for results of the recent PET/CT scan.   With a smile on his face, my oncologist Allan Zimet said 'Left hand side chest TUMOUR SHRINKAGE, Right hand side NO CHANGE/STABLE, Diaphragm - growing slightly ONLY! 
No further treatment at this stage, come back early Jan 2014!'

Both Keith and myself could not believe this news!  This time with chemotherapy I was fighting for my life and for the moment I have won!   I have my life back again!  For how long who knows - I am happy with this!   I can plan Christmas .... .

Having said that lol we are hosting the Bernie Banton Foundation Christmas luncheon at our place tomorrow.   Xmas tree and decorations are up and everything is ready for 11am tomorrow - I am so excited to be able to do this and feel slightly tired however WELL!

1st December today - I hope this month goes slowly until Xmas day as I love this time of the year.

The annual asbestos commemoration service was held last Friday 29 November, I remember last year returning from Nice, France the night before and attending the service.   As Keith had just been diagnosed with prostate cancer and my cancer had come back .... we both looked at each other there, squeezed our hands and said to each other - will we be here in 12 mths!  Keith said 'if you look after me and vice versa we will be'!   Guess what - Keith has his health and I now have my health back!

Life has its ups and downs and if you can deal with what presents itself at the time, and let the universe take care of the big picture you will get through it.   For us, life is good - we have our health and each other.

Wednesday, November 20, 2013

PET SCAN & quick trip interstate!

A quick 4 day visit to Queensland catching up with my beautiful daughter Debbie and little grandkids Lux and Evie with a visit to Dreamworld where I met up with Gail (who lost her brave warrior husband Steve recently to mesothelioma) and Peter (Gail's brother) for a drink and chat.   It was so nice to spend that time with Gail and Peter and very special memories of Steve in July 2013 when I was in Queensland last visit.

Dreamworld the kids just loved and because it was off season NO REAL TOURISTS there!   It was great to be able to walk around with Deb and the kids, the little ones eyes would light up when they saw each new ride/activity.

Yesterday, Tuesday a visit to the hospital in Melbourne for blood tests, oncologist visit and supposedly chemotherapy.   Bloods were still low, a PET scan ordered for tomorrow (Thursday) and chemotherapy postponed until results of scan next week.    Scan will be at 1.30pm tomorrow with fasting from 7am.   I have mixed feelings about this scan - hopefully STABLE will be the main word my oncologist says when reading the results next Wednesday to me!

Keith had eye surgery today - cataract removal and also his lens lasered and a plastic one inserted into the eye.  He is resting comfortably and has taken pain meds so hopefully will sleep soundly tonight.

We lost another brave Aussie meso warrior, Gordon.   My heart goes out to Dizzy and family.   May Gordon be at peace and free from pain.

Monday, November 11, 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, scaniexty (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 xx

Saturday, November 9, 2013

Congrats Damon and Keshia (living with mesotheloma and getting married)!

Congratulations to a very happy couple in America!  Today Damon Haggan married his sweetheart Keshia.   Damon was diagnosed at 18 years of age with mesothelioma.  He and Keshia are defying odds and getting on with their life and have married today in front of family and friends.

Wednesday, November 6, 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 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 I spoke to a lady who was a 14 year survivor of non hodgkin's lymphoma cancer and as normal chemotherapy had stopped working she was paying for another form of chemotherapy that was not on the 'free list'.   Today was her first treatment at this hospital in day chemo ward so I was able to introduce her to all the nursing staff and make her feel welcome.  The cost of each treatment for her is $3,000 that she has to pay upfront and cannot claim any of it back, however as she said if it buys her more time and quality time then it is worth it.

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.  K raced to get a hose and I raced to get a ladder to cut down branches from the gum tree that may have gotten alight.  After 2 hours the drama was over and we were both exhausted and grateful that it didn't spread further.

My heart is with Gail and Lisa.   May Steve and Tom be resting in peace.

Sunday, November 3, 2013

In between chemo weeks!

Last Tuesday chemotherapy was cancelled due to bloods being down again.  12 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 26 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!

Charlie caught another bunny the other day while we were at the wedding.  Our very kind neighbour found it!  

