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As of first thing this morning that horrible feeing of duty returned, and I awoke with the same old feeling of routine and responsibility. Its mums first full day back at home, and the first day the carers hae returned, so here I sit couped up with the dogs, while the carer tends to mum. My mind is sinking quicker than the Titanic right now, so I'm doing all I can to try and keep my mind focused on better things.

The reality is, once I have the hallway door up, (will have to be done today), then I can leave the dogs in the hallway, and mum and the carer will have all they need in the front of the house. This means the carers can come and go as they please, and I won't be tied down by the times they visit. Which also means I get a little freedom back.

Its hard to try and explain to people how my mind has worked with all this. Seems a bit pathetic to say I am stuck at home, but because of the visits, appointments and mums occasional fragile state, its hard to commit to getting away without worrying constantly.

So here we are, carer is here, thankfully its one mum is familiar with, so things are off to a good start. Also today I have to speak to the agency about the afternoon carer coming later in the day. 3-4pm would be good as it spreads out the visits, and allows my sister to come at lunch time when she has less on her plate.

Got a whole load of other "me" stuff to take care of, the list seems trivial but endless (to my mind anyway) so I need to knuckle down and get that all sorted out too. As well as buying and fitting this hallway door (missions!!) Then just to check the damn thing will hold the dogs back properly. My DIY skills leave a lot to be desired, so wish me luck with that.

Right, I better crack on, first things first, breakfast and paperwork.

Catch ya later

Regards

Michael

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After a few weeks of "respite" and having a little freedom from the pressures of life, it appears its all about to change again. Mum is coming home from the hospice today, I am returning to work for the first time this year tomorrow, and in a few weeks time I will face an enormous life changing challenge. While things have been settled for so long now, suddenly I am left wondering how everything is gonna work out.
The past few nights I have not got much sleep, waking throughout the night in slight panic, then struggling to settle again.

Looking back over entries of a year ago I am remembering the stress I was going through, the worries about mum being home, and struggling with appointments and caring for her.
Over the last week the hospice have been discussing with us what sort of care package she needs once back at home. She was annoyed with the regular 2 visits a day, so when they said they wanted 4 in place for when I'm at work, she flipped. The discussion has wavered from care homes to coming home. And the circumstances under which she can come home. Finally agreeing to try 4 a day, giving me peace of mind while at work, we decided she could come home. Only to hear from my sister the next day that she and mum had agreed with the hospice that there would only be 3 visits a day. Apparently my sister has agreed that she will visit regularly during the day while I'm at work, so she won't be alone. Let's see eh!

Then there is work. In previous meetings with them we had agreed a careful steady phased return to work. My worry was always that as soon as I stepped through the door, it would all be rushed and I would be back to full hours very quickly. After reassurances this would NOT happen, you can imagine my surprise when the first suggestion was up to full hours in 3 weeks time! So this is going to be interesting trying to get that all worked out and slowed down.
Not to mention the pissy and frosty reception I got from my colleagues when I first walked in the office.
Its all new to me, new location, new office, new PC, updated systems etc. So its a whole lot to take on board. Add that to mum coming home, the worries about her being home alone, and arranging the other bits, and suddenly the skies are darkening!

Maybe I should go to the doctors now and get some stronger medication lol. Maybe I am building this all up in my head, and its all going to be fine. Who knows. Only one way to find out I guess!
I really do wish that the 4 carers had been left in place. Just so there was an independent care package, with me and my sister being extras or bonus carers. But this isn't to be the case, so no point in dwelling on it eh.

So with all this hanging over me, I'm trying to have my last "morning of freedom", so I can try and deal with tomorrow as it comes. But as the time is ticking by I'm wondering if working tomorrow is going to work or not. No carers will have been installed by the time I go to work, no full day will have been had at home with mum before she is left. That would leave my sister, who doesn't live with us, to install the carers, and leave me in the dark to know what has been requested, agreed, and arranged.

Aaaah who knows what eh, we shall find out, watch this space!

Regards

Michael

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Started out early today to go with my good friend Rachel to the grave of Graeme. She was unable to make the funeral, so we went along today to have a chat at the site, and spend some time remembering him.

