hair today...

Before this round of chemo began, I had my hair cut. Very short. As short as possible with a pair of hairdresser's clippers. It's now a bit longer, a centimetre or so.

It is, however, a bit patchy. Deb says so, she says it looks embarrassing, I may need to wear a hat. I can't see it myself. Okay, I can see my hair in a mirror but I don't often notice it.

Tonight I rub my scalp -- and shed more hair than the cat. A side-effect -- other than tiredness -- at last... I am losing my hair. Hair today, gone tomorrow :-)

Forget the hat -- there will soon be nothing to hide.

===

Friday: It's a full day of minding the grandson, with a swimming lesson in the middle. I'm tired, I let Deb head off by herself. At home, I sleep, snack, snooze, read (which is like snoozing for me) and snooze some more. Then I join Deb and grandson at the swimming pool.

I'm still tired. After the lesson I "let" Deb do the splashing in the pool for an hour. Then we spend the afternoon at home. I do some low level grandson entertainment but Deb does most. As usual. At least I'm awake, mostly :-)

Time to deliver the toddler to his own home... and I let Deb take him, while I stay at home. This is not just me being tired.

I escaped this week's IV because my white cell count was so low. This means that I had no white blood cells to fight diseases. And the grandson has a runny nose.

Has my white cell level recovered? Is there any way to tell? Deb says, No, not without a blood test. So I don't want to travel in a car with a snotty boy... Silly choice? I don't know. I do enjoy those trips with Deb & the boy. I'm sorry I missed this one. I'm still glad that I did.

===

Late that night I wake up for the usual reason, to go to the toilet. I walk from the bed to the bathroom, just outside the toilet door. I'm half asleep... it's a learnt knack: if I don't fully wake up, it will be easy to get back to sleep.

Someone else is in the toilet. It's dark, but I can … hear sounds. My analytical mind is working. It must be Deb, I think. I should say something, I think.

What I am not able to do... is say something. I can think the thoughts. I just can't wake my mind enough to voice the words. I go back to the bed and wait, till Deb comes back to bed.

Lesson learnt: I like to pat Deb when I return to bed. In future I will pat Deb as I am getting out of bed. Just to be sure that she is actually in bed. It's either that, or wake up enough to be able to say, Is that you ?

===

Another dream: Deb is outside the bedroom, she leans in and says, It's Mum...

What does she mean? *Who* does she mean?

When I was growing up, we (brothers, sister, me) called our parents Sophie and Slicer. Because that was their names. Well, okay, I was an adult before I realised that Slicer is an unusual name. Though I already knew that it was nickname from his childhood.

When we had our own children, my parents became Granma Sophie and Grandad Slicer to the grandchildren. All very simple. Deb's parents were Nanna and Granpop. Or Mum and Dad to Deb. Deb was either Deb or Mum, I was Nick or Dad. A little less simple.

We have two sons. They are married, we now also have two daughters. I'm a Jane Austen fan, I think of our sons' wives as being, now, our daughters. To our daughters we are Deb and Nick though I sign emails as Dad because I may be emailing both sons and daughters.

Now I am Grandad, Deb is Nanna... or Dad and Mum... or Nick and Deb... depending on who we are talking to. To keep it simple I refer to Deb's Mum as Nanna-one. (Nanna? or Nana? I forget.) And when speaking to our grandson we refer to his parents, our son and daughter, as Dad and Mum.

When Deb leans in the door and says, It's Mum... who does she mean? In the dream it's obvious, she means, Deb. Though even in the dream I find that that is confusing: Deb saying, It's Mum, when she means herself.

Anyway, there is a hint in what Deb says -- a hint of dream understanding -- which implies that whatever Deb means, Mum/Deb needs me for something.

I instantly wake up and sit up in bed.

Deb has that effect on me. If she needs me, I hope that I will be there.

===

btw: I have a simple means of dealing with all the confusion of names within the family. I have never been able to remember people's names. With two sons I sometimes get confused.

I just avoid using names. Simple.

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

"Leaders are visionaries with a poorly developed sense of fear and no concept of the odds against them." … Robert Jarvik

===

Dying for you to read my blog, at https://notdotdeaddotyet.blogspot.com.au/ :-)

now that feels better :-)

This morning I wake up damp and sweaty. As I have for the last couple of weeks. Hang my pyjamas up to dry... no use washing them, it would be every day, several times a day. Just dry them and air them before wearing them again tonight.

Deb goes to work. I shiver over breakfast. Then spend the morning fixing the house... By which I mean, contacting tradesmen. It'll be electricians this afternoon.

Almost noon and I suddenly realise several things:

I am cool -- not shivering. It is lunchtime, I am hungry -- and actually looking forward to eating lunch. I have just finished my second cup of tea -- and enjoyed it. I have been standing at the PC for hours -- without collapsing into a chair.

Fever & chills ? Gone !

I quickly load the washing machine with a pile of worn and sweaty clothes. My "recycling" policy means that there is just one load. Wash, hang on the line.

I eat a solid lunch -- and enjoy it. Eat a piece of chocolate and -- for the first time in weeks -- really enjoy it. (Sorry Deb.)

I spend the afternoon doing this and that, things which are almost essential. Feeling comfortable, neither too hot nor too cold. Body temperature regulation is working again. Aaaahhh… Now that feels better :-)

I've been through this before, many times, pre-cancer. Deb may not accept "run down" but I can't think of any better description. Run down -- this time -- due to the effort of fighting cancer treatment. Perhaps.

Eventually the run down symptoms fade. I just forget how quickly they fade. And how much better I feel once I am no longer, "run down".

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

"Leaders are visionaries with a poorly developed sense of fear and no concept of the odds against them." … Robert Jarvik

===

Dying for you to read my blog, at https://notdotdeaddotyet.blogspot.com.au/ :-)

compromised whatevers

monday, an interesting day...

oh, yes: i'm still typing all lower case. no, it's no longer a sign that i am in hospital. i can stand up at the pc, use a proper keyboard, easily use upper and lower case. or i can slouch on a sofa, tap one fingered on the tablet, forget about the up and down shift key. forget about spell check, too.

the tablet is easier but slower. i choose easier.

