Listening to Vicky and Emma these past weeks and days has been heart breaking. They are mums who are victims of a massive scandal of misinformation and miscommunication around cervical cancer and who now find themselves living with terminal cancer. With advances in treatment their cancer should be the least significant thing in their lives and it should absolutely not be the thing that will cause utter devastation for their families.
That would be a wish that all of us mums with cancer would have – that it would not devastate our families by taking us away from them.
When you go for screening for any illness or when you have a suspicion that something is wrong in your body, you want and need the experts around you to act with haste. You want all the tests that there are so as you can get to a diagnosis as soon as possible. Ultimately you want a timely diagnosis and a treatment plan.
When you are in the middle of treatment for a serious illness you want to know that you are getting the best of care and the newest and most effective drugs. You want to know that there is no delay in any aspect of the treatment and that no one is found wanting in their duty of care towards you. You want to know that every single person in your chain of care is throwing everything including the kitchen sink at your illness!
When you do find out you have cancer, as a mother, your first concern is your family and specifically your children. You immediately move your needs down the pecking order and think of your children first and then your husband and partner. Practical issues come to the fore:
how should you best break the news to children?
do you need to tell their schools?,
do you need to involve the parents of your child’s friends?
Time becomes an issue as you want your kids to hear the news of the diagnosis from you but you need time to come to terms with the news yourself. Then your thoughts turn to managing the illness and the treatment so as you can still be Mum/Ma/Mammy/Mother.
More practical things come to the fore as you face into active treatment and time in hospital as inpatient or in the day ward:
Who will do the school run that is usually done by you?
Who will make sure the white shirts continue to come out white in the laundry when your husband has a habit of putting everything into the same wash at 60 degrees?
Who will read to them before bed when you are away in hospital and your husband is with you?
Who will know how they like to be held when they are ill/sad/hurt/scared?
Who will make their lunch just the way they like it?
When you are dealing with an incurable cancer that has the potential to be the thing that kills you, you start to do the maths and make bargains with yourself and even with God:
please just let me live until they start school or finish school.
Please let me have time to allay their fears and concerns
Please let me hang on for the small milestone
The maths and the bargaining increase as you move on in treatment. Time is everything. When you are coming to terms with a diagnosis of incurable cancer or terminal cancer you want to know exactly how much time there is. It’s not time to go to Disneyland or on some grand cruise, it’s ordinary everyday time to make memories and mischief with your kids. To make sure that himself knows where everything important – like birth certs and their first drawings are; to have time to listen to what the kids need to say to you; to tell them every day that you love them; to write letters to them; to close out loose ends, to just sit with them and try to impart a lifetime of stored up wisdom and guidance that you have been saving for them as they grow up. Time is everything.
As a working Mum you worry about financial security and the extra financial burdens on the family if the worst should happen. You want and need time to make lists and to plan – that’s what us mothers do!
I am that mum who was told she has incurable cancer. My presentation with concerns was taken seriously and I was given blood tests that day. I was in hospital that night and had a diagnosis within eight days.
The date I got the news was 10 January 2007. I was 38. I was in the same age range as Vicky and Emma are now. My kids were aged 9 and 2.
It was a stark diagnosis. Myeloma is incurable but treatable to a point but with no absolute guarantees of success. I was horrified and terrified each time I thought about not being around for the kids and for Bryan. The first question and fear I had was whether Cathal would ever remember me as his mother as he was only 2. Then I had frustrated and angry tears at the thoughts of Emma going through her teenage years without a mother to argue with and to confide in. And then I had to look Bryan in the eye with my diagnosis and try to find the words to express the lifetime of love we might never have because of the cancer.
The day after the diagnosis we knew the plan of treatment and the goals we had to achieve to try and get out the other side of an incurable cancer. While the treatments are well tested and used more and more every day, I was a member of a really exclusive cancer club – only 222 people are diagnosed every year with my cancer here in Ireland and only 2% of all those diagnosed with myeloma are under the age of 40.
The treatment began in earnest on 11 January 2007. It was a year long process from initial treatment and chemo; to stem cell harvesting; and then in July 2007 a stem cell transplant. The treatment was harrowing and difficult and there were times where there were some doubts about whether I would come through it fully. I was gravely ill as a result of the side effects of the high dose chemo.
After a month in isolation, ten weeks in total in hospital, I was told I was in remission – the date was 26 September 2007 and it felt like I was being given back my life for myself but for my family too.
We did nothing extravagant to celebrate – we were emotionally exhausted, drained from the relief of the news and I had a long road ahead as I was physically very week. Even after the word remission was spoken, I was told there were no guarantees.
Eleven years later I am still here living with an incurable illness. The nine year old is now 21 and has just finished college. I have gotten to see her blossoming into a beautiful young woman. The two year old is now a handsome young man of 13 (almost 14) and he is just finishing his first year in secondary school. I have had the luxury of time.
I feel so frustrated and almost guilty that I get to have time that some of these other beautiful and brave women caught up in the cervical cancer scandal did not get/might not get and will not get. I am so angry that the people who were charged with looking after us, did not do their jobs.
That beautiful and brave young mother Emma’s words from her Morning Ireland interview this morning will haunt me forever as she has the same fear about her kids remembering her after she is gone. I shared that fear about whether the kids would remember me and would know that they had a mother who loved them and who was proud of them every day of her life.
My daughter wrote this poem about me and it captures the essence of what she would have been prepared to do if I had to say goodbye. My daughter Emma would have been prepared to ‘dream of a heaven without her for me’ and she would have made sure that her little brother would have known about me and never been allowed to forget me….
There are no words I can say to Vicky, to Emma and all the other women other than I’m sorry. I am so sorry and so angry that you have all been so badly let down……that those people who should have been fighting for you and your survival have utterly failed you….I am so sorry. I hope that you will continue to fight and to make memories with your families……We will all do our best to make sure you are never forgotten….
In Heaven There Are Beaches
a poem by Emma Tobin
When I was nine you turned into a skeleton,
and disappeared, new car with uncomfortable
seats. I forgot where I parked you and our souls
entwined in some bloody and primordial
place threatened to rattle apart like trollies
in hospital corridors that never go anywhere.
