Thursday, September 30, 2010

One Specialist Down

Had my follow-up appointment with the medical oncologist (chemotherapy) on Monday and Raj was happy to discharge me from their care.  What that means is they see no need for me to see them again.  So I'm now solely in the care of the radio oncology team.

Also took opportunity to clarify my status regarding ability to drive (or not).  Having looked at the dosage of morphine, etc, he said there was no reason why I can't drive, so long as I'm responsible and don't drive if I'm feeling tired.  A bit of a no-brainer there I would have thought, but it is another bit of freedom restored to me.

So, another appointment down and more good news.

There will however have to be a follow-up hearing test to ascertain what level of hearing loss the cisplatin has caused and depending on the outcome, ACC will apparently fund the hearing aid(s) as the hearing loss is medical treatment related.  That will be good considering Raj was talking about $8k per hearing aid!  We'll just have to wait and see.

On Tuesday they made the changes to the dosages in the morphine pump.  Morphine reduced by 25ml and metodopramide was halved.  This surprised everyone as we expected it to also fall by 20% or so.  The potential impact of this is the nausea resurfacing and while I wasn't initially worried about it, the day's events would cause me to reconsider.  Late on Tuesday afternoon, I got a call from the district nurse who would be on the night shift. She was asking if I was feeling nauseous and was worried they had no medical orders that would allow them to administer the metodopramide ampule if required overnight.  I had been feeling OK all day and here they were now worried about what was going to happen overnight.  About 10 minutes later I got another call confirming that she had tracked down a registrar who had faxed through the necessary order.  So we were now all ready for me to suffer such severe nausea that I would have to call the district nurse in the middle of the night and have an injection in my butt to settle it down.  While it was nice to know they had plans in place, I'm not sure I really wanted to know about them as it was just introducing a level of anxiety I didn't need.

Anyway, as it turned out, I don't appear to be suffering any ill effects from the dosage change, touch wood.  That said, the last few days I've had a dry throat and had broken sleep as a result of numerous visits to the loo (increased liquid intake to deal with the dry throat).  Even today I just don't seem to have the energy I'd had daily prior to the dosage change.  Mentioned it to Jess (district nurse) and she doesn't think it is related to the dosage change - more likely the broken sleep.  So must just be bad timing along with other healing/recovery related changes.

I'm a bit annoyed about the lack of energy, because it is stopping me exercising my restored motoring freedom.  But for all you concerned people out there, at least I am being responsible and not putting myself or other motorists at risk :-).  On a normal day, I tend to  start running out of energy late afternoon, so at the moment travel plans tend to be timed for mornings, and with the timing of meds, that becomes quite a small window. 

I'm logging into work daily now and trying to do a few hours work each day.  Again hampered by my lethargy over the last few days, but it is good to be getting involved in things again.  Quite therapeutic and certainly gets the brain working.

Eating wise, on Monday night I tried a combination of mashed potato, mashed kumara and mashed pumpkin with gravy.  Again, not huge quantity eaten, but now have some of this in the freezer to be thawed as and when I feel like it.  Tuesday night had a forkful of fish - different texture, but again baby steps.  I seem to be forever fighting things on numerous fronts.  I really want to be putting more effort into learning to eat again (which in reality is what I need to do), but the lethargy saps the energy and desire all in one.  Keep saying to myself "baby steps" - it is important I don't force/rush any of this as it may lead to setbacks further down the track.

Enough for today I think - maybe a quick nap will recharge the batteries.

Thursday, September 23, 2010

The Words I Wanted To Hear

"There is no sign of the cancer growing back".

Those words at my appointment with the specialists yesterday lifted an almighty weight of my shoulders - and my mind.

I'd spent most of the day in various states of anxiety with the mind working overtime as to what they were going to say.  At the last meeting, we got the good news about the lump going down, but everything was too swollen to see the back of my throat.  So hearing those words was just so amazing.  I can't really describe the feeling, but by god it was good.

