Gosh Christmas Eve already! Where did this year go? Spent sitting in a hospital bed me thinks.
2011 was not a good year for me, in fact probably not a good year for New Zealand or a good many other places in the world. Here's hoping 2012 will more than make up for it.
It's been nearly three weeks since I last posted. In that time I've been chemo free and relatively energetic.
Although my energy levels seem to be waning again now, and I cough a lot when I exert myself.
There's been no progress on a schedule for treatment with Adcetris. I would have thought that I would have heard from the oncologist by now and some sort of plan laid out.
I'll be making some phone calls once the holiday break is over and trying to get some answers.
My main concern is that I feel slightly symptomatic. There's a slight occasional ache in my lower pelvis where the lymph node biopsy was taken a few months back, I itch a lot, cough more and still run at least two low grade fevers every day. (sub 38C) So as you can imagine I'm very keen to start treatment.
My blood counts are OKish, haemaglobin is a little low at 104 (normal range 130-175) which would explain the lack of energy. I will have one more blood test next Wednesday and if my counts are stable then I'll have my PICC line removed from my arm. That will be good, means we can fire up the spa-pool and I can enjoy a long soak with a low alcohol beer or two. :)
I found a post from a woman who's son was treated with Adcetris following several unsuccessful chemo regimes. He is now in remission, although she hasn't given the full time frame it's still good to hear stories about other Hodgkin's Lymphoma patients who have had positive results on the drug.
I've been working in my workshop again for the first time since May. Only slowly and in short bursts but I've got a lot done on the car that's been there for most of this year. Slowly getting all the upgrades the customer requested. Luckily he is in no hurry to get it back and the longer it sat there the more things he thought of to get done.
There's now just a few plywood panels to install in the new garage, and a few electrical fittings to connect and it will be ready to be signed off by the council. My father in law has been helping us with that when he can, which is good because I can't man-handle the plywood sheets. :)
However I must say I am a lot more stable on my feet than I've been for some time. I no longer feel like I am at constant risk of falling over, So I must be building some new muscle. My weight is just a tad under 70kg, about 5-8kg under my ultimate goal weight. That won't be achieved until I'm cancer free and off the steroids.
I've set a goal of competing at the "Port Road Sealed Sprint" on Jan 22nd in the Evo and have purchased some new "Federal" brand race tyres to that end. There's been lots of talk lately about how good these tyres are, with them now being the official tyre for Targa competition. A friend of mines son Daniel has used his contacts to get me a set at a very good price, so I am looking forward to testing them on the tight Seaview road circuit. Hopefully I won't be as rusty behind the wheel as I've been at the last two events I've competed in. ;)
Well That's enough from me!
Wishing everyone a great Christmas and New Year Break and that 2012 brings all that you hope for.! Take care ..Ron
Saturday, December 24, 2011
Thursday, December 8, 2011
A plan..
I received a phone call last night from my haematologist, Dr D'Souza.
He was still working and it was well after 8pm. He said that he had spoken to the private oncologist in Palmerston North and that he was keen to have me as a patient and to give the treatment in his clinic.
This would involve driving to Palmerston North once every three weeks for each of the cycles of Adcetris. Treatment would probably start in late January. This suits me just fine as it gives me a nice break over the Christmas period. Intitially we will go for 4 cycles and appraise the results before deciding on more.
Apparently the doctor orders his drugs through a company in Auckland, so he'll be in touch if they need payment up front. Something I'm fairly sure would be the case when you are importing over $80K worth.
It's been a bit of a weird week, up and down. Feeling well one day and horrible the next.
Some days I feel like I am climbing the walls.. almost like being a prisoner in my own body.
It's a mix of the steroids and the chemo. Today I'm not too bad.
I had two units of blood on Monday and that made me feel quite unsettled for a couple of days.
Sometimes the blood sparks you up straight away, other times it takes a few days to work.
It almost feels like you need to run it through your system for a while before it cleans up.. it's a strange thing.
Tomorrow I'm back into the day ward for a blood test. My counts are still a little low going by a test I had on Wednesday so we just need to see which way the counts are heading and give blood or platelets accordingly. Going by previous cycles I should start making new blood again by this weekend anyway. Then it's six weeks of no treatment and hopefully feeling pretty good!
I've got a tonne of stuff to catch up on both around the section and in the workshop, so I'm hoping my energy levels climb high enough. I've been a bit slack when it comes to going on the treadmill and stationary bike. I injured my achilles heal a few months back and I'm still limping.
Perhaps I'll make that a goal... to be a lot fitter for the new year.
..Ron
He was still working and it was well after 8pm. He said that he had spoken to the private oncologist in Palmerston North and that he was keen to have me as a patient and to give the treatment in his clinic.
