In the shadow of cancer

In the past two weeks I have learned about the deaths of two people I knew from Myeloma. These deaths hit me very hard because I too have Myeloma. Myeloma is a cancer of the plasma cells of the bone marrow for which there is currently no cure.

I was diagnosed in January 2007. I was 38 at the time. The majority of people who get myeloma are over the age of 65. I was one of a rare breed of people who get myeloma whilst under the age of 40 – only 2% of those who get myeloma are under 40.

At the time of my diagnosis they did not really talk to me about a definitive prognosis. With myeloma there are no guarantees. A lot depends on how I respond to treatment. There might be remission. The remission might be a few months or a few years. There will definitely be a relapse, maybe even a few relapses.

Myeloma is not curable but it is treatable. But people still die from it or from complications associated with it and I am sure that I will die from it too – one day.

The news of these recent deaths have me using my calculator, working out how many years these men lived for after their myeloma diagnosis and trying to work out how many more years I might have. I know one man who has had myeloma for 21 years and is doing fine ( well as fine as you can with something like myeloma). I know a woman in America who has been living with myeloma for more than 14 years. I know another man here in Ireland who has been living with it for 15 years. I used to be able to quote the myeloma years of these two men who have recently died, but sadly I can’t anymore.

So my calculator has been out because I am not very good at Maths, not this type of maths anyway.

My children were aged 2 and 9 when I was diagnosed. Now, five years after my diagnosis, they are now aged 7 and 15. I don’t ever want to leave them. I don’t ever want to be faced with the fact that I will no longer be around to be their mother.

So today I have been scribbling sums, based on some of the myeloma years and numbers I know: 

• Another 5 years will mean my children would be 12 and 20 which would be wonderful
• Another 10 years will mean that my children would be aged 17 and 25 and that would be just indescribable.
• Another 15 years will mean that my children would be 22 and 30.

I daren’t dream after that.

All I want is to be around to see them growing up into the wonderful young adults I know they will be.

I want to be around to help my daughter choose her dress for her debs, to help her with college choices and to nurture her wonderful writing talent.

My son is so little, he has so much more growing up to do and I really want to be around for all the milestones that he will go through over the next few years: First Communion, Confirmation, Secondary School, his first love.

So I am doing the numbers and they are not very easy numbers to do.

I have had a successful transplant and I am well. I am off all treatment. I am checked every 8 weeks and so far so good – the myeloma is at bay.  I am hopeful that someday there will be a cure. I really hope we get a cure so families can be spared the trauma of living with myeloma.

It’s very hard to live in the shadow of myeloma. It’s very hard to live under the shadow of any cancer. It’s very hard to hold onto dreams. But, where there is life, there is hope. I have hope. Sometimes it is hard to hold onto hope. Sometimes it is just very hard ……..

This week is Myeloma Awareness Week in Ireland. Please spread the word about Myeloma and if you can help in any way with our work and with raising money for research then please email mymyeloma@gmail.com

Brenda Drumm

June 21, 2012

The Sound of Music from a 73 year old Dominican Nun

Sr Ann McGovern OP, a Dominican Sister in her seventies has decided to share her singing talents on cd for the first time.

Sr Ann has been singing all her life and in her day she was a really good soprano. But it was not until she entered her 73rd year that she finally put a CD together. As a Dominican, a religious order referred to as the Order of Preachers, it is no surprise that Ann chose to undertake this project. She currently sings with Our Lady’s Choral Society. The Choral Society appears regularly at the National Concert Hall, accompanied by the National Sinfonia, the RTÉ Concert Orchestra and the National Symphony Orchestra of Ireland. The eminent Irish conductor Proinnsías Ó Duinn has been responsible for the choir’s musical development since 1979.

The Congregation Prioress, Sr Helen Mary Harmey, asked Sr Ann to record the CD so that the sisters would have her recordings as a keep-sake.  The recording project was planned and began in November 2010 when Patricia Feighery who is the music teacher in St Dominic’s School in Cabra was asked to work with Sr Ann to prepare her for the recording sessions.

Mr Ian Callanan, one of Ireland’s leading composers of liturgical music as well as a notable producer and arranger, was asked to record and produce the music with Sr Ann: “The recording took one year to complete. Sr Ann would record one song a week depending on how well her 73 year old voice would hold up. She did a great job and had a great spirit throughout the whole recording and editing process. The end result is beautiful and makes for a very easy listening CD, very peaceful and calming”, Ian explained.

The CD which is called Your Face O Lord, I Seek will be launched by Proinnsías Ó Duinn on Thursday 9th February in the Dominican Resource Centre in Cabra at 5:30pm. Your Face O Lord, I Seek contains 12 songs reflecting a variety of music and it will be available from the Dominican Sisters.

