3 Too Many

T Day = 16 (Adjuvant chemoradiation) – 18 Radiation & 26 Chemo to go this round.

Happy Birthday Mum!!!!

Thank goodness for small mercies – I was that tired I’ve actually had a fairly good sleep.  Though started waking about 3:30-4 with pain/discomfort.  If I can just get over that hurdle then I could sleep til 5:30 and that would be great!  Still don’t mind my early morning time, seen as I can’t gym it and are usually functioning better early I get things done for the day than later when the radiation and other fuzziness/fog cuts in – like writing the blog as it gets very random later!

Last night I was having a think about how just how much has changed since the treatment has started and this whole going from where I was 8 March to where I am now 22 May, and not really knowing or understanding which piece is the hardest to deal with. Follow this (as per the from the beginning timeline) – I know it’s long and wafflely – read if you want

• 8 March I had the usual Botox session in Dunedin, but something didn’t seem right with my speech afterwards (not that Botox kicks in straight away – it can take a week or 2) – but my tummy voice was saying – something not quite right.
• 15 March CT Scan shows 2 masses – off to hospital – tummy voice again saying not good but at least something there to explain it, & the Docs are thinking abscesses – so in medical terms that’s OK as operable – so positive that will be OK.
• 16 March MRI scan shows 3 masses – not connected, Docs puzzled though ass to what they are as they don’t meet the criteria for tumor, or lymphoma or abscess – great – if it’s going to be rare or odd – then who else would be first in line! Still positive that I’ll be fine – I mean I feel fine – in fact I feel bloody fantastic!
• 22 March – Biopsy taken – no worries it is just surgery – OK its brain surgery, but really in this day and age it is not a big deal – well that how I see it.  Still positive that all will, be good.  Though starting to see the concern spread to others around me about their concerns.  I have 5 days in hospital to go over every possibility of what is going on with me.  Yes there were many tears shed in the night, and dark places visited in the mind but I never once thought off giving in or up – I was in the right place for having whatever is wrong dealt with.  And also when it came to telling others, dealing with whatever the outcome of the biopsy, I was going to be in a more mentally stronger and I have always been able to accept that as humans we are not infinite objects on this planet – we all share a commonality regardless of who we are – and that is death, therefore it does not scare or worry me. So the alone time in an away – as much as I hate hospitals was beneficial.
• 30 March – Well we know just how bad the news got.  OK – I’ve prepared for this, I know others haven’t – so I’ve got to still deliver it the right way.  The reality of telling people bad news hits home – as I realise that not everyone is geared or as up to where I am with this in my mind. IN a way I was still more miffed at the fact they told me I’d never drive again or drink – I mean really!! F’me – you’re terminal – we don’t know how long or how to treat it even yet as it is so rare – but we’ll really ruin your Friday and tell you that your independence has now gone totally and don’t have a dink while you contemplate what we’ve just told you because it may mess you up – really!!  Don’t you think what you just told me did the same thing?
• 7 May  – Treatment day 1 – Nearly a month down the track and they have a plan of attack and can’t really tell me what I’m in for. The good news is that the CHemo is tablet based therefore I won’t be spending hours locked in at the hospital hooked to an IV line.  But mentally I have found this step of all so far to be the hardest – as up to this point the physical/visual changes have been minimal, OK I had a hole in my head and staples but that’s healed quickly and I put weight on with the steroids but otherwise I feel good and normal.  The amount of support from family, friends, colleagues, footy team/club, employers, and the wider community is amazing and an incredible humble pill to try to swallow – thank you too all.  But  from the 7 May on I will start to be a cancer treatment patient – the reality of this gets me hugely today on so many levels.  Cancer – it is still a word that I struggle with saying about myself – as it was not an illness that I ever would cross my health during my life. It is easier to say tumor than Cancer – but the same words tend to bring out the same reaction in people.  And need the same mental attitude to beat them. But I will start to physically/visually change – so to the outside world (strangers) what is wrong with me – they’ll be able to see.  I m not sure if I can deal with that idea.
• 22 May – week 3 of treatment and still each and everyday is a learned one!  The fatigue hits you differently, I now know what to expect with the Chemo – half hour after taking it – wham! Sucker punches to the kidneys and can bearly walk! But I can deal with that – I know it’s coming.  I look like a chipmunk/squirrel that’s scoffed all the winter food at once, thanks to the steroids!  Now there cut down I hope the bloody face decides to slim up too as the mask for radiation is getting a tad tight!

What I’m trying to get across – if you know anyone that is faced with a similar card in life then let them know how I got through to it thus far.  Yep there is a huge amount to deal with , and I know everyone is different in the way they deal with things – both emotionally, physically and mentally, but at the end of it all it still needs to be dealt with.  Rally the troops (your closest support people – family, close friends & employers early) they need to be ready to help and it easier to downgrade the situation than bombshell (as I have cruelly done to several people including my GP – sorry Annabel). As the stages or situation changes step up the info going out and decide what is /who is next that you need to help – not just the patient – but more importantly those closet to the patient – they often need the support more than the person, as I said I had time to process what is happening, so I think I was far ahead of where others were in been able to deal with the diagnosis and accept it.  One of the main questions I have been asked is how do you tell the boys – easy 2 words – open honesty! Do not ever under-estimate the resilience or ability of a child to read the reality of a situation. As hard as a question may ever be – honest answers, small amounts. Don’t baffle with too much to cover what you don’t want to say.  Share tears, time, hugs & humor – esp. black humor – it does really help!  The questions conversations may come up at odd times but that is fine.  The last thing I need to know I left is a p’eed off teenager cause I didn’t tell him the honest answers about what’s happening to me.

Right on with the day – Get an early call from Dad as they are leaving Wellington for Auckland – and it has been nearly a week since he left. Have good quick catch up.  Up then and rouste the boys for another day. Down the Chemo pills – 3 little bombs for the 3 little invaders! That’ll learn’em!  Hit the shower then before the kidney punches come in!  Jacob on his bike before 8 – minus 2 outside and he’s wearing thin shorts – oh the youth of today!  Lachie is grumbling about scootering – softy!

Working from home this morning as have 3 back to back appointments today – radiation at 11:30 then Physio at 12pm, then Radiation Doctor at 1:30pm – then home for a nap I would dear say – though feeling bloody fantastic so far today, barring the waves of nausea passing thru.

All appointments go great – radiation does it’s normal and buggers me – only 17 to go – nearly half way – yay!!!  Physio gives me some more anti – Wilson exercises and a plan to keep the leg moving and to rest more when I need to so I can get through this a lot better.  Have a quick-lunch at the hospital Cafe and run into Richard – Sarah (sister) partner, and he is going to come and see how they lock you into the mask for the radiation tomorrow as well as Mum (whom is taking me to treatment tomorrow). The Speech Therapist sneaks a visit in to check how I’m going too – and is happy with progress. The Radiation doctor is happy with the way things are progressing – and says that the tiredness is only going to get worse so to take it easy.  Get dropped at Barrington to grab  couple of things needed for dinner. And decide to walk home as it’s a lovely day and I really feel like stretching the legs out – about a 15 min walk home with a small amount of groceries.  Go to footy, etc, and nap in the car as we drive about.

Arvo and evening pass quickly. Cousin Jenny stops by for a visit and a catch up .  Otherwise not a lot to report apart from tiredness kicking thru as usual.  Going to try another earlier night and see if I can get more sleep than normal as I feel great and intend to go to work tomorrow.  M&D time nearly folks!

To all a fantastic evening/day/arvo – and “Hey let’s be careful out there!”

Kia Kaha.