Thursday, October 28, 2010

I Like Happy Specialists

Yesterday was my monthly follow up with Mr Hamilton and the "gang of seven", although the gang of seven seems to be dwindling and is down to around 5 now.

Mr Hamilton was impressed with how much better I am looking than when he saw me last month (good news) and he quickly put me at ease about the lump in my throat.  Seems it is blocked ducts that the radiotherapy screw with and if I massage the area from my chin down, he says it will slowly start to sort itself out, although there may be some long term residual lump.  You can't understand how much weight that lifted off me to know it wasn't anything sinister.

An examination of my neck, etc later and Mr Hamilton is still a happy camper, so am I.  Things continue to improve.

He feels the morphine reduction could be accelerated a bit and is really keen for me to persevere (push through the pain) and get eating, so will start to see what I can do about that.

My weight has also stabilised - up by about 1 kg - so everyone is happy on that front as well.  Total loss to date still remains around the 14Kg mark.

So, my loyal followers, it seems I'm still steaming towards recovery and TC is still accepting defeat.  Long may it continue.

Tuesday, October 26, 2010

And The Mystery Deepens

What a mission this morning was.

It all started last night with me needing to connect my feed pump up earlier, so I could then disconnect earlier this morning.
This morning (after another night of broken sleep), it was up at 6:30 and take first lot of meds, so main meds could be 7:30, so I could get on road to hospital - in rush hour traffic.  Lucky me.

Got to the hospital in time and they were expecting me, just not expecting to have to change site and they didn't know how to work the syringe driver.  It all washed out in the end - although we need to replace the extension kits that go between the syringe and the site because the ones they have fitted are way too short and I can't physically move the pump more than a few cm from me.

Next it was on to outpatients for my ENT appointment - the systems knew nothing about an appointment or me.  Great.  I'm told to sit down in the waiting area (each clinic has different coloured chairs) and duly get called in at 10am - somebody obviously knew I was coming. 

After detailing some background, the doctor duly inspects the area and decides he needs to view it down the scope.  so, numb the right nostril and poke the thing down. While this is the 3rd or 4th time I've had this procedure, it is still an uncomfortable one.

End result - don't know what the lump is, so will organise an ultrasound/scan and wants to see me again next Wednesday.  If the lump gets bigger in meantime, it's back to A&E.

Doctor's current suspicion is it is blocked drainage channels for saliva, etc that the radiotherapy as messed with.  He didn't consider it necessary to put a needle in and draw some of it out at this stage, thankfully.  He did say that he didn't think it was anything nasty as it wasn't a hard lump.

So, at the moment, I have no idea if this thing is actually sinister or not and won't know until next week probably.  I'm sticking with my belief that it has come up too quickly to be sinister and will leave it at that for the moment.

Monday, October 25, 2010

What Ever Happened To An Orderly Recovery?

With all the little setbacks I seem to have had so far along the way, that is the question I find myself asking.

I understand that the treatments were going to continue having an impact of my body for weeks after the actual zapping, etc stopped.
I understand that everybody is different and reacts differently, but why do I feel like anything that can happen, damn well seems to happen to me.

Latest little joy - another two hours at A&E today because my throat is swollen.  I noticed it yesterday and when I showed it to the nurse this morning she immediately made calls to the hospital.  So much foe a pleasant long weekend.  Now they're unsure what it is, so I get to have an appointment with the ENT team tomorrow morning.

But wait, that is at 10 in Wellington Hospital - so I am now waiting to see if the nurses can be here to change the driver over in a reasonable time frame to allow me to get to town. If not, will need to spend time on the phone with the clinic trying to sort out another time, which I just know will screw around my drug regime and probably won't be tomorrow.  So this is likely to drag on.  I'm currently working on the theory it is not a relapse of some sort of my cancer - it has come up too quickly.  Another reason why I'd like an answer quickly.

Yes, I'm feeling a bit down and a bit annoyed.  It's now been two months since the treatments finished, so I should be starting to climb back to normality (I can't actually remember what that is like, so suppose my new reality will be whatever I want to make it).  The dosage reductions are still going well (unless they are the cause somehow for my current situation) and I should be free of the pump by mid-November.  Hopefully then the throat will settle and I can attack learning to eat again with earnest - that's my current "plan" for November anyway.

I've also finally got my appointment for my follow-up hearing test.  It's not until mid-November, so have time to work myself up for that as well.  The prospect of having to wear a hearing aid (or two) isn't particularly pleasing, but if it stops the ringing in my head and let's me hear again, suppose it is all worthwhile in the end.

In case your interested, sleep patterns have returned to 90-120 minutes at a time and I'm starting to feel the sleep deprivation kick in from time to time.  Looks like I need to resort to nana-naps to try and catch up.

Tuesday, October 19, 2010

Antibiotics Make An Unwelcome Return

Seems its another one of those one step forward, two steps backwards scenarios.

The dosage reductions through the syringe driver continue to go well.  Sure, the throat is sore for a day or so, but it at least settles down again before the next round starts.  Yes, it interferes with my attempts at eating real food, but one thing at a time.

