It certainly does pay to be pushy when it comes to getting an urgent appointment with specialists. I'd had no word last week from Wgtn hospital with regards to making an appointment to see me following my GP faxing them a referral. However today I received a reply from Alwyn D'Souza after I emailed him on Friday asking that he see me at his earliest convenience. In it he said he would have someone call me today and schedule a time to see him this Wednesday. Sure enough within minutes of his email I received a call from the hospital informing me of my 11am appointment.
In the email he also mentioned that he is still waiting for the documentation from The Leonardis Klinik with regards to the storage conditions of my stem cells. Without that paperwork they cannot be returned. What annoys me is that I was assured on several occasions by the klinik manager that it had been completed and sent. If the stem cells have to be written off and left in Germany that will mean a re-harvesting of new stem cells. I'm not sure how well Wellington hospital would take that as the cost is huge.
Health-wise I feel good, but my breathing is pretty crappy. I feel asthmatic most of the time and get breathless easily.
The cough is still there and last night saw a return of the night sweats. The sooner I get back into treatment the better. Fingers crossed that's on the agenda, Wednesdays meeting will reveal all I guess. I'll update you on what we discuss in my next post.
..Ron
Monday, November 10, 2008
Sunday, November 9, 2008
Admiral rd Hillclimb
We just got back from competing at the Admiral Rd hillclimb. What a fantastic day! The weather has been awesome. I think just about everyone that went is suffering from some degree of sunburn as a result.
The turnout was huge, over forty cars this year including NZ's top rally driver Richard Mason fresh from his win of the 2008 Targa (tarmac) Rally last weekend. As I have mentioned in an earlier post I set a new record for the event last year at 37.27 seconds for the 900-metre dash to the top of the hill. However it became evident from the first run that Richard Mason was there to have a crack at beating it. He posted a 37.7 on his first time up the hill, where as I put down a slow 38.98, taking it easy on my first run as I found my limits.
After seeing his time I decided to have a go at getting up the hill in 36 seconds. I lowered my tyre pressures for more grip and raised the turbo boost pressure for more power. Sure enough I laid down a blistering time of 36.71 seconds, where as Richard only managed a mid 38 second run. I was looking good for an outright win. (or so I thought)
For the last run I tried to improve on my earlier time, however I didn't get away from the start very well. The car snapped sideways under power as I up-shifted into second gear and spun all four wheels, loosing precious fractions of a second. They say Richard Mason doesn't like to loose, (who does?) it must be the case because he certainly managed to pull something out of the bag on his last run, putting down a 36.63 second time against my 36.75. Enough to win outright and set a new event record. (The next closest cars were over 3 seconds behind us)
I'm absolutely wrapped with my second place finish. To be swapping the lead with NZ's top rally driver in a car that is a lot older and of lower spec is a great achievement. Add to that the fact that he is extremely race fit having come straight from his win in the 2200+Km Targa event. Where as I have done just two short events in the last 6 months and am about as unfit as I've ever been.
A great day! Roll on next year!
The turnout was huge, over forty cars this year including NZ's top rally driver Richard Mason fresh from his win of the 2008 Targa (tarmac) Rally last weekend. As I have mentioned in an earlier post I set a new record for the event last year at 37.27 seconds for the 900-metre dash to the top of the hill. However it became evident from the first run that Richard Mason was there to have a crack at beating it. He posted a 37.7 on his first time up the hill, where as I put down a slow 38.98, taking it easy on my first run as I found my limits.
After seeing his time I decided to have a go at getting up the hill in 36 seconds. I lowered my tyre pressures for more grip and raised the turbo boost pressure for more power. Sure enough I laid down a blistering time of 36.71 seconds, where as Richard only managed a mid 38 second run. I was looking good for an outright win. (or so I thought)
For the last run I tried to improve on my earlier time, however I didn't get away from the start very well. The car snapped sideways under power as I up-shifted into second gear and spun all four wheels, loosing precious fractions of a second. They say Richard Mason doesn't like to loose, (who does?) it must be the case because he certainly managed to pull something out of the bag on his last run, putting down a 36.63 second time against my 36.75. Enough to win outright and set a new event record. (The next closest cars were over 3 seconds behind us)
I'm absolutely wrapped with my second place finish. To be swapping the lead with NZ's top rally driver in a car that is a lot older and of lower spec is a great achievement. Add to that the fact that he is extremely race fit having come straight from his win in the 2200+Km Targa event. Where as I have done just two short events in the last 6 months and am about as unfit as I've ever been.
