Talj’s Blog

18th June 2010

6th February 1975 to 18th June 2005

It feels like just yesterday. Some days I still feel the grief is just too much to handle. I miss your smile, your voice, the touch of your hand, our lovely cuddles, stroking your beautiful face, running my fingers through your hair. I’d give anything to be able to do those things again.

I will never forget the moment I said goodbye to you. I remember laying my head next to yours on the bed, stroking your face and hair, how beautiful you were even with all the machines and tubes. I talked to you for hours, just you and me, I told you how much I loved you. When the time came for me to leave I held you close to me and whispered goodbye in your ear and that I will always love you. As I turned to leave I stopped in the doorway and stood alone for what seemed like forever, just looking at you as the tears ran down my cheeks…

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“You were the best person any of us knew, and you died and you lost everything. I lost everything. I lost the only person I ever loved”

“No you didn’t. I was right here and you loved me anyway….Lost love is still love. It takes a different form that’s all. You cant see their smile or bring them food or tousle their hair or move them around a dance floor. But when those senses weaken, another heightens. Memory. Memory becomes your partner. You nurture it. You hold it. You dance with it….Life has to end….love doesn’t.”

(The Five People You Meet In Heaven – Mitch Albom)

5 years on…

Happy Birthday Sweetheart xx

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6th February 1975 – 18th June 2005

Article in the telegraph (website)

I have many, many feeds in my netvibes account all of which report the latest brain tumour news from around the world to me as it happens. Tonight an article flashed up about the Liverpool Care Pathway for the Dying…not something many people are aware of (I certainly hope none of you are 😦 ). The pathway aims to make the end of a persons life the ‘best’ it possibly can be…instead of how things ‘used to be’…it is a wonderful document but sadly all to often it is not adhered to and through BT Buddies I have known of plenty of occassions when the basics from the pathway would have made those last few days that bit more easier on patients and their families…

Anyway, I have an interest in the pathway as part of BT Buddies so I clicked on the link and was greeted with the following paragraph…

“Imagine you have just six hours to live. You’re wired to monitors, and have tubes all over your body. Nurses and doctors know you’re not going to recover, but they still keep changing your drugs and taking blood from your arm. Your spouse is trying to hold your hand and talk to you. But all you can hear is a machine that goes “beep”. It’s probably the last thing you’ll hear.”

This is how Damian died. Had he not already been a patient when he had his massive heartattack he would have died very quickly at home. Instead, because he was an inpatient he had a massive heartattack and was worked on on the general ward he was on for over 5 hours by people trying to (obviously) save his life. He spent the next 7 days in intensive care where we kept being told over and over that he was not going to recover and they would give us a few hours and then they would switch his life support machine off. Those few hours would pass and they would return to us and say they wanted to try one last thing. For 5 days this was our life.

However, from the very first day they knew that if by some miracle he pulled through he would need a heart transplant and would lose his right leg……his kidneys were failing and his liver had pretty much packed up…I wondered what made them feel the right thing to do was keep trying, over and over again without a care in the world for us sat in that small relatives room wondering if that next moment would be his last…or for Damian. How would he cope with all these things if he were to survive? If he were able to speak what would he want to happen?

I find the telegraph paragraph above provides me with a few more difficult questions. Would I have preferred Damian to die quickly and possibly alone? Would I have been ok that I never got to say goodbye? Or, whilst those days in intensive care were horrific, did they provide me with a way of spending a last few days with Damian?

Actually, if they had stopped trying to treat him that first day, moved us to a side room and gave us all time (he was on life support) to say goodbye I feel that would have been best for both me and Damian.

Instead we said goodbye the first few times they came and told us there was nothing more they could do…after that it became too distressing for me, and I was worried that as they said we should talk to him cos he could probably hear us, he too would be getting upset with us ‘giving up’.

I called my Mum and told her the doctors said he could probably hear us but I didn’t know what to talk to him about, my Mum told me to just say all the things I had ever wanted to incase these really were his last days… I stayed with Damian that first night alone and did what my Mum said…probably one of the most important things someone has said to me my whole life…

5 days after his heartattack I went home. I intended to go back the next day but around 7pm I spent sometime on my own with Damian and I said goodbye. Home was too far away for me to dash back if something happened to him so I couldn’t leave without knowing I had said it ‘just in case’. It was the most important moment of my life. He had lovely rosie cheeks and the nurse I had got to know very well had shaved him earlier so his face was so soft.. there were beeping machines, wires all over the place, nurses checking stats etc…but to me it didn’t feel like there was anyone or anything else there. It was also the most heartbreaking moment of my life.

