Quietly Courageous

I drove out of Geelong in the dark hours of Sunday morning after a week of doing what ever it is a brother can do at times like this, yea there were tears, lots of them but Stu’s willingness to remain quietly courageous does permit me lots of smiles too.

What a guy…..

This last week with Stu had so many wonderful moments. I was able to have a couple of ‘sleepovers’ with him, the first in his room at the palliative care hospice, the second at a wonderful house that is a lot less like an aged care facility and more like a holiday house. His wife and I were both very uncomfortable with Stu being surrounded by the very old and frail and with our health ‘system’ putting pressure on for beds for those in need of clinical support, moving Stu was a priority. Anam Cara House in Geelong is just that. A house where those who stay  are considered guests not patients, where family and friends can call in any time, use the kitchen and lounge areas, even stay over if they like. Stu’s wife and I are so very grateful to the staff and management for their efforts and ongoing support to get Stu settled so quickly.

Sleep overs with my brother were unbelievably therapeutic for me. My plan was to be there for him, protect him a bit I guess by doing as much as I could for him, doing the things he would prefer the nursing staff didn’t do.

After most of our lives ‘away’ from each other, his illness has gifted me – the both of us really, a chance to fill in so many of our blank pages as brothers. We shared a few beers, retold lots of family tales, laughed at the antics of our wonderful dad, our crazy big brother David’s life and times of family holidays, first cars, run ins with the law and me being keener on a couple of his girlfriends than he was, as it turns out.

Stu also shared some moments, feelings of regret and remorse with me. Holding Stu’s hand while he ‘set the record straight’ was very hard, again he gifts me the privilege of trust and love while he quietly suffers. Still as he said to me during one of our ‘UFC’ type showering sessions (thats how he referred to the times when I did what he preferred the nursing staff didn’t), I’d end up as wet as him, we’d laugh as I gently wrestled his mostly immobile self from bed to chair to bathroom and back again. ‘Sorry about all the shit jobs mate… I bet you didn’t think you would ever be working for me’………. Its a pleasure my brother, an absolute pleasure and I’m sorry about the blast of cold water on the first attempt.

Our time left with Stu is, to the best of our knowledge,  now very limited… a few weeks at best. The hard conversations have been had, Stu has let us know what music he wants at his funeral, he has harassed the funeral service representative on his coffin style – ‘don’t try and sell me stuff with your sales budget in mind’ he said at one point.

Stu, you are so much like our dad.

Talking though Stu’s ‘end’ with his wife and the senior nurse was very , very confronting. I understood his non resuscitation and no ‘IV’ treatment preferences but as I have learnt, its not the tumour that will kill him, its most likely to be an infection/ phenomena that will take whats left of our Stu.  With the loss of Stu’s ability to swallow now becoming evident, his limit for ‘oral’ interventions only will become largely meaningless. Stu was asking Loraine and I to agree to do nothing more than ensure his comfort for what time we had left with him.  ‘I want to finish up here, not in a critical care ward’…

Quietly courageous is our Stu.

The week with Stu was also the occasion of his 57th birthday, talk about bringing emotions to the surface. Despite the best efforts of this cancer to steal away an occasion of celebration in the surrounds of Anam Cara house, Stu prevailed!  Friends, family, laughs, grand kids running amok, a couple of beers and a manageable amount of quiet tears ensured a fab day for all of us.

Thanks Stu!

I’ve said it before in my ramblings on this blog but my heart so hurts for my mum and Stu’s wife Lorraine. Lorraine very recently having to witness and manage (largely without Stu by her side), the slow demise of her own mother in what is likely to be repeat with her husband and then theres my mum. Her strength and will to live is being so very tested. Parents don’t expect to bury their own,  a repeat for her also is so not fkn right. Wish us and everyone else confronting such difficult times, strength and a feeling of companionship from others. This is too difficult to go though on ones own.

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My mum and Stu on his 57th birthday…… Love and quiet courage

 

Always a bother.

My dear brother wont be home again….. and yet he still has the ability to sing silly songs and verse that make us laugh. Stu has now been moved into a palliative care facility where he can best be supported for the time he has left.

