Chapter 31 – Nothing is ever normal or ordinary again

No one’s life is ordinary. We’re all the heroes and heroines, with fate or flaws to bear. – Maeve Binchy

Nothing is ever normal or ordinary again after a diagnosis of cancer. While I went back to life and back to work, nothing has ever been quite as normal or ordinary as it was BC (before cancer).

You could say that being normal or ordinary is boring. And they are. But there are days when I would give everything I have just to be normally and ordinarily healthy.

Because of what cancer and then the treatment does to the immune system, it is never the same again. A common cold is never that common with me. A minor infection is never just that minor with me. Something more than a cold or an infection is so much bigger and more serious with me.

I have lost count of the times I have had to be admitted to hospital for ‘minor infections’. I have lost count of the times I drove myself in for a check-up, only to find myself admitted to hospital and having to go through all sorts of hoops and loops to get kids collected and the car taken home.

Normal is boring and I have had to come to terms with the fact that I will never have a normal response to any health issue again.

I can’t have anything done without checking with specialists first. I can’t go to the dentist without antibiotics cover. I can’t have a normal appendix operation like everyone else because the infection spread quickly and a one hour surgery became a five hour surgery.

I can’t have any part of me looked after in isolation – the team must know everything.

So that’s no big deal really! It’s not. But what is a big deal for me is worrying that I will go into hospital for a minor procedure, a minor infection, and just not come out again. It has happened to Myeloma patients that I knew…… that I knew….. past-tense. They are past-tense as they did not make it.

It’s hard to deal with this hanging over me. I have to be careful. I have to report in and consult as soon as something feels strange. I have been admitted to hospital with shingles because they were worried about the adverse effects on my organs. I have been admitted to hospital for a wheeze because they were afraid it was becoming pneumonia.

I have been admitted to hospital on day one of a family holiday and the plans have had to be cancelled. I have missed poetry readings by my talented daughter because I have been in hospital. I have missed school stuff with both kids because I have been fine one minute and in hospital the next. We can’t plan long term anymore as we never know how I will be. I hate that I have been ‘sick’ for 10 years out of my son’s 12 years. I hate that I have been ‘sick’ for 10 years out of my daughter’s 19 years. It’s tough on them. I hate saying no to things because I am in pain, or lacking energy.

When I get sick, I go from fine to really sick in a matter of hours. I hate the worry I see in their eyes when this happens.

Most days I get on with it and deal with it. Some days I don’t have the energy to just get on with it and to deal with something else. But I always do.

I know that these bumps in the road are a small price to pay for being mostly well and I am grateful for that.

But sometimes I would just love a streak of being normal and being well that lasts longer than a few months. I would love to plan a family holiday that is two year’s away. I would love to be able to be all the things that healthy Mums are. I would love to be fit enough to do all the things that healthy Mums can do.

Health is a crown worn by those who are well and seen only by those who are sick. I would love my crown back. I would even settle for a tiara of health at this stage.

Brenda xxxxx

 

 

 

Chapter 30 – Getting through a hospital day

There are all these people here I don’t know by sight or by name. And we pass alongside each other and don’t have any connection. And they don’t know me and I don’t know them. And now I’m leaving town and there are all these people I will never know. – Carson McCullers

If you have ever spent time in hospital you will know how the day stretches out in front of you …… it feels endless….

There is a saying ‘She’s up before her breakfast’ meaning a person is an early riser and has all the news before anyone else. Well it’s a bit like that in hospital. I was up hours before my breakfast each morning.

When you have been awake from 6am, had bloods taken, a new delivery of a water jug, a brief chat with the nurse or orderly, the room goes quite again and so your breakfast is one of the highlights of the morning. Now I couldn’t tolerate any food trays at all so I didn’t even have the meals to break the long long looooooong days!

I was also in an isolation room by myself. My window looked out on another building, a concrete jungle. I had to keep the door and the window closed so I was shut away from the sounds of a normal day in Dublin.

For almost the entire month of July 2007 it rained, so I was mostly looking out at rain drizzling down the window. Any time I turned on the radio they seemed to be playing Umbrella by Rhianna.

When I was packing for hospital I had the following to keep me busy/amused/diverted (as one says in the costume dramas):

  • books (as I am a big reader)
  • iPod and docking station so as I had ambient music
  • a mini DVD player which we had for long car journeys for the kids
  • my PSP console with two games
  • a journal for writing

I also had a TV which I had to hire from an external company providing this service to the hospital.

The hospital room itself is very simple. There was a bed, a built-in wardrobe, a table across the bed (adjustable in height), a small side-locker, two chairs for visitors, a sink, and, an ensuite with a toilet and shower. There was a window sill around a recessed window and I was able to store books on that.

I wasn’t allowed any flowers. Any gifts being brought into me had to be de-bugged/de-germed at the nursing station (alcohol wiped) because I was at such a high risk of getting life-threatening infections.

On my bed was a pile of tissues and a plastic basin. The plastic basin was a permanent fixture for vomiting bouts which struck several times a day.

Existing inside this space was a huge challenge for me. Ordinarily in life I am someone who never sits still. I like to be out and about, going here and there, seeing this and watching that, meeting people, seeing friends and family. Being locked inside a room for almost an entire month was not something I had ever planned to do. At times it was the cooped up feeling which was the biggest challenge for me.

