It's Saturday morning. Exactly one week since chemo started.
Yesterday I had my first dendritic cell vaccine shots, plus growth factors for my blood counts.
I was also given a shot of Interferon. I wasn't aware that was part of the treatment, and I haven't quite got my head around how an anti-viral drug will help with things. That's not to say I have doubts, it's just I don't understand the mechanism. I would have thought that it would inhibit the effectiveness of the New Castle disease virus when it's administered.
However studies have shown that Interferon has been quite effective in treating some types of cancer, so who am I to question it.
I was warned to expect "flu" like symptoms within a few hours of having the shots.
I don't physically feel like I have the flu, but I do mentally. I'm in a complete funk this morning.
I do have a lower back-ache which I always get when I'm sick anyway.
Energy levels are non-existent. I can't even walk the 4 metres to the bathroom without having to lay down afterwards. My heart pounding like a freight train.
..3 1/2 hours pass...
I feel a lot better, had four infusions of various things. Biljana is back and she has had a huge impact on my frame of mind. It's like having your mum here to look after you. Don't get me wrong the nurses are all great, but Biljana makes you feel completely cared for and safe. Exactly what you need when you are this fragile and so far away from loved ones.
My bloods are holding up, all except the platelets.. down to 58 today, but still not exactly outside the norm for me. I guess if they drop further over the next few days, which I'd expect, then we shall worry a little more. Right now I'm not intending to cut myself or sneeze too hard.. so I should be fine! ;)
I had a massage yesterday from Bela, was good, but it's a fairly basic thirty minute back massage. Still if it's free I'm going to have as many as I can fit in.
My appetite had been voracious there for a few days, having seconds on everything. They are really tight with the ice cream desserts, so I've been demanding "Kiwi" sized servings.. four scoops. Otherwise you just get that one tiny scoop and a whole banana on top..
However my digestive system has stopped working completely and I've had to skip lunch today as I'm too full to eat. Hopefully the concoction they have given me will fix that. The chemo shuts everything down in your stomach... kills all the good bacteria, plus the steroids completely knock it around.
I have some very grave concerns about they way my stem cells are being stored. Dr K has my shipper in an outside storage room and seems to be adding liquid nitrogen to it every few days.
I told him it was not for storage, but for transporting the stem cells. He just nods and smiles and says "it's OK, we have liquid here". I shall have a talk with Christine on Monday and explain my concerns. The process for priming it for shipping needs to be explained in detail. I think I will supervise that myself. Having said all that, I can't believe for a minute that a trained Haematologist who would have spent decades dealing with frozen samples etc would be that cavalier, so maybe I'm worrying about nothing?
Sarah arrives on Tuesday evening, looking forward to that. These walls are closing in more and more each day. Pam and Angela keep suggesting I go with them on their various exploits to the closest town, Badd Tolz, and other places of interest. However my energy levels are soo low that getting to the front door might be challenge enough right now.
OK that was Saturday.. Catch you tomorrow! ..Ron
Saturday, August 23, 2008
Friday, August 22, 2008
Day 12: Boredom and relief.
That has got to be the most stressful 18 hours I've had in a long, long time.
Last night Dr Kopic handed me a copy of the blood testing results from Greece and left me to decipher it all without any indication of what he himself thought about them.
The lab in Greece does full DNA research on blood cells, it grows the cancer cells and then studies which compounds would be most effective in defeating them. This is not just about what drugs might work, but what chemicals are the cancer cells expressing that is inhibiting the efficacy of previous chemo treatments. From there they recommend various drugs to overcome the problem. One such drug they mentioned requires a six month programme costing US$60,000! Let alone treatment.
So you can imagine the shock and fear that raced through my brain when I believed that we needed to change treatment plans and adopt all these new drugs to overcome resistance. It was like being told they had a cure for me but it was on the moon!
I had a talk with Dr K this morning and he assured me that nothing has changed. He still believes that the current treatment plan is the best way to go for a "positive outcome"
His meaning of the words "very good news" last night is that should I relapse in the future we have several other treatment options, and all look promising. The BEACOPP treatment alone has a 10 year freedom from progression rate of 88%. Just how I would go about getting that treatment in NZ would be another battle, one I hope never to have to fight.
Boredom has set in. Four wall fever they call it. My chemo addled brain is just ticking over, no humour to be found inside this small room. I haven't turned the TV on in days.. not since I was sick last weekend. The problem is I now associate the TV with feeling ill and have no desire to switch it on and test the theory. But let's face it German telly would probably make even the healthiest person ill. I did for a while take some small pleasure in watching the German broadcasts. Little in jokes like the ad where the Germs get in under the rim.. the green germs speaking German.. yes my world is that small!! sigh.
I've tried to be more socialiable the last few days. I now eat lunch and dinner with the girls downstairs. It's now just Pam and her companion Angela I share a table with. Both are devout christians.
Eva left today, I really liked her. She is a 50 something Swedish woman, incredibly thin after years of cancer. She has long grey hair and these huge pale blue eyes. I would say she was a stunner in healthier times. When ever the group talked at the dining table she always looked to me for a nod or a smile of approval. I liked that, I think it showed that she valued my opinion.
There's quite a few more guests here now too. Mainly older German and French men. I have yet to speak to any of them. I may make an attempt at dinner tonight. Depends on my frame of mind.
Ok well this post will have most of you yawning your heads off! Sorry.. but it's good to get stuff out of my skull and onto pixels. Thanks for being here to read it.
Cheers! ..Ron
Last night Dr Kopic handed me a copy of the blood testing results from Greece and left me to decipher it all without any indication of what he himself thought about them.
