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.
Sunday, August 11, 2013
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.
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
Keith
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
Keith
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!
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.
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!
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!
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