Two months and 40,000 visits later

No that's not hospital visits, although there were lots of them in the last two months! It's now two months exactly since this blog started and this afternoon, somewhere in the world, someone opened the page for the 40,000th time... an interesting piece of trivia for those who like numbers.

Happy New Year!

Presence, absence and historical consciousness

In Ben's absence his presence is even more strongly felt. His absence makes us acutely aware of how present he was and still is in our ways of relating and thinking. We are aware of 'what Ben would have said' or 'how Ben would have responded'. We miss Ben's caustic but not unkind sense of humour. We see Ben's bike and clothes and bedroom that will become someone else's. We see Ben's phone but Ben's characteristic way of holding and using it is absent.

And in his absence we realize how much a part of us Ben was and will always be. "No man is an island... any man's death dimishes me" said John Donne. Ben cannot simply disappear: his absence leaves a Ben shaped hole. But more than that: if in time we forget or cover over that hole, then we would be naive, because for those who have known Ben well, who we are oursleves is partly due to Ben himself. Ben has been part of our own formation and that cannot ever be undone. We are forever, people who have known Ben, people who have been changed by Ben - by his life and now by his death.

The hope of heaven - by Lindy

We so hope you all enjoyed the special day that is Christmas day. We
hope that any wrinkles and glitches that often occur between family
members were amazingly absent. 'Christmas is about family' is a pretty
common belief amongst so many cultures and people in the world. Even
disparate or hostile families try and unite on Christmas day. With
varying degrees of success I imagine!

This year for us then has a very strong and painful sense of 'someone
missing'. Ben seems to be just out of sight. As the days go by he
moves further out of sight. New things are happening that he doesn't
know about and will never be part of. Strange things trigger the
feelings of losing him to the past. Things like new petrol stations on
the Hume Freeway as we drive to Rutherglen or Wodonga. They are part
of the future that he has left. Tim has glasses. Ben never knew him
with glasses.

But Christmas isn't only about families. For Christians, it's about
the most important birth ever. It is about celebrating that life (and
death) that gives us eternal hope. During times of sorrow and sadness
it is about being reminded that life isn't just about this stuff of
today which is sometimes hard and sometimes cruel.

The hope of heaven as we experienced in Argentina, is much more common
amongst people who have not been overly materially, emotionally or
physically blessed in this life. In affluent countries we often treat
it too lightly; we have everything we need here. Heaven can seem
irrelevant. 'Pie in the sky when you die' is a derogatory phrase. Heaven
is not seen as a legitimate part of our faith. It seems to be evidence
that the truth of our faith is invalid. People seem to think that if
Christianity is really true then it shouldn't need the hope of heaven
to convince people.

It was the belief in heaven and an unbelievably wonderful eternity
with no more death - and the Lord wiping away every tear from our eyes -
that was Ben's sure and firm foundation. Thank God for that. If the
whole thing sounds a bit lame at an intellectual level - frankly
ridiculous even - and the Christians you know are quite mad and turn you
off, then please have another try. Have another look. Ben was no fool
and no nerd. For the sake of his memory if nothing else, at least have
one more look.

May God bless you all.

With our love.

I remember...

Sometime soon this blog will fade away. One of the fears after losing
someone is that the memories will fade too. It's been great to hear
and read of people's memories of Ben so I wonder if we could ask you a
favor? Will you add some memories to the comments page on this blog?
They don't have to be lengthy; perhaps just a simple sentence "I
remember when..." If you can't add comments send them to me at
BensGotCancer@gmail.com and I will post them for you.

I remember how Ben was always a climber. He climbed a step ladder
before he could walk.

Chris

From Lindy

Hi faithful blog readers,

Well, you have ridden the roller coaster with Ben through these last
six months. We are thankful for your support and dedication.

When Ben was four or something similar, and Tim was over two, we went
to have lunch with some people we hardly knew who had no children. We
had a vigorous and challenging lunch time as we tried to navigate both
boys through suitable table manners for the lowish tolerance level of
'two income no kids' types. As soon as Ben had finished eating he was
off and away, charging all over the house. The husband said to me as
he watched our little human canonball 'Ben will break arms…but that
one, Tim, he will break hearts.' Ben hasn't broken anyone's arm as far
as I know but he sure has broken plenty of hearts during this time.
But what we feel is not the hopelessness and despair of a broken
heart. It is a great sorrow infused with unquenchable hope. Every day
despite the sorrow and the missing him I find it so easy to be
sincerely grateful for so many things about the way he lived and the
way he died.