There were days when I slept a lot and where I wasn’t really able for any of the entertainment I had taken in to the hospital room. Mostly I wrote in my journal and listened to music. Liam Lawton, Jackson Browne, Brian Kennedy, Sarah Mac Lachlan, Ingrid Michaelson and Paul Simon were some of the voices who soothed me on days when all I could do was lie there. Reading texts from people and opening letters which came in the post also kept my spirits up.

There were days when the TV was on just for company in the background. I couldn’t watch anything to do with food. I couldn’t even watch the adverts if they were about food so I would flick or close my eyes.  I used to watch Murder She Wrote, and Grey’s Anatomy re runs. It did feel a little bit absurd to be in a hospital room whilst watching a hospital drama. But Doctor McDreamy did help to break up the monotony of the room.

jessica-fletcher-face4mcdreamy

Visitors were always so welcome. I was determined for the family situation to stay as normal as possible and therefore I didn’t want Bryan taking weeks off work for me. I also wanted him at home with the kids when he wasn’t at work and I got tired easily so it was hard on me to have someone beside me all day. But I did love the company and my younger brother Conor used to come out and just sit with me for hours at a time. I know that the things going on with me were very difficult for him to watch. My Mum told me months later that there was one particular day in the middle of July when Conor was with me and I had a very bad episode of vomiting. He stayed with me but later when he had said goodbye he called our Mum and said “Brenda’s very bad today”. There was another day he came to see me and he wasn’t allowed in because he had a sniffle. When he reported to the nurses station they took one listen to him and said he wouldn’t be allowed to see me. That was tough to know he was just outside the door, but that he couldn’t come in! It’s hard on the visitors too after they make the effort but the best interests of the patient has to come first.

I didn’t have Facebook or Twitter at the time. It is probably just as well as I am not sure how many followers/friends I would have left, if I had shared all that was happening to me in real time.

Hospitals are so busy nowadays that nurses just don’t have the time they would like to have to sit and chat with patients. That’s a huge shame because those chats and interactions are part of the healing process.

I still received so much care and attention from the wonderful staff of Maguire Ward.  There were nurses and doctors in and out of my room all day. They were always concerned about how I was feeling and were always trying to figure out what more they could do for me to help with the side-effects of the chemo. During the day when I rang my emergency button, it could be any one of a number of staff who would attend. I got to know some wonderful nurses during the four weeks I was in there. My doctors were constants in my care all the way through the stem cell transplant.

But, it was during the night time, even though there were fewer staff, that there seemed to be more time to chat and to just be with them. Anytime someone came to attach or remove something from my line in my chest, they had to use a special kit which would involve cleaning, putting on gloves, and not touching my line with their bare hands or anything non-sterile. It was quite a task to sort out my meds and my food and they had to go through this several times a day.

I wished at the time that there might have been some sort of art and craft to distract me from the awfulness of my situation. But then again I was so sick for most of that transplant month that I am not sure I would have been able for it. I was thrilled to find out recently that they are in fact looking more at art therapy in hospitals and that they have an arrangement now in Maguire Ward for patients to take art. I would love to see more of that. It would have been lovely too to have had someone to read to me during the day, when I was too weak to hold my book up.

So if you know someone who is in hospital please consider visiting them, writing to them (in the real mail) or emailing them, texting them, or gifting them a song (just not Umbrella by Rhianna). It’s the little things that can make all the difference during the long lost days and weekends in hospital.

I need to offer a few words of thanks here to my friends and colleagues who helped to save me from the isolation and the lost days:

  • To Bryan – for everything
  • To Sara – for visits, for foot massages, for helping me with my first trip out of my room and for all the lovely notebooks.
  • To Anne and Nuala – for the Drench drink.
  • To Anne and Father Martin – for being there while I cried.
  • To Rachel – for the foot spa and the rouge noir nails and for being my drinks supplier.
  • To Emma – for pictures and for good night texts.
  • To everyone who sent me letters and cards.
  • To Sharon and Sheila – for the balloons on an especially bad day.
  • To Auntie Jo – for the magic powder from some sacred which is supposed to help women who are having issues conceiving a child!
  • To Marian Keyes, Pauline McLynn and Peter Kay for making me laugh with their writing.
  • To Mum – for the ice cold drink sent frozen from the freezer on a day I was feeling low low low.
  • To Doctor McDreamy and Jessica Fletcher.
  • To Father Kevin for the holy water from Lourdes.
  • To everyone who texted me…..
  • To everyone who prayed for me……

There are no words to adequately say what your small acts of kindness meant to me…. I will repay you all…..

Chapter 29 – In Sickness and In Health

“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.”
Lao Tzu

I could not have come through my Myeloma trials and difficulties without the love and support of my husband Bryan. I sometimes think the diagnosis is much harder for family and loved ones. They stand with you, watching you as you wrestle with the diagnosis of cancer and then they have to stand and watch, feeling helpless as you go through the most awful treatment. They are the real unsung heroes in any cancer story. People tell me all the time that I am brave and inspiring but my hero and the person who got me through my treatment was my husband Bryan.

Our backstory

I met Bryan for the first time in 1993. We were introduced by a mutual friend – a penpal friend of mine. We started dating about two weeks after we met. I kind of knew after a few days of meeting Bryan that I was feeling different about us. I was feeling things I had never felt before. Long before our first date, I kind of knew that he was going to be the man I married. We just clicked.

Our first date was a Howard Jones midnight at the Olympia Concert. I had grown up in love with Howard Jones’s music so when I saw he was coming to Ireland I had to go along to see if he still had the magic. It was a great concert and we left buzzing. The latter part of our first date consisted of us foiling a robbery taking place in the building just beneath my flat and having two burly Gardai (policemen) in the apartment with us for about two hours as they tried to coax the thieves down off the roof!!!! There were fire engines, police cars and an ambulance – it certainly was a date to remember.