Speaking of going places I wondered, where,
as you dwindled and ruptured and women in off-green
cheerfully hooked you up to hang on the edge
of existence. You lied to me about what was
wrong but reflected in your bloodshot eyes I
dreamed a heaven without me for you.
Even though such a place could never exist, futile
among the strangling wires of your life
lines. They pumped you full of chemical bullets
to kill the monster inside you and I watched
like a child (I was a child) unwilling to admit
that mothers should die first.
The inside of your mouth a battlefield of bloodied
flags wedged between your molars, God spurting
from your nose. Your face a scar-flecked landscape where
there are no words for watching your mother cave in.
Bailing water out of her stomach, you taught me
to swim and now I watched you drown.
You were some grand theatre I watched from
the doorway hiding hands in my pockets. I
was afraid you’d see the ghosts of funeral
handshakes. You were not a woman we would
not bury a woman, but the soul of everything
I wanted to be.
My friends were scared of turning into their
mothers but mine saw God in bloodstains and
mine almost slipped between my fingers. They
were small fingers I imagined them raising
your son and fixing the collar of his school
uniform. I’m sorry I imagined.
I would have told him that you were like
beaches and tides you were a love that
always came home. You would wear us
smooth until we shone and take us away
in your pockets. He would have known
that you’d leave heaven for him.
When I was ten they sent you home in gauze
and I did not trust your bones to hold
you together for years. I snuck around you
with scaffolding and glue until I could
shout at you again. Not the big bad wolf
your daughter who couldn’t blow you down.
I did not always believe in this, your shadow
on the other side of glass your shoes on the stairs,
your voice somewhere nearby. I think I might be
imagining you sometimes I think I might be mad.
I think we might be alive.
Those of us who were teenagers in the 70s and 80s, grew up without technology as we know it today. We had a vastly different experience to the age of digital and technological disruption that we all find ourselves living in today.
I grew up in a family of five siblings in a small town in Co Cavan. We had no telephone in the house. We had one colour television and the act of watching television was mostly a family affair. We had a small black & white television for when Top of the Pops clashed with something my parents wanted to watch.
I had the opportunity recently to reflect a little bit on just how disruptive technology has been when I was invited to speak to 600 teenagers about social media and technology.
When I described my teenage experience of technology and the lack of a landline many of the young people told me that they just could not imagine a house like that.
Then I described the list of technology in my home today and most of the young people said they had the same sort of list and some had even more technology. The list in our house includes a landline, smart TVs, game consoles, smartphones, Apple TV and Netflix. We even have a washing machine that plays music to announce when a cycle is finished.
There are also smart vacuums that you can programme to clean the floor by themselves and apps that allow you to ‘communicate’ with your pets when you are out of the house and to use technology to release a doggie treat for them! [I feel I should clarify here that I don’t have a smart vacuum or a dog!]
I do believe that our technological advances are positive but I also believe that the way many of us are using technology has impacted negatively on quality family time.
Take the television – everyone wants their own screen, or to sit and watch something when it suits them. In many cases we no longer sit down to watch TV together. Then there’s the arguments between husband and wife when one person goes ahead in a box set or Netflix show without the other!
Look at social media – I do believe that it has been and can be a positive tool for communication and networking. But, as a parent, I can’t ignore the headlines about children and young people being bullied or children as young as 11 taking their own lives because they are not seeing in their mirrors what is being reflected back at them from the ‘perfect’ lives of their idols on social media.
The example that many of us adults and parents give in our own consumption of technology is less than perfect. I see so many couples out for a meal together looking at their phones instead of each other. I see parents ignoring their kids because they are too attached to their smartphones.
A recent survey showed that Irish adults who have smartphones check their phone a minimum of 10 times a day and that 34% of men and 17% of women smartphone owners check their phone up to 40 times a day.
Pope Francis has spoken often about the many benefits of technology and social media, he uses it well himself! But, he recognises that over-reliance on its way of managing our lives can lead to an expectation that human relationships can be managed in the same way as social media, and can be switched off and reconnected at a whim.
He has also spoken about how young people are bombarded by social media messages that are not beneficial for their growth and maturity. He has said that young people, in particular, need to be educated to recognise the values of social media for what they are.
The family home is where children first learn about God. Parents hand on faith and life lessons to their children not only by what they say but, more importantly, by what they do and how they treat others both inside and outside of the home.
This includes their example and stewardship of technology in the home. This also includes the online spaces we inhabit.
The family is precious. Technology is everywhere, so let’s use it well and do all we can to protect our quality family time.
ENDS
This article is courtesy of Intercom Magazine, in which I write the monthly Get Connected column. This article was first published in the April 2018 issue of the magazine.
From time to time I remember to share what we are up to as a choir. Well the latest update comes in the form of a press release! Bishop Denis Nulty is going to launch a brand new Mass setting composed by Padraig Meredith. We have been rehearsing the new Mass pieces for weeks now and next Sunday is the big day. Here’s the story:
Bishop Denis Nulty, Bishop of Kildare and Leighlin, will launch a new setting of the Mass by Kildare composer Padraig Meredith on Sunday 26 February. Mass of the People will be presented for the first time in Saint Conleth’s Parish Church, Newbridge, Co Kildare and it will be performed for the first time by local choir ‘In Caelo’ under the baton of Cora Coffey, Musical Director.
Mass of the People includes new settings of the pieces sung/spoken at every Mass – the Kyrie, the Gloria, the Gospel Acclamation, the Holy Holy, the Memorial Acclamation, the Doxology & Great Amen, and the Lamb of God. The Mass will also feature two additional pieces by Padraig Meredith including the first performance of a new psalm entitled In God Alone and a new Communion hymn Our Blessing Cup which will be performed by soloist Teresa Lynch.
Commenting on how he came to write the new Mass setting, composer Padraig Meredith said, “The Mass came about through my long association with ‘In Caelo’ choir and their Musical Director Cora Coffey. I have written many Church pieces, but I never had the kind of response from performers which I receive every time I bring ‘In Caelo’ a new piece. I wanted to thank the choir for their support over the years by composing a special piece for them, but that didn’t seem enough so I decided to compose an entire Mass setting for them. The setting is called Mass of the People because it is a gift not just for ‘In Caelo’, but for all the parishioners of Newbridge.