It was as tough as it was wonderful to be with Stu with my fabulous daughters on this trip. As I type away my thoughts I feel the constant pressure of tears in my eyes, seeing my brother now immobile and significantly dependant on others really hurts. But seeing the ‘lift’ my daughters bring when they get to be with our wider family fill me with significant pride. Stu still loves an opportunity to be the silly fool just as our dad was and having the girls there gives him the excuse he needs. I think some of the old ‘ditties’ he was rolling out were straight from our dads crazy repertoire although Stu was putting a bit of ‘free range rapp’ in amongst it.  He sings, we laugh and I have to try so very hard to not cry. Thats the hardest part of slowly loosing my brother Stu. I can be as strong as hell when Im helping him go to the toilet or helping him roll over onto his side, Im up for  making him feel like no ‘ask’ is too hard. I can do anything for him if it helps him maintain any of his personal pride or dignity… its when I see old Stu, the joker, the uncle, the husband and the middle son as he fades, that I crumble.  I love him, I miss him already. I so don’t want to be brother-less, its self indulgent I know. Being a dad is awesome but I started life as a son with two big brothers……I don’t know life without brothers, Ive always had one to play with, fight with, lean on , look up too. I don’t want to be the only one, I love being a brother to others.

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Our mum and my daughter working on the Super Stu poster.

#luv4Stu

 

 

A month is a long time in the GBM world

With Stu having a wee snore behind me I cant help but be so very, very scared of what lay ahead for all of us……..

Only a week ago Stu was getting around at home pretty well. He needed a bit of a boost in and out of the big old couch and the ‘odd jobs’ list of things to be fixed – like a leaky tap, or a light bulb to be changed- had been passed to me . Yea, he wasn’t doing his ‘Jamie Oliver’ impersonation’s in the kitchen as often as he used to but we did think- hope, that the tumor was loosing the battle. Last months scan showed ‘no new growth, Stu’s wife Lorraine (loz to us), our mum all of us felt a sense of maybe, a small piece of calm to feed our collective hope. A month is a long time in the GBM world.

A week ago he wasn’t in a hospital bed with little or no movement down the left side of his body. He didn’t need me to help him sit up, he didnt need me to cut up his food, he didn’t need me to hold him as he walked or to help him shower.

I am hopelessly sad for for Stu,  Loz and my mum. While I’m busy doing ‘stuff’ I’m ok, its moments like this when I’m sitting at an airport or when I’m driving, or out cycling .. what ever and when ever my thoughts are free enough to dictate what it is I should be thinking or feeling they knock on the ‘Stu room’, the door opens wide and I’m flooded with ‘HD’ quality replays of times gone by. Faces, voices and regrets. Its like they happened hours ago…………. With it comes tears and deep, heavy sadness but I so love it, love how it reconnects me to Stu and the wonderful thoughtful, crazy big brother he is.

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God bless you my brother. I’ll be back soon with he girls this time, so look out buddy.

All Good Mate

How do you deal with a life shortening, dignity destroying illness that evaporates hope and forces you and those around you to start planning for your demise?

“All good mate, going ok here today”, thats how my wonderful brother Stu deals with his GBM, its what Stu says when I’m with him, when I call or text him and its what makes us cry together. “all good mate” he says as I hold his hand, hug him tell him I love him and then we regularly just cry………………

Gliobastoma (GBM’s) are a particularly shocking cancer. They form in the brain on their own without spreading from another source in the body, they are regularly inoperable and always fatal. They even disguise themselves physiologically so they can remain undetected for as long as possible while they grow and they grow fast.

My brother Stuart (Stu) was diagnosed a few months ago, it was a casual chat with his local doctor about a ‘few headaches’ lately that led to a scan of his head. I had spoken to Stu a day or so before, the usual check in with each other “hows mum”, “when are you coming home next” type banter. I was planning a trip home on the back of some work travel , I live a 1000 ks from where I grew up, mum and Stu are the reasons I head East back to Geelong a few times a year.  I so now wish I went home more often, guilt feels so very, very  heavy these past months.

#Luv4Stu

 

 

My super hero

Big brothers

They do all the exciting and dangerous things before you do

They encourage you to try what they should have

They tell you off for doing what they shouldn’t have, and

They reassure you when you can’t see what they have seen…….

Big brothers

They’ll put you to bed, and keep your secrets when booze has gone to your young head

They influence your taste in music,

You will get infatuated with their girlfriends, and

You want to be just like them…..