A great day! Roll on next year!
Saturday, November 8, 2008
Election Day 08
Wow what a fantastic day it is outside today! It's car cleaning weather!
So far I've managed to clean both the Evo race-car and STi Impreza. I'm not sure I have enough energy left to do the van, I think it can wait till next time.
Tomorrow we are travelling over to the Wairarapa to enter a hillclimb event there.
The event is at Admiral road, near Gladstone. It's a very short hillclimb, only about 40 seconds to the top, but very tight and twisty.
Last year I entered and broke the record that had stood for nearly 25 years by 2 seconds. This time round I'm just in it for the points. I may not be able to make one or two of the next rounds of the 'Duncan McKenzie' series so it's important I build a lead now so I can hopefully win the series again this year.
Health-wise I feel completely normal except this darn cough and persistent asthma.
I have no idea if it's because of the lung involvement, I guess it's got to be, But I have suffered from it in the past when scans showed no involvement. So who knows.
If I wasn't coughing all the time I'd be convinced there was nothing wrong with me.
It's easy to see how some people only find out at the last minute that they have cancer and that it has been with them for years.
I fired an email off yesterday to the haematologist at Wellington hospital. I figure he's had two day's already to schedule me an appointment, so it was time for a hurray along from me. None of this waiting 18 months for a referral! The squeaky wheel gets the oil.!
Well I'd better continue packing the van full of race gear, then load the car onto Murray's truck for the trip over the hill early tomorrow. Then it's off to cast my vote.
I'll post an update on my race results tomorrow.
So far I've managed to clean both the Evo race-car and STi Impreza. I'm not sure I have enough energy left to do the van, I think it can wait till next time.
Tomorrow we are travelling over to the Wairarapa to enter a hillclimb event there.
The event is at Admiral road, near Gladstone. It's a very short hillclimb, only about 40 seconds to the top, but very tight and twisty.
Last year I entered and broke the record that had stood for nearly 25 years by 2 seconds. This time round I'm just in it for the points. I may not be able to make one or two of the next rounds of the 'Duncan McKenzie' series so it's important I build a lead now so I can hopefully win the series again this year.
Health-wise I feel completely normal except this darn cough and persistent asthma.
I have no idea if it's because of the lung involvement, I guess it's got to be, But I have suffered from it in the past when scans showed no involvement. So who knows.
If I wasn't coughing all the time I'd be convinced there was nothing wrong with me.
It's easy to see how some people only find out at the last minute that they have cancer and that it has been with them for years.
I fired an email off yesterday to the haematologist at Wellington hospital. I figure he's had two day's already to schedule me an appointment, so it was time for a hurray along from me. None of this waiting 18 months for a referral! The squeaky wheel gets the oil.!
Well I'd better continue packing the van full of race gear, then load the car onto Murray's truck for the trip over the hill early tomorrow. Then it's off to cast my vote.
I'll post an update on my race results tomorrow.
Thursday, November 6, 2008
Response from Germany.
I've just received word from Germany on what they suggest. I've pasted it below.
Interesting that they have come to the same conclusion that I have.
Dear Ron,
thank you for your e-mail. Dr. Kopic and Dr. Draczynski have reviewed your PET results and would suggest: high-dosage chemotherapy plus stem-cell support - this is the sole option that you have.
Due to the fact that you are young, Dr. Kopic would not recommend conventional therapy, but the above-mentioned high-dosage chemotherapy.
Please let us know what you plan to do. Dr. Kopic would suggest that you have that done at your home address, it will probably be cheaper for you.
If you want to come here, you would have to plan a 4-weeks stay.
If you have any further questions, please feel free to contact us at any time.
Kind regards
Interesting that they have come to the same conclusion that I have.
Dear Ron,
thank you for your e-mail. Dr. Kopic and Dr. Draczynski have reviewed your PET results and would suggest: high-dosage chemotherapy plus stem-cell support - this is the sole option that you have.