===

there's an interesting article in the paper. it seems that a course of antibiotics can damage your gut bacteria. fair enough, gut bacteria are biota  which an anti-biotic will be anti.

it seems though -- from today's article -- that the gut may never fully recover. one course of antibiotics and your gut will be different, for ever and a day.

i know that my ed visits involved antibiotics. i would guess that they were strong. perhaps that is why my digestion is now working well but differently. there is output but the quality is... different. no, i think i'll leave it there.

but here's another thought:

some authoritative tv shows have said that swallowing a poo pill can aid digestion. poo pill? a dried, disease free bit of someone else's poo. the idea is, you swallow the pill and inherit the donor's good quality, dried, gut bacteria. to rebuild your own.

now here's my business plan: while they are healthy, people deposit a large poo with ppp, poo pill protectors. ppp turns the poo into pills, sealed and nicely wrapped, to return to the poo creator. for a generous fee.

after a course of antibiotics the poo creator swallows a poo pill -- to restore their *own* healthy bacteria balance to their own gut.

brilliant, eh?

===

deb is unimpressed so we drive on -- past the pill factory for rent or sale -- to our appointment with the cancer doc.

sort of good news, she says, no iv drip today. your blood levels are too low.

judging by the colour of my pee, i am no longer dehydrated, i tell the doc. losing my taste for tea and coffee leaves me low on caffeine, causing a very mild, occasional headache. i am also -- still -- alternating between feeling chilled and sweating hot. annoying but not, i feel, serious.

i'm quite well, all things considered :-)

after some question and answer, plus later explanation from deb, we get more facts on blood levels and less reassuring (or not)  hand waving.

my latest blood test shows that my white blood count (neutrophils, says deb) are at 0.2. no chemo at any level below one, says the doc. normal range is 1.5 to eight, says the internet. this low level means that i am not equipped to fight disease.

the other blood level is platelets, the things that cause blood to clot. my blood is... no, no idea. just far too low for chemo.

so for today, my blood levels are too low to allow chemo :-) maybe i should not be smiling? changing the drip pattern is quite common, says the doc. if my blood levels are low at the next blood test, my upcoming "heavy" iv week may be delayed.

deb and i consider the bright side. the chemo is -- as expected -- destroying white cells and platelets. so -- also expected -- it is probably also destroying cancer cells. and today i do not get an iv in my hand. yes, i'm smiling :-)

meanwhile, i need to avoid cutting myself with someone else's dirty rasor.

we exchange a few other comments with the doc. the 24 hour emergency line was not answered, says deb. i suspect the nurses are too used to dealing with patients who are comatose, i say.

then we drive to subi for a celebratory coffee. mine, with sugar. i drink it all.

===

the rest of the day involves relaxing. running. my own 3km is slow -- but i manage to keep moving. good enough for a man with compromised neutrophils and platelets, says deb :-) shopping. more coffee.

really, quite a good day :-)

====    Dr Nick Lethbridge  /  Consulting Dexitroboper
Agamedes Consulting / Problems? Solved.
===

"I think and think, for months, for years. Ninety-nine times the conclusion is false. The hundredth time I am right." … Einstein
===

dying for you to read my blog: notdotdeaddotyet.blogspot.com.au :-)
====
   

it's a beautiful day

sunday: it's a beautiful day. weather that makes me think, how glad i am to live here.

i wake up at seven, early for me. after breakfast deb says, today i think we should walk, to a cafe for coffee. good idea, i reply. then i fall asleep on the couch.

two hours later i wake up and say, to the beach, we can walk to that nice cafe.

we drive to the beach with new, fancy cafes and restaurants. highly popular. the essence of over-development. we walk a km up the coast to an old established, really beachside cafe. families, dogs, children, old and young. you can walk from the beach, up a sand track to the open area of the ocean cafe. very very pleasant.

it's getting late so we eat lunch. then walk back to the car. oh, and i do enjoy the walk, staring at the ... beach.

a beautiful day in good company.

====    Dr Nick Lethbridge  /  Consulting Dexitroboper
Agamedes Consulting / Problems? Solved.
===

"I think and think, for months, for years. Ninety-nine times the conclusion is false. The hundredth time I am right." … Einstein
===

dying for you to read my blog: notdotdeaddotyet.blogspot.com.au :-)
====
   

news just in

Monday, news just in: Today's IV chemo has been cancelled. It seems that I am immuno-platelet compromised (thank you Deb:-)

Just an expected side-effect, no one particularly worried. More details later... probably in a separate post. First, it will be back to Sunday.

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

"Leaders are visionaries with a poorly developed sense of fear and no concept of the odds against them." … Robert Jarvik

===

Dying for you to read my blog, at https://notdotdeaddotyet.blogspot.com.au/ :-)

Virus-free. www.avast.com

ain't no such thing as...

i'm still feeling crook, physically. but emotionally, a lot better.

physical: tired, hot & cold, indigestible.

i spend a lot of the day feeling tired. sitting, sleeping, resting. yet when deb rousts me out of the house... i'm better. this afternoon i walk 4km though yes, i am tired at the end.

there ain't no such thing as a ... dry shirt:

i run hot & cold. at the end of the walk, for example, i am still very, very cold. i sit in the car, heater on full, to stop getting colder. eventually, with dinner, i warm up... straight into sweating. with varying levels of blankets and jumpers i sort myself out. it's no use putting on a dry shirt, it will soon be soaked in sweat. i just add a wool jumper when i cool down again.

i lack enthusiasm for eating. if i do not eat, my stomach starts feeling tense, upset. then there is reflux. a burning pain, mild at first. problem is solved by cool water or food.

so i eat a small meal, as several helpings. slowly. then eat a snack, something different, as soon as my stomach feels uncomfortable. a scone or two, that sort of thing, every couple of hours. or, overnight, regular glasses of water. this all seems to work.

breakfast is tricky... if i take too long preparing my breakfast my stomach gets upset. tonight i have left half a snack half prepared, ready for tomorrow. it should be ready to eat with just a very short -- and easy -- time to prepare.

as i learn to cope -- i feel happier.

there is no pain. the reflux hurts but i seem to have controlled, minimised, its effects. okay, there are months more of this treatment, it could get worse. but it may not.

best of all... i'm ali-i-ive !! hah ! take that, you epidemiological statisticians :-)

uncomfortable. ready to grumble. not worrying too much about future possibilities.

and that's about as close as i can get to describing my current status.

