Hearing the 'R' word for the first time

At times during my treatment for Multiple Myeloma (cancer of the plasma cells in the bone marrow), I wondered if I would live to see my next birthday, never mind living to hear the 'R' word (Remission) but here I am on Friday 26 September 2014 celebrating seven years of remission.

It's a feeling of indescribable joy really to still be here and to be mostly fighting fit. 

I was reading through my 2007 journal last night and this is what was happening seven years ago:

Wednesday 26 September 2007
DAY WARD RESULTS 

A couple of weeks earlier I had a bone marrow biopsy (ouch) to see if my stem cell transplant had worked and to see if the myeloma was gone. I attended the haematology day ward in Tallagh hospital for results. This diary entry was written at the end of that day seven years ago.

I can't describe how in bits I was this morning. I was wide awake at 5.30am walking around the house, pacing up and down. Sleep didn't come to easily last night either. I got very emotional with the kids this morning - I know they didn't really understand why. I was uptight, nervous and it was very difficult to speak any words that made sense.

I had decided to go to the hospital by myself and I know my family members weren't that happy but that's the way I decided to do it today. If it was bad news I would have time to absorb it myself before I had to break the news to anyone else. People knew I was getting my results today so my phone was hopping with texts all morning with good wishes and offers of prayers.

I dropped the kids to school and delayed a bit chatting to people - all the time prolonging the journey to Tallaght Hospital.

When I got to the hospital I had to have my regular bloods done so I headed straight to phlebotomy. Then it was up to haematology. I had a fair idea that some of the nurses knew my results but they couldn't say anything. I had to hear whatever the news was from my consultant Dr Slaby.

In fairness they all knew how nervous I was and they got me into a side room to wait for Dr Slaby almost as soon as they saw me. He arrived and was a bit concerned about the cough I have. I was sitting beside him and I could see the computer screen. I was afraid to look at it as he pulled up my results. My left hand was shaking so much that I had to sit on it to stop it. I glanced at him and then glanced at the screen and lots of numbers and words blurred in front of me but then I thought I saw the words 'no myeloma present in the bone marrow sample'. I thought I was seeing things so I closed my eyes and then he said the words: "We've done it. The Myeloma is gone'. I punched the air with both fists. I wanted to scream the place down but I somehow composed myself. I don't know how or why.

I honestly didn't hear a word he said to me after that - something about maintenance treatment. Then he realised I wasn't hearing him and he said - that's for another day. He said he was concerned about my cough so he insisted I hang around for an Xray. I was bursting to get out of the office and he eventually said that's it and we shook hands.

I ran out into the day ward and ran straight into one of the nurses who had taken care of me and I said 'I'm in remission' and she said 'I know' with a huge smile on her face. She hugged me and realised how badly I was shaking from shock so she put me into a side office and told me to dial 9 for a line out and not to come out or attempt to leave the hospital until I was a bit more settled. She said well done and left with a huge smile on her face.

Pic of me taken in Autumn 2013 

I dialled 9 and called my hubby Bryan but there was no answer. Then I dialled my mother and just as she was about to talk to me I cut her off. I couldn't work my mobile as I was all fingers and thumbs. Bryan rang me back and it was one of the most emotional moments of my life and I could hardly get the words out. I'm in remission I said and started to cry - tears of happiness. He said 'you deserve champagne tonight so that's what we will do'. It was just a moment of amazement I will never forget.

I called other friends and then my work colleagues as I knew people were waiting and there was such joy and love coming at me down the phone lines from family, friends, colleagues. My phone went into overdrive.

I switched the phone off and just sat by myself for a while taking it all in. I did it. I was in remission. All the awfulness, all the suffering and trauma, all the worry - I had done it. I was in remission.

End of diary entry 

I remember leaving the room and meeting the other nurses - they were all thrilled as they had all been willing me to be well. I owe my life to this team of amazing men and women in the day ward in Tallaght. There was no way to ever repay them for giving me my life back but I am determined to try by staying well for as long as I possibly can.

There was such joy in the dayward but we all had to mindful of people around me who were not receiving good news on the day I got my life back. I went off for my Xray and skipped out the door of the hospital. I wanted to stop everyone I met and tell them that I had done it! I am in remission.

I remember heading home down the N7 singing along to the radio. My daughter Emma who was 9 at the time knew that I was getting results on that day. I remember her school bus pulling up and seeing her walking across the green outside our house so I ran over to her and we just stood in the middle of the green hugging after I had told her the news. She was so happy for me.

