mesothelioma-Saturday Again- JUSTICEWORLD

- Hi friends, At this time sharing entitled , I have provided a complete article about mesothelioma

Title : mesothelioma-Saturday Again- JUSTICEWORLD
post : mesothelioma-Saturday Again- JUSTICEWORLD

Well the sun was shining at 6 am but by 10 the clouds have come across and rain looks heavy on the horizon.

 

My GP and lung nurse both phoned with the MRI results, thankfully, and I mean thankfully, the meso isn't affecting my back.  I have a protruding disc between EL4 & 5 which has trapped my nerve root.  I have no idea whether they can manipulate this back in but I hope so.  I don't particularly want to spend the rest of my days in agony with this as well as the blasted meso.

 

Can't help but write that I am feeling rock bottom, with the loss of both Debbie and Helen this brings it home to us that we won't last till our old age but will be taken long before we are due.  It isn't fair that I won't get to claim my pension or become one of those old relatives you want to lock up in a cupboard. 

 

Our beautiful Meso Warrior Lou is also facing up to trying new treatments, a risky one too, having had everything on offer her meso just doesn't know when to quit either and on Monday is going to see about a new radical treatment.  I hope the information is good but more so the risks aren't too big endangering her life.

 

I would like to have attended both funerals of my friends but getting to Plymouth is out of the question at the moment, a long trip when sitting for an hour is all I can do, but I had hoped to hop onto a train to Runcorn for Helen's, under instructions from Barry I am to stay at home and get better for my holiday.  I guess Helen would have said the same.

 

Time I moved my body and went with hubby and mutts across the woods, hopefully moving my body will get my leg working properly and I may improve in mood!

 

I hope you have a good weekend, wherever you are.

Well the sun was shining at 6 am but by 10 the clouds have come across and rain looks heavy on the horizon.

 

My GP and lung nurse both phoned with the MRI results, thankfully, and I mean thankfully, the meso isn't affecting my back.  I have a protruding disc between EL4 & 5 which has trapped my nerve root.  I have no idea whether they can manipulate this back in but I hope so.  I don't particularly want to spend the rest of my days in agony with this as well as the blasted meso.

 

Can't help but write that I am feeling rock bottom, with the loss of both Debbie and Helen this brings it home to us that we won't last till our old age but will be taken long before we are due.  It isn't fair that I won't get to claim my pension or become one of those old relatives you want to lock up in a cupboard. 

 

Our beautiful Meso Warrior Lou is also facing up to trying new treatments, a risky one too, having had everything on offer her meso just doesn't know when to quit either and on Monday is going to see about a new radical treatment.  I hope the information is good but more so the risks aren't too big endangering her life.

 

I would like to have attended both funerals of my friends but getting to Plymouth is out of the question at the moment, a long trip when sitting for an hour is all I can do, but I had hoped to hop onto a train to Runcorn for Helen's, under instructions from Barry I am to stay at home and get better for my holiday.  I guess Helen would have said the same.

 

Time I moved my body and went with hubby and mutts across the woods, hopefully moving my body will get my leg working properly and I may improve in mood!

 

I hope you have a good weekend, wherever you are.

Well the sun was shining at 6 am but by 10 the clouds have come across and rain looks heavy on the horizon.

 

My GP and lung nurse both phoned with the MRI results, thankfully, and I mean thankfully, the meso isn't affecting my back.  I have a protruding disc between EL4 & 5 which has trapped my nerve root.  I have no idea whether they can manipulate this back in but I hope so.  I don't particularly want to spend the rest of my days in agony with this as well as the blasted meso.

 

Can't help but write that I am feeling rock bottom, with the loss of both Debbie and Helen this brings it home to us that we won't last till our old age but will be taken long before we are due.  It isn't fair that I won't get to claim my pension or become one of those old relatives you want to lock up in a cupboard. 

 

Our beautiful Meso Warrior Lou is also facing up to trying new treatments, a risky one too, having had everything on offer her meso just doesn't know when to quit either and on Monday is going to see about a new radical treatment.  I hope the information is good but more so the risks aren't too big endangering her life.

 

I would like to have attended both funerals of my friends but getting to Plymouth is out of the question at the moment, a long trip when sitting for an hour is all I can do, but I had hoped to hop onto a train to Runcorn for Helen's, under instructions from Barry I am to stay at home and get better for my holiday.  I guess Helen would have said the same.

 

Time I moved my body and went with hubby and mutts across the woods, hopefully moving my body will get my leg working properly and I may improve in mood!

 

I hope you have a good weekend, wherever you are.

mesothelioma-A visit to MKMRF Head Quarters- JUSTICEWORLD

- Hi friends, At this time sharing entitled , I have provided a complete article about mesothelioma

Title : mesothelioma-A visit to MKMRF Head Quarters- JUSTICEWORLD
post : mesothelioma-A visit to MKMRF Head Quarters- JUSTICEWORLD

Finally I managed to catch up with the hardworking Chris Knighton at her offices in Wallsend.  I've known Chris since 2005 when The Northern Echo posted an article on her and the charity she set up on behalf of her late husband.

 

Although she started as a coffee morning to support those diagnosed with our cancer she saw the need for research and has fought tooth and nail for us to ensure money is used for research in the hope that something can be found to help.  She also wanted the danger of asbestos to be known and has campaigned tirelessly for this.

 

It was an easy decision for me to dedicate the book to MKMR, I love writing and if it can possibly raise money then nothing could be better.

 

Chris will be selling 'The DreamWeaver's Choice' at the Strawberry Fair on 13th July as well as at the Newcastle Action Day.  Unfortunately I won't be there as we will be on holiday for both.