====    Dr Nick Lethbridge  /  Consulting Dexitroboper
Agamedes Consulting / Problems? Solved.
===

"I think and think, for months, for years. Ninety-nine times the conclusion is false. The hundredth time I am right." … Einstein
===

dying for you to read my blog: notdotdeaddotyet.blogspot.com.au :-)
====
   

a busy couple of days

it's been a busy couple of days since i did a runner from the hospital. exhaustion, upset stomach, emotional meltdown, pill popping failure, all bad. then gradual recovery -- or workaround -- for all of those. much better now, thanks :-)

===

wednesday, at home, thank goodness :-)

evening: deb is home from a tough day at work and an awkward delivery of grandson from daycare to his home. my antibiotic tablets are ready for pickup from the hospital. i say that i will drive to pick them up.

i turn into the small carpark nearest to where i need to go, it's full. several drivers see my expression -- i'm not happy, see previous post -- and jump into cars to drive away. giving me a wide berth and a choice of where to park.

in the ward, nurses cross the corridor to get away from me. the nurse at the counter hands over my tablets -- arms stretched toward me, to keep maximum distance. she apologises profusely. i turn on my heel and storm out.

 drive home along the centre white line to avoid having to change lanes. cars avoid me or else. i'm home before the police catch me.

i'm not sure if the above is 100% true. i am upset, i may have mis-remembered some details.

===

home :-) hot, sweaty, tired. but home :-)

as promised to the nurse, i swallow my antibiotic tablet. almost... at least i try.

it's enormous, i break it in half, put half in my mouth. add a mouthful of water, swallow. the pill hides under my tongue. more water, pill to top of tongue, swallow. pill is too quick, it's back under my tongue.

i move the pill to the top of my tongue. take a mouthful of water. pill and water are separate but, i think, i'll just practise swallowing. just water. get the feel of it.

i make the conscious decision to swallow some water... my tongue, mouth, jaws... will not move. i cannot even swallow water. not while that pill is in my mouth.

i have heard that it is impossible to take a block of wood and to deliberately knock yourself unconscious. it's like that. no matter how much my conscious mind says to do it, my sensible body will not do it.

okay. i spit out the somewhat soggy pill, add the other half. look for a spoon to crush the lot, swallow it mixed into yoghurt, i've done that before. i try to crush. think of the nine more in the packet. just cannot bring myself to do it. i dump the pill into the bin. the rest of the pills will soon follow.

then i melt down. put my head on my arms on the table and cry.

the word that comes to mind is "fragile", emotionally fragile. also physically fragile.

 i cry for a minute or two. deb politely walks around me. she has heard my accompanying language, knows what is going on.

that's it, decision made, i will not swallow those pills. now feeling much happier.

i send an email to the cancer doc... to her secretary, that is, i don't have the doc's email address. i say i am happy to try a syrup or soluble equivalent. if, that is, if there is any real reason why i should take an antibiotic. my email may be just a tad snarky.

each three week i-v chemo cycle begins with a single pill. i suggest that the next cycle should start with a syrup or soluble equivalent. just in case.

i go to bed at midnight and sleep a sound and untroubled seven hours. except...

===

my stomach is still tense. each time i wake up (still every hour or two) i need to settle my stomach with a glass of water. that works. it's not nausea, though once or twice it's heartburn. my stomach is just a bit... tense.

and there is the dream: each time i wake up it's from the same dream. i am about to start my next treatment and the treatment is a series of containers. each container reminds me of a body cell. all the cells are interconnected by thin tubes or strands. it reminds me of pictures -- very close up -- of the brain. yes, like the wikipedia diagram of a dendrite except lots of them, all interconneted. with a series of seven cells in a row, and that is my treatment.

when i see that row of seven cells -- and know that that is my next treatment -- i feel relief. what does it mean ? i have no idea. but i dream that same dream three or four times, possibly more. and always have the same feeling of relief when i see my "treatment". all rather strange. also strangely reassuring. for some reason :-)

===

breakfast time. i'm feeling okay. except for a tense stomach. that problem is soon explained...

i eat three mouthfuls of cereal -- and have to dash away from the table. to sit down where i can lean back. to remove pressure from my stomach. which feels as though it may explode. it's not the oft-promised nausea. it's the exploding stomach. here is my explanation:

i am eating but not very much. in hospital in particular, i eat each meal provided. i eat biscuit and cheese snacks. none of this is as filling as my normal diet. a hospital diet is nutritional and balanced -- but not balanced for me.

even at home, my tense stomach puts me off eating. last night's dinner was particularly light but it was all i could eat.

my stomach has shrunk to the size of a dinosaur's brain. a very small organ in a quite large body. when i eat i am quickly full so i don't eat much. the stomach continues to shrink.

the capacity shrinks, the actual organ may not. the fat gut is still there... aside: this morning i weigh 83kg: ten below my top bloat weight, ten above my target. about as much as a few weeks back, before chemo. i still wear my new fat pants. anyway...

my stomach is too small to hold more than a few mouthfuls of food, then it feels full, bloated, ready to explode. so i eat a very small breakfast.

then i rest. come back for a few more mouthfuls of breakfast. repeat till i have eaten a good breakfast. given this slow eating, my stomach accepts what is given. i eat small snacks every hour or two.

dinner is a reasonably sized meal eaten in six instalments, one every 10 or 20 minutes. it works! i now feel full but not bloated. perhaps i should have stopped at five? i believe that i shall sleep well tonight. and comfortably.