It was such an incredible moment. At the time I had no idea that my neighbour was watching - she knew I was getting results that day and she dropped in a card later that day telling me that she had stood at her window watching this beautiful moment between mother and daughter unfold before her eyes. She said it was impossible not to cry!

That was seven year's ago today and there have been so many more beautiful moments that have unfolded in my life and I so grateful for every one of them. 

We all take things in our lives for granted - time being one of them.

I've watched my daughter grow into the most wonderful 17 year old girl. 

I've watched my baby boy grow into a charming and witty 10 year old. 

I'm getting to grow older with my hubby of 19 years. 

Time is the thing I find myself most grateful for. It's wonderful. 

Here's to continuing to kick cancer's butt and to savouring time. 

Brenda 

xxx

The Sins of the Children by Emma Tobin

The mute, mothball shrieks of children dying under mother’s hands
And the fractal bursts of fractured light that hit
As the world tumbles over itself, leaving vague moments...
Like fingernails between the stones

While we, like disapproving books on dusty shelves
Clasp coffee cups against the precious beating of our hearts
Toss cynicism between one another, each drop of sweat a privilege
Each breath a human right

Stuffed straw mouths and shining hair
Religious freedom weighs more than dead children
Leaving corpses littered like cigarettes
Colours in a twisted dream of heaven

Matchstick ribs jutting, but we stood on the moon
How fragile have we made our one,
short and common life? How easily
our complacency is bought.

And in the dull light of big- mooned skies
Ragged lines of blood stutter down, rough
touches underneath a fluorescent fire. Severed
heads belching, toddlers left for flies.

In empty houses seashells wait for pudgy fingers
now bludgeoned shades of navy blue. And
our tots writhe on the warehouse floor, unable
to comprehend a world without Lego.

These shells will not creak in a gruff wind
Stretched lopsided over an imagined territory
An imagined safety, an imagined,
tender world.


Copyright: Emma Tobin (age 17)
September 2014

To Autum and Flu Season

To Autum and Flu Season by Brenda Drumm 

SEASON of mists and mellow flueyness 

Coughs, colds and sore throats 

Conspiring to make me bark and sneeze

  Despite lemsip, paracetamol and dissolvable disprin 

Despite flu jabs, vitamin c and Manuka honey 

Despite old wives' remedies and flat 7up 

        

    You swell my glands and plump up my nose 

You dry my skin 

And block my bronchial tubes

Make my eyes stream and tear up 

Create mountains of Mucus and swollen nasal membranes  

 Until I think my dripping nose will never cease 

  Oh yes the flu has o'er-brimm'd my clammy cells.  

 

Who hath not seen this strand of flu coming? 

Where is my immunity? 

 I am drowsy from the fumes of Vicks vapour rub 

Semi unconscious from the odour of Olbas oil 

    You sit and watch my oozings hour by hour. 

 

Where are the songs of Spring?

Where is our Indian Summer? 

Am I now at the mercy of Autumnal change and Winter weariness? 

Hot water bottle and heat pads to keep me warm 

Ice packs and cold drinks five minutes later 

I'm overheating 

Do I stuff this cold? 

Should I starve my fever? 

Must have lots of fluids

Must eat a little of what I fancy 

Must have Lucozade and multivitamins 

Mustn't have lemsip as well as paracetamol 

Must sleep 

I'm sinking into a duvet day 

Dosed up 

Choked up 

Blocked up 

Chest and nose are whistling 

Not really a lullabye

But I finally

Drift off

Into another season of mist and not so mellow flueyness 

Copyright: Brenda Drumm 

7 September 2014 

Guest post - POEM by 17 year old Emma Tobin

This is my daughter Emma's poem that she wrote for Hopkins Summer School and which no doubt contributed to her winning the overall award. 

One Giant Fuck-Up is Mankind

I.
It was midnight and I lay reeling
Painting myself red.
Wondering why the world felt, suddenly
Like a cage and not a castle.

I have practiced dying all my life
Like a dancer, the poetic pirouette.
I’ll cut so you can’t stitch me up
Horizontal – like the line I crossed

Were puppets meant to cut their own strings?

These razor-bites are questions
I’ve sewn my shaking lips shut
This is my mustered eloquence
Wet stains on toilet paper

Humankind: A Question, posed out of rhyme

II.

When did the light behind our eyes
Morph, meticulously into black and white?
Our morals like soldiers, lined
Neatly, streets stacked with
-Corpses, like hedgegrows

When did it become polite to look away?
When did warzones come back into fashion?
Diplomacy the excuse you cite, credentials
Who said it was neat to build towers on corpses?
Because those are some shaky foundations

When did happiness become a privilege?
When did constellations become stars?
When did it become all we could do
not to slit our life open – little fish?