My prayer is still 'may none of it have been in vain.'

It's a cliché to say that life goes on. But now I am living it and am
so glad it's true because that's how we keep going. On the day of
Ben's funeral there was a baby boy born to people Ben knew
well and a day earlier another baby was born, also to acquaintances of
Ben. Today we went to a wedding full of Ben's friends rejoicing and
celebrating together. Ben would have been there and had already sent
his 'apologies' to Jess and Lachy a few weeks ago, knowing that he
wouldn't be there. It is lovely being able to enjoy the continuing
celebration of life even when we don't feel we are able to actively
participate yet.

The brothers are travelling well and as people who have travelled
similar paths keep reminding us, we are looking after each other and
regard it as the most important thing we have to do today and
tomorrow.

I hope you have a blessed Christmas.

The thing

You turn this thing over in your mind. This happening. You look at it
from one side and the other. And you think, this cannot be. It's just
too impossible a thing to happen. He is all around us. His bedroom
downstairs with his clothes on the hangers, waiting till he comes
home. His wallet by his bed with his student card and train ticket and
library cards. The house is full of his presence but he isn't here.
Surely he's in hospital, just down the road? But he isn't and it seems
so unbelievable. And whether consciously or just looming out of sight,
the thing is always there, a weight, an ominous shadow, a dull ache,
sometimes drawing tears and at other times a glazed look or frown of
disbelief from deep inside.

Home again

We're home again but it's not much fun, with all the reminders of Ben
around us. If you are interested, the funeral service is online and
includes the moving prayers by Michael and Penny. Also online is the
sermon and the eulogies by Tim and Chris.

What a day! Now it's time to rest.

By all accounts I think we sent Ben off well yesterday. Many people
said he would have approved. The music was fantastic, everyone who
helped in many ways did a great job, the weather was perfect (overcast
but dry and just enough wind to blow the flower petals around when the
coffin left the church), and I was dressed in a half decent suit and
polished shoes. If you weren't there and don't understand the
reference to my clothes you'll have to read my eulogy. Links to the
program including eulogies will be posted on the blog in a few days.

And now it is time to rest. We are heading off to Pt Lonsdale until
Friday. So the blog will be silent until the weekend. Feel free to
send your comments but they will probably not appear for a few days.
We look forward to more blogging so don't go away!

Finally: if anyone took any photos yesterday at the funeral we would
love a copy. Thanks.

14th December 2008 – Worshiping the Lord Jesus Christ and thanking God for Ben Mulherin’s life

Coldish day – St Jude's Carlton, Melbourne – 650 people filling St
Jude's church to standing only and then into the hall – tears as
people arrived and walked past the beautiful brown and silver casket
in the hearse outside the north entrance - Lindy and Chris welcoming
Ben's loving family and friends – 6 friends waiting to carry his body
to the front of the church - the sun broke out, silver trimmings on
the casket shone as they moved Ben's body into the church – silence as
the casket was carried along the left aisle - tears and tissues and a
beautiful portrait of Ben projected onto the screen for all to see –
another placed on his casket by Lindy and Chris - magnificent modern
songs of worship sung at full voice with a tight band – spoken and
demonstrated signs of love by family, friends, clergy – more
magnificent praises to our Lord – Amazing Grace almost lifting the
roof – white petals thrown into the air over the casket as a "bald"
six carried him along the right aisle – faces with tears and smiles
and singing voices – loud really loud – casket into the gold hearse
and respectfully slowly driven away – lots of food – Ben you missed
out on the tucker :-) ☺ – white cards to write memories of Ben – envelopes
for bone marrow research - happy voices and animated chatter
throughout the afternoon tea – sun shining as we left – we mourned,
worshipped, remembered and thanked.
By Jill and Colin

Ben's Funeral

Please join us this afternoon to celebrate Ben's life and to mourn his death:

Sunday December 14, 2pm
St Jude's Anglican Church Carlton
Cnr Palmerston and Lygon Streets

There will be a cup of tea or coffee after the service.