It was strange being back there, everything so quiet. Ground settling, just a few people about tending to families graves. A true sense of peace for Graeme at last. Not lonely at all though, just peaceful. Myself and Rachel had a good chat, with her the grave to blame Graeme from time to time lol, was just like old times.

But then reality hit for a bit, and the truth of the matter struck us both for a bit. Gone forever, taken away from us too soon. Suddenly life takes a whole new meaning, and living for tomorrow seems like such a waste of time. Today is the day, embrace it! Own it!

The one nice thing is, knowing where he was laid to rest means I will forever more have somewhere to go for a chat when I need to blow off steam, or just want to be close for a bit.

Today reminds me of just one thing. Life is too short to worry about petty things. Have fun, make a splash, create memories, and left nothing unsaid.

Short and sweet today I know, but then the best things in life are eh 🙂

Regards

Michael

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1

All aboard!!
For the first time properly in my life I am sitting in the benefits office, trying to sort out getting some help with the rent while I'm on half pay. Ok so the tide is turning, and soon I should be earning again, but in the meantime, any help with the rent and council tax would be gratefully accepted. But will it be that easy?
I was told because of previous info given, all I need bring is my last 2 months payslips so they can work our an average to base any benefits on. But something tells me that its not going to be that simple. Something will be missing, wrong or needed in order for average joe me to dare to claim anything, surely.

The offices are all newly refurbished here, and very nice indeed, with their hard metal chairs which numb your arse in seconds, and full of people speaking all sorts of languages who will probably be far more successful with their claims today than I. (I say in jest. I'm not prejudice, honest).

So while I sit here, bored senseless, I thought I would add something to my blog, to pass the time, and share another experience of mine. One I hope never to repeat, and that none of you have to either. I don't mind being part of a system, and if all works out as simply as I hope, then I will change my views. But last time I came with mum, we queued for an hour to get £2.86 a week in help with the council tax, wowza!

While I sit here, my time being sucked away, my mum is waiting, no doubt impatiently at the hospice for her post-lunch fag break. Hopefully I will get there in the next hour, or I will be in for a rough ride for sure. Its a lovely day out there, and I have already spent a couple of hours in the sun having a panini and coffee with Tracy, talking thru the woes of our terrible lives lol. So I am looking forwards to an ice-cream and a drink in the sun with mum this afternoon.

I have however used 3 of the minutes waiting wisely. Calling work to arrange going in on Thursday to start the long road back to work. The hope is to not rush things too far ahead of what I can see coming. With mum not knowing where she is going next, I need to plan for that in my return to work. Fingers crossed they will be as accommodating as discussed at our last meeting.

Right, I suppose I better listen out for my number being called, and get my refusal/rejection over with asap lol. I will comment on this entry in a bit when I get an answer.

Regards

Michael

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Not that I have been anywhere in particular, but I sure haven't blogged much recently. My mind has been a little preoccupied in its usual jumble of confusion, but with a few extra twists.

So as I sit in the doctors surgery, waiting to see my GP about my "mental state" shall we say, I thought I would take a few minutes to pause and start putting thumbs to keys (2011 version of pen to paper). So let's find a suitable starting point, somewhere after my last entry.

Mortality, how about that for somewhere to start. On the 5th May I was reminded of the meaning of mortality, as were many others, as we gathered for the funeral of Graeme Breen. At 28 years old he was far to young to pass away, but he fought a hard and nobel battle against anything thrown his was. Illnesses and all other kinds of adversity, he ploughed right through it all, and all with a smile on his face when anyone looked on. I hae lost many people in my seemingly short life, but Graeme stands for so much, and will continue to do so too. I think everyone left the burial that day feeling empty, but with a clear understanding that life can be over in a flash.

