Friday, January 23, 2015

Lou's mesothelioma treatment update

 A picture of my garden - agapanthus in flower, while sitting with Charlie on our outdoor veranda sofa.
Mum, nurse Evie asked me this morning when we are going to Melbourne to make nan-nan get better! (My little grand-daughter Evie asked my daughter Deb this question recently)!

Where do I start?  I guess with my recent scans and blood tests!

Xmas eve my bloods became very depleted again and needed an urgent blood transfusion (2 units of blood) haemoglobin 92.   I left hospital and after a few days came good again - running no doubt on ironman/ironwoman's bloods!

Scan just after that showed progression of tumours ..... .

Last Thursday my bloods were down again this time to a dangerously low 76 haemoglobin.  So an emergency rush to hospital where my oncologist Allan Zimet met me in the oncology ward at John Fawkner hospital (all the wonderful nursing staff have been there for my journey including the day chemotherapy nurses) so in a sense it is like a second home to me.  If I have to be in hospital I would rather be there than anywhere else ... although lol I have built up an adversion to hospital stays since being diagnosed in 2003 with peritoneal mesothelioma and again in 2009 with pleural mesothelioma and various lengthy treatments since then in hospitals.

Allan said he was very worried about me and over that night/next morning I had 4 units of blood and Fri afternoon CT scans with contrast dye.

Allan did his rounds that evening with the head nurse Alison (who has become a dear friend over the years) and the looks on their faces said it all.  Firstly I said to Allan "I just want to go home"... Allan replied "yes".  The scan showed that the 20cm tumour in the lining had pierced significantly into the stomach/abdomon and is now dangerously close to 100s of blood vessels.  Allan said to Keith when at home to monitor my situation (any pain/fresh blood in urine or mouth) means tumour has ruptured blood vessels and it is a trip by ambulance to the hospital as I probably will bleed to death if this happens.  FLYING IS OUT/GOING ANY FURTHER NORTH BY CAR OF OUT HOME IS OUT .... for the moment anyway!

We came home with the thoughts that all of a sudden my years of living with mesothelioma have caught up with me and it is now out of my control as to what happens.  So preparation of banking/wills in order, my funeral ........ we discussed, I had to ring my daughters and tell them the sad news and just accept that this is my time to come to terms with Keith and family/friends to die. The good side of it is that I get to say goodbyes!

Lol I put my thoughts together Friday night - both Keith, Charlie (siamese cat) and myself when home from hospital just sat outside until dark and coming to terms of end of life could be just around the corner.  I am on the look out for fresh blood lol .... .

Saturday a girlfriend of many years Vicki and husband David drove down from Canberra to see us for the day.  Chris (my brother and Cheryl my beautiful sister in law) came up from Melbourne and Karin (Keith's daughter and my beautiful step daughter) brought her famous sausage rolls around with lovely yellow roses for me  A nice lunch had by all and even though by late evening I needed a rest it was a wonderful day.

The next day we went to Melbourne and called into see my daughter Jo, David and beautiful little grandkids - it was just so nice - thank you Jo.  Words cannot describe how much it meant to me.

Next a visit to Church St Brighton (near the water) where we caught up with old friends at the beautiful French cafe Laurent.  We have been going to catch up for over a year with their health not the best and mine too .

Popped into surprise Ria and husband for a few minutes and to have our very special hugs (Ria lost her beautiful dad to mesothelioma).
What a lovely surprise!!!Thank you Lou Williams and Keith for coming to see me. You are such an amazing inspirational woman Lou. I truly love you xox

An overnight stay with Chris/Cheryl and a lovely BBQ and vege dinner - thank you as my energy and appetite has been pretty depleted last few months.  It was nice to enjoy fresh steamed veges with a little of ironman/ironwoman steak.   That night intense pain - yes lol I prob did too much on my weekend however loved it all the way!

Mon morning after phoning my oncologist for appts that day, we visited a beautiful little tearoom at Sandringham for a light lunch CUPPA COTTAGE 88 Station St Sandringham - just beautiful and all food cooked on premises and serviced on old China!

An urgent/must phone call on the Monday after my weekend home stay to Allan at Epworth hospital - bloods taken that day there - they were still stabilised - so thank you to my ironman/ironwoman whoever they are for the bloods! An afternoon appointment at Epworth rooms to see my oncologist - he spoke to leading Research oncologist at Austin hospital where mesothelioma trials/research is very advanced - unfortunately nothing for me due to severity of situation of advanced tumours/activity/fluid.  However he did say the head radiation oncologist will take a look at my scans.

I called into see a guy who has pleural mesothelioma and is in the oncology ward at Epworth for a chat - was so good to see him again.  He and his beautiful wife have just become grandparents for the 2nd time.

I received an appointment from my oncologist's wonderful and devoted staff/girls in the office who do a fabulous job and make all patients feel very welcome, special and loved.  Julie said Allan had made an appointment me tomorrow (Thursday 22 Jan) to see Patrick Bowden (who I have met over the years thru asbestos awareness/advocacy at conferences).  Pat is a head radiation oncologist.  The appointment at John Fawkner hospital was HOPEFUL.  Pat said he wanted to urgent/immediate 10 day radiation on this 20 cm tumour that has now gone into the stomach/abdomon area and to hopefully zap it back into the linings thru shrinkage.  Because of the nature of being in the stomach I will unfortunately experience severe nausea and fatigue however a small price to pay if it works as I HAVE EVERY FAITH IT WILL!  NEVER NEVER NEVER GIVE UP!!
If I do not have this radiation it is just a matter of time before the blood vessels burst ... .

