1

(5 replies, posted in In Remembrance)

CM,

I'm so sorry that you're hurting. Some days are just too hard. Nobody should have to endure this level of pain and grief. Yes, I found Sunday difficult too. The kids and I went to the grave to put down flowers and it was just heartbreaking to see my son and daughter there, in the rain, yearning for their Dad. It was also 5 months to the day since Diarmuid passes away.

Everywhere we looked there were reminders of Father's Day. It makes it even harder.

The first few weeks after they pass away we are numb with shock. Then it becomes real and while the pain truly kicks in for us, our friends and families have gone back to their own lives and schedules. That twists the knife just a little bit more.

I'm thinking of you CM and if you ever want to chat send me an email here through the board or contact me on Facebook here: https://www.facebook.com/deborah.murphy.333?ref=tn_tnmn

xxxxxx

Janet,

I'm truly sorry for your loss.

It's such early days for you. My husband died exactly 5 months ago today and I still consider it very early days. Just take each hour as it comes. Do not plan yet to "stand on your own two feet". It's too soon and that's too scary. Take all the time you need and just do whatever you can - if that means barely getting out of bed some days, well so be it. The pain and grief are so raw now.

I love this advice that I recently read. I think of every day so if I'm having a day where I'm upset or a day where I feel like I should be doing more I remember this and I just go with the grief: "Let the grief take you where you need to go. Your grief is wiser than you."

Love and peace to you Janet and thank you for sharing that beautiful story.

Deb xxx

That's beautiful Julia.

(((Hugs)))

Deb x

Thanks Marion,

x

Is Opisthorchis viverrini the same as liver fluke?

Oh Julia, I am heartbroken for you. And yet I know too that a peaceful death is so vitally important and it sounds like Sue had just that. I hate this cancer so much I want to see it in its physical form and beat the crap out of it.

I just wanted to briefly comment Julia on what you said in an earlier post a few days ago about "Sue's demons". Rest assured Julia that the discomfort and restlessness that occurs shortly before a passing is very normal and it's not so much distress or demons, it's a transition from this world to the next. It's possible that Sue wasn't even consciously yearning to go home, she was merely transitioning from one state to another. A few days before Diarmuid passed away, he couldn't get comfortable and was up and down and sighing and moving around. The doctor said to me "it's not physical, it's not emotional and it's not even psychological". She believed it was the first step in his soul's journey to a better place. I only mention this so you won't think that Sue was too distressed.

Love and hugs for you Julia. May Sue rest in peace.

“The dead are now in a place where there is no more shadow, darkness, loneliness, isolation, or pain. They are home.”
― John O'Donohue, Anam Cara: A Book of Celtic Wisdom

I am facing the likelihood of being a young widow and of loosing my soulmate. However, Oli, as much as he taught me the meaning of love, has also taught me the meaning of death, and I now know that despite no longer being a part of this earth in body and mind, his spirit will continue to forever guard over me and provide infinite love. This gives me comfort and joy and the will to keep going, no matter what happens.

Lita, those are beautiful words. So moving.

My heart goes out to you and Oli and I wish you nothing but healing and peace and comfort in the coming weeks and months.

Deb xxx

Janet I'm so sorry. It's a terrifying and deeply lonely situation you're in. Please come back when you can. There is great support on this board regardless of what stage the patient or caregiver is at.

Deb xxx

arujain,

My sincere condolences on the loss of your father.

Please don't be hard on yourself about not seeing him more. Firstly, this disease can take hold so fast and send someone spiralling into ill-health before you've had time to process anything. Secondly, guilt is a very common part of grief, especially when it comes to the loss of a parent. I lost my Dad 10 years ago and I was full of guilt for a long time. Same when my brother died a couple of years back. I don't know why but you just feel guilty no matter what the circumstances of the death.

My husband passed away in January of CC. He was the same age as your dad - just 47. I have 2 sons and a daughter. They all miss their Dad dreadfully, just like you miss yours. It's very difficult. I'm sorry.

As regards your question re: alcohol and cigarettes, my husband never drank alcohol his whole life and never smoked even one cigarette. Yes, alcohol abuse causes liver damage and disease but it's got nothing at all to do with this particular disease, bile duct cancer. I do agree that it's a tragic irony that someone who never drank would die from a liver-related disease but like I say, alcohol is not a contributing factor.

Look after yourself.

Deb x

I'm truly sorry for your loss. I agree, it's a horrific disease. I'm glad your Dad lived his final days in the care of the hospice team. My husband died just under 4 months ago and I am full of anger about many aspects of his diagnosis and care (though he was only ill for one month) but I will be eternally grateful that he spent his last 6 days in the loving tender care of the hospice staff. They are, as you say, angels.