Commenting on her CD Sr Ann said: “I’m very pleased with the result and found the process to be very worthwhile, it has been an exciting journey, one that I hope will bring peace to those who listen to the CD”.

Ends

Notes to Editors: 

The full list of songs follows:How Beautiful are the Feet

• Ave Maria
• Sé do Bheatha ‘Mhuire
• Hiding Place
• Panis Angelicus
• Be Still
• The Lord Bless You and Keep You
• Sé an Thiarna m’Aoire
• Laudate
• An Old Sacred Lullaby
• The Little Road to Bethlehem
• Holy Night

A copy of the cd artwork is available on request from Ian Callanan (icallanan@mac.com) or (086) 249 0779

Two short samples can be heard by visiting http://www.iancallanan.com/music/srann/

About the Dominican Order:

The founder of the Order of Preachers was Dominic Guzman. He was born in Caleruega in Spain in 1170. He died in 1221 in Bologna, Italy.  The first monastery of nuns was founded by Saint Dominic in Prouille near Fanjeaux in the South of France.  The first Dominicans friars, came to Dublin in 1224.The history of the Cabra Dominicans Sisters  (Ireland) dates back to Galway 1644.  A group came to Channel Row, Dublin in 1717. In the 1860’s, sisters went to South Africa, Australia, New Zealand and America.  In the last century they went to Latin America.  The sisters were mainly involved in Education and because of praying the Divine Office had a strong tradition in liturgical music.

Further information:

Helen Mary Harmey OP, Congregation Prioress,  Tel: 01-4055570, E:domgen@eircom .net

Hanging in there with Myeloma

I received a heart breaking email last night from a Mother whose son aged 30 has been diagnosed with myeloma. It's a shocking diagnosis to receive at any age but especially aged 30. I was very upset reading the email, imagining what he will have to go through and hoping that he has the physical and mental strength to get through it and to believe that he can win. I was very moved and upset to by the Mother's pain and anguish and I imagined how I would feel if I had to deal with a diagnosis like this in one of my children.

When I was diagnosed with myeloma I was so grateful that it was me who had received the diagnosis and not one of my children!

Recently I had been wondering if I should just move on and leave the myeloma work to others. Other people I know who were involved in myeloma support groups have moved on as they feel they don't need the group anymore. I was wondering should I move off myself and let others deal with the phone calls and emails that I get on a daily and weekly basis.

When I received the email last night, it was a like a sign to me to stick with it - others need to hear from me and about me. They need to know that it is possible to fight myeloma and come out the other side. This mother needs to hear me and see me so that she can have hope that her handsome son can beat it!

The email last night also reminded me of the day I was diagnosed and how much I would have liked to have spoken to someone: someone who had been through it, someone who could show me that it can be done, someone to show me there is life after cancer - someone like me!

So I will stick with it. I will keep taking the calls and receiving the emails and thanks to the Irish Cancer Society, I will now [hopefully] receive proper training so as I have professional standards as well as personal experience to draw on.

So to anyone
- feeling down this morning
- feeling angry about traffic or something else
- feeling annoyed with someone
- moaning about first world problems

STOP!

Take five minutes, five seconds even to thank God for your health and the health and the love of your family.


Brenda xx


Ends
31 January 2012 

A Living Word

A Living Word is the daily thought for the day reflection on the early morning show on RTE Radio 1 with Shay Byrne. The slot is edited and produced by Aidan Matthews in RTE. This week the reflections are based on themes celebrating Catholic Schools Week which is taking place from the 29 Jan - 4 Feb 2012.

There are five different people involved in this weeks A Living Word and I was given Monday morning to prepare a piece for. The brief is a piece of 250 words and a length of no more than two minutes, so it was tricky to fit in all I wanted to say.

Anyway this is the piece I wrote and recorded which was broadcast yesterday morning. Hope you enjoy it.

Brenda Drumm | A Living Word

Ends
31 January 2012

PRAYER FOR SUFFERING STUDENTS

As the mock Junior and Leaving cert examinations are currently happening for some and approaching for others I thought I would share this little prayer I found: 

PRAYER FOR SUFFERING STUDENTS

Now that I lay me down to study,
I pray the Lord I won't go nutty.
If I should fail to learn this junk,
I pray the Lord I will not flunk.

But if I do, don't pity me at all;
Just lay my bones down in the study hall.
Tell my teachers I did my best.
Then pile the books upon my chest.

Now I lay me down to rest,
And pray I'll pass tomorrow's test.
If I should die before I wake,
That's one less test I'll have to take.

