Saturday, November 9, 2013
Congrats Damon and Keshia (living with mesotheloma and getting married)!
Congratulations to a very happy couple in America! Today Damon Haggan married his sweetheart Keshia. Damon was diagnosed at 18 years of age with mesothelioma. He and Keshia are defying odds and getting on with their life and have married today in front of family and friends.
Wednesday, November 6, 2013
Farewell to a beautiful warrior!
It is with a heavy heart that I write this blog. At 4.30pm today a beautiful and brave warrior Steve who lives on the Gold Coast, Queensland lost his life to mesothelioma cancer. He fought so hard and yet deadly asbestos got him too! My heart goes out to his beautiful wife Gail who is now left to pick up the pieces of their life together without him. This cancer takes the best and Steve was one of the best!
Today we went to the hospital in Melbourne for my picc line 'grease and oil change'. Due to the Melbourne Cup holiday yesterday day chemo ward was very busy and we had to wait 1.5 hours for an available chair to sit in while the picc line was cleaned and dressed. While waiting we went for a walk and had a coffee/green tea at a little cafe then came back and I spoke to a lady who was a 14 year survivor of non hodgkin's lymphoma cancer and as normal chemotherapy had stopped working she was paying for another form of chemotherapy that was not on the 'free list'. Today was her first treatment at this hospital in day chemo ward so I was able to introduce her to all the nursing staff and make her feel welcome. The cost of each treatment for her is $3,000 that she has to pay upfront and cannot claim any of it back, however as she said if it buys her more time and quality time then it is worth it.
While I was waiting for my picc dressing I was able to make contact with a guy Dante and his wife Joyce. Dante has pleural mesothelioma and had just got his scan results - not very good news however his oncologist (mine as well) was changing his chemo regime and continuing with the treatment. It was great to finally meet them and answer their questions. While waiting in my chair with the picc line cover off and the nurse Lana had gone to sterilise her hands .... I leaned over to Joyce with my details on a Bernie Banton Foundation business card. DISASTER!!! My picc line came out!!! A phone call to my oncologist and he said 'take it out completely as it is exposed to air'. So out it came ... and chemo treatment is scheduled for next Tuesday ... and depending on whether my veins are okay for chemo or if I need another picc line inserted we will see on the day! Maybe this explains why last week the nurses couldn't get blood from the picc line!!
Yesterday while working in the garden ..... very slowly from me ... as a tightening of my chest was happening after the lightest work and I would have to sit down to recover for a few minutes .... Keith was burning a pile of dead wood as the fire season approaches next month. All was going to plan .... and the wood pile was almost out .... when bingo - it roared flames up into the air so high and jumped to another huge pile of wood that was dangerously near a huge gum tree. K raced to get a hose and I raced to get a ladder to cut down branches from the gum tree that may have gotten alight. After 2 hours the drama was over and we were both exhausted and grateful that it didn't spread further.
My heart is with Gail and Lisa. May Steve and Tom be resting in peace.
Today we went to the hospital in Melbourne for my picc line 'grease and oil change'. Due to the Melbourne Cup holiday yesterday day chemo ward was very busy and we had to wait 1.5 hours for an available chair to sit in while the picc line was cleaned and dressed. While waiting we went for a walk and had a coffee/green tea at a little cafe then came back and I spoke to a lady who was a 14 year survivor of non hodgkin's lymphoma cancer and as normal chemotherapy had stopped working she was paying for another form of chemotherapy that was not on the 'free list'. Today was her first treatment at this hospital in day chemo ward so I was able to introduce her to all the nursing staff and make her feel welcome. The cost of each treatment for her is $3,000 that she has to pay upfront and cannot claim any of it back, however as she said if it buys her more time and quality time then it is worth it.
