A diagnosis of myeloma is a life changing event. I will never forget the 10th of
January 2007 – the day that I was diagnosed. I was sitting in my hospital room
knowing that the results were due that day and knowing that I had more than just a
cold!. A diagnosis of cancer had honestly never entered my head. My consultant Dr
Wall came in to see me early and I knew by her demeanour that it was something
serious. She said you have myeloma. My what? I thought I remember thinking – well
something that has an ‘oma in it can’t be good. She told me what it was and I asked
her two questions:
1. Is it hereditary?
2. Will I lose my hair?
My very first thoughts were my children and I was almost afraid to hear the answer to
my first question in case it was something that I had done to make myself sick and as
a result my kids would be susceptible to it. Thankfully her answer to the first question
put me at ease.
My second question ‘Will I lose my hair’ was if I say so myself like the type of
question you would get from a Hollywood Script. But then I do have a drama queen
inside me just bursting to get out. I mean the hair loss thing is of course huge to have
to face but looking back at it now and in the grand scheme of things for me it ended
up being a very minor detail.
In a way my life as it was ended on that day in January 2007. I had to give up work, I
had to give up a lot of the things that I was involved in (and there were a lot of those),
I had to put a lot of things on hold. I went through a whole raft of emotions after a
diagnosis like that – fear, despair, grief, terror, sadness and these are all feelings and
emotions that you have to allow yourself to process. My husband came in about 40
mins after I had received the news and I remember saying to him “Don’t be too nice
to me” because I was doing my best to stay in control and felt at any moment that I
was going to just cave inwards. That night when everyone had gone and when the
lights were out in the hospital room, I thought I would never get asleep.
My husband suggested I ask for a sleeping tablet but I just couldn’t. I felt that I had to
start dealing with the diagnosis straight away. I did fall asleep and when I woke up the
next morning something kicked in – survival instinct, I don’t know really, but I k new
that I would fight what had been put before me and fight hard. I have so much to live
for and two young children who needed me so self pity just wasn’t an option for me.
After being diagnosed it was initially very difficult for me to let go of my life as it
was. I had a very busy, very active life and to be suddenly told – you are seriously ill
and your life as you have lived it is over for the time being – well that was very
difficult for me. I had to give up work which was a huge part of my day to day life
and give up all the various other things that I was involved in – parish council, radio
programme planning group, diocesan communications committee and all sorts of
other things. It was a huge challenge for me to allow myself to be sick and it took a lot
of getting used to because I just wasn’t used to sitting still or having other people do
things for me.
I was 38, with two young kids, used to giving piggy backs and running around with
the kids, and being sick just wasn’t even on my radar! I almost had to step back and
give myself permission to be sick. I thought I would be defined from then on as a sick
person first and then as a mother, wife, work colleague.
You go through all sorts of stages as I said – the initial fear and worry and the anxiety
about the treatment. When I was discharged from hospital in January 2007 the
Christmas decorations were still up and I remember as I took them down wondering if
I would be around to do the same next Christmas. So the practical, mother in me took
over and I started to write all sorts of details and instructions on the outside of the
boxes, in case I wasn’t around.
I remember too in the early days after my diagnosis that I stopped buying clothes and
anyone who knows me will be amazed by that. I honestly thought that I wouldn’t be
around to wear them. My husband Bryan was amazed and I think the shares in some
of the local clothes shops dropped considerably. I am happy to say that I got over that
–much to my husband’s disappointment, and I was back happily shopping within a
very short space of time.
I very quickly realized that a lot of my initial fears about giving up life as it was were
unfounded – I was still a mum, still a wife and a colleague and while I wasn’t able to
do as many things as I had been used to, I could still have a relatively active life. I did
my best to get the doctors to write me a letter excusing me from housework and
vacuuming but my family didn’t buy it!
Life went on and I grew stronger and more confident about my treatments as each day
passed. I started a journal. I found great peace in doing this and it helped me get a lot
of things sorted out. I also felt a desire to write things down about my life for my kids.
I even thought at one point of writing a book called IN CASE IM NOT HERE but
then the drama queen in me realized that might not be appropriate and I am looking
for a different title! I suppose I wanted to make sure that my daughter and son would
always know things about me and be aware of certain things – should I not survive.