===

during the day we go for a run... i walk. a bit over 3km. slowly, feeling tired, no problems.

evening, after dinner one, i feel suddenly cold. not another chill? says deb concernedly. yes, i say but... i grab blankets, jumpers. wrap up warmly. in a minute or two i am hot, sweating. i cautiously and slowly remove blankets and jumpers. chill crisis averted, back to my multi-course dinner.

that's what happens: i eat, blood rushes to my stomach, rest of body loses heat distribution. especially bad when i have not eaten for a while. this time, i deal with it. no worries... phew :-)

i'm feeling positive. let's see how the night goes...

====    Dr Nick Lethbridge  /  Consulting Dexitroboper
Agamedes Consulting / Problems? Solved.
===

"I think and think, for months, for years. Ninety-nine times the conclusion is false. The hundredth time I am right." … Einstein
===

dying for you to read my blog: notdotdeaddotyet.blogspot.com.au :-)
====
   

done a runner

Wednesday morning 3am: second night in hospital

I wake up with a painful but minor cramp. Do the usual things to clear it, to prevent it coming back. Then I switch off all lights, lie back, realise I'm not going back to sleep.

I read for a while. Finish the big thick book (also big on action) that Deb had brought in for me, that was only the last 100 pages or so. Lie back, fail to sleep. Read half of a book stored on the tablet (lightweight chick lit with dragons, good fun). Read some stored docs that I wrote a year or two ago, to see if they are relevant for a current problem.

This may be the first time that I have been in hospital and been fully conscious.

I am bored out of my mind, I have had enough of this hospital. Decide that I will leave as soon as possible after breakfast.

===

Yesterday, after a day in hospital:

My temperature is back to normal. It may have happened just as quickly at home. Perhaps I panicked but I am glad I did, hospital care is reassuring.

I give a urine sample. Why? No-one really says. I give a blood sample. Why? The nurse suggests that there will be attempts to culture bugs, perhaps also from the urine? It will take a few days, says the blood nurse. I'm given no further information. I have my chest x-rayed. I'm told that a chest x-ray is standard for a cancer patient with a fever.

Blood pressure, temperature, heart rate are measured at regular intervals during the day. The only one I understand is temperature, it remains steadily on the cool side of normal. Evening comes. No word on the results of any of these tests. No hint that I will even get any results. Maybe when the doctor comes back, mid-morning on Wednesday?

I'm not told, I'm only guessing that the doctor will tell me anything. In fact, I'm only guessing that the doctor will visit on Wednesday. On Tuesday I am expecting "a doctor". I am actually surprised that it is the cancer doc. Will she be back? I have no idea.

Wednesday morning, about 5:30am:

The nurse comes in, takes the standard readings. No comment but I ask, she says that temperature is still steady at 36.1 (I think it is point one).

I tell the nurse, I am leaving. What time is breakfast? About 7am. I tell the nurse that I am leaving before breakfast, I will say goodbye to someone at the ward front desk as I leave. I tell her that I will even take the giant antibiotic and swallow it after my own breakfast.

But I will need a full course of antibiotics and the pharmacy does not open till eight. Someone will come by and pick up a bunch of the pills, I say.

Nobody has actually said, There seems to be an infection. Perhaps the first two pills did have a miracle effect, the serious symptoms have gone. Mostly -- as I understand it -- any temperature gets an antibiotic.

As far as I can tell, my role in all of this is to sit in a boring room while doctors try one thing after another. Looking for a cause for something which has already fixed itself. Yes, I am very grateful for the care and attention, for the two panadols and several antibiotic pills. If the crisis recurs I will return, hopefully with more evidence as to the cause.

Meanwhile I am uninformed, uncomfortable, bored and wishing I were home.

===

Out of the ward. Sign a paper that says that I have collected all that I own. It may say more but I don't bother with my reading glasses. Out of the hospital, into a taxi.

I am home before 7am. What a huge relief :-) I send Deb off to work ... and relax.

I am feeling much as I have for a couple of weeks: tired, stomach slightly uncertain. But happy. I eat some familiar food. I lie on the familiar (though uncomfortable) couch, for an hour's sleep. More food.

Midday: I feel so much happier than I did in the hospital. Stomach has had familiar food and is comfortable. Deb is at work but I can always talk to the cat.

Aaaahhh... it's great to be home :-)

====    Dr Nick Lethbridge  /  Consulting Dexitroboper
Agamedes Consulting / Problems? Solved.
===

"I think and think, for months, for years. Ninety-nine times the conclusion is false. The hundredth time I am right." … Einstein
===

dying for you to read my blog: notdotdeaddotyet.blogspot.com.au :-)
====
   

chest xray

i'm just back from a chest xray. simplest and easiest scan i can remember :-) 

i'm happy to believe that i have a touch of pneumonia. upper chest feels a bit tight. mind you, this only started when i wondered, perhaps i do have pneumonia. bad chest, or power of the mind? to be ... continued.

====    Dr Nick Lethbridge  /  Consulting Dexitroboper
Agamedes Consulting / Problems? Solved.
===

"If I had only one hour to save the world, I would spend fifty-five minutes defining the problem, and only five minutes finding the solution." … Einstein
===

dying for you to read my blog: notdotdeaddotyet.blogspot.com.au :-)
====
   

fast cheese

i'm snacking on cheese & crackers. from a handy pack containing just three small slices of cheese and three crackers. very convenient, very quick to access.

the cheese company slogan is, good things take time. makes me wonder: by taking the quick and convenient option -- by *not* taking time -- am i eating *not* good things?

makes me wonder if it's safe to give me a quick & easy way to post to this blog :-)

====    Dr Nick Lethbridge  /  Consulting Dexitroboper
Agamedes Consulting / Problems? Solved.
===

