“Today is life–the only life you are sure of. Make the most of today. Get interested in something. Shake yourself awake. Develop a hobby. Let the winds of enthusiasm sweep through you. Live today with gusto.” – Dale Carnegie
On this day 12 year’s ago [9 July 2007] I received an autologous stem cell transplant in the hope that it would give me a new lease of life after being diagnosed in January of the same year with an incurable cancer called Multiple Myeloma.
The Science Bit
Myeloma is a type of cancer that develops from cells in the bone marrow called plasma cells. Bone marrow is the spongy tissue found inside the inner part of some of our large bones. The bone marrow produces different types of blood cells. Myeloma can develop wherever there are plasma cells hence the name Multiple Myeloma.
Each year in Ireland approximately 250 people are diagnosed with multiple myeloma and 170 succumb to their disease.
An autologous stem cell transplant uses healthy blood stem cells from your own body to replace your diseased or damaged bone marrow. An autologous stem cell transplant is also called an autologous bone marrow transplant.
Using cells from your own body during your stem cell transplant offers some advantages over stem cells from a donor. For example, you won’t need to worry about incompatibility between the donor’s cells and your own cells if you have an autologous stem cell transplant.
An autologous stem cell transplant might be an option if your body is producing enough healthy bone marrow cells. Those cells can be collected, frozen and stored for later use.
Autologous stem cell transplants are typically used in people who need to undergo high doses of chemotherapy and radiation to cure their diseases. These treatments are likely to damage the bone marrow. An autologous stem cell transplant helps to replace the damaged bone marrow.
The Reality
That’s the science bit in relation to the stem cell part of the treatment which also has an amount of advance prep and treatment that in my case took almost six months.
The process of the transplant meant being in isolation in a hospital room away from family and friends and the outside world for a month.
Despite reading and researching all the treatments and side effects I was still unprepared for the sheer awfulness of the treatment but I had no choice if I wanted to live.
At the time of diagnosis we asked what would happen to me if I didn’t have the treatment and they told us that I would succumb to the disease quite quickly. I could not allow that to happen as had so much life left to live and I was not going to risk having to say goodbye to my kids Emma (who was nine at the time) and Cathal (who was only two).
So I had the treatment – it’s well documented else where on this blog so I have no intention of revisiting it. But, it was horrendous and there were times during it that I felt too weak to fight.
A lasting memory from the treatment was the sheer will power it took every day to do the most simple of things like getting up off the bed, walking to the shower and washing myself. There were offers of help when I was literally too weak to stand but I used to sit on the bed sometimes for over a hour doing the actions in my head and waiting for my body to catch up with what I was trying to do – walk to the shower.
I had every other side effect going. I lost my voice at one point. I dropped four stone in weight during the month of treatment and went down by five dress sizes. I was unrecognisable coming home after more than a month in hospital in the early days of August 2007.
But the transplant worked and so far I have received 12 years of complete REMISSION. I am really one of the lucky ones as I know many people who were with me on the myeloma journey that have succumbed along the way.
The past 12 years have been full of good times and a few blips along the way. As a Myeloma survivor, I have a somewhat compromised immune system and I don’t react the same way as someone with a health immune system does to things like a cold or the flu. I was plagued in the early years post-transplant with infections that took hold and that I had to be hospitalised for. I also had a Pulmonary Embolism in 2009 and was pretty lucky to survive that.
If I was a cat I reckon I would have used up more than half of my nine lives.
Whilst I am in remission, I have never been let totally off the hook by my doctors. I used to see them fortnightly, then monthly, then bi-monthly, and now I see them for a full check up every three months. Some people might see that as a chore but I see it as a security blanket. It does mean butterflies every three months as I await the results, but those butterflies have thus far always evaporated into little flutters of relief and joy.
Cancer changes everything
You don’t often get to read a huge amount of the detail of a cancer survivor’s story – you get the headlines without getting a real insight into the day to day practicalities. The devil is literally in the detail.
As someone diagnosed with cancer you temporarily have to stop planning everything from family holidays to career goals to the most routine of things – it all comes to a stop and you gradually have to build your life up again around the cancer.
Initially it’s around the treatment where you are managing sick leave, sick certs, drugs payment schemes, health insurance and what it does and doesn’t cover, hospital appointments. Then there’s the myriad of meds that are part of the treatment as well as learning the combination and sequence of each of the drugs, self-injecting when red cells are low etc etc
As a Mother with Myeloma you still have to also keep the home show on the road and ensure that all the normal day to day family things get done – books, uniforms and lunches. It’s important to keep family life as routine as possible.