We started dating steadily after that. I was living on my own in Dublin and Bryan was based in the Curragh in Co Kildare. We saw each other as often as we could. Bryan was even known to cycle from The Curragh to where I lived in Harold’s Cross in Dublin to see me.

I met his family in October of that year and he met mine in the November of that year. Sentences which had begun with ‘me’ for years suddenly became ‘me and Bryan’.

I should point out that even though I knew after two weeks that Bryan would be the man I would marry, I didn’t tell him that. That would have frightened anyone away. It scared me too as I had never felt that way about anyone up to that point.

“There is never a time or place for true love. It happens accidentally, in a heartbeat, in a single flashing, throbbing moment.”
Sarah Dessen, The Truth About Forever

We both knew it was something serious and in February 1994 Bryan proposed and I said yes. We told only close friends and omitted to tell family as we feared they might think we were moving too quickly.

By anyone’s standards we probably were. Both my sisters were dating people for five years each at that time. And in I would come with a marriage proposal and an engagement on the table.

We started to save for our house from that moment. We went ring shopping and announced our engagement officially in October 1994. We bought and moved into our first house together in June 1995 and we got married on 29 December 1995 in my home town of Belturbet, Co Cavan.

wedding

We had bright blue skies and snow on 29 December 1995 which was one of the happiest days of my life. I remember our wedding vows so well – we said these lines to one another as part of our vows:

“With love and joy I accept you Bryan as my husband
I will stand by your side in good times and in bad”

For so many years we had good times. Baby number one arrived on 5 April 1997 and baby number two arrived on 19 August 2004. We lost a child on Good Friday 2003 and that was a sad and painful time for us.

Emma born
Emma as a newborn
Cathal born
Cathal as a newborn

But we had our perfect little family of a girl and a boy. The next step was to move to a bigger house to give the kids more room and we did that in September 2005. All was going well for us as a family. Neither of us had been ill before. I had an issue with asthma but we rarely went to the doctor or the hospital and we were blessed that we had two really healthy kids.

I am not really a crier. I am a strong person. When something bad happens I am more likely to be the one busy doing something or if I am physically hurt you will find me laughing my way through the pain. If I was ever in pain or in trouble I would always ask Bryan not to be too nice to me because I knew it would be the straw that would make me break down and cry.

It was during the Christmas of 2006 that everything changed for us as a couple and as a family. We are a Christmas family and we make a huge fuss in the house for it. But from early December I was feeling ill. I was hiding just how bad I was feeling and  I knew that Bryan was doing his best to hide his concerns. We muddled through Christmas but by our wedding anniversary on 29 December I was sick – I had no appetite and anything I ate didn’t stay down.

On 1 January when I almost collapsed in the local supermarket, Bryan said enough was enough and he insisted I go to the doctor. When we got the terrible news that I was in kidney failure, we had no idea where it would all end. Neither of us mentioned the word cancer as we just didn’t know enough about it at the time to even suspect it.

When the diagnosis came through finally on 10 January 2007 I delivered the news to Bryan on the phone. He dropped everything in work and made the journey out. While talking to him on the phone I had asked him now to be too nice to me as I needed not to cry at the moment. I needed not to give in to the tears. I needed to feel I was in control. Bryan arrived to the hospital about 40 minutes later and took me in his arms. Of course I cried and through my tears said, “I told you not to be too nice to me”.

“I love you without knowing how, or when, or from where. I love you simply, without problems or pride: I love you in this way because I do not know any other way of loving but this, in which there is no I or you, so intimate that your hand upon my chest is my hand, so intimate that when I fall asleep your eyes close.”
Pablo Neruda, 100 Love Sonnets

All the way through the treatment he was there for me. He was wishing me well, willing me well. He took charge of the running of the house and took over all sorts of chores from me. I somehow have ended up never having to lift an iron since I was diagnosed! Well there has to be some perks.

I found some texts recently on an old phone. They are from 2007 when I was in hospital at various times.

10 January 2007 (day of diagnosis)
Love u. Get a good night’s sleep. Me and your Mam will be up mid morning. Bryan

14 July 2007
Feeling any better? Bryan

14 July 2007
You’re almost there now. Just remember how much we all love you. Try to get some sleep. Bryan

I received texts like this every day from Bryan. He was faced with some terrible sights when he came to see me in the hospital. He never missed a day.

He more than fulfilled his side of the marriage vows in terms  of the ‘in sickness and in health’ bit.

I know that serious illness and trauma can cause friction and fracture in a relationship and I am grateful that we are as together as ever and looking forward to celebrating 20 years of marriage on 29 December this year.

rome 2
In Rome together

There’s a quote from F Scott Fitzgerald which says:

“I fell in love with her courage, her sincerity, and her flaming self respect. And it’s these things I’d believe in, even if the whole world indulged in wild suspicions that she wasn’t all she should be. I love her and it is the beginning of everything.”
F. Scott Fitzgerald

I am borrowing the last line from that and making it my own when I say:

“I love him and that is the beginning of everything”

I  have been blessed by my marriage and all it has brought into my life. I realise nowadays that this can be an exception and therefore it is something to be cherished and valued.

All I want for us now is to grow into an old married couple together and to be able to look back on this time of sickness as a small blip in a very big and wonderful life.