Padraig went on to say, “I have worked in Newbridge Parish for the past twenty-four years, first as an altar server, then as a junior sacristan, as a helper on the annual Lourdes pilgrimage, and as a choir member singing with the tenors in ‘In Caelo’. I went on to play piano for ‘In Caelo’ and eventually turned to composing for them.
“I have proudly represented Newbridge Parish at four World Youth Days in Toronto, Cologne, Sydney, and Madrid. Outside of our diocese I have also represented our parish at the 50th International Eucharistic Congress in Dublin in 2012 as a pianist and member of the chamber choir, and I also composed the official anthem for the Dublin Archdiocese Year of Evangelisation.”
Padraig went on to share some of the spirit of his local parish, saying, “Newbridge parish has a spirit which is unlike another parish. I love liturgy, all types of liturgy, from the joy of a Christmas Eve or Easter Saturday liturgy, to the sombre and muted mood of Good Friday. Whether it is a joyful or a sombre occasion Newbridge parish is able to achieve in communicating a warm, peaceful, calm, and reflective mood. Our parish church is a place of welcome, light, warmth, and heart. My Mass setting tries to capture the various moods of the Church calendar. Each piece has a separate character which matches the tone of that moment in the liturgy where it is placed. The Mass setting tried to achieve a goal of being inclusive for all the congregation by (hopefully) being ‘singable’ by everyone. Hopefully the congregation will leave the liturgy happy and humming!”
Speaking ahead of the launch of the new Mass, Father Paul Dempsey, Parish Priest of Saint Conleth’s Parish, Newbridge, said, “Sunday, 26 February marks a significant day in our parish diary as we launch Padraig’s Mass of the People. Down through the years Padraig has been most generous in giving of his time to enhance the liturgy in the parish through his musical talent. He is a very gifted musician and we are extremely fortunate to be able to draw on this giftedness in Saint Conleth’s. As the Church faces many challenges in a changed and changing culture, many people drift along as many familiar anchors in society have disappeared. As a Church we must respond by inviting people to participate in the liturgy – a liturgy that is vibrant, joyful and well prepared, a liturgy that will touch people’s hearts and help them experience the deep love of Jesus Christ. Good music is critical to this and contributes to the Eucharist being the ‘summit and source’ of the Church’s life. Through his new Mass setting, Mass of the People, Padraig is making a major contribution to the life of the Church in Ireland today. I wish him every blessing and thank him for sharing his gifts so generously with us here in Saint Conleth’s Parish.”
The Musical Director of ‘In Caelo’ is Cora Coffey, and the ensemble for Sunday 26 February will include composer Padraig Meredith on piano, Caroline Sutton on violin, Derek Duffy on guitar, and Mary Farrell on Irish Harp.
Commenting ahead of the launch Cora Coffey said, “In Caelo has come a long way since it began in 1997. Myself and Padraig were original members of the choir. We all knew that Padraig was destined for greater things and he has proved us right! ‘In Caelo’ are honoured that he has chosen us to perform his beautiful new Mass setting. I wish him every success for the future and ‘In Caelo’ looks forward to many more collaborations with him.”
Padraig Meredith studied music earning a B.Mus. degree from UCD, a G.Dip.Ed (Music) from University of Limerick, an ADV.Dip.PD (Inclusive Education) from Queens University Belfast, and an M.Mus. Masters in Musicology from UCD. He works as the Music Teacher at the Holy Family Community School, Rathcoole, and spends the rest of his time working as an accompanist and session musician in a variety of genres from Church to choral to rock music. He composed the theme song for the Dublin Diocesan ‘Year of Evangelisation’ called Raise Your Voice. He also composed the score for the Irish dance and musical theatre work The Cloak, along with writer Padraig Dunne, which is based on the life of Saint Brigid.
‘In Caelo’ is one of the parish choirs in Saint Conleth’s Parish in the Diocese of Kildare and Leighlin. The choir has been in existence for almost 20 years. The choir of 44 members comprises men and women from Newbridge and surrounding areas. ‘In Caelo’ is a four part harmony choir and they sing at the 12.30pm Mass in Saint Conleth’s Parish Church every second Sunday.
“Music expresses that which cannot be put into words and that which cannot remain silent”
― Victor Hugo
A friend asked me recently about the 10 songs that helped me through cancer. She said that it might be interesting to share as part of my #10thingsfor10years project to mark 10 years living with cancer on 10 January 2017.
Music has always been a huge part of who I am. It formed me from I bought my first record aged 11 and has been a constant companion since then. I love music – no particular genre has dominion over another. I am mostly about the lyrics and if the song is something that speaks to me in a particular way at a particular time then it gets added to my list!
I listen to music on the radio, in my car, in my ears as I am out and about. I just invested in a new old record player and I am recreating my vinyl collection. It’s a joy.
Back in 2007 I was mostly listening to music on the radio and on my iPod which had hundreds of my favourite songs on there.
I can go from Bread to Prince, from David Bowie to Carole King, from Stevie Nicks to Ed Sheeran and all in the space of one playlist.
But to get back to the question I was asked about the songs that spoke to me most during 2007, those 365 days I had to give over to fighting cancer. Here they are in no particular order of favouritism:
Chasing Cars – Snow Patrol
This song was on the airwaves in 2006 and it was a huge hit for Snow Patrol. My then two year old son loved it and he used to sing the verse with me and was so cute trying to get the words out in time to the music. Cathal was a huge fan of dinky cars and trucks – anything with four wheels. He would investigate cars and would try to sneak out to one of our cars whoever he could. This will always be a song that reminds me of him.
The song was always on radio playlists in 2007 and anytime I would hear it on the radio or on my iPod, it would remind me of Cathal. It also featured in Grey’s Anatomy and I used to watch that a lot in those days – you would think I would have enough of hospitals.
I love the lines ‘Let’s waste time, chasing cars…..’ I also love the line ‘I don’t quite know how to say, how I feel….’
Here are the full lyrics or you can listen to the song here
We’ll do it all
Everything
On our own
We don’t need
Anything
Or anyone
If I lay here
If I just lay here
Would you lie with me and just forget the world?
I don’t quite know
How to say
How I feel
Those three words
Are said too much
They’re not enough
If I lay here
If I just lay here
Would you lie with me and just forget the world?