"If I had only one hour to save the world, I would spend fifty-five minutes defining the problem, and only five minutes finding the solution." … Einstein
===

dying for you to read my blog: notdotdeaddotyet.blogspot.com.au :-)
====
   

stuck here awhile

ah dang. i'll be in hospital for another night :-(

cancer doc comes by. i'll be here for another night. till i seem to be fixed. yes, i'm sweating again, otherwise fine. no more extreme temperatures, no more shakes. staying in hospital till it seems safe to send me home :-)

my blood and pee are being analysed, will new life be created?! looking for nasties, it will take several days. i'm given two panadols, one giant antibiotic. i manage to swallow them, it takes twenty minutes.

i tell deb. ask her to bring me a very thick book to read.

meanwhile i have charged up the mobile hotspot, i now have internet, phew :-)

====    Dr Nick Lethbridge  /  Consulting Dexitroboper
Agamedes Consulting / Problems? Solved.
===

"If I had only one hour to save the world, I would spend fifty-five minutes defining the problem, and only five minutes finding the solution." … Einstein
===

dying for you to read my blog: notdotdeaddotyet.blogspot.com.au :-)
====
   

more positive view

tuesday morning, still in hospital. recovered?

i spend the night -- till 6am -- sleeping soundly. despite being on very damp towels, changed once or twice, because i'm sweating. the sheet and pillow underneath are worse, that's why i'm on a towel. a towel feels more comfortable when wet. every hour or so i get up to pee. then fall asleep again very quickly.

strange. during these sleep hours the room temperature is comfortable. warm enough for just a light blanket. now i'm awake, the room feels cool. i have pulled up several blankets to keep warm. is the air con shifting to daytime? is it me?

i may need to rethink my cause-and-effect for feeling cold.

===

i sleep till i'm woken by a nurse at 6am. eat the biscuits and cheese from last night. drink water, get another cocoa (milo). answer questions... we don't have your file, they say. in the ivy clinic, part of this same cancer centre, one floor below, i suggest. but that is a world away. i'm guessing that ward and clinic are two separate kingdoms with no casual communication.

i provide a "mid stream" urine sample, tricky. pee a bit, stop. pee in a jar, stop. finish peeing. did i stop too soon? am i still too soon for mid stream? what if i pee too much and have nothing left for the jar? i pee something into the jar. good enough.

temperature now 35.something, from fever to mild chill. expected, says the nurse. cured, i think. i still have an intermittent headache at 1 on a scale of 1 to 10. low on fluid or salt, i would say. like recovering from a hot sweaty run.

===

default breakfast arrives. there will be pills later, antibiotic just in case and panadol or similar against fever. possible checkout? 8:30 or nine at the earliest, after doctors arrive. deb is on her own for a full day with the grandson. we hope that she/they will pick me up eventually. i say, set a time to suit child minding. i can easily wait.

time to eat. starting to sweat again. sheesh. feeling fine but would rather be sweating at home :-)

====    Dr Nick Lethbridge  /  Consulting Dexitroboper
Agamedes Consulting / Problems? Solved.
===

"If I had only one hour to save the world, I would spend fifty-five minutes defining the problem, and only five minutes finding the solution." … Einstein
===

dying for you to read my blog: notdotdeaddotyet.blogspot.com.au :-)
====
   

what a shemozzle

monday night: i'm back at the hospital, overnight, waiting for yet another iv drip. this time for a possible infection. as if :-(

the day starts well. time for a bit of shopping. a good lunch, a sleep. then off to the cancer doc for... i guess it's a progress report, an update. all good. side effects are a very minor stomach discomfort -- but i enjoy a good dinner -- and the usual fatigue. none of the scary stuff.

then across the corridor to the ivy clinic. half an hour waiting then an hour for the half hour drip. it's always slow, what with checking and pausing between stages. also as usual, the room is cold. very cold. i come out feeling fine but cold.

i eat and enjoy a good dinner. lie on the couch to watch tv. get colder and colder and colder. deb turns off the fan. i add jumpers and blankets. too late... soon i am shivering and shaking uncontrollably.

except for the extreme shivering, this is quite normal for me. i eat, i rest, i get cold. then warm up after an hour or so. tonight is just on the extreme side of normal.

my temperature reaches 39.1... now i'm feeling hot :-( deb phones the ivy clinic, no-one answers. 24 hour emergency number? failed. i think she phones the main hospital, they get someone to answer.

the cancer doc is called, we can't call her directly, she calls back. take panadol, wait an hour, she says. we do that, temperature drops to 38.3 (i think), still too high. we are told to drive to the wards that are part of the ivy/ cancer centre.

we check in. temperature still too high. room bloody freezing cold. i'm alternating between very cold and dripping sweat. again, this is normal for me, i have very poor temperature control, especially when cold.

ward doctor wants to put in an antibiotic via drip feed. i seem to have convinced him that iv is not necessary. as punishment he prescibes a massive tablet, takes a while to get it down. and a nurse takes a blood sample.

 temperature now 37.1, is that near normal? i think so.

===

settling in to a night in a strange room. no deb :-( but i'll sleep, when the "excitement" has faded. cocoa and cheese & crackers for supper. not really hungry but the cocoa is nice. i missed dessert at home -- home made golden syrup pudding. i was looking forward to that :-(

i'm feeling... no worse than usual :-) tired. running hot and cold. probably did not need to leave home at all. but, just in case, it's nice to be in a place where i can be told -- with reasonable reliability -- that it's all okay. it may upset deb but -- i hope -- less upsetting than watching me mumble and grumble all night.

panic passed. as far as i can tell. but... what a shemozzle !

====    Dr Nick Lethbridge  /  Consulting Dexitroboper
Agamedes Consulting / Problems? Solved.
===

"If I had only one hour to save the world, I would spend fifty-five minutes defining the problem, and only five minutes finding the solution." … Einstein
===

dying for you to read my blog: notdotdeaddotyet.blogspot.com.au :-)
====
   

slow recovery

saturday night i stay awake till 1am... when i feel well enough to go to bed. not exactly "well" but "well enough". and i sleep very well. except...

but first: on friday we were child minding. we? i was asleep all afternoon. grandson -- so deb tells me -- commented, if grandad sleeps all day won't he stay awake at night? good thinking... except that my superpower is to sleep all day *and* all night :-)

===

when i finally get to bed on saturday night -- after sleeping and dozing for a lot of the day and evening -- i sleep well. except that i am up every hour to have a pee. the dex effect is wearing off. fluid retention is reversing. when i weigh myself in the morning i have lost 2kg since yesterday.

i'm still bursting out of my clothes. after a gentle stroll (for coffee) i ask deb to go to a clothes shop. i can barely walk -- i cannot sit comfortably -- in my size 34 shorts. i buy the same brand and style at size 38 and can sit comfortably. though if i need another pair i may buy size 40.