Emma and meIMG_0007FeetBrenda and Cathal birthday pic 2009

Chapter 28 – The Kids are Alright

“Parents rarely let go of their children, so children let go of them.
They move on. They move away.
The moments that used to define them are covered by
moments of their own accomplishments.
It is not until much later, that
children understand;
their stories and all their accomplishments, sit atop the stories
of their mothers and fathers, stones upon stones,
beneath the water of their lives.”
Paulo Coelho

One of the most challenging things about being diagnosed with an incurable cancer is talking to children about it. It’s difficult to know what to say, how much to tell them and whether you owe it to them to prepare them for what might happen.

Cliffs of Moher 2010
Cathal at the Cliffs of Moher 2010 It was safe where he stood despite the sign and we didn’t let him climb over

Obviously kids of different ages will have to be handled differently and when I was diagnosed we were dealing with a nine year old and a two year old. We are now dealing with the on-going issues of an incurable cancer with an 18 year old and a 10 year old. As life moves on and the kids grow up, so too does our approach to what we can say to them.

Cathal on beach 2009
On the beach 2009

I find myself now dealing with an adult in my daughter Emma – a bright, intelligent young woman who knows exactly what my cancer might mean for me and by consequence, our family, in the future. When I was first diagnosed she was the same age as my son Cathal is now. Knowing I had to prepare myself to tell the kids, I asked for advice from someone in the hospital as to what to say  – well to Emma, as Cathal, at aged two was just too young to know what was really happening. Unfortunately, there was no one available to talk to me so we found ourselves sitting in the hospital room with Emma on her first visit to see me, having to find a way to tell her about my sickness. We decided she needed to know just enough so as not to be kept in the dark, but not too much in case it scared her. I told her I had bad cells that would need to be treated with chemotherapy and that I would lose my hair. I told her that I was in the best place with the best doctors and that she should do her best not to worry. Of course she worried and I know that she suspected and probably knew that it was much worse than I was telling her at the time, and I regret that now. She must have known how serious it was with all the sudden visits from extended family and all the flowers and cards arriving. I think by giving her the word cancer as a diagnosis, I was afraid that loose or accidental talk on TV, in school etc. might make her more worried.

Emma at play
Emma doing her most favourite thing in the world

I did eventually tell her in detail what I had and that was on the day I found out I was in remission.  I explained to her what it was and again I didn’t focus too much on the ‘no cure’ line at that stage. She told me that she had known all along that things were more serious than I was letting on. She said she had known by how worried her Dad was and how people sometimes stopped talking about me when she came into a room. I was glad to finally have my cancer out in the open with her.

A few years later when she was in secondary school and when we thought all of it was behind us, Emma got very upset one day in school. She was about 13/14 at the time. It was the Autumn after I had been taken away in the ambulance with the pulmonary embolism.  I was called by the school and I left everything and went to collect her. I knew there was something on her mind and I was worried that it was something happening in school. We drove home and I switched off the car engine and told Emma that we were not leaving the car until she told me what was wrong. I was really worried. I prompted her with questions about school and life in general and she said that nothing about those was bothering her. I said that there was something and then it all came out. This is what she said:

“Mammy she said, it’s you that is worrying me. I am worried that something is going to happen some day and that I am not going to get to say goodbye. I am worried that you will be out somewhere and that something will happen and no one will know how to help you. I am worried that you are going to be taken away in an ambulance some day and that you won’t come back. I am worried that you will be told someday that it’s the end for you and that I won’t have all the time I want to do things with you. I love you Mammy and I don’t want you to go anywhere.”

I was floored. I started to cry and Emma burst into tears and we just sat there in the car, in the driveway of our house hugging each other. We could see the two cats sitting outside mewing and wondering why we were ignoring them. Then it started to rain and their mews got louder and we burst out laughing. I opened the car door and we dragged the two cats into the car.We laughed and cried all at the same time. The cats broke the blackness of the blackest of situations.

I took Emma’s hands in mine and I can remember the words I said to her as if it was yesterday. I said:

“I promise that I am being looked after by the best doctors and the best team in the country. We have some of the most talented myeloma experts in the world so I promise I am in the best care.

I promise you that all my family, friends and work colleagues know exactly what to do if I am taken ill when I am with them and away from you.

I promise that I am well at the moment and that I am not hiding anything from you

I promise that if I am told I only have months or weeks to live that I will tell you because I know that there are things you will want to do with me and things you will want to say to me.

I promise to tell you everything that is going on with my check-ups from now on – even if the detail bores you at times.

I promise that I will fight this and to do my best to be around for you for as many years as I can.”

It was one of the most heart-breaking and difficult conversations I have ever had to have in my life but when I looked over at Emma I could see that a huge weight had lifted off her shoulders and that she believed and trusted that she would be kept inside the loop about everything from that moment on.

I offered her the chance to talk to someone outside the family if she wanted to, but she said she was content with knowing that nothing was being kept from her.

In a way it made me regret not giving her more information sooner than that but I was trying to protect her from all the awfulness and the questions that my diagnosis would raise for such a young child.

Feet
Funny feet in Rome in 2011

About a year after the car conversation Emma started to write her autobiography as part of a school exercise where she had to tell the story of her life using all the letters of the alphabet. This is what she wrote for the letter M.

M – Myeloma

Myeloma is a cancer of the blood, and something I know more about that I would ever wish to. In 2007, my mother was diagnosed with Multiple Myeloma. The cause of Myeloma is unknown, and it is also an incurable form of cancer, as of now, but there are groups working on a cure.