The next day, before I left for the hospital, his Mum called to tell me they were running some tests and that we couldnt be with him whilst he had them so she would call me when I could go up and see him. Later that day she called, but it was to tell me that Damian had been declared brain dead. They believe a clot travelled to his brain at some point within the last couple of days. To be certain they scheduled the test to be run again the next afternoon.

Damian’s heart began to stop in the morning of the 18th June 2005 and he passed away, before the tests, and shortly after 11.30am. He was 30.

I will always believe that, after my goodbye that Thursday evening, that was when the clot travelled to his brain…I have felt ever since that evening that he knew when to say goodbye too and though he could not speak and hadn’t moved for days he signalled to me that it was ok for me to leave him…maybe I sound crazy?

Here I am rambling on! But just those few words at the start of that article brought all this back to me in an instant.

The next paragraph in the telegraph article says…

“Ten years ago, that was how too many people reached the end of their lives – in hospital, as a failing body, plumbed into machines, with staff doing their best to cope, but with no guidance on how things could be better. But today the way in which many hospital patients are cared for has improved enormously – and death is being treated as the natural end of life, rather than a failure of medical technology.”

I have experienced the death of both a sudden trauma patient and observed as an ‘outsider’ a terminally ill patient…Damian died just over 4 years ago, Rose died almost 3 years ago…So the NHS weren’t letting us down 10 years ago but at the latest 3 years ago and I have been made aware of other very sad final days since then…maybe one day someone somewhere will write guidance which is followed by all and does right by each individual patient and their loved ones…maybe…

Damian

1975 – 2005

4 years on…

The posts below were written by me on this date in 2005, 2006, 2007, 2008 and the here and now…

11th June 2005

Never in my wildest dreams could I have seen this coming. I only spoke to you this morning and you sounded a lot happier. When I didn’t hear from you at 9pm I gave you a call but you didn’t answer, I thought maybe your water tablets were working again!! Tried you again a few minutes later and when you didn’t answer I paniced. You were so well compared to a few days before, when I rang the ward the staff nurse said you were being taken to ICU, they couldn’t tell me what had happened but I already knew it was bad. By this time it was 12.30am, I called ICU and spoke to your Mum, what a weird conversation that was. I wanted to get to you right then but trains weren’t running and Mum had had a drink so couldn’t drive me. I went to sleep at about 1.30am and prayed that you would last the night. I wanted to hold your hand and tell you that I love you…

11th June 2006

9am, 1 year ago today, would be the last time we would ever speak. You sounded so much brighter, you were feeling so much better, if only I had known then I would never hear your lovely voice again :o(

Words can not begin to explain how lonely life has felt without you :o( So many things have happened since you entered hospital on 5th June last year, all of them would have been that much easier if you had been here, if I could have talked them through with you.

I have been blessed with MBF, J, A, P and G. Without them I wouldnt be here now. They have been so kind to me and helped me to cope since you’ve been gone. But they will never be you :o(

I am writing this late on Saturday night (or early sunday morning I suppose) I have felt like I was on holiday today. The new flat has a balcony and with the door open its felt like an apartment in the Canaries or something, plus I remembered to put suncream on so it even smells like holiday!! I met some nice people when I was out at the football, I am pleased I pushed myself to go, you’d have hated the heat but the atmosphere was great….game was less great but, we did win!

I just wish you were still here to share life with me. The love, laughter, tears and joy you brought was abruptly and cruelly taken and has left my heart in pieces. I want to understand why you had to go but know I never will :o(

Before this all becomes too much for me I will sign off (for now) but know sweetheart that there isn’t a day goes by that I dont think about you and wish that I could have you back.

I love you today and always XXXX

11th June 2007

There are times in life when you wish that things would move quicker but, there are other times when you can’t believe that life dare move so fast! It’s difficult to really understand that it has been 2 years since this terrible journey began.

Reading back through posts like those above enables me to see how much I have been through in that time and also shows me that even on days like today when I don’t feel it, I am doing ok!

This post today will be a short one, my deepest feelings are only to be shared with Damian in my ‘special time’.

What I would like to do is take a moment to thank those who know exactly what today means and who walked with me through our week in ICU…to my Mum, C and W, to J, to A, to R the Pastor at RBC, to MBF – all of you in some way started a new journey with me on this date and I wouldn’t have made it to today without your love and support.