===

i try to be honest and complete in this blog. sometimes it takes a few days to be able to describe something. especially feelings.

late last week (friday?) i go for a very short walk, 2km. i'm tired and feeling not so good. as i walk i'm thinking of death. not of dying but of the inevitability of death. gloomy thoughts.

the walk helps. by the end i have stopped thinking of death. started thinking of... just... how bad the cancer treatment is. usual stuff :-)

by now i am back to standard: putting up with the treatment, complaining about it, enjoying being looked after by deb.

===

this morning i hit my hand on a cupboard. and bruised a lot. increased sensitivity? luckily my latest drug builds white cells so i won't get infected :-) so far -- good news -- none of the possible side effects of pain as the white cells grow.

now i'm tired and don't like to stand up too suddenly. not too bad. improving... till the next major treatment :-)

====    Dr Nick Lethbridge  /  Consulting Dexitroboper
Agamedes Consulting / Problems? Solved.
===

"If I had only one hour to save the world, I would spend fifty-five minutes defining the problem, and only five minutes finding the solution." … Einstein
===

dying for you to read my blog: notdotdeaddotyet.blogspot.com.au :-)
====
   

home but tired

i'm sitting at home but too tired to stand up and use a proper keyboard. so, more single-finger typing with no spell-checker. it's a tough life :-)

tired ? mostly my own fault, i think.

===

deb picks me up friday. we're home before ten pm. then i stay up till 1am (or was it later ?) trying to solve a programming problem...it's the sort of thing i enjoy, usually. this one, though, is getting nowhere. partly because i'm too tired to really think. also because i am trying to write code in an area where i am totally ignorant. as are the people who flood the web with "examples" and "explanations".

so i spend many hours awake to no great purpose. just pleased to have finished a week of daily chemo drip-feeds.

===

saturday, of course, i am exhausted.

the plan is: give a blood sample at a local collection centre. have coffee & cake. go to ivy clinic for ... just a quick injection. then enjoy the afternoon. possibly go for a short run. so what happens really is...

the plan is good. there's a long wait at the blood collection centre. i add to the delay: i have a card naming the required tests. i should have filled in a lot of detail on the card. i haven't. so the blood collecting nurse is delayed while we complete the card.

still time for coffee and cake. i have lost my appetite for coffee -- changing taste-bud preferences, water still tastes flat. i drink half my coffee. we drive to the clinic.

not too crowded at the clinic, i'm soon lined up to be injected. except that the injection is not on my chart so the drug is not ready. i wait while it's fetched. deb comes in to sit with me while we wait.

this drug is injected into my stomach. plenty of fat to pump it into, says the nurse. true enough :-) though today's weight is no more than yesterday's. i'm still 15kg heavier than pre-cancer. side-effects for this drug could include fever (possibly dangerous) and aching arms and shoulders (take panadol unless it gets really bad).

something about neutrophils? and white cells... this drug will stimulate white cell growth, to help me fight disease. rapid white cell growth may cause pain.

i must have said it before, the treatment is far worse -- in the short term -- than the disease. sheesh. i was feeling quite well till this cycle of chemo. feeling well ? well, feeling a lot better... not to worry, by the end of this day's post i should be not ... too... bad :-)

===

we get home for lunch. oh, deb had parked the car at the hospital and left it unlocked with the key in. but we won't mention that :-)

i have a bland lunch then sleep for hours. deb goes for a run. later i go for a walk, two km, very slow. i feel as though i have just run a long, fast trail. i tell deb that i definitely need larger clothes, no way i fit into what i now have.

more sleeping, more reading.

i eat a reasonable -- and delicious -- dinner. my digestion struggles to cope but eventually feels better for good food. i feel well enough to stand at the pc, to try to solve my programming problem. no luck.

===

when my stomach is upset i prefer to sleep sitting rather than lying down. and to sleep within easy reach of a toilet... also i have been snoring so loudly that it wakes me up. i can't roll over to a less snoring position or my stomach complains. painfully. (acid reflux? all part of the fun :-)

it's now a bit after midnight. my stomach is not happy but it's not threatening. i feel a bit flushed but deb checked earlier, temperature is normal. i may go to bed. deb will just have to put up with my loud snoring... probably better than worrying about why i'm not in bed.

====    Dr Nick Lethbridge  /  Consulting Dexitroboper
Agamedes Consulting / Problems? Solved.
===

"If I had only one hour to save the world, I would spend fifty-five minutes defining the problem, and only five minutes finding the solution." … Einstein
===

dying for you to read my blog: notdotdeaddotyet.blogspot.com.au :-)
====
   

yes, it's a waiting room

i barely move all afternoon. resting, dozing, sleeping. deb and grandson play around me, i guess. tired ? i blame the drugs :-)

deb drops me at the clinic just after 4pm. the plan is, i give a blood sample then walk to the clinic for 4:30.

blood collection is a locked door with a sign, take a number and ring the bell. so i do. and wait. and wait. a lab courier walks by. i stop her, ask... she says the collection centres are all closed by now. i suggest that the notice here should include opening times.

on to the clinic, well before 4:30.

===

it's now after 5:30. we -- people waiting -- are told that next chairs may be free by six pm. sigh...