The lab in Greece does full DNA research on blood cells, it grows the cancer cells and then studies which compounds would be most effective in defeating them. This is not just about what drugs might work, but what chemicals are the cancer cells expressing that is inhibiting the efficacy of previous chemo treatments. From there they recommend various drugs to overcome the problem. One such drug they mentioned requires a six month programme costing US$60,000! Let alone treatment.
So you can imagine the shock and fear that raced through my brain when I believed that we needed to change treatment plans and adopt all these new drugs to overcome resistance. It was like being told they had a cure for me but it was on the moon!
I had a talk with Dr K this morning and he assured me that nothing has changed. He still believes that the current treatment plan is the best way to go for a "positive outcome"
His meaning of the words "very good news" last night is that should I relapse in the future we have several other treatment options, and all look promising. The BEACOPP treatment alone has a 10 year freedom from progression rate of 88%. Just how I would go about getting that treatment in NZ would be another battle, one I hope never to have to fight.
Boredom has set in. Four wall fever they call it. My chemo addled brain is just ticking over, no humour to be found inside this small room. I haven't turned the TV on in days.. not since I was sick last weekend. The problem is I now associate the TV with feeling ill and have no desire to switch it on and test the theory. But let's face it German telly would probably make even the healthiest person ill. I did for a while take some small pleasure in watching the German broadcasts. Little in jokes like the ad where the Germs get in under the rim.. the green germs speaking German.. yes my world is that small!! sigh.
I've tried to be more socialiable the last few days. I now eat lunch and dinner with the girls downstairs. It's now just Pam and her companion Angela I share a table with. Both are devout christians.
Eva left today, I really liked her. She is a 50 something Swedish woman, incredibly thin after years of cancer. She has long grey hair and these huge pale blue eyes. I would say she was a stunner in healthier times. When ever the group talked at the dining table she always looked to me for a nod or a smile of approval. I liked that, I think it showed that she valued my opinion.
There's quite a few more guests here now too. Mainly older German and French men. I have yet to speak to any of them. I may make an attempt at dinner tonight. Depends on my frame of mind.
Ok well this post will have most of you yawning your heads off! Sorry.. but it's good to get stuff out of my skull and onto pixels. Thanks for being here to read it.
Cheers! ..Ron
Confused news on the bloods..
Dr K has the blood results back from Greece. He has given me a copy to read, it's pure chemistry and not at all easy to digest.
I jumped to the "conclusions" paragraph on the last page and read those. This only leaves me more confused as it suggests a totally different drug regimen. It does give a list of drugs that can be used to overcome my cancer's resistance to chemo, but whether they can be added to what we are doing now I have no idea.
The report suggests BEACOPP as the best treatment, but this is administered over months. Not an option for me to have here due to cost. Perhaps I can look at getting it done closer to home and only if the current treatment ends in relapse.
I'll update all this tomorrow once I have spoken at length with the doctors. Just wanted to vent before for head exploded! ..and still no bone marrow report!!
I jumped to the "conclusions" paragraph on the last page and read those. This only leaves me more confused as it suggests a totally different drug regimen. It does give a list of drugs that can be used to overcome my cancer's resistance to chemo, but whether they can be added to what we are doing now I have no idea.
The report suggests BEACOPP as the best treatment, but this is administered over months. Not an option for me to have here due to cost. Perhaps I can look at getting it done closer to home and only if the current treatment ends in relapse.
I'll update all this tomorrow once I have spoken at length with the doctors. Just wanted to vent before for head exploded! ..and still no bone marrow report!!
Thursday, August 21, 2008
How do I feel ? Not bad!
It's 9:30am Thursday. I thought I'd give you all a quick update on how I feel physically.
I still don't know my marrow results yet, and I had some bloods taken earlier so will post those details later. However I think yesterdays fatigue was mainly the huge amount of saline that was pumped into me. I passed about 2liters of it last night.
Three hours pass...
Well while writing the above paragraph I got the call from Dr Glonti to meet him at the Thermotherapy room for another hot date. Today he has chosen to wear a nice beige tee-shirt and smart white trousers for our hot, wet and sweaty rendezvous. A pleasant change from the jeans and white tee he usually wears.
I think although it's only been less than a week, we have already fallen into a routine.
He runs me a nice hot scented bath, I get undressed and stand around naked until he's ready for me. I then soak for twenty minutes or so before he beckons me over to the bed where he attach's his lines and ultimately inserts that probe of his. I then sweat it out for an hour and a half at 39C while he looks on. You'd think after all that I'd at least get a hug when he was done. Sigh.
Footnote: Now I swear I'm not making this up.. Dr G puts on some music, older stuff from a compilation CD. One of the first tracks up.. "Burning Ring of Fire" by Johnny Cash!
Dr Kopic stopped by and said there was still no news on the bone marrow tests. He did say that the blood test results from Greece were here but that he wanted to give them to me together. I keep hoping for this afternoon, but like the other afternoons this week, I doubt I'll hear anything.
On a positive note I'm feeling pretty good! The steroids will have played a big part in it but I realised that all my "B" symptoms have gone. The night sweats, the pulsing back ache. That horrible dry cough I've had for the last 4 months too.. gone, gone, gone. YAY!!
I just have a minor ache in my lower back where the bone marrow was taken from. That's normal.
My blood counts have started to drop. Platelets are already down from 125 to 85. I'm not too concerned about that, but my whites and leukocytes are dropping and they are concerned about me going outside and catching something. I'll start GCSF and Neumega growth factor injections tomorrow to help raise those levels.
Also tomorrow I shall have the first of my antibody treatments. Not sure how that will affect me. Could feel like I have the flu.. could be fine.