A kiss would push your breath back in you
But today it is a crime to love
A sin to steal a kiss
Today who we love is a label.

We are the martyrs
We are the clowns
These are our screams
This is our blood
Can you feel it?
Sticky on your hands.

III.

It was midnight
It was morning
I was mourning

For the children with severed hands
For the lovers with electrodes and shaved heads
For the girls with blood on their thighs
For Jesus, who thought we might learn to love

For the ghosts of Mai Lai
For the starved with numbers on their arms
For the healers burned in fear
For the mothers tied to beds

For the victims of justice
For whiskey’s favourite punching bag
For the people who were owned
For those who fell off the buck
When it stopped here

These cuts are questions
This blood, the reply.

Copyright: Emma Tobin 2014

Cancer Demons

Most days I just get on with life - school lunches and school run in the morning, feed the cats, head to work, plan my evenings, prepare for my radio shows, attend meetings, try and get a walk in, collect the kids, make the dinner, do laundry, supervise homework and all the rest of the day to day chores that mums/parents do.

Most days I am so busy that I don't have time to think about having cancer. I don't have time to be thinking about the what ifs or the possibility that I have a shortened life.

Then there are the days when having cancer is all I can think about. Having cancer is the thing that permeates every waking thought and every deep dream while I am sleeping. But it's not so much the having cancer that bothers me or that keeps me awake - it's the thought of living with dying, the thoughts of having to say goodbye to a world that I really had planned to grown old in.

These thoughts are my cancer demons and most days I manage to keep them at bay but sometimes I let them win. I don't mean to...... there are just days when I am feeling low physically or feeling tired and they get the upper hand.

These cancer demons days are spent on the verge of tears. These are the days when I need extra hugs. These are the days when if anyone is particularly nice to me, I might just cry.........These are the days when I start to visualise the end and what it might be like. These are the days when I try to comprehend how my husband and kids are going to manage without me. These are the days when I wonder have I told them and shown them how much they mean to me. These are the days when I wonder have I given enough and done enough to be remembered by them. These are the days when I wonder should I write to them so as they have a card for each of their forthcoming birthdays (just in case). These are the days when I just want to stop and be and savour smells, sounds and sights all around me.

My cancer demons make me fearful about more pain and suffering. I've been there, done that and have the T-shirt! I have courage and faith but treatments are so harsh and have put me into freezeframe in the past. I am strong, but I am not sure I am strong enough to do it again and again and again.....

My cancer demons make me worry about my faith - I do have faith but I worry sometimes that it won't be strong enough to sustain me ........

I have confidence in the medicine and in the fact that there will one day be a cure for myeloma and all forms of cancer.

On these days when the cancer demons are at large, it can be difficult to visualise a future. I feel smothered by the all consuming need and wish to be around for my kids and husband and for myself. I find myself getting jealous of older people and the years that they have had..........The cancer demons make me feel pressure to do all I want to do and to fit in all the things I have not yet achieved.

The cancer demons make me draw a blank sometimes when I try to look at my future.........

Having cancer is a bitch
Having cancer demons is a total bitch

I have waved the cancer demons away for the moment thanks to feeling stronger today. I hope they will stay away for a while and allow me to get busy living rather than focusing on the fact that I might die sooner than I had planned.

Brenda xxxxxx

I have a dream .....

I had to share this - it's a piece from my 17 year old daughter Emma - it moved me so much. The full article will appear in a local magazine but you need to read this: 

"I worry because the world is broken, and no one is trying to fix it.

Is it a little much to say that I have a dream? I have a stupid, hopeless, idealistic dream that one day my children will live in a world where they will not be judged by their music taste, but by their awareness of the world around them. I have a dream that one day the human race will stop languishing in ignorance and realise that the first step in solving a problem is admitting that there is one. I have a dream that one day I will walk through the streets of my home town without fear, that my gender will not dictate my job prospects or my salary.

I have a dream that the colour of my hair will one day no longer decide whether you think it’s safe to let your children wave at me. I have a dream that one day we will read history books and realise that history is not simply a collection of boring facts, but a guide to the future.

I have a dream that one day we will read our charter of human rights and accept that the fact that children are starving in the world is not simply a means of making our children eat their carrots, but a crisis that we must take every step to solve. One day I hope that the child I see being wheeled around in supermarkets will be equally important and equally loved as every other child in the world." 