 

 

 

We need to support our Charities, too many can dilute the funds causing less to be actually done.  It is good to know that in the case of Mesothelioma there are a few only, MKMRF, The June Hancock and Mesothelioma UK, each one working in different areas but all for the same aim, to help us with Mesothelioma.

 

So back to Chris, even hubby came too and after carrying the to boxes into the hospital we had to drag Chris away from her work load to have a cup of tea and a scone.  The coffee shop in the GB Hunter hospital is really old fashioned, the food excellent, all served on china.

 

It was lovely to hear how she met the queen but as her schedule was busy I didn't want to take too much of her precious time up.   I don't know where she gets the energy from, yesterday she was up early and away for her meeting with the scientific board.  No doubt tomorrow she is off doing something else.  I know that it was today only she had enough free time for a catch up.

 

I know she will do well when she speaks in Parliament on our behalf in July.  I hope this time those MP's don't fall asleep or walk out like they did when the last Bill was read.

 

 

 

 

Finally I managed to catch up with the hardworking Chris Knighton at her offices in Wallsend.  I've known Chris since 2005 when The Northern Echo posted an article on her and the charity she set up on behalf of her late husband.

 

Although she started as a coffee morning to support those diagnosed with our cancer she saw the need for research and has fought tooth and nail for us to ensure money is used for research in the hope that something can be found to help.  She also wanted the danger of asbestos to be known and has campaigned tirelessly for this.

 

It was an easy decision for me to dedicate the book to MKMR, I love writing and if it can possibly raise money then nothing could be better.

 

Chris will be selling 'The DreamWeaver's Choice' at the Strawberry Fair on 13th July as well as at the Newcastle Action Day.  Unfortunately I won't be there as we will be on holiday for both.

 

 

 

We need to support our Charities, too many can dilute the funds causing less to be actually done.  It is good to know that in the case of Mesothelioma there are a few only, MKMRF, The June Hancock and Mesothelioma UK, each one working in different areas but all for the same aim, to help us with Mesothelioma.

 

So back to Chris, even hubby came too and after carrying the to boxes into the hospital we had to drag Chris away from her work load to have a cup of tea and a scone.  The coffee shop in the GB Hunter hospital is really old fashioned, the food excellent, all served on china.

 

It was lovely to hear how she met the queen but as her schedule was busy I didn't want to take too much of her precious time up.   I don't know where she gets the energy from, yesterday she was up early and away for her meeting with the scientific board.  No doubt tomorrow she is off doing something else.  I know that it was today only she had enough free time for a catch up.

 

I know she will do well when she speaks in Parliament on our behalf in July.  I hope this time those MP's don't fall asleep or walk out like they did when the last Bill was read.

 

 

 

 

Finally I managed to catch up with the hardworking Chris Knighton at her offices in Wallsend.  I've known Chris since 2005 when The Northern Echo posted an article on her and the charity she set up on behalf of her late husband.

 

Although she started as a coffee morning to support those diagnosed with our cancer she saw the need for research and has fought tooth and nail for us to ensure money is used for research in the hope that something can be found to help.  She also wanted the danger of asbestos to be known and has campaigned tirelessly for this.

 

It was an easy decision for me to dedicate the book to MKMR, I love writing and if it can possibly raise money then nothing could be better.

 

Chris will be selling 'The DreamWeaver's Choice' at the Strawberry Fair on 13th July as well as at the Newcastle Action Day.  Unfortunately I won't be there as we will be on holiday for both.

 

 

 

We need to support our Charities, too many can dilute the funds causing less to be actually done.  It is good to know that in the case of Mesothelioma there are a few only, MKMRF, The June Hancock and Mesothelioma UK, each one working in different areas but all for the same aim, to help us with Mesothelioma.

 

So back to Chris, even hubby came too and after carrying the to boxes into the hospital we had to drag Chris away from her work load to have a cup of tea and a scone.  The coffee shop in the GB Hunter hospital is really old fashioned, the food excellent, all served on china.

 

It was lovely to hear how she met the queen but as her schedule was busy I didn't want to take too much of her precious time up.   I don't know where she gets the energy from, yesterday she was up early and away for her meeting with the scientific board.  No doubt tomorrow she is off doing something else.  I know that it was today only she had enough free time for a catch up.

 

I know she will do well when she speaks in Parliament on our behalf in July.  I hope this time those MP's don't fall asleep or walk out like they did when the last Bill was read.

 

 

 

 

mesothelioma-For Helen- JUSTICEWORLD

- Hi friends, At this time sharing entitled , I have provided a complete article about mesothelioma

Title : mesothelioma-For Helen- JUSTICEWORLD
post : mesothelioma-For Helen- JUSTICEWORLD

A lovely photograph of a lovely lady.  Helen & Barry met up with Gary and I when we were all in LA back in 2011. 

 

In all the years I have been fighting I never thought I would still be here and both Helen and Debbie would have lost the battle before me.  Helen had surgery and thankfully was lucky enough not to have the same amount of pain from it as I.  She lived her life to the full with her wonderful husband Barry. 

 

My heart sank yesterday when Barry rang, I knew the moment his name came up on the mobile phone it was bad news.  My thoughts and prays are with Barry and his wonderful family and I truly hope that the 2 weeks the family spent out in LA will be one of the best times they had.  Renting a house where all the rich and famous live in town.

 

Another warrior also died yesterday, Colin Walker, he was only in his late 40's, he leaves behind a young family too.

 

These deaths are shameful, this cancer is criminal and yet asbestos is still used today.  Yes I am angry, I have grieved for two friends in a matter of days.

A lovely photograph of a lovely lady.  Helen & Barry met up with Gary and I when we were all in LA back in 2011. 

 

In all the years I have been fighting I never thought I would still be here and both Helen and Debbie would have lost the battle before me.  Helen had surgery and thankfully was lucky enough not to have the same amount of pain from it as I.  She lived her life to the full with her wonderful husband Barry. 