While I was waiting for my picc dressing I was able to make contact with a guy Dante and his wife Joyce. Dante has pleural mesothelioma and had just got his scan results - not very good news however his oncologist (mine as well) was changing his chemo regime and continuing with the treatment. It was great to finally meet them and answer their questions. While waiting in my chair with the picc line cover off and the nurse Lana had gone to sterilise her hands .... I leaned over to Joyce with my details on a Bernie Banton Foundation business card. DISASTER!!! My picc line came out!!! A phone call to my oncologist and he said 'take it out completely as it is exposed to air'. So out it came ... and chemo treatment is scheduled for next Tuesday ... and depending on whether my veins are okay for chemo or if I need another picc line inserted we will see on the day! Maybe this explains why last week the nurses couldn't get blood from the picc line!!
Yesterday while working in the garden ..... very slowly from me ... as a tightening of my chest was happening after the lightest work and I would have to sit down to recover for a few minutes .... Keith was burning a pile of dead wood as the fire season approaches next month. All was going to plan .... and the wood pile was almost out .... when bingo - it roared flames up into the air so high and jumped to another huge pile of wood that was dangerously near a huge gum tree. K raced to get a hose and I raced to get a ladder to cut down branches from the gum tree that may have gotten alight. After 2 hours the drama was over and we were both exhausted and grateful that it didn't spread further.
My heart is with Gail and Lisa. May Steve and Tom be resting in peace.
Sunday, November 3, 2013
In between chemo weeks!
Last Tuesday chemotherapy was cancelled due to bloods being down again. 12 November will be my next chemo date for 2 doses (gemcidibine/carboplatin) and most probably a PET/CT scan will be arranged when I see the oncologist on that day for later in the week to see what the state of play is at the moment with the chemo. This chemo regime commenced early August 2013. My hair is getting thin and leaving hair on my pillow, floor and clothing. My energy levels are down however I am OKAY! As for pain - I have no pain and am taking no medication in between chemo! I seem to be in a bubble waiting to pop! The reminder of reality that I am having chemo and fighting for my life is my PICC line in my arm lol.
Sat 26 October we attended the wedding of my brother Chris and his beautiful partner Cheryl. The setting for the wedding was at Rye, Victoria - a garden themed wedding and one that was just beautiful thanks to their friends for hosting it at their property. Chris and Cheryl have just returned home from their honeymoon in Sydney. Friday night they were lucky enough to be in the right place at the right time ... they saw the launch of Asbestos Awareness Month for November, saw the key speaker Don Burke and also watched the beautiful sails of the Opera House turn blue for mesothelioma. Having Asbestos Awareness Month happen is so important for me to see in my lifetime.
As it is not recognised as yet on a national state by state scale, I embrace Asbestos Awareness Month as at the moment all we have in Australia is the last week in November as Asbestos Week. The majority of people by then are in Christmas wind down holiday mode and not really interested in anymore awareness days/weeks of any description. Having a month of asbestos awareness in my opinion, makes much more sense. Bring on next year and a nationally recognised Asbestos Awareness Month! Also with my campaign/petition to have September 26th recognised as a National Mesothelioma Day would be terrific to see in my lifetime. This would then become a global Mesothelioma Day celebrated on 26 September!
We have lost more warriors to this deadly mesothelioma cancer since my last blog. All put up a brave fight and have left behind loved ones who now have to pick up the pieces and make sense of their lives without their loved one thanks to deadly asbestos!
Charlie caught another bunny the other day while we were at the wedding. Our very kind neighbour found it!
Sat 26 October we attended the wedding of my brother Chris and his beautiful partner Cheryl. The setting for the wedding was at Rye, Victoria - a garden themed wedding and one that was just beautiful thanks to their friends for hosting it at their property. Chris and Cheryl have just returned home from their honeymoon in Sydney. Friday night they were lucky enough to be in the right place at the right time ... they saw the launch of Asbestos Awareness Month for November, saw the key speaker Don Burke and also watched the beautiful sails of the Opera House turn blue for mesothelioma. Having Asbestos Awareness Month happen is so important for me to see in my lifetime.
As it is not recognised as yet on a national state by state scale, I embrace Asbestos Awareness Month as at the moment all we have in Australia is the last week in November as Asbestos Week. The majority of people by then are in Christmas wind down holiday mode and not really interested in anymore awareness days/weeks of any description. Having a month of asbestos awareness in my opinion, makes much more sense. Bring on next year and a nationally recognised Asbestos Awareness Month! Also with my campaign/petition to have September 26th recognised as a National Mesothelioma Day would be terrific to see in my lifetime. This would then become a global Mesothelioma Day celebrated on 26 September!
