3 Too Many

T Day = 35 (Chemo only in weekends) 8 Chemo to go this round.

A half decent longish sleep thank goodness – though woke aching and sore & slow.  Actually I don’t mind as I know that once I start moving round that it eases up. The head is too bad pain wise either which is good.  Just looking forward now to Monday week – even though it’s a work/school day I will not be setting the alarm before 7am as I will have not drugs to be up for or Radiation appointments to be at early!!  7 more days!!  Then maybe Tuesday start back into an early start in the gym and get myself ready for round 2 – plus try to dispose of the 15kgs that have joined me over the past couple of months! Think they can take their leave now along with the mofo’s.

I know I’ve said previously about the steroids decrease making such a big change – but honestly they have.  If you know anyone put on to Dexamethasone http://www.chemocare.com/bio/dexamethasone.asp (great website for understanding Chemo drugs) during their Cancer treatment make sure they understand the doses and why they are on it, but most importantly how long they are on high doses for. The one thing I have learnt the most through this experience / battle / journey (I guess you could say all 3 really)  – is that while I went in with the full faith of the medical profession behind me, I have also learnt that you have to dig more behind what’s going on with their decisions as over the last 5 weeks I have had to ride some easy times with the treatment and I’ve hit some bloody new lows that are hard to deal with – but turn out to be because of mis-management to an extent of my treatment.  So the key is to research – understand and question.  The Doctors are only human.  I nor they can’t blame the rarity of the tumors for any mistakes.  I mean every week they ask how are you going – do you have head aches, any seizures, etc?  You answer no – they look sort of surprised sometimes.  It is frustrating as – typically I don’t medically fit the tick boxes for diagnosis – yeah, yeah – I know if it’s different I’ll have it or do it  

The only signs that I have these 3 unwanted extras is the left side face droop which is actually improving a bit – Wilson occasionally, memory issues (forgetting bits and pieces – more from the last 6 months – frustrating as hell as I used to have a good memory).  Oh the hair is now gone & bruise really easily.  Yes I still tire with energy going quickly but that will apparently get better again once Radiation stops – so in the next 3-4 weeks it should be better.  I have taken several moments to look back at the past 5 weeks treatment & just see how it went – cause in terms of how some people get thru I think that I have done it easily.  I realise that different cancers and treatments do knock the hell out of you, so don’t get me wrong, I’m just saying from my point of view.  I’ve been nauseous, tired, fatigued, had an appetite that would rival a locust, insomnia, put on weight, suffocated by the mask in the radiation, moody swings, blob in eye, hearing getting fuzzy in right ear, head, back and joint pain – you know all minor things really in terms of what they are trying to stall to give me more time.  And as they differ mostly each day you learn to cope with each day as that. You also learn to deal with people telling you to slow down and rest, and take it easy – most of the time believe me compared to what I was like – I am slowed down and taking it easy! So as we close out on the last 7 days of the first round of the battle against these 3 too many unwanted guests I think that in general terms I am pleased with where I have gotten too with it all. But most importantly I couldn’t have gotten here and be in this semi sane mental state without the ongoing support from you folk – everyone out there that reads this, takes an interest in what’s going on, has provided support in some way from just a text message saying stay positive to those that have been able to shuffle me around, provide meals, etc – every bit counts and helps in every little bit – it has been an incredibly humbling experience.  I know that at times I haven’t been the easiest person to be around but I’m still learning this too – as I’ve said there is no Cancer for Dummies book or Cancer 101 class to take – each person who gets dealt a Cancer card faces their battle in a different way cause not only is each Cancer different but we all are too.  Yes there are times when I’m pee’d off about it all – 3 months ago everything – I mean everything in my life changed over a period of 2 weeks, which of course has an impact on those around me meaning their lives, plans, dreams, futures changed too.  The hardest thing I’ve had to do is tell people who – especially those closest to me that I’m going to die sometime in an unknown amount of time cause – I’ve taken the usual medical route and got something rare.  I think the saying it is the easy part – the dealing with the reaction is the hardest.  I can accept that I’m dyeing – we all are from the time we are born, but the protective nature in me I guess doesn’t want to see people hurt by something I’m doing or done.  But this sort of falls outside the square a bit I guess.  Anyhow – enough waffle or ramble as I don’t feel like waffles today   I intend to be here for as long as I can be.

Spot some emails coming through that a system restart at work is delayed so jump in to help get things running again.  Nice to be able to help out and make myself useful.  Actually great that I could remember how the hell to do some of it.  Though a bit slow it is coming back to me.  John, Govi and I get thru the server starts and John & Govi chuck through some test files – all looking good.

Morning sort of ambles away and head to Bunnings to look at paint colours – again – need to find a match for the colours in the house. Run into Fridge & Nutty – there  – have a bit of a natter and catch up. Buy an uncooked sausage from the Halswell guys doing a sausage sizzle outside Bunnings – not nice eating raw onions, & cold meat! Home then via Dad’s and a cycle store – looking at a new bike for Jacob.

Get home and have late lunch, then get changed and head out for a walk.  I think we are setting a good pace – then realise that if I go any slower I’d be heading backwards – guess that’s the bugger with the what the treatment does to your brain!  As I said before, there is no way I could drive as I have no concept of distance or speed really.  And it does make it fun trying to cross the road!  Get about half way around and stop for ice creams.  Then get by the Booths house and stop in to say Hi and have a catch up & a coffee.  Nice break on the walk. Head off then as nearing dinner time.  Get home finally – 6.6kms walk – not to bad!  Absolutely knackered though.

Have an easy dinner, then sit down to blog and cruise and watch crap tv.  Go and listen to Jacob read for a bit too.  Then back to blog to get it finished as need an early night – knackered and fighting against the sleep/fatigue demons.  But all in all a good day.  That’s about it for the day folks, so the usual – M&D time about 10ish, then to bed I think.

Have a good one  folks.  Till tomorrow – keep it safe and happy.

Kia Kaha.