Forget what we’re told
Before we get too old
Show me a garden that’s bursting into life
Let’s waste time
Chasing cars
Around our heads
I need your grace
To remind me
To find my own
If I lay here
If I just lay here
Would you lie with me and just forget the world?
2. Sky Blue and Black – Jackson Browne
Jackson Browne is one of my all time favourite singers, lyricists and performers. I discovered him in the early eighties and I have been a huge fan ever since. He would fit into the same compartment for me as Bruce Springsteen and the Eagles but his voice is unique, distinctive and it leaves me speechless. I have a lot of Jackson Browne on my iPod and he was one of the people I listened to most when I was lying in my hospital bed too weak really to do anything other than listen.
I was really struggling to decide which song helped me more while I was sick. I am a huge fan of lyrics and I can sing along to most songs from the 70s, 80s, 90s and now. This Jackson Browne song wins the lyrics award every time. The lyrics are just sublime
In the calling out to one another
Of the lovers up and down the strand
In the sound of the waves and the cries
Of the seagulls circling the sand
In the fragments of the songs
Carried down the wind from some radio
In the murmuring of the city in the distance
Ominous and low
I hear the sound of the world where we played
And the far too simple beauty of the promises we made
If you ever need holding
Call my name, and I’ll be there
If you ever need holding
And no holding back, I’ll see you through
Sky blue and black
Where the touch of the lover ends
And the soul of the friend begins
There’s a need to be separate and a need to be one
And a struggle neither wins
But you gave me the world I was in
And a place I could make a stand
I could never see how you doubted me
When I’d let go of your hand
Yeah, and I was much younger then
And I must have thought that I would know
If things were going to end
And the heavens were rolling
Like a wheel on a track
And our sky was unfolding
And it’ll never fold back
Sky blue and black
And I’d have fought the world for you
(I’d have fought the world for you)
If I thought that you wanted me to
Or put aside what was true or untrue (true or untrue)
If I’d know that’s what you needed
What you needed me to do
But the moment has passed by me now
You have put away my pride
And just come through for you somehow
If you ever need holding
Call my name, I’ll be there
If you ever need holding
And no holding back, I’ll see you through
You’re the color of the sky
Reflected in each store-front window pane
You’re the whispering and the sighing of my tires in the rain
You’re the hidden cost and the thing that’s lost
In everything I do
Yeah and I’ll never stop looking for you
In the sunlight and the shadows
And the faces on the avenue
That’s the way love is
That’s the way love is
That’s the way love is
Sky, sky blue and black
Now listen to the song. The music and the lyrics and the voice just give me chills. This is a live acoustic version of Sky Blue and Black. I have never seen Jackson Browne in concert but in the most wonderful coincidence, Jackson Browne will be here in Ireland for a series of concerts in June of this year and I have tickets! It’s going to be another wonderful way of celebrating 10 years being cancer free. This is definitely on my bucket list of gigs.
3. The Cloud’s Veil – Liam Lawton
I like sacred music, liturgical music, religious music, choral music and I have quite a lot of this type of music on my iPod. I adore the Liam Lawton album Another World. It is a lovely mix of Liam himself singing and then the wonderful guest artists like Brian Kennedy and Moya Brennan. One of my favourite pieces on this CD is The Cloud’s Veil. The vocal is haunting and the lyrics are wonderful:
Even though the rain hides the stars,
even though the mist swirls the hills,
even when the dark clouds veil the sky,
God is by my side.
Even when the sun shall fall in sleep,
even when at dawn the sky shall weep,
even in the night when storms shall rise,
God is by my side.
God is by my side.
Bright the stars at night
that mirror heaven’s way to you.
Bright the stars in light
where dwell the saints in love and truth.
Deep the feast of life
where saints shall gather in deep peace.
Deep in heaven’s light
where sorrows pass beyond death’s sleep.
Blest are they who sing
the fellowship of saints in light.
Blest in heaven’s King.
All saints adore the Lord, most high.
This was a song that already had meaning and resonance for me as it had been the recessional song for my beloved Gran’s funeral in May 2006 just months before I was diagnosed with cancer. I was still at the stage where hearing it made me think of her and made me cry. It was a huge part of helping me process my grief. It will always be the piece of music that reminds me of her and it was a huge comfort to me when I was sick and away from family and friends in the hospital. When I found myself wanting to pick up the phone to speak to my gran, I would play this piece from Another World. This is a link to a live performance of The Cloud’s Veil by Liam Lawton.
The Cloud’s Veil became especially popular in the USA at the time of the 9/11 tragedy and featured frequently at Memorial Services for the 9/11 victims. Consoling music will always travel far and wide and that is the case with this song.
4. I can see clearly now – The Hot House Flowers
I loved the Hot House Flowers when they were in there Don’t Go phase of music in the late eighties and early nineties. They were huge. Liam Ó Maonlaí was the heartthrob of the moment and his voice is one of the most clever musical instruments I have ever heard.
I was driving home from Tallaght Hospital one day in 2007 after a whole day of tests and treatment and I was feeling low and tearful. I was just pulling onto the N7 when the song I can see clearly now came on the radio. While the Hot House Flowers are not the ones to write or originally record this song, their version is the one that came on the radio.
Suddenly it just lifted me out of my sadness, worry and tearfulness. It just made the world feel a little better in that moment in time. It also made me remember the time I was chatted up by one of the original band members of the Hot House Flowers back in the nineties, but that’s another story for another time!
These are the lyrics and you can listen to their version of the song here. Oh and somewhere along the way I have become friends with Liam on Facebook!
I can see clearly now the rain is gone
I can see all obstacles in my way
Gone are the dark clouds that had me blind
It’s gonna be a bright (bright)
Bright (bright) sunshiny day
It’s gonna be a bright (bright)
Bright (bright) sunshiny day
Oh, yes I can make it now the pain is gone
All of the bad feelings have disappeared
Here is that rainbow I’ve been praying for
It’s gonna be a bright (bright)
Bright (bright) sunshiny day
Look all around, there’s nothing but blue skies
Look straight ahead, there’s nothing but blue skies
I can see clearly now the rain is gone
I can see all obstacles in my way
Here is that rainbow I’ve been praying for
It’s gonna be a bright (bright)
Bright (bright) sunshiny day
It’s gonna be a bright (bright)
Bright (bright) sunshiny day
Bright (bright), bright (bright)
Bright sunshiny day
It’s going to be a bright (bright)
Bright (bright) sunshiny day
It’s gonna be a bright (bright)
Bright (bright) sunshiny day
It’s gonna be a bright (bright)
Bright (bright) sunshiny day
5. If I Should Fall Behind – Bruce Springsteen
This song kept popping into my head those first days in hospital in 2007 when I was newly diagnosed with a cancer they cannot cure. I adore this song. It’s a unconventional love song from Bruce Springsteen. Apparently Pierce Brosnan and his second wife Keeley had this played as their first dance song at their wedding – you can file that under useless trivia!
