Belated Update - I Gotta Wear Shades!

Wow! It's been a month since I put pen to paper.

Quick update.  I'm much improved, starting work at Craigburn next week - two days a week.  I will be all clear to start at the hire the week after.

I find out mid September whether they destroyed it all or not.

I had my PEG tube removed last week, so that is a big step toward my new normal.

I'm getting down to the business send of my recovery, where we start to get an idea of what symptoms will be part of my 'new' normal - e.g. life-long.  It's funny because when these possible chronic symptoms were explained early on, in the context of death looming, they were so insignificant.  As you jump the hurdles and the darkness is behind you a bit, these once insignificant symptoms start obscuring the light at the end of the tunnel, just a bit.

The remaining symptoms are:

Tinnitus: This is constant, but pretty low level and I would trade keeping this forever to lose a few other symptoms, if that's the way this game was played.  I've been in bands to some extend most of my life, so I should have tinnitus anyway.  Plus there was that Eskimo Joe concert - sorry in joke for the Cheeseworld fans.

Taste: This has come back to 80% I reckon.  If it doesn't get better, I could live with it.  I have enjoyed meals in the last fortnight, which I thought I might never do again and I can drink, and enjoy beer now.  Still nor getting that really sweet sensation of fruit or desserts - meh!

Mouth Dryness: Probably one of the concerning symptoms.  You do hear of people who never recover full salivary function.  I spend a fair bit of my day with 'desert mouth', which makes eating dry food, such as sandwiches really difficult and affects my voice.  I will probably not be able to maintain 15 minute monologues, which will be both a welcome relief to my students, but also a disappointment as we may stay on course for the day.  The dryness causes some stertorous noises in the night and maybe also because of my neck swelling, some sleep apnoea. This symptom also has a more serious side as it causes dental complications into the future.  I have re-started the acupuncture to stimulate the salivary glands, so I look forward to getting over this one.

Weight-loss:  I lost about 10kg in the end, getting down to about 65kg.  I put on about 5kg which allowed me to have my PEG removed.  I have not been able to break the 71kg mark for about a month.  I assume the immune system is still cranking up my metabolism.  Hopefully that winds down over next few weeks and I can get back to my 75kg 'rig'.  My appetite is still not back to normal.  I have some nausea and never really find myself feeling hungry.

Throat Pain: This is nearly gone, but just lingers in one area and fires up with certain foods.  Tomato or capsicum based meals. Some spice heat causes issues with my throat.  Generally though  it is pretty good.

Neck Swelling: This one is purely about vanity.  My lymph system has been annihilated around my neck region, so there is poor drainage of the interstitial fluid, leaving me with a swollen neck and jaw area.  So whilst I am 5kg below my normal weight, my face looks like I've been grazing in a good paddock.  When you add the fact that I have no facial hair below my ear line, and am left with just a stubble shadow moustache, it all comes together to create a pretty special look.  But as I said, this issue is all about vanity, so no sympathy from Carly Simon for this one!  I am doing lymph drainage massage to try and re-establish the flow before it becomes a chronic issue.

I think that's it for my symptoms.

I have been keeping busy, doing some work around the house, trying to weld, doing some paperwork for Alison's growing business and for Blackwood hire, and starting to hover around the teaching team to get my pedagogical mojo going again.

So all in all - 'I gotta wear shades!'

We Are Sailing!

Three weeks ago, we jumped into the tinny and made our escape from the dark gloomy island.  With a head wind and choppy waters working against us, the little two stroke engine has been non-stop full-throttle, as we try and get as much distance between us and that shitty place.

Yes it's been about three weeks since I had my last RT, and a couple of weeks since I posted.  I think I have enjoyed being relieved of all (most of) the routines of the last few months, so I dropped as much as I could, including the blog.

Last post, I was pretty down and I was having a hard time.

About a week ago, I climbed a step ladder toward my 'new normal'.  My tongue ulcers cleared up and my nausea dialled down a bit.  Also, my all-night coughing - expectorating - reduced to a few interruptions. So within a few days, I could eat and sleep - what a difference that makes to your life (and the lives of the ones around you)!

So for the last four days or so I have felt like a normal person again.  No afternoon nap, no being tied to the recliner as I feed myself through my PEG tube, no groggy-ness and no medication for nausea or pain.