 

My heart sank yesterday when Barry rang, I knew the moment his name came up on the mobile phone it was bad news.  My thoughts and prays are with Barry and his wonderful family and I truly hope that the 2 weeks the family spent out in LA will be one of the best times they had.  Renting a house where all the rich and famous live in town.

 

Another warrior also died yesterday, Colin Walker, he was only in his late 40's, he leaves behind a young family too.

 

These deaths are shameful, this cancer is criminal and yet asbestos is still used today.  Yes I am angry, I have grieved for two friends in a matter of days.

A lovely photograph of a lovely lady.  Helen & Barry met up with Gary and I when we were all in LA back in 2011. 

 

In all the years I have been fighting I never thought I would still be here and both Helen and Debbie would have lost the battle before me.  Helen had surgery and thankfully was lucky enough not to have the same amount of pain from it as I.  She lived her life to the full with her wonderful husband Barry. 

 

My heart sank yesterday when Barry rang, I knew the moment his name came up on the mobile phone it was bad news.  My thoughts and prays are with Barry and his wonderful family and I truly hope that the 2 weeks the family spent out in LA will be one of the best times they had.  Renting a house where all the rich and famous live in town.

 

Another warrior also died yesterday, Colin Walker, he was only in his late 40's, he leaves behind a young family too.

 

These deaths are shameful, this cancer is criminal and yet asbestos is still used today.  Yes I am angry, I have grieved for two friends in a matter of days.

mesothelioma-The normal 'ATypical' and Out of Evidence Zone- JUSTICEWORLD

- Hi friends, At this time sharing entitled , I have provided a complete article about mesothelioma

Title : mesothelioma-The normal 'ATypical' and Out of Evidence Zone- JUSTICEWORLD
post : mesothelioma-The normal 'ATypical' and Out of Evidence Zone- JUSTICEWORLD

Yesterday some 8 weeks after my scan I saw my oncologist.  I wish they would read what they say before seeing us again sometimes as I always feel like I am starting from square one in some areas.

 

Ok, the results are mixed, I have meso back around the pericardium, not the 7mm growth right around which the chemo knocked out, but it has regrown, so those slight heavy pains I have had recently tie in. Thank God though no fluid has collected their, although I have two lots of fluid areas in my chest now.

 

I have a couple of large tumours that have changed together with some new nodules and lymph nodes, while others have remained static.  My right lung has undergone changes, the mesothelioma in their has decided to grow again, although only slightly, but growing. 

 

Some of these growths would be ideal to have done with cryoablation because they are singular long tumours but it isn't a practise we have in this country so they will just keep growing.  I asked about the size of the thickening at the bottom of the lung but as he was going to measure it he found another lump so diverted the conversation, leaving me without an answer.

 

Treatment, well it was the 'you are in a Evidence Free Zone, no one has had your length of time with the treatments you have had.'  Together with having 'ATypical' mesothelioma.  He said that trying again with Alimta wasn't a good idea, at 50% I had a reaction and if he went any higher he would kill me.  I told him I thought it was the platins, but he then said because I have had Alimta 3 times it wouldn't make any difference as it hasn't held back the old stuff?  Confused - me too. 

 

I suggested trying Gemcitabine, as Mavis is trying this, he said he wasn't able to give this unless he had further backing.  He said last time he was going to discuss my case with J Steele so I reminded him.  He may get round to it over the next four months.

 

I then said I wouldn't be interested in treatment until at least September at the earliest, although I would hope it was September 14 not this year, unless I took a dramatic turn for the worst.  I said it would be better if they infused me again the time the mesothelioma was growing.  He struggled to get to grips with this, but after explaining several times that the last chemo worked because he infused when I knew my meso was growing and if we did it again when the same process was happening we would get good results.  In fact he is still amazed at how well my mesothelioma responded.

 

So a mixed bag, but if I am in the Evidence Free Zone then surely this is the time to see what happens.  I honestly believe a better system would be if rare (I say that tongue in cheek) cancers  have a couple of specialists around the country then our own oncologists work under them for these types.  All info could be gathered in one place but we would never need to travel to another hospital for treatments.

 

Say if J Steele became chief Meso Onco - all evidence and patients file's were sent to him, maybe we all even consulted with him once.  Then when the standard treatment didn't work he had all other facts before him.  Hubby said this would add to his case load but lets think about it rationally, he sees nearly everyone after a certain point in treatment as we all end up going there asking his opinion at one time or another.

 

Then our own oncologists have someone else to fall back on when we become Zone Free.  Ever since 2009 I have been called this, no one else in the UK has undergone so many treatments as me (so I keep being told) and for my own advocacy I am still here today. 

 

Maybe I am one of the only people who know when my meso is taking a growth pattern, I don't know.  But surely others who have this cancer go through those Adrenalin rushes, temperature drops and pains that come for a few days then go again until 8 or 9 weeks later when they come back.  It may not be as long as my gaps, they could be monthly, but I do believe meso grows in starts and stops, it sprouts like a weed, sending its nasty seeds every so often out onto new clean tissue.

 

My MRI wasn't reported on but the Onco said it was better to stay off any physio until they were sure the meso wasn't involved.  He would chase the report up. funnily enough, well not funny really, my back is feeling much better, just need my leg to stop this White Noise pain.

 

So for me no real surprise as I knew the meso had movement, just wish it would have stayed off the pericardium.  I don't like those heavy heart pains one bit.

 

We are all still in shock over Debbie and as the community on face book mourns her passing it has reminded many of us we have no guarantee on how long we have.  We have to fight our battle as best we can and hope that we have the right doctors behind us to ensure we get the best chance possible.

 

To my fellow bloggers and mesothelioma patients keep well, keep focused on living, until the next time ......