Then you have my mum, who seems to defy the odds over and over. Once given a year, she is now almost 3 and a half years into her fight against cancer, as well as her fight against anyone who tries to help her too. Well you know what I mean.
Since going into the hospice she has travelled down a twisty country road, taking turn after turn. Changing direction in health as well as opinions of certain things, especially treatment and care.
At the moment her stomach is working well so she is comfortable eating and drinking, which she has not been for quite some time. She is being well looked after at the hospice and getting into a routine of visitors, ciggy breaks, and eating properly.
There have however been arguments and standoffs over medication, with her insisting they keep cutting her medication, and making her beg for her sleeping tablets etc. She won't accept that medication can change colour, and some meds are replaced to have better effecr. As has been proven with her bowel medication. But overall things with her are good while at the hospice. I have said before and will say again now, St Christophers is an amazing place filled with amazing people. Staff, volunteers and patients.
Mum has now spoken to her sister Joan, and her life long friend Pam on the phone briefly, getting them up to speed on how the place is like a hotel. She enjoys the food, and the banter with the staff. There have been downs too, with her constant refusal to try different things like massage therapies, and other sorts of complimentary treatments, as well as not wanting to use the common room / lounge as a change of scenery, which would be good exercise for her as well as getting out for free air more.
Speaking of exercise, that's another area she is still persistent in not doing as she is told. Advised by the physio to take short walks regularly to work on her strength and coordination. Naturally instead of regular and short, she has occasional bursts of energy so goes for "long" strolls, wears herself out, then falls against walls like she did yesterday. Doh! No telling some people is there!
So that's mum, doing ok, and looking for her way out of here.
The undecided parts are when she will leave here, and where she will go to next. The doctors are checking for funding for home care or care home, whichever she prefers, but I'm pretty sure that's already agreed by the PCT anyway. Then there is where she goes. In my mind, the way she is now, not needing constant care, but irregular and occasional care, her best bet is the local (very nice) care home where she can summons help when needed, and is purpose built for her requirements. However home is still an option if the situation is right. Its really a battle in my mind, not wanting to deny mum coming home, but also not wanting her to be in a compromising situation with regards to her safety and well being. I guess all I can do is go with the opinions of the professionals and adapt to their recommendations. I also must really visit the care home to see what its like.

Speaking of mum coming home, before I was aware there was talk of this I was at the doctors surgery (this morning when I started writing this entry). I discussed the situation with me, where mum was and how I felt, and we got onto talking about a phased return to work. Comforted by his control of the situation, and in the knowledge of how work want to also introduce this phased return, I have provisionally agreed to try it. So I emailed work this morning to say I finally have the green light to try and return. I am still on meds, but all controlled, so I'm hoping that getting back will get me back to a structured way of life. Obviously as soon as I had finished talking and agreeing to this, I was informed by my sister that they are talking about sending mum home next week. While not set in stone, its taking some deep breaths not to panic and shy away from the return to work.

So much more is going on around me too. I feel more awake and aware of other peoples plights and situations, and want to help where and when I can. Whilst at the same time, I seem to shy away from things I need to address and deal with in my own life. Recently falling folly to a bill payment, letting the date pass, which has since been referred to the courts (oh crap), and not paying much attention to bank balances and finances, which just leaves you hanging at each turn. But today I am regaining control of these matters, and taking leaps towards getting it all under control again. Emails and phone calls dealt with this morning. I won't dwell on me and those things for now though.

Oh, drawing, yes I have discovered I can draw, well kinda. Putting pen to paper the other evening to start sketching a design for a tribute tattoo for Graeme, I shocked myself at how good it is. So I have something to focus on there for now :).

Right that's it from me for now, its all dragging on a bit, and I'm sitting in the sun in the gardens of the hospice with mum, so should pay her some attention I guess.
Thanks for reading, I won't leave it so long next time.

Regards

Michael

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Well we are standing outside in the gardens at the moment, ok she is sitting in a wheelchair, while she tops up on nicotine. And while she smokes, she is telling me stories of what's been happening. The confusion, the complaints and the praise for the staff. So where shall I start?

Let's be positive shall we. The praise of the wonderful selfless work that the staff and volunteers here do. The grounds kept in amazing condition, the wards so clean and how any member of staff will take care of any problem put to them, regardless of if its their job or not. Having spoken to and dealt with a large number of them, I have to agree. They truly are amazing people with so much heart time and patience for anything and everything. Thank you all.

Then there is the food, again brilliant food, but over recent days, while I have seen no decline in it, she feels that its not very nice, and various other reasons and excuses to allow her to refuse or leave food. Signs of dehydration are creeping in, which I'm sure will eventually end up being tackled with a drip, but in the meantime she is demonstrating to others that she can be fussy at times, and her own worst enemy. The reasoning for this refusal, constipation. Forgive me for dropping that like that, but its her current favourite reason for everything. Weakness, sickness, discomfort and refusal to eat all comes down to the same thing, even though she has forgotten that she has told be about going to the loo. Oops!

