Thursday 26th January 2012, midday
Crystal Palace, London
Chemotherapy, 1st week completed.
The tide has changed...
Last week was my first week of Chemo.
The side effects were bearable, more so now I have a plan of how to deal with them. But definitely NOT FUN.
I 'HAD' two tumors, one the size of half a quail egg in my left Lymph Gland, and one twice that size in my right Parotid Gland ( saliva ).
"The small tumor has gone".
"The large tumor has shrunk".
The smaller tumor had actually disappeared so as to be undetectable by touch after only three days of Chemo. The larger of the two has over the following week shrunk to half the size it was.
Was it worth it ?...
"HELL YES !"
Edited with thanks to Jo W
Thursday, January 26, 2012
22. Chemotherapy, part 5
Tuesday 17th January 2012
Chemotherapy, 1st week.
The Hiccups from HELL...
Day one in the Dimbleby Unit on Cisplatin, I experienced no side effects at all. I'm back home now on '5FU', on the portable pump and taking a regime of additional medication to counter the likely and the possible side effects of the Chemo... nausea and all the goes with it, being by far the worst and most likely.
Aprepitant 80mg, for 2 days
Ondansetron 8mg, for 2 days ( anti sickness )
Dexamethasone 4x 2mg, for 6 days ( steroid, for anti sickness, energy and appetite )
Metoclopramide 2x 10mg, for 6 days ( anti sickness )
On day two ( Tuesday ) no real noticeable side effects.
Day three the hiccups start, which sound funny, but really, really aren't...
Imagine the worst, most violent, hiccup you have ever experienced, now multiply that by x10. A hiccup so violent that you're convinced that you're going to 'snap your spine' or 'split your throat'. Follow that with half a dozen 'after-spasms' that 'bounce' your diaphragm like a cannonball dropped on a drum, and continue for an hour, to an hour and a half, then take half an hour, to 45 minutes to subside. Then calm for and hour or so. Then start all over again. 24 hours a day, for 3 days in a row.
For three days I didn't sleep for more than an hour at a time. I would end up pacing the flat for a couple of hours ( all night on and off ) before managing to get another hour or so of "sleep". After a day of that I managed to sleep for a few hours mid day-ish. Now for the next 5 days my body clock is upside down and I'm not sleeping for more than an hour, just 3 or 4 times in every 24 hours.
Also I'm experiencing a few of the other fun filled side effects from all the medication...
I'm constantly tired & fatigued due to the hiccups and lack of sleep and feel weak like post hangover or having the flu, but I'm also incredibly restless and 'twitchy", great combo, tired and restless.
I become hyper sensitive to certain volumes and frequencies of sounds. The crunch of a boiled sweet from the other side of the room sounds like a huge bundle of dried twigs being snapped inside my head, while my head is inside an oil drum.
I'm irritable ( much, much more than usual ).
I can't concentrate.
My palate & mouth lining has changed. Some flavors I just can't taste anymore, and my inner cheeks and tongue sides are 'puckered and sensitive'.
'Atomic' heart burn.
My throat and stomach have become 'hypersensitive'. Everything has to be masticated to pulp, and still when I swallow the effect on my gut is like having a bucket of hot bricks dropped down a well.
All this lasts "full on" for 3 or 4 days, then day by day eases off. I get some sleeping pills from my G.P. and I've now slept properly for 3 nights in a row. Taste is slowly returning to my mouth, but my tongue is lined with ulcers running it's entire length and both sides.
Jo tells me she read a blog from chap in similar situation to me who decided to skip the anti sickness medication after his first session in favor of the nausea etc, apparently after the second session he deeply regretted it.
Is it worth it ?...
Edited with thanks to Jo W
Chemotherapy, 1st week.
The Hiccups from HELL...
Day one in the Dimbleby Unit on Cisplatin, I experienced no side effects at all. I'm back home now on '5FU', on the portable pump and taking a regime of additional medication to counter the likely and the possible side effects of the Chemo... nausea and all the goes with it, being by far the worst and most likely.
Aprepitant 80mg, for 2 days
Ondansetron 8mg, for 2 days ( anti sickness )
Dexamethasone 4x 2mg, for 6 days ( steroid, for anti sickness, energy and appetite )
Metoclopramide 2x 10mg, for 6 days ( anti sickness )
On day two ( Tuesday ) no real noticeable side effects.
