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!

Excerpt from Diary of a Stem Cell Harvest - No Editing, No Filter!

This time seven year's ago I was in the middle of a two-week process of harvesting my own stem cells. I was reminded of this yesterday at a talk I was giving on Lough Derg about living with cancer.

I thought I would share two actual diary entries that I wrote as I was going through the stem cell harvest process on 23 and 24 May 2007. This is exactly as I wrote them in my journal - no editing and no filter:

Wednesday 23 May 2007 DAY 3

1.30am, the early hours of this morning the awful nausea turned into actual vomiting - gut wrenching vomiting. I was attached to the IV fluids so by the time I realised what was happening I only had time to unplug it and make it to the sink in the room and not the bathroom. Eugh
It brought back memories of the awfulness of the sickness I had last December. I was dripping with sweat and my new surgically inserted line started to ooze - so painful. What a horrible feeling.
I did manage to get back to sleep but I had a lot of pain and was generally very miserable.
When I saw the doc early this morning he said he would write me up for some strong anti-sickness meds. Liz came down and she was unhappy that I was allowed to be so sick so she got onto it too.
I threw up again at 3pm - really bad, really painful - it was my own fault. I should not have drank a can of LILT - but I was so raw and thirsty.
I decided to walk down to the shop and was asked by one of the nurses to get a paper for the man in the room across from me - JOB done, after a tentative walk......
I had a visit from a medical student who had to assess me. He asked me at the end if I was a doctor or worked in medicine - Ha ha! Doctor's coat anyone?
PS Cyclizine drug is my new best friend - no more sickness today.

Thursday 24 May 2007 DAY 4

EVERYBODY HURTS SOMETIMES
NEW SERIES OF GREY'S ANATOMY TONIGHT  (for some reason I have that written on the top of the page - no idea why)

I woke up with this morning with a great sense of relief. I slept well apart from couple of trips in the night - false alarms. I wasn't sick so the new anti sickness drug is working. Cyclizine is working - what a relief. I have to remember to get scripted for this in advance of the next set of chemo. NOTE TO SELF WRITTEN

I had jelly and ice cream for lunch. I couldn't eat anything else. I did the scene from Jurassic Park with the jelly shuddering and shivering on the spoon in the girl's hand. Screen test anyone?

The nurses and doctors are lovely. They are so caring especially when they see how miserable you are. They just can't do enough for me. I have nothing but respect and admiration for them.

Saw Dr Enright - she is happy with me and my response.

Emma came up (that's my daughter who was 9 at the time) and I know she misses me. She is full of questions about my line in my chest and the meds I am on and constant fluids. She is such a gorgeous girl. Bryan said I appear to me much better, more relaxed about my time in hospital this time round. I guess I am more relaxed as I had notice that I was going to be admitted and had read up on all that was going to happen so I was able to plan.

Friday 25 May 2007 DAY 5
ELECTION

Another good night last night. I think I was up twice for two more false sickness alarms. Very vivid dreams. Bryan was telling me that Cathal has learned how to climb up and into his cot so I guess that now means he can climb out too! Oh O!

I am in good form today. I asked the doctors about getting out for day release and he has to check with the consultant. I doubt she will say yes. I am still on the anti sickness drugs and am scared what will happen if I come off them. I am now on the other injections into my stomach for helping to mobilise my stem cells.

My Mum told me that Emma sat Cathal down and was explaining to him that I now have a line sticking out of my chest and telling him he can't touch it and needs to be careful and gentle. He said I will be careful and I won't pull it. I am aching to see him.

I had a great chat with Emma tonight. She is just adorable and I hope that I am and can always be the mother she deserves.

I am so excited - just found out I am allowed out for a few hours tomorrow.

Cathal phoned with the help of Bryan at about 9.30 tonight and said: "Where are you Mammy? I miss you." I thought my heart would break. Then he said "Love you Mammy".

Are there any nicer words to hear from your child?

Signing off for the night.

Ends

I kept a journal faithfully during my year of sickness and I am hoping to publish it soon as a book called LIFE FINDS A WAY.

Follow me on Twitter @BrendaDrumm

Being a Teenager

This is a guest post by my 17 year old daughter Emma 

"Among other things, you'll find that you're not the first person who was ever confused and frightened and even sickened by human behaviour. You're by no means alone on that score, you'll be excited and stimulated to know. Many, many men have been just as troubled morally and spiritually as you are right now. Happily, some of them kept records of their troubles. You'll learn from them—if you want to. Just as someday, if you have something to offer, someone will learn something from you. It's a beautiful reciprocal arrangement. And it isn't education. It's history. It's poetry."