===

hmmm i may have lost something there. not to worry, nothing too exciting i'm sure. i'll invent something new :-)

===

i'm in and intubated bt 6:30. dinner arrives first and gets put aside. not much different warm or cold. chicken rendang, i'm told. it may be chicken, hard to be sure. rendang? not if rendang includes spices. still, an enjoyable meal.

the dex effect may be adapting. appetite seems up, water seems to be passing faster. but today's weigh in is still up a kilo on yesterday.

all very easy today... once rush hour has passed. i do twitch my wrist a couple of times and stop the pump. just can't go to the toilet one-handed.

===

i doze a lot. it's now 8:30pm, i'm on the first drug still. i think. most patients have left. i expect to leave by 10 or 10:30. another late pickup for deb.

now i'll relax some more. it's still very cold in here but i'm wearing an extra thermal and jacket. cold but not frozen.

===

I'm either last or second-last to leave, just after 9:30pm. Nice to be picked up by Deb. Having a mobile does make the pick-up easy to arrange.

Now home. Ready for bed. Once I've unwound a bit. Unwound after a day of doing nothing ? Well, once I've spent some time enjoying being home again :-)

====    Dr Nick Lethbridge  /  Consulting Dexitroboper
Agamedes Consulting / Problems? Solved.
===

"If I had only one hour to save the world, I would spend fifty-five minutes defining the problem, and only five minutes finding the solution." … Einstein
===

dying for you to read my blog: notdotdeaddotyet.blogspot.com.au :-)
====
   

cold and colder

from yesterday: It's cold in the Ivy Clinic. Nurses comment on it. Yes, it's cold, the renovation work affects the air conditioning, do you want a blanket? I have a blanket, I'm still cold. How cold? Hours later -- at home -- I am under blankets, wearing jumpers, still cold.

I go to bed early, even before Deb. I spend the first half of the night under every blanket, plus the winter-weight quilt. Finally -- after hours of restless sleep -- I wake up warm. Pajamas are damp with sweat and I'm finally warm.

I sleep comfortably for the rest of the night. Comfortably except for a flow of snot -- as though I have a slight cold. So far back in the nose that it won't blow out. If I lie anyway other than with my nose pointing down, I make annoying snoring sounds. Even while I'm awake. Yes, Deb does notice but only admits it when I mention the noisy night.

This morning: It's a full day of grandson watch, something I enjoy. Though it's exhausting ! I tell Deb, Not today, I'm going to rest. I'll join the fun when they come back here after lunch. Just for a few hours till I get dropped off at the clinic.

I eat a standard breakfast. My digestion feels uncomfortable but otherwise fine. Food goes in, I feel better for it. Food gets processed, leftovers go out, I am relieved :-) I feel as though my lungs are clagged up with a cold, I try a puff of Ventolin, it does seem to help.

I phone the clinic, tell the receptionist that the room is very cold. She says she will talk to the nurses. I refer to my first paragraph for today. Receptionist says she will talk to "environmental services". That sounds worth doing. I thank her.

Then I lie down, relax, read for an hour or so. Again, wearing jumpers and under a blanket. By 11am I am warm again.

No run today... I just can't be bothered. But I do go for a walk. Just over 3km, past the Far Playground, back to the Near Playground. (Names which make sense if you know where they are relative to our house.)

Now I've eaten some lunch. Washed last night's sweated-in pajamas. Feeling as good as ever... Well, as good as I have for the last few days. Which is, not ready to run but not too bad. No major side-effects from the chemo. Except...

Yesterday, a cannula popped out of its vein. There was a bit of a bruise but no pain (once it had been removed). This morning I checked that hand. No bruise. But...

The hand -- both hands, in fact -- are noticeably swollen. So is my face, particularly the lower half. My whole body is swollen -- visibly. Thank you, to the water retention properties of my daily Dex.

There are a lot of possible side-effects to this chemo. I was looking forward to the weight loss. At a kilo lost per week I could be at my "target running weight" after three treatment cycles. (Ever since I started thinking of a suitable running weight I have kept the same target. And have always been heavier.) Now I am 20kg over -- and rising at a kilo per day. Sigh...

Still, the next two weeks are light chemo only, Mondays only. Perhaps the Dex will be dropped. Perhaps I will lose some fluid weight... Perhaps :-)

It's almost 1pm. Deb and grandson will be here soon. Time for me to have a shower, look as though I'm ready to be dropped at the clinic. With time for a couple of hours of being entertained by our grandson. While Deb does the heavy lifting of looking after him. As usual :-)

====    Dr Nick Lethbridge  /  Consulting Dexitroboper
Agamedes Consulting / Problems? Solved.
===

"If I had only one hour to save the world, I would spend fifty-five minutes defining the problem, and only five minutes finding the solution." … Einstein
===

dying for you to read my blog: notdotdeaddotyet.blogspot.com.au :-)
====
   

day four: ouch

typing left-handed, one finger. may need to be very brief. better word: concise. already into my normal verbosity :-)

i prefer to have the cannula in my left hand or arm. so i can type with my right. nurse inserts the cannula on the left. starts the drip pump. a very minor dull ache grows worse. i'm thinking of fainting, deb worries, i call the nurse.

it's come out, she says. blowing up a bulge under the skin. ouch!

pump off. cannula out. change hands. i barely feel it go in. connected. pump on. feels fine. left hand wrapped in bandage, no remnant pain at all. pumping in on the right, no trouble at all. except that i am now typing, very slowly, left handed.

last night i'm being disconnected. nurse says, it's out... don't look... there's blood. i don't look but it doesn't worry me at all. it's not the blood -- not just the blood. it's the thought of having something stuck into my vein.

a port is suggested, a vein connector inserted under the skin. one day procedure then simple click in for each drip. deb will ask if a port is "permanent". i actually prefer the thought of the daily cannula. i don't like it going in, i'm not comfortable (in my mind) while it's in. but i'm glad when it comes out -- and thoroughly enjoy going home with no attachments.

going back even further: when i was much younger, mid twenties, i donated blood. never enjoyed it, never looked. not even the time when doctors and nurses took turns to look at my bag of blood, to shake it, to call the next person to have a look...

perhaps my blood was green? my best guess is that it was flowing very, very slowly.

