Tuesday, November 30, 2010

Timing Is Everything

The appointment with Tatiana went well.  Confirmed weight loss from the gastric bug was 11.5 kg.  While I'm happy about the weight loss, not impressed at all with how it was achieved.

Tatiana also checked my blood pressure - OK, but a bit on the low side.  She was most concerned about my overall fitness level.  Seems when I breathe in and out deeply (as I had to for her to listen to my chest, etc), my heart rate goes up.  That means my overall fitness has dropped and I'm now on a routine of walking, etc to try and rebuild it.

Not something I'd thought about as a side effect of the gastric thing, but there you go.

Also now have some sleeping pills, and I can confirm they do work.  At last getting some sleep and that has improved my demeanour immensely.

So, on to the subject of this post.  While I'm obviously happy to be eating three meals a day orally, the ongoing concern is my weight.  Having forgone the fortisip and night feed, obviously if there isn't sufficient nutrition going in, my weight will drop and Paul the dietitian will make me start taking fortisip,etc again to get my weight back up.  

After the last appointment with Paul, I weighed myself at home and there was only 100gm difference.  So, at least we know the scales at home are near enough accurate.

But here is the kicker.  I weighed myself one morning and I was best part of a kilo lighter than I was.  Instant panic set in and I started eating anything and everything I could.  Then, I thought about it a bit more and re-weighed myself in the afternoon, at about the same time I was weighed at the hospital.  I'd put on 200gm.  So, moral is weigh yourself at the same time (and in as close as possible the3 same clothes for weight) unless you want a fright or two.

The extra 200gm is still there, but think I really need a bit more to placate Paul.  Work in progress that one.

If things continue this well, hopefully at the appointment on the 22nd, there will be discussions about removing Jake.

Monday, November 22, 2010

It's Not About The Bike

Not long after my initial diagnosis, my colleague Glenda bought me a copy of Lance Armstrong's book "It's Not About The Bike".  

The book tells the Armstrong story up to his second Tour de France win and therefore encompasses his diagnosis and subsequent battle with testicular cancer.  I finally got around to reading the book during my recent hospital stay and fought it very enlightening.

One of the reasons for this blog was to record what was happening to me and how it affected me, etc.  The details I went into about how the chemotherapy and radiotherapy affected me has however been reasonably to the point.  This is where the book was quite enlightening.  Actually reading in vivid detail how it affected Armstrong bought home to me some of my own experiences.  While my dosages were nothing compared to his, I suddenly remembered things that I had obviously suppressed.

The book was good for a number of reasons.  Firstly, it is very easy to dislike Lance Armstrong for his arrogance, but equally it is possible to empathise with him over his medical issues.

From the pure cancer sufferer/survivor viewpoint, his depiction of his trials during treatment and his feelings post treatment were very profound and easy to relate to.

If you really want to understand how this treatment "feels", I suggest you get hold of the book and read it.

I'm pleased I didn't read it earlier as it would probably have put me off the treatment, but I actually feel better for reading it, knowing how others have been through similar experiences always helps.

Sunday, November 21, 2010

The Lost Art of Sleeping

Things continue to pick up on the health front.  Seems things have settled down and bowels now back to normal.

Even the eating is continuing apace.  With the help of a diet sheet from Paul, I'm now eating three meals a day.  Breakfast is porridge, lunch tends to be noodles at moment and dinner is usually minced meat (beef or chicken), mixed veges and mash.  Dessert tends to be fruit and ice cream.  As a result, I haven't been taking any fortisip to top up as I've felt full enough with what I'm eating. 

The problem to overcome now is a lack of sleep.  I'm struggling to get more than an hour or two each night.  For the last few months, I've always had morphine pumping through me and that has no doubt aided my sleeping.  But now, I'm totally drug free and don't have any aids to assist sleep.  Over recent nights I've tried some natural drops and then some gel tablets to try and help, but they have had limited success. I feel tired when I go to bed, but sleep is just eluding me.

Last two nights I've also not put the overnight feed on so I could lie down in the hope that would help.  Again, limited success.