– J.D Salinger (The Catcher in the Rye)

When I stepped over the precipice of innocence into adolescence, into the supposedly terrific and terrifying teenage years, during which (if one believes ‘Little MissSunshine’) I was to acquire all the suffering that would shape whoever I turned out to be, I had certain preconceptions that have proven mostly, wildly inaccurate.

Firstly, I believed that I would become cool. If anything, I have become less cool, enmeshed in the claws of Battlestar Galactica and Star Trek and Doctor Who. Secondly, I believed that I would become corrosive and irrational. Instead, I maintain fluid diplomatic relations with my family. Thirdly, I believed that by the end of it I would know precisely who I was and what I wanted to do with my life. Of all my widely inaccurate expectations, that was pretty high on the delusional scale.

At some point in the past two years, I reached the terrifying conclusion that I have one life; one chance to do everything right, and it was absolutely terrifying. My teenage years haven’t given me one iota of wisdom about myself. I could tell you about the Cold War and The Beats Generation of artists and writers in New York City, but when I’m asked to say two things about myself I am rendered uncharacteristically speechless. I think that most people my age feel more or less the same way, and while it’s comforting not to be utterly alone, it doesn’t exactly help.

I believe that there’s a myth about adolescence as being uncoordinated and illiterate when it is anything but that. It’s during these years that we must make the choices that determine the rest of our lives, and that’s a lot of pressure to put on sixteen-year old shoulders. It’s a swirly whirly vortex of different ideas. We struggle with religion, with consensus, with sexuality, with the very foundations of our moral system, and yet at the same time we’re expected to learn things about maths and geography.

I’ve catapulted between cynicism and idealism and then challenged the basis of these categorisations; I’ve changed my mind about what I believe in dozens of times. I’ve wondered about God and been more than a little horrified by the crimesof those who came before me. I’ve read a thousand books; I’ve thought a thousand different and contradictory things. Honestly, I feel like an old woman already.

I’ve also memorised Pythagoras’s Theorem, learned how to motivate imaginary employees, and sat bewildered by the difference between diverging and converging plate boundaries. I am a person constantly in flux, but while I’m at it why shouldn’t I decide what to do with the rest of my one single precious life?

Being a teenager is hard. It’s one of the most difficult thingyou’ll ever go through. It’s so hard that some people don’t make it to the other side. All the same, it’s a brilliant time. It’s like when you’re on a rollercoaster and you’re slowly edging up to this massive height and your stomach is sick, you feel like you’re going to fall out and smash into a million pieces as people look on while eating peanuts and candyfloss. But, once you get to the top there’s a relieved, exhilarated sort of excitement slamming your heart against your chest. In the end, the triumph of reaching that giddy height is worth the slow and painful ascent.

I suppose that being young is simultaneously the worst and best fate imaginable. You’ll look back with nostalgia to your legging-wearing, Adidas-sporting days, but there isn’t enough money in the Western economy to persuade you to do it over. You’ll be terrified that, no matter how badly you did it the first time around, you might mess everything up even more spectacularly if given a second chance.

Even if I don’t reckon I’ll ever settle definitively on the one thing I want to spend my life doing, by the end of my teenage years I think I’ll have an idea, a murky inkling I can somehow grope my way to. It isn’t anything as concrete as a career name, but a dim sense of something indescribable. I think that one day I’ll take a blind step down the road of my life and it’ll feel like I’m finally headed in the right direction. It’s as simple and as complicated as that.

 

Copyright:  Emma Tobin 

April 2014 

Discovering my old life in Ballybay, Co Monaghan via Facebook

I don't know if you ever check the OTHERS option on your Facebook messages. I don't check it that often but did so today at lunchtime and I found a message there from a girl I have not been in touch with for 35 years.

Her name is Maria Cosgrove and she is from Ballybay - a small town in Co Monaghan. I used to live there with my family until we moved away in 1978 after my dad, the local Garda, was transferred, as was the custom in those days.

We had great friends in Ballybay. I started primary school there. We had a gang called The Hall Street Gang. We had adventures like those kids in The Goonies, or the Famous Five or Secret Seven had. The Hall Street Gang was the gang of kids who lived in a cluster along Hall Street. We met in the lanes and the fields and sometimes in the Garda shed.