Deb x

11

(43 replies, posted in Grief Management)

Thanks Darla, Marion and Gavin.

Gavin, the cheesecake is out of this world and absolutely simple to make. You'd love it. My closest friend is married to a lovely man from Edinburgh so I've heard all about the deep friend Mars Bars. Apparently you can get deep friend cream eggs now too. Yikes!

Lainy, Pamela, Darla, Gavin and CM, thank you all so much for your kind words.

Deb xxx

13

(17 replies, posted in Introductions!)

Margaret,

That's wonderful news. So far so good. I can imagine the fear going through your mind and heart when you hear you have a liver/gallbladder issue. Last week my son was in great pain in his upper right abdominal area combined with fever and nausea. He's just turned 18. The doctor said 'it could be something to do with his gallbladder' and I must have visibly blanched. Last time I heard it 'was something to do with his gallbladder' was regarding my dear husband and he was dead within weeks. Turns out my son had a chest and kidney infection. But as Marion said, once this cancer touches us, it stays with us. I'm so glad the ultrasound showed nothing sinister. Best of luck with the bloods.

Deb xxx

I hope and pray that the infection clears Amy and that her strength picks up. It's a very difficult time. Try to make the most of this time with her and although the temptation is to run around talking to doctors and nurses and doing various jobs for your Mom (and that's important too of course), do try your utmost too to just talk to her and hold her and just be with her in case the infection doesn't clear or she doesn't pick up strength. This time now is precious.

Pain management is vital at this point so if she is in any pain or discomfort then that is unacceptable and staff must intervene. You might consider talking to a hospice team even just to discuss symptom management. They are so amazing at ensuring that patients are pain free and relaxed. It's something to consider. I don't want to scare you. I know the word 'hospice' is not an easy one to hear but it's never too soon to contact them and they are so amazing at helping people with such serious illness.

I'm thinking of you Amy. Your Mom is blessed to have a daughter who cares as much as you.

Deb xxx

I'd like to write here about my husband's funeral which took place on 20th January this year. It was such a moving ceremony and it's only now that I'm letting myself dwell on it and remember it vividly. I haven't even read the eulogy again since the day of the funeral. The service itself was so beautiful but, obviously, heartbreaking too. I'm sorry if this gets long.

Diarmuid was a musician so it was very important to me that the funeral service be filled with music. As an introductory piece, we had a family friend, who is a wonderful classical guitarist, play 'Cavatina' (the theme song from The Deer Hunter).

In the middle of the mass the choir from my sons' school did a beautiful hymn: 'He Will Raise You Up on Eagle's Wings'.

After the eulogy came the most moving part of the mass. My brother sang and played guitar. Everyone cried. It was so incredibly moving and while it broke my heart it made me so proud too. His singing was just so beautiful. The song he sang is an Irish song called 'The Night Visiting Song' by a famous Irish singer/songwriter called Luke Kelly. Here is a link to the song with Luke Kelly singing it and the lyrics are below. Chris, my brother, did a superb job and there honestly wasn't a dry eye in the church. http://www.youtube.com/watch?v=88W14esJulo

The moment the coffin was carried out of the church (by our two sons and my two brothers and Diarmuid's brother and nephew) we rocked things up a bit and a sound engineer friend of ours played 'Carry on My Wayward Son' (by the band Kansas) through the PA. It brought tears and laughter in equal measure from the congregation. The reason we chose this song was because four days before Diarmuid passed away his best friend, Dylan, visited him in the hospice and said that after leaving the hospice he was going to a bar to hear Ian (a DJ we all know) play some classic songs. As he was leaving Diarmuid caught his hand and said 'hey, tell Ian to play Carry on My Wayward Son especially for me' and smiled. So the next time Ian was with Diarmuid he did indeed play that special request, at his funeral. He even rigged up a professional sound system so it sounded just incredible.

The following is the eulogy I wrote for Diarmuid which my sister-in-law read at his funeral. I wanted to say a lot of things but I knew I would break down so I wrote it and she read it for me.

"Diarmuid was my best friend. He was the funniest person I've ever met. Even in the midst of a crisis he had the ability to make me laugh. His wit was legendary and his musical talent was inspiring.

I met Diarmuid at a gig in 1988. His loving nature and sense of humour made me fall in love with him instantly. The fact that he played in a band (or 5!) didn't hurt either!

We got married in 1993. There are too many happy memories to list but I can say for certain that the three happiest days of our lives were the days our children, Emmet, Daniel and Aisling, were born. Diarmuid loved his children at first sight and that love never wavered for a second. He expertly balanced the roles of loving father and carefree rocker!