The lyrics and really the whole package of the song, and Bruce’s voice are simple but perfect:
We said we’d walk together baby come what may
That come the twilight should we lose our way
If as we’re walking a hand should slip free
I’ll wait for you
And should I fall behind
Wait for me
We swore we’d travel darlin’ side by side
We’d help each other stay in stride
But each lover’s steps fall so differently
But I’ll wait for you
And if I should fall behind
Wait for meNow everyone dreams of a love lasting and true
But you and I know what this world can do
So let’s make our steps clear that the other may see
And I’ll wait for you
If I should fall behind
Wait for me
Now there’s a beautiful river in the valley ahead
There ‘neath the oak’s bough soon we will be wed
Should we lose each other in the shadow of the evening trees
I’ll wait for you
And should I fall behind
Wait for me
Darlin’ I’ll wait for you
Should I fall behind
Wait for me
Back in January 2007 I was scared and worried about the diagnosis I had just received. I was mourning mine and Bryan’s future life together and at times I wondered if there would be a future life together.
If as we’re walking a hand should slip free I’ll wait for you And should I fall behind Wait for me
My hand did slip free for a little while that year but I always knew in my heart that Bryan would wait for me and not leave me behind and something in that song, in the way it is sung, in the lyrics, in the meaning, really spoke to me during my early days living with cancer.
This has been in my music collection for so long now. It pops up in almost every playlist I have. I adore Stevie Nicks and this is the song of all songs by her.
This song speaks to me in it’s lyrics and the way she talks about fear of changing because she has built her life around this person. Time makes you bolder, children get older and back then all I wanted was to grow old with the ones I love.
The lyrics are wonderful.
I took my love, I took it down
Climbed a mountain and I turned around
And I saw my reflection in the snow covered hills
‘Til the landslide brought it down
Oh, mirror in the sky
What is love?
Can the child within my heart rise above?
Can I sail through the changin’ ocean tides?
Can I handle the seasons of my life?
Well, I’ve been afraid of changin’
‘Cause I’ve built my life around you
But time makes you bolder
Even children get older
And I’m getting older, too
Well, I’ve been afraid of changin’
‘Cause I’ve built my life around you
But time makes you bolder
Even children get older
And I’m getting older, too
Oh, I’m getting older, too
Listen to the song here. This is a gorgeous version from 2004 and she dedicates it to Lindsey Buckingham 🙂
7. Leader of the Band – Dan Fogelberg
Daniel Grayling “Dan” Fogelberg was an American musician, songwriter, composer, and multi-instrumentalist whose music was inspired by sources as diverse as folk, pop, rock, classical, jazz, and bluegrass. He is best known for his early 1980s hits, including “Longer” (1980), “Leader of the Band” (1981), and “Same Old Lang Syne” (1981).
I loved all his music. I discovered him when Longer was first played and followed him after that. I have a lot of his music on CD and loaded it all onto my iPod so I always had it at my fingertips. It’s mellow and chilled. It really used to relax me mid chemo and on the nights when I was so exhausted I could’t sleep in the hospital, his songs would be with me.
I had no idea that as I was lying in my hospital bed in Dublin, that he was in the final stages of his battle against prostrate cancer. Dan was diagnosed in May 2004, Fogelberg with advanced prostate cancer. After undergoing therapy, he achieved a partial remission. On August 13, 2005, his 54th birthday, he announced the success of his cancer treatments. He said that he had no immediate plans to return to making music but was keeping his options open. However, his cancer changed that and put a stop to him ever making any more music. Dan died on 16 December 2007, at the age of 56, just as I was looking forward to spending my first Christmas post-treatment at home with the family.
Leader of the Band means different things to different people. It reminds me of my gran – the leader of the band; it reminds me of the turmoil between parent and child and the sometimes wasted years because of that; and it reminds me of Dan and how cancer does not discriminate – it takes the talented, those who can sing and those who can’t hold a note.
My kids know all of my music as I am always playing these songs in the car when we are on long and short journeys. I used to look at the kids and think of this song and the words ‘The leader of the band is tired and his eyes are growing old, But his blood runs through my instrument and his song is in my soul……’ As I listened to the words I hoped that my kids would continue to grow in their love of music and culture and that I would be lucky enough to be around to share those experiences with them.
Here are the full lyrics and you can listen to the song here
An only child alone and wild, a cabinet maker’s son
His hands were meant for different work
And his heart was known to none
He left his home and went his lone and solitary way
And he gave to me a gift I know I never can repay
A quiet man of music denied a simpler fate
He tried to be a soldier once, but his music wouldn’t wait
He earned his love through discipline, a thundering velvet hand
His gentle means of sculpting souls took me years to understand
The leader of the band is tired and his eyes are growing old
But his blood runs through my instrument and his song is in my soul
My life has been a poor attempt to imitate the man
I’m just a living legacy to the leader of the band
My brother’s lives were different for they heard another call
One went to Chicago and the other to St Paul
And I’m in Colorado when I’m not in some hotel
Living out this life I’ve chose and come to know so well
I thank you for the music and your stories of the road
I thank you for the freedom when it came my time to go
I thank you for the kindness and the times when you got tough
And papa, I don’t think I said I love you near enough
The leader of the band is tired and his eyes are growing old
But his blood runs through my instrument and his song is in my soul
My life has been a poor attempt to imitate the man
I’m just a living legacy to the leader of the band
I am a living legacy to the leader of the band
8. Love Me – Colin Rae
This was our wedding song for our fist dance and I had forgotten about it for years until I heard it played on RTE Radio One in 2007. Colin Rae is the artist. He didn’t play at our wedding but a local band from Belturbet did and it was one of their prime numbers that they played so we thought we would keep it simple and let them play it for our first dance.