This might have been the result the nautical miles we'd clocked up in the tinny, but more likely, it was because of a short stay at Middleton last week.  It was so nice to get out of the routine and into a new environment.  So nice to be out on the beach with the fresh breeze clearing out the cobwebs.  Ned had a mate down there, and between them they spent a fair bit of that time in the water.  I was with them on the beach, but I had my sneakers on.  I didn't mind, it was so nice to be out and about in the elements.  A big thanks to J & A for the offer of the house, and to Alison, who as per usual, fore-saw how valuable this little break would be, and made the effort to lock in the dates and get it all sorted, whilst I was most likely catatonic in my recliner.

Back at home, I am still dealing with some salivary issues (dryness) and reduced taste.  Though on both accounts there have been improvements.  I was offered a soda water with cordial the other day - I told my mate not to waste the cordial, but he put it in anyway - blow me down if I couldn't taste it as sweet as ever.  Turns out it was 'diet' cordial, so it was sweetened with stevia.  I haven't done the follow up research or testing on this, but I assume stevia activates the sensation of sweetness along a different pathway to that taken by sugar. More subtle tastes are showing themselves but salt and sugar are still not detected.

My PEG tube is really just a nuisance now.  But until I gain some weight and keep it on for a while, I will struggle to get the go ahead I need from the speechy and dietitian to have it removed.  I have an appointment next Thursday with the two of them and I will be making a case, with a detailed food diary, to have the bloody thing removed.  I have put on a few kilos in the last four days so hopefully I can get close to my starting weight before that meeting.

As far as the cancer is concerned, the battle at the cellular level is still being fought.  The cancer cells, with their damaged DNA, can apparently carry on for quite a while and only fall to pieces when they try to divide.  So they don't bother with testing me until three months after treatment (10th September).  I can report that there is no palpable lump, so that's a good start.

So back to my opening analogy, I guess we've upgraded the tinny to a catamaran and the headwind is now a zephyr in our sails.  I can still see the island in the distance behind us. We're not speeding away from it, but there's no smell of two-stroke fumes, no noise pollution and we're heading in the right direction, like Simon Le Bon and the boys in 'Rio'.

A wind break, a packet of chips and a little fire on the beach - sorted!

Before hitting entering the waters at Boomer Beach, Ned will always takes a moment to pay due reverence, firstly to the Boomer gods, and then to his his pink boogie board. Dom does not see the sense in this ritual - he will pay the price.  Maybe not this day, but the Boomer gods will have their way.

Celebrating the taste of stevia!

False Summits!

Last Saturday I finished my treatment! Whoo-hoo!  But the view from this false summit was not so great.

To switch analogies..

I've run the last lap a few times now but I keep getting the 'final bell' instead of the chequered flag!

A bit of a misrepresentation.  I was clearly advised that once treatment had ended, I would spend 7-10 days getting worse, due to the accumulated effects of the treatments.  I sort of waved that off a bit, thinking that the joy of not being treated anymore would override any deterioration.  So it's a misrepresentation from me to claim that the finish line is being tampered with, it's not.

I'm in Week 8.  It's been five days since I finished my last radiotherapy and ten days since my last chemotherapy.  I feel like the chemo is pretty much out of me.  I stopped feeling nauseous a few days ago, although I haven't got an appetite, I can now be in the same room as most foods.

The radiotherapy is another thing.  Externally my peeling skin has repaired and is now just dry and leathery, but not giving me any pain.  Internally is a bit of a different story.  I have a line of ulcers running down the right side of my tongue and the back of my throat is also ulcerated.  These have been pretty stable the last few days, so I'm hoping it's getting close to the mending cycle.  This ulceration issue is exacerbated by my ongoing salivary problem.  Compared to the average head and neck cancer patient, I have faired quite well in terms of my saliva, but I still produce a very viscous mucous.  Swallowing this is very painful and it also produces a persistent cough, which also creates a lot of pain.  This has been keeping me (and Alison) up most nights lately.  I am glad to say that last night was a lot better, so hopefully another sign that I am on the mend.

The other thing constantly looming over my head, probably my main raincloud when I stop and think about it, is weight loss.  I just can not stabilise it.  The solution should be simple, use my PEG tube to get my nutrition.  But the stuff you put in gives me reflux if I put it in too quickly and it makes my saliva frothy and gives me a sense of throat swelling.  I really don't like it.  If I put it in slow enough it's not so bad, but I really have to dedicate the whole day to feeding if I'm going to get my calories that way.  I have tried eating through the nausea..bwa bwaooow, I vomited about 4 hours of feeding up in a matter of seconds.  I'm really counting on getting my calories from normal eating in the next couple of days because I am fast approaching 65kg.  Today I ate breakfast, baked beans and an egg, and lunch, beef pho and am planning on eating dinner. Hopefully I tally up enough calories for the day in that lot, I'm sure my digestive system will appreciate some normal food coming through the system.