Monday, October 21, 2013

This week guests staying, 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.  

We have had friends staying for 5 nights from the Gold Coast, Queensland - it was great to be normal for a few days and concentrate on other things instead of chemotherapy/treatments.   I held a dinner party the first night as it was Margit's birthday.   Spinach and ricotta cannelloni followed by a pear/walnut upside down cake.   I was quite exhausted the next day however it was well worth the effort the day before for me.

Twice our friends made lovely meals for us and on Saturday we went out for lunch at the Mt Macedon Hotel - only recently reopened and refurbished.  It was a lovely sunny and warm afternoon sitting in the alcove looking outside at the beautiful 100 year old Oak tree.

A visit to Woodend yesterday and when we returned home got stuck into our garden - we are still burning off for the fire season that is fast approaching.  Unlike the Blue Mountains area in New South Wales where their season has started with extreme fires and heat, we are so far lucky to have had rain and coolness.  The warnings are there for a dry and hot summer .... .

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.

On 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.  The last wedding I attended was last year - my beautiful friends Rod Smith and Karen Banton - what a wonderful wedding that was!  I have lovely memories of the magical day.

My heart goes out to those warriors and carers who are doing it tough at the moment. 

Steve and Gail Cook are on a fabulous cruise to Tasmania - a toast to both of you!

Wednesday, October 9, 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.   Lyall who has peritoneal meso, a long term survivor and good friend was due to come and see me while having chemo.  I rang him and instead chatted over the phone.   Another guy who has pleural meso was due to have chemo later in the day and I had hoped to meet him.  However due to no chemo I left my business card with him and we will make contact thru that.  Another guy with mesothelioma of the eye area had chemo yesterday and in 2 weeks we will make contact when I am scheduled for a dose of gemzar and carboplatin on 22 Oct.

In the meantime this gives me 2 weeks off and 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!

Chemo 22 October to be had, then a wedding to attend on Saturday 26 October.  My brother Chris is marrying his beautiful soulmate Cheryl.  So pleased I will be well and able to attend!  Now for an outfit - no idea what I will wear!  Still it will all come together by the big day!

This evening as it is daylight saving and much lighter here until 7pm ... we went for a walk, stopped into see our wonderful neighbours and fed a kookaburra on their verandah.  While we were there, our siamese cat Charlie came over the paddocks to visit us and stopped for a pat and cuddle with everyone.

He is now quite content on my lap and happy to sit there while I type away on the computer!

Tomorrow we are going to see the Formula 1 movie 'Rush' looking forward to seeing it and hopefully a cinema with no people in it due to the everyone being at work and kids at school!

To all warriors and carers around the world - sending you a beautiful rainbow of love strength and peace.

Saturday, October 5, 2013

Turned the corner! Back in control! Day 4 of chemo!

Day 4 of chemo today (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! 

Life is good!  Tonight on television we witnessed a fantastic fireworks display on Sydney Harbour, Sydney, New South Wales.
(Click on the above link to see some beautiful fireworks pictures!)

Thousands of people turned out on the shore of Sydney Harbour on Saturday night for the International Fleet Review fireworks and light show spectacular.
The review is a celebration marking 100 years since the Royal Australian Navy fleet first entered Sydney Harbour.
The enormous fireworks display kicked off at 7:40pm (AEST) and lasted 30 minutes.
Fireworks, which were launched from military boats and land, exploded over Sydney Harbour while a lightshow projected Navy history and imagery onto the sails of the Sydney Opera House.
Earlier in the day, Prince Harry and Governor-General Quentin Bryce officially reviewed a fleet of international warships from aboard HMAS Leeuwin on the harbour.
They were welcomed by a 100-gun salute as crowds of people packed onto the foreshore looked on.
The prince then met members of the public who had gathered at The Rocks, before heading to Kirribilli House where he was greeted by Prime Minister Tony Abbott and members of his family.

Wednesday, October 2, 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.  The last few days we have had violent winds here and yesterday was no exception.  We have lost a huge tree between us and neighbours, lucky it has not taken out the fence - it is just hanging over it.  A few branches near the house however no real damage.  Today is a stillness day and birds singing, sun starting to come out - will be nice in the garden later on this afternoon.   I have spoken too soon lol!  The wind is picking up!

