Friday, December 31, 2010

The New Normal

Being New Year's Eve, it seems appropriate to have a year in review piece.  Get yourself comfortable, this could be a long one.

OK, so 2010 is the year that has, to put not too finer point on it, changed my life.  It is really easy to just brush aside the first four months, but to some extent, they set the foundation for what 2010 could have been, and will hopefully form the foundation for what 2011 will be.  With the marriage break-up, I moved into my own home late March and started adjusting to my newly single life.  Was making good inroads I thought and was looking forward to things like walking and bike riding to keep me sane and obviously help with losing weight.

By late April, things were taking a turn for the worse.  Initial doctor's appointment, specialist appointment and pending procedures were setting the tone for what was to become two months of preparations/waiting, followed by two full-on months of medical hell, then four months of recovery.

Along the way, there were lots of changes, lessons, revelations, complications, diversions, frustrations and ultimately successes.  Overall, and this might sound strange, a wonderful learning experience, just a shame about the circumstances.

This blog has endeavoured to chronicle the journey, and while there are some gaps during the times I was hospitalised, I'm not going to revisit it again now.  What I do want to do is address what the "new" normal is for me.

While I entered this challenge with the positive mental attitude I believed was required to see me through it, I didn't really appreciate how my life was going to change. In reality I've come out the other side with a new attitude to life.  Yes, we all take our health for granted and yes, it really does sometimes take a major life-death event like this to make you take that required action to do something about it, but what would my situation have been had the cancer not surfaced?  I'd have been significantly overweight, probably a confirmed type 2 diabetes sufferer, but still convincing myself I was happy and OK with it all.  The diabetes would have forced some changes, but I know I'd have been doing the bare minimum to keep it under control.

Instead, I'm 24kg lighter, no longer at risk of diabetes and have learnt that just doing the minimum doesn't cut it.  I also learnt that when given a second chance, you don't waste it, you grab it with both hands and treasure it.  

While the dieticians want me to put on another 1/2 to 1kg before they remove Jake, rest assured I have no intention of retaining that extra.  Once they agree to remove the peg, I'll increase my exercise levels and cut down on some of the sweeter dietary items to get back to where I currently am.  After the best part of six months with only a liquid diet, my stomach has shrunk (I certainly get full on smaller size meals now) and have no desire to return to the large meals of old.  I didn't need them, it was just habit.

I've also got a different attitude towards people and problems.  I have never suffered fools easily and given what I've been through, my tolerance for people who portray a 'whoa-is-me" attitude over trivialities is now almost non-existent.  That said, where in the past I might discount someone/something quite arbitrarily, I now actually listen more and think through situations more before making a judgement/decision. 

What else has changed? I certainly have no desire for my work to totally dominate my life like it did before all of this.  I love my job and will always put in more than is required (it is a work ethic thing with me), but I also now appreciate the importance of getting some down time so your body gets a chance to recover and you get a chance to de-stress / unwind.

The importance of others really hit home this year as well.  The bravado going in about how I could look after myself was quickly dispelled and I became dependent on my now hopefully famous team.  It took a lot for me to accept I wasn't some super-hero that could do this on his own, but once I did, my outlook changed forever.  No more taking  people for granted, but instead understanding their importance and appreciating them (keeping in mind the bit about suffering fools above).  

My whole outlook going into 2011 is so different from how this year started and I do indeed now have a new normal. I'm healthy once again and with my new attitude/outlook hopefully a better, more balanced, person to be around.  Being given a chance to put the lessons learnt this year into action is indeed something I'm not taking for granted.  I'm one of the lucky ones to survive and think I owe it to everyone to make the most of the incredibly fortunate second chance I have been given. 

My New Year's Resolution?  Quite honestly, I don't have one.  I'm more than satisfied with "just" being alive and well.