Otherwise another boring day with nothing really of interest to report.. Tomorrow maybe..
Pics of my room below...
I still don't know my marrow results yet, and I had some bloods taken earlier so will post those details later. However I think yesterdays fatigue was mainly the huge amount of saline that was pumped into me. I passed about 2liters of it last night.
Three hours pass...
Well while writing the above paragraph I got the call from Dr Glonti to meet him at the Thermotherapy room for another hot date. Today he has chosen to wear a nice beige tee-shirt and smart white trousers for our hot, wet and sweaty rendezvous. A pleasant change from the jeans and white tee he usually wears.
I think although it's only been less than a week, we have already fallen into a routine.
He runs me a nice hot scented bath, I get undressed and stand around naked until he's ready for me. I then soak for twenty minutes or so before he beckons me over to the bed where he attach's his lines and ultimately inserts that probe of his. I then sweat it out for an hour and a half at 39C while he looks on. You'd think after all that I'd at least get a hug when he was done. Sigh.
Footnote: Now I swear I'm not making this up.. Dr G puts on some music, older stuff from a compilation CD. One of the first tracks up.. "Burning Ring of Fire" by Johnny Cash!
Dr Kopic stopped by and said there was still no news on the bone marrow tests. He did say that the blood test results from Greece were here but that he wanted to give them to me together. I keep hoping for this afternoon, but like the other afternoons this week, I doubt I'll hear anything.
On a positive note I'm feeling pretty good! The steroids will have played a big part in it but I realised that all my "B" symptoms have gone. The night sweats, the pulsing back ache. That horrible dry cough I've had for the last 4 months too.. gone, gone, gone. YAY!!
I just have a minor ache in my lower back where the bone marrow was taken from. That's normal.
My blood counts have started to drop. Platelets are already down from 125 to 85. I'm not too concerned about that, but my whites and leukocytes are dropping and they are concerned about me going outside and catching something. I'll start GCSF and Neumega growth factor injections tomorrow to help raise those levels.
Also tomorrow I shall have the first of my antibody treatments. Not sure how that will affect me. Could feel like I have the flu.. could be fine.
Otherwise another boring day with nothing really of interest to report.. Tomorrow maybe..
Pics of my room below...
Some pics...
I thought it might be a good idea to post some pics of the various equipment and people from the clinic as I can get them. I feel like a bit of a snoop doing it, Bela asked if I was a spy when he saw the camera in my pocket. I assured him I wasn't.
The massage was nice, just my back and neck. The doctor meant that I should use the gym to get my legs stimulated. I think my red cell count must have plummeted, the walk up the stairs to my second floor room has left me puffed and with stitch. Blood test tomorrow will tell.
Here's Bela showing me the gym.
The dreaded Thermotherapy "Pizza Oven" I have another date with it tomorrow.
The Aspheresis machine and bed. We used this to harvest my Monocytes last week.
No fun at all. !
The massage was nice, just my back and neck. The doctor meant that I should use the gym to get my legs stimulated. I think my red cell count must have plummeted, the walk up the stairs to my second floor room has left me puffed and with stitch. Blood test tomorrow will tell.
Here's Bela showing me the gym.
The dreaded Thermotherapy "Pizza Oven" I have another date with it tomorrow.
The Aspheresis machine and bed. We used this to harvest my Monocytes last week.
No fun at all. !
Wednesday, August 20, 2008
Day 10: Coming down from steroids.. yuk.
Another blah day today, After four days of extremely powerful steroids today I have none.
It's a horrible, horrible feeling. Your body stops making it's own steroids because of the huge dose, and then bang it's cold turkey when you stop. Could be a few days before mine kick back in. I can't quite describe what it feels like, but it's something akin to a powerful physical anxiety. You body and brain just seem to be missing something, Leaving you with this hollow ache that isn't really a pain but an all consuming feeling of physical angst. Anyway it's crappy and hopefully by tomorrow it will be gone.
Yesterday was as expected... 5 liters of Iv drips that consumed my entire day and didn't finish till 3am this morning. They have now been completed and I'm told there will be no more for a while. Just the std three daily infusions totalling about one liter.
There's still no word on the bone marrow results, that's a real pain. I'll post those as soon as I know. They have not sent my stem cells back yet, and Dr Kopic said today that he might test them for anti-bodies, Which would help him develop an even more targeted treatment. It's good to know he's constantly looking for options. I think he's a lot like me, hates to be beaten by anything. Certainly good to have him on my team that's for sure!
The summer holidays have bitten into the staff numbers here. As soon as I get to know someone they announce that they are away for a few weeks. The only real affect it seems to have on me is that Dr K has to try and converse directly with me, which can be difficult as his English is poor. I find myself trying to break down my sentences into the simplest terms. I hope not too much is lost in translation.
The staff are incredible though, they want you to phone them for the slightest thing. Pain relief anything.. They give no impression that you are disturbing them. In fact it's almost as if they would be upset if you didn't call.
Today at 1pm I have an appointment with Bela the physiotherapist. Should be interesting!, he has promised me a massage, mainly in my feet and legs to work the steroids out of the muscles or some such thing. He's a big tall man of about 50 something, I hope he's gentle!
Then tomorrow it's back with the thermaltherapy, the probes and the sweating. Oh Yay!
Met another two ladies today at breakfast. Eleanor has gone home, Eva and Pam are still here. There are others, but like me ,they hide away at meal times.
The new ones are Dawn and her companion Tania from London. You know it doesn't seem to matter where these people come from, Sweden, Canada, America or the UK. The stories are the same. Doctors with no resources, stuck in a system where drugs are not available, where waiting lists are so long that patients cancers get worse as they wait, some must ultimately die waiting.