This evening from 7pm, anyone who would like to share with us at home
is welcome. Bring some meat for the barbecue and something to drink.
We will share some stories and some photos of our time with Ben. If
you don't know where we live, ask us by email:
BensGotCancer@gmail.com.

Surreal - from Tim

Surreal…

Not “surreal but nice” like in Notting Hill, just surreal…

Words do not do it justice and emotions are hard to understand, if there are any at all.

Phrases like “it’s going to be ok” or “you will get through this” are said with good intentions but how can we expect to be able to just put something behind us that has taken 23 years to build, in a few days, weeks, months or even years? I don’t think it would be honouring Ben’s life if we just try to move into a new chapter straight away without writing a well thought out conclusion for this one.

The question is how to do that and how long will it take. There is no formula and it will be different for each individual.

I know for myself that how I’m feeling at the moment is only the tip of the iceberg. Even though I know I’m not dreaming, it still feels like Ben’s just going to be away for a while. But the thought of never seeing him again is one too hard to imagine.

Thanks for the support and prayers and for taking this tough journey with us.

An empty place at the table

Tonight we sat down to our first family dinner this week. We politely told others that we would just be family tonight: it was time to regroup. And there were only six of us.

Ben at Tallandowring - the Grandparent perspective

Ben was a grandson too. Ralph and Wilga Clarke have written some reflections on their oldest grandson. Because of its length it's attached as the first comment on this blog. Below are Ben, Tim and Andy at the farm... guess who's in charge.

Quiet thanks - from Chris

As each email or comment arrives and I know we can't reply this week ... I say quietly under my breath and often with a tear: Thanks Catherine or David or Enrique or Jimena or Marina or Stephen or VT or Adele or ...

Thanks.

The road not chosen - by LA

This is a road we never would have chosen. So when people ask how are we coping we just say: well we didn't get a choice. It is such an awfully awful situation that it doesn't seem 'real' at least half the time. When the truth suddenly confronts us we weep and wail and wonder how we will keep going in a situation like this. But we will keep going and we hope we will be able to be more loving and more kind because of the suffering.

This week has been a blur and flurry of organising and liaising with professionals involved in the funeral. Chris in black humour mode today, stood in a formal wear hire place and said how difficult it was to have a darling son die on a Monday and have to try on clothes on the Friday. As he grumbled and smiled at the same time we remembered Ben and how appropriate and good quality clothing mattered to him. He would not have been impressed if Chris dressed in a poor fitting op. shop suit with the trouser legs too short: he would approve of the hired black and well fitting suit.

All the emails and SMS's, cards, meals and flowers are keeping us feeling surrounded by people's care and concern. It helps a lot. Thankyou.

Memories

Blogotherapy - from Chris

It was Ben's idea this blog. If you don't remember you'll have to go down the page and find the first blog posting less than 6 weeks ago. It's a very public way of charting the journey that finishes where we feared and expected it would. But how therapeutic it seems to have been. According to the counter at the bottom of the left hand column, over 1000 people visited the blog on Monday and in total there have been over 26 000 'visits'. Many people have told us of how helpful it has been.

But let me assure you, it is a mutual arrangement. It has meant so much to us to be able to be in touch with all those who loved Ben and to be able to simply 'talk' to you. Thank you so much.

We started the blog anonymously at Ben's request: no surname, no location, no hospital name. And also at Ben's request we named it "Ben's Got Cancer". Ironically Ben knew very little more about the blog because he was in hospital without internet access from the beginning. Although I think he actually wanted it that way: it was to be a conversation between the family and friends.

So can I ask you a favor? Please don't leave us just yet. There are still things to be said and perhaps comments to be made. If you have tried unsuccessfully to leave comments, you could send an email to BensGotCancer@gmail.com perhaps with the subject "Comment from..." and we will publish it in the comments section.

One day in the next few weeks or months this blog will close or simply fade into disuse. But not yet. Our grief is helped by being able to share with you. What started out as efficient communication has become hugely therapeutic for us and many of you. So let's continue the conversation a little while yet. And one day we'll ponder the philosophical and psychological implications of such public sharing of such private moments. Perhaps it's a 21st century version of the extended and very public grieving common to many cultures?