Yesterday a long car journey to Richmond (1.5 hours due to road works/traffic) and to the Epworth hospital radiation clinic where we signed forms, I had for an hour scans/and marking (tattoos) done on where the radiation will zap the tumour/stomach.  Once again if I let anxiety take over it would have - the realisation of why I was there ... it is a life/death situation, however there is now hope once again - for how long who knows .... .  I know I will give it my best shot!

I would like to thank everyone - family/friends and my facebook family for all your thoughts/phone calls/visits/concerns - your support is unwavering - and gives me hope to keep on going!

Linda Reinstein a big thank you for posting a valor for me - I was overwhelmed by all the beautiful messages I have received - thank you Linda and everyone.
Lou Williams...gentle, strong, fierce,intelligent, beautiful inspire so many around the you Lou!
Posted on January 17, 2015 Lou Williams is one of the most amazing woman I've met during these past 11 years. As an active Mesothelioma Warrior on Facebook, Twitter, and in the world of blogging, ...

I will close this blog now ... my sister is coming for a visit and will be here soon - I need to have a shower and make my self presentable!


Lou is still around, living life to the full and a big part of my world is spreading the words there is no safe asbestos - asbestos kills!  I am still and will continue to be involved in asbestos support/advocacy and awareness on a global scale in UNITY.

Wednesday, January 7, 2015

Active Lou is here - Scan results - all is well! Thank you for your support.

Scan results with my oncologist yesterday evening.   Bloods very low however transfusion on hold.
A medical multi discipline team today will discuss my case and see if anything can be done further.

Scan results - fluid/tumours active - so last chemo has not halted even the fluid.

Bile caused by fluid/tumours pressing and causing tar like substance to come up windpipe.

I am now back on weekly visits to see my oncologist .... .

My organs are fine - it is the pleura linings that are damaged with tumours/fluid giving me hell at the moment!

Thank you to everyone for your love, compassion, understanding and empathy.

Tuesday, January 6, 2015

Palliative care assessment and scan results tomorrow

HAPPY NEW YEAR TO ALL - May it be a great year! 
As I was feeling much better New Year's Eve we hosted a dinner and get-together with friends and family (Linda my SIL who flew to America in April 2014 with me for ADAO's Asbestos Conference) and also BIL Ken came and stayed the night.

We were able to sit outside until 8pm and enjoy the beautiful sun setting, birds feeding and good company.  A light dinner and countdown with TV Melbourne fireworks at midnight - a fabulous night.

Next morning we had a lovely visit from my daughter Jo who lives in Melbourne, her partner David and my beautiful grandkids Ruby, Henry and Oliver - so nice to see them and made my day!

Off to Melbourne Zoo 󾬓󾬓󾬓

On New Year's Eve I had an hour appointment with my local GP Rod Guy at my request to discuss end of life arrangements/palliative care in the home and also why he is the only doctor out of 13 in the clinic who know anything about mesothelioma.  He immediately gave me his home/mobile numbers and said to contact him anytime that I needed to.  If I had to see someone else then to ring him and he would work out a plan with that doctor if need be.

He filled out a form and put on it that I am now in my 12 year of survival ... so in other words I know a lot about mesothelioma) and took it out to the head nurse who in turn faxed it to Macedon Ranges Palliative Care team who are based in Kyneton, Victoria.

Rod asked how come I am very calm and have a calming aura - I said it is my acceptance that I live with mesothelioma.   I also when diagnosed went for 3 years to Petrea King/Quest for Life cancer retreat, Southern Highlands, NSW.  The first time to find peace to die ... 2nd time I was at peace and others would come up to me on that course and ask what my secret for peace was.  - Acceptance and the will to live.  3rd time at request of a friend who had stomach cancer and wanted me to go back with her so she could find peace to die .... she died 2 weeks later.

Rod also asked it what were my thoughts on dying .... I told him I have come close to dying 3 times with having mesothelioma and my last experience was 23 Dec lying on a park bench waiting to see a doctor - feeling so weak I looked up to the sky/beautiful trees and could have closed my eyes as my world had become the sky/trees. 

We now know that I was dangerously anaemic and very depleted of red blood cells hence the Xmas eve blood transfusion for 5 long hours!

2 weeks on and again my bloods are way down ..... and during the night I brought up tar like bile, then for rest of day breathing very very tight and weak.  Scans yesterday - results tomorrow (Weds) evening - so further blog following.

Palliative care assessment today at home with Keith, Charlie, myself and the nurse.  Such peace of mind if I am able to stay at home until end of life or close to it.  They will work in with my oncologist and doctor.   More later on this .......

I DO NOT BELIEVE I AM DYING AT THE MOMENT, however I do believe progression of the bloody cancer is happening.

I am alive and kicking!

To all meso warriors and carers doing it tough - my heart goes out to you.