We have lost more warriors to this deadly mesothelioma cancer since my last blog. All put up a brave fight and have left behind loved ones who now have to pick up the pieces and make sense of their lives without their loved one thanks to deadly asbestos!
Charlie caught another bunny the other day while we were at the wedding. Our very kind neighbour found it!
Monday, October 21, 2013
This week guests staying, chemo tomorrow ....
This week has flown! A visit last Tuesday to the hospital for my Picc line to be dressed and bloods taken. No chemo that week was scheduled and just as well - my bloods were still quite low from the week before. Tomorrow picc line to be dressed, bloods taken, appt with my oncologist and the green light for chemo to go ahead gemcidibine and carboplatin.
We have had friends staying for 5 nights from the Gold Coast, Queensland - it was great to be normal for a few days and concentrate on other things instead of chemotherapy/treatments. I held a dinner party the first night as it was Margit's birthday. Spinach and ricotta cannelloni followed by a pear/walnut upside down cake. I was quite exhausted the next day however it was well worth the effort the day before for me.
Twice our friends made lovely meals for us and on Saturday we went out for lunch at the Mt Macedon Hotel - only recently reopened and refurbished. It was a lovely sunny and warm afternoon sitting in the alcove looking outside at the beautiful 100 year old Oak tree.
A visit to Woodend yesterday and when we returned home got stuck into our garden - we are still burning off for the fire season that is fast approaching. Unlike the Blue Mountains area in New South Wales where their season has started with extreme fires and heat, we are so far lucky to have had rain and coolness. The warnings are there for a dry and hot summer .... .
My health - I feel really good and like I am bouncing back to good health once again! Having the forced rest (due to my bloods being low) in between chemotherapy is giving my immune system a fighting chance to regain strength.
On this coming Saturday will be a big day for me - my brother Chris is marrying his beautiful partner Cheryl. I am so pleased to be well enough to attend. The last wedding I attended was last year - my beautiful friends Rod Smith and Karen Banton - what a wonderful wedding that was! I have lovely memories of the magical day.
My heart goes out to those warriors and carers who are doing it tough at the moment.
Steve and Gail Cook are on a fabulous cruise to Tasmania - a toast to both of you!
We have had friends staying for 5 nights from the Gold Coast, Queensland - it was great to be normal for a few days and concentrate on other things instead of chemotherapy/treatments. I held a dinner party the first night as it was Margit's birthday. Spinach and ricotta cannelloni followed by a pear/walnut upside down cake. I was quite exhausted the next day however it was well worth the effort the day before for me.
Twice our friends made lovely meals for us and on Saturday we went out for lunch at the Mt Macedon Hotel - only recently reopened and refurbished. It was a lovely sunny and warm afternoon sitting in the alcove looking outside at the beautiful 100 year old Oak tree.
A visit to Woodend yesterday and when we returned home got stuck into our garden - we are still burning off for the fire season that is fast approaching. Unlike the Blue Mountains area in New South Wales where their season has started with extreme fires and heat, we are so far lucky to have had rain and coolness. The warnings are there for a dry and hot summer .... .
My health - I feel really good and like I am bouncing back to good health once again! Having the forced rest (due to my bloods being low) in between chemotherapy is giving my immune system a fighting chance to regain strength.
On this coming Saturday will be a big day for me - my brother Chris is marrying his beautiful partner Cheryl. I am so pleased to be well enough to attend. The last wedding I attended was last year - my beautiful friends Rod Smith and Karen Banton - what a wonderful wedding that was! I have lovely memories of the magical day.
My heart goes out to those warriors and carers who are doing it tough at the moment.
Steve and Gail Cook are on a fabulous cruise to Tasmania - a toast to both of you!
Wednesday, October 9, 2013
Chemo postponed today due to very low bloods!