So, in closing, a final 2010 thanks to everyone who has helped get me through all of this.  While some of them have been mentioned before on numerous occasions (family, friends, specialists, doctors, nurses, district nurses, my work family at all levels, cancer unit team, radiotherapy unit team, ambulance staff), some have largely operated under the radar, like Matt and his pharmacy team.  The volume of drugs that have come through these doors this year has been not only staggering, but also daunting and Matt and his team have quietly gone about their business ensuring I got what was needed on time, which in some cases was no mean feat.  

Here's looking forward to a 2011 we can all enjoy.

Thursday, December 30, 2010

Menu Update

As the year draws to a close, thought I'd give you a little update on my attempts to expand the diet choices.
  • Curry: (norm is mild butter chicken).  Having tried a couple over the last week or so, can report that the meat isn't an issue, but the rice is.  Can't cope with large quantities of rice and naan bread is off the menu.  Also, if they aren't honest about it being mild, the extra heat of the sauce makes it untenable.
  • Kebabs: As previously advised, can manage half of one.  Problem is really dealing with the 'bread". If concentrate on the meat and salad, get through more.  Have to be careful though that the meat they put in isn't too dry.
  • Salads: Being summer, seems appropriate to be having sliced ham, salad, etc.  Well, it seems thinly sliced meat isn't much fun.  Give me thick cut slices and things seem OK, but the thin ones, as is normal for supermarket delis, present unforeseen problems.  Some potential issues with the acidity of tomatoes, but will keep a watch on that.  Potato salad, cucumber, lettuce all seem fine.
  • Beer: Having broken the drought, am now enjoying the occasional beer.  Can only handle one stubbie at the moment and even that makes me tired and in need of a sleep.
  • Snack Foods:  Still finding my way around what I can consume.  The really small 18g packets of potato chips take some work but have become manageable. Pineapple lumps - one at a time only - are back on the menu, as are of course the M&Ms.  Jelly lollies still present some issues, but can be managed with perseverance.  Nuts are now back on the menu as well.  In the good old days, it was grab a handful, toss them in your mouth and chew/swallow.  Now the handful has become a "pinchful" of maybe 6 peanuts that take some considerable work and ultimately needs to be washed down.  I've now got a packet of scorched almonds in the cupboard to treat myself to, hopefully one day soon.
  • Pies: Tried my first pie the other day since all of this began.  Had to cut away a fair bit of the pastry, but managed it well.
  • General:  Really still just trying things to expand the diet.  Dinners still comprise meat and vege, but experimenting with different ways of cooking the meat to ensure it stays moist.
One other thing, the saliva substitute is an interesting product.  Seems to work - sometimes better than others - and is quite a strange sensation when you spray it on your tongue.  The success of the other stuff to try and promote the existing glands is harder to gauge, and hasn't been helped by me forgetting to take it 3 times daily.  Strange really, I've been so regimented with taking the maze of drugs for months, yet now I only have one to take, I forget it.  

Wednesday, December 22, 2010

Merry Christmas From the Gang of Seven

Firstly, the gang of seven is remaining alarmingly static.  I'd hoped to see a couple of them fall by the wayside by now, but with the exception of the oncology registrar, Bernard, they all still keep on coming along.

Anyhow, seems things are still good.  Everybody was very happy and it seems the scarring from the radiotherapy in my throat is either healing well, or has in fact healed already.  It was a bit hard to hear which as there were a couple of conversations going on at the time.  Either way, I'll take it.

Neck and jaw was feeling really good to the 3 who decided to have a feel - another tick in the box.

So, everything considered, another great result.  Next follow-up will be three months away, so they are starting to stretch these further apart as well.

There was some concern about the gastric bug induced weight loss and it seems that once they actually see me regain some of that weight, they'll approve having Jake taken out.  So my holiday target is to oblige.  I weighed myself before I went down today and it would appear I've managed to regain about half the weight I've lost over the last month.  If I keep pushing myself, getting the other half, plus a little more, back as well is quite achievable.