You can be facing into the most serious of treatments of a given day and find yourself running around the house in the early morning looking for a lost science book or PE gear that has gone missing. It’s a strange juxtaposition of the normal versus the most abnormal life altering diagnosis.
I also had to temporarily give up work for a minimum of six months. The transplant hit me very hard and my return was delayed. Then when the plans were in place to go back before Christmas, I got shingles and had to be readmitted to hospital. That meant more re-ordering and readjusting.
I thought that having Myeloma would mean that I would have have to give up on my job ambitions and that I would always be looked at as the person with the serious cancer.
Career dreams. Life dreams. Family dreams. Relationship and marriage dreams. Holiday dreams were all put on hold while we absorbed the seriousness of the diagnosis and tried to get answers about how long I might have to live.
There is no exact answer to that question about how long I might have to live when it comes to Myeloma as it is such an ‘individual’ disease and each person presents a little differently than the person before and responds in different time lengths to a transplant.
But here I am 12 years a survivor.
Career dreams. Life dreams. Family dreams. Holiday dreams were all put on hold while we absorbed the seriousness of the diagnosis and tried to get answers about how long I might have to live.
I am go grateful that I did not give up on myself or any of my dreams back in 2007 because each and almost everyone of them has been gradually reignited during my remission.
Memories, Milestones and Dreams
It’s been 12 years of amazing family milestones from primary school graduations to secondary school and into college. My daughter has graduated from college and I got to be there for her! I am getting to watch my children grow up. What an amazing thing to be able to say.
I am also blessed in my marriage with my husband Bryan who has stood by me through the sick days and has stood even closer on the dreadful days during the past 12 years. The dreams we had to put on hold are coming back to life too and we are genuinely looking towards retirement and more adventures together.
I have also fulfilled so many other dreams from travelling to see more of the world and more of this beautiful country I live in, from taking up new hobbies and being able to get back to walking and swimming again. I have joined a choir and sung for the President twice. I have had a piece of art in a 1916 exhibition that was hosted in the Botanic gardens. I have climbed a mountain, joined the scouts, taken up knitting, painting and gardening. I have experienced a multitude of new things and loved every moment of it. I have made lots of mischief too with the kids.
I had a concert with Brian Kennedy in our living room. I wrote a song and almost had a Christmas number one. I helped develop a Pope emoji, met Pope Francis and made him laugh!
I have also fulfilled many career dreams. While I am happily in the same job I was in when I was diagnosed I have also gotten to achieve so many of my career dreams from representing the Church at various Irish and international events; from being a published author with two books coming out this year relating to my work in the Church and digital media. I have visited the Somme as part of a centenary pilgrimage and made my first mini documentary. I also became a radio presenter/broadcaster in my forties and had two one hour weekly radio shows that I was part of for seven years. But the biggest event in my career to date came about last year when I got to be the Media and Communications Manager for the World Meeting of Families 2018 and the Papal Visit to Ireland. Back in 2007 immediately after diagnosis, I never thought I would be adding that to my CV.
Advances in Myeloma treatment
For those with Myeloma it’s important to know that 12 years is a long time in medicine and the side effects that I went through are probably better able to be managed now. There are also all sorts of new treatments and drugs available for those of us with Myeloma and in many ways Ireland is up there on the world stage in terms of holding its own with advancements in treatment.
There is life after cancer
As I celebrate the 12th anniversary of my transplant and my 12th year of remission, I want to impress upon those with cancer and their loved ones that there is life after cancer, there are great advances in research and treatment and if you want it there is a career for you after cancer too.
But most importantly after a cancer diagnosis there is always hope …… and a time when you can dream your dreams into reality once again.
Remember when video content was supposed to kill the written word and create a more visual web? Remember when video was supposed to have killed the radio star? Once again it seems the ‘experts’ may have written audio off prematurely.
In our digital age where time is the new currency, there is an increasing pressure to take advantage of every second. As a result, it’s the rise of audio and the evolution of podcasts that is now taking centre stage.
Many people are also turning to audio assistants in their daily lives like Siri, Amazon Alexa, Microsoft Cortana, and Google, because it is has become easier to search for information using our voice. Mainstream users are already getting comfortable with speaking to their devices rather than tapping things out on a keyboard or a phone.
It was back in 2005 that Apple first added podcasts to iTunes back in 2005 but we are only just beginning to understand the value of the human voice. Engaging with an audience on the other side of the world by beaming your voice into their ears is now possible for anyone via a podcast. But one of the reasons why podcasts have suddenly become so popular is that they are almost effortless on the part of the consumer and they can be engaged with while you are doing something else like exercising, commuting or walking the dog!