Then there is medication. Naturally they are getting it all wrong, giving her things she doesn't need, or giving them at the wrong time and making her ill from it. Or the other one is giving her things that are doing nothing. Even though she can't remember what most of the drugs do, or how they actually work, she criticises them all the same. Yes I know she is elderly and its her right to complain, but when she gets to the point of refusing them, that's more of a problem. Her main focus on this is again the constipation, and how the meds are not working, when quite clearly they are. Because she has suppositories and a medicine, she suggests that the medicine is pointless as its the supps that are doing all the work.

The confusion is the big one that's starting to worry me a bit more now. Last week there was a hint of confusion really starting to creep in. And on admission here she was offended and bored by the questioning they gave her in a general reasoning test. Seeing if she could identify what day it was, and other general things. Now she said she was irritated and didn't have the energy to think about these things, but in truth she could not answer the questions. Having newspapers daily should be a clue to the day of the week, but she can't remember.
But it doesn't end there. Yesterday I showed her the work I have had done on my foot tattoo. I have been having it for about 8-9 months now, but she appeared to have NO recollection of ever having seen the tattoo ever before. Then this morning she was telling me about a questionnaire she had to fill out for the hospice about her symptoms. As she spoke about it it became obvious that she wasn't sure how she should have filled it out, nor what it was for, so she just wrote stuff on it. I have of course highlighted this to the staff here.
As she spoke about it, she either lost interest in what she was saying, or lost direction of thought, so just stopped saying what she was saying and started something else.

There are so many frustrations seeing her like this, and trying to stay silent about them, which is doing her no good at all. So I am trying to get the truth out of her, help her understand what is going on, and at the same time feeding back to the staff my worries, so they can act on them. She said today that last night she had REALLY bad pins and needles in both arms. She had not told anyone, but instead mentioned it later on to a nurse once it had passed. When she was explaining the story to me, she didn't understand what the big deal was, and even though it was a borderline painfull sensation, she didn't feel it warranted pressing the nurse call buzzer. They however disagree and insist that she does next time.
Also when telling me this she referred to not being sure what she should and should not tell people, my answer was simple... ANYTHING! Feel something weird, press the buzzer! She then went on to say she had told loads of people before about her hands going numb, but that had never bothered anyone. However I'm pretty sure I have not heard that one before. I do know that all doctors and paramedics have always asked about pins and needles, to which she has always said no, until now anyway.

So I'm left wondering what other ailments and pains she has that she doesn't feel are worth mentioning. And how the hell we will get it all out of her. The hospice are here to help control her pain and condition, but without knowing the truth, how can they :(.

Right, I better get on with things now, but thought I would log todays visit.

Thanks for reading.

Regards

Michael

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For the first time in days I have some down time. On my own, relaxing and time to take in what's happened this week. Most importantly the passing of Graeme Breen. Now I know I have spoken of this before but suddenly I am overwhelmed by a deep feeling of loss and emptiness. How can this be so? How can someone so dear to me, to loving to so many possibly be gone? Can it really be true that I will never see his cheeky little face again!

As I lay here alone in bed, thinking of all the silly and sentimental times we shared, sadness washes over me, and tears form in my eyes. I want so desperately to cry a river of tears for such a loss, but the flood gates hold them back. Such emotion is rushing through my veins right now. Anger, frustration and utter confusion. Someone must have something wrong, surely... Please!

To have been trusted in his inner circle, told his deepest thoughts, and being someone he could turn to in times of need has been nothing less than an honour. To have shared time with him so recently after coming out of hospital, even if I did descend upon him and his parents house without invite, gives me some relief. In knowing I wrote my true feelings for him to see, and to have spoken about so much on that visit again makes me feel a little more relief that I managed that.

Is it possible to be so full of emptiness? Can you be consumed by an overwhelming feeling of absolutely nothing? If its not, then I have no idea what I feel right now, other than torn open, and emptied of all understanding of how things work, and why we do all this, only for life to do something like this to someone so precious.