When my mother was diagnosed with Myeloma, I was nine, and most of our long night in the hospital was, in my case, taken up by the personality test on Pokémon Mystery Dungeon Blue Version. I was having a difficult time getting a Squirtle that night, and at the time I never realised how significant that hospital visit would be, and just how many times I would visit that hospital in the weeks and months that followed.

My mom had been sick all Christmas, vomiting up most of what she ate and spending most of her time asleep on the couch. I was worried about her, even then wondering at how often she had been sick, and the time she had spent in the hospital a few months before. She had been complaining of severe leg pain and no amount of CT or MRI scans had revealed the source. After that, she was fine for a while, but around Christmas she was extremely ill, and eventually she allowed us to bring her to Tallaght Hospital to see if something was seriously wrong.

Something was seriously wrong, but I would never, not in a million years, have thought that it was cancer. I remember when they finally admitted her and I went in with my dad. Seeing her in a hospital gown, looking so ill, scared me.

I’m the kind of person who, when I choose to love someone, I love them fiercely. It was very difficult for me to watch what the chemotherapy did to her. I used to visit her every day, even when things were bad and she would vomit all the time. That stuff, it didn’t bother me, as much as the thought of living without her. I used to think that she would never be the way that she had been before, she was so emaciated, so fragile and sometimes I wondered if one day I might come in to find her bed empty. If one day she might just disappear from my life and the house would always be as quiet as it seemed when she wasn’t there, as though someone had ripped out its heart. I used to imagine having to watch my dad crying over her body, and imagine how my brother would have to grow up without a mother, how I would have to grow up without her.

Before her diagnosis, I never questioned that my mam would be there for my first day of Secondary School, for my graduation and for my wedding. I never realised how much it meant to me until the cancer threatened to take it all away, threatened to make me that girl whose mother died, the one that teachers always look at with sympathy. It made me realise what she meant to me, what mothers are to girls.

I was afraid of losing her, having to try and tell my, at the time, two year old brother that mammy was never coming back, to show him that video of her in the hospital, saying she missed him. I didn’t know how he’d ever understand, how our little mammy’s boy ever could understand that the centre of his universe was gone forever.

I was afraid that I’d be a teenager with no mother to argue with, no-one to drive to the shop when I needed female products. I didn’t want to see my dad cry, to see my brother come home from his friend’s house and realise what he was missing in having no mother.

Her cancer has made me treasure what I have, the people I have and though I can imagine the life where the cancer won, I also can’t imagine my mother without cancer. I mean, I don’t think of her as being my mother who has cancer, or anything, but so much of my life has been influenced by her having cancer, I can’t think of a world without ‘My Myeloma’ and ‘The Big C and B’.

Myeloma is a part of my life, and though I hate it, hate what it’s done to me, the realities it’s made me bring into existence in my mind, the tears it makes me shed even as I write this; it is a part of my mother.

My mother the cancer survivor, the creator of ‘Twitter Xmas Single’, the coordinator of the Cill Dara Writers’ Circle,  the co-coordinator of the WriTeen Scene, the presenter of Religion Matters on KFM.

My mother, my hero, Oh Captain My Captain. She gives meaning to Carpe Diem. She is the bravest person I know. Atticus Finch once said that real courage is not a man with a gun, “It’s when you know you’re licked before you begin but you begin anyway and you see it through no matter what. You rarely win, but sometimes you do”. My mother won the fight against cancer in 2007, she could have just resigned herself to the eventuality that this cancer will kill her, but instead she now strives to live her life to the full and I don’t think that anyone could contradict me when I say that she has.

©EmmaTobin 2013

When I read that piece by her I cried so much. Why did I have to be the one to force her to have to deal with such big questions in her life at such a young age?  I felt guilty for a while and then I read it again and again and I realised that regardless of what happened to me, Emma was going to be OK because she had found her voice and was going to be able to process grief and sorrow should the worst happen.

Lego store in Berlin
Lego store in Berlin in 2014
London and Baker Street 2013
On the Sherlock TV series trail in London in 2013

With Cathal it was a completely different story as he was so tiny when I was diagnosed. He was 2 and all he cared about was the fact that I had suddenly just gone from his life. His calls to me asking me to come home were harrowing. I cried every time I hung up the phone.

After my transplant and my final release from the hospital, he would come up to me several times a day and say you came home to me Mammy. It used to take all my will and strength not to cry and I know it made other family members very upset to see it.

As Cathal got older we began to tell him more about my hospital check-ups and eventually when he was close to age 8/9 we told him what Myeloma was. After that he began to ask questions and over the course of a year or two we began to fill in more and more detail for him – without scaring him. He turned 10 in August of 2014 and he turned to me one day and said Mammy I am so glad that you beat cancer. I replied that I was very glad too. He then said: “The reason I am very glad that you beat cancer is because I know that I might not have remembered you if you had dies when I was only two. I was so little that I might have forgotten you”.

I thought I was going to be sick with the shock but I knew I had to stay calm and to deal with this one. I said that I was very glad to be his Mum now that he was 10 and that I hoped to be his Mum for a long long time. I also assured him that Emma and other family members would never have allowed him to forget me. He said “Yeah you are probably right, but I’m still very glad you beat cancer and that I get to remember you myself”.

That was his way of verbalising to me his concern and his fear of not having me around as he grew up. Every so often now he will bring it up and ask me how I am but he’s not gloomy or sad about it and because we talk about things so openly in the house, the future fear has been partially dissolved for him. I am sure that as he gets older he will have more questions and will become more aware of what a diagnosis of incurable cancer means and we will cross that bridge when it comes.