He passed on to his children a passion for music that they will carry with them their whole lives. Thank you Emmet, Daniel and Aisling for making Dad so so proud and for being the best sons and daughter any parent could ever hope to have.

I am privileged and honoured to have had Diarmuid in my life for 23 years. Thank you from the bottom of my heart for your love and friendship.

We love you Diarmuid. We are heartbroken but we will see you again in heaven. Sleep tight my love."

-------------------------------------------------

Here is a link to The Night Visiting Song by Luke Kelly http://www.youtube.com/watch?v=88W14esJulo and the lyrics are as follows:

THE NIGHT VISITING SONG

I must away now,I can no longer tarry,
This morning's tempest, I have to cross,
I must be guided,without a stumble,
Into the arms I love the most

And when he came to his true love's dwelling,
He knelt down gently upon a stone,
And through her window he whispered lowly
Is my true lover within at home.

Wake up, wake up love, it is thine own true lover,
Wake up, wake up love and let me in,
For I am tired love and oh so weary,
And more than near drenched to the skin.

She's raised her up, her down soft pillow,
She's raised her up and she's let him in,
And they were locked in each other's arms,
Until that long night was past and gone.

And when that long night was pased and over
And when the small clouds began to grow,
He's taken her hand and they kissed and parted,
Then he saddled and mounted and away did go.

------------------------------------------

Here is a link to Carry on My Wayward Son by Kansas http://www.youtube.com/watch?v=PVH-u9gI … re=related and the lyrics are as follows:

CARRY ON MY WAYWARD SON

Carry on my wayward son
There'll be peace when you are done
Lay your weary head to rest
Don't you cry no more.

Once I rose above the noise and confusion
Just to get a glimpse beyond this illusion
I was soaring ever higher
But I flew too high.

Though my eyes could see I still was a blind man
Though my mind could think I still was a mad man
I hear the voices when I'm dreaming
I can hear them say...

Carry on my wayward son
There'll be peace when you are done
Lay your weary head to rest
Don't you cry no more.

Masquerading as a man with a reason
My charade is the event of the season
And if I claim to be a wise man, well
It surely means that I don't know.

On a stormy sea of moving emotion
Tossed about I'm like a ship on the ocean
I set a course for winds of fortune
But I hear the voices say.

Carry on my wayward son
There'll be peace when you are done
Lay your weary head to rest
Don't you cry no more.

Carry on, you will always remember
Carry on, nothing equals the splendor
The center lights around your vanity
But surely heaven waits for you.

Carry on my wayward son
There'll be peace when you are done
Lay your weary head to rest
Don't you cry no more.

-----------------------------------------

Finally, I'd like to share with you a photo tribute I did for Diarmuid. Here is a link: https://www.facebook.com/video/video.ph … 5584912132

Thank you for reading,
Deb
xxx

16

(10 replies, posted in Introductions!)

Hello and welcome. I'm not here long myself but this site is just amazing for support, friendship and information.

I am so sorry that your brother is going through this. It's a cruel disease. It's wonderful that you and your family are there to support him

xxx

17

(43 replies, posted in Grief Management)

Lainy, thanks. It certainly is nice to think of him being with us in some manner. This 'new normal' takes some getting used to.

Thanks CM and Lalupes!

Hi Marion, thank you. Are Mars Bars available in the U.S.? They're a very popular chocolate, nougat and caramel bar! But the cheesecake is just delicious. You make the cheesecake like any other one but you also add home made caramel and chocolate to it plus big chunks of Mars Bar. It's scrumptious!!! Here's a pic:

http://i49.photobucket.com/albums/f258/DebIreland/Cheesecake.jpg

18

(10 replies, posted in Introductions!)

I'm truly for your loss TJ.

19

(43 replies, posted in Grief Management)

Thank you Darla,

Well today is a big milestone and a day of mixed emotions! My eldest child (er, adult now!), turned 18 today. 18 years since he came into the world and his Dad and I fell head over heels in love with him from the first moment we laid eyes on him. Diarmuid would have been so proud. I still can't believe he wasn't here to see his eldest child reach adulthood. Such a cruel loss.

But I am grateful that my son is healthy and he's a good kid and is following in his father's footsteps musically. He's a very talented young man.