To me the choice was clear, "bugger this! I'm off!" Was what my instincts told me. But so many people are stunned like possums in the headlights of an oncoming car, they just want to believe that it will be all OK, and that what is on offer at home will do the trick, just make me well, make it all go away. Perhaps they don't want to know.. bite their lip and pray. The system does work for a great deal of people, I'm not disputing that. However if at some point it stops working, you need to look elsewhere. It would appear that most people don't. "If nothing changes, then nothing changes" as I've often said.
Pam even told me that some of her fellow patients in Canada thought she was nuts for coming here, saying that the doctors were amazing back home. Heck the best doctors in the world are useless if they are working in a flawed system! The best captain in the world won't get you home in a leaky boat.
OK enough rambling.. Shall go and prepare for my massage.. will let you know if it turns into an adventure! :)
..R
It's a horrible, horrible feeling. Your body stops making it's own steroids because of the huge dose, and then bang it's cold turkey when you stop. Could be a few days before mine kick back in. I can't quite describe what it feels like, but it's something akin to a powerful physical anxiety. You body and brain just seem to be missing something, Leaving you with this hollow ache that isn't really a pain but an all consuming feeling of physical angst. Anyway it's crappy and hopefully by tomorrow it will be gone.
Yesterday was as expected... 5 liters of Iv drips that consumed my entire day and didn't finish till 3am this morning. They have now been completed and I'm told there will be no more for a while. Just the std three daily infusions totalling about one liter.
There's still no word on the bone marrow results, that's a real pain. I'll post those as soon as I know. They have not sent my stem cells back yet, and Dr Kopic said today that he might test them for anti-bodies, Which would help him develop an even more targeted treatment. It's good to know he's constantly looking for options. I think he's a lot like me, hates to be beaten by anything. Certainly good to have him on my team that's for sure!
The summer holidays have bitten into the staff numbers here. As soon as I get to know someone they announce that they are away for a few weeks. The only real affect it seems to have on me is that Dr K has to try and converse directly with me, which can be difficult as his English is poor. I find myself trying to break down my sentences into the simplest terms. I hope not too much is lost in translation.
The staff are incredible though, they want you to phone them for the slightest thing. Pain relief anything.. They give no impression that you are disturbing them. In fact it's almost as if they would be upset if you didn't call.
Today at 1pm I have an appointment with Bela the physiotherapist. Should be interesting!, he has promised me a massage, mainly in my feet and legs to work the steroids out of the muscles or some such thing. He's a big tall man of about 50 something, I hope he's gentle!
Then tomorrow it's back with the thermaltherapy, the probes and the sweating. Oh Yay!
Met another two ladies today at breakfast. Eleanor has gone home, Eva and Pam are still here. There are others, but like me ,they hide away at meal times.
The new ones are Dawn and her companion Tania from London. You know it doesn't seem to matter where these people come from, Sweden, Canada, America or the UK. The stories are the same. Doctors with no resources, stuck in a system where drugs are not available, where waiting lists are so long that patients cancers get worse as they wait, some must ultimately die waiting.
To me the choice was clear, "bugger this! I'm off!" Was what my instincts told me. But so many people are stunned like possums in the headlights of an oncoming car, they just want to believe that it will be all OK, and that what is on offer at home will do the trick, just make me well, make it all go away. Perhaps they don't want to know.. bite their lip and pray. The system does work for a great deal of people, I'm not disputing that. However if at some point it stops working, you need to look elsewhere. It would appear that most people don't. "If nothing changes, then nothing changes" as I've often said.
Pam even told me that some of her fellow patients in Canada thought she was nuts for coming here, saying that the doctors were amazing back home. Heck the best doctors in the world are useless if they are working in a flawed system! The best captain in the world won't get you home in a leaky boat.
OK enough rambling.. Shall go and prepare for my massage.. will let you know if it turns into an adventure! :)
..R
Tuesday, August 19, 2008
Day 9: Not much happening..
After yesterday's marathon IV infusion that lasted for 38 hours with just a break for breakfast and a walk, I really had hoped it would be a shorter day today. Alas the nurse has just dropped off eight bottles, about five liters of various concoctions. The main one being saline to continue to flush my kidneys. Last night it took till 1am to complete the drips. Will be the same again today I guess.
Nausea is a big problem, regular injections of Zofran into my IV line helps a little, but ultimately laying down is the best fix. Typing at my desk is probably the worst thing for it. Oh well.
Still no news on the bone marrow histology. Dr Kopic thinks tomorrow... sigh.
OK back to bed.. it's midday, 30C outside but I just want to rest.
John Futter sent me this humorous item on combining English and German languages .. enjoy..
The EU Commission has just announced an agreement whereby English will be the official language of the European Union rather than German, which was the other possibility.
As part of the negotiations, the British Government conceded that English spelling had some room for improvement and has accepted a 5- year phase-in plan that would become known as "Euro-English".
In the first year, "s" will replace the soft "c". Sertainly, this will make the sivil servants jump with joy.
The hard "c" will be dropped in favour of "k". This should klear up konfusion, and keyboards kan have one less letter
There will be growing publik enthusiasm in the sekond year when the troublesome "ph" will be replaced with "f". This will make words like fotograf 20% shorter.
In the 3rd year, publik akseptanse of the new spelling kan be expekted to reach the stage where more komplikated changes are possible.
Governments will enkourage the removal of double letters which have always ben a deterent to akurate speling.