Big brothers

They give you your first ‘nic name’, you hated it back then, but without it you’re just not the same

Big brothers

20 years ago this month I lost mine….

I think of you often David as I know many others do.

Big brother

I remember you wiping away my tears and the times you reduced me to tears

I remember lying in the back of your panel van as you and your girlfriend drove the surf coast roads, tail gate up, fumes and noise, music playing, I felt so ‘cool’. You so loved that red panel van.

Big brother, I’m so grateful to have had you in my life, god bless you forever.

 

Full House

I’d been travelling the 1800k trip home to visit my sick dad on a regular basis. Like many men from his era he had been stuck down with dreaded cancer a few years ago and after some intial positive interventions, he was now losing the fight.
Dad not known for shying away from a fight had battled hard, the boxer in him was evident early as he took all then dreaded results ‘on the chin’, shaped up and stepped up for more.
Edward or ‘Ted’ as I’d only ever heard him called was at his best around other people. My dad had spent his younger years in country Victoria where he did what ever was available at the time to keep himself employed. I know he did everything from driving the local school bus to assisting at the local mortuary in the basement of the local hospital. He was such a great story teller and practical joker. I remember so many ‘yarns’ from dad, my brothers and I rarely knew what was fact or fiction as I’m sure was the same for many others. The story of him hiding under a sheet at the local morgue and sitting ‘bolt upright’ as a few of his mates and girlfriends called in to see him is one of my favourites. I’d heard it so many times over the years but I loved it, I almost felt like I was there when it happened.
Dad like many boys from that era worked from a very young age and had just kept on working. He had missed the call up for the War but he hadn’t missed out the post war lack of money, jobs and very difficult times. Dads CV would include working in shearing sheds, a cook, school bus driver (even without a licence), barmen at numerous country pubs and a boxer. Boxing was a real love of my dad. We always had a crude boxing ring at home and my brothers and I had all learnt to dance the ‘duck and weave’ as he called it.
My dad had boxed and won many formal fights but he was at his best in the informal ‘tent’ boxing troops that set up on the outskirts of many country towns. I think he loved the smokey, noisy, beer swilling atmosphere and the cash of course, he regularly got a good fist full of crumpled damp notes to bring home.

On this visit home I’d really noticed how much dad had wasted away. It was the first time he hadn’t walked out the front door to meet me as I walked down the path. On this trip I had my two very cute daughters with me. Distance had meant dad hadn’t seen his granddaughters any where near enough these last few years, I loved seeing my ‘tough old dad’ melt at the site of these two giggling little cherubs.
Time to leave came around as it always did, I was conscious of his energy / fatigue levels and with a long drive a head of us the girls had said there sweet goodbyes to ‘grandpa Ted’ and were all strapped in the car. As I walked back towards the front door I could feel the emotion, the gravity of the situation. I sat next to my dad on his bed and we held hands. I didn’t know what to say this time. He didn’t take up much room in his big old bed any more, he was frail and he hated that. “I’ll see you next trip”, wasn’t going to cut it this time.
“Son’ he said. “there are times when I haven’t been the greatest dad to you and your brothers……… and I’m sorry’. A heavy silence hung over us, I fought back tears thinking of how hard he had initially fought this debilitating disease. I squeezed his hand a little tighter and told him that there were times when I could’ve been a better son and ‘I’m so very sorry dad’.
“I love you son”, “promise me you’ll wear your uniform at my funeral” he said with a stern, pride filled look in his eye.
I hugged my wonderful dad and remember saying ‘dad we will probably not see each other again’… we were crying together for perhaps the first time.
With tears rolling down my face, feeling like nothing more than a ‘passenger’ unable to do or offer something, I left. I opened the car door and heard my girls high pitched squeal of ‘grandpa Ted, grandpa Ted. Though teary eyes and with a heavy heart I looked back at dads front door one more time and there he was- proud as can be. Dad had found a way to get himself from his bed to the front door to wave us off as he had done for every visitor, for as long as I can remember.

My wonderful dad had a wonderful send off only two weeks later.

Sitting in the front row with my brother the small church felt very full behind me. I stood, straightened my tie, checked the Gold buttons on my Air Force uniform, took the two steps to the lecturn and turned to see not an empty seat in the place. So many people…..”If my dad had known this many of you were going to turn up, he would’ve charged admission”, we all laughed…….
The girls and I miss you dad, your great stories live on in me.