I hope one day to have even one tenth of the friends and respect that graeme had. For such a little man, he was a mighty force, and made a huge impact on so many. Battling illness, offering support, pushing boundaries, and just being a great friend to so many, he will be remembered for so very much. A small man with a huge heard, a quiet guy with a mighty voice. His footprints on my heart, and voice in my head will live on until my own final breath.


Regards

Michael

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2

Have you ever had one of those days or weeks where it feels it is impossible to succeed? Like every aspect of life is pulling at a different limb, and whichever direction you move in will only be right for one tiny part of your life. Yesterday I developed a severe back ache, and right now it feels like its because I am over stretched and being pulled all over the place. Any decision I have made recently only seems correct for the one situation I have given thought to, and what is good for the goose, sure aint good for the gander.

What I need to do now is take a good hard look at everything going on, decide on some priorities, take a swipe at a few other things and cut them free, and just basically get on with what is important to me. Easier said that gone though, I warn you now.

Let's look at money first, that sneeky stuff that seems fine for ages, but then in an instant just runs dry and leaves you high and dry. In my case I thought I was doing pretty well, managing mine and my mums money, dealing with bills etc, but then came alone half pay! Doom and gloom ahead. I have tried for a week now to get my payslip from my employer, so I could apply for help with the rent, but they have been slow about sending it out. So another week lost that I could claim for help with the rent and council tax. It has finally arrived now though, and using the benefit calculator I will get a fair bit of help, so fingers crossed.

Then there is my project, which swallows up money like a huge pit. Nearing the very end of it all now, but almost out of credit with it all, it leaves me in a precarious situation. Without the cash to finish it will all have been a waste, but to get the cash to finish requires me to borrow. I'm not that keen on borrowing right now, but at the same time I realise its the logical solution to a number of things tugging away at me right now. Back pay on council tax, a few bills etc, which are all mounting up, as well as getting my project finished, which would be of huge benefit.

Then there are the emotional strings, mum being in the hospice, the relationship with my sister under constant strain from misunderstandings and poor decisions. Recent events with my aunt have not helped at all, with her being given the impression that I am not helping with mum anymore. That was very upsetting for us both.

I want more space, I need more compassion, I feel I want more love. Does anyone understand me completely? Why am I doing things the way I'm doing them, taking the long road around where there is a perfectly good shortcut? I really don't know what the hell I'm doing right now, but I'm confident that with the support of friends and loved ones, and with making a few sensible well thought out decisions, I can sort most of this out. There WILL be sacrifices along the way, I have already committed to that, probably a long time ago, but the main thing is to some out the other end, in one piece and with a smile on my face.

Rough time ahead, but fingers crossed all will be well within the next few days.

Regards

Michael

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Have you ever had one of those days or weeks where it feels it is impossible to succeed? Like every aspect of life is pulling at a different limb, and whichever direction you move in will only be right for one tiny part of your life. Yesterday I developed a severe back ache, and right now it feels like its because I am over stretched and being pulled all over the place. Any decision I have made recently only seems correct for the one situation I have given thought to, and what is good for the goose, sure aint good for the gander.

What I need to do now is take a good hard look at everything going on, decide on some priorities, take a swipe at a few other things and cut them free, and just basically get on with what is important to me. Easier said that gone though, I warn you now.

Let's look at money first, that sneeky stuff that seems fine for ages, but then in an instant just runs dry and leaves you high and dry. In my case I thought I was doing pretty well, managing mine and my mums money, dealing with bills etc, but then came alone half pay! Doom and gloom ahead. I have tried for a week now to get my payslip from my employer, so I could apply for help with the rent, but they have been slow about sending it out. So another week lost that I could claim for help with the rent and council tax. It has finally arrived now though, and using the benefit calculator I will get a fair bit of help, so fingers crossed.

Then there is my project, which swallows up money like a huge pit. Nearing the very end of it all now, but almost out of credit with it all, it leaves me in a precarious situation. Without the cash to finish it will all have been a waste, but to get the cash to finish requires me to borrow. I'm not that keen on borrowing right now, but at the same time I realise its the logical solution to a number of things tugging away at me right now. Back pay on council tax, a few bills etc, which are all mounting up, as well as getting my project finished, which would be of huge benefit.

