I'm in a total funk right now.. it's the steroids again. Can't think, can't stay still, can't watch a movie, can't read a book, can't relax. It's awful!
I've been hooked up these IV's since friday lunchtime and am due to unhook at 7am monday morning.It's like a prison sentence!
The nurse has decided that my weight is too high, so I must be retaining some of the fluids. So she has given me another injection of a drug that makes you pass water.. and heaps of it. I'm emptying my bladder every ten minutes.. another pain in the neck as I have to drag this IV stand when I go to the bathroom.
Roll on tomorrow and I can go home!
Sunday, January 11, 2009
Saturday, January 10, 2009
One hours sleep and a bag of vomit
I've broken my unblemished record. Despite all the chemo I've had in the last three years I've never thrown up.
However this morning my meds came late and although I was feeling queezy at around 7am I figured I could hold out till 8am when they were due. Unfortunately it was almost 9am before they came and not five minutes after taking them I started coughing and next thing ya know I've got squirrel cheek's and I'm desperately looking for a convenient place to convulse into. Luckily I spotted the small brown paper bag they give us for rubbish just in time!
I started my IV's sometime around 1pm yesterday and was under the impression that my last 4 hour drip would start around 9pm. I stayed up and waited expecting that I could sleep without having the IV line hanging off me. However late in the night I was informed by the nurse that I had a ten hour saline drip after that. By the look of it I'll be permanently connected right through till monday morning with perhaps a daily five minute break to shower and change clothes.
The little bit of sleep I did mange to get was constantly broken by a cacophony of beeps, buzzers, coughs, snores and door slamming. It was not until this morning when I was offered some ear plugs by one of the nurses that I actually got to nod off.
The IV's here use electronic pumps and they are so darn finicky. They keep getting air in the tubes and that stops the pump and sets off an alarm. I'm supposed to then press the nurses alarm but they never come. Last night I gave myself a crash course on driving the things and managed to clear the air lock by finding the purge option from the menu and then resetting the alarm and get the pump flowing again. This morning it happened again, so I reset it... five times it started and then stopped. Finally I gave up and pushed the nurses alarm. Twenty minutes passed and still no one came (unlike the seven seconds they took in Germany!) so I decided to open the front of the machine and see how the tube wound it's way through the pump and maybe locate the fault there. Big mistake.. there's a process for getting the door to shut again and It's not at all obvious. I was unable to close it before the nurse came.
Phyllis the nurse is about as butch as a gal can get without actually having a sex change. Short cropped, blonded hair and arms heavily covered with tattoos that would do your average trucker proud.
She growled at me and said to leave it alone and to call the nurse in future.. lesson learnt.. you have to stretch the tube and pull it tightly into the slot in order to re-prime the pump and close the door. (I'll remember that for next time!)
However this morning my meds came late and although I was feeling queezy at around 7am I figured I could hold out till 8am when they were due. Unfortunately it was almost 9am before they came and not five minutes after taking them I started coughing and next thing ya know I've got squirrel cheek's and I'm desperately looking for a convenient place to convulse into. Luckily I spotted the small brown paper bag they give us for rubbish just in time!
I started my IV's sometime around 1pm yesterday and was under the impression that my last 4 hour drip would start around 9pm. I stayed up and waited expecting that I could sleep without having the IV line hanging off me. However late in the night I was informed by the nurse that I had a ten hour saline drip after that. By the look of it I'll be permanently connected right through till monday morning with perhaps a daily five minute break to shower and change clothes.
The little bit of sleep I did mange to get was constantly broken by a cacophony of beeps, buzzers, coughs, snores and door slamming. It was not until this morning when I was offered some ear plugs by one of the nurses that I actually got to nod off.
The IV's here use electronic pumps and they are so darn finicky. They keep getting air in the tubes and that stops the pump and sets off an alarm. I'm supposed to then press the nurses alarm but they never come. Last night I gave myself a crash course on driving the things and managed to clear the air lock by finding the purge option from the menu and then resetting the alarm and get the pump flowing again. This morning it happened again, so I reset it... five times it started and then stopped. Finally I gave up and pushed the nurses alarm. Twenty minutes passed and still no one came (unlike the seven seconds they took in Germany!) so I decided to open the front of the machine and see how the tube wound it's way through the pump and maybe locate the fault there. Big mistake.. there's a process for getting the door to shut again and It's not at all obvious. I was unable to close it before the nurse came.