Also, al wil agre that the horibl mes of the silent "e" in the languag is disgrasful and it should go away.
By the 4th yer people wil be reseptiv to steps such as replasing "th" with "z" and "w" with "v".
During ze fifz yer, ze unesesary "o" kan be dropd from vords kontaining "ou" and after ziz fifz yer, ve vil hav a reil sensi bl riten styl.
Zer vil be no mor trubl or difikultis and evrivun vil find it ezi tu understand ech oza. Ze drem of a united urop vil finali kum tru.
Und efter ze fifz yer, ve vil al be speking German like zey vunted in ze forst plas.
Nausea is a big problem, regular injections of Zofran into my IV line helps a little, but ultimately laying down is the best fix. Typing at my desk is probably the worst thing for it. Oh well.
Still no news on the bone marrow histology. Dr Kopic thinks tomorrow... sigh.
OK back to bed.. it's midday, 30C outside but I just want to rest.
John Futter sent me this humorous item on combining English and German languages .. enjoy..
The EU Commission has just announced an agreement whereby English will be the official language of the European Union rather than German, which was the other possibility.
As part of the negotiations, the British Government conceded that English spelling had some room for improvement and has accepted a 5- year phase-in plan that would become known as "Euro-English".
In the first year, "s" will replace the soft "c". Sertainly, this will make the sivil servants jump with joy.
The hard "c" will be dropped in favour of "k". This should klear up konfusion, and keyboards kan have one less letter
There will be growing publik enthusiasm in the sekond year when the troublesome "ph" will be replaced with "f". This will make words like fotograf 20% shorter.
In the 3rd year, publik akseptanse of the new spelling kan be expekted to reach the stage where more komplikated changes are possible.
Governments will enkourage the removal of double letters which have always ben a deterent to akurate speling.
Also, al wil agre that the horibl mes of the silent "e" in the languag is disgrasful and it should go away.
By the 4th yer people wil be reseptiv to steps such as replasing "th" with "z" and "w" with "v".
During ze fifz yer, ze unesesary "o" kan be dropd from vords kontaining "ou" and after ziz fifz yer, ve vil hav a reil sensi bl riten styl.
Zer vil be no mor trubl or difikultis and evrivun vil find it ezi tu understand ech oza. Ze drem of a united urop vil finali kum tru.
Und efter ze fifz yer, ve vil al be speking German like zey vunted in ze forst plas.
Monday, August 18, 2008
Ein Spaziergang im Park: A walk in the park:
I went down to the front desk and asked Karina for a map of the region, which she happily supplied me. However as she had to admit there's not a lot in the way of shops etc in the local vicinity. Karina is probably the youngest staff member here. She speaks fluent English, a not unpleasant looking brunette, she's in her early twenties and like most of the young women I have seen so far, has a liking for "painted on" jeans and stiletto boots.
I pop back to my room for my sun-glasses, Rally NZ cap and the camera Murray has kindly lent me. Then it's off out the door and up the narrow pathway that leads to the main road.
I pop back to my room for my sun-glasses, Rally NZ cap and the camera Murray has kindly lent me. Then it's off out the door and up the narrow pathway that leads to the main road.
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Having already seen what was to offer last trip out, I decided to head down a road that had lots of sign posts adorning a pole on the corner. It was a good decision. I found a park, quite a big one, that joined all the streets together, a kind of green belt in the middle of town.
There were quite a few people sitting on the many park benches soaking up the sun. I did likewise.
On the way back I thought I'd see if I could find the Hotel Kilian. It had been recommended to me by Eleanor as a good place to stay if I was between treatments as it would save me a huge amount in hospital fees. I came across this really large three story building that looked like a Travel-Lodge, so, not finding any signage in English at the front gate, decided to walk through the car-park and up to the front doors.
It was about this point that I realised that every single person I saw was on crutches. (OK, there was this one guy in a wheelchair). It became obvious that either this was an orthopaedic hospital or the management took a very tough line on late payers! No, I won't be staying there.
A little up the road I found the Killian, It looks nice. A quick check on the internet shows that rooms are spacious with all facilities, including internet for just $100 a night for two. That's about $2100 less than staying here! I'll definitely be looking into that. I hope they aren't fully booked the week after next when Sarah has arrived.
OK that's about it for today, it's only 2:30pm but unless some huge catastrophe befalls me while being infused with another three liters of saline (it's to flush my kidneys they tell me), I'll call it a day and watch a movie or two.
Oh BTW I'm feeling OK now.. still feel off colour but can ignore it to a certain extent.
Day 8 and the night of wind and pain.
Well what a night that was! In fact no.. what a horrid 24 hours!
It started at 10:30 am Sunday when I had the second part of my chemo.
Although they give you all sorts of pain relief and anti-emetics to stop you throwing up, there is no escaping the fact that your quite ill. Not throwing up is just a small bonus. You still feel like it's the day after an all night bender and the room should be spinning.
I was too uncomfortable to write much in the afternoon, preferring the relative safety of my bed for the next 18 hours. Through out that time I had two IV drips continuously pumping more and more drugs into me. It's hard mentally to cope with that when you are feeling so unwell and just want it to stop. Every hour right through the night I was woken by Shkoza who either adjusted my drip or changed it for a new one.
I took the medication to get me "moving" at 6pm last night. My stomach had been quite tender and there hasn't much been happening down there due to all the drugs.
By 6am this morning I was in absolute agony, the meds had got things rumbling but Mount St Helens was still not about to blow. I phoned Shkoza and asked for some pain relief. By the time he returned I'd rushed to the toilet and thrown up from both ends simultaneously. (luckily the handbasin is adjacent to the toilet)
That's probably too much info for some of you, but it does give you some idea of how my day started. That was six hours ago and I'm only just starting to feel confident about moving around.