Jan

 

 

Yesterday some 8 weeks after my scan I saw my oncologist.  I wish they would read what they say before seeing us again sometimes as I always feel like I am starting from square one in some areas.

 

Ok, the results are mixed, I have meso back around the pericardium, not the 7mm growth right around which the chemo knocked out, but it has regrown, so those slight heavy pains I have had recently tie in. Thank God though no fluid has collected their, although I have two lots of fluid areas in my chest now.

 

I have a couple of large tumours that have changed together with some new nodules and lymph nodes, while others have remained static.  My right lung has undergone changes, the mesothelioma in their has decided to grow again, although only slightly, but growing. 

 

Some of these growths would be ideal to have done with cryoablation because they are singular long tumours but it isn't a practise we have in this country so they will just keep growing.  I asked about the size of the thickening at the bottom of the lung but as he was going to measure it he found another lump so diverted the conversation, leaving me without an answer.

 

Treatment, well it was the 'you are in a Evidence Free Zone, no one has had your length of time with the treatments you have had.'  Together with having 'ATypical' mesothelioma.  He said that trying again with Alimta wasn't a good idea, at 50% I had a reaction and if he went any higher he would kill me.  I told him I thought it was the platins, but he then said because I have had Alimta 3 times it wouldn't make any difference as it hasn't held back the old stuff?  Confused - me too. 

 

I suggested trying Gemcitabine, as Mavis is trying this, he said he wasn't able to give this unless he had further backing.  He said last time he was going to discuss my case with J Steele so I reminded him.  He may get round to it over the next four months.

 

I then said I wouldn't be interested in treatment until at least September at the earliest, although I would hope it was September 14 not this year, unless I took a dramatic turn for the worst.  I said it would be better if they infused me again the time the mesothelioma was growing.  He struggled to get to grips with this, but after explaining several times that the last chemo worked because he infused when I knew my meso was growing and if we did it again when the same process was happening we would get good results.  In fact he is still amazed at how well my mesothelioma responded.

 

So a mixed bag, but if I am in the Evidence Free Zone then surely this is the time to see what happens.  I honestly believe a better system would be if rare (I say that tongue in cheek) cancers  have a couple of specialists around the country then our own oncologists work under them for these types.  All info could be gathered in one place but we would never need to travel to another hospital for treatments.

 

Say if J Steele became chief Meso Onco - all evidence and patients file's were sent to him, maybe we all even consulted with him once.  Then when the standard treatment didn't work he had all other facts before him.  Hubby said this would add to his case load but lets think about it rationally, he sees nearly everyone after a certain point in treatment as we all end up going there asking his opinion at one time or another.

 

Then our own oncologists have someone else to fall back on when we become Zone Free.  Ever since 2009 I have been called this, no one else in the UK has undergone so many treatments as me (so I keep being told) and for my own advocacy I am still here today. 

 

Maybe I am one of the only people who know when my meso is taking a growth pattern, I don't know.  But surely others who have this cancer go through those Adrenalin rushes, temperature drops and pains that come for a few days then go again until 8 or 9 weeks later when they come back.  It may not be as long as my gaps, they could be monthly, but I do believe meso grows in starts and stops, it sprouts like a weed, sending its nasty seeds every so often out onto new clean tissue.

 

My MRI wasn't reported on but the Onco said it was better to stay off any physio until they were sure the meso wasn't involved.  He would chase the report up. funnily enough, well not funny really, my back is feeling much better, just need my leg to stop this White Noise pain.

 

So for me no real surprise as I knew the meso had movement, just wish it would have stayed off the pericardium.  I don't like those heavy heart pains one bit.

 

We are all still in shock over Debbie and as the community on face book mourns her passing it has reminded many of us we have no guarantee on how long we have.  We have to fight our battle as best we can and hope that we have the right doctors behind us to ensure we get the best chance possible.

 

To my fellow bloggers and mesothelioma patients keep well, keep focused on living, until the next time ......

Jan

 

 

Yesterday some 8 weeks after my scan I saw my oncologist.  I wish they would read what they say before seeing us again sometimes as I always feel like I am starting from square one in some areas.

 

Ok, the results are mixed, I have meso back around the pericardium, not the 7mm growth right around which the chemo knocked out, but it has regrown, so those slight heavy pains I have had recently tie in. Thank God though no fluid has collected their, although I have two lots of fluid areas in my chest now.

 

I have a couple of large tumours that have changed together with some new nodules and lymph nodes, while others have remained static.  My right lung has undergone changes, the mesothelioma in their has decided to grow again, although only slightly, but growing. 

 

Some of these growths would be ideal to have done with cryoablation because they are singular long tumours but it isn't a practise we have in this country so they will just keep growing.  I asked about the size of the thickening at the bottom of the lung but as he was going to measure it he found another lump so diverted the conversation, leaving me without an answer.

 

Treatment, well it was the 'you are in a Evidence Free Zone, no one has had your length of time with the treatments you have had.'  Together with having 'ATypical' mesothelioma.  He said that trying again with Alimta wasn't a good idea, at 50% I had a reaction and if he went any higher he would kill me.  I told him I thought it was the platins, but he then said because I have had Alimta 3 times it wouldn't make any difference as it hasn't held back the old stuff?  Confused - me too. 

 

I suggested trying Gemcitabine, as Mavis is trying this, he said he wasn't able to give this unless he had further backing.  He said last time he was going to discuss my case with J Steele so I reminded him.  He may get round to it over the next four months.

 

I then said I wouldn't be interested in treatment until at least September at the earliest, although I would hope it was September 14 not this year, unless I took a dramatic turn for the worst.  I said it would be better if they infused me again the time the mesothelioma was growing.  He struggled to get to grips with this, but after explaining several times that the last chemo worked because he infused when I knew my meso was growing and if we did it again when the same process was happening we would get good results.  In fact he is still amazed at how well my mesothelioma responded.