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 lol 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 ... and 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.

Below is my beautiful friend Julie Stafford latest book that she will be soon launching.  In the meantime for a month the seagull has his own facebook page that you are very welcome to join.   

I want to dedicate the wisdom of Seagull 18 to all those beautiful brave warriors who are today walking the difficult road of mesothelioma (asbestos cancer). To you, your partners and your families, and to all the doctors and nurses around the world walking the road beside you, together we all now why. "Trust is a force, like gravity is a force. It pulls us toward our destiny and pushes us away from the distractions that move us further away from walking the roads we were always meant to walk. Some of those roads will not be easy. Trust says there are reasons beyond our knowing. When it doesn't seem fair, or right, trust calls us to be patient. It asks us to dare. Sometimes, trust asks us to be brave."

Friday, September 27, 2013

Asbestos - Living with Mesothelioma in Australia Louise (Lou) Williams: Life between chemotherapy! Visit to Melbourne an...

Asbestos - Living with Mesothelioma in Australia Louise (Lou) Williams: Life between chemotherapy! Visit to Melbourne an...: Yesterday I caught the trains to Melbourne (3 trains altogether) and visited my daughter Jo and beautiful little grandkids including little ...

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!  We even went to the park in the afternoon while the weather cleared and the wind stopped for a little while.

I caught a Melbourne old tram along Chapel Street to Bridge Road Richmond and walked up the hill to Epworth hospital where I surprised a lovely guy called David who was diagnosed in April 2013 with pleural mesothelioma after returning home from a cruise and deciding to mow his lawn only to find himself short of breath.   One of the tell tale signs that the deadly mesothelioma could be lurking in the background of diagnosis!   Quickly a pleurodesis followed and unfortunately nerve damage was inevitable leaving this brave warrior in unbearable pain over the coming weeks.   A visit to my oncologist Allan Zimet for a second opinion, and within a few days David was admitted to hospital - this was 6 weeks ago.   His pain now under control and with intensive chemotherapy and radiation therapy he was due to be released TODAY after the 6 weeks!   Well done to this brave warrior - he has gone through so much in such a short time, been proactive with treatment and now it is time for his body and immune system to heal and get stronger and by being at home this will happen!  It has been a tough time for his lovely wife Coral and family.

Steve Cook was admitted to hospital early yesterday morning and is now resting at home - a toast to another brave warrior and his beautiful wife Gail who are both doing it tough atm - enjoy your weekend and may the sun shine brightly!

Our beautiful and brave warrior Jan in the UK has been thru so much this week - no one should have to go thru what she has had to put up with and basically without any pain relief.   She will be commencing treatment of chemotherapy once the drainage is under control thanks to Prof Fennell.

Mavis has had her scan and is now waiting until end of October for results with her oncologist.  In that time Mavis you will be able to get your immune system stronger and back to good health!

To all the other brave warriors my heart goes out to you - U are so brave and face life with courage, strength and a global unity of love.

Mesothelioma National Day was held on 26 September in UK and USA.  I have a petition going to get as many signatures on a global scale for Australia to join these countries and have Mesothelioma national day declared here too.   

Please sign this petition and pass around to others too.  By having this day in Australia we can help to create asbestos awareness, education and reach out to everyone that there is no safe asbestos!  Asbestos kills!

Thursday (Sept 26th) is National Mesothelioma Awareness Day. We take time to humbly remember those we lost and to continue the fight against this horrible disease in UK and USA!  Australia does not have a National Mesothelioma Awareness Day - we need to be part of this global day!  This is our chance to create awareness, advocacy and educate innocent people on the dangers of deadly asbestos fibres.  The more knowledge and awareness we have, the less likely your children and their children of the future will die from deadly mesothelioma asbestos cancer.

Monday, September 23, 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 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!'

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 given 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!

On a lighter note, when we arrived home our siamese cat, Charlie had left a present for us - a dead baby rabbit sleeping peacefully!