This would involve driving to Palmerston North once every three weeks for each of the cycles of Adcetris. Treatment would probably start in late January. This suits me just fine as it gives me a nice break over the Christmas period. Intitially we will go for 4 cycles and appraise the results before deciding on more.
Apparently the doctor orders his drugs through a company in Auckland, so he'll be in touch if they need payment up front. Something I'm fairly sure would be the case when you are importing over $80K worth.
It's been a bit of a weird week, up and down. Feeling well one day and horrible the next.
Some days I feel like I am climbing the walls.. almost like being a prisoner in my own body.
It's a mix of the steroids and the chemo. Today I'm not too bad.
I had two units of blood on Monday and that made me feel quite unsettled for a couple of days.
Sometimes the blood sparks you up straight away, other times it takes a few days to work.
It almost feels like you need to run it through your system for a while before it cleans up.. it's a strange thing.
Tomorrow I'm back into the day ward for a blood test. My counts are still a little low going by a test I had on Wednesday so we just need to see which way the counts are heading and give blood or platelets accordingly. Going by previous cycles I should start making new blood again by this weekend anyway. Then it's six weeks of no treatment and hopefully feeling pretty good!
I've got a tonne of stuff to catch up on both around the section and in the workshop, so I'm hoping my energy levels climb high enough. I've been a bit slack when it comes to going on the treadmill and stationary bike. I injured my achilles heal a few months back and I'm still limping.
Perhaps I'll make that a goal... to be a lot fitter for the new year.
..Ron
Friday, December 2, 2011
and up..
It's Friday afternoon December 2nd.
I've just completed my last session (day 8) of my third and now last cycle of Vinorelbine.
Dr D'Souza had suggested today when we spoke that I have a fourth. I declined.
I don't think the benefits are outweighing the results and I want to be well over Christmas/summer break. My blood counts were a little low today, but as I feel so good I suggested we put off a blood transfusion until after the weekend. So I'm back in first thing Monday for another two units.
That then lead us on to Brentuximab (Adcetris). He has given the hospital pharmacy the go ahead to order the drug, just four cycles for now at $20K-ish per cycle. We will then evaluate the results and decide on how many more cycles from there. Each cycle consists of a dose of 1.8mg per Kg of body weight (70kg), given once every three weeks. There's a possibility that we could run anything up to and beyond nine cycles.
He is applying to the Ministry of health for permission for the first cycle to be administered at Wellington Hospital on the grounds that if I have any sort of reaction to the drug they will be able to give me immediate treatment. Something not available in a private clinic.
Other subsequent cycles will be done by a private oncologist probably in Palmerston North, The only one in Wellington is currently unavailable. The reason for all this is that the NZ Govt won't pay for treatment associated with a privately imported drug. I won't even touch on the politics of how unfair that all seems. I'm just happy to have some progress.
Yesterday and today I have had a good amount of energy. Not a huge amount, anyone else would probably call an ambulance if they suddenly started feeling like I do right now. But it's enough to be able to walk around and by pacing myself I have managed to get a fair few errands sorted and things done. I even put a spanner to the car that's been on my hoist for the last six months.
I mildly bumped my arms a couple of times against things and lost a few chunks of skin, such is the damage that prednisone has done in thinning my skin. I think I'll make up some sort of sleeve arrangement to protect my forearms.
I suggested to Sarah that we buy a little run-around for her to drive so that she saves a few dollars on petrol and doesn't wear out the Subaru Impreza STi which is now getting up in the K's, but too good a car to move on. She agreed and we found a really nice low K's Toyota Vitz that by chance was being sold on Trademe by an old friend of mine from the motor-trade.
The only fault we could find was that the air-con wasn't working and I told him that my experience with air-con systems is that they seem to cost around $500 to fix every time they break down. He baulked at the figure and we negotiated a really good deal on the car based on him fixing the air-con at his cost through his work. (he just phoned to say my price was on the money as it needed a new part).
Net result is we got a nice little Toy for $3k under book value and fitted with new tyres and 16" alloy wheels. Bargain!
I've just completed my last session (day 8) of my third and now last cycle of Vinorelbine.
Dr D'Souza had suggested today when we spoke that I have a fourth. I declined.
I don't think the benefits are outweighing the results and I want to be well over Christmas/summer break. My blood counts were a little low today, but as I feel so good I suggested we put off a blood transfusion until after the weekend. So I'm back in first thing Monday for another two units.
That then lead us on to Brentuximab (Adcetris). He has given the hospital pharmacy the go ahead to order the drug, just four cycles for now at $20K-ish per cycle. We will then evaluate the results and decide on how many more cycles from there. Each cycle consists of a dose of 1.8mg per Kg of body weight (70kg), given once every three weeks. There's a possibility that we could run anything up to and beyond nine cycles.