You know the little dates and details that mothers keep in their heads and that the
daddies tend to forget- like in the case of my hubby, the kids dates of births!!!!! As of
Mother’s Day this year I have been recording details in this book called The Mother’s
Book which allows you to record your life and details about your children’s lives for
them. I am filling it out bit by bit and starting to add photographs. I am also making
new memories every day with my children and they are more important than anything
I could put on pen and paper.
People ask me how I got through it. People ask me how I got through it and I say to
them the five f’s – fighting it, family, friends, faith and fun.
Of course the medical teams at Tallaght and St James’s were amazing and I couldn’t
have been in better hands with Dr Enright, Dr O’Connell, Dr Browne and my two
wonderful registrars Dr Larry and Dr Sean.
I have a wonderful family and friends who kept things going at home for us and who
kept me going with texts, cards, prayers and good wishes. I also believe that you find
all sorts of inner strengths when you are faced with something like this. My Dad says
I am stubborn – I prefer the term determined!!!
I mentioned earlier that I am lucky that I have a strong faith because I couldn’t deal
with this illness without my faith.
I felt that I accepted the illness straight away. Myeloma and me are going to be lifelong
buddies so I have to get along with it.. I can’t honestly remember ever asking
‘Why me?’ or thinking ‘Why did I get cancer?’. Why does anyone get cancer? It was
important for me to move on from the diagnosis and get straight into the treatment of
the illness and I felt that if I was focusing on why me or poor me, that it would stop
me from giving all my energies to fighting the disease. For the most part I was and am
a positive person. I have a lot to live for, a lot to fight for. Of course it’s not possible
to be positive 100% of the time and that’s fine too
Fun and cancer or myeloma. They don’t sit that comfortably together in a sentence
but fun was a huge part of healing and dealing with this disease for me. We are all
told how good it is to laugh that it releases all sorts of positive processes inside us and
uses so many of our muscles. We are told it takes more energy and muscles to frown
than it does to laugh. So I laughed a lot. I watched comedy shows, I had a good laugh
every day when I was first home from hospital at a double bill of Murder She Wrote
(which is not a comedy) but you know what I mean. While I was going through my
transplant there were days when if I didn’t laugh I would have cried. I wrote down all
sorts of funny things in my journal including likening myself to Big Brother so the
narrative would go – Day 18 in the stem cell transplant house. Brenda is still confined
to her room and etc etc etc Fun is just so important for lifting us up and helping us to
get over hard days and to help our healing. If you don’t have fun in your lives – get
some, buy some, make some!
People ask me did I cry a lot. I think it’s really important for all of whether we are ill
or not to have a good cry every so often. My kidneys would be very near my eyes
anyway and I cry at the drop of a hat when I am watching TV – movies, award
ceremonies, documentaries and lately Grey’s Anatomy. There were times when I
would be driving along in the car and a song would come on and I would just start to
cry.
I remember another day in between my stem cell harvest and transplant when I was
painting the kitchen and I just started to cry. I let the tears flow and then just got back
to what I was doing. It’s important to allow your emotions space and time and to
realise that no one expects you to be 100% brave all of the time or any of the time for
that matter.
People ask me if living with myeloma has limited me in any way and I have to say no,
that if anything it has made me do more than ever. I don’t get nervous about things
anymore. After going through the transplant and all associated with it, nothing fazes
me in life anymore. I feel that I could take on the world and win. I don’t care from
day to day about menial things and I don’t get stressed in the ways I did before I got
sick.
I took a whole year off and I went back to work in January 2008. I do four days a
week as Press Officer for the Catholic Church and for the past year I was project
manager for the Year of Vocation. Since recovering from my transplant and returning
to work I have been to Rome to the UK and all around Ireland at various things. I
have become a scout leader and I have spent several weekends and a whole week last
summer camping with scouts including my daughter. My daughter and I climbed
Croagh Patrick last July.
It was very tough but amazing to think that exactly a year before that I had been
extremely ill in hospital and there I was on top of the world standing hand in hand
with my daughter.
I have done canoeing, hill walking, stayed in a haunted castle, started cycling again
and I have recently gone back to swimming and I am nearly managing 20 lengths of
the pool. A lot of the things I am involved in I just wouldn’t have done before.
So no myeloma has not limited me.
But in saying that, living with myeloma can be hard. There are days that are difficult
and I want to do is stay in bed. The bone pain and infections can be challenging and I
listen to what my body is telling me and react accordingly. But I get through the
difficult days and keep going. I am cared for by a fantastic team in Tallaght Hospital
and another fantastic team – my family. Myeloma weaves its way in and out of my
thoughts throughout each day. It is a part of me and who I am now. But I don’t feel
despair or sad, I feel lucky.