Now some exciting news and it is in the believe it or not category.  It seems there is no end to what they don't have a substitute for.

As part of the consultation, I asked if there was something to give me back my saliva glands.  After some further discussions, it seems there is something that mimics the saliva and I now have a prescription for it.  It may work, it may not, but worth a crack anyway.

But wait, there's more.  I also have a prescription for some spray/liquid (not sure what) that may (or not) stimulate the remaining saliva glands into working harder and/or possibly kick start some of the dormant ones.

Exciting times to be had over the next couple of weeks as I find out if the treatments have any impact.

And, we may have found the cause of the cursed gastric bug.  Seems the antibiotics they gave me for the pump infection issues can upset the stomach lining and cause diarrhoea.  The irony of it all.

One final good news item.  My dietary restrictions are now all off.  I am allowed whatever I want and can manage, so more experimenting to come.  Looks like butter chicken could be a starter in next day or two.  I managed 1/2 a kebab yesterday, so things are happening.

Honestly, I couldn't have asked for anything better in my Christmas stocking (well not anything I'd tell you lot about anyway).  Has been a really good day.

Tuesday, December 21, 2010

Au Naturale

Before you start getting excited, I'm referring here to the act of sleeping.

I'd decided to try sleeping on Friday night without the aid of any sleeping pills.  It worked just fine, as has each night since.

So, while I'm now free of drugs that stood in my way of having my first beer in oh so many months. it must be said that I don't actually feel like having one - what a quandary!  Free to sample, but no urge to.

I'm sure I'll overcome my "resistance"soon as it doesn't seem natural not to have a drink or two over the holidays.  Will have to watch the intake though as I'm sure my tolerance to alcohol will be considerably lower now.

Check-up with the gang of seven tomorrow - hopefully they'll agree to take Jake out.

Thursday, December 16, 2010

Some Observations

With the recover well and truly underway, here are some random observations/rants.

While the area under my neck is indeed largely a no-need-to-shave zone, the hair on my chin and my face seems to have decided to grow faster than it used to.  Or is it just because I've forgotten how fast it used to grow?  Either way, the daily shave is back on the agenda.

Wet shave is still my preferred option, but admit to being lazy and just using the electric shaver on most occasions as haven't regained the wet shave routine yet.

The Lump on My Neck:
Still there and likely to be there forever.  Gives me sort of a double chin ,that seems contrary to the "leaner" me as a result of the weight loss.

A small price to pay for successful treatment.

Despite eating seemingly all day, my weight has dropped another Kg.  Not sure the dietician is going to be happy with that,  but given I'm actually doing physical exertion type things now (as opposed to just blobbing around the house), I would expect to lose a bit of weight.  Am I clutching at straws, or right to take this stance?  Time (and dietician) will tell.

Good news is it has held stable for the last week though.

What a challenge to find out what the body will tolerate and can process.

While I'm now eating normal cuts of meat as opposed to just minced, still some issues with ensuring the meat is moist.  Have found 'dry' meat cause issues.  So what starts out hot and moist, can become a problem as it starts to cool and dry out.  Pork cuts seems worse for this than do their beef equivalent.

Chicken is a real challenge.  The texture (quite stringy effectively) is weird and I struggle with it.  Even nuggets are somewhat of a mission.  Popcorn chicken works (see I've managed to reintroduce KFC), but is a lot of work and only in small quantities that represent a snack, not a meal.

Breakfast now normally consists of weet-bix, which has replaced the previous norm of porridge.  Weet-bix is a lot quicker and I've found just as satisfying/filling.  Porridge now a weekend "treat".

Instant noodles used to be my lunch mainstay, but they have started to cause the throat some processing issues as well.  Interestingly, the beef ones are worse than the chicken ones, yet only difference should be the flavour sachet.  Weird but true.  To the absolute shock of those that know me, lunches now consist of macaroni cheese (true), other single serve pasta meals, omelettes or scrambled eggs.