So, I'm at somewhat of a crossroads.  I'm surviving on minimum sleep and managing to get through the day, but concentration and energy levels aren't where I want them to be.  Also as a result, my overall energy levels aren't where they should be.

Have appointment with Tatiana tomorrow (follow-up from the gastric bug as instructed by the hospital), so no doubt this will get raised then.

As a closing comment, while I'm enjoying eating again, I can't wait for when I'm able to eat real food.  Minced is fine, but steak, eggs and chips it isn't.

Wednesday, November 17, 2010

The Bug That Keeps on Giving

Well, things didn't really work out well last week.

The gastric bug I had seemed to be finally settling down come Thursday, but my bowels were still rather delicate.  I weighed myself again and it looked like total loss was now approaching 12 kg.  Hmmm.

Come Saturday morning, I decided enough was enough and made an appointment with the after hours doctor.  Ruth S kindly took me down (by this stage I was pretty much totally whacked and devoid of energy).

As to be expected, doctor was running late, so finally got in 1/2 hour after scheduled time.  Proceeded to give him the background and in a short time he said "there is only one place for you - hospital".  He proceeded to ring Hutt and talked to one of the registrars, then gave me a letter to give them.  In all honesty, I was too weakened to even put up a fight.

We came back home and packed a bag, then tootled off down to A&E.  Getting from the car into A&E I almost collapsed I was so weak.  Fortunately, they were expecting me and got me on a bed/trolley quickly and into one of the cubicles.  They inserted a cannula, took some bloods then proceeded to start a drip. Eventually the doctor came to see me and agreed admission was the right thing, so went off to organise the paperwork.  Seems plan of attack is to largely let this thing work itself through, but they were going to re-hydrate me.

For good measure, they took some chest x-rays and after probably three hours, I was on my way to a ward.  Seems the hospital didn't want to risk whatever I had spreading, so they put me in an isolation room.

The isolation room is a negative pressure room - don't really understand what that means - but I had my own bathroom and wouldn't have to put up with the general noise of a normal ward.  Downside - no curtains on the window - something to do with the negative pressure.

Anyhow, over the following days they continuously had drips in me - with the exception of a two hour block on Monday morning.  Come Monday morning I was starting to feel better and the bowels were too.  They had been reasonably quiet during daytime, but reactivated so to speak during the nights.  Monday felt different though, there was a general firming that I hadn't felt for some time.

The Doctors decided they'd give me some drugs to bind me (at last) and would keep me in overnight to make sure there were no complications.  Plan was I'd go home Tuesday.  During Monday, Paul the dietician came for a visit and we agreed on some changes to my feeding plans for when I got home (all my fortisip and nutrison were hi fibre and we didn't want to subject the bowels to that too soon, so he'd provide some "normal" product) and also agreed to put me on a minced food diet.  The first evidence of that would be dinner Monday night.

When dinner duly arrived, it was meat, mash and carrots.  I can honestly say that was the first meal I've eaten for months.  The meat was easy to digest, carrots were a bit crisp still and the mash worked fine.  I pretty much cleared my dishes of meat & mash.  Tuesday morning breakfast was porridge (bland) but with the addition of some sugar, it was palatable and I cleaned up a good 2/3 of my portion.  People, I'm starting to eat again!!!

Tuesday morning comes and things are definitely on the up.  Bowels behaved overnight - and I'm eating again.

Doctors give me clearance to come home and after waiting for the food from Paul, I'm eventually home late morning.  Still feeling a bit weak, but 300 times better than I felt a week ago.

So there we go folks.  Another little hiccup on the path to recovery, but it had it's little silver lining - I'm eating with more ease now and consuming reasonable volumes that should help eliminate the fortisip from my day.

One step closer to Jake getting a holiday.

Tuesday, November 9, 2010

I Think I'm In Trouble

Those words uttered over the phone after 11pm on Friday night were the start of a nightmare.  The call was to Ruth S and at the time I was really struggling.  

I'd gone to work in the afternoon and apart from being cold, started to go to the loo with unusual frequency - and it was all about runny motions.  I didn't think too much about it at first because I'd take the lactulose in the morning that is designed to stop the morphine generating constipation.  Of course I wasn't taking morphine any more, so just thought this was my body adjusting.  I was so wrong.