Is audio replacing music? Not quite. We all still love the idea of being able to access any song or any album at the touch of a button but Spotify continues to add more podcasts to their platform.
Podcasts are also finally bursting out of the limitations of iTunes and available on other platforms such as Amazon Echo and Spotify.
The Vatican is getting in on the audio act too with a new APP to help listeners to tune into the Pope now available for mobile devices in five languages.
Created by the Vatican’s Dicastery for Communication, the app “Vatican Audio” can be downloaded free from the App Store and from Google Play. One can also scan the QR code above to open the link to the download page of “Vatican Audio”. After installing, all you need to do is to choose your language and simply listen.
Pope Francis, who generally speaks in Italian, can be heard live in Spanish, English, French, German and Portuguese. When he speaks in his native Spanish, the app also provides the audio in Italian.
Pilgrims and visitors attending papal events in Saint Peter’s Square can also follow the Pope in the five languages.
This service is in addition to the live broadcasts in different languages already available online and on radio.
Search for “Vatican Audio” in the App Store and Google Play as a free download and tune in to Pope Francis.
This is a wonderful development that will now bring Pope Francis even more followers on the various digital platforms that he is present on.
I read a quote online recently where someone described the way we consume information now, saying that we are all raconteurs now that share our unique stories around virtual campfires. Video may attempt to kill the radio or audio star in the future and platforms will continuously change, but how we consume content remains largely the same.
Official hashtags for WMOF2018 and a new Pope emoji
Many will receive this September issue of Intercom Magazine in August just as we are about to begin the World Meeting of Families 2018. The official hashtags for linking in with the visit are #popeinireland and #papaineirinn
There will also be a Pope emoji which will activate during the visit of Pope Francis when these official hashtags are used on Twitter.
For more on the digital output of WMOF2018 follow us on Twitter and Instagram as @wmof2018 and find us on Facebook as World Meeting of Families 2018
This article is courtesy of Intercom Magazine, in which I write the monthly Get Connected column. This article was first published in the September 2018 issue of the magazine.
“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!
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.
This is an old post from a previous blog on a different platform which I was reminded about today, so I thought I would share it on here. It’s from March 2014:
I don’t know if you ever check the OTHERS option on your Facebook messages. I don’t check it that often but did so today at lunchtime today and I found a message there from a girl I have not been in touch with for 35 years.
Her name is Maria Cosgrove and she is from Ballybay – a small town in Co Monaghan. I used to live there with my family until we moved away in 1978 after my dad, the local Garda, was transferred, as was the custom in those days.
We had great friends in Ballybay. I started primary school there. We had a gang called The Hall Street Gang. We had adventures like those kids in The Goonies, or the Famous Five or Secret Seven had. The Hall Street Gang was the gang of kids who lived in a cluster along Hall Street. We met in the lanes and the fields and sometimes in the Garda shed.
The Drumms, Maguires, McMahons and the McItaveys were the main members of the Hall Street Gang (I hope I am remembering the names correctly).
A photo taken sometime in the mid seventies, captures us in colour, outside the Garda Station which was really in our front garden, underneath the three big Cherry Blossom trees that adorned the grass verge on the way up to the door of the station.
There was no email, text, Facebook or Twitter in those days and the house we moved to did not have a phone. I recall a lot of tears the day we left as we hugged and promised to keep in touch and I do remember a few visits back for different things. Some of our friends from Ballybay also came to visit us too in our new home.
But time passed and we grew up in a brand new town and made new friends. We sadly lost contact with our friends from Ballybay.
But I have never forgotten Ballybay and the gang of friends we had.
I remember happy times in the house we had behind the Garda station.
I remember being outdoors in all weather, getting lost in the fields on purpose, collecting blackberries and selling them to local shops – sometimes the money went to the nuns in the Convent of Mercy and other times it went to buy sweets for the gang.
I remember plays we used to stage in the garden and in the Garda shed. We would charge people 10p to come and watch a variety show which was never very good, but which people (well other children) came to watch.
I remember Community Games in the big park. Relays, hurdles and my breath being almost taken away with the exertion.
I remember the teachers we had and moving from the small school to the brand new purpose-built school with the new carpets, the new desks and chairs that were proper chairs and not old benches with ink wells.
I remember Sister Philomena, who was small and gentle but very capable of keeping things moving. I remember a few years ago learning of her murder and trying to understand how something so awful could happen to someone so gentle.