With all my health professionals panicking about my weight loss, I have found solace in the www.heartfoundation.org.au website BMI calculator.  I put in all this complex data (height and weight) and it gives me a reassuring tick of approval.  I was in fact only a kilo or two from being overweight pre-cancer and now I can still afford to lose a few kilos..phew pressure is off - thank you  BMI.

Going back a bit, Week 6 and Week 7 were actually just really tedious.  Going through the daily routine over and over again, one foot in front of the other, being knackered at the end of the day despite feeling like you'd 'dun nought'.  I think that's why I hadn't blogged, I really didn't want to be too negative nor did I want to be seeking out positives and making a big deal of them when the reality was I just wasn't feeling positive.  I was coping, and having a laugh when I could, but basically, I was friggin' over it. Of course it was always easy enough to find the person doing it tougher than I was, and that change of mindset from being 'friggin' over it' to being 'friggin' grateful', does really help as long as you arrive at it on your own and in a genuine way.

Week 6 also saw a bit of a highlight, with the Dads & Lads - Worlds Greatest Shave Night.  Most people reading this were probably there (thank you) so I don't need to go into too much detail.  The night was a great success, thanks to all the support I received.  Heads got shaved, kind and inspiring words were spoken - I was particularly blown away by Ned's speech, but it was also great to have Kylie from the Leukaemia Foundation explain how all this money ($11,400) would actually change lives.  Personally, the couple of days planning and then actually being at the night, totally took it out of me.  I was stuffed for the next couple of days.

So there's a bit of a wrap up of the last few weeks.

Pretty messy and disorganised, and also a bit negative.

In the next few months I guess I am going to get an idea of what changes might be for life, and that's a bit scary.

One foot in front of the other though, get over these ulcers and start eating.

Heading in for my last Radiotherapy

The RTs hand me over my locating mask as a farewell present

Week 5 - I Can See the Stadium!

Well I got through the Chemo week (Week 4) a lot smoother than first week.  Thank goodness!

Week 5 was fairly unremarkable.  My taste is completely shot, except for seafood, I seem to be able to get sushi (fresh salmon) down - no point in wasting the soy sauce on it though.  I have been a bit queasy all week, so struggling to eat and drink most things.  This has resulted in me loosing a few kilos again.

So from the minute I wake up it's all about meeting my KPIs - 2L of fluid and 5 meals (2 of which I have been using my PEG for).  If I sleep in, because I have been up half the night coughing, then I start well behind the 8-ball.

Coughing.  Yes, as my saliva production is tampered with, I get a build up in the back of my throat which I spend half the night expectorating.  I wanted to go into a whole lot more detail about the complex make-up of saliva etc. but have tried, possibly unsuccessfully, to keep it not too gross.  With regard to saliva, I am actually having a great run with it.  All my health professionals are blown away by how well my mouth is holding up and how well I am still able to 'manage' (not taste or 'stomach' it) food.  I think this has a lot to do with my saliva maintaining its normal viscosity. which I can pretty confidently say is down to the acupuncture (thanks Sean), constant lolly sucking (thanks Sean) and constant bi-carb and salt mouth washes.  Sorry to get a bit detailed about my mouth there, but it is a major component of my treatment side effects, both temporary and possibly long term, so its a big deal to me.

Taste.  I wanted to spend a minute talking about taste, because it is so strange not having it.  I am having this rant, not as a whinge but more trying to share how strange it is and how valuable it is.  So I mentioned I had lost the ability to taste sweet things.  This is pretty much all sweet things.  Anything with sugar in it either is nothing or has a bitter after taste.  I shared an orange with Alison, I watched her savouring each segment of her half, with her eyes half closed in a dreamy state of taste-related bliss.  Meanwhile, I was struggling through my sacks of waxy water, bracing myself for the burst of gross mouth-feel every time I took a bite. Wow! I am also now unable to taste salt.  I tried a yiros the other day and was getting nothing chwing through the delicious smelling lamb - yes I can smell - like it was old piece of chewy. Actually, that sums up most of my eating.  Chewing on a tasteless wad of old chewy, then having to manage it into a bolus and swallow it.  Blaa.  Anyhow, with regard to the yiros, I got the salt out and put a teaspoon on a small mouthful sized area. Nothing!