Due to the fact that you are young, Dr. Kopic would not recommend conventional therapy, but the above-mentioned high-dosage chemotherapy.
Please let us know what you plan to do. Dr. Kopic would suggest that you have that done at your home address, it will probably be cheaper for you.
If you want to come here, you would have to plan a 4-weeks stay.
If you have any further questions, please feel free to contact us at any time.
Kind regards
Wednesday, November 5, 2008
Bad News.
Yesterday I got a really weird email from my GP saying that he could refer me to Dr Alwyn D'Souza the haematologist at Wellington Hospital if I wanted him to. He also said that Dr Dady had no interest in seeing me.
That came as a huge shock as I had not seen the PET scan results yet but it could only mean one thing. That the scan was positive for Hodgkins.
I quickly fired off emails to both my GP and the Dr at Pacific Radiology saying "please explain". Only Trevor Fitzjohn from Pacific replied.
He said that the results had been confirmed that day and were in the post to me and my GP. That he had contacted Wellington hospital to find out who to send the results to there, and that Dr D'Souza was keen to see me.
The result was a very upsetting and stressful night for Sarah as she worried over what the report would contain. I'd resolved myself to the fact it was not going to be good news.
Sure enough today I got two copies of the written report in the post along with a CD of the scan images.
The scan shows that I have new areas of involvement in my chest and some lung involvement as well. That would explain the cough. There are no other significant areas of involvement. The liver, spleen and bones are still clear.
I have sent the results to Germany for their opinion and I've asked if Dr D'Souza, the haematologist at the Wgtn Blood and cancer centre can see me as soon as possible.
Treatment-wise it looks like I'm back where I was three months ago; High dose chemo with stem cell recovery (transplant). It's way too early to even start planning anything but my thoughts are to have the Autologous stem cell transplant here in NZ.
The reason for this would be that if it failed we could then still investigate other treatments overseas. Doing it the other way round may not be affordable.
So there you have it.. really, really bad news. I'm sorry to have to share that with you. I was so looking forward to finally knocking it on the head once and for all. Those night sweats I had a few weeks ago were the bad news I had suspected they were. As to why they have not returned I have no idea. I'm certainly not complaining.
Mentally I'm as up-beat as ever, I'm sure in the end I'll beat this. It's Sarah that I worry about. As you can imagine she really takes it hard.
I'll update once I've spoken to the haematologist or had word from Germany on their thoughts.
..Ron
That came as a huge shock as I had not seen the PET scan results yet but it could only mean one thing. That the scan was positive for Hodgkins.
I quickly fired off emails to both my GP and the Dr at Pacific Radiology saying "please explain". Only Trevor Fitzjohn from Pacific replied.
He said that the results had been confirmed that day and were in the post to me and my GP. That he had contacted Wellington hospital to find out who to send the results to there, and that Dr D'Souza was keen to see me.
The result was a very upsetting and stressful night for Sarah as she worried over what the report would contain. I'd resolved myself to the fact it was not going to be good news.
Sure enough today I got two copies of the written report in the post along with a CD of the scan images.
The scan shows that I have new areas of involvement in my chest and some lung involvement as well. That would explain the cough. There are no other significant areas of involvement. The liver, spleen and bones are still clear.
I have sent the results to Germany for their opinion and I've asked if Dr D'Souza, the haematologist at the Wgtn Blood and cancer centre can see me as soon as possible.
Treatment-wise it looks like I'm back where I was three months ago; High dose chemo with stem cell recovery (transplant). It's way too early to even start planning anything but my thoughts are to have the Autologous stem cell transplant here in NZ.
The reason for this would be that if it failed we could then still investigate other treatments overseas. Doing it the other way round may not be affordable.
So there you have it.. really, really bad news. I'm sorry to have to share that with you. I was so looking forward to finally knocking it on the head once and for all. Those night sweats I had a few weeks ago were the bad news I had suspected they were. As to why they have not returned I have no idea. I'm certainly not complaining.
Mentally I'm as up-beat as ever, I'm sure in the end I'll beat this. It's Sarah that I worry about. As you can imagine she really takes it hard.
I'll update once I've spoken to the haematologist or had word from Germany on their thoughts.
..Ron
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