 

So a mixed bag, but if I am in the Evidence Free Zone then surely this is the time to see what happens.  I honestly believe a better system would be if rare (I say that tongue in cheek) cancers  have a couple of specialists around the country then our own oncologists work under them for these types.  All info could be gathered in one place but we would never need to travel to another hospital for treatments.

 

Say if J Steele became chief Meso Onco - all evidence and patients file's were sent to him, maybe we all even consulted with him once.  Then when the standard treatment didn't work he had all other facts before him.  Hubby said this would add to his case load but lets think about it rationally, he sees nearly everyone after a certain point in treatment as we all end up going there asking his opinion at one time or another.

 

Then our own oncologists have someone else to fall back on when we become Zone Free.  Ever since 2009 I have been called this, no one else in the UK has undergone so many treatments as me (so I keep being told) and for my own advocacy I am still here today. 

 

Maybe I am one of the only people who know when my meso is taking a growth pattern, I don't know.  But surely others who have this cancer go through those Adrenalin rushes, temperature drops and pains that come for a few days then go again until 8 or 9 weeks later when they come back.  It may not be as long as my gaps, they could be monthly, but I do believe meso grows in starts and stops, it sprouts like a weed, sending its nasty seeds every so often out onto new clean tissue.

 

My MRI wasn't reported on but the Onco said it was better to stay off any physio until they were sure the meso wasn't involved.  He would chase the report up. funnily enough, well not funny really, my back is feeling much better, just need my leg to stop this White Noise pain.

 

So for me no real surprise as I knew the meso had movement, just wish it would have stayed off the pericardium.  I don't like those heavy heart pains one bit.

 

We are all still in shock over Debbie and as the community on face book mourns her passing it has reminded many of us we have no guarantee on how long we have.  We have to fight our battle as best we can and hope that we have the right doctors behind us to ensure we get the best chance possible.

 

To my fellow bloggers and mesothelioma patients keep well, keep focused on living, until the next time ......

Jan

 

 

mesothelioma-For Debbie - JUSTICEWORLD

- Hi friends, At this time sharing entitled , I have provided a complete article about mesothelioma

Title : mesothelioma-For Debbie - JUSTICEWORLD
post : mesothelioma-For Debbie - JUSTICEWORLD

I woke early this morning and instead of my normal routine I went straight onto facebook, my cyber friend and Meso Warrior, Mavis messaged me within a few minutes to give me the shocking news that Debbie, our well known Meso Warrior from Plymouth had past away during the night.

 

Debbie was one of the first to use facebook as a way to bring together all those with mesothelioma and build support pages as well as awareness.  She knew that many found the health sites too hard to read and wanted a community for people to be able to air their thoughts or ask those difficult questions as well as supporting each other through their own individual journeys.

 

She has touched many thousands throughout the world, her courage at trying a new treatment in Germany brought her name to the attention of the press and news coverage.  She woke the South of England up to the fact that Asbestos was a dangerous substance and that many people would keep dying from it.

 

She was loved in the USA and honoured by ADAO in 2012.  Recently she accepted the role of Ambassador for the Mick Knighton Mesothelioma Research Fund.

 

Debbie was due to commence another line of chemotherapy but she had been suffering from a chest infection which started earlier this year.  Unable to take certain antibiotics the infection didn't clear properly, leading to her having to be admitted to a hospice to help control the pain she was suffering due to both the growth and the infection.

 

I am sure many of you will be as shocked and upset at this news as I am, but I am thankful I knew her and her courageous spirit at fighting mesothelioma and finding the time to be their for others was remarkable.

 

We salute you Debbie Muvmuv Brewer, Rest In Peace

 

 

 

I woke early this morning and instead of my normal routine I went straight onto facebook, my cyber friend and Meso Warrior, Mavis messaged me within a few minutes to give me the shocking news that Debbie, our well known Meso Warrior from Plymouth had past away during the night.

 

Debbie was one of the first to use facebook as a way to bring together all those with mesothelioma and build support pages as well as awareness.  She knew that many found the health sites too hard to read and wanted a community for people to be able to air their thoughts or ask those difficult questions as well as supporting each other through their own individual journeys.

 

She has touched many thousands throughout the world, her courage at trying a new treatment in Germany brought her name to the attention of the press and news coverage.  She woke the South of England up to the fact that Asbestos was a dangerous substance and that many people would keep dying from it.

 

She was loved in the USA and honoured by ADAO in 2012.  Recently she accepted the role of Ambassador for the Mick Knighton Mesothelioma Research Fund.

 

Debbie was due to commence another line of chemotherapy but she had been suffering from a chest infection which started earlier this year.  Unable to take certain antibiotics the infection didn't clear properly, leading to her having to be admitted to a hospice to help control the pain she was suffering due to both the growth and the infection.

 

I am sure many of you will be as shocked and upset at this news as I am, but I am thankful I knew her and her courageous spirit at fighting mesothelioma and finding the time to be their for others was remarkable.

 

We salute you Debbie Muvmuv Brewer, Rest In Peace

 

 

 

I woke early this morning and instead of my normal routine I went straight onto facebook, my cyber friend and Meso Warrior, Mavis messaged me within a few minutes to give me the shocking news that Debbie, our well known Meso Warrior from Plymouth had past away during the night.

 

Debbie was one of the first to use facebook as a way to bring together all those with mesothelioma and build support pages as well as awareness.  She knew that many found the health sites too hard to read and wanted a community for people to be able to air their thoughts or ask those difficult questions as well as supporting each other through their own individual journeys.

 

She has touched many thousands throughout the world, her courage at trying a new treatment in Germany brought her name to the attention of the press and news coverage.  She woke the South of England up to the fact that Asbestos was a dangerous substance and that many people would keep dying from it.