Things I can taste are some peripheral tastes, seafood, as I mentioned, without the salt, I tasted the peripheral flavours of fried corn (in potato fritters), the cloves and maybe nutmeg in a spicy biscuit and an egg yolk.

I can not wait to have my taste back, in whatever form it comes back.  The reports I am getting indicate that I should get most of the range back, but some things just do not work.  Coffee and red wine are commonly mentioned as not being palatable after treatment - I can live without them.

I will be so appreciative to put food in my mouth, and have my visual and smell-based expectations  met, even if only to some degree.  All I feel like doing is listing foods.  I feel like someone who has been deprived of food for some time, all I want to do is talk about it.  I was already pretty good at savouring my food, over the last few years (I was a bit of a hoover-er in my younger days), but I know I am going to be a very mindful eater in my post-treatment days.  I urge you to savour every mouthful for the rest of the day!

Well I am about to start Week 6.  Chemo in Week 7 will be my last week of treatment.  After that reports are I will take a 2-4 weeks to get over the accumulated affects of the treatment.  I can't feel my tumour at all, but they won't do a scan for three months after treatment finishes.

Either way, the finish line is approaching.  I can't hear the cheering, but up in the distance I can see the stadium. All I want to do is look at that stadium and think about my life as I walk out of it, my mini-marathon complete.  But right now, I need to focus on each step, focus on holding my form, even though I just want to let my head go floppy and my arms flail about, no, two lites of water, five meals, mouth wash four times, suck on a lolly if not eating, flush and clean PEG, RT appointment, exercise, moisturise neck...keep doing my daily tasks correctly, I'll be in that stadium doing my final lap before I know it!

Week 3-4 Update - with possible daughter hack

The lowdown is - my favourite child is Bugsey aka. Bridget. She constantly uses initiative when helping out around the house, doesn't complain when asked to do a job, completes her homework and receives hard-earned B grades (with the rare b+). She fills in her homework wall and consistently maintains a neat room and workspace for all the homework she does. Now most importantly, she is the best footy player. To think she's only been at it for a year and a bit now, she goes in hard, and comes out with great results (usually with a b-e-a-utiful drop punt out of the tackle zone), then she follows it up and gets right back into it. Man, she's going places. Even more importantly, she has a brilliant sense of humour. Bridget nails execution of jokes, and is constantly cheering everyone up who is around her. You could definitely say she's my daughter. Now I wouldn't usually go this far, but many believe (including me) that she is possibly the next Jim Carey, Will Ferrel, Ricky Gervais, the list goes on. Also, she is the best checkout worker at Woolies, with that cheery smile and brilliant topics for chats (only if she can read that the customer wants a chat), I do not hesitate to say that I'm proud when I go though her co-workers register and get to say "DO you know Bridget, yeah well she is my daughter".
__________________________

I thought the best parental response to the above was to actually post it, and let the thousands of readers be exposed to what a dork she is.

Well I'm well into Week Four, having let Week Three's post slip a bit.

Week Three was quite unremarkable.  I am becoming less aware of my PEG site as the wound heals, so I am able to use my stomach muscles with less caution.  It is amazing how restrictive it is, not being able to brace your core muscles to do everyday tasks. 

A bit of a highlight was that Bridget's footy team had their first win in a season and a half.  It was a nail-biter too.  I was so glad to be fit enough to head out to Mt Barker on my own, and be, for the official record, the coach.  This is only because I can't be the runner this season, so the coach is listed as the runner and I hold the magnetic board and make a few suggestions.  The only rather large downer was that Bridget missed the game because of work - damn!

My lack of taste has really set in.  I do not have a 'sweet' sense at the moment.  It is very strange, I am very sick of it already, biting into a custard tart, or a juicy pear and just getting nothing.  Water is very hard to take.  It feels waxy and has an unpleasant taste. Alison bought numerous cordials for me to try and find a mix, as I need to be drinking two litres a day.  After three cordial flavours, lemon juice and many combinations of these, I have settled on cups of weak black tea and Bickford's brown lime (or cold tea) in the drink bottle.

But in general I felt great in Week Three, I maintained my weight at just above 74kg and ate, slept and was able to do most activities during the day.