Day three the hiccups start, which sound funny, but really, really aren't...
Imagine the worst, most violent, hiccup you have ever experienced, now multiply that by x10. A hiccup so violent that you're convinced that you're going to 'snap your spine' or 'split your throat'. Follow that with half a dozen 'after-spasms' that 'bounce' your diaphragm like a cannonball dropped on a drum, and continue for an hour, to an hour and a half, then take half an hour, to 45 minutes to subside. Then calm for and hour or so. Then start all over again. 24 hours a day, for 3 days in a row.
For three days I didn't sleep for more than an hour at a time. I would end up pacing the flat for a couple of hours ( all night on and off ) before managing to get another hour or so of "sleep". After a day of that I managed to sleep for a few hours mid day-ish. Now for the next 5 days my body clock is upside down and I'm not sleeping for more than an hour, just 3 or 4 times in every 24 hours.
Also I'm experiencing a few of the other fun filled side effects from all the medication...
I'm constantly tired & fatigued due to the hiccups and lack of sleep and feel weak like post hangover or having the flu, but I'm also incredibly restless and 'twitchy", great combo, tired and restless.
I become hyper sensitive to certain volumes and frequencies of sounds. The crunch of a boiled sweet from the other side of the room sounds like a huge bundle of dried twigs being snapped inside my head, while my head is inside an oil drum.
I'm irritable ( much, much more than usual ).
I can't concentrate.
My palate & mouth lining has changed. Some flavors I just can't taste anymore, and my inner cheeks and tongue sides are 'puckered and sensitive'.
'Atomic' heart burn.
My throat and stomach have become 'hypersensitive'. Everything has to be masticated to pulp, and still when I swallow the effect on my gut is like having a bucket of hot bricks dropped down a well.
All this lasts "full on" for 3 or 4 days, then day by day eases off. I get some sleeping pills from my G.P. and I've now slept properly for 3 nights in a row. Taste is slowly returning to my mouth, but my tongue is lined with ulcers running it's entire length and both sides.
Jo tells me she read a blog from chap in similar situation to me who decided to skip the anti sickness medication after his first session in favor of the nausea etc, apparently after the second session he deeply regretted it.
Is it worth it ?...
Edited with thanks to Jo W
21. Chemotherapy, part 4
Monday 16th January 2012, 10:00 AM
Dimbleby Cancer Care Unit, Guy's Hospital, London
Chemotherapy, day one.
It begins...
Monday, 10:00 AM start. Jo and I arrive 15 minutes early and are sent to suit 'C' ( Presidential ) "bang!" on 10:00 AM. We settle in and within a couple of minutes we meet S.S.N. Tracy Hammerstein and it starts. She de-rigs my PICC Line from its post-opp configuration gives that are of my arm a thorough sterile clean up and hooks me up to my first hour of hydration via an I.V. drip.
As kidney function is a crucial factor in Chemo I'm required to measure my urine production, Nurse Tracy warns me that i'll be up and down all day, Jo decides to amuse her self by keeping track. My first half jug full of pee is enough to reassure Tracy that we can go a head with the chemo and no more measuring would be necessary. By the time we were to leave ( 5 hours later ) I had gone for a pee 10 times, Jo decided to stop counting. Jo said she didn't mind me peeing like a race horse but did I really need to smell like one too, I said why not, after all I'm hung like one ( 'boom-boom' LOL ). She just stood there with a blank expression on her face.
When the I.V. bags are near empty an alarm sounds from the pump, just a small "beep-beep-beep..." like a little truck backing up, and the nurse come and changers to the next bag. For me that was 1 hour Hydration via saline solution, 2 hours Chemo ( Cisplatin ), 2 hours of rehydration.
The unit is divided up into half a dozen open plan suites, each with 4 large, gray, fully adjustable, reclining 'Lazy-Boy style' arm chairs, and guest chairs and adjustable tables. There is an internet cafe and tea and coffee making facilities. A couple of times a trolly and attendant do the rounds also offering drinks and fruit biscuits and sandwiches. Its all very calm relaxing and civilized.
Monday is "Head & Neck Day" at the Dimbleby Unit. Head & Neck patients are a pretty rowdy bunch and are considered to be the "Royal Marine Commandoes" of cancer patients, I won't don't disappoint them...