Phyllis the nurse is about as butch as a gal can get without actually having a sex change. Short cropped, blonded hair and arms heavily covered with tattoos that would do your average trucker proud.
She growled at me and said to leave it alone and to call the nurse in future.. lesson learnt.. you have to stretch the tube and pull it tightly into the slot in order to re-prime the pump and close the door. (I'll remember that for next time!)
Friday, January 9, 2009
Wellington Hospital: A great weekend getaway!
I guess I can't complain too much, It's been nearly three and a half months since I last had a needle poked into these chemo-shy veins.
There were no surprises when the young female Asian doctor couldn't find a vein, and even less surprise from me when she resorted to finally placing the cannula in the back of my hand. Some things never change.
Sooo it's back to the surreal world of chemo drugs, IV's, hospital food and boredom.
Only this time I have the added bonus of sharing my world with three other people.
I haven't had a chance to talk with any of them yet.. maybe tomorrow.
All I know is one of them is called Mr King and in the bed beside him is Mr Kong.
The other man's name escapes me. (I stopped listening after the first two names were relayed by the nurse just in case her brand of insanity was spread by aural exposure)
The foods OK, no real surprises yet. Lunch was those fake cheese sizzlers, but minus the cheese, and cut up into chunks and coated in a tomato and onion sauce. Dinner was beef stroganoff, ice-cream and jelly.
I'm guessing Mr Kong had the sans-cheese sizzlers with the onions for lunch as he has so far today managed to pass wind at what I can only describe as being of an Olympic standard. He has punctuated the air all afternoon with five second blasts of wind and noise that would put a klaxxon to shame. Sometimes he even did it mid sentence while talking to the doctors. I wonder what the medical term is for a man that talk out of both ends at once?
My doctor gave me some info sheets on the chemo drugs that they are administering.
Usually I would look up the drugs on the internet and study up on all the side effects etc. Perhaps I'll do it later because the info the hospital gives is exactly the same for all three drugs!. Hair loss, mouth ulcers,nausea, low blood counts.
However one of the drugs, Ifosfamide, has a really odd side effect.
The fact sheet states that although sperm production generally decreases with chemotherapy, some men may actually become more fertile after treatment than before! How the heck does that work? Do the little guys get really pissed off by having their
ranks wiped out and go on a recruiting drive ? Bizarre.
Another of the drugs side effects is hallucinations. The fact sheet advises that if you have any you should advise the doctor immediately. Thing is.. how would you know if you'd actually had a real hallucination? what if you just thought you had one? and what if you hallucinated that you told the doctor? and would a doctor with blue skin and eight legs know what to do in such a situation? Maybe I'll just keep them to myself for now.
There were no surprises when the young female Asian doctor couldn't find a vein, and even less surprise from me when she resorted to finally placing the cannula in the back of my hand. Some things never change.
Sooo it's back to the surreal world of chemo drugs, IV's, hospital food and boredom.
Only this time I have the added bonus of sharing my world with three other people.
I haven't had a chance to talk with any of them yet.. maybe tomorrow.
All I know is one of them is called Mr King and in the bed beside him is Mr Kong.
The other man's name escapes me. (I stopped listening after the first two names were relayed by the nurse just in case her brand of insanity was spread by aural exposure)
The foods OK, no real surprises yet. Lunch was those fake cheese sizzlers, but minus the cheese, and cut up into chunks and coated in a tomato and onion sauce. Dinner was beef stroganoff, ice-cream and jelly.
I'm guessing Mr Kong had the sans-cheese sizzlers with the onions for lunch as he has so far today managed to pass wind at what I can only describe as being of an Olympic standard. He has punctuated the air all afternoon with five second blasts of wind and noise that would put a klaxxon to shame. Sometimes he even did it mid sentence while talking to the doctors. I wonder what the medical term is for a man that talk out of both ends at once?