The Drumms, Maguires, McMahons and the McItaveys were the main members of the Hall Street Gang (I hope I am remembering the names correctly).

A photo taken sometime in the mid seventies, captures us in colour, outside the Garda Station which was really in our front garden, underneath the three big Cherry Blossom trees that adorned the grass verge on the way up to the door of the station.

There was no email, text, Facebook or Twitter in those days and the house we moved to did not have a phone. I recall a lot of tears the day we left as we hugged and promised to keep in touch and I do remember a few visits back for different things. Some of our friends from Ballybay also came to visit us too in our new home.

But time passed and we grew up in a brand new town and made new friends. We sadly lost contact with our friends from Ballybay.

But I have never forgotten Ballybay and the gang of friends we had. I remember happy times in the house we had behind the Garda station. I remember being outdoors in all weather, getting lost in the fields on purpose, collecting blackberries and selling them to local shops - sometimes the money went to the nuns in the Convent of Mercy and other times it went to buy sweets for the gang.

I remember plays we used to stage in the garden and in the Garda shed. We would charge people 10p to come and watch a variety show which was never very good, but which people (well other children) came to watch.

I remember Community Games in the big park. Relays, hurdles and my breath being almost taken away with the exertion.

I remember the teachers we had and moving from the small school to the brand new purpose-built school with the new carpets, the new desks and chairs that were proper chairs and not old benches with ink wells.

I remember Sister Philomena, who was small and gentle but very capable of keeping things moving. I remember a few year's ago learning of her murder and trying to understand how something so awful could happen to someone so gentle.

I remember swinging and balancing on the bars and railings and my sister breaking her arm. I remember being run over by my Dad's car in the school yard and all the visitors to the house who I bet could scarcely believe I had survived - what 4 year old survives being knocked down, trapped under a car and driven around a tough tarmac school yard ? I remember our postman and Miss Salmon chasing the car and shouting STOP before it pulled out onto the main road.

I remember swinging on the gate and getting that little scar under my lip when the gate slammed shut. I remember walking the walls on the way up home.

I remember the embankment at the back of the corner shop where we disturbed a wasps nest and where my sister was stung several times. I remember the smell of vinegar on the stings.

I was part of an Irish dancing troupe in Ballybay. The costume was cream with purple Celtic designs. For the life of me I can't remember the name of the Irish dancing school. I remember my dancing partners Damian and Catriona Carragher. We were a great group for the three-hand reel.

I do remember the sweet shop at the top of Hall Street, conveniently located on our route to school. The shopkeeper Mrs Daly always seemed old to me in those days. She had a counter with a glass front filled with trays of sweets. Depending on how much (or little in my case) money you had, you asked for the corresponding tray and knew that everything on it could be bought for halfpenny, a penny, two pence or five pence. I am not sure if there was a ten pence tray. Katie Daly was her name and through my conversations and subsequent connection with a Facebook page called BALLYBAY AND ITS PEOPLE, I found out that she is alive and well and in her 90s. How I would love to sit down with her for a chat.

I have been hanging out on this Facebook page for the past few days and I shared this picture taken as I mentioned earlier, in our front lawn adjacent to the Garda Station.

The Hall Street Gang sometime in the 1970s

Since posting the picture I have chatted to three of the people in it. I have not spoken to them since we left Ballybay in 1978. 35 year's later and it's all come back to life through the power of social media. It's been great.

I am looking forward to having more memories refreshed by these new old friends from Ballybay. So do check that OTHERS folder on Facebook and if you are ever in the area do give Ballybay a visit.

It seems it has always been the place where everybody knows your name!

THE STAR IN A LOSING SKY

I watch you through the window of my soul 

Angel of nameless grace

Through the twisted tangle of my heart
I will wait for you beyond

Summer fingers dapple on my shuddering shoulders 

The lines that time has forgotten
Leaves whisper your voice into my ears as I cling
To the chandelier of my life

I am as a changing day, wanting in all aspects
But that of blissful hope
The burst of cherries on the tongue of a waking hour 

When I will sleep
Spread out on a bed of clouds, staring
Across the spaces
As my body spills onto the world below
And I am nought but rain or snow
Forgotten words on aging lips, a memory of a day Full of hope and raining death. 

Emma Tobin 2013 

Copyright @ Emma Tobin