Week Four is a chemo week.  The second of my three rounds of chemo, so it was with mixed feelings that I climbed the stairs with Alison to the Cancer Clinic.  I was of course not keen on being loaded up with a cell-busting chemical, that would take me back to where I was three weeks ago, but at the same time I was keen to get onto that Week Four sway bridge so that I could get over to the other side with only one more Chemo-chasm to cross.

We had our initial meeting with the oncology registrar.  She hadn't had a chance to peruse my notes - for which I would have been happy to wait another 10 minutes - but she was very professional and certainly had the upper hand when we realised that I hadn't done my homework.  My one job, apart from my daily rituals, was to get a blood test the week before.  It turned out not to be too much of a drama, but it did cause some delay.  The two infusion nurses tending me were lovely about it, little did they know that I had more dramas for the whole infusion team up my sleeve!

I lay back in the recliner as the nurse struggled to get a vein.  Two strikes and you have to forfeit, so it was down to my other nurse to get the job done, which she did.  First they had to take bloods - oops - then they set up my fluids, as by the time the blood results came back, they would still be going, so worst case scenario, I'd be walking out with a litre of fluid - I'll take that!

As it was the bloods were fine.  Alison went of to tidy up some loose ends at work and I started to get drowsy, having had my new nausea medication, olanzapine, which does the opposite to the dexamethasone.  Actually I am still taking the dex but only a half dose, so the olanzapine is winning this battle.

There are lots of toilet runs during chemo - for me anyway.  They load you up with about three litres of fluid over the four hours, so it's no wonder the the whizz rate increases.  Well, on about journey number three to the toilet, wheeling along my clumsy, top-heavy dance partner (fluid hanger), we had a bit of an incident. I managed the toilet affair with grace, and was back in the main area when I reached for the hand gel on the wall.  My infusion plumbing got caught and I ripped the whole cannula out of my arm spraying cytotoxic cisplatin everywhere, the cannula relieved of its back-pressure came to life whipping back and forward, spraying the other infusees and nurses indiscriminately like and angry cobra.  Well it didn't do that, but if you saw the scene 10 minutes later you would have thought so!  It actually just dripped on the ground and a nurse rushed, at a safe speed, over and turned the pump off.  I figured this was about a four hand-towel spill, maybe worth a small 'Shamwow'. Boy was I wrong.  It was all hands on deck.  This is not a Drill, I repeat this is not a Drill!  A nurse commented that she hadn't seen a spill like tis in her 20 years - oops!  The toilet entrance soon looked like a scene from a movie, 4-5 nurses fully kitted out in PPE, reading the manual as they lay spill gel and a containment boom around the site.  My nurses were re-assuring me that it was no big deal, but of course I wished my recliner would absorb me as I watched all the nurses being put at risk to exposure and being taken away from their own patients because of my bungle.  It was easily two hours before the energy around that zone finally dwindled and the PSA was left to give the area a final clean, before it being declared open to toilet traffic once again.

I am pretty sure that every nurse involved in that clean-up made an effort to catch my eye in the next few hours, and either verbally or non-verbally let me know that it was all part of the job.  I now have another reason to be nervous about my next infusion - must remember -
Do not spray cytotoxic chemical at people
Do not spray cytotoxic chemical at people
Do not spray cytotoxic chemical at people
Do not spray cytotoxic chemical at people
Do not spray cytotoxic chemical at people

That should do it.

So far this chemo week has been a joke - call yourself a f'n 'chemo week'?

O.K, it hasn't been fun.  But the adjustments that my Clinical Practice Consultant made, have done wonders.  The legendary Michael F, has the title CPC, but he also comes under the umbrella-ella of the wonderful bunch of nurse practitioners.  Where a specialist may not have elicited all the information from my first chemo week, Michael, with his nursing background, carefully debriefed me after the first week to 'make sure the next one is easier on you'.  He made the change to my meds, which I believe, has been the main reason for me having an easier week - thanks mate!

Today marks the halfway point in terms of actual RT appointments, I'm 18/35ths of the way through.  Of course I know the shape of this course, so I know that the first half was walking from Glynburn Rd, to the bottom of the waterfall, the second half is the climb to Mt Lofty, once I reach the peak (35th RT appointment), I still need to get over the last chemo and the built up radiation. 

Still it's a milestone and I'm taking it!

You little beauty!