Friday, September 20, 2013

Weekend before Scan/Chemo next week!

We have had 3 beautiful days in the spa country/Daylesford and Hepburn Springs area staying in a bed and breakfast home.  In its heyday of 1910 era this guesthouse had 38 rooms/60 guests.  Today 4 ensuite rooms and 8 guests.  It is a lovely Edwardian timber home, high ceilings and what was once a beautiful garden.  Unfortunately it has been let go due to the high maintenance and costs however besides all of this we had a lovely time away and was able to focus just on that happy time rather than on treatment and the what will happen in our lives in the near future scenarios!

Steve Cook has just posted his blog and so pleased to hear that his major operation was a success and he will be home later today.  Gail will be pleased to have him home.  They lost one of their beautiful cats Mia this week - may she be at peace in cat heaven.

Other mesothelioma friends around the world who are doing it tough - my thoughts and love are with you giving strength, love and hope to you and your loved ones.

Yesterday I caught the train/tram to Melbourne city (Arts Centre) and met up with my eldest daughter Jo and little grandsons Henry and baby Oliver who is now 4 weeks old.   Just to hold little Oliver and give him his bottle was so very special for me.

Today looks like a nice sunny day happening, we need to go to the shops then gardening will be on my list later today.  My younger brother Matt and family are calling in for a visit this afternoon so looking forward to seeing them.  Tomorrow my brother Chris and partner Cheryl will be coming up to visit.  They are getting married 26 October - so a goal for me to keep well!

My CT contrast scan will be on Monday 23 Sept morning after the PICC line has been dressed and bloods taken.   Oncology visit Tues 24 Sept for results and no doubt chemo, then chemo overnight on Weds 25 Sept.  Not looking forward to this week coming!

Monday, September 16, 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 of 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 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.

Sunday, September 15, 2013

10 days to come good after chemotherapy!

Tuesday 3 September 2013 I had my PICC 'greased and oil changed', bloods taken and saw my oncologist for results of bloods and all okay so back to day chemo ward where I had Gemzar (gemcitabine) chemotherapy for 3 hrs then home overnight and returning the following day for admittance overnight to hospital for cisplatin to be infused with a 24 hour flush as it can damage kidneys being such a strong chemotherapy metallic drug.

Back home on Thursday 5 Sept, where chronic pain/headache/backache etc started to consume every waking hour of my existence and of Keith's as well - he had to administer my medication as I was getting confused with what I was taking as the pain was overwhelming.  My phone/computer skills went out the window due to feeling pains, weak, no appetite, listless, bad sleeping and very pale looking skin with hair loss happening.

Tuesday 10 Sept back to the hospital where picc 'greased and oil changed' and bloods taken.  Saw oncologist who said no chemo today due to low bloods.  CT scans ordered for Mon 23 September to access where I am at - hopefully tumour growth is stable - maybe even shrinkage!  24 and 25 Sept chemo will go ahead - with another decreased dose so that my side effects are not so bad.  My immune system seems to becoming more toxic with each dose of chemo, considering that I have had chemo over 10 years this is to be expected.

Thursday12 Sept I 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/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 ... .

Tues and Weds we are taking off to Daylesford/Hepburn Springs (a beautiful little country spa town about an hr north of here) staying in a bed and breakfast Edwardian home while Charlie (our siamese cat) will be nicely looked after at home thanks to a friend who will be staying with him.

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 24 and 25 Sept.


Monday, September 2, 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!

Wednesday, August 28, 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 2 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 anemic 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 2 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 is 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.

The above link is a story of my dad and myself on Deidre's website in New Zealand.

“Daughters of the Dust: The Changing Face of Mesothelioma” by Gary Cohn is a powerful true story. For more than 100 years, asbestos has been known to cause deadly diseases, and more than 10,000 Americans die every year. As a mesothelioma widow and co-founder of the Asbestos Disease Awareness Organization (ADAO), an independent non-profit, we thank Heather, Lou, Debbie, and Janelle for using their voice to raise asbestos and mesothelioma awareness. While researchers and clinicians work on new treatments - Prevention remains the only cure. It’s time for the USA to ban asbestos to protect public health and our environment. We certainly don't need to import 1,000 tons of asbestos each year!  Posted by Linda Reinstein

Both links are very powerful stories.