Cathal at Japanese Gardens 2013
Japanese Gardens in Kildare in 2013
Canonball
Cannonball in Cobh
Co Clare 2010
Cuddling in Cobh Co Cork

There are books and websites full of advice on how to talk to your kids about cancer. If I could go back I would probably not do much differently as I trusted my instincts and I think they were right at the time and for the ages I was dealing with. No one knows their child better than a parent and I would always go with gut instinct when it comes to things like this. Trust yourself and the rest will fall into place.

If you feel that you need to talk to someone outside your family then do it. I was very challenged by the out of the blue reactions and questions from the kids but thankfully I was able to deal with them. There will be tears, more predictive grief and you will need space and time to process it all. There’s the TIME word again…… oh the damn irony of time being the one thing you really need when you are dealing with incurable cancer.

Since my diagnosis I have become much more aware of documenting memories of me and the kids. I have thousands of photos, audio recordings of silliness we get up to together, scrapbooks of tickets from outings and holidays together. Emma and I are doing city trips for the past few years – we have been to London and to Berlin and we hope to do Amsterdam this Summer.

I am quietly and carefully creating an archive for the kids of memories made and mischief managed by us as a family. I owe it to them and I want them to have it just in case time catches up with me.

🙂

Scouting 2009 2
Scout Camp in 2009
Scouting trip to Germany 2010
Scouting in Germany in 2010
Scouting 2009
Scout camp in 2009
Scouters in Germany in 2010
Scouting in Germany with Emma in 2010
Titanic inner self
Channeling Kate Winslet in Cobh Co Cork near where the Titanic left from before it sank
Cobh Co Cork
Cathal getting curious in Cobh Co Cork
BD and Emma messing 2015
Silliness in the car in 2015

Note: If you want to read more of Emma’s ABC of Being a Teenager Blog then you can get her posts on the link highlighted. 

Chapter 26 – You Gotta Have Faith

All the world is made of faith, and trust, and pixie dust.
J.M. Barrie, Peter Pan

One of the things I was really glad to have when I was diagnosed with cancer back in 2007, was my faith – the knowledge that the Lord was with me as part of my arsenal of tools to get me through the awful time I had to go through.

A diagnosis of cancer at any age and in any format is brutal. It’s unfair. It’s just horrible. For me a diagnosis of cancer at age 38 with such young children made me start to question what it’s all about. Is there a God? Where was God in all this? How could he allow this to happen? Why is my existence being threatened? Am I going to be around to see the kids grow up? How is Bryan my hubby going to cope – he forgets the kids’ dates of birth at times?

I was numb. I was in despair and I was grieving – grieving for the life I thought I was never going to get to live. There are times even now that I have moments or pockets of despair….and when I worry about not being around but that’s just a fact of living with an incurable cancer.

I was in shock for those first few minutes, hours and days after I received the diagnosis but I remember a slow and steady resolve building inside me that I was definitely going to fight the cancer head on and to deal with whatever it threw at me. I know that sounds like something from a Hollywood Film script but it is true. The resolve came from me being a very determined person (my husband would say stubborn) but I began to realise that while there is so much to do with cancer that you have no control over, there is a lot that you do.

  • So I decided I would learn all I could about it.
  • I decided I would do exactly what I was told by the specialists
  • I decided to be stubborn in the face of cancer
  • I decided there and then in the hospital that I was going to beat it
  • I decided I would allow myself to cry if I wanted to
  • I decided I would pray about it when I was able to
  • I decided I would have to have FAITH …..

In the early days of my diagnosis a priest came to see me in hospital and he brought me a beautiful gift of a photo frame which had an empty space on one side and when you rotated the frame it had a piece of scripture from Corinthans:

“You can trust God not to be tried beyond your strength and with every trial he will give you a way out of it and the strength to bear it…..”

There are no words that I have come across since that best described how I felt about my faith in those first days and weeks after my diagnosis and even today I know that

I can trust God not to be tried beyond my strength and with every trial he will give me a way out of it and the strength to bear it

What a wonderful piece to be able to read and believe.

I never really got angry with God. People are often surprised when I tell them that. I know some people get very angry with God…. with life and the universe for dealing then the hand of cancer.

I remember speaking at a Novena a year or so after my diagnosis and I repeated what someone had said to me during my treatment – They said: God only sends you what he thinks you can handle and sure he knows you can handle this!

People say the strangest and weirdest things to people with cancer. Some people can’t even get the word CANCER out when they are talking to you. Others will whisper it – I was sorry to hear you have the CANCER. Some will avoid seeing you because they don’t know what to say. Some will say something entirely inappropriate like: “Well at least you still have your eyebrows and your hair and you don’t have the heart to tell them your eyebrows are drawn on and that you are wearing a wig!”

Back to God sending me this cancer because he knows I can handle it! Yes that’s what someone said to me early on and for a time I thought it was right. Then a conversation with a Jesuit priest called Father Richard Leonard after reading his book ‘Where the Hell is God?’ made me realise that thesis is nonsense. God sent me this cancer because he knew I could handle it!!!!… Of course he didn’t. I know that now but you listen and believe whatever keeps you going in those early days after diagnosis.

God loves me, he created me in his own likeness and he will never allow as much as a hair on my head to be harmed ……(okay let’s not mention the fact that I did lose all my hair – but I think you know what I mean)

God didn’t send me cancer to deal with – instead he gave me a complete toolkit for dealing with this particular cross in my life

LOVE: He gave me the ability to love and be loved.