Thankfully he didn't want to have a party or even a small gathering. At first I thought it was a shame but sometimes I think kids have more sense than parents because I am now so relieved I'm not trying to organise a big bash. I'm way too tired. I made him a Mars Bar cheesecake, his favourite. Well, mine too! I ate half of it. It's nice, just the 4 of us here, together. Lonely but happy too.

xxx

20

(43 replies, posted in Grief Management)

CM,

What a wonderful idea to include photos of her Dad in arts and crafts. Down the line, when it's not as raw, I will definitely do something like that but what most appeals to me is your idea of the "Daddy flowers". Aisling, my daughter, is so interested in planting and gardening. And this year especially we are planning on doing lots of indoor planting as our hyperactive mischievous dog has turned the garden into a scrap yard! We will do some Daddy Flowers, how wonderful. xxx

MissingWayne,

I can feel your pain and I am so very sorry that you too are going through this deepest of sorrows. My heart goes out to you. I honestly don't think most people understand a fraction of what we're going through, unless they've been there or they are extremely empathetic, as many on this board are. It is the deepest most cutting pain combined with anger and confusion.

I admire you for embarking on and sticking with therapy and the hospice group. I need to do something similar. I never seem to be able to make that more, not yet anyway. I did speak to the hospice counsellor with the boys and she was terrific but I need to set up regular sessions with her or someone else. It's hard to get anything done though. It's like walking through sludge isn't it?

We have quite a bit in common. I have suffered from depression for many years too so, of course, that in combination with this bereavement leaves me in a vulnerable state. On the other hand, I do think that we have perhaps an understanding of our innermost feelings and fears that maybe others don't have. Maybe I'm wrong about that but I feel it. So at least we are in touch with our feelings, as painful as those feelings are.

Best of luck to you and hang in there.
Deb xxx

21

(43 replies, posted in Grief Management)

Thanks Nancy. I really appreciate your kind words and I am dearly sorry for your tragic loss too.

What a very kind thing your neighbour did, helping you out by clearing that snow. I find too that those I would have expected nothing from have rallied around and those I would have assumed would be there day and night have disappeared. It's an odd phenomenon but one I'm slowly learning exists for many, if not most, bereaved people.

It's wonderful that your daughter cares so much and it's great that she can express her fears to you, rather than keeping it locked in.

Yes, I try to talk about him all the time and the boys are very receptive to this. He was such a witty person that there are a multitude of funny stories to talk about. My little girl is not yet ready to talk about him openly. We have to be gentle about it but I do hope that she will open up and talk freely soon. She's no doubt trying to block out the pain and only able to let it in little by little.

Thanks again Nancy xxx

22

(43 replies, posted in Grief Management)

Pamela, yes exactly. It's hard to know what to ask people as the mental focus isn't really there these days so it's so much nicer when people just do things instead of making vague promises or saying 'call me'!! We're getting by, bit by bit. It feels like we're stuck in limbo a little bit but some days are okay.

Darla, thanks. Yes, it means so much to be around people who really understand and truly 'get' this limbo that we're in. Some people mean well by trying to gently push us to move onwards or to get out more etc. but really, we need to do things when we're ready, not when they decide we should be ready!

Gerry, thank you very much. I agree that professional counselling is most likely necessary. Today my sons and I met with the counsellor in Marymount Hospice where Diarmuid passed away. She was terrific - she listened and was wonderfully supportive and validated our feelings of anger and frustration. I'm not sure how often we can attend the hospice for counselling but I'll take whatever's available as I do gel well with her and she was there with us when Diarmuid was nearing the end and when he passed away. Down the line, I'll look into more structured counselling too.

Pam thank you. I loved hearing about the nurse and the cheesecake. Those are the little acts of kindness that make all the difference.

My kids had a good day today. They're off school now for the Easter break and life is so much easier without the school schedule. We're still taking things day to day in general but making the most of the good days.

xxx

23

(26 replies, posted in Introductions!)

Les, my sincere condolences on the loss of your beautiful Sarah. My darling husband passed away 2 months ago just a few weeks after diagnosis. In fact, the monstrosity and aggressiveness of this disease is evident when you think that new members of this board have already lost or are losing their loved ones by the time they've written just a few posts here.

I wish you strength in the coming days, weeks and months. Be kind to yourself and surround yourself by caring, sincere friends.

My sincere condolences on the loss of a wonderful woman, your sister-in-law and, clearly, a great friend too.

I can't imagine what an emotional wrench it must be for you to have this very same disease as your dear sister-in-law.

I have read many of your posts now (including your very kind post to me in my own thread) and I see that you are a very brave and kind person and a true asset to this wonderful discussion board.

Kerryn,

I'm very sorry for your tragic loss. This monstrous disease has broken my heart too.

I too hope to spread the word about this type of cancer as it certainly needs more awareness.

**Hugs**

Deb x