Then there are the emotional strings, mum being in the hospice, the relationship with my sister under constant strain from misunderstandings and poor decisions. Recent events with my aunt have not helped at all, with her being given the impression that I am not helping with mum anymore. That was very upsetting for us both.

I want more space, I need more compassion, I feel I want more love. Does anyone understand me completely? Why am I doing things the way I'm doing them, taking the long road around where there is a perfectly good shortcut? I really don't know what the hell I'm doing right now, but I'm confident that with the support of friends and loved ones, and with making a few sensible well thought out decisions, I can sort most of this out. There WILL be sacrifices along the way, I have already committed to that, probably a long time ago, but the main thing is to some out the other end, in one piece and with a smile on my face.

Rough time ahead, but fingers crossed all will be well within the next few days.

Regards

Michael

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I thought it only fitting to try and put into words what the passing of Graeme means to me, and share my thoughts and feelings on who Graeme was to me. I'm sure we all have varied experiences of him, and have all been touched in some way by his warmth and loving nature, but here is my take on him.

Meeting Graeme some ten years ago now, first impressions were a curious little fella, but at the same time, someone who oozed character and happiness. It wasn't long before we started finding common ground and a bond formed. As the years have passed, so we hae drifted back and forth, in and out of each others day to day lives. Whenever around each other we would usually part company with another memory to look back and smile about. From heart to heart conversations, to crazy behaviour, there was always something to remember about each encounter.

To me Graeme was one of my closest and most trusted friends. In the times of Nicci, he was the one I turned to for comfort and help thinking straight. When that all ended we made a pact that if anything happened to the other, it would be the remaining one who would let our mutual friend Nicci know the news. So naturally I feel bad for failing in this, and for her hearing through someone else. But I must not dwell. We have spoken, all is well.

Other times together have included various days over Xmas and NY's, where we both rejected the celebration of just another day, once joined by Andy Lobo, and other times joined by the masses of the old Cruise-South at random locations around London and the UK. We shared a common interest, and that was to try not to take life and people too seriously, and while the world throws crap at you, smile, rise above it and make the most of the hand you were dealt. Coming from someone dealt such a cruel hand from birth, this has been a very valuable lesson and experience for me, and I am blessed to have shared so many moments with such an amazing man.

Nothing will ever replace the hole left by the passing of Graeme, he was unique, and precious in so many ways, he is impossible to replicate or replace. I'm sure we all share the same sentiment.

In the last few years with the battles with other ailmentsI feel that my relationship with Graeme went from strength to strength, becoming profound, and realising he was so important to me. He always joked calling me dad, saying I was like a second dad to him, old and always giving advice and there for him. Whilst a very lovely comment, and one that gave me a great sense of responsibility towards him, there is no way I could compete with the sheer awesomeness of his mother and father. For all they have been through, I feel privileged to have spent time with them, and having got to know them a bit. You are two wonderful people, and I can't imagine the pain you feel at this time. Hold your heads high, as your other sons should, and be so very proud of the life you gave my friend and your son. Blessed!

Life after Graeme, well he is one of the few people who I will never forget, and will be in my daily thoughts for an eternity. Having lost John Littlebury back last July and now Graeme, I have lost probably 2 of the closest friends a man could ever hope for in such a tragic and short space of time. It feels so unfair right now, and its hard to make sense of it. But I cannot dwell, while I can never replace them, I can do my best to live every day to the fullest, in their honour.

So I sit here now, in the sunshine in the garden, with the dogs Graeme battled allergies to meet, and was so proud to be photographed with, wondering what's next, and what I can do to make sure that he always remains by my side. My words will live on, and I can re-live this moment over and over, but I need something else. I am sure I will find what I need.

My goodbye to Graeme is a simple one. Thank you for blessing me with such a true and deep friendship. For your trust and honesty with me, and for being there when I needed a friend. Please watch over me, and guide me the way you always have. Through trouble and tough times, I will stand strong knowing I have my friend Graeme Breen by my side as always.

I love you forever, as my brother, and as your nominate second father. Farewell for now Graeme, Rest In Peace.

🙁 x
Regards
Michael

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