So, that's the step forward.  The first step backward is I've got another infection from the syringe site (picked up on Sunday by the District Nurse), so I'm back on antibiotics - this time for two weeks.  Second step - the inconvenience which comes with it, because it represents another cycle in my daily meds - they need to be taken an hour before food or two hours after, so I now have 2 four hourly cycles running an hour apart.

Where previously I could physically go to work in the afternoons and time things to be home again for my 4pm meds, I now have 3pm meds to deal with as well, and that screws royally with the whole thing.  The only way to now make the trip to work worthwhile it to take meds with me, something I've tried to avoid for a number of reasons.  Taking the antibiotics two hours after the 4pm meds just isn't an option as it bottlenecks the next set at 8pm.

To top it all off, they relocated the site on Sunday, but because they didn't have all the necessary preparation wipes, etc, they also moved the site as normal today.  Talk about being a pin cushion.  Something else I won't miss.

On the upside, and hoping I'm not jinxing it by talking about it, my sleep pattern is returning to something like normal.  While I wake up with a really dry throat as a result, the benefit of uninterrupted sleep is almost worth it. 

Thursday, October 14, 2010

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.

Monday, October 4, 2010

I Don't Need Another Weekend Like That

The effects of the "botched" med change lived on into the weekend with Saturday being a day from hell.

The weather on Saturday was brilliant and should have been a day for getting out and doing things, like having my monthly haircut, but instead it was spend almost doubled up in discomfort at times.

I started out the day with what seems to be an obligatory little up-chuck and then developed shivers and clamminess.  Not a good start, but unfortunately a sign of things to come.

The nausea was coming and going most of Saturday, comfort only coming from taking some ondansetron tablets (thank god we still had some in the drug stash).  Even then, I went through rough patches waiting for the drug to kick in - things got worse, before the pill finally kicked in and delivered the needed relief.
  For instance, the morning was spent wrapped up under a blanket on the couch.  Afternoon, I managed to ditch the blanket, but was so washed out from just trying to find some comfort that the afternoon was a snooze-fest.

Sunday dawned much the same way as Saturday had, but that nasty feeling in the pit of my stomach wasn't there to the same extent.  Still a slightly shaky start, but by mid-morning things had settled into somewhat of a "normal" state.  Maybe at last the revised meds had kicked in.  I suppose it took a couple of days to go off the rails, so should/would take a couple more to come back on.

As a precaution, Sunday morning was another spent on the comfort of the couch doing very little.  After the mid-day meds, I was feeling more like I was ready to tackle the outside world, so Ruth S and I went for a Sunday afternoon drive - with me in the hot seat.  It felt so good in so many ways.  Firstly, nausea was settled, secondly I was actually getting out of the house for the first time in days and finally, I was driving.

The obvious lesson to be learnt from this - don't just accept the changes to the meds.  I honestly feel my recovery has been pushed back by a good 3-4 days as a result of this mess.

It's now Monday morning and I had a disturbed night sleep.  Throat is really dry at moment - has been for the last week or so, so numerous stirrings to have a drink, followed by need to empty the now full bladder - an unwanted vicious cycle.  At best I get 1 1/2 to 2 hours sleep at a time at the moment.  Woke with a bit of a sore stomach, but by being very slow and calculated about my movements, there was no up-chuck this morning.  Did have a wee gagging session, but worked through that with more patience.  

So here's hoping things stay settled today and for the rest of the week as well.

Friday, October 1, 2010

Welcome Back

To Wellington Hospital Emergency Department.
Not the place I wanted to visit again so soon and especially on a cold Thursday night, but sometimes you have no say in the matter.

Seems I didn't touch the right sort of wood the other day when I said there were no side effects to the meds changes.

I had my normal 4pm meds yesterday, including my fortisip, then went and had a lie down.  At around 5:45 I felt rumblings like I needed a trip to the loo, but is soon became obvious it was the other end that wanted to do business.  I then proceeded to vomit - not big time. but enough to know something wasn't right.  Rang Ruth S who flew around in record time and it was onto the phone to the district nurses.  End result was as this was a new symptom, they wanted me to go to Emergency and the oncology registrar would be expecting me.

Believe me I fought this as best I could - the prospect of losing a night waiting didn't appeal, but in the end I had to comply.  Moira kindly assumed role of driver and we headed off, arriving there just before 7pm.  We then waited and eventually were taken through just after 8pm.  Then the next round of waiting started.  Cutting a long evening short, decision was to reset anti-nausea to original levels and hope that settles everything down.  Eventually got a new syringe all sorted and we got home around 11pm.

If this doesn't sort it, possible I've got some sort of gastric bug.

Slept pretty well, but have had a little up-chuck this morning as well and not sure if that is related or a by product of difficulties clearing my throat this morning (scan be a bit of a mission some mornings due to dryness overnight).  Stomach now a bit unsettled, so looks like we play wait and see for a while.