FAMILY: He gave me the ability to live in a wonderful family unit where I am nurtured, loved and supported

FAITH: Thanks to God I have faith – faith that no matter what happens, he is waiting for me, he is watching over me and he loves me

PRAYER: I have the ability to pray and to be prayed for.

faith 3

After my diagnosis and due to the risk of infection at various stages of my treatment I was unable to go to Mass. I was very well looked after by the parish with pastoral visits with Communion and I really appreciated that. There was a time too in the early days after the diagnosis when I could not pray. I literally could not find the words, could not find the space inside my head to get my prayers out.

But I knew that people were praying for me – I was told so in the cards and letters I received every day. If you have ever sent a card, a letter, a Mass card to anyone who is sick – I thank you again. Those cards and prayers help to remind us that we are not in this alone, that there is a community of people praying for us and willing us well.

Eventually I did find the words again and I was able to talk to God. I was able to bring things to him – like my fears and despair – that for a time I could not verbalise to anyone else.

People ask me all the time how I got through the harshness of the treatment,

With the prayers and good wishes of so many people

  • With regular trusted visitors who saw me at my most unrecognisable and never let on how shocked they were by how sick and deathly I looked
  • By visits from the chaplain in the hospital who let me hold the pix in my hand as we prayed with me because I was too sick to even have the blessed eucharist
  • By the love of my life willing me on and telling me how well I was doing even before I realised it myself
  • With the support of family who came and managed our home
  • With the support of neighbours and friends who took the kids and did the school run
  • I got through the treatment by reading that piece from scripture about trusting God and then flipping it to look at the beautiful children I had brought into the world and willing myself to be here for them
  • I got through it with laughter and music
  • I got through it thanks to the fantastic advances in medicine and the miraculous care of the nursing staff and the doctors and all the other supports
  • I got through a particularly bad few days when I had a constant nose bleed by praying to Our Lady and I know she heard me ……. I know she interceded for me
  • I got through a night of being very low and having trouble breathing by reading a little book about the life of Saint John Paul. Somehow that book got me through the darkness of that night into the light of the next day……..

So how do I live knowing that I have a life that is going to be shorter than I would have liked? Well the answer is I have to……….

It’s hard.

Some days it is very difficult to have to visualise how my kids will manage without a mum if the worst should happen. But I don’t get to dwell on it too long as the practicalities of life and the demands of being a busy working mum take over ……. Where’s my homework journal? I forgot my PE gear? I was meant to dress up as a Ninja today!!! I was meant to have my tracksuit on today……… etc etc

I remember saying in a very early talk that I feel lucky to have been diagnosed with cancer – of course that’s not what I meant to say, I would much prefer to be cancer free – to have never had cancer in the first place but what I meant is that I am lucky that is made me refocus the way I was living, the goals I had in life and it has made me focus on what really matters.

What matters to me now is simply being here! What matters to me now is being around for my children and family as long as I can.

faith 4

I don’t have a bucket list because I don’t need a fancy bucket list to define how I am going to live out how many years I may have left here on earth.

There are things I want to do of course but for me – my diagnosis of cancer has made me say yes to things I might not have said yes to before and it has made me realise how futile so much of what we spend our time doing is….

While I do worry about the future and sometimes have to battle to keep the cancer demons at bay– most days I am calm about it, I am determined to keep going and I have many a milestone I want to be here for and thanks be to God there are many I have been able to tick off.

I am so grateful to have been here for the million joyous milestones milestones I have had with the kids.

I won’t lie – living with the thoughts of dying young – or youngish *ahem* is not at all easy. Some days are better than others. But I am delighted to be still here and still fighting

Since my diagnosis the thing I love most about my husband (apart from the obvious) is his belief that we will grow old together. The other day we were watching this couple in their 80s negotiating the grocery shopping and they looked like an older version of us. Bryan looked at me and said ‘that will be us in another few years’.

I just love his belief and the fact that he visualises a life with me rather than without me! He makes me love him more every day for that…..

THE JOY OF THE LORD IS MY STRENGTH

faith 5

Death is a part of life for all of us and for those living with serious illness, it’s something which perhaps we find ourselves thinking about regularly.

I take comfort in the knowledge that there is a room for me in my father’s house – that wonderful passage from John’s Gospel: “There are many rooms in my father’s house……….” He is waiting there for us. If I succumb to my illness in the future it is not the end for me……..

That might be hard for people who are not practicing or those who have no belief that there is something after this life to take any comfort from but for those who do, for me – it is a tremendous source of comfort…….

Remember that phrase from Corinthians – You can trust God not to be tried beyond your strength and with every trial he will give you a way out of it and the strength to bear it…..

The Joy of the Lord has been my strength during the last eight years of remission. I am so grateful for those eight years of health. I have had a few scares since the initial treatment but I really have a very good quality of life – that’s all we really want – to have a good quality of life regardless of what we are living with.

faith 7

Pope Francis wrote a beautiful reflection for the World Day of the Sick this year. He said:

Time spent with the sick is holy time.

Time with the sick is a way of praising God who conforms us to the image of his Son, who “came not to be served but to serve, and to give his life as a ransom for many”.

He went on to say that today’s world occasionally forgets the special value of time spent at the bedside of the sick, since we are in such a rush; caught up in a frenzy of doing and producing that we forget about giving ourselves freely, taking care of others, and being responsible for others.