Thank you, all of you {{{HUGS}}} xxx

11th June 2008

Funny, it only seems like yesterday. I’d still just like to be able to stop the world for a moment and try to get to grips with all that has happened since this day 3 years ago.

I don’t have much to say today, I am finding things difficult at the moment and don’t seem to be able to find the right words to say properly how I am feeling.

This past year has been another one full of so many ups and downs. I’ve been to Germany, Snowdonia and the Isle of Mull (twice). I’ve had good health days and some really bad health days. I’ve made some great friends, lost some old friends, refound an important old friend and moved house…I am sure there are many more things!

Throughout everything, as well as my Mum, brother and sister, there has been one other constant in my life since June 2005. MBF, thank you for sticking by me and supporting me through everyday since then XxX

Tomorrow I will return to St Thomas’, exactly 3 years to the day when I headed there to see you. This time I am returning for the results of extensive tests and I am hoping to know for certain whether I have MS, Lupus or something totally different. So it’s going to be a day full of mixed emotions I am sure.

However, no matter where I am or what I am doing you are always in my thoughts Damian, I don’t think that will ever change, and days like today will always be full of happy and sad memories of you xxx

For Damian

11th June 2009

Looks like I say this every year, but, I can’t believe how fast time seems to go. So many things have changed this past 4 years.

MBF is here today and we are planning to head to the coast for the day. It’s also C’s birthday. We had come home from dropping her at the airport this day in 2005 when my world flipped upside down. Having not heard from you at the usual time it took quite a few phonecalls to find out what was happening with you…

4 year’s on C is 25 and will be a Mum sometime in the next few weeks! That will make me an Auntie…how old does that make me sound!!

These posts get harder and harder for me to write as the years go by. I don’t really know what to say 😦

A few days ago I managed to catch an episode of ER that I had wanted to watch for ages…in hindsight I should have read the reviews before watching…instead I spent much of the last half an hour in tears. Whilst the cause and type of injuries aren’t anything like what you went through, the tests and outcome are so close to what happened I couldn’t help but relive those last few days…

Here’s a Youtube video of the scenes I am talking about…

Still miss and love you Sweetheart xxx

Happy Birthday…

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6th February 1975 – 18th June 2005

Here we are again, time seems to be passing way too quickly. It doesn’t feel like nearly 4 years since you left and I can’t believe you would be 34 today, you old git! 😉

As time passes I’m not sure whether to celebrate your life or mourn your death on days like today, I suppose that I do both. To think of all the things you didn’t get to do can be upsetting but remembering all you did and the way you did it always makes me smile.

I read the following words in my memory book quite often as they capture your personality so well…

“…He was animated, caring and loyal, with a strong sense of fair play and justice. Always determined to get things right, but tolerant of other’s failings.

He was funny. Sharp, witty with an uncanny empathy for friends and colleagues. I personally shall miss his ability to gently mock my latest big idea, while believing passionately in its execution.

A man of simple passions; but simplicity born, not of dullness or ignorance, but a deep resonating simplicity born of personal tragedy, self knowledge and humanity. Having found his life, he loved it and lived it as brightly as possible…”

For some reason I don’t have the words today to explain things very well, so, I will share this video and the lyrics as they say how I’m feeling better than I can….

To Where You Are – Josh Groban

Who can say for certain
Maybe you’re still here
I feel you all around me
Your memory’s so clear

Deep in the stillness
I can hear you speak
You’re still an inspiration
Can it be
That you are mine
Forever love
And you are watching over me from up above

Fly me up to where you are
Beyond the distant star
I wish upon tonight
To see you smile
If only for awhile to know you’re there
A breath away’s not far
To where you are

Are you gently sleeping
Here inside my dream
And isn’t faith believing
All power can’t be seen

As my heart holds you
Just one beat away
I cherish all you gave me everyday
‘Cause you are my
Forever love
Watching me from up above

And I believe
That angels breathe
And that love will live on and never leave

Fly me up
To where you are
Beyond the distant star
I wish upon tonight
To see you smile
If only for awhile
To know you’re there
A breath away’s not far
To where you are

I know you’re there
A breath away’s not far
To where you are

I had planned a trip to go and see D with MBF this weekend but sadly I am not well enough to go now 😦 I am disappointed as over the last few weeks he has been on my mind a lot and sometimes I just get this urge to visit him. I like it there, if you can say that about such a place. There is a nice field and pond at the front and it’s nice to sit by the water for a little while and collect my thoughts. Hopefully once my surgery and stuff is done we’ll be able to take a trip to see him instead….

Thanks for reading all 🙂