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!