Monday, June 23, 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

Monday, June 16, 2014

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." 


Sunday, June 8, 2014

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:

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