Meanwhile, for those who are interested, an autopsy is being performed on Ben's body in order to learn as much as possible about the cancer. We are preparing for the funeral on Sunday; an unconventional day for funerals but one when we hope many will be able to join us. And we are all grieving in our own ways: personally I look for moments away from others when I can allow the deep ache inside me to well up in silent and sometimes noisy tears. They are silent right now and I am struggling to read this text. Thank you for listening.

Ben, 2004, after finishing his first marathon.

Thoughts - by LA

We find ourselves asking ‘how’ more than ‘why'. How did a young, fit, so very much alive young man get so sick so quickly? How could the cancer sneak up so silently? Just six months ago there wasn’t a cloud on the horizon.

Ben kept saying in these last few weeks that he would be fine but that it was ‘crap’ for everyone else. Right up to the last he was keen to make sure we were all OK. But when asked this week if he was worried at all for himself he finally nodded. Have no doubt. It was crap for him; more than for us. His ‘crap’ just ended more quickly and irreversably.

Something that kept him going and kept him hoping was that his fight would be an encouragement to others. His faith was strong and he knew where he was going. He was incredibly brave and uncomplaining.

May it all not have been in vain. We keep praying that great good will come out of great pain and loss.

I shall write another time with a list of thanks… In the mean time: Thanks. LA

Rest in peace Ben

(Monday December 8th, 6pm)

This afternoon Ben went to be with his Lord. After a short six month battle with NK cell lymphoma Ben has gone to a better place. As he said, he'll be fine but it's deeply sad for the rest of us. (Not quite Ben's words...)

Even after being put into an induced coma and intubated yesterday his body progressively lost its ability to function. By this afternoon, he was on drugs for his blood pressure and the respirator was breathing for him on 100% oxygen. Even so his lungs were not functioning enough to supply his body. He died peacefully without pain or discomfort at about 3.30 this afternoon.

We will write more later, but in the meantime: Thank you so much to everyone who has cared and prayed and sent messages in the last few months for Ben as he fought the good fight.

Funeral details are on the left of this page.

"He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain for the old order of things has passed away."
Revelation 21:4

Time to rest

Ben is asleep again. The last 24 hours have been more difficult as Ben struggled to get enough oxygen and his temperature climbed. An hour ago the doctors decided that the best thing was to put him into an induced coma again and let him rest.

But unlike the last time two weeks ago, Ben was completely conscious and able to give his consent. Here's a wave to his friends before sleeping.

Sleep well Ben.

Who needs the surf? - by LA

Debbie the lovely physio approached Ben's cubicle in ICU this morning with a very large black iron structure suggestive of some kind of torture instrument. Debbie wanted to take him for a walk around the ward with it. Ben was definite in his short reply. "No! I'm going for a walk with James."

So there we were outside the hospital, Ben in his ICU bed with monitor and oxygen all connected. His 'walk' with his nurse James was reminiscent of 'Bed knobs and Broomsticks.' (It's a Disney movie from the dark ages. Treat yourselves if you haven't seen it.) No wonder he didn't want to go for a walk with Debbie. He slept soundly through the first half hour of his 'walk' outside, despite James, TC, Alice and I all trying to wake him up. James said he had been looking forward to going outside all morning so we were all disappointed for him.

Suntanning sleeping beauty (click the photo for the detail)

But he did wake up, and I reckon he was as happy as some of the happiest moments of his life. He said it was perfect and he meant it. He almost managed a smile. A gentle breeze, very warm sun and a pair of sunglasses was all he needed and all he wanted. His exhausted 'thanks very much' to James said it all. We think he will be the only patient to leave ICU with a suntan better than when he arrived. He's looking forward to doing it again. It was a big effort for James and we are very grateful to him, Ben especially.

Good afternoon - from Chris

TC and I have just arrived home from the hospital. It's after midnight Friday night and Ben's had a good afternoon. The four older boys watched Fugitive (a family favorite) after lunch. Then MD went in after school and he and Ben and LA watched an MD-rated movie. 

Gret came on for night shift and that was another high point. She decided Ben could do without the face mask for a while and replaced it with nasal oxygen prongs. At last he was free to speak without hissing and plastic distractions. 