It was only in 2007 when I heard the words again, that I realised how sad a song it is. The lyrics are about dying and death but also love: ‘If you get there before I do, don’t give up on me ……’
I cried when I listened to the lyrics in 2007 and then I thought WHAT WERE YOU THINKING SUGGESTING THAT SONG FOR A FIRST DANCE AT A WEDDING?
Have a read of the lyrics below and then play the song. It’s a little bit country
I read a note my grandma wrote back in nineteen twenty-three.
Grandpa kept it in his coat, and he showed it once to me. He said,
“Boy, you might not understand, but a long, long time ago,
Grandma’s daddy didn’t like me none, but I loved your Grandma so.”We had this crazy plan to meet and run away together.
Get married in the first town we came to, and live forever.
But nailed to the tree where we were supposed to meet, instead
I found this letter, and this is what it said:If you get there before I do, don’t give up on me.
I’ll meet you when my chores are through; I don’t know how long I’ll be. But I’m not gonna let you down, darling wait and see.
And between now and then, till I see you again,
I’ll be loving you. Love, me.
I read those words just hours before my Grandma passed away,
In the doorway of a church where me and Grandpa stopped to pray.
I know I’d never seen him cry in all my fifteen years;
But as he said these words to her, his eyes filled up with tears.
If you get there before I do, don’t give up on me.
I’ll meet you when my chores are through;
I don’t know how long I’ll be.
But I’m not gonna let you down, darling wait and see.
And between now and then, till I see you again,
I’ll be loving you. Love, me.
Between now and then, till I see you again,
I’ll be loving you. Love, me.
Yep, that wedding song will forever be filed under ‘What were you thinking?’
9. You Raise Me Up/Crazy Love – Brian Kennedy
Brian Kennedy is one of my favourites and I was really soothed by his voice and his beautiful songs while I was feeling low in hospital during my stem cell transplant. His voice is unique and I can never listen to another version of You Raise Me Up without comparing it and finding it falls short of his version.
Some of his songs keeping me company and keeping me going were You Raise Me Up, Christopher Street, Crazy Love, Captured, Life Love and Happiness.
His song Crazy Love will always remind me of my darling daughter Emma. She was nine when I was diagnosed and she was so brave. I spent my time in hospital wondering and worrying about her. She texted me and called me and gave me so much love down the phone line. I knew she was lonely and missing me – I used to ache to be with her too. I know that Crazy Love is a traditional love song but it just has so much in it that describes the way I felt being away from Emma. There’s a crazy, brilliant and wonderful love between a mother and a daughter that I was and still am lucky enough to have with Emma. These are the lyrics:
I can hear her heart beat from a thousand miles
And the heavens open every time she smiles
And when I come to her that’s where I belong
Yet I’m running to her like a river’s song
She give me love, love, love, love, crazy love
She give me love, love, love, love, crazy love
She’s got a fine sense of humor when I’m feeling low down
And when I come to her when the sun goes down
Take away my trouble, take away my grief
Take away my heartache, in the night like a thief
Yes I need her in the daytime
Yes I need her in the night
Yes I want to throw my arms around her
Kiss her hug her kiss her hug her tight
And when I’m returning from so far away
She gives me some sweet lovin’ brighten up my day
Yes it makes me righteous, yes it makes me feel whole
Yes it makes me mellow down in to my soul
Of course we were blessed in 2008 to have Brian Kennedy play a private concert in our house thanks to the Mooney Show on RTE Radio One. He sang Crazy Love and You Raise Me Up. It was a once in a lifetime experience. It was also a link I will always have to Brian. I have been lucky enough to be at many more of his gigs since I recovered and I even sang a duet with him her in my living room and on stage in a theatre in Newbridge. This is Brian singing You Raise Me Up for me in my living room.
I was on national radio a few times as a result of winning the competition and someone heard me in Co Mayo and took the time to write to me. A week after Brian Kennedy played in our living room in June 2008 I got a letter in the mail. It was a hand-written card inside a silver envelope with a lovely set of music. When I looked closer I saw it was the sheet music for You Raise Me Up and someone had written the lyrics on the front by hand. I opened the card and it was from Brendan Graham the composer of the song. He wrote me this amazing card and gave me a signed copy of the sheet music to his song. That was quite something to receive and I will always treasure it. People are so kind in the face of illness and adversity.
Adversity and illness can happen to any of us at any time. I was devastated to learn that Brian Kennedy was diagnosed with cancer back in 2016. Thankfully he is almost through it and the prognosis is good for him. We need artists and musicians like him to get us through tough days so I hope he has a long and music filled life ahead of him.
Brian Kennedy in the Drumm sessions
10. Umbrella – Rhianna
I am not a fan of Rhianna. Her songs are ones I find myself singing along to as they tend to get so much airplay, but I do not own any of her music and I am not sure I would be tempted to buy any. But she is on my list because back in the Summer of 2007 the song getting all the airplay was UMBRELLA. Each time the door opened to the nurses’ station I would hear the bars of that song coming from somewhere. If I turned on the radio, it was there. I was in isolation in a small single room, unable to have the door or the window open. It was July and half the country was on holidays and I was stuck inside a hospital room. It rained every day of July that year and I was thankful that it did because I could not have managed it in there if there were blue skies and sunshine outside. On any other list of songs and music I was compiling this would not appear. It’s here because it was everywhere during the Summer of 2007. I’m not even going to bother posting a link to it because you know it off by heart and we are all fed up of listening to it.
So they were the songs I was finding comfort in and one I was being hugely irritated by. These songs will always remind me of key moments in my life (not the Rhianna one) and the key moments are the ones you recall again and again when your life flashes before you after a diagnosis of cancer.
Still, here I am 10 more years of music later. Still downloading music, still finding new songs and still raking through my musical first loves. No matter what happens, the music will never die…..
If you have stage fright, it never goes away. But then I wonder: is the key to that magical performance because of the fear? Stevie Nicks
If you have read my blog post 10 things for 10 years, you will know that number 2 on my list is: Do 10 things out of my comfort zone (I will need help with suggestions).
The first suggestions has come in and reads as follows:
How would ten minutes of stand-up comedy sound to you in a public venue with bad cancer jokes possibly the subject material but not essential.