 

She was loved in the USA and honoured by ADAO in 2012.  Recently she accepted the role of Ambassador for the Mick Knighton Mesothelioma Research Fund.

 

Debbie was due to commence another line of chemotherapy but she had been suffering from a chest infection which started earlier this year.  Unable to take certain antibiotics the infection didn't clear properly, leading to her having to be admitted to a hospice to help control the pain she was suffering due to both the growth and the infection.

 

I am sure many of you will be as shocked and upset at this news as I am, but I am thankful I knew her and her courageous spirit at fighting mesothelioma and finding the time to be their for others was remarkable.

 

We salute you Debbie Muvmuv Brewer, Rest In Peace

 

 

 

mesothelioma-MRI Jitters- JUSTICEWORLD

- Hi friends, At this time sharing entitled , I have provided a complete article about mesothelioma

Title : mesothelioma-MRI Jitters- JUSTICEWORLD
post : mesothelioma-MRI Jitters- JUSTICEWORLD

It isn't often I get the jitters about going for scans etc, but it was an MRI scan that showed up my original mesothelioma, not that they knew it was that then.  Just my chest lit up like Blackpool illuminations with white spots everywhere.  But it was still another year and some before anyone really looked at it.  I guess because I had it done privately no one thought of checking it further than to see if I had fluid, which I did.  The scan was never looked at again until the surgeon had a peep and knew something was in there.  But hey that was some 10 years ago and this one is different right?  This one is to see why my back etc is causing so much trouble.

 

I came home from work crippled again yesterday, only sitting in my chair for 30 minutes at a time, I don't know whether its the position or not.  Having just got up I have been flat all night and my back seems a little better, hope it stays that way today.

 

I did go and lie in the sun, although I spent most of the time asleep, the additional morphine is making me tired, so last night I knocked the additional 30 on the head and will try a extra nerve tablet today.

 

Bear was a tinker yesterday and stole my tea, he was eyeing it cup up for ages on the little table so I had to give in.

I don't know about everyone else but the swallows around our garden have been flocking in dozens but they are so hard to actually catch on film as they don't stay still for long.  Hubby had his camera out all day and finally managed to snap one just before it took flight again.

Such beautiful colours you would never think they had blue wings when you see them darting here and there.

 

Mavis has being asked to round us all up and fill out this questionnaire on behalf of BLF for patients and carers alike to say what kind of treatment they would like to see.  It is short but please fill it in.

http://www.blf.org.uk/News/Detail/New-national-lung-cancer-survey-launched

 

I am so happy to read that my fellow bloggers are all doing well at the moment, Steve has been given the "Stable" news, Tess has gone for no 5, therefore must be having good results, Mavis is holding her own on the new treatment, Debbie is improving day by day.  I haven't heard from Amanda for a week or so, so I am hoping her and Ray are doing well.  One of the sad stories throughout face book is that of Janelle Bedel, her journey is coming to the closing chapters. 

 

It is heartbreaking when a person so young is diagnosed with this cancer, it is heartbreaking when anyone is, but especially more so when its a young mam.  Janelle has earned the title of Wonder Woman, I just wish a treatment to prevent death was here and available now. 

 

Excited to say the sun is out again, I hope for everyone else it brings the best out in you and you have a wonderful day.

I have also posted an article for mesotheliomahelp.net which you can find here:
http://www.mesotheliomahelp.net/blog/2013/06/mesothelioma-survivor-weighs-in-on-being-her-own-advocate

It isn't often I get the jitters about going for scans etc, but it was an MRI scan that showed up my original mesothelioma, not that they knew it was that then.  Just my chest lit up like Blackpool illuminations with white spots everywhere.  But it was still another year and some before anyone really looked at it.  I guess because I had it done privately no one thought of checking it further than to see if I had fluid, which I did.  The scan was never looked at again until the surgeon had a peep and knew something was in there.  But hey that was some 10 years ago and this one is different right?  This one is to see why my back etc is causing so much trouble.

 

I came home from work crippled again yesterday, only sitting in my chair for 30 minutes at a time, I don't know whether its the position or not.  Having just got up I have been flat all night and my back seems a little better, hope it stays that way today.

 

I did go and lie in the sun, although I spent most of the time asleep, the additional morphine is making me tired, so last night I knocked the additional 30 on the head and will try a extra nerve tablet today.

 

Bear was a tinker yesterday and stole my tea, he was eyeing it cup up for ages on the little table so I had to give in.

I don't know about everyone else but the swallows around our garden have been flocking in dozens but they are so hard to actually catch on film as they don't stay still for long.  Hubby had his camera out all day and finally managed to snap one just before it took flight again.

Such beautiful colours you would never think they had blue wings when you see them darting here and there.

 

Mavis has being asked to round us all up and fill out this questionnaire on behalf of BLF for patients and carers alike to say what kind of treatment they would like to see.  It is short but please fill it in.

http://www.blf.org.uk/News/Detail/New-national-lung-cancer-survey-launched

 

I am so happy to read that my fellow bloggers are all doing well at the moment, Steve has been given the "Stable" news, Tess has gone for no 5, therefore must be having good results, Mavis is holding her own on the new treatment, Debbie is improving day by day.  I haven't heard from Amanda for a week or so, so I am hoping her and Ray are doing well.  One of the sad stories throughout face book is that of Janelle Bedel, her journey is coming to the closing chapters. 

 

It is heartbreaking when a person so young is diagnosed with this cancer, it is heartbreaking when anyone is, but especially more so when its a young mam.  Janelle has earned the title of Wonder Woman, I just wish a treatment to prevent death was here and available now. 

 

Excited to say the sun is out again, I hope for everyone else it brings the best out in you and you have a wonderful day.

I have also posted an article for mesotheliomahelp.net which you can find here:
http://www.mesotheliomahelp.net/blog/2013/06/mesothelioma-survivor-weighs-in-on-being-her-own-advocate

It isn't often I get the jitters about going for scans etc, but it was an MRI scan that showed up my original mesothelioma, not that they knew it was that then.  Just my chest lit up like Blackpool illuminations with white spots everywhere.  But it was still another year and some before anyone really looked at it.  I guess because I had it done privately no one thought of checking it further than to see if I had fluid, which I did.  The scan was never looked at again until the surgeon had a peep and knew something was in there.  But hey that was some 10 years ago and this one is different right?  This one is to see why my back etc is causing so much trouble.

 

I came home from work crippled again yesterday, only sitting in my chair for 30 minutes at a time, I don't know whether its the position or not.  Having just got up I have been flat all night and my back seems a little better, hope it stays that way today.

 

I did go and lie in the sun, although I spent most of the time asleep, the additional morphine is making me tired, so last night I knocked the additional 30 on the head and will try a extra nerve tablet today.

 

Bear was a tinker yesterday and stole my tea, he was eyeing it cup up for ages on the little table so I had to give in.

I don't know about everyone else but the swallows around our garden have been flocking in dozens but they are so hard to actually catch on film as they don't stay still for long.  Hubby had his camera out all day and finally managed to snap one just before it took flight again.

Such beautiful colours you would never think they had blue wings when you see them darting here and there.

 

Mavis has being asked to round us all up and fill out this questionnaire on behalf of BLF for patients and carers alike to say what kind of treatment they would like to see.  It is short but please fill it in.

http://www.blf.org.uk/News/Detail/New-national-lung-cancer-survey-launched

 

I am so happy to read that my fellow bloggers are all doing well at the moment, Steve has been given the "Stable" news, Tess has gone for no 5, therefore must be having good results, Mavis is holding her own on the new treatment, Debbie is improving day by day.  I haven't heard from Amanda for a week or so, so I am hoping her and Ray are doing well.  One of the sad stories throughout face book is that of Janelle Bedel, her journey is coming to the closing chapters. 

 

It is heartbreaking when a person so young is diagnosed with this cancer, it is heartbreaking when anyone is, but especially more so when its a young mam.  Janelle has earned the title of Wonder Woman, I just wish a treatment to prevent death was here and available now. 

 

Excited to say the sun is out again, I hope for everyone else it brings the best out in you and you have a wonderful day.

I have also posted an article for mesotheliomahelp.net which you can find here:
http://www.mesotheliomahelp.net/blog/2013/06/mesothelioma-survivor-weighs-in-on-being-her-own-advocate

mesothelioma-Beautiful Days Ahead- JUSTICEWORLD

- Hi friends, At this time sharing entitled , I have provided a complete article about mesothelioma

Title : mesothelioma-Beautiful Days Ahead- JUSTICEWORLD
post : mesothelioma-Beautiful Days Ahead- JUSTICEWORLD

Hubby read the forecast out for the week, sun, sun and more sun!  The sky was a perfect blue at 6am this morning but I turned over and went back to sleep.  My back felt easier so I thought I would make the most of it.

We took Lexi and Bear over the fields, although only a short walk today as Lexi has to take it easy.  I am still giving her pain relief for her operations, poor thing but I must admit although she has stitches in her bum she is sitting better and I think amazed herself when she actually sat properly instead of having to tuck her leg underneath and flop down.  Removing that pile will make life so much more comfortable for her, sometimes the smallest things can make life so miserable.

 

We came home and sat in the garden, one minute top on the next off.  The clouds were heavy when they came but still it was lovely.  Late afternoon was a lot warmer and Bear decided he wanted to get involved watering the plants.  I loaded him chasing the hosepipe on youtube, wow I didn't know I could do that until I pressed a button and up it went.

http://youtu.be/V5D-flMs2r0

The little devil decided to rush between my legs when he was soaking wet, then Lexi took up the game.  My inside thighs were soaking so off I went and got changed again.  I am so pleased he didn't try to do this Friday or Saturday, I am sure dogs know when things are wrong.  Just wish we could read them as well as they read us.

 

Today I feel great, although I was stiff when I got up from sitting, a few spasms shot down my leg but nothing compared to where I was. 

I just hope when I finally see my onco a week tomorrow now, he will be able to put my mind at rest and tell me it isn't the mesothelioma pushing on any nerves. 

 

I am pleased to report that Debbie is back on the road to recovery with her chest infection and it seems Mavis is doing very well on her 4th line chemo.  They have used Gemcitabine or Gemzar as named in other countries.  This was on trial back in 2007/8 for kidney cancer with good results so hopefully may become another good one for mesothelioma.  From what Mavis has reported pains have ceased, always a good sign as that means the meso has been hit.  I haven't heard from Chris since he finished his 4th line, although he was given a totally different treatment, the 3 in 1 which is sort of on trial but not.  It's hard to believe that Chris and I were both operated on in August 04 on the same day by the same surgeon and both had mesothelioma.  In fact that week there were 4 of us, one gentleman lasted 6 months and I think the other a couple of years.  Chris had suffered with symptoms for 6 months, he even told his doctor he had worked with asbestos but had to wait for months before they checked him for mesothelioma.  I know old history but I guess Chris and I are lucky as we are both still here. 

 

I guess I should go to work next week, only 4 more then we are away, just hope my leg\back etc has greatly improved and I don't have days like Friday when away.

 

A meso friend has been away too and agrees with me, warmth and sun on our bones makes our meso pains fall into the background.  So nature if you are listening, please give us the summer we so desperately need.

 

I hope to all the meso warriors around the world are winning and keeping our man made enemy at bay, to those currently on treatment hold onto the fact it will work.  The sun makes life seem so much more brighter.

Hubby read the forecast out for the week, sun, sun and more sun!  The sky was a perfect blue at 6am this morning but I turned over and went back to sleep.  My back felt easier so I thought I would make the most of it.

We took Lexi and Bear over the fields, although only a short walk today as Lexi has to take it easy.  I am still giving her pain relief for her operations, poor thing but I must admit although she has stitches in her bum she is sitting better and I think amazed herself when she actually sat properly instead of having to tuck her leg underneath and flop down.  Removing that pile will make life so much more comfortable for her, sometimes the smallest things can make life so miserable.

 

We came home and sat in the garden, one minute top on the next off.  The clouds were heavy when they came but still it was lovely.  Late afternoon was a lot warmer and Bear decided he wanted to get involved watering the plants.  I loaded him chasing the hosepipe on youtube, wow I didn't know I could do that until I pressed a button and up it went.

http://youtu.be/V5D-flMs2r0

The little devil decided to rush between my legs when he was soaking wet, then Lexi took up the game.  My inside thighs were soaking so off I went and got changed again.  I am so pleased he didn't try to do this Friday or Saturday, I am sure dogs know when things are wrong.  Just wish we could read them as well as they read us.

 

Today I feel great, although I was stiff when I got up from sitting, a few spasms shot down my leg but nothing compared to where I was. 

I just hope when I finally see my onco a week tomorrow now, he will be able to put my mind at rest and tell me it isn't the mesothelioma pushing on any nerves. 

 

I am pleased to report that Debbie is back on the road to recovery with her chest infection and it seems Mavis is doing very well on her 4th line chemo.  They have used Gemcitabine or Gemzar as named in other countries.  This was on trial back in 2007/8 for kidney cancer with good results so hopefully may become another good one for mesothelioma.  From what Mavis has reported pains have ceased, always a good sign as that means the meso has been hit.  I haven't heard from Chris since he finished his 4th line, although he was given a totally different treatment, the 3 in 1 which is sort of on trial but not.  It's hard to believe that Chris and I were both operated on in August 04 on the same day by the same surgeon and both had mesothelioma.  In fact that week there were 4 of us, one gentleman lasted 6 months and I think the other a couple of years.  Chris had suffered with symptoms for 6 months, he even told his doctor he had worked with asbestos but had to wait for months before they checked him for mesothelioma.  I know old history but I guess Chris and I are lucky as we are both still here. 

 

I guess I should go to work next week, only 4 more then we are away, just hope my leg\back etc has greatly improved and I don't have days like Friday when away.

 

A meso friend has been away too and agrees with me, warmth and sun on our bones makes our meso pains fall into the background.  So nature if you are listening, please give us the summer we so desperately need.

 

I hope to all the meso warriors around the world are winning and keeping our man made enemy at bay, to those currently on treatment hold onto the fact it will work.  The sun makes life seem so much more brighter.

Hubby read the forecast out for the week, sun, sun and more sun!  The sky was a perfect blue at 6am this morning but I turned over and went back to sleep.  My back felt easier so I thought I would make the most of it.

We took Lexi and Bear over the fields, although only a short walk today as Lexi has to take it easy.  I am still giving her pain relief for her operations, poor thing but I must admit although she has stitches in her bum she is sitting better and I think amazed herself when she actually sat properly instead of having to tuck her leg underneath and flop down.  Removing that pile will make life so much more comfortable for her, sometimes the smallest things can make life so miserable.

 

We came home and sat in the garden, one minute top on the next off.  The clouds were heavy when they came but still it was lovely.  Late afternoon was a lot warmer and Bear decided he wanted to get involved watering the plants.  I loaded him chasing the hosepipe on youtube, wow I didn't know I could do that until I pressed a button and up it went.

http://youtu.be/V5D-flMs2r0

The little devil decided to rush between my legs when he was soaking wet, then Lexi took up the game.  My inside thighs were soaking so off I went and got changed again.  I am so pleased he didn't try to do this Friday or Saturday, I am sure dogs know when things are wrong.  Just wish we could read them as well as they read us.

 

Today I feel great, although I was stiff when I got up from sitting, a few spasms shot down my leg but nothing compared to where I was. 

I just hope when I finally see my onco a week tomorrow now, he will be able to put my mind at rest and tell me it isn't the mesothelioma pushing on any nerves. 

 

I am pleased to report that Debbie is back on the road to recovery with her chest infection and it seems Mavis is doing very well on her 4th line chemo.  They have used Gemcitabine or Gemzar as named in other countries.  This was on trial back in 2007/8 for kidney cancer with good results so hopefully may become another good one for mesothelioma.  From what Mavis has reported pains have ceased, always a good sign as that means the meso has been hit.  I haven't heard from Chris since he finished his 4th line, although he was given a totally different treatment, the 3 in 1 which is sort of on trial but not.  It's hard to believe that Chris and I were both operated on in August 04 on the same day by the same surgeon and both had mesothelioma.  In fact that week there were 4 of us, one gentleman lasted 6 months and I think the other a couple of years.  Chris had suffered with symptoms for 6 months, he even told his doctor he had worked with asbestos but had to wait for months before they checked him for mesothelioma.  I know old history but I guess Chris and I are lucky as we are both still here. 

 

I guess I should go to work next week, only 4 more then we are away, just hope my leg\back etc has greatly improved and I don't have days like Friday when away.

 

A meso friend has been away too and agrees with me, warmth and sun on our bones makes our meso pains fall into the background.  So nature if you are listening, please give us the summer we so desperately need.

 

I hope to all the meso warriors around the world are winning and keeping our man made enemy at bay, to those currently on treatment hold onto the fact it will work.  The sun makes life seem so much more brighter.