Another highlight was when Katrina arrived from ward 3W with the particular icy poles Ben was craving. I arrived at the hospital about 10.30pm and was sent on a secret errand to buy Powerade powder because Gret said she couldn't find it anywhere. We found it eventually in the second Safeway we tried and Gret loved her present. We left the lad peaceful and looking like he might sleep at last. What a great afternoon!

"I'll be fine."

This afternoon Richard and Rob, ministers from our church, visited Ben to pray with him. Although he’s been a bit confused he seemed to be on the ball for the time together and his humor and timing were impeccable.

Richard talked about the possibility of Ben dying and the firm Christian hope of being with God. Thinking about his own death, Ben said: “It will be crap for everyone else. I’ll be fine. I’m just worried about other people.”

I was teary at times and at one stage Ben slowly took off his oxygen mask and pushed it towards me. I thought he was confused and told him he needed to keep the mask on. He said: “You look like you need it.”

Richard talked again of facing death with faith and said, “This is where the rubber meets the road.” Ben replied slowly but without hesitation, “It’s just doing it really slowly.”

Before leaving Richard asked if Ben had anything else he wanted to say. Ben asked, “Is it wrong to discard the hope of getting better?” I think he was asking the question so many of us are asking as we live with the tension between praying for healing but also facing the reality of Ben’s possible death.

Richard read from the Bible, Romans chapter 8:

I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. We groan inwardly as we wait eagerly for our adoption as children, the redemption of our bodies ... We know that in all things God works for the good of those who love him, who have been called according to his purpose ... What, then, shall we say in response to this? ... Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? ... For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

Is that a wave I see?

Lunchtime Thursday: Ben is still in Intensive Care and won't be going back to the ward until tomorrow at least. He's got a temperature again, a high heart rate and he's a bit confused at times. It's likely that he will have a liver biopsy soon to confirm whether the lymphoma is active in the liver.

And the winner is...

And the McC family wins the prize (see the comments on the previous post)... only 4 minutes ahead of Jill (well done Jill but sorry, you'll have to play again another time. And anyway: you're a nurse so you should have known!).

Yes, they are called tusks. And the prize? Chicken Townhouse of course: with banana, bread and butter. Enjoy!

Jokes - from LA

Can anyone guess what the blue things are called? Please let us know what you think. If you already know, sshh. Don’t tell anyone else. Apparently a coma doesn't stop nails from growing: Ben has ordered nail clippers tonight to deal with his long fingernails.

Yesterday as Ben was coming out of his sedated state he was cerebrally irritated. Noise of any type was intolerable. Lying on his back and with an oxygen mask over his face he called out loud and long: “No…….” He put his hand to his head in despair and said again “No! No jokes.”

I felt the small flicker of creative genius being snuffed out. Doubts crept in. Was this a reflection of Ben’s mental state or was it rather, a reflection on the quality of the jokes and the lack of talent in the joke teller? Despite my wounded ego life goes on and Ben is causing his own laughs today as he communicates with his brothers using the family salute.

In the next day or so they are hoping to move Ben back to 3W, his normal ward. Katrina from 3W visited Ben today (photo) and he told her that he would only go back if he could have a single room. Mmm...


(For the lawyers: all photo subjects have agreed to being blogstars.)

From Meg and the Sydney Morning Herald

The sleeper wakes

This morning the doctors turned off the sedatives and Ben woke up. The tube was taken out of his throat and he is breathing normally with some extra oxygen. He's not comfortable and needs some reconditioning but he is himself. We are very grateful to all the great staff in ICU. (Thanks Casey and Co: excellent work!)

Meanwhile his LD levels continue to rise, he still has a temperature and he needs daily infusions of platelets. None of which are good signs unfortunately.

It's Chicken Townhouse again for dinner tonight. Yes!
Chris

LD levels are high - from Chris (Monday afternoon)

Ben is progressing well according to the Intensive Care doctors. This
means his breathing is improving and he should be able to be weened
from the breathing tube tomorrow or Wednesday. He has semi-conscious
moments when he can obey simple commands, but mostly he is fast
asleep.

Unfortunately he has a temperature returning and his LD (Lactose
Dehydrogenase) levels are rising. This is not good news as it may well
indicate the cancer is at work. If it is, it means the chemotherapy
has not done the job. If this is the case then the outlook is very
grim as there are few medical options left.