Yesterday they put a scope down my nostril (uncomfortable) and had a good look around (Ruth S and Moira said it was cool to look at) and it seems things are clearing up nicely.

So, now the words have been uttered and Round 2 says we continue to win.  Go Team Russell.

A heartfelt thanks to all the people who continue to support me through this.  There are times when your actions and/or best wishes are all that gets me through some tough times.

From here we start to reduce the morphine in the pump and this will be reviewed weekly with a view to further reductions.  If everything went 100% to plan (no need for any top-ups), the pump could be gone in about 5 weeks.  Freedom awaits.

The gang of seven was only a gang of 4 yesterday and they were happy with progress overall - next follow-up will be four weeks time.  No mention of oral thrush this time either, so maybe the tide is finally turning.

Another milestone - I had some mashed potato last night to celebrate.  I had what I'd call a small serving and ended up leaving maybe a forkful for the cats to mop up.  Not bad for a first up attempt.  Good thing I'm getting my dental routine under control with food about to become part of the equation more frequently.

So another baby step taken on the recovery route. Might have to see if I can have a bit of a race between Jake and Manny (the pump) to see who is made redundant first.

There you go folks, the post with the news I've been wanting to write for weeks.

Tuesday, September 21, 2010

It's Moments Like These

I actually feel like we're getting somewhere at last.

Today is a milestone moment as it represents the first day where there were no morphine top-ups administered overnight.  Sunday we cut down  the 8pm to 2ml (from 4ml) and did away with the 2am 4ml dose all together.  Last night, we did away with both all together and I'm feeling just fine .i.e. no withdrawals / side effects.

Why the hoopla?  Well, the need for the top ups has a direct relationship with the dose of morphine, etc that goes through the pump.  While I still need top ups, they won't look at reducing the "main" dosage.  With me not needing the top-ups, they can now look at the process of weaning me off the main dosage, and eventually off the pump all together.  That represents Freedom.

While I appreciate that the pump is a lot more user friendly than the alternatives people would have had available to them say 5 years ago, reality is it does restrict quite severely what you can do.

I have an appointment with the gang of seven on Wednesday, so this will be good news all round I hope.

Only obstacle to overcome now is the eating and efforts in that area have been hampered over the last few days by my throat.  When they changed the entrance site for the pump last Tuesday, I developed blood poisoning in the area and that has required a rather heavy dose of antibiotics to get under control.  One side effect seems to have been my throat is now a mixture of either very dry or very gooey-phlegmy, so trying to control that has been fun.  Not an environment I wanted to be trying something as important as relearning to eat in.

Don't know where the site is going today, but the outgoing site has already developed a lump, just hope it doesn't develop the tell tale rash as well.

Overall, I'd have to rate this as a good week, merely for the progress with the top-ups.

Appointments this week are Wed with the head and neck gang of seven.  Thursday is with dietician and next Monday is with medical oncology.  Not sure what tests if any will be undertaken, just think it is more follow-up to check on progress.

Monday, September 13, 2010

Geez, Another Week Bites The Dust

Not sure if it is a sign of improving health, but the last week seems to have flown by.

Optometrist visit went well.  They couldn't find any signs of diabetes, but did see some early indications of glaucoma.  That could be an issue in my 60's, but can and will be treated as and when it becomes more of an issue.

Had my visit from Brian to do some of the budget stuff.  That went well - great to get back into some real work and get the old grey matter chugging over again.

The small toothbrush worked a treat and it was great to clean my teeth, although the taste in the mouth took some time to normalise after it.  Because I need to use high fluoride toothpaste, you don't rinse out after you've cleaned, so it is a strange sensation.

With regards food, that took a back seat as the pain sensation in my throat has changed.  Up until recently the pain has been centralised - like a tickling sort of thing in the middle of my throat.  Now it is more widespread in that it feels like it is right across my throat.  Discomfort level is up  bit and the sensation is different, therefore presenting some issues.  Went to the after hours doctor on  Saturday just for safety and he couldn't find any secondary infections, so I'm now adopting the attitude that it is part of the overall healing process.