He is applying to the Ministry of health for permission for the first cycle to be administered at Wellington Hospital on the grounds that if I have any sort of reaction to the drug they will be able to give me immediate treatment. Something not available in a private clinic.
Other subsequent cycles will be done by a private oncologist probably in Palmerston North, The only one in Wellington is currently unavailable. The reason for all this is that the NZ Govt won't pay for treatment associated with a privately imported drug. I won't even touch on the politics of how unfair that all seems. I'm just happy to have some progress.
Yesterday and today I have had a good amount of energy. Not a huge amount, anyone else would probably call an ambulance if they suddenly started feeling like I do right now. But it's enough to be able to walk around and by pacing myself I have managed to get a fair few errands sorted and things done. I even put a spanner to the car that's been on my hoist for the last six months.
I mildly bumped my arms a couple of times against things and lost a few chunks of skin, such is the damage that prednisone has done in thinning my skin. I think I'll make up some sort of sleeve arrangement to protect my forearms.
I suggested to Sarah that we buy a little run-around for her to drive so that she saves a few dollars on petrol and doesn't wear out the Subaru Impreza STi which is now getting up in the K's, but too good a car to move on. She agreed and we found a really nice low K's Toyota Vitz that by chance was being sold on Trademe by an old friend of mine from the motor-trade.
The only fault we could find was that the air-con wasn't working and I told him that my experience with air-con systems is that they seem to cost around $500 to fix every time they break down. He baulked at the figure and we negotiated a really good deal on the car based on him fixing the air-con at his cost through his work. (he just phoned to say my price was on the money as it needed a new part).
Net result is we got a nice little Toy for $3k under book value and fitted with new tyres and 16" alloy wheels. Bargain!
Wednesday, November 30, 2011
Up and Down
I had my first session of my third cycle of Vinorelbine on Friday. I have to admit that I really wasn't looking forward to it. I'd been feeling pretty crappy all last week and the thought of more poison wasn't doing much for my state of mind.
In the end it wasn't too bad, I managed to get through the weekend on some fairly low haemoglobin counts by mainly sitting on the couch and doing as little as I could. Standing up and moving around would bring on a coughing fit and tachycardia, so whenever possible I got Sarah to help me by bringing me snacks and drinks.
Monday I returned to the day ward for two units of whole blood. It's now Wednesday and it seems to have helped considerably with my energy and sense of well being. I'm about to make the 150M walk to the letterbox for the second day in a row. Something that would have been out of the question last week.
This Friday see's my last hit of chemo for the foreseeable future. I'm looking forward to slowly regaining a modicum of stamina as the days go by. Though it probably won't start till 10-14 days from Friday. I think 10 days seems to be the nadir for my blood counts.
Still no word on the Adcetris/Brentuximab drug. One of the haematologists, Travis, had a quick look at the stats and pricing on the drug and was able to confirm that it sells for $6200 per vial out of the UK.
We will need three vials per cycle and between six and nine cycles. It's going to be expensive but right now I'm more focused on just getting our hands on it. The two insurance pay outs more than covers the total, so as it's money I would never have seen had I not had cancer it's easier to mentally right off.
Well it's a fantastic day outside, time to make that walk to the letter box and then pop out for a haircut :)
...Ron
In the end it wasn't too bad, I managed to get through the weekend on some fairly low haemoglobin counts by mainly sitting on the couch and doing as little as I could. Standing up and moving around would bring on a coughing fit and tachycardia, so whenever possible I got Sarah to help me by bringing me snacks and drinks.
Monday I returned to the day ward for two units of whole blood. It's now Wednesday and it seems to have helped considerably with my energy and sense of well being. I'm about to make the 150M walk to the letterbox for the second day in a row. Something that would have been out of the question last week.
This Friday see's my last hit of chemo for the foreseeable future. I'm looking forward to slowly regaining a modicum of stamina as the days go by. Though it probably won't start till 10-14 days from Friday. I think 10 days seems to be the nadir for my blood counts.
Still no word on the Adcetris/Brentuximab drug. One of the haematologists, Travis, had a quick look at the stats and pricing on the drug and was able to confirm that it sells for $6200 per vial out of the UK.
We will need three vials per cycle and between six and nine cycles. It's going to be expensive but right now I'm more focused on just getting our hands on it. The two insurance pay outs more than covers the total, so as it's money I would never have seen had I not had cancer it's easier to mentally right off.
Well it's a fantastic day outside, time to make that walk to the letter box and then pop out for a haircut :)
...Ron
Monday, November 21, 2011
Back to normality.
I'm back home again, they discharged me on Friday afternoon. Twenty four hours after they first said I could go once the paperwork was sorted. You soon learn to take these things with a grain of salt.