I saw the doctor this morning, nothing new. Bloods are good, but it's way too early to see any drop there anyway. The nadir (lowest point) for blood counts is usually around ten days post chemo. Still no bone marrow results.
There's another one of those catch 22's that's come to light with the bone marrow. If it's involved (ie: has been infiltrated by Hodgkins) then that's a very bad thing, and certainly my lower back ache around my pelvis where marrow is made and stored does nothing to ameliorate that fear. (I've been wanting to use that word for ages! Means reduce). If it is involved then I will need a third round of chemo to make sure it's taken care of. That means more cost and time etc.. not really a consideration, just an annoyance.
However If the cancer cells are expressing CD20 antigens, as some do, then we can use an antibody treatment called Rituximab. This drug is extremely good at fighting tumours and significantly improves the success rate. However I'd prefer it if I didn't have marrow involvement and we are just fighting three little nodes the size of scorched almonds in my mediastinum (chest cavity). Marrow involvement means systemic desease, best not think about it till tomorrow.
As soon as this drip is finished I'm going to go for that walk! See if I can't get lost in the Alps for an hour of three.
...Drips out!! yay!! I can move again. (well until I get the last 3 litres of saline this afternoon)
Later...
It started at 10:30 am Sunday when I had the second part of my chemo.
Although they give you all sorts of pain relief and anti-emetics to stop you throwing up, there is no escaping the fact that your quite ill. Not throwing up is just a small bonus. You still feel like it's the day after an all night bender and the room should be spinning.
I was too uncomfortable to write much in the afternoon, preferring the relative safety of my bed for the next 18 hours. Through out that time I had two IV drips continuously pumping more and more drugs into me. It's hard mentally to cope with that when you are feeling so unwell and just want it to stop. Every hour right through the night I was woken by Shkoza who either adjusted my drip or changed it for a new one.
I took the medication to get me "moving" at 6pm last night. My stomach had been quite tender and there hasn't much been happening down there due to all the drugs.
By 6am this morning I was in absolute agony, the meds had got things rumbling but Mount St Helens was still not about to blow. I phoned Shkoza and asked for some pain relief. By the time he returned I'd rushed to the toilet and thrown up from both ends simultaneously. (luckily the handbasin is adjacent to the toilet)
That's probably too much info for some of you, but it does give you some idea of how my day started. That was six hours ago and I'm only just starting to feel confident about moving around.
I saw the doctor this morning, nothing new. Bloods are good, but it's way too early to see any drop there anyway. The nadir (lowest point) for blood counts is usually around ten days post chemo. Still no bone marrow results.
There's another one of those catch 22's that's come to light with the bone marrow. If it's involved (ie: has been infiltrated by Hodgkins) then that's a very bad thing, and certainly my lower back ache around my pelvis where marrow is made and stored does nothing to ameliorate that fear. (I've been wanting to use that word for ages! Means reduce). If it is involved then I will need a third round of chemo to make sure it's taken care of. That means more cost and time etc.. not really a consideration, just an annoyance.
However If the cancer cells are expressing CD20 antigens, as some do, then we can use an antibody treatment called Rituximab. This drug is extremely good at fighting tumours and significantly improves the success rate. However I'd prefer it if I didn't have marrow involvement and we are just fighting three little nodes the size of scorched almonds in my mediastinum (chest cavity). Marrow involvement means systemic desease, best not think about it till tomorrow.
As soon as this drip is finished I'm going to go for that walk! See if I can't get lost in the Alps for an hour of three.
...Drips out!! yay!! I can move again. (well until I get the last 3 litres of saline this afternoon)
Later...
Day 7: Update
Well it's 8pm and The chemo continues. I'm just on saline right now, which is a pleasant change from the day's cocktail. However at around 10:30pm I'm back on the hard stuff for a few more hours.
I managed to get a few hours sleep this afternoon but as allways with afternoon naps I awoke feeling pretty crappy. As I sit here I can feel the nausea rising so I shall cut short the post and call it a night.
I'm doing OK really, just need to minimise my discomfort by laying down.
Night all, will update again in the morning.
I managed to get a few hours sleep this afternoon but as allways with afternoon naps I awoke feeling pretty crappy. As I sit here I can feel the nausea rising so I shall cut short the post and call it a night.
I'm doing OK really, just need to minimise my discomfort by laying down.
Night all, will update again in the morning.
Sunday, August 17, 2008
Day 7: Chemo continues.
I woke this morning feeling pretty good considering. It was another early rise, I just can't seem to sleep past 6am, My body clock is stuck there and won't budge.
I stayed in bed for the next two hours, my mind going over everything from blood counts to bone marrow, travel plans and work. Round and round. It's amazing I get any sleep at all.
I headed downstairs for breakfast. The only one there initially. A women came in and sat down at Eva's table. I said hello and she asked if I was the chap from Australia? I grumbled "Nooo New Zealand" I detected a Canadian accent and so asked if she was American. It made me feel better.
Pam is from Toronto and can only really be described as a health food evangelist. She interrupts, no hijacks, every conversation with irrelevant snippets of information about organics or wheat grass or the detrimental effects of microwaved food. All good information if it were not for the fact that we were talking about vastly different subjects before the hijackings.
Pam is in her late 40's medium height and build, with blonded light brown hair.
I particularly took note of her hair colour to see if she was in fact a natural blonde, after she related a story about buying a second hand hair dryer.
The story goes that she purchased one of those helmet style hair-dryers from salon that went bust. She took the unit home and decided to "repair" it with a tin of WD40 lubricant.