Sharon, the new community oncology nurse (replaces Wendie) came to introduce herself this morning.  We discussed where I was at pain wise and eating wise and she was happy with my progress.  Seems that the morphine level is about right given that I'm still needing a couple of top-ups.  Once I can eliminate those, they'll look at reducing the pump dosage - gradually.  She reiterated that the radiation treatment would still have been doing its stuff for a couple of weeks after the last session, so we should be 

So, this week will see a continued assault on eating, some more real work and hopefully a couple of trips out and about catching up with people (chauffeurs willing)

Monday, September 6, 2010

Weekend Highs And Lows

Saturday obviously dawned better for me than it did for the poor buggers in Christchurch.  Really helps to put your own issues in perspective.  Also made me think about how I'd get my meds, etc if the quake had been here in Wellington.

The weather was nice so we took the opportunity to get out and do a couple of things - haircut (much needed), drop some stuff off at the doctors (my fluid flow study), Mitre 10 for some screws and then up to the tavern for a brief socialise and in my cases a glass of lemonade.  Nice to see those people again after so long.

As an aside, I'm having to shave with more regularity now.  Still doesn't take long and area is quite limited, but all the same, every couple of days I need to shave.

Back home in time for meds, etc and pottered around for the afternoon while Ruth went off and did her own thing.

Survived being on my own until Ruth S returned around 5pm and we settled in for the night, which went rather smoothly.  If I'm late with my 4pm meds, it does have an impact on subsequent sessions, normally resulting in an extra top up along the way.  This was the case on Saturday.

Sunday was a bit of the same.  Out to do some things first thing, home for midday meds then on my tod until 4:30ish.   Ruth S came to hold the fort until Moira arrived a bit later on, but she'd rung to make sure I took my meds at 4pm.

For whatever reason, my throat just didn't settle yesterday afternoon and true to form it ended up as being a somewhat wild ride for the drugs last night.  Top up at around 6:30pm, another at 9pm (usually only one at 8pm), the 2am was replaced with a 4am and believe me I'm absolutely shattered today.  Sleep as it was was really disjointed, kept on feeling hot and couldn't get that temperature down (possibly not helped by the extra drug intake), all too frequent loo stops, etc.

The other point of note was last night, for the first time in this whole process, I broke down and cried.  The weight of it all finally broke down my defences and I let it all loose.  Fortunately both Ruth S and Moira , my guardian angels, were here to pick up the pieces (thanks heaps ladies).  I just needed to get out the pressures I am under, the frustration with the slow healing process (regardless of how well everyone says it is going), the whole amount of time this has taken and what we've all endured along the way.  From the outset, we said we'd beat this, and early indications are we have done that, but the cost has been bloody significant as well.  It wasn't a case of feeling sorry for myself, more a case of letting off steam I suppose that has been bottling up for goodness knows how long.

Needless to say, this also impacted on my restless night and the tears, etc also had an impact on my throat.

This morning I'm still a bit tender / emotional and not quite what I'd call in control, but we'll get there and I'll be back on course hopefully by the end of the day.

Aims for this week are optician tomorrow - test as part of the diabetes diagnosis, Brian is coming to see me on Wednesday to do my first bit of "real" work and apart from that it is finding various foods to try and exercise the swallow muscles required for eating.  Had some jelly on Friday with mixed success (again expected too much probably), had a mouthful of a banana smoothie on Friday night that didn't go down well at all, so this week could be things like mashed potato (KFC yuumm), scrambled eggs, dairy foods and more jelly, possibly sweetened with ice cream this time.  Secret to all of this - baby steps, and don't have high expectations it will "happen" at the first attempt.