I remember swinging and balancing on the bars and railings and my sister breaking her arm.
I remember being run over by my Dad’s car in the school yard and all the visitors to the house who I bet could scarcely believe I had survived – what four year old survives being knocked down, trapped under a car and driven around a tough tarmac school yard ? I remember our postman and Miss Salmon chasing the car and shouting STOP before it pulled out onto the main road.
I remember swinging on the gate and getting that little scar under my lip when the gate slammed shut. I remember walking the walls on the way up home.
I remember the embankment at the back of the corner shop where we disturbed a wasps nest and where my sister was stung several times. I remember the smell of vinegar on the stings.
I was part of an Irish dancing troupe in Ballybay. The costume was cream with purple Celtic designs. For the life of me I can’t remember the name of the Irish dancing school. I remember my dancing partners Damian and Catriona Carragher. We were a great group for the three-hand reel.
I do remember the sweet shop at the top of Hall Street, conveniently located on our route to school. The shopkeeper Mrs Daly always seemed old to me in those days. She had a counter with a glass front filled with trays of sweets. Depending on how much (or little in my case) money you had, you asked for the corresponding tray and knew that everything on it could be bought for halfpenny, a penny, two pence or five pence. I am not sure if there was a ten pence tray. Katie Daly was her name and through my conversations and subsequent connection with a Facebook page called BALLYBAY AND ITS PEOPLE, I found out that she is alive and well and in her 90s. How I would love to sit down with her for a chat.
I have been hanging out on this Facebook page for the past few days and I shared this picture taken as I mentioned earlier, in our front lawn adjacent to the Garda Station.
The Hall Street Gang sometime in the 1970s
Since posting the picture I have chatted to three of the people in it. I have not spoken to them since we left Ballybay in 1978. 35 year’s later and it’s all come back to life through the power of social media. It’s been great.
I am looking forward to having more memories refreshed by these new old friends from Ballybay. So do check that OTHERS folder on Facebook and if you are ever in the area do give Ballybay a visit.
It seems it has always been the place where everybody knows your name!
“I am a rare species, not a stereotype.”
― Ivan E. Coyote
Today is Rare Disease Day. It is celebrated this year on 29 February.
Today I am thinking of all those fighting a rare disease and thankful for any and all supports available to those of us who are living with a rare disease.
In many cases when you are diagnosed with a rare disease you feel alone – you have never heard if it, your family has never heard of it, your friends and colleagues have never heard of it either. You spend your time explaining what it is to people and are often exhausted while the person listening is bewildered by all the information.
Often you have no yard stick of knowledge or information against which to measure what you are experiencing. You learn as you go. You have to few options when it comes to trusted online sources and in many places the information is years out of date. I looked up a medical dictionary about my rare disease and it more or less told me I had less than a year to live! You have to be so careful about who and what you trust for information.
In addition to that, rare diseases are most often the poor relations when it comes to research and drug development. If so, few people are diagnosed with your rare disease, then shouldn’t we be putting the research into the area where we can help most people? I would hate to think that is the conversation that is happening about my disease but in many cases it can be.
Thankfully in the case of my rare disease – Myeloma – we have amazing international organisations like the International Myeloma Foundation which was founded by a patient and her twin sister. I would imagine they did it for the same reason I set up a dedicated Irish myeloma website – to connect, to tell the myeloma story, to raise awareness and to get to work! We are blessed to have the IMF, the Myeloma Beacon, Myeloma UK and The Irish Cancer Society who are leading the field in research, information, patient support, and development of new drugs.
So to all those battling a rare disease – Happy Rare Disease Day. Remember:
Talk about your rare disease.
Don’t every apologise for being the expert on your own disease.
“Hold fast to dreams,
For if dreams die
Life is a broken-winged bird,
That cannot fly.”
― Langston Hughes
Today is World Cancer Day. All across the world cancer organisations and people with cancer are doing their bit to raise the spirits of those with cancer and to also raise the stakes of those who have the power to change treatment, improve research and generally get us further along the road to a cure.
The Irish Cancer Society is using the hashtag #icanwecan to promote their work in the area of cancer research. They are asking all of us to remind the candidates as they canvass for the general election (taking place in Ireland on 26 February) to put funding for health and specifically for cancer research in their manifestos. This is all with a view to getting the funding to push us further down the road to a cure.
I listened to a radio interview today where the head of research in the Irish Cancer Society said that more and more people are living with rather than dying from cancer. He also said that many cancers are now seen as chronic illnesses to be managed and which we can live with. That is all good to hear.
