3 Too Many

T Day = 23 (Adjuvant chemoradiation) – 13 Radiation & 20 Chemo to go this round.

Well another night and another good sleep – well waking once then getting up at 5:45 to the alarm.  Been looking at what has changed to make these differences in my sleep patterns – the only thing is the change in the amount of steroids that I’m having!  So have been doing some more in-depth research as to what these  things do to you besides give you an appetite from hell and blow your face up like a balloon!  The mask is now that tight that I can bearly breathe – I can open my mouth about 5mm and have to take normal breathes for as long as possible through that – not nice especially when you have a CT Scan day which adds another 10-15mins on top the treatment time.

Having a nausea day too – the waves have started hitting the shore early today and since breakfast I have been feeling poorly.  Still ignore them and get on with other things to distract myself from what’s going on.

On another note – it turns out that most of the side effects that they have been putting down to radiation and chemo or tumors are more likely all steroid based!  The scary thing is that those whom have reported similar issues are on half the dose I have been on for the past 5-6 weeks!  The side effects that match up with mine are –

• Wilson! – muscle atrophy (wasting) & left leg weakness
• confusion
• blurred vision
• irrational behaviour
• insomnia
• moon face – swelling
• appetite increase
• weight gain
• tiredness
• fatigue
• joint pain
• headaches

As I get most of this and since I am now on half and managing better, I will be talking to the Doc today about decreasing the dose to be only 1 or ideally half a tablet per day. The price I might have to pay though is having more headaches – well that’s a small price to pay really to be normal I think.  Really p’eed off that they have let the steroids over run like this so much without recognising what’s happening.  The chemist even commented when he gave me the steroids script that they have never dispensed so many of them in one go.

radiation goes well – the mask seems to be less tight which makes it easier to cope with as I can at least breathe without feeling like I’m about to suffocate.  Then home to have lunch – egg sandwich – got to hit the food in between the waves of nausea.  Hits the spot nicely – and the tum seems to be happy with it – for now.  Back to the hospital, then for the appointment with the radiation Registrar – we hit him up about the steroids and decreasing them more.  He understands why and agrees that I can basically lower to a level equal to a quarter of what I was on with them over the next 3 weeks – then weaning off completely coming off them over the stabilisation month in between, with them starting again when I start on the 6 month Chemo straight run.  So – if you ever get into the Oncology circle of drugs – ask and research them, as it seems that as with this situation, they overlooked something for too long and the price I have been paying is un-necessary (in terms of side effects, etc).  Otherwise they are happy with how, where I’m tracking and my health, bloods and weight is all looking good & well.

Off then to collect Jacob, then Lachlan.  Lachlan has a Orthodonic appointment, then home to get ready for footy practice for Jacob – I sleep the whole way round as the energy demons, have snuck up on me – again.   Not surprised – but still hate the just drifting off randomly. I stay home to recover energy and get tea ready as have parent teacher interviews for Jacob tonight.  All good news – well the standard good news from teachers.  He could try more, stop chatting and apply himself totally.

Home again  – bloody cold.  Tired as  – so not going to be a late night.  Nausea is still rocking in, in waves, but thankfully managing to stay on top of it.

Anyhow – that’s about it for the day.  M&D time coming up then bed I think as shattered.  Have a good one folks – where ever you are.

Kia Kaha.