Ends

Hair Today, Gone Tomorrow [Excerpt from Diary of a Stem Cell Harvest and Transplant]

Monday 4 June 2007
It's just three days since they harvested my stem cells and just over two weeks since my first liquid chemo - cyclophosphamide - and my hair is really starting to come out. It's so thin now that I really can't go out without something on my head. I don't mind so much. I am undecided about whether to get a wig or not. A wig is just not me! It's not like I present the news or am on TV elsewhere ... I don't need it for cosmetic purposes. I don't think it will make any difference to the kids - well I hope not.

Emma has a photo of me on her bedside locker. She said she wants to remember me with hair! I suppose it is her way of dealing with it. She has been so good with all that we have had to throw at her.

Cathal still won't let me out of his sight after being without me for two weeks. He keeps saying "you are my Mammy. I'm keeping you home.". That's tough to have to hear. I underestimated how all of this would effect him even though he is only 2 and a half.

I love my kids so much and I have great determination to be around for them as long as I can.

Tuesday 5 June 2007
Everyone went off to school and minders this morning. When I was making my bed I could not believe the amount of hair that was on my pillow. It's surreal. I thought I would cry once this process began but I haven't. That doesn't mean that I won't. It's a real in your face symptom of my illness but it is also a positive sign that my treatment is progressing. Bryan doesn't seem to mind whether or not I get a wig. I am lucky that he loves me just the way I am - and just the way I am at any particular time.

I remain undecided about the wig:

"To wig or not to wig
that is the question"

I got out of bed this morning
my hair decided to stay
as I pulled on my top and trousers
it spread itself out in the sun
It was strange leaving the room without it
We're usually inseparable! 

 [apparently I wrote this 'poem' in my journal]

Wednesday 6 June 2007
I was coming to terms nicely with having less and less hair. Then I swear a girl with hir the length and thickness mine used to be was standing outside the house talking to a neighbour. Just at the moment it hit me hard that it's going, going and almost gone. I miss the weight of my hair, the feeling of it as it dries off after I wash it. I miss the smell of the shampoo in my freshly washed hair as it billows around me. I do miss it.

Cathal came over to me this evening and handed me two large clumps of hair, told me to put them on my head and said 'there you go now' before walking away.

Thursday 7 June 2007

Today was a hospital day. Dropped the kids to school and minder and got to Tallaght Hospital early. My line and stitches are really itchy. They cleaned the line (this is the central line in my chest that they used for the stem cell harvest and will use again for the transplant). They removed the stitches too and the relief was wonderful. I have been dying to give them a good old scratch but I somehow resisted.

Blood results were good and they say that I am looking well.
I needed a wrist Xray to use as a marker !!!!!

My hair is still coming out in clumps and I am wearing one of those horrible bandanas that I bought from the wig woman when she came to see me. They have phoned me again asking if I want a wig but I have no answer for them as I am still undecided.

I am getting very close to just cutting what's left of my hair off. I have three comb overs and it's just not a good look!

Friday 8 June 2007
My hair is a disaster. I put my hand to the back of my head today to sort out a tangle and it felt like the whole back of my head came away. It didn't! It was just a huge clump of hair - one of the comb overs! I had a shower and more of my hair came away. I decided it was time. I went into the downstairs bathroom where there is a small mirror and no window. I cut off the comb overs and the last few bits of long hair. Then I used Bryan's head shaver and did a complete once over on my head with my eyes closed. I just couldn't look! Then for good measure I got the dyson hoover and gave my head a once over to get rid of all the last bits. Bet that's not on the instructions and uses for a Dyson!

After it was done I was too scared to look in the mirror. I put my glasses back on and looked up and it was shocking. I almost did myself a neck injury trying to look all the way round to the back. I am an egg head, a baldie.

I left the bathroom after what felt like ages. I was even afraid to let the cats see me in case I scared them. They didn't move a whisker. I walked around the house for a while - BALD. It felt strangely liberating to be free of the clumps and the comb overs.

Not sure how the gang will react but I will cross that bridge later.

[This is transcribed from my diary as I wrote it in June 2007 when I was dealing with all the fall out from being diagnosed with Myeloma - a cancer of the plasma cells of the bone marrow. I have not edited this or changed anything.]

 A few year's after my treatment I was inspired to write a short story based on my hair loss experience called 'Well if Sinead O'Connor can live with it'. You can hear me read the story on my Audioboo account at the link below:

https://audioboo.fm/boos/369931-well-if-sinead-o-connor-can-live-with-it-by-brenda-drum

PS My hair grew back really quickly and is as long and thick as it ever was!