I really didn't mind the three day stay anyway. Sure the food was still bad, but I was straight onto the dietitian's the minute I was admitted and they must have remembered me from the last few times because without even seeing me I was put on the "Extras" diet the moment I asked. Meaning I could pad my meals out with poached eggs, baked beans, cans of Diet Sprite and biscuits. This was the first time I've come out of hospital weighing the same as when I went in. I think I'm getting the hang of things ;)
I was back in the day ward today for blood tests and a catch-up with the Doctor.
My counts are all either good or good enough, so no need for anymore blood transfusions this week.
However they did admit they had gotten their chemo schedule out of kilter and I am now due back in this Friday rather that next as we all believed to be the case. A little annoying as I was looking forward to my blood counts climbing high enough to be able to do some work around the house.
My energy levels right now are minimal and I can't see me getting much done this week at all. Bother!
I spoke to a fellow patient in the day ward today, the sister of an old friend from my past.
She was in the chair beside me and asked if my surname was Scanlan, I said yes and she asked if I remembered her sister, which of course I did. We were friends some 30+ years ago.
She said her sister had told her to keep and eye out for me. I asked "but how did she know I had cancer?" ... "She reads your blog" was the reply.
It's becoming quite scary the number of people I bump into, both old friends and total strangers that read this blog. To me this has become both a record of my treatment for my future reference and a way of keeping family and friends updated on my status.
Knowing that sometimes it is read by complete strangers makes me feel like I should be putting more effort into my writing skills.. Perhaps more stories of Bob or rampaging quadriplegics to entertain a wider audience?. Ultimately that may happen from time to time but for now I stick with the boring updates. :)
I got a phone call from my Income protection insurance provider today. I finally made a claim two months ago once it became obvious that I would not be returning to physical work any time soon.
A problem immediately became apparent. I believed I had insurance cover for when I was unable to earn an income. But the policy was an indemnity cover. Basically they would cover me for two years based on what I earned the year before.
Well since I've been earning less and less since being first diagnosed back in 2005, last years income was pathetic. So on paper it looked like I was going to be paid zip.
The phone call today was to tell me that because I would have been eligible to make a claim in any of the last six years they would base the pay out on my best trading year over that time.
Net result is a very nice lump sum payment that will go towards softening the blow of the cost of Adcetris when it arrives. (when ever that will be) Full marks to Asteron Insurance for going that extra distance.
Till next time !
I really didn't mind the three day stay anyway. Sure the food was still bad, but I was straight onto the dietitian's the minute I was admitted and they must have remembered me from the last few times because without even seeing me I was put on the "Extras" diet the moment I asked. Meaning I could pad my meals out with poached eggs, baked beans, cans of Diet Sprite and biscuits. This was the first time I've come out of hospital weighing the same as when I went in. I think I'm getting the hang of things ;)
I was back in the day ward today for blood tests and a catch-up with the Doctor.
My counts are all either good or good enough, so no need for anymore blood transfusions this week.
However they did admit they had gotten their chemo schedule out of kilter and I am now due back in this Friday rather that next as we all believed to be the case. A little annoying as I was looking forward to my blood counts climbing high enough to be able to do some work around the house.
My energy levels right now are minimal and I can't see me getting much done this week at all. Bother!
I spoke to a fellow patient in the day ward today, the sister of an old friend from my past.
She was in the chair beside me and asked if my surname was Scanlan, I said yes and she asked if I remembered her sister, which of course I did. We were friends some 30+ years ago.
She said her sister had told her to keep and eye out for me. I asked "but how did she know I had cancer?" ... "She reads your blog" was the reply.
It's becoming quite scary the number of people I bump into, both old friends and total strangers that read this blog. To me this has become both a record of my treatment for my future reference and a way of keeping family and friends updated on my status.
Knowing that sometimes it is read by complete strangers makes me feel like I should be putting more effort into my writing skills.. Perhaps more stories of Bob or rampaging quadriplegics to entertain a wider audience?. Ultimately that may happen from time to time but for now I stick with the boring updates. :)
I got a phone call from my Income protection insurance provider today. I finally made a claim two months ago once it became obvious that I would not be returning to physical work any time soon.
A problem immediately became apparent. I believed I had insurance cover for when I was unable to earn an income. But the policy was an indemnity cover. Basically they would cover me for two years based on what I earned the year before.
Well since I've been earning less and less since being first diagnosed back in 2005, last years income was pathetic. So on paper it looked like I was going to be paid zip.
The phone call today was to tell me that because I would have been eligible to make a claim in any of the last six years they would base the pay out on my best trading year over that time.
Net result is a very nice lump sum payment that will go towards softening the blow of the cost of Adcetris when it arrives. (when ever that will be) Full marks to Asteron Insurance for going that extra distance.
Till next time !
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