Dinner now consists of an attempted "meat and 3 vege" each night.  Some nights becomes a bit of a mission, especially if I'm feeling a bit tired, but I understand the need and in all fairness, seldom come away not feeling full, so must be doing something right.

Local Roasts have proven a good "easy fix" as the food remains moist to the last, so is easy for my system to handle.

Dessert favourites now are Aunt Betty's Steamed Puddings.  They come in a number of different varieties, but didn't enjoy the after dinner mint one.  35 seconds in the microwave and some ice-cream = bloody marvellous.

Can now eat potato chips in small quantities (they gunk up in my mouth as no saliva to help ease them down) and despite my diet being meant to exclude breads, can manage single pieces of sour dough bread - providing it is toasted and I'm prepared to spend the 10-15 minutes worth of effort to help ease it down.  I kid you not, it is a real commitment to eat bread.

Another side effect of this eating lark - the dishwasher needs to be turned on every 3 days or so to deal to the dishes.  It had been through a period of some 4-5 months where it was turned on maybe once every 2-3 weeks, now it is earning its way.

One thing I'm meant to be having is fortisip straight out of the bottle, or as part of a milkshake.  All I can say is thank goodness I didn't have to rely on drinking this stuff during my recovery, it tastes terrible straight out of the bottle and the milkshake version was equally unpalatable.  In fairness, haven't tried all the flavours yet, but not holding out much hope that they will have made one particular flavour nice.

Suppose if my taste-buds hadn't recovered I'd be none the wiser, but they have thankfully and once again I can be picky.

Thanks Jake for taking the hit on all those fortisips over the months for me. 

Seems to be less of an issue now.  Have found some pills from the health shop that work and I'm pleased to be off the potentially addictive ones given to me by Tatiana.

Sleep is still somewhat "disturbed", but I don't wake up feeling tired, so I'm obviously getting enough combined sleep to satisfy the body.

Intend to try a pill free sleep tomorrow night - if it fails, have weekend to recover with the aid of pills.

One potential "benefit" of the non-prescribed pills is I can now technically drink alcohol.  Figure given the weight loss, etc, my threshold will be considerably lower and intend to try my first beer from the safety of my own home.  Might be part of the celebration of my first night's sleep without any pills? 

Early Mornings:
When I wake up, my throat is really dry, despite my sipping water during the night.  I used to be sipping almost non-stop (2 x 750ml of water a night, plus the resultant toilet stops to interrupt sleep), whereas now I seem to stop sipping around midnight and only consume around 500ml a night.

So while I get more sleep, I have to deal with a dry throat in the morning.  Water is the  preferred initial "treatment", but the other side effect seems to be a fair bit of phlegm builds up overnight now, so that also has to be moved and invariably it becomes a vicious cycle. Drink to ease the throat, which loosens the phlegm, that by shifting in turn aggravates the throat again.  Gotta love it.

Solution seems to be drink water for a while, then switch to soft drink for a while.  However, after maybe 2 glasses of soft drink, have to revert to water.  Why?  Well, without the saliva, the sweet syrupy taste of the soft drink remains and means I'm trying to get rid of that, making the lips and throat work overtime, and the cycle starts again.  Reverting to water seems to provide some sort of balance.

Does it ever go away?  No, it just settles to a tolerable/manageable level.

Previous Blog Posts:
I sat down and started reading the posts from scratch the other day. Got as far through as posting #26.

Was really interesting (I'd forgotten some stuff) and quite an emotional exercise as I once again faced the early stages of my battle.  At some stage I will pick up where I left off, but think it is going to be one of those things I do when I'm in the right head space.

Seems to be a non-event now.  Last appointment has everything at acceptable levels and apparently my cholesterol level is now really good.

Given my diet consists of so much high fat and sugary stuff (only doing what I'm told), that was quite amazing, but I'll take it thanks.