This morning a race in traffic to Melbourne for 9.45am appointment at day chemo ward (John Fawkner Hospital) for my PICC clean and dressing/blood taken and across to see Allan Zimet my oncologist for results of the blood test and okay for chemotherapy at 10.45am. Keith took my bloods up to pathology and waited a good half hour for the slip of paper with results.
We waited over an hour for our appointment to see Allan as he had so many patients to see. We knew by the results of the bloods that chemo would not be happening as all very low. Lyall who has peritoneal meso, a long term survivor and good friend was due to come and see me while having chemo. I rang him and instead chatted over the phone. Another guy who has pleural meso was due to have chemo later in the day and I had hoped to meet him. However due to no chemo I left my business card with him and we will make contact thru that. Another guy with mesothelioma of the eye area had chemo yesterday and in 2 weeks we will make contact when I am scheduled for a dose of gemzar and carboplatin on 22 Oct.
In the meantime this gives me 2 weeks off and to get my immune system stronger to tolerate the next lot of chemo! Keith was a bit upset that the chemo did not go ahead - as he explained to me ... every one that I do not have - is that making my chances of 'survival' less. I said 'no way - my body is tolerating a heavy dose of gemzar/carbo (previously gemzar/cisplatin) in one hit and doing its job ... then letting my immune system get stronger by not having the next dose the following week' I am happy with this reasoning and believe it is what is best for my body this time round!
Chemo 22 October to be had, then a wedding to attend on Saturday 26 October. My brother Chris is marrying his beautiful soulmate Cheryl. So pleased I will be well and able to attend! Now for an outfit - no idea what I will wear! Still it will all come together by the big day!
This evening as it is daylight saving and much lighter here until 7pm ... we went for a walk, stopped into see our wonderful neighbours and fed a kookaburra on their verandah. While we were there, our siamese cat Charlie came over the paddocks to visit us and stopped for a pat and cuddle with everyone.
He is now quite content on my lap and happy to sit there while I type away on the computer!
Tomorrow we are going to see the Formula 1 movie 'Rush' looking forward to seeing it and hopefully a cinema with no people in it due to the everyone being at work and kids at school!
To all warriors and carers around the world - sending you a beautiful rainbow of love strength and peace.
We waited over an hour for our appointment to see Allan as he had so many patients to see. We knew by the results of the bloods that chemo would not be happening as all very low. Lyall who has peritoneal meso, a long term survivor and good friend was due to come and see me while having chemo. I rang him and instead chatted over the phone. Another guy who has pleural meso was due to have chemo later in the day and I had hoped to meet him. However due to no chemo I left my business card with him and we will make contact thru that. Another guy with mesothelioma of the eye area had chemo yesterday and in 2 weeks we will make contact when I am scheduled for a dose of gemzar and carboplatin on 22 Oct.
In the meantime this gives me 2 weeks off and to get my immune system stronger to tolerate the next lot of chemo! Keith was a bit upset that the chemo did not go ahead - as he explained to me ... every one that I do not have - is that making my chances of 'survival' less. I said 'no way - my body is tolerating a heavy dose of gemzar/carbo (previously gemzar/cisplatin) in one hit and doing its job ... then letting my immune system get stronger by not having the next dose the following week' I am happy with this reasoning and believe it is what is best for my body this time round!
Chemo 22 October to be had, then a wedding to attend on Saturday 26 October. My brother Chris is marrying his beautiful soulmate Cheryl. So pleased I will be well and able to attend! Now for an outfit - no idea what I will wear! Still it will all come together by the big day!
This evening as it is daylight saving and much lighter here until 7pm ... we went for a walk, stopped into see our wonderful neighbours and fed a kookaburra on their verandah. While we were there, our siamese cat Charlie came over the paddocks to visit us and stopped for a pat and cuddle with everyone.
He is now quite content on my lap and happy to sit there while I type away on the computer!
Tomorrow we are going to see the Formula 1 movie 'Rush' looking forward to seeing it and hopefully a cinema with no people in it due to the everyone being at work and kids at school!
To all warriors and carers around the world - sending you a beautiful rainbow of love strength and peace.
