“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.
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.
“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.
On this day 10 years ago my beloved grandmother died. She was a good age as they say and she passed away after a short but very challenging battle with Esophageal/Stomach cancer.
Her name was Mary Elizabeth Drumm (nee Egan). She used to joke that she was called by one of the Queen’s names. She was also known as Babs by some of her family as she was the youngest. When we visited relatives with her in Athlone she went from being our ‘Mammy Drumm’ to Babs.
I think I was the one who first called her Mammy Drumm. When I was just short of two my younger sister arrived into the world. My mum was 25 but she had three girls under the age of 4. That was more than a handful so I was sent off to live with my grandmother Mammy Drumm (My Dad’s mum) and my other gran came down to be with my Mum, the new baby and my older sister. After a couple of weeks with my ‘Mammy Drumm’ my Dad arrived to collect me. I am told that I didn’t want to get into the car, that I wanted to stay with my Mammy Drumm. I believe my gran also asked my Dad to leave me with her for a little longer.
We were her only grandchildren. As a young married woman my gran had a number of miscarriages and a stillbirth. She had also lost her beloved eldest son Paddy when he was four and when my Dad was just nine month’s old.
They lived in Gort in Co Galway at the time. Paddy was known all around the village as he was feisty and full of character. He would call to some of the houses and speak to the housekeepers and he would say ‘I will say thank you if you give me bread and jam’. They would always comply and he would always say thank you. Paddy was hit by a car/truck when he was outside playing. He was taken off to the hospital where they kept him in and where initially they refused to let my gran see him. She was having none of it and demanded to see him. Her husband Mick was in the army at the time and they were part of a very close-knit community in the army and in the village. They spent time with Paddy in the hospital over the days that followed. They had no car so they would get lifts and cycle 20 miles to be with him. Paddy had a broken leg and so it was covered in plaster. The medical team didn’t pay the attention they should have to the large cut which got infected and which eventually caused blood poisoning and the death of their beloved son Paddy. He was buried in the children’s graveyard in Gort and the people of the town never quite recovered from the tragedy. Neither did my grandparents.
I know that my gran held Paddy in her heart for her whole life and she spoke about him often. She lost her husband at a young age too. I sometimes wondered how she went on after all that tragedy.
But if you knew my gran you would know that she was quite simply THE most amazing woman. She was way ahead of her time in terms of thinking, fashion, opinion and all manner of things. She drew us to her like a magnet with her wit, kindness and her love. She would say that it was her purse which also drew us to her as she spoiled us – just enough, so as not to get into trouble with our parents.
She was my Godmother, my sponsor at Confirmation, the first person I told when I found out I was pregnant with Emma. She believed in tradition and legacy. She insisted on buying my wedding dress for me – I was her Godchild, her Grandchild and the first of her grand children to get married.
She used to say to me ‘When I am dead and gone, I can’t take it with me and you will look at that dress in years to come and remember me’. The dress is far down a long list of reasons I will remember her always.
She had a tremendous wit and a love of company and conversation. She was brilliant at games, cards and asking for a bargain. She would put on this air of being a poor old lady when she was in fact quite the opposite – and you would fool her and deceive her at your peril. She was firm with us when she needed to be but I will remember her as kind and funny and a hundred other ways, before I will remember her as a cross person.
She was teetotal but she loved tea. She was a pioneer but later on in her life she allowed herself a glass of bubbly at a wedding.
She was a woman of deep personal faith in God and she was always in the middle of a Novena when we went to stay with her. She would always have a candle lighting on the mantelpiece in the kitchen for some intention. I can’t begin to imagine how many candles she expended on our exams and on tests! She kept them lit!
She had five grandchildren and she loved each one of us. She never took sides. She had nieces and nephews too whom she loved like they were hers.
Bryan and I gave Mammy Drumm her first grandchild. When Emma was two weeks old I surprised my gran by driving from Newbridge to Longford so as she could meet her. She was besotted and so began another wonderful relationship between Mammy Drumm and her first great grandchild. She was blessed to get to see three more great grandchildren before she closed her eyes.
My gran was an Egan from Clonmacnoise where she grew up in a farming family. While she lived in the West of Ireland, in Dublin,Athlone and Longford, her heart was always in Clonmacnoise. She never missed the pattern there and we were regular pilgrims to Saint Ciaran there and grew to love that sacred place as much as she did. It’s in our blood.
Mammy Drumm was a regular visitor to us in Newbridge and Emma loved her. She spent time with Bryan and me when we were newly weds after a serious accident left her in traction for 7 weeks.
The last Summer she came to stay with us was the Summer of 2005. I knew she wasn’t well when I heard her being sick in the middle of the night. She brushed it off and said it was just an upset tummy. I accepted her explanation. She was devious at times and hid how bad she was feeling. Weeks later when she was back at home we realised it was something more serious. It all went downhill after that.
A few weeks before she died I was in work and I suddenly felt anxious about her and about the lack of a firm diagnosis. My brother was in Cavan with her and was trying to get answers about treatment. I left work and drove to Cavan and myself and my brother received the news that she was not going to get better. The doctors said she was not going to survive the cancer, that she would eventually succumb to it. I went back to see her on the ward and I was terrified of having to talk to her about death. She knew before I said anything. She had been afraid of cancer her whole life and when saying the word she would whisper it or spell it! As she lay in her hospital bed looking frail and pale she reached over and beckoned for me to lean in and she whispered to me ‘I am ready to go. I am not afraid’. I asked her if she wanted to see the Chaplain and she said she did. I had him paged and he spent time with her. When he came out, he looked at me and said she is happy and at peace. She is ready to go.
None of us who loved her were ready to let her go. She was the Matriarch, the head of the family, the glue that kept us all together. My mother deserves the credit for being a living angel to my gran when she was sick. She nursed her at home when she was in and out of hospital for the months before her final diagnosis. She sat with her at night and cleaned up the mess that this type of a disease brings. No one did more for my gran in her final weeks and days than my mum did.
My Mum, Dad and brother were with my gran when she died in the early hours of the morning of 10 May 2006. I wasn’t there and it is something I will always regret. I got the call just moments after she had passed. It was the saddest moment and there is a gap in our lives that nothing and no one can ever fill.
We knew what we had to do. I was asked by her to phone a priest friend of hers in Longford with the news. When I called him to tell him the news he said ‘I know what I have to do’. I am not quite sure what he meant but suddenly all sorts of things swung into action. We followed her wishes to the letter – She was waked near our house in a funeral home. She wanted a removal to the Church and a requiem Mass and she wanted to be buried beside her beloved husband in Longford.
We all had our part to play.
When we received her remains to the nursing home from the hospital, there was work to be done. She had the most wonderful silver grey hair and my Mum always set it for her. It would have been important for her to be well presented so my Mum and I worked on her. My Mum set her hair. I did her make up. I had never done anything like that before and I was shaking as I did it. I cried and cried until my tear ducts were dry – we all did – but we all played our part.
She had a beautiful wake with prayers and then we had family time with her until late into the night. Her removal and funeral Mass were beautiful. As we brought her remains into the church there was a ferocious rumble of thunder – she always hated thunder and it was as if she was having a last joke.
She would have loved the idea that two bishops officiated at her funeral Mass and burial in the cemetery in the Longford. Her old friend Bishop Colm O’Reilly was there waiting for us in the graveyard when we arrived as was her lifelong friend – the priest I had to call. It suddenly made sense.
We said goodbye to her at the graveyard in Longford. My brothers stayed to fill in the grave. We all played our part.
Ten years on she is still missed, still talked about, still loved.
I miss you Mammy Drumm. I hope the tea is good in heaven.
“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 