My doctor gave me some info sheets on the chemo drugs that they are administering.
Usually I would look up the drugs on the internet and study up on all the side effects etc. Perhaps I'll do it later because the info the hospital gives is exactly the same for all three drugs!. Hair loss, mouth ulcers,nausea, low blood counts.
However one of the drugs, Ifosfamide, has a really odd side effect.
The fact sheet states that although sperm production generally decreases with chemotherapy, some men may actually become more fertile after treatment than before! How the heck does that work? Do the little guys get really pissed off by having their
ranks wiped out and go on a recruiting drive ? Bizarre.
Another of the drugs side effects is hallucinations. The fact sheet advises that if you have any you should advise the doctor immediately. Thing is.. how would you know if you'd actually had a real hallucination? what if you just thought you had one? and what if you hallucinated that you told the doctor? and would a doctor with blue skin and eight legs know what to do in such a situation? Maybe I'll just keep them to myself for now.
Sunday, December 21, 2008
Almost normal..
This is what I figured remission would be like. No symptoms of my disease at all. No back-aches, no night sweats, no feeling unwell.
If I felt like this before going to Germany I probably would not have gone. However I have a PET scan that says I'm not in remission.
Just some sort of low in my lymphomas activity.
I've been back on full duties at work. It's been over a year since I last picked up my tools and worked a full-on day. Last week I was flat out doing all sorts of engineering work without the slightest bit of fatigue. ..and yet I'm just over two weeks away from having salvage chemo. It just seems so bizarre to be facing such an intense period of treatment when I feel this good.
My dry, choking cough is now a permanent feature and I cannot talk without punctuating every sentence with a cough or two. It still drives me nuts!
My stem cells arrived back in NZ late on Friday night. The staff at the cryopreservation lab at Wellington hospital would not have been happy as the shipment finally arrived at 8:40pm according to the delivery report. They will be tested to see if they have degraded in any way. I have been waiting for the stem cells to arrive back home before posting here that I discovered that the documentation from Germany had been filled out retrospectively and therefore was very suspect. I informed the team handling my transplant as soon as I saw the falsified documents. They have said they will dispose of my stem cells if there is any doubt as to their viability. (Why is it that at almost every point in my treatment there have been these sorts of dramas!! ??)
I have a busy few days at work next week before I take a break for Christmas. Kurt left for his holidays on Friday last week and will take over running the workshop until I return at the end of my treatment. I might be OK to do some light duties, I may not, Who knows. Same goes for my motorsport.. I will miss the opening two rounds of the 2009 Duncan McKenzie series, Port rd and Mount Victoria hillclimb.
I have dreams of jumping in my car and doing one single run at each event, possibly before collapsing in fatigued heap. I'd need to have safe blood counts before I could even entertain the thought of entering.. I probably need to face facts.. I won't be racing for 3-4 months, But I never say never!
I'll next post once I'm in hospital from Jan 9th. I'll be there for 4-5 days.
Meanwhile..I hope everyone has a great Christmas and a relaxing holiday break!
If I felt like this before going to Germany I probably would not have gone. However I have a PET scan that says I'm not in remission.
Just some sort of low in my lymphomas activity.
I've been back on full duties at work. It's been over a year since I last picked up my tools and worked a full-on day. Last week I was flat out doing all sorts of engineering work without the slightest bit of fatigue. ..and yet I'm just over two weeks away from having salvage chemo. It just seems so bizarre to be facing such an intense period of treatment when I feel this good.
My dry, choking cough is now a permanent feature and I cannot talk without punctuating every sentence with a cough or two. It still drives me nuts!
My stem cells arrived back in NZ late on Friday night. The staff at the cryopreservation lab at Wellington hospital would not have been happy as the shipment finally arrived at 8:40pm according to the delivery report. They will be tested to see if they have degraded in any way. I have been waiting for the stem cells to arrive back home before posting here that I discovered that the documentation from Germany had been filled out retrospectively and therefore was very suspect. I informed the team handling my transplant as soon as I saw the falsified documents. They have said they will dispose of my stem cells if there is any doubt as to their viability. (Why is it that at almost every point in my treatment there have been these sorts of dramas!! ??)