Warming my arms up to make it easier to get a vein.  Hard to stay awake with sedatives and warmed blankets wrapping both arms!

This is NOT a DRILL! I repeat: This is NOT a DRILL!

Note the manual in the bosses arms

I'm up for another wee, but they haven't got my last wee incident cleaned up

Wishing the recliner would fully engulf me 

Start of Week 4

The wonderful RTs fitting my mask

Being Zapped!

This is not hat hair - this is RT Locating Mask hair!

Week Two - Meet One of the Team

So I'm through my second week of the 7-10 week haul.  The second week is NOT a chemoT week.  The second week is good!

I mentioned previously that I came good on the Saturday (12 May), and that form has stuck with me the whole week, through to today (Sunday 20 May).  The nausea and resulting lack of eating caused me to lose a fair bit of weight over the chemoT week, about 4-5kg.  I now have chicken legs and no butt.  I wear a belt, so the 'no butt' is not a problem, and frankly I won't miss the wolf whistles every time I wear shorts, so the chicken legs can stay.
I have been eating like a teenage boy on a growth spurt, and have used my PEG tube 3-4 times this week to really make sure my weight stabilises.  I've managed to claw back a few kilos from my metabolism, which I think is racing along in a justifiable panic about the toxins and radiation attacking my body.

The week-daily radioT is starting to build up and cause some symptoms, with some mouth ulcers, mild throat pain, reduced salivary function and adjusted taste, taking some of the joy out of eating.  On the other hand, it is also building up and opening a can of 'whip-ass' on my neck tumours, which I feel are down below the size they were when I first detected them.  So that is encouraging.

Highlights this week include some awesome soup donations, sleeping through the night and my father and sister replacing my rented recliner, which you sat 'on', with my parents old recliner which, if you get too close, reaches out, grabs you and gives you a big hug.

This week I introduce my new single-episode segment; 'Meet The Team'.  I have my awesome team of medicos, but I also have my self-assigned support team.  Today I would like to introduce you to Sean Bushby from The Physio Studio at Goodwood. When I asked my Radiation Oncologist if there were any complementary therapies patients had used, which he felt had some anecdotal merit, regardless of any scientific evidence, he referred me to Sean.  Sean is a physiotherapist with a holistic approach to his discipline.  He also has advanced training in dry-needling. 

I was referred to Sean, because over the last 10 years he has been working with head and neck cancer patients to minimise, or reverse the effects of the radioT on their salivary glands.  He cautiously steps beyond the localised focus of dry-needling and into the realm of acupuncture, needling points in my ear and pointer finger in order to stimulate my salivary glands.  Most of Sean's patients to date, have come to him post radioT, looking for reversal of symptoms. and he has had some wins there.  Over the last six months, and in my case, we are looking to stimulate function weekly, through the course of the radioT and then work on reversing any reduced production in the weeks following treatment.  I have had some success with dry-needling for other injuries and I feel very lucky to have come across Sean and the team at The Physio Studio.

So next week is another chemoT-free week, and a chance to try and get back to my starting weight.  Just to add to the load on my Primary Support Team (which is my formal name for Alison), Ned is having surgery on Tuesday, to correct a small hole (fistula) in his palate.  He will be in Women's & Children's overnight and will then have to prise me off of the recliner for a few days of convalescence.  All he really cares about is that he should only miss one week of footy, with the added bonus of not being able to practice his trombone for a month.  So looking forward to some shared time on the couch with the little fella - he is studying WWI, so there may be some war movies lined up.

Bring on Week Three!

Me and my second-favourite RT Nurse Michelle - c'mon I have known Sammy for a while!

 If a man eats a really oily focaccia, but no one is there to see him eat it, does it add calories? 

(Hence the photo evidence).

 Thanks for the soup! With very thickly buttered toast!

 Sean Bushby - like Pavlov's dog, I now only have to say his name.

Now that's a recliner - good luck getting me out of this Nedder!

Week One

Sorry about the break.
I'm going to wind back the descriptive, discursive style - if I can.  Just to get the message out.

Before Week One (Monday 7 May).  I had an emergency visit over the weekend due to PEG infection.  Wow! Did I receive A Grade care! (note  = genuine sentiment).