Her mother was the first person to use the newly "repaired" unit and duly plugged it in and sat under it. Before long copious volumes of smoke poured from the vents and she pulled her head out just as the unit burst into flames. I think Pam should stick to her organics.
I returned to my room post cornflakes and chatted to Sarah for a while online. Soon Biljana arrived and hooked me up for another day of liquid chemo treats. That was 10:30am, it's now 12:30 and I've only just got the energy to get out of bed and start this post. I was feeling quite queezy there for a while. I'm better now, we have turned down the flow rate on the Alexan.
Dr Kopic and Dr Glonti dropped in on their morning rounds and we had a good discussion on all aspects of my health, chemo and expected stay here. I've asked that he talk with Christine (Medical manager) and draw up a timeline so I can plan my stay and travel plans for both myself and Sarah. One thing that he did say was that if my bone marrow histology is clear and I have no involvement there, then I will have only two rounds of chemo in total. If I have bone marrow invlovement then I will need 3 in total. Here's hoping!
Dr Glonti is transfixed on the television as he has shown a propensity to do anytime I have an English speaking program on. I'm sure he's listening but it doesn't inspire my confidence when he prefers to watch the ads than discuss my need for a laxative.
Dr Kopic gives me 100% of his attention and has his back to the TV. (Luckily I'd wisely switched over from a German speaking Xena Princess Warrior before they arrived, otherwise I'd be talking to myself)
The Doctors want me to get out and walk around for a while in case I develop thrombosis. I'm sure I won't and anyway how does one get outside with these infernal lines hooked up to oneself? I'd look like a crazed stick-man puppet on an epileptic romp through the green fields of Bavaria.
Tripping over the IV stand as it was thrown first one way then the other as the lines are pulled through the makeshift pivot of my trouser buttons by my wildly swinging arms. No I shall stay inside and type away to myself.. I can do less harm if I keep the calisthenics confined to the turmoil in my head.
I've lost count of the drugs I'm taking, maybe ten or twelve?, not one of them is psychedelic in nature and none do anything but make you feel poisoned. You'd think they would give you at least one drug that made you cruise through all this in a state of narcotic induced nirvana.
Perhaps I should leave a note in the suggestion box..
OK drug count just went up by three. Biljana has some goodies to get me "moving". However I'm too scared to take them! How on earth am I expected to cope with what may well be an eruption on a scale not seen since Mount St Helens, when my wrists are tied to this trifford like apparatus!??
I think I'll go lay down for a while and contemplate my situation. She's cranked up the Alexan because it was going in too slow (which made me feel heaps better) but now it's too fast and the nausea has returned.
I'll start a new post later if I manage to get out of bed again today.
I stayed in bed for the next two hours, my mind going over everything from blood counts to bone marrow, travel plans and work. Round and round. It's amazing I get any sleep at all.
I headed downstairs for breakfast. The only one there initially. A women came in and sat down at Eva's table. I said hello and she asked if I was the chap from Australia? I grumbled "Nooo New Zealand" I detected a Canadian accent and so asked if she was American. It made me feel better.
Pam is from Toronto and can only really be described as a health food evangelist. She interrupts, no hijacks, every conversation with irrelevant snippets of information about organics or wheat grass or the detrimental effects of microwaved food. All good information if it were not for the fact that we were talking about vastly different subjects before the hijackings.
Pam is in her late 40's medium height and build, with blonded light brown hair.
I particularly took note of her hair colour to see if she was in fact a natural blonde, after she related a story about buying a second hand hair dryer.
The story goes that she purchased one of those helmet style hair-dryers from salon that went bust. She took the unit home and decided to "repair" it with a tin of WD40 lubricant.
Her mother was the first person to use the newly "repaired" unit and duly plugged it in and sat under it. Before long copious volumes of smoke poured from the vents and she pulled her head out just as the unit burst into flames. I think Pam should stick to her organics.
I returned to my room post cornflakes and chatted to Sarah for a while online. Soon Biljana arrived and hooked me up for another day of liquid chemo treats. That was 10:30am, it's now 12:30 and I've only just got the energy to get out of bed and start this post. I was feeling quite queezy there for a while. I'm better now, we have turned down the flow rate on the Alexan.
Dr Kopic and Dr Glonti dropped in on their morning rounds and we had a good discussion on all aspects of my health, chemo and expected stay here. I've asked that he talk with Christine (Medical manager) and draw up a timeline so I can plan my stay and travel plans for both myself and Sarah. One thing that he did say was that if my bone marrow histology is clear and I have no involvement there, then I will have only two rounds of chemo in total. If I have bone marrow invlovement then I will need 3 in total. Here's hoping!
Dr Glonti is transfixed on the television as he has shown a propensity to do anytime I have an English speaking program on. I'm sure he's listening but it doesn't inspire my confidence when he prefers to watch the ads than discuss my need for a laxative.
Dr Kopic gives me 100% of his attention and has his back to the TV. (Luckily I'd wisely switched over from a German speaking Xena Princess Warrior before they arrived, otherwise I'd be talking to myself)
The Doctors want me to get out and walk around for a while in case I develop thrombosis. I'm sure I won't and anyway how does one get outside with these infernal lines hooked up to oneself? I'd look like a crazed stick-man puppet on an epileptic romp through the green fields of Bavaria.
Tripping over the IV stand as it was thrown first one way then the other as the lines are pulled through the makeshift pivot of my trouser buttons by my wildly swinging arms. No I shall stay inside and type away to myself.. I can do less harm if I keep the calisthenics confined to the turmoil in my head.