I said earlier that my life changed dramatically on 10 January 2007 but since then a
whole new life has opened up before me and I am living life to the full every minute
of every day.
I think it is only when we are faced with a serious illness like myeloma that we can
take a step back, almost come off the merry go round of life, and take stock of our
lives. My diagnosis certainly made me do that and it made me realise that there are so
many pointless things that we get caught up in when all that really matters is living
each day to the best of our ability, loving those around us and not being afraid to show
those people how much they mean to us.
As the Americans say I don’t sweat the small stuff in life anymore honey! And I
really don’t. I cherish each day. My kids telling me they love me stops me in my
tracks in a way that maybe it wouldn’t have before.
I am lucky because I have been given this illness and it has made me become a better
person and made me focus on the important things in life. I don’t know what the
future holds for me (none of us here do) so I am making the most of what I have.
I am very lucky and very blessed that I have been given a chance to take stock of my
life and to change my perspective and my goals. Perhaps it is only when we are faced
with death that we really understand the value of our life, the fragility of life, the
challenge that has been set before us to live life to the full – and I don’t mean that in
the sense of partying or frivolity – to live life the best we can. To take time for the
little things in life, for the small everyday joys that filter through even when
everything seems to be going wrong. To take time to tell the people close to us that
we love them and not just to tell them but to show them. Really to celebrate the
everyday ordinary miracles that exist in all our lives whether we realize it or not.
Brian has a song called the reason we are here and I just want to say a few words
about the reasons we are here today:
When I was diagnosed with myeloma I was surprised to find that there was no
dedicated Irish myeloma organisation or website and since then I have had a constant
nagging inside myself to do something about that.
This time last year I wrote an article about myeloma – I called it Me, myself and
myeloma. The Irish Times renamed it me. My life and myeloma. The day the article
appeared I started to receive calls and emails from people who have myeloma and
from family members of people who have myeloma. It was extraordinary. The voice
telling me something had to be done got louder.
Then Mary made contact with me and we were on the same page straight away. We
chatted and we both had the same ideas about what we wanted to see happen. Mary
and I have spent the last year in contact by phone and email. We have only met once
before today in May 2008 but everything just came together for us and allowed today
to happen. It’s amazing really what you can achieve with very little money or
resources but with bagfuls of passion. I am delighted to be here today, to be part of
Ireland’s first National Myeloma Awareness Week and to be part of bringing the new
website to life.
I want to say special thanks to Mary for all her help over the past year and for all that
she has done to bring Myeloma Awareness Week to life. Thank you Mary.
I want to thank Brian for saying yes to today. I won a competition this month last year
and Brian came and played a concert for me in my living room. It was the most
incredible night, one that I will never forget. One of Brian’s songs is called Life, Love
and Happiness and that’s what the night was about it was a celebration of Life, Love
and Happiness. I am do grateful to you Brian for the concert but especially for taking
time out to be with us today. You are a real gentleman.
To those of you here today living with myeloma and to family members I thank all of
you for coming. I want to tell you that you are not alone, that you are part of a very
special club and through this awareness campaign we can hopefully help each other
and support each other and be there for newly diagnosed myeloma patients.
I discovered a song recently called Ordinary Miracle by Sarah Mac Lachlan. Now
before Brian gets worried I am not going to ask you up to do a duet on it with me. I
want to finish by sharing some of the words of the song with you:
It’s not that usual when everything is beautiful
It’s just another ordinary miracle today
The sky knows when its time to snow
You don’t need to teach a seed to grow
It’s just another ordinary miracle today
Life is like a gift they say
Wrapped up for you everyday
Open up and find a way
To give some of your own
Isn’t it remarkable?
Like every time a raindrop falls
It’s just another ordinary miracle today
When you wake up everyday
Please don’t throw your dreams away
Hold them close to your heart
Cause we are all a part
Of the ordinary miracle
Its seems so exceptional
Things just work out after all
It’s just another ordinary miracle today
The sun comes up and shines so bright
It disappears again at night
It’s just another ordinary miracle today
It’s just another ordinary miracle today
Thank you.
Brenda Drumm
19 June 2009
The above text was delivered at the launch of the new myeloma website and myeloma
awareness week in City Hall, Dublin on 19 June 2009.