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 so. 

Also today I have turned the corner after 2 weeks since my last 2 lots of chemo 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 Weds overnight in hospital for the cisplatin.

10 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 5!  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 with living with mesothelioma I have made it this far and am hoping for a long time yet!

Wednesday, August 14, 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 thier little heads everywhere and just enjoying being with nature.  Yesterday afternoon when the sun came out for a little while I did pottered ... feeling quite weak 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. 

Tuesday, August 13, 2013

Chemo delayed due to platelets 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 'very heavy dose of cisplatin/gemzar last week - yr system is toxic will see how it goes, gemzar today'  I asked him what my chances of survival with treatment ... 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 the sheet of paper in with 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.

Sunday, August 11, 2013

Mesothelioma chemotherapy 10 years same treatment - a nightmare for me!

Today is day 5 since leaving the hospital after heavy doseages 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 doseages 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, my skin is 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!  2 weeks ago while in Queensland everyone said how well I looked.  If you saw me today - it would be another story.  

Early this morning 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 soulmate who has been on this mesothelioma journey with me all the way - every step of the way as a team.  His beautiful soulmate 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 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/forgetme 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 unconditional and may you be having a beautiful day.

Thursday, August 8, 2013

Asbestos - Living with Mesothelioma in Australia Louise (Lou) Williams: Hi World! Lou is back home!

Asbestos - Living with Mesothelioma in Australia Louise (Lou) Williams: Hi World! Lou is back home!: Hi everyone - I am HOME again after 3 days/2 nights stay in hospital at John Fawkner hospital, Melbourne. I am so overwhelmed with all the...

Hi World! Lou is back home!

Hi everyone - I am HOME again after 3 days/2 nights stay in hospital at John Fawkner hospital, Melbourne.

I am so overwhelmed with all the beautiful caring messages, phone calls, cards etc that I am receiving - I love you all and thank you for being there - your healing strengths give me hope, love and lift up my spirit to keep on fighting this dreaded asbestos cancer - mesothelioma.

Tuesday 6 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 to prior to the cisplatin and while it was going into my veins - lock jaw of my mouth/nexk 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, 2 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, felt slighty nausea coming on, however 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 sit and rest 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 U 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 .... .

10 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.

Monday, August 5, 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 5 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


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'!!!

10 yrs 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 thru 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!

Sunday, August 4, 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.

Wednesday, July 31, 2013

Pet scan Weds 31 Aug 2013 - my meditation time!

This morning was my PET scan at the Austin hospital, Melbourne.  Fasting for 6 hours and allowed to drink water only.

The Nuclear medicine department is situated in a very dark hole of the hospital - a rabbit warren to find lifts, follow the blue line on the floor to a visitor lift then down a floor and entering via a door where no windows are situated, hence a closed in feeling can overtake the patient as it did the first ever PET scan held there.

My previous PET scans have been in the duration of 2 hrs to 3 hours, this one took 1.5 hours due to the new machines and rather than undressing and putting a gown on - it is now possible to leave clothes on apart from anything with zips or metal.  The radio active dye inserted lying down then on my own lying totally still for 1 hour - pure meditation time for me!  Then I was ushered into the twin domes where I had my head put in a hold and was told to lie absolutely still for 30 minutes while going in and out of these domes.

Easy peasy and out of there by midday!

Results on Monday afternoon with my oncologist Alan Zimet at Epworth hospital!

Prof van Zandwijk/ADRI meso trial TargomiRs treatment first stage late 2013

Prof van Zandwijk says he does not want to raise false hope, but he is cautiously optimistic the treatment will work.
"I think the whole concept is sound and we feel very reassured.
"While our preclinical research was confined to mesothelioma, we hope that this new approach to cancer treatment will also inhibit other tumour types."
Speaking at the launch, Federal Health Minister Tanya Plibersek said: "This will allow further research into the most promising treatment for mesothelioma yet discovered. It means that we might have a cure in a few years."
Mentioning the sadness of losing a family friend to the disease, she said: "Anyone who has been touched by mesothelioma, and there are so many Australians who have been, will be so excited about this. It's just such a wonderful day."
The trial is made possible by a $1.2 million donation from the family of Andrew Lloyd, who died of malignant mesothelioma in 2011 after coming into contact with asbestos during building renovations. 

