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.