As an added bonus, it appears I had been harbouring a post-op infection for the last fortnight, from the tonsillectomy.  All the 'Sneakers On The Beach' ho-ha, was nothing to do with cancer.  It was just a big bloody infection. This had caused my tumour (lymph node) to get painful and HUGE, so we had become quite stressed about not starting the week before, as it seemed every day was making a difference to my state.  It was, I was swelling up and becoming lethargic.  I had night sweats, but no temperature - I was on constant paracetamol.  I just thought this was cancer baby.

Friday night I was put on antibiotics for my PEG infection.  I woke up Saturday morning a new man.  My tumour was back to a hand-full and painless, I was not lethargic, I had not had night sweats.  Oh my lawrd!  We realised what must have been the case and celebrated the new me.

Monday came and it was time to start.  I was well and truly ready to get this going.

It was ChemoT first.  The staff were awesome, the feeling in the place was positive, fresh and new.  That really mattered.  A comfy recliner, a book, TV (no Berts), Blog to do (didn't get to it) and four hours to kill, while they boosted my fluids, poisoned my cancer cells and then boosted my fluids again.  The time went quickly and between a few meetings with health professionals, Alison's company and fair few trips to the toilet holding my fluids stand, like you see in the movies, I didn't get time to touch my laptop, book or TV (actually on reflection I did spend about 45 minutes - 3 pages - trying to finish reading Moby Dick again, I've been working through it for about six years now).

I was all dosed up and headed down for my first RadioT.  I knew it was going to be quick and painless.  I had a meeting with my RT nurse, who was by chance my old friend, the lovely Sammy Watts.  What a nice touch to have a familiar face for my week-daily visits.

I went through the mask lock down, which must be hell for the claustrophobic, but in which I was able to go to a happy place.  The RT only takes ten minutes or less, so I was on my way before I knew it.

Dosed up and with a container full of more drugs and many instructions, let's see how this week would go!

Well holy flip - Tuesday to Friday was very very tough.
Nausea - easy to hear and disregard - but debilitating, especially when I was trying not to loose weight and keep up my fluids without using my PEG for 3-4 weeks.
Reflux - the dexamethasone used to kerb nausea, caused reflux and I could not get comfortable at night.
Chemo Brain - thinking, talking, reading, watching television  - they all made me feel nauseous.
Night Psychosis - a big call, but I think the speed in the dex had me all over the shop at night.  I was constantly pondering the most bizarre hypotheses over and over all night.  I did not sleep at night for three nights.
Other than that it was pretty good.

No, It was a dog fight.
I was flailing about, delirious and wounded in no mans land, caught in the barbed wire - Alison, still running her business and this household - dragged me out of that shit hole.
As I recall, she could only spare one hand to grab hold of me, but it's all she needed.
A very strong woman, my wife.

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On Saturday I came a lot better.  I went to Ned's footy - where he played up in the 'Saturday Team' and kicked a goal! - as I walked past the obligatory BBQ - which I had actually been rostered on for, thank you so much to Bill Pattison for manning that post for the morning - I held my breath, but caught a whiff and it didn't make me want to throw.  About 20 minutes later I had a revelation.

"I could go a bacon sandwich..with a fair bit of sauce"  This was profound after the week I'd had.  Alison knew the importance of it and had legged it round to the barby in minutes, carefully picking out the right bits of bacon and following my sauce instructions to the letter.

What a change!  Later that afternoon, I had another revelation "I could go a schnitzel!" WTF.  So we ordered schnitty packs for the first time in out 17 years in this house, and I watched the Power beat the Crows, I worked my way through enough of it to make any 75kg man would be proud of himself.

Things have not been quite so simple since Saturday, but I have certainly had it a lot easier and am well pleased to have two full weeks before my next ChemoT.

Today I met with M F, my Clinical Practice Consultant.  The guy is a legend and has made up a pharmaceutical plan which seemed to be based in some very sound science, on how to avoid another week like last week.

Coming up for me is the effects of RT starting to kick in. External 'burning', throat pain and ulcers.  And my two more rounds of ChemoT on top of that.  Possibly a big dose of naivety, allows me to think, it can't get much worse than last week. We'll see I guess.

Thought this was the Gideon's Bible at first.  Was much excited to see a book I have spent about three years enjoying, placed like a bible on top of the pile.  Is there a Gideon's equivalent for Such Is Life...the Furphyions?

My first day of school

Stop! Chemo Time

RadioT and the creepy mask to locate me millimetre perfect

The Lovely Sammy Watts....fa fa fa fa fa fa fa fa (Kinks fans)

Typical friendly RT