How would it sound? Terrifying and totally out of my comfort zone, but I am up for it.
That’s one suggestion made and the challenge accepted. If anyone has a venue or an event they need a novice stand-up comedian at, please let me know.
I need nine more suggestions of things to take me out of my comfort zone!
“May you live every day of your life.”
― Jonathan Swift
Today, 10 January 2017, I am officially living with cancer for 10 years. While the day of the diagnosis is not necessarily something to be celebrated, the fact that I have won through for so many years definitely is.
I have championed for 10 years. Back then I thought I had about 10 months to live and that I would succumb to the disease that year. That was something terrifying to live with as I had a two year old boy and a nine year old girl and they both needed me. Being told I had a rare cancer that was incurable almost consumed me that day ten years ago.
While I am a strong person and I am delighted to be celebrating the past 10 years of being given a second chance at life, Brenda 2.0, has not come without its challenges and daily reminders that I am living with a really challenging illness.
In 2007 I spent 10 weeks in hospital for treatment, for stem cell harvest, for the transplant, and then for the shingles!
In 2008 I was admitted for a serious infection that I could not manage without IV antibiotics.
In 2009, on the first day of our family holiday, I was rushed to hospital in an ambulance with a pulmonary embolism. That was definitely one of my nine lives used up.
In 2010, there was another infection that I had to be admitted to hospital to treat.
In 2011 there was a respiratory infection.
In 2014 There was an admission to hospital for a serious respiratory infection.
in 2015 there was appendicitis. It should have been a keyhold surgery but because of my compromised immune system, it was five hours on the operating table as the infection and bacteria really took hold.
In 2016 I was told I might have a brain tumour and or MS. That diagnosis was given by a doctor in a small hospital who was not used to my complicated medical file and who panicked!
The list goes on. In between all of these I was at the hospital every week, every two weeks, once a month and now I go every eight weeks to haematology and every six months to renal care.
Even though I am in remission, you are never really done with the medical appointments and the daily reminders that you have cancer.
But today is a good day, it might even be a great day! I really and truly am celebrating the fact that I am still here and the hope that me still being here might just give to the medical team looking after me and to those who are newly diagnosed with this cancer.
When I was first diagnosed, I was always delighted to meet other patients and when they told me they were living with Myeloma for 5 years, I would do the maths and add five onto the ages of my kids. It wasn’t enough time. Then I met someone who was living with Myeloma for 7 years and I did the maths and added the 7 to my kids’ ages. It still wasn’t enough time. Then I met someone who was 10 years living with Myeloma and I thought, that’s better but it’s still not enough time. I have since met people who are living with Myeloma for 15 years and I realise now that I have become one of those younger Myeloma patients who is now creating new statistics by still being here after 10 years.
I have been thinking about this milestone date and year for a while and wondering how I might celebrate it. I have come up with a list of #10thingsfor10years.
It’s a list of 10 things I want to do to mark the 10 years. It’s as far from a bucket list as it could be because I don’t believe in those. These are things I want to do to celebrate, to mark 10 years of kicking cancer’s butt and to raise awareness of the disease (which is still rare) and also to show people that there is a lot of life to be lived after a cancer diagnosis. I am hoping I can count on your help with some of the things on my list. Here goes:
I want to perform at least 10 random act of kindness for 10 cancer patients and/or their family and maybe encourage you to do the same so we have 10 x 10 acts of kindness for cancer patients.
Do 10 things out of my comfort zone (I will need help with suggestions).
Do a mini SU2C (Stand Up to Cancer) event with at least 10 acts taking part and all donations going towards cancer research and/or helping Myeloma patients.
Postcards of thanksgiving and hope – send 100 postcards over ten weeks to say thanks to people who were there for me when I was ill.
Do 10 acts of faith – Novenas, Pilgrimage, Walks etc.
Have a thanksgiving event for friends and family in July to mark 10 years of my transplant.
Do at least 10 random acts of kindness for the doctors, nurses and staff looking after cancer patients. These are the ones at the coalface, the life-savers and we all know the conditions they are working in.
Raise at least 10 x 100 euro for cancer research.
Do 10 interviews in the media to share the good news that there is life after cancer and to raise the profile of Myeloma. It was mentioned on Grey’s Anatomy the other evening -it would be great to have that level of recognition and awareness of the disease here in Ireland.
Do 10 special things to celebrate with my kids and hubby.
If you can help me with suggestions please do. If you can help me practically with any of the above, I would be most grateful. All of the above will be subject at all times to how my health is but I hope that I can get through all of it.
Email me anirishgirlinterrupted@gmail.com if you can help with anything or want to make a suggestion.
If I can achieve even one or two of the #10thingsfor10years then I will be more than happy.
For today, I am simply glad to be here on earth and looking forward to taking the next 3,650 days, slowly, savouring each one, a day at a time!
“Without music, life would be a mistake.”
― Friedrich Nietzsche, Twilight of the Idols
A year ago I finally got my act together and did something I had been wanting to do for a long time – I joined a choir. The In Caelo choir is based in Saint Conleth’s Parish, Newbridge, Co Kildare and we sing every second Sunday at Mass.
When I joined I was so nervous as I hadn’t sung in any formal way for years and had not been in a choir since I was in school.
Being in the choir has been one of the best experiences. It has been good for the heart, my breathing and really good for the soul and for headspace. We rehearse every other Tuesday evening in the church and I always coming away feeling great.
We have had an exceptionally great year as a choir. We sang for the President and his wife Sabina on Saint Patrick’s Day; we recorded some pieces in Irish for a charity CD; we sang at a hospice remembrance service; we performed as part of JuneFest and took part in a couple of carol services before Christmas, including the Community Carol Service in Newbridge. It was wonderful to be one of the choirs that performed and contributed to the sum of 2,830 euro being raised for charity. We sang in Saint Mary’s Pro Cathedral three times during the year.
Looking ahead to 2017, we have the great honour of being the first choir to perform a brand new Mass setting by Padraig Meredith and we have been asked to perform in Knock Basilica.
So full steam ahead for this soprano.
If you have ever even toyed with the idea of being in a choir, just do it…… it’s a New Year’s Resolution you will have no trouble keeping.