I have a busy few days at work next week before I take a break for Christmas. Kurt left for his holidays on Friday last week and will take over running the workshop until I return at the end of my treatment. I might be OK to do some light duties, I may not, Who knows. Same goes for my motorsport.. I will miss the opening two rounds of the 2009 Duncan McKenzie series, Port rd and Mount Victoria hillclimb.
I have dreams of jumping in my car and doing one single run at each event, possibly before collapsing in fatigued heap. I'd need to have safe blood counts before I could even entertain the thought of entering.. I probably need to face facts.. I won't be racing for 3-4 months, But I never say never!
I'll next post once I'm in hospital from Jan 9th. I'll be there for 4-5 days.
Meanwhile..I hope everyone has a great Christmas and a relaxing holiday break!
Wednesday, December 10, 2008
The plan...
I had a meeting with Dr D'Souza this morning. It started in the middle of the car park, where we had bumped into each other, continued through the underground car-park into the lifts and down the corridors. It was he who instigated the conversation, most Doctors don't like to talk to patients outside of their allotted time-slot.. That little fifteen minute time-slice that you often have to wait two to six weeks to obtain. So I didn't feel bad for talking out of class.
Once seated in one of the rooms he laid out the treatment plan.
Jan 8th I go into hospital and receive one cycle of IFE salvage chemotherapy. The salvage chemo will reduce the cancer burden in preparation for the high dose chemo with stem cell rescue that will follow about 3-4 weeks later. It will also increase the chances of getting a good stem cell harvest. We start mobilisation shortly after the chemo. Mobilisation refers to stimulating the growth of stem cells in preparation for harvesting. This involves being injected with large doses of GCSF growth factor. Basically the same growth factor I was given to stimulate my white blood counts in Germany but in much higher doses.
I was surprised to find out that I won't be stuck in a hospital bed for the entire time. There are several short stays, but most of the time I can stay at home and be driven (or drive myself, but don't tell them I said that!)into the hospital every day for tests etc. The exact dates have yet to be confirmed, I'll be getting an email in a few days with the full treatment schedule.
I've booked the couriers to pick up my stem cells from Germany. They should arrive back mid next week. I've conveyed to Dr D'Souza my doubts over the viability of the old stem cells and he said that they will be tested on their arrival and if they are not up to spec they will be disposed of. Hopefully we get a really good harvest this time and we won't need to use them anyway.
Health-wise I'm still in good chape. I was having the occasional single bottle of beer after work on these warm summer evenings but I started to get a slight back-ache so have now decided to do without. My cough seems to be worse, it drives me nuts. No night sweats in ages.
Once seated in one of the rooms he laid out the treatment plan.
Jan 8th I go into hospital and receive one cycle of IFE salvage chemotherapy. The salvage chemo will reduce the cancer burden in preparation for the high dose chemo with stem cell rescue that will follow about 3-4 weeks later. It will also increase the chances of getting a good stem cell harvest. We start mobilisation shortly after the chemo. Mobilisation refers to stimulating the growth of stem cells in preparation for harvesting. This involves being injected with large doses of GCSF growth factor. Basically the same growth factor I was given to stimulate my white blood counts in Germany but in much higher doses.
I was surprised to find out that I won't be stuck in a hospital bed for the entire time. There are several short stays, but most of the time I can stay at home and be driven (or drive myself, but don't tell them I said that!)into the hospital every day for tests etc. The exact dates have yet to be confirmed, I'll be getting an email in a few days with the full treatment schedule.
I've booked the couriers to pick up my stem cells from Germany. They should arrive back mid next week. I've conveyed to Dr D'Souza my doubts over the viability of the old stem cells and he said that they will be tested on their arrival and if they are not up to spec they will be disposed of. Hopefully we get a really good harvest this time and we won't need to use them anyway.
Health-wise I'm still in good chape. I was having the occasional single bottle of beer after work on these warm summer evenings but I started to get a slight back-ache so have now decided to do without. My cough seems to be worse, it drives me nuts. No night sweats in ages.
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