At the end of the session I'm detached from the Chemo I.V. Robot and plugged into my portable Chemo Pump. Now I had looked for these on the W.W.W. and had found pics of "Portable ( 24-7, home use ) Chemo pumps" which were a traveling version of the upright Chemo IV Robot that I had spent the day on that makes a continues, gentle "putt-putt-putt..." sound as it operates. I was wrong, 'again'.
The portable pump is "ingenious". Small, about the size of a half pint glass. Silent. Light. And has "NO" moving parts. It's, a Barometric or pressure differential pump. A soft bladder of liquid ( my medicine, Fluorouracil '5FU' ) is held in an acrylic bottle. The bottle is "evacuated" causing the bladder to expand. When the valve is set to 'open' the air pressure entering the bottle squeezes the bladder metering out a constant flow of treatment that lasts for 4 days. Brilliant !
The full Flask weighed less than half a pint, it comes in it's own bag & strap and I wore mine like either a St Bernard or like a sporran depending on circumstance.
Two weeks rest until Chemo session two.
Edited with thanks to Jo W
Dimbleby Cancer Care Unit, Guy's Hospital, London
Chemotherapy, day one.
It begins...
Monday, 10:00 AM start. Jo and I arrive 15 minutes early and are sent to suit 'C' ( Presidential ) "bang!" on 10:00 AM. We settle in and within a couple of minutes we meet S.S.N. Tracy Hammerstein and it starts. She de-rigs my PICC Line from its post-opp configuration gives that are of my arm a thorough sterile clean up and hooks me up to my first hour of hydration via an I.V. drip.
As kidney function is a crucial factor in Chemo I'm required to measure my urine production, Nurse Tracy warns me that i'll be up and down all day, Jo decides to amuse her self by keeping track. My first half jug full of pee is enough to reassure Tracy that we can go a head with the chemo and no more measuring would be necessary. By the time we were to leave ( 5 hours later ) I had gone for a pee 10 times, Jo decided to stop counting. Jo said she didn't mind me peeing like a race horse but did I really need to smell like one too, I said why not, after all I'm hung like one ( 'boom-boom' LOL ). She just stood there with a blank expression on her face.
When the I.V. bags are near empty an alarm sounds from the pump, just a small "beep-beep-beep..." like a little truck backing up, and the nurse come and changers to the next bag. For me that was 1 hour Hydration via saline solution, 2 hours Chemo ( Cisplatin ), 2 hours of rehydration.
The unit is divided up into half a dozen open plan suites, each with 4 large, gray, fully adjustable, reclining 'Lazy-Boy style' arm chairs, and guest chairs and adjustable tables. There is an internet cafe and tea and coffee making facilities. A couple of times a trolly and attendant do the rounds also offering drinks and fruit biscuits and sandwiches. Its all very calm relaxing and civilized.
 |
| I.V. Robo-Pump (left) Me! ( centre) Jo's portable midden (right) |
Monday is "Head & Neck Day" at the Dimbleby Unit. Head & Neck patients are a pretty rowdy bunch and are considered to be the "Royal Marine Commandoes" of cancer patients, I won't don't disappoint them...
At the end of the session I'm detached from the Chemo I.V. Robot and plugged into my portable Chemo Pump. Now I had looked for these on the W.W.W. and had found pics of "Portable ( 24-7, home use ) Chemo pumps" which were a traveling version of the upright Chemo IV Robot that I had spent the day on that makes a continues, gentle "putt-putt-putt..." sound as it operates. I was wrong, 'again'.
 |
| I.V. Robot |
The portable pump is "ingenious". Small, about the size of a half pint glass. Silent. Light. And has "NO" moving parts. It's, a Barometric or pressure differential pump. A soft bladder of liquid ( my medicine, Fluorouracil '5FU' ) is held in an acrylic bottle. The bottle is "evacuated" causing the bladder to expand. When the valve is set to 'open' the air pressure entering the bottle squeezes the bladder metering out a constant flow of treatment that lasts for 4 days. Brilliant !
 |
| "Pumpie" |
The full Flask weighed less than half a pint, it comes in it's own bag & strap and I wore mine like either a St Bernard or like a sporran depending on circumstance.
I won't be back to the unit until I'm due for a blood test in about a weeks time so I'm given a goodie bag of bits and pieces for the District Nurse to use when she comes to detach "pumpie", a used Tesco bag, "I-kid-you-not".
 |
| PICC Line Home Service Kit |
Two weeks rest until Chemo session two.
Edited with thanks to Jo W
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