I got home and between drinking copious amounts of water and going to the loo (every 1/2 hour or so), I was doing nothing else.  By the time I got to bed I was drained.  Things just weren't settling down, so I made the call for help to Ruth S.

First action was she rang the district nurses and they recommended we call the ambulance without delay.  The ambulance duly arrived and after some initial poking and prodding, they decided A&E was were I needed to be.  Calls to the district nurses and Hutt Hospital followed to see if they should take me there or to Wellington.  Hutt it was to be.

Walking to the ambulance took all my strength and the trip down was not comfortable, not least because I wasn't convinced I'd need to go to the loo again before we arrived.

Safely at A&E, I was moved to a cubicle quite quickly and they took bloods for testing.  It was about 1/2 an hour later I starting throwing up what was my overnight feed.  So now I had both ends working and was feeling even worse.  As is the way, the nurses all vanish for an hour or so, my time is spend going to the loo and having the odd occasional vomit.

Eventually a Doctor comes to see me and my bloods are OK.  She is sure I've picked up a gastric bug that would need to work it's way through my system.  I know my immune system is still slightly shot, but I though you got these things from dodgy food or exposure to someone suffering already.  I'd had no "suspect" exposure to people and wasn't eating real food, so seems I was just plain lucky.

They gave me an injection to try and settle the spasms down a bit then sent me home.  I was also off all foods until it came right.  I had to only have clear liquids.

The weekend was quite frankly bloody terrible.  I got no sleep Friday or Saturday nights because I was still up to the loo with annoying frequency and when I was in bed, I was sipping water to try and stop my throat drying out.  Sunday night wasn't much better either, but I somehow managed an hour sleep late in the piece.  Daytimes was the same routine - loo and water.

Monday I thought I might be starting to get a little better, but it wasn't to be and there was little sleep again last night.

Today, well I'm still unsure yet, so will bide my time.

I weighed myself yesterday and this thing has knocked around 7kg off my weight - that is scary.

Friday, November 5, 2010

Freedom - Phase 1

Freedom is something we all take for granted - we consider it one of our human rights.
We know internationally that isn't the case and so every so often something happens that makes us appreciate what we have.

For the last almost five months, my sense of freedom has been definitely under question.  Thanks to the syringe driver, I have had to accommodate a daily visit from the district nurses before I can really do anything.  I'm also constrained by my cocktail of drugs and the regime  that accompanies that.  And we mustn't forget my mate Jake.

Today is a momentous day.  Today the syringe driver and I parted company.  Yes it is a bit earlier than was originally planned, but  the district nurses and I agreed the morphine dose was now so small, it wasn't really doing anything any more.  I had moved from 200mg a day to 20mg = 0.83ml a day.  My top up allowance is 4ml every 4 hours, although I haven't had to use that at all for a number of weeks now.

So, today I had my first shower in months unencumbered and it was bloody marvellous.  I didn't really appreciate how restrictive the driver had been until that shower.

I feel like this is a real turning point in the recovery process today - quite possibly another Yippee!! moment as I can now move around without the damn syringe driver hanging off me.

My cupboards are now devoid of needles and associated drugs - when I'm eating properly, there will actually now be room for food!

This weekend is going to be great.

Monday, November 1, 2010

Another Yippee Moment

Had an appointment with the Hutt Hospital dental unit this morning.

I'm not sure whether it is a blessing or a curse, but I possess a rather strong gag reflex that is legendary within my medical team (and my normal dentist).  This reflex has meant every time the guys try to look down my throat to see just how the left tonsil is now, they can't see because my gag kicks in.

So, they decided to give me some laughing gas as that apparently overcome gag reflexes.  This morning's appointment was the moment of truth.

I would say it was successful, because they managed to get enough of a look before the reflex did eventually kick in.

The Yippee Moment - everything looks fine.  The tonsil is not showing any signs of sinister activity.  There is still some scarring in the throat from the radiotherapy, which no doubt explains my ongoing discomfort, but I quite honestly don't care at the moment.  I'm happy to just bask in the good news today.