I've lost count of the drugs I'm taking, maybe ten or twelve?, not one of them is psychedelic in nature and none do anything but make you feel poisoned. You'd think they would give you at least one drug that made you cruise through all this in a state of narcotic induced nirvana.
Perhaps I should leave a note in the suggestion box..
OK drug count just went up by three. Biljana has some goodies to get me "moving". However I'm too scared to take them! How on earth am I expected to cope with what may well be an eruption on a scale not seen since Mount St Helens, when my wrists are tied to this trifford like apparatus!??
I think I'll go lay down for a while and contemplate my situation. She's cranked up the Alexan because it was going in too slow (which made me feel heaps better) but now it's too fast and the nausea has returned.
I'll start a new post later if I manage to get out of bed again today.
Decisions..Learning German or staying sane?
It bothers me that I only speak one language, it bothers me more than I can't even speak the indigenous language of my own country, Maori. It says more about our inherent lingual arrogance that most of us, myself included, will probably never learn it.
Here in the clinic I am surrounded by everyday people who through choice or situation have taken the time and effort to learn not only the language of their estranged homeland, but that of their chosen new home, Germany. Then having settled here and found employment they have taken the time to learn our language because most of us English speaking people cannot be bothered to learn theirs. Instead we believe that the whole world should learn English and things would be so much easier. (for us).
So with that thought in mind I've spent most of the day searching the internet for resources on learning German. One thing that I am seeing over and over again is that just one word might have many meanings, and then there might be half a dozen words to describe the same thing depending on whether it is masculine, feminine or neutral. There are exceptions to every rule, and then there are exceptions to the exceptions. I'd started to think I was inferior and that somehow I lacked the intellect to see the structure of the language and therefore make progress.
Then I stumbled upon an article written in 1880 by the author Mark Twain on the subject of learning German. I have realised I am not alone. Below I have pasted just a small part of that article...
THE AWFUL GERMAN LANGUAGE.
One is sure to lose his temper early; and if he sticks to the subject, and will not be warned, it will at last either soften his brain or petrify it. Personal pronouns and adjectives are a fruitful nuisance in this language, and should have been left out. For instance, the same sound, SIE, means YOU, and it means SHE, and it means HER, and it means IT, and it means THEY, and it means THEM. Think of the ragged poverty of a language which has to make one word do the work of six -- and a poor little weak thing of only three letters at that. But mainly, think of the exasperation of never knowing which of these meanings the speaker is trying to convey. This explains why, whenever a person says SIE to me, I generally try to kill him, if a stranger.
In his parting shots at the German language Twain declares that an intelligent man should be able to learn English in 30 Days, French in 30 months and the basics of German in 30 years.
..I think I'll learn Maori, at least that way I can purge some of my cultural guilt.
PS: Six hours post Chemo and I'm feeling fine :)
The night nurse, Shkoza, performed a blood sugar test (it's a little high), and told me my urine PH was low. So I've had another IV to fix it. That took 30 minutes. (None of these tests have ever been performed on me when getting treatment in NZ!)
It's now 12:30am and I'm off to sleep.
Oh..BTW, Shkoza is replacing Marcus who is on holiday in Croatia for two weeks. Shkoza is a giant of a man who looks like he could be a wrestler if he wanted a career change. Like Marcus he is easy to talk to and very professional.
Here in the clinic I am surrounded by everyday people who through choice or situation have taken the time and effort to learn not only the language of their estranged homeland, but that of their chosen new home, Germany. Then having settled here and found employment they have taken the time to learn our language because most of us English speaking people cannot be bothered to learn theirs. Instead we believe that the whole world should learn English and things would be so much easier. (for us).
So with that thought in mind I've spent most of the day searching the internet for resources on learning German. One thing that I am seeing over and over again is that just one word might have many meanings, and then there might be half a dozen words to describe the same thing depending on whether it is masculine, feminine or neutral. There are exceptions to every rule, and then there are exceptions to the exceptions. I'd started to think I was inferior and that somehow I lacked the intellect to see the structure of the language and therefore make progress.
Then I stumbled upon an article written in 1880 by the author Mark Twain on the subject of learning German. I have realised I am not alone. Below I have pasted just a small part of that article...
THE AWFUL GERMAN LANGUAGE.
One is sure to lose his temper early; and if he sticks to the subject, and will not be warned, it will at last either soften his brain or petrify it. Personal pronouns and adjectives are a fruitful nuisance in this language, and should have been left out. For instance, the same sound, SIE, means YOU, and it means SHE, and it means HER, and it means IT, and it means THEY, and it means THEM. Think of the ragged poverty of a language which has to make one word do the work of six -- and a poor little weak thing of only three letters at that. But mainly, think of the exasperation of never knowing which of these meanings the speaker is trying to convey. This explains why, whenever a person says SIE to me, I generally try to kill him, if a stranger.
In his parting shots at the German language Twain declares that an intelligent man should be able to learn English in 30 Days, French in 30 months and the basics of German in 30 years.
..I think I'll learn Maori, at least that way I can purge some of my cultural guilt.
PS: Six hours post Chemo and I'm feeling fine :)
The night nurse, Shkoza, performed a blood sugar test (it's a little high), and told me my urine PH was low. So I've had another IV to fix it. That took 30 minutes. (None of these tests have ever been performed on me when getting treatment in NZ!)
It's now 12:30am and I'm off to sleep.
Oh..BTW, Shkoza is replacing Marcus who is on holiday in Croatia for two weeks. Shkoza is a giant of a man who looks like he could be a wrestler if he wanted a career change. Like Marcus he is easy to talk to and very professional.
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