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!