by the fifth and sixth donated pint i was feeling faint after the donation. not from loss of blood but from the not liking of a needle in the vein. after each of those donations i really needed the biscuits and drink -- and time to recover.

i was in to donate my next pint... when i almost fainted... in the waiting room. that day i did not donate. the red cross never invited me back again...

i really don't like the needle in my vein :-)

===

now i'm comfortable again. left hand has a bandage but no more pain. right hand has a cannula but neither ache nor pain. deb leaves. she'll take grandson from daycare to his home, head home herself. to finish the weekly housecleaning. then back to pick me up at about 7pm. poor deb, another long day.

in the list of things that the dex drug does, i may not have mentioned that it is an upper. a mild stimulant. on top of that, when i get home i like to "unwind" before i go to bed. unwinding usually involves a book and the pc.

last night i'm trying to access an online spreadsheet from my developing phone app. it's a new technique for me and clearly just as new for the people who posted examples on the web. none of the examples work. some are just nonsense.

i'm up till 2am trying variations on the apparently simple commands. i can get data from the spreadsheet -- huge feeling of satisfaction -- but it's not in a form that i can read. this morning i may have found an answer but have no time to test it.

===

the ivy appointment is rescheduled from 9 to 2:30. that gives us a "free" morning.

we go for a run, i stay with my daily 3km. is the run before chemo helping? i don't know. but i do feel good for the exercise. my only noticeable side-effect -- so far -- is a tense stomach. feels just a bit unsettled. has no interest in fatty food. oh, and taste-buds are somewhat... muted... tasting food as being a bit flat.

otherwise i'm feeling well. tired after too little sleep. today i let deb do all the driving.

===

i've had a drip of dex in saline. a litre of saline to keep the kidneys working. now i'm getting the b drug... in another litre of saline

it's 5:30 and all is well :-) a bit cold. a bit tired. but feeling comfortable.

===

Almost 9pm. I've been snoozing in front of the tv. I snoozed at the clinic, it's nicer to snooze at home with Deb. Not sure if I'll be with Deb tomorrow for grandson minding. It will start before 8am and I start at the clinic at 4:30pm... would be a very long day. Just as long for Deb but she's tough :-)

Time for bed. See how I feel early tomorrow morning...

====    Dr Nick Lethbridge  /  Consulting Dexitroboper
Agamedes Consulting / Problems? Solved.
===

"If I had only one hour to save the world, I would spend fifty-five minutes defining the problem, and only five minutes finding the solution." … Einstein
===

dying for you to read my blog: notdotdeaddotyet.blogspot.com.au :-)
====
   

drip-day three

it's 6pm. i'm tubed up, cannula in the left arm, drug dripping in. deb has just left, she'll be back about 10pm. okay for me, a late night for deb.

exciting medical news: my bowels have moved :-)  funny, that of all the possible side-effects the one i dread most is constipation. perhaps because it's so awful -- and so understandable. my stomach feels a bit stressed, no interest in fatty foods, appetite otherwise fine.

it's dinner time, i'm eating clinic sandwiches. hungry but not for another toastie.

===

the clinic room is long and narrow. a row of adjustable chairs down one side, a couple of metres between each chair. adjustable, i enjoy controlling my chair :-)

woman in the next chair was on the phone when i came in. she's just hung up, an hour later. that's one way to fill in the time. her husband is sitting in the visitor's chair. aha! he's just started talking with her. he offers patient company :-)

===

deb checks one of the information booklets. yes, my daily dex is a steroid, anti-nausea, an appetite builder -- and causes fluid retention. good news: i no longer need to wear a belt.

here's a side-effect that i was not warned about: chafing -- extreme itching -- in the bum. in the crack between my buttocks. extra weight, more flab to rub, chafing. sometimes from sitting and sweating. more likely from jogging and sweating a lot. easy fix, apply vaseline before running. no more chafing.

it's cold in here tonight. i ask for, receive, a blanket. may snooze for a bit.

once the tube is in my arm, i have nothing to do. (except go to the toilet. wheeling the stand with drip bags and pump.) bags are changed while i just lie back and relax.

i've turned the stand so i can see the control panel. another 60ml of this litre to pump. ah, the excitement :-) it's becoming a routine. should be less and less to blog... i hope.

an email today gives the schedule for the next cycle. one week daily dripping, two weeks of monday drips. the second cycle starts immediately after this one ends. then the third cycle -- yet to be confirmed -- will run through the easter orienteering carnival. i doubt i'll be running. i hope i'll be okay to stagger round my courses :-)

time for another litre of drug drip. then... snooze.

===

ooohhhh... i just voluntarilly joined a conversation ! we discussed naming conventions of grandparents for their children and grandchildren. the more living oldies there are, the more confusing it gets.

phew, done. back to snoozing, neighbour is back to knitting.

===

as we suspected, tomorrow will be rescheduled. to allow a minimum time (12 hours?) between doses of tepozide. whatever that is. if i heard the correct name. not one of the bep & ep combinations on my schedule, anyway. an extra, definitely beginning with t. probably :-)

time still to be finalised, probably 3:30 rather than 9am. good, suits me. we'll get a phone call tomorrow.

aha... etoposide... it's the e drug.

===

I snack on coffee and cake and biscuits, appetite still good :-) Go to the toilet, twice. There's a lot of saline dripping into my vein. My kidneys are still working well.

Deb picks me up at quarter past ten. Relax, drink tea, eat light snack. Deb is now in bed. I'll wrap this up, play a bit of WoW, write code to access a web database. Tired but restless, I need to unwind before I sleep.

Good to know I can sleep in tomorrow. I'll be back at the Ivy Suite sometime after lunch rather than by 9am. Plenty of time for us to do the regular weekly shopping. And go for a run...

====    Dr Nick Lethbridge  /  Consulting Dexitroboper
Agamedes Consulting / Problems? Solved.
===

"If I had only one hour to save the world, I would spend fifty-five minutes defining the problem, and only five minutes finding the solution." … Einstein
===

dying for you to read my blog: notdotdeaddotyet.blogspot.com.au :-)
====