In it's own strange way, the cancer has had benefits - my weight loss has helped take me out of the type 2 diabetes danger zone.  Not the preferred method of achieving this though obviously.

Time to go and sort out some lunch now.

Wednesday, December 8, 2010

A Week Can Seem Like A Lifetime

It is one of those things you can never quite fathom.  Where has the last week gone?  We put up the normal responses and these days the common one seems to be that the pace of life is such that we don't have time to ourselves to stop and think.

To some degree, I agree with that, but since my illness, I tend to look at things slightly differently - every day is now actually rather precious and a bonus.  So, I'm working from home at the moment and therefore somewhat masked from this cursed pace of life argument, yet I still struggle to account for the last two or three days, let alone the last seven of them.

Is there a solution to this, or does it really matter?  I think it does as we owe it to ourselves to ensure we have a series of checks and balances in our lives that help to ensure our sanity, happiness and longevity (something else I no longer take for granted).  I'm sure if I had a pre-packaged solution, I'd be very rich about now, although not necessarily happy.

So why raise this if I don't have an answer.  As we enter the festive season, it gives us an opportunity to thank and/or acknowledge those around us for simply being there.  I believe that our extended circle of family and friends are instrumental in helping us keep our balance in life.  Bouncing things off them and sharing in their problems helps us to find outlets for some of our own issues.  Equally, their support makes some of our own serious issues seem manageable.  We're all living day by day and as the recent tragedy at Pike River once again showed, you never know when today will be your last.

To a large extent, I've faced many demons this year, and I know that thanks to my "circle of influence", I've been one of the lucky ones to come out the other side.  Without this unquestioning support, my battle would have been an awful lot more daunting.  Without their humour, it would have been easy to feel very sorry for myself and surrender, as opposed to maintaining the all important PMA. We've all watched how a country got behind the Pike River families, but do we ever stop to think how lucky we are ourselves with our own support networks?

All I ask is we take a moment to think about those nearest and dearest to us.  I've learned a number of things this year and the one thing that sticks most in my mind is the way people just rise to a challenge and offer their help and support without question.  I don't think I'm alone here.  None of us could survive without our support crews, so let's make sure we take the time to acknowledge it to both ourselves and them.  As I've learnt, you never know when you're going to need it.

One thing I do know that has happened this week, is my diet has changed.  While minced meat was the previous preferred option, I now find that it sticks in my throat easily because it is effectively such small pieces.  so, I now cook/eat normal "cuts" of meat and cut it up and chew it normally.  This doesn't seem to stick in my throat as much, but it still takes a long time to finish a meal.

I've also found a cure to my chocolate cravings - M&M's.  They're small enough that a quick bite is sufficient to make them manageable and after 4 or so, I'm feeling satisfied and the small quantity means they don't gum up in my mouth.

Wednesday, December 1, 2010

Worth A Crack

I've been taking the sleeping pills for just over a week now and decided I'd try to sleep last night without taking one.

The result could be best described as a failure - I got 3 hours sleep from 4am and a little broken sleep before that.  So, today I'll be taking things quietly and trying to have a nap at some stage.  That in itself should prove exciting as I've been unsuccessful in previous attempts to grab a nap during the day.

Back to the pills tonight.  Because they have worked so well, I'd almost forgotten what it felt like to try and function on so little sleep.

On another note, my sister Faye came for a visit over the weekend.  She lives in Brisbane, so has been somewhat of an "interested observer" with regards to my trials and successes over the months.  It was great to catch up with her and she has now seen first hand that I'm on the mend.  The weekend was busy (she arrived early Friday morning and flew out again early Monday morning) and quite tiring, but worth it.  Wellington showcased itself well with such great weather and it was an ideal opportunity for a Sunday cruise in the Vette with the roofs off.  Thanks to Ruth S for taking on the early morning airport runs.

Man, I'm tired.  Today is going to be tough.

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.


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.


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.