Saturday, October 5, 2013
Turned the corner! Back in control! Day 4 of chemo!
Day 4 of chemo today (gemcidibine and carboplatin) and feeling BACK IN CONTROL of my life!!!
Feeling totally different on this chemo regime instead of the gemcidibine (gemzar) and cisplatin. Virtually no pain - whereas on the cisplatin I felt like I was close to death.
I have been able to manage my side effects with medication, my mind and best of all being able to use my lifeline the computer to email/blog/facebook and keep in touch on a global scale.
I don't want to keep having chemo however I am being given a lifeline so I am giving it my best shot and WINNING as I am back in control of my life!
My heart goes out to the warriors who are doing it tough at the moment - sending a beautiful rainbow of love, strength and smiles to you!
Life is good! Tonight on television we witnessed a fantastic fireworks display on Sydney Harbour, Sydney, New South Wales.
http://www.abc.net.au/news/2013-10-05/live-blogthousands-enjoy-navy-fleet-review-spectacle/5000620
(Click on the above link to see some beautiful fireworks pictures!)
The enormous fireworks display kicked off at 7:40pm (AEST) and lasted 30 minutes.
Fireworks, which were launched from military boats and land, exploded over Sydney Harbour while a lightshow projected Navy history and imagery onto the sails of the Sydney Opera House.
Earlier in the day, Prince Harry and Governor-General Quentin Bryce officially reviewed a fleet of international warships from aboard HMAS Leeuwin on the harbour.
They were welcomed by a 100-gun salute as crowds of people packed onto the foreshore looked on.
The prince then met members of the public who had gathered at The Rocks, before heading to Kirribilli House where he was greeted by Prime Minister Tony Abbott and members of his family.
Feeling totally different on this chemo regime instead of the gemcidibine (gemzar) and cisplatin. Virtually no pain - whereas on the cisplatin I felt like I was close to death.
I have been able to manage my side effects with medication, my mind and best of all being able to use my lifeline the computer to email/blog/facebook and keep in touch on a global scale.
I don't want to keep having chemo however I am being given a lifeline so I am giving it my best shot and WINNING as I am back in control of my life!
My heart goes out to the warriors who are doing it tough at the moment - sending a beautiful rainbow of love, strength and smiles to you!
Life is good! Tonight on television we witnessed a fantastic fireworks display on Sydney Harbour, Sydney, New South Wales.
http://www.abc.net.au/news/2013-10-05/live-blogthousands-enjoy-navy-fleet-review-spectacle/5000620
(Click on the above link to see some beautiful fireworks pictures!)
Thousands of people turned out on the shore of Sydney
Harbour on Saturday night for the International Fleet Review fireworks
and light show spectacular.
The review is a celebration marking 100 years since the Royal Australian Navy fleet first entered Sydney Harbour.The enormous fireworks display kicked off at 7:40pm (AEST) and lasted 30 minutes.
Fireworks, which were launched from military boats and land, exploded over Sydney Harbour while a lightshow projected Navy history and imagery onto the sails of the Sydney Opera House.
Earlier in the day, Prince Harry and Governor-General Quentin Bryce officially reviewed a fleet of international warships from aboard HMAS Leeuwin on the harbour.
They were welcomed by a 100-gun salute as crowds of people packed onto the foreshore looked on.
The prince then met members of the public who had gathered at The Rocks, before heading to Kirribilli House where he was greeted by Prime Minister Tony Abbott and members of his family.
Wednesday, October 2, 2013
Shhh! Feeling good so far on chemo!
Yesterday a windy journey to the hospital in Melbourne (about an hr away if a good run) we left here about 7.20am and got there just before 8.30am for our appointment at Day Chemo. The last few days we have had violent winds here and yesterday was no exception. We have lost a huge tree between us and neighbours, lucky it has not taken out the fence - it is just hanging over it. A few branches near the house however no real damage. Today is a stillness day and birds singing, sun starting to come out - will be nice in the garden later on this afternoon. I have spoken too soon lol! The wind is picking up!