No one’s life is ordinary. We’re all the heroes and heroines, with fate or flaws to bear. – Maeve Binchy
Nothing is ever normal or ordinary again after a diagnosis of cancer. While I went back to life and back to work, nothing has ever been quite as normal or ordinary as it was BC (before cancer).
You could say that being normal or ordinary is boring. And they are. But there are days when I would give everything I have just to be normally and ordinarily healthy.
Because of what cancer and then the treatment does to the immune system, it is never the same again. A common cold is never that common with me. A minor infection is never just that minor with me. Something more than a cold or an infection is so much bigger and more serious with me.
I have lost count of the times I have had to be admitted to hospital for ‘minor infections’. I have lost count of the times I drove myself in for a check-up, only to find myself admitted to hospital and having to go through all sorts of hoops and loops to get kids collected and the car taken home.
Normal is boring and I have had to come to terms with the fact that I will never have a normal response to any health issue again.
I can’t have anything done without checking with specialists first. I can’t go to the dentist without antibiotics cover. I can’t have a normal appendix operation like everyone else because the infection spread quickly and a one hour surgery became a five hour surgery.
I can’t have any part of me looked after in isolation – the team must know everything.
So that’s no big deal really! It’s not. But what is a big deal for me is worrying that I will go into hospital for a minor procedure, a minor infection, and just not come out again. It has happened to Myeloma patients that I knew…… that I knew….. past-tense. They are past-tense as they did not make it.
It’s hard to deal with this hanging over me. I have to be careful. I have to report in and consult as soon as something feels strange. I have been admitted to hospital with shingles because they were worried about the adverse effects on my organs. I have been admitted to hospital for a wheeze because they were afraid it was becoming pneumonia.
I have been admitted to hospital on day one of a family holiday and the plans have had to be cancelled. I have missed poetry readings by my talented daughter because I have been in hospital. I have missed school stuff with both kids because I have been fine one minute and in hospital the next. We can’t plan long term anymore as we never know how I will be. I hate that I have been ‘sick’ for 10 years out of my son’s 12 years. I hate that I have been ‘sick’ for 10 years out of my daughter’s 19 years. It’s tough on them. I hate saying no to things because I am in pain, or lacking energy.
When I get sick, I go from fine to really sick in a matter of hours. I hate the worry I see in their eyes when this happens.
Most days I get on with it and deal with it. Some days I don’t have the energy to just get on with it and to deal with something else. But I always do.
I know that these bumps in the road are a small price to pay for being mostly well and I am grateful for that.
But sometimes I would just love a streak of being normal and being well that lasts longer than a few months. I would love to plan a family holiday that is two year’s away. I would love to be able to be all the things that healthy Mums are. I would love to be fit enough to do all the things that healthy Mums can do.
Health is a crown worn by those who are well and seen only by those who are sick. I would love my crown back. I would even settle for a tiara of health at this stage.
September is Blood Cancer Awareness Month. Personally, I am all too aware of blood cancer and the impact it can have on a life, on a family.
However, there is a campaign with a hashtag to #MakeBloodCancerVisible. We are being asked to share our stories of living with blood cancer. Myeloma, my cancer, is classed as a blood cancer. About 222 people are diagnosed with it in Ireland each year. It does not feature in the most common cancers affecting men and women here in Ireland. It is classed as a rare cancer. The difficult with being diagnosed with a rare cancer is that there is very little out there on the cancer, very little other experiences to draw on, very few if any celebrities involved with the cancer and no fundraising on a grand scale.
My story is available here for anyone to read. I hope it has helped someone newly diagnosed with this rare cancer.
You can also read some stories about people living with Myeloma and other forms of blood cancer here.
The Irish Cancer Society is a great source of information. You can check them out on www.cancer.ie.
On September 27, Blood Cancer Awareness Month culminates with the first European Blood Cancer Policy Summit organized by Janssen and the European Centre for International Political Economy (ECIPE). A distinct lack of awareness means that blood cancer is not prioritised at the EU level or by many national governments. This is resulting in severe gaps in healthcare delivery, such as delayed diagnosis or misdiagnosis, inadequate access to new, innovative treatments and proper care for the people who need it the most. Working together with ECIPE, Janssen hopes to start shaping that debate.
I for one welcome this news. I would hate to think that resources are not being put into research into a cure for Myeloma, because of a lack of awareness about the disease. Those of us living with Myeloma deserve attention, resources, and even a cure.
Please consider sharing my blog post and spreading the word about my rare cancer.
Oh and if you are eligible to give blood or any type of blood products, then please do.
I have a certain routine for my hospital haematology visits. They take place every eight weeks so it is a routine I have honed over the past few years.
I leave at the same time, head the same route up the N7 and cut off after City West. I park on level one of the hospital car park. I check in with the lovely receptionist and hand in my blood forms. My blood samples get taken and sent to the lab and then I sit and wait for an hour or so before heading upstairs to register with haematology rapid access clinic.
While I wait I buy a copy of The Irish Times, an orange juice and a banana and walnut muffin. I do the crosswords while I wait. Once in the clinic, I see the consultant, have the chat, bring up any issues, ask advice and nine times out of ten I get the all clear and am sent home. I take a detour to the hospital chapel on the way out to say a prayer of thanks.
The routine keeps my nerves at bay. Yes, even after doing this for nine years, I am still nervous at each appointment. I am always hoping that the all clears will continue and that I won’t be kept in because of an infection or because of blood ox level (which happened once). I am always afraid that any one of these check-ups will be the one at which I receive the news that the cancer has come back.
The routine is important. This morning my routine is completely out of sync. I left home slightly later than I usually would as I am on holidays and did not hear the alarm on the first ring. There was no traffic at all so I flew up with no queues. I had to park on the second level as I just missed the last space on level one. A brand new person took my bloods and there was no sign of the lovely receptionist. Then I got to the cafe and there were no banana and walnut muffins. I had to settle for a blueberry one. I did the crossword and finished my refreshments and went up to the haematology day ward. It wasn’t where I left it eight week’s ago! I had to go searching for it. Someone had moved it to a completely different floor.
Needless to say this development has done nothing to calm my nerves. My nerve noises and voices seem louder today.
Keep your fingers crossed for me and if you do the prayers thing, you might include me.
I am hoping for another all clear and for a return of my hospital routine to just the way I like it.
An Irish Girl Interrupted 