In an earlier address about sickness and suffering Pope Francis said:

“To suffer with patience is not easy. It is not easy whether the difficulties come from without or are problems with the heart, the soul or internal problems. But to suffer he said is not simply to bear something with a difficulty

To suffer is to take the difficulty and to carry it with strength, so that the difficulty does not drag us down. To carry it with strength: this is a Christian virtue. This means we do not let ourselves be overcome by difficulties. This means that the Christian has the strength not to give up, to carry difficulties with strength…”

These are profound words which really struck me.

My hope and my prayer is to have the strength to take this difficulty –  my illness – to carry it with strength and to remember that the Joy of the Lord is my strength always.

 

 

Chapter 26 – Setback #2

We may encounter many defeats but we must not be defeated – Maya Angelou

The Summer of 2009 came and Ireland was in the grips of the swine flu. Swine flu is a respiratory disease, caused by a strain of the influenza type A virus known as H1N1. The first case in Ireland was confirmed by the HSE in May 2009. Those of us living with compromised immune systems were nervous – I certainly was. There were a number of deaths from swine flu and it did eventually become a global pandemic.

So, it was against this backdrop of concern and swine flu hysteria in August 2009 that my second major setback happened.

It was the first day of our family Summer holiday on 4 August 2009 and we were making plans for a trip down the country. I had a scheduled check-up in Tallaght Hospital that morning with my kidney specialist. I left home early and got through the clinic promptly so I was back at home by lunchtime. There were no concerns with the kidney team so I was happy to be free of hospital visits for another few weeks.

About an hour after getting home I was sitting on my daughter’s bed chatting to her when I developed a sharp pain in my back on the left hand side. I didn’t think much of it at first. As I sat chatting to Emma the pain got worse and I thought I might have pulled a muscle. The pain got sharper so I quietly left Emma’s room and walked into my own bedroom. I tried to take a deep breath in but found that I was restricted and the pain felt like I was being stabbed. Cathal, my son, same into the room and I asked him to go downstairs and to tell his Dad to come up to talk to me. A few minutes later Bryan came into the room. He was immediately taken aback at my colour. I explained that I was having difficulty breathing so he called the doctor. They said to come in for 3pm but he said we couldn’t wait so the receptionist said to come immediately.

We left the kids at home in the care of a friend and we drove the short distance to the clinic. The doctor saw me immediately and she was very concerned. With all the talk of swine flu in the air, precautions had to be taken because I was in respiratory distress. She gowned up and did some tests. The pain on the pain scale was over 10 at that stage. I was struggling to get a single breath in and out and I was starting to panic. She gave me morphine for the pain but it didn’t do much for it. She also put me on oxygen which didn’t help much at all as I was really struggling to breathe. All of a sudden I threw up and then passed out momemtarily, breaking my glasses as I fell over. I came around and was really struggling for breath.

My doctor left the room and I knew it was serious as she was obviously talking to someone in the hospital and she did not want me to overhear. She came back in and announced that an ambulance was on its way.

The ambulance crew arrived all gowned up because of the risk of swine flu and I was readied on a stretcher – and also gowned up. As we left the doctor’s surgery we looked like something out of a disaster movie.

I felt that Bryan should go home to be with the kids as I did not want him hanging around the hospital until we knew what was happening.

I was terrified but everything happened so quickly and before I knew it I was in the back of the ambulance with the lights and sirens screaming through the town and up to Dublin.

My doctor had mentioned the possibility of it being a pulmonary embolism and I knew that was very bad news so in a way I was hoping I had swine flu. Bryan went home and googled Pulmonary Odema and scared himself as that meant lung and heart failure.

I knew what pulmonary embolism was. I knew that my friend’s mother had died in the ambulance on the way to the hospital. I immediately regretted letting Bryan go home.

Here comes the science bit about pulmonary embolism:

Pulmonary embolism is a blockage in one of the pulmonary arteries in your lungs. In most cases, pulmonary embolism is caused by blood clots that travel to the lungs from the legs or, rarely, other parts of the body (deep vein thrombosis).

Pulmonary embolism can be life-threatening. About one-third of people with undiagnosed and untreated pulmonary embolism don’t survive. When the condition is diagnosed and treated promptly, however, that number drops dramatically.

The most risky time for complications or death is in the first few hours after the embolism occurs. Also, there is a high risk of another PE occurring within six weeks of the first one. This is why treatment is needed immediately and is continued for about three months

The journey up seemed to take only minutes and I was terribly panicked the whole time. The paramedic was wonderful and was doing his best to calm me down but the feeling of not being able to catch your breath has to be one of the worst in the world.

We arrived at the hospital in Tallaght and while there was an urgency about getting me seen if it was a PE, there was also a strict quarantine and isolation system in place for suspected swine flu cases. I was whisked into a special room and anyone who came into see me had to have the gowns and the masks. It felt really surreal at the time.

Tests were ordered and I was whisked to the special X-ray area and had bloods taken. They erred on the side of caution and treated me with swine flu medication immediately. Then they began the tricky business of dealing with the suspected PE. I had to have a nuclear medicine scan with dye and contrast which confirmed the diagnosis of a Pulmonary Embolism. I was put on blood-thinning injections immediately.

I was really shocked and disappointed and I knew it was most likely a direct side-effect of the Thalidomide. I had been taken off my maintenance dose of Thalidomide as I was starting to lose feeling in my fingers and toes – something called peripheral neuropathy. I should not have been taken off the daily blood thinner I was on and obviously it was the build up of Thalidomide in my system that caused it. This was never confirