If there is one thing that I have learned from five years of dealings with the public health service in this country (and it possibly relates to any country for that matter) and that is that the squeaky wheel gets the oil.
If you feel you have somehow dropped off the radar or are waiting too long for a referral, an appointment, surgery or a scan. Say so! Don't just sit around and presume that someone is on to it. They probably aren't. People most certainly have died waiting for treatment in this country.
On Wednesday after my lung function tests I physically visited the Blood and Cancer Centre reception and voiced my concerns about the three month wait to see my Haematologist, and the overdue CT scan.
I was immediately booked in to see someone in the Haematology dept next Thursday, and by 8am the next day the radiology dept had phoned me, apologised and scheduled my CT scan for next Monday afternoon, just five days after asking. The system works, you just need to know that it needs a bit of a push start sometimes.
I'll post once I know the results of the CT. Fingers crossed for no further growth of the enlarged lymph nodes discovered in my pelvis on the last scans.. Or better still nothing to see at all !! :)
..Ron
Friday, January 7, 2011
Wednesday, January 5, 2011
Lung Function much improved!
Well it certainly pays to take responsibility for your health and treatment.
The decision to nearly triple my prednisone last week when I noticed a sudden decline in my health and the onset of a low grade fever was the right thing to do.
Today I had a lung function test and all parameters were greatly improved over the previous test, including the all important diffusion test, which measures how well the lungs actually get oxygen into the blood. (to the respiratory techies out there..yeah I know I've over simplified that description)
Sarah and I have done the hard walk (read "grunt") to the top of our hill four times in the last five days.
It's part of the Belmont regional park network of tracks and it's a thirty minute steep walk to the top gate.
Each time I've done it it's become easier. Must be doing wonders for my heart and lungs.
I've now got a new respiratory doctor, the previous one has now moved on to another field of medicine elsewhere in the hospital. I brought the new one up to speed today and asked if he agreed with my emergency prednisone regime. He did.
What is really good is that, like me, he doesn't like me being on prednisone for so long and agrees that I need to be off it. To that end he is going to see if there is an alternative treatment we can try.
I popped up to the Blood and Cancer center after my respiratory appointment and prepared to thump the counter over my non-booked CT scan and three month delay in seeing the haematologist. I didn't have to thump.
The young lady behind the counter was most helpful, found me an appointment for next week and promised to chase up the radiology people about my scan and phone me tomorrow.
What's good there is that I can now book a private CT san if I have to and have the results back in time for next weeks appointment. It's a win-win situation. I just want to know one way or another if this darn skin itch is Hodgkins or something else. Either way I can focus on either getting treatment or relaxing.
..Ron
The decision to nearly triple my prednisone last week when I noticed a sudden decline in my health and the onset of a low grade fever was the right thing to do.
Today I had a lung function test and all parameters were greatly improved over the previous test, including the all important diffusion test, which measures how well the lungs actually get oxygen into the blood. (to the respiratory techies out there..yeah I know I've over simplified that description)
Sarah and I have done the hard walk (read "grunt") to the top of our hill four times in the last five days.
It's part of the Belmont regional park network of tracks and it's a thirty minute steep walk to the top gate.
Each time I've done it it's become easier. Must be doing wonders for my heart and lungs.
I've now got a new respiratory doctor, the previous one has now moved on to another field of medicine elsewhere in the hospital. I brought the new one up to speed today and asked if he agreed with my emergency prednisone regime. He did.
What is really good is that, like me, he doesn't like me being on prednisone for so long and agrees that I need to be off it. To that end he is going to see if there is an alternative treatment we can try.
I popped up to the Blood and Cancer center after my respiratory appointment and prepared to thump the counter over my non-booked CT scan and three month delay in seeing the haematologist. I didn't have to thump.
The young lady behind the counter was most helpful, found me an appointment for next week and promised to chase up the radiology people about my scan and phone me tomorrow.
What's good there is that I can now book a private CT san if I have to and have the results back in time for next weeks appointment. It's a win-win situation. I just want to know one way or another if this darn skin itch is Hodgkins or something else. Either way I can focus on either getting treatment or relaxing.
..Ron
Friday, December 31, 2010
Wedding :) ...Relapsed BOOP ?
The weather turned on a fantastic day for our wedding on Saturday 18th Dec.
The morning had started with drizzle and overcast, but by midday the sun was out and stayed that way all day until the rain set in at the end of the evening once people were leaving.
We had a catered "After Party" for 65 friends and family, which went off really well.
Sarah and I found it hard to spread ourselves around the many guests and a few we only saw as they were leaving. Those I have spoken to since have all said they had a great time so I'm guessing we didn't offend anyone by not getting to talk with them all. :)
A couple of pics from the day below.. Others here... Picasa web album
Healthwise I'm in a real quandary at the moment. I started running a constant low grade fever a week ago and developed an asthmatic cough. In light of the reduced lung function from my last test it was a reasonable assumption that my BOOP/COP had relapsed. I tripled my dose of prednisone and the fever stopped the next day.
Interestingly the asthmatic cough is made worse by taking Seratide which is a combination of a steroid preventative and a bronchodilator designed to treat asthma. I've switched over to Flixotide which has just the steroid preventer and the cough is much better.
I have an appointment with the respiratory doctor, and lung function tests on Wednesday 5th Jan (early next week) so I'll find out then if it's a relapse of the BOOP lung inflammation. If it is, it looks like I'll be on the dreaded prednisone for a lot longer, if not forever. sigh.
On top of the possible BOOP relapse I've developed the most annoying skin itch (pruritus). It's been getting slowly worse over the last six months until now it's almost unbearable. It's worse at night as the steroids wear off. I used to have a similar itch when my Hodgkins Lymphoma was active. So that's got me worried too. There are no other Hodgkins symptoms, however prednisone could well be masking them. I'm not scheduled to see the haematologist until the middle of march, and I've seen no sign of an appointment for the CT scan, despite emailing the haematologist and reminding him.
So it's somewhat frustrating to start 2011 with possible relapses of both BOOP and Lymphoma hanging over my head. I'll post an update next week after I've had the lung function tests.
Despite everything I'm determined that 2011 will be another awesome year like 2010. After-all I'm still here 6 years after starting treatment, and I'm still managing to live a full and active life. That's gotta be a good thing!
Happy New Year and all the best for 2011 !! ...Ron
The morning had started with drizzle and overcast, but by midday the sun was out and stayed that way all day until the rain set in at the end of the evening once people were leaving.
We had a catered "After Party" for 65 friends and family, which went off really well.
Sarah and I found it hard to spread ourselves around the many guests and a few we only saw as they were leaving. Those I have spoken to since have all said they had a great time so I'm guessing we didn't offend anyone by not getting to talk with them all. :)
A couple of pics from the day below.. Others here... Picasa web album
Healthwise I'm in a real quandary at the moment. I started running a constant low grade fever a week ago and developed an asthmatic cough. In light of the reduced lung function from my last test it was a reasonable assumption that my BOOP/COP had relapsed. I tripled my dose of prednisone and the fever stopped the next day.
Interestingly the asthmatic cough is made worse by taking Seratide which is a combination of a steroid preventative and a bronchodilator designed to treat asthma. I've switched over to Flixotide which has just the steroid preventer and the cough is much better.
I have an appointment with the respiratory doctor, and lung function tests on Wednesday 5th Jan (early next week) so I'll find out then if it's a relapse of the BOOP lung inflammation. If it is, it looks like I'll be on the dreaded prednisone for a lot longer, if not forever. sigh.
On top of the possible BOOP relapse I've developed the most annoying skin itch (pruritus). It's been getting slowly worse over the last six months until now it's almost unbearable. It's worse at night as the steroids wear off. I used to have a similar itch when my Hodgkins Lymphoma was active. So that's got me worried too. There are no other Hodgkins symptoms, however prednisone could well be masking them. I'm not scheduled to see the haematologist until the middle of march, and I've seen no sign of an appointment for the CT scan, despite emailing the haematologist and reminding him.
So it's somewhat frustrating to start 2011 with possible relapses of both BOOP and Lymphoma hanging over my head. I'll post an update next week after I've had the lung function tests.
Despite everything I'm determined that 2011 will be another awesome year like 2010. After-all I'm still here 6 years after starting treatment, and I'm still managing to live a full and active life. That's gotta be a good thing!
Happy New Year and all the best for 2011 !! ...Ron
Sunday, December 12, 2010
Just a week to go..
It's now only seven days until the wedding. Most people would expect Sarah and I to be getting fairly excited about now.. or anxious, but after being together for such a long time, we aren't expecting a huge change in our actual relationship, just it's status.
We are looking forward to the big day, don't get me wrong. But here we are on a hot Sunday afternoon just seven days out and we both seem more concerned about keeping cool and having a lazy day in the shade than we are concerned about next Saturday's big event. Maybe once things start to wind up later in the week the nerves will kick in :)
It's been a month since I last posted, sorry about that. There's been a lot of new work done around the house. The biggest of which was the construction of a retaining wall and fence to support the steep edge of the driveway and give some measure of safety to people walking along the drive. Previously anyone that tripped off the edge would have a steep 45 degree tumble of about 50 metres before they stopped.
Here's some before and after pics...
Most of the work was done by a friend of mine who volunteered his time, his digger and his truck for a fraction of what it would have cost to do normally. Thanks JP !!
Healthwise I'm feeling pretty good. Just one worrying symptom that I would like to have an answer for. I have an annoying skin itch, mainly at night. This can be a "B" symptom of Hodgkins Lymphoma. Or it could just be side effect of prednisone (although it's rare). I've been waiting several months now for another CT scan to be performed. So far there's no sign of it being scheduled any time soon. I may just pay to have one done privately so I can put my fears to rest.
I had another lung function test last week and the doctor was concerned that the results were worse than previous (which were really good). I found that a little odd as my breathing these days is excellant when compared to what it was last year. I have no cough or difficulty breathing. However I had stopped taking my steroid inhaler because of the improvement and that may explain the drop in the readings.
My respiratory doctor had not prescribed the inhaler, it was something I'd asked my GP to prescribe last year. So it never occurred to me that it may have been responsible for a large degree of the overall improvement in my lung function. I'm back on it again now. :)
I've stopped reducing my prednisone dosage too. I've leveled it out at 16mg a day and will stick with that until my lung functions have stabilised over several months of testing.
There's nothing happening on the motorsport front. Port road sprint kicks off the 2011 year for me and that's not till late January. I've set myself a goal of entering the Dunlop Targa in either 2011 or 2012 depending on finances. I feel I need to give it another crack with good health and taking in what we learned from last time. When you consider that I was able to run in the top five on several stages, and winning one, even with the car badly damaged, running on low boost (low power) and with me incredibly ill with pneumonia. You can see why I feel I need to give it another go!
Lots of interesting projects coming through the workshop.. A Galant VR4 RS for exhaust and intercooler work. The owner was so impressed (his grin was a mile wide) with the work I've done so far that he wants me to complete the restoration of the whole car after New Year.
I have an Evo 4 in for the installation of a replacement Evo5 engine, plus a number of other jobs waiting in the wings.. Doesn't look like I'll be having a very long break over the Christmas period!
Have a great Christmas and all the best for 2011 !! ..Ron
We are looking forward to the big day, don't get me wrong. But here we are on a hot Sunday afternoon just seven days out and we both seem more concerned about keeping cool and having a lazy day in the shade than we are concerned about next Saturday's big event. Maybe once things start to wind up later in the week the nerves will kick in :)
It's been a month since I last posted, sorry about that. There's been a lot of new work done around the house. The biggest of which was the construction of a retaining wall and fence to support the steep edge of the driveway and give some measure of safety to people walking along the drive. Previously anyone that tripped off the edge would have a steep 45 degree tumble of about 50 metres before they stopped.
Here's some before and after pics...
Most of the work was done by a friend of mine who volunteered his time, his digger and his truck for a fraction of what it would have cost to do normally. Thanks JP !!
Healthwise I'm feeling pretty good. Just one worrying symptom that I would like to have an answer for. I have an annoying skin itch, mainly at night. This can be a "B" symptom of Hodgkins Lymphoma. Or it could just be side effect of prednisone (although it's rare). I've been waiting several months now for another CT scan to be performed. So far there's no sign of it being scheduled any time soon. I may just pay to have one done privately so I can put my fears to rest.
I had another lung function test last week and the doctor was concerned that the results were worse than previous (which were really good). I found that a little odd as my breathing these days is excellant when compared to what it was last year. I have no cough or difficulty breathing. However I had stopped taking my steroid inhaler because of the improvement and that may explain the drop in the readings.
My respiratory doctor had not prescribed the inhaler, it was something I'd asked my GP to prescribe last year. So it never occurred to me that it may have been responsible for a large degree of the overall improvement in my lung function. I'm back on it again now. :)
I've stopped reducing my prednisone dosage too. I've leveled it out at 16mg a day and will stick with that until my lung functions have stabilised over several months of testing.
There's nothing happening on the motorsport front. Port road sprint kicks off the 2011 year for me and that's not till late January. I've set myself a goal of entering the Dunlop Targa in either 2011 or 2012 depending on finances. I feel I need to give it another crack with good health and taking in what we learned from last time. When you consider that I was able to run in the top five on several stages, and winning one, even with the car badly damaged, running on low boost (low power) and with me incredibly ill with pneumonia. You can see why I feel I need to give it another go!
Lots of interesting projects coming through the workshop.. A Galant VR4 RS for exhaust and intercooler work. The owner was so impressed (his grin was a mile wide) with the work I've done so far that he wants me to complete the restoration of the whole car after New Year.
I have an Evo 4 in for the installation of a replacement Evo5 engine, plus a number of other jobs waiting in the wings.. Doesn't look like I'll be having a very long break over the Christmas period!
Have a great Christmas and all the best for 2011 !! ..Ron
Saturday, November 13, 2010
Duncan McKenzie sealed sprint series in the bag!
I'd pretty much written off any chance of reclaiming the Duncan McKenzie trophy this year as I had missed two of the seven rounds due to the Evo being in the panel shop. However as luck would have it my competition also missed a round or two and also fell outside the points table on a couple of events.
The end result is that after spinning and coming second at Shelly Bay, and then winning at both Port road sprint last month and the Admiral road Hillclimb last weekend, I have now clinched the series for the fifth time, I believe to this be the first time in the fifty or so years the series has been running.
I'm very proud of this achievement and the fact that I'm still able to post very fast times despite the passing of time and a pretty worn out body. ;)
Here's a link to the Admiral road run down from Motorsport Central .
..and here's the Port road article..
Below is video footage of one of my runs at Admiral road. Pretty darn quick if you ask me!
The end result is that after spinning and coming second at Shelly Bay, and then winning at both Port road sprint last month and the Admiral road Hillclimb last weekend, I have now clinched the series for the fifth time, I believe to this be the first time in the fifty or so years the series has been running.
I'm very proud of this achievement and the fact that I'm still able to post very fast times despite the passing of time and a pretty worn out body. ;)
Here's a link to the Admiral road run down from Motorsport Central .
..and here's the Port road article..
Below is video footage of one of my runs at Admiral road. Pretty darn quick if you ask me!
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