Other thing to get on top of is the dental hygiene.  Been issues with getting the electric toothbrush in, so hopefully a child's size manual one will overcome that problem.

Friday, September 3, 2010

Belated Pinch And A Punch

Another month has rolled around and at times like this you sit back and appreciate just what has happened in the last few months.

I took the opportunity to read back over some of the old posts and as of today, I would have to say it seems we have turned the recovery corner.  Not saying we're on the home straight by any means, but even me in my pessimistic / anxious state can see how things have improved over the last week or so.

My throat is still sore, but I am drinking lemonade and water quite comfortably now.  If I've said this before sorry, but the texture difference between water and lemonade means they deliver different sensations when you drink them.  Water also doesn't seem to stay as cold for as long as the lemonade does - end effect is you need to make an adjustment when you go to drink them.

Pain seems to have stabilised to where the only morphine top ups are when I go to bed (to get me through 1st stint), followed by another one at 2am for the next stint.  Unless I've been overdoing things, then it is a whole new ball game.

Last night was I hope a turn for the better as well.  Normally I'm up every 2 hours to empty the bladder.  Last night it stretched out to 4ish and that meant more sleep, so I do feel better this morning.

Coughing of phlegm continues, but also at a much lower output.  Another positive step.

Have found that after feeds, meds, etc I can't just get up and move around.  To do so induces some unpleasant reactions, so now I just sit down for a few minutes, then go about my business.

What else.  My lips still get really dry.  We're applying Vitamin A cream a couple of times a day and that seems to help.  Of course don't do that overnight, so they dry out again.

My energy levels still tend to spike a bit and I'm still coming to terms with how to manage that without getting over-tired.  If I do push the limits, then things fall off the rails for a couple of days, so trying to avoid that happening as it undoes all the previous good work.  Have started logging into work and checking my emails, etc.  Baby steps I know, but at last feel like I can contribute something.  Hope to increase that over the next week or so, but again mindful of not overdoing it. 

My afternoon naps have also undergone a change.  I used to actually go to bed for a couple of hours and found I would wake up still feeling tired.  So now I snooze on the couch and that has a much better outcome.  Could be something to do with sitting more upright, but whatever the reason, when I wake up I actually have some new found energy, albeit small amounts.

So, there you are.  Pretty much up to date again.

Had an appointment with Tatiana, my GP on Wednesday.  More a case of bringing her up to date with where I was at and what I'm currently taking, etc.  No real issues there, but the issue of my swollen ankles was discussed.  Backing up a bit, the specialists have been asking if I have any chest pains or swollen legs/ankles and up until now the answer has been no.  Over the weekend I noticed my ankles were a bit swollen.  Mentioned this to Tatiana and it seems it is a side effect of the cisplatin.  It apparently screws around with the heart muscles a bit and this is one side effect.  I'm now keeping a record of my fluid throughput for 3 days and then have to get it to her for review.  In the meantime, I keep my feet elevated whenever possible/practicable.

Also had an appointment with the dietitian and speech therapy people on Wednesday afternoon and overall they are both happy.  Weight has gone up a couple of kg since I finished treatment and we're all happy about that.  Shirley the speech lady was happy with my swallow action and we talked at some length about getting me more into taking food orally.  While I managed a "massive" 1/4 ice cream slice, we obviously need to get beyond that and will start to experiment with other things like jelly, scrambled eggs, mashed potato, dairy foods and see just what we can achieve.  Again, agreed approach is baby steps with not overdoing it or setting me back by pushing the process along harder than I'm comfortable with.

(As a result of the busy Wednesday, Thursday was one of those days where we battled to get things back on track.  More top-ups were required, extra tired, etc)

Today is Heather's last day with me.  Heather is my home care nurse who has been with me for the last month and during that time I've certainly turned some corners.  Having her here for some of the scary bits has been really helpful and I'm not too proud to admit there were times there when I'm bloody glad someone with medical training was here for me.  Thanks for everything Heather.

Ciao for now