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.