But somewhere out there someone has the cure for cancer – someone has the cure for my cancer – Myeloma. I would dearly love them to find it in my lifetime. So please keep talking about cancer and treatment, please keep raising funds and please keep the pressure on our TDs and Ministers so as they support those who are working towards a cure.
Here’s my contribution for World Cancer Day. It’s a short video called ‘Hang in There’ which is aimed at those newly diagnosed and those still battling along with treatment.
“Do not judge my story by the chapter you walked in on” – Unknown
The 8th of December is a special day for me in many ways. It is the Feast of the Immaculate Conception of the Blessed Virgin Mary, so as a practising Catholic, it’s a big day. It’s a day off from work and a day to participate in the celebration of the Eucharist. Mary is quite a woman and someone to whom I have a strong devotion. I believe that she was with me during the trials of my transplant ……
Getting back to the 8th of December, and specifically to 8th December 2006. I was on a day off from work. I was feeling ok. I was sitting on the couch mid morning when my phone rang. It was Bishop Larry Forristal, the then Bishop of Ossory (Kilkenny). He was phoning to thank me for a memorial card I had sent on to him but then he said something which made me sit up a bit straighter: “Brenda, I’m worried about you”. Now that wasn’t the call I was expecting – not when someone like him should have been really busy with Feast of the Assumption of BVM Masses. But he had taken the time to call. He went on to tell me that he was worried because of what he saw in me the day before. He had been in Maynooth for the General Meeting of Bishops. At the time I was so taken aback, I did not have time to think ‘Jeepers he’s brave commenting on how I am looking!’. He moved on quickly before those thoughts came into a thought bubble over my head. “Brenda”, he said, “You are looking unwell, are you ok?” ‘I am’, I said. “Are you sure?”, came the reply. “You are important to us”, he said, “but you are even more important to your family. Are you really well?”
I told him I had a cold and a few other little doses. He assured me of his prayers and parted by asking me to look after myself. About an hour later I started vomiting and feeling really ill.
A part of me was wondering if he had jinxed me but I knew that wasn’t the case.
I realise now that he had seen something in me that I could not see in myself. He had seen the beginning of the effects of the cancer taking hold.
Any of you who have been following this blog know the story from here. I spent the rest of that weekend feeling ill and vomiting and eventually gave in and went to the doctor who gave me some anti-sickness meds and some stomach tablets to ease my discomfort. What no one knew at the time was the reason I was being sick. I was in kidney failure and I was poisoning myself from the inside because my kidneys were not doing their job anymore.
I had an entirely miserable month of December (2006). It’s strange to be able to pin-point the exact moment and date that I first became ill. The 8th of December 2006 was the day and about 11am in the morning was the time.
I find myself sitting in Starbucks in Dublin on the 8th December 2015 – nine years later. Yes NINE YEARS!
Living with an illness can become all about dates and anniversaries of good and bad news. I have been notching up the dates and the years associated with my illness and today I can notch up the first 9 associated with my illness. It is NINE years today since I first became ill. It feels good to type and to say NINE YEARS.
I am well at the moment. I do have one more hospital appointment this week which will hopefully be the last one this year. I am incredibly lucky to be here – no I don’t mean here in Starbucks. I mean HERE. I mean ALIVE. I mean WELL.
I was listening to an interview on the Tubridy Show yesterday morning with a woman who was recently diagnosed with cancer. The woman being interviewed is Emily Hourican. As I sat listening I had flash-backs to all of the emotions that she was describing and how she was feeling annoyed with herself for being presumptuous about life and other things. I know those feelings so well. She was talking about having to tell her kids about the cancer and hating the idea that they describe her as being ill. That’s tough.
Anyway, here is little old me notching up 9 year’s of living with a cancer that possibly should have and indeed could still kill me. We can’t ever say it’s gone for good because the reality is that it is lurking around the corner all the time.
But as I notch up the number nine in years of living with this I am grateful to have been given the chance to put so much life into these last nine years. I am grateful for all the memories made and the mischief managed in the past nine years. I am grateful to be feeling well as we approach Christmas, my most favourite time of the year. I am grateful to all those who love me and who have stood with me – especially my husband Bryan to whom I will be married for 20 years on 29 December next.
I have said this before and I will say it again:
We all take things in our lives for granted – time being one of them. We assume a path in life that includes growing old with the ones we love. As a result of my cancer diagnosis almost nine year’s ago, I knew that I would never take time for granted again. Because of my cancer diagnosis, time is the thing I find myself most grateful for.
An Irish Girl Interrupted 