AMEN!

I found this in a book called Liturgies for Post-Primary Schools published by Veritas and put together by Brendan Quinlivan.

A Very Happy New Year of Ordinary Miracles

I meant to write this yesterday but I just could not sit down and focus enough to do it.

Yesterday, Jan 2nd, marked five years since I was admitted to hospital with kidney failure. At the time I was blissfully ignorant that I had a life threatening cancer called Multiple Myeloma, but it wasn't long before I was told on 10.1.2007 - that was the day my life changed forever.

Marking five years is amazing on the one hand, but going over the five year threshold also scares me to death because while I wanted to reach the five year milestone and keep going, I am also aware that the further I move away from my original diagnosis, the closer I may be moving towards a return of my Myeloma.

Sorry here's the sciency bit: Multiple Myeloma is a cancer of the plasma cells in the bone marrow. Only 2% of people under 40 are diagnosed with it so when I was diagnosed at 38 it was a shock statistically and in every other way imaginable.

There is currently no cure for Myeloma but the aim is to keep people like me alive as long as possible in the hope that someday a cure will be found. I was treated with thalidomide and with oral chemo, followed by the good stuff - the liquid chemo. I had my stem cells harvested and frozen. Then I was given high doses of liquid chemo and then had something called a stem cell transplant.

Another sciency bit here: A stem cell transplant is where they harvest the stem cells from your own bone marrow and donate them back to you to rescue you from the effects of the chemo. The hope is that the stem cells will grow into healthy cells - white cells, red cells etc and repopulate your bone marrow and make you healthy again. [Loads more sciency stuff on www.mymyeloma.ie]

I have been in remission since September 2007 and I am so lucky to have been given all this time here with my husband and children. There were times during my transplant when I was so ill, I thought I would not get through another day.

The last five years have been the most amazing ones because I have cherished the time and relished the time in a way that I didn't before. Don't get me wrong, it hasn't been all sunshine and roses, there have been setbacks. I was very lucky to survive a blood clot in my lung on the first day of my Summer holidays in August 2009, but I have improved since then and in November 2010 I was taken off all treatment. I am injection free, infusion free, tablet free for the first time in 4 years and it has been incredible.

When I was first diagnosed I made a deal with God - I asked him to keep me here so as I could see my little boy start school - Cathal was 2 when I was diagnosed and my daughter Emma was 9. I asked God to let me see her making her Confirmation, starting secondary school, maybe meeting her first love. As the years passed by I started to revise my deals [luckily I put none of them in writing and God this blog doesn't count].

• Why shouldn't I be here for exams and boyfriends and girlfriends and for graduation from secondary school?
• Why shouldn't I be here to see Emma walk down the aisle? 
• Why shouldn't I get to be a grandmother. 
• Why shouldn't my kids have their Mum as they grow up?

 It's thinking about this that sometimes can be very overwhelming.

But I am a very positive person and I do believe in miracles - it's a miracle that I am here. That is why I want to spend my time doing things that make me smile, making memories with my kids, doing miraculous things and making each day count.

The list of things I have done over the past five years sometimes makes me dizzy but it has been wonderous and I am not sure if I would have done a lot of these BC [Before Cancer]

Sang on stage with Brian Kennedy
Welcomed the Mooney Show into the house for a concert
Climbed Croagh Patrick
Became a Scout Leader and camped for 9 days and nights at a Jamboree
Started my own radio show in my spare time
Spoke on live tv and radio about my illness despite the fact that I had to sit on my hands because I was shaking so much
Published an audio anthology of writing
Kayaked 10km up a river in Germany as part of a scout trip
Camped in all sorts of places and hostelled
Started a young adult creative writing group
Started a dedicated website and awareness week for myeloma
Gone back to work...
Started to write again and this month I am sending out a submission about the book I have written about my cancer journey....
Most recently the #TwitterXmasSingle .........

The list keeps growing and I am making new memories every day. I am very lucky in a way to have been given a second chance, to have been given time out to reflect on the important things in life, to cherish the ordinary everyday miracles that are all around us in our lives, whether we realise it or not!

So as you start a new year remember that your health is the only wealth you will ever need........and do take time to notice and cherish your own everyday miracles....

"Health is a crown, worn by those who are well and seen only by those who are sick".

I hope to hang onto my crown of health for as long as I can.

Happy New Year

Brenda
xxxxx

Flash fiction by Emma - aged 14

I could feel the tears well up in my eyes and I just wanted to rip them out and crush them between thumb and forefinger, like an annoying bug. They were my weakness. Without sight I wouldn't have seen my baby die and watched my husband jump.


Copyright - Emma Tobin 2011