Day chemo changed my PICC line - flush and bloods were taken. Keith took the bloods up to pathology to wait for results and then met me in the waiting room of my oncologist Allan Zimet. Bloods were good apart from white blood cells down slightly. I asked Allan about the results from my mesothelioma marker test (the one that costs us $150 out of pocket) and is the brainwave from Professor Bruce Mitchell in Western Australia. It gives an indication of the mesothelium and true to form mine was up to 12.9 whereas the last test earlier this year was 4.9.
Back to day chemo to be hooked up, premeds into the cannula and bingo away we went. I asked for Allan to order the relaxer tablet that works almost instantly under my tongue - it did help as I was able to drift off for a couple of minutes and wake up again, much to the annoyance lol of Keith and Lyall who were sitting there in conversation with me and bingo I was nodding off. It is the only way for me to cope now when sitting there having chemo injected .... knowing I want to tear it off and get out of there into the fresh air! Ah ... I have been thru too many over the years and it brings back memories .... ... The day chemo nursing staff understand and assist by getting me out of there as quickly as possible - to all of them I say a big thank you - you are wonderful in every way!
Many staff have been there for years and all know me as I do them then - it is a pleasure and makes it so much better when this is the case. Better for them and better for the patient - long term contact especially when they see long term survivors that do make it .. even if we come back sometimes!
Gemcidibine first then carboplatin plus the hydrating fluids/flushing/pre meds .... steroids/anti nausea etc. Gemcidinine 850ml/Carboplatin 300ml.
Out of there just on 2.30pm - we were happy and straight home! I slept in the chair on and off watching TV with Charlie on my lap. (Charlie is our siamese cat). On the computer last for a few hrs then 6 hrs sleep ... and back on the computer. My meds are kicking in .... hoping to have a good day!
We will head out later to pick up our mail up at Mt Macedon, go for a walk up the hill if the sun stays out then home to do a few things.
Have a good day where ever you are.
Below is my beautiful friend Julie Stafford latest book that she will be soon launching. In the meantime for a month the seagull has his own facebook page that you are very welcome to join.
Day chemo changed my PICC line - flush and bloods were taken. Keith took the bloods up to pathology to wait for results and then met me in the waiting room of my oncologist Allan Zimet. Bloods were good apart from white blood cells down slightly. I asked Allan about the results from my mesothelioma marker test (the one that costs us $150 out of pocket) and is the brainwave from Professor Bruce Mitchell in Western Australia. It gives an indication of the mesothelium and true to form mine was up to 12.9 whereas the last test earlier this year was 4.9.
Back to day chemo to be hooked up, premeds into the cannula and bingo away we went. I asked for Allan to order the relaxer tablet that works almost instantly under my tongue - it did help as I was able to drift off for a couple of minutes and wake up again, much to the annoyance lol of Keith and Lyall who were sitting there in conversation with me and bingo I was nodding off. It is the only way for me to cope now when sitting there having chemo injected .... knowing I want to tear it off and get out of there into the fresh air! Ah ... I have been thru too many over the years and it brings back memories .... ... The day chemo nursing staff understand and assist by getting me out of there as quickly as possible - to all of them I say a big thank you - you are wonderful in every way!
Many staff have been there for years and all know me as I do them then - it is a pleasure and makes it so much better when this is the case. Better for them and better for the patient - long term contact especially when they see long term survivors that do make it .. even if we come back sometimes!
Gemcidibine first then carboplatin plus the hydrating fluids/flushing/pre meds .... steroids/anti nausea etc. Gemcidinine 850ml/Carboplatin 300ml.
Out of there just on 2.30pm - we were happy and straight home! I slept in the chair on and off watching TV with Charlie on my lap. (Charlie is our siamese cat). On the computer last for a few hrs then 6 hrs sleep ... and back on the computer. My meds are kicking in .... hoping to have a good day!
We will head out later to pick up our mail up at Mt Macedon, go for a walk up the hill if the sun stays out then home to do a few things.
Have a good day where ever you are.
Below is my beautiful friend Julie Stafford latest book that she will be soon launching. In the meantime for a month the seagull has his own facebook page that you are very welcome to join.
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