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

Australian scientists have made a breakthrough that brings a glimmer of hope to people with a deadly cancer caused by asbestos.
The cancer affects a small percentage of people exposed to asbestos, but it is relatively common in Australia with about 650 new cases a year.
There is no cure for the disease, which takes about 35 years to develop, and most people die within 18 months of diagnosis.
So far, treatment developed at the Asbestos Diseases Research Institute has shown remarkable results in tests on mice with malignant mesothelioma taken from humans.
Now, institute director Professor Nico van Zandwijk and his team are preparing to test the TargomiRs treatment on humans.
First stage trials start at the end of 2013 and will determine the optimal and safe dose.
"Treatment options for this asbestos-related cancer are very limited and effective new therapies are urgently needed," Prof van Zandwijk said at the announcement of the trial in Sydney on Wednesday.

Sunday, July 28, 2013

Asbestos Cancer Melbourne Gala Dinner 2013 Biaggio Signorelli Foundation 1st Annual Melbourne Gala Dinner to raise funds to create awareness, earlier detection and improved treatment, and ultimately find a cure for Mesothelioma (Asbestos Cancer).

Last night in Melbourne I was very honoured to be able to attend this beautiful gala event with my husband Keith and Rod Smith/Karen Banton all representing Bernie Banton Foundation.

A black tie event, it was a good excuse to dress up, kick our heels up and enjoy a spectacular night with other like minded people who were there for a good cause - raising much needed funds for mesothelioma research.
Associate Professor Paul Mitchell, Olivia Newton John Cancer Centre spoke on the aggressive and deadly nature of mesothelioma and how much needed funds are very vital.  I spoke to him after his speech and about me being past my use by date as there is no treatment available for me as it is now about those who have just been diagnosed and helping those patients with treatments.   That is where the focus is on now.  The longer that I live the more likehood of running out of options for treatments due to the nature of the tumour activity.  I  did think that long term survivors such as myself living with this deadly and aggressive cancer should be acknowledged for exactly what we are - brave mesothelioma warriors making the best of a bad situation by living with this cancer and dealing with what life throws at us.

After all, being diagnosed with this cancer should not be a death sentence, let us live with it well and carry on helping others who have it, their carers and those who are yet to be diagnosed.  We are in it together as a united force.  I will keep on fighting for myself and everyone else until there is a global ban on asbestos, and when asbestos assessment, removal and disposal is heavily subsidised in Australia for all to have access to.  We need to remove all asbestos from every place in Australia because until we do that, we will continue to have innocent lives being exposed to deadly asbestos fibres.  Asbestos kills, there is no safe asbestos!

I live my life in the moment, enjoy my life and fight for what is right!

Asbestos Cancer Melbourne Gala Dinner 2013

Biaggio Signorelli Foundation 1st Annual Melbourne Gala Dinner to raise funds to create awareness, earlier detection and improved treatment, and ultimately find a cure for Mesothelioma (Asbestos Cancer).

Special Guest Performance – Tina Arena
Tina Arena’s career started at the age of seven on the hit TV show – Young Talent Time. After being a household name throughout her teen years, her 2004 album ‘Don’t Ask’ won six ARIA Awards and can now be found in 1 in 4 Australian homes.
Tina has sold 8 million albums and has performed with Donna Summer, Celine Dion, Julio Iglesias, Stevie Wonder and Marc Anthony around the globe.
Tina’s career has recently come full circle as she returned to where she started in Channel Ten’s ‘Young Talent Time’, this time as an admired judge.
A wonderful career, rich in it’s diversity, one month Tina can headline the Sydney Gay & Lesbian Mardi Gras with one of her dance anthems before touring with Andrea Bocelli the next. Always humble with a wonderful working-class sensibility and a great sense of humour and humility Tina is an artist with true integrity and unwavering talent.