Dosage Drops Continue Apace

Oops, feel like I'm at an AA meeting....Hi, My Name is Russell and it's been 10 days since I last updated my blog.


A lot has happened as it goes.  The morphine dose in my syringe driver is now in a reduction program where every 4 days they reduce the dosage.  This time they're actually dropping the anti-nausea drugs by the same ratio, so there are no nasty side effects like I got last time.

They have also changed the driver for a new version that is unfortunately bigger, but looks space-age.  Why the change?  Well, the other one belonged to Te Omanga Hospice (replaced the original one I had from Wgtn Hospital, so I'm now on my 3rd device) and they wanted it back.  This is the standard model Hutt Hospital uses, so I had no choice, despite protestations.  The old one used 9v batteries that lasted 3 days.  The new one uses rechargeable batteries that last 3 days as well - downside is I have to stay plugged into the mains at various stages to recharge the damn thing (one of the reasons for my protest).  At least it is only for about a month (how long it will take for me to be off the morphine totally).  One other thing, I've had to adapt my little rig I had to hold the driver up by the shower to accommodate the new one.  No mean feat to try and keep the thing dry while you're getting your body wet (you hadn't really though about that problem had you?).


It is quite interesting this whole dosage reduction thing.  What tends to happen is the throat reacts somewhere around day 2 (gets a bit sore normally) and by the time they drop the dose again, it has settled down.  So it is somewhat of a roller-coaster ride.  Regardless, I've still avoided the need for a top-up, but it came awfully close the other night believe me.  I was having so much trouble trying to quell the discomfort that it looked like the only solution.  Just as I was resigning myself to having to do it, damn thing settled down enough to let me sleep.


What else?  Well eating continues to be somewhat of a challenge.  While I have a nice pile of suitable food, reality is eating it requires almost an alignment of the planets to work.  If the throat is sore (which it tends to be every couple of days as per above), swallowing aggravates it and a mental block comes up saying this hurts, let's not do it.  So the brain is now having an internal battle - eat so you can get rid of the peg (sorry Jake, appreciate what you've done, but this isn't a permanent thing) as well as saying let's not because it hurts.


Had an appointment with the dietitian and speech therapist earlier in the week and when I raised this they weren't terribly upset that I wasn't eating yet.  Seems it is another one of those things that will just happen when the time is right.  To some extent that relieved some pressure as I thought I wasn't doing good enough in this area.  
so it will be an as I feel like it approach going forward - throat not too sore, coupled with some difflam spray to provide additional soothing and something that once resembled real food to complete the process.


Another outcome of that meeting was I've lost another 3-4 kg in the last 2-3 weeks and that they weren't happy about.  Is probably due to my increased activity as I feel better on an almost daily basis, so am doing more.  Solution: take another fortisip each day to see if that stabilises/recovers the situation.  Yumm, not.  I'm now having two servings at lunch time and almost break out into a sweat by the time I've thrown it all down Jake.  Perish the thought this doesn't work and I have to have even more.  At that stage it would be really a case of trying to push eating I think.


Not sure if it is because I'm actually recovering, but I am drinking bucket loads of water!  I'm going through about 15 litres a week.  Know they said my throat would be dry because of the loss of saliva glands, but this is almost ridiculous.  I have a sipper bottle by the bed at night and every two hours I'm swigging from that to moisten the throat.  This coincides with the all too numerous loo stops.  I've forgotten what a full night's sleep is like, but hope one day to enjoy that experience again.  Last night was a bit of a rarity - I got a 3-4 hour session leading up to 6 o'clock this morning.  Man it was good, and the cats didn't even really hassle me for their food!  They were however very vocal once I put my feet on the floor.


So there you go, we're all up to date again.


On another note, you're all probably aware that actor Michael Douglas is being treated for throat cancer at the moment.  What he has is a more severe case of what I had (note PMA) and in a slightly different environment, but treatment regime basically the same.  A couple of observations.  Man he looks terrible.  Even at my worst, I at least looked reasonably normal.  Next, the guy is silly for refusing to have a feeding tube inserted.  Of course he's losing bucket loads of weight, he isn't getting nutrients.  Jake has been an asset to my whole process and I'm glad I took the option over the nasal tube.  What is this bollocks about it only being a 6-8 week recovery period.  Speaking from experience, it takes that amount of time for the treatment to stop screwing with your body after they finish.  I'm really only a few weeks into what I'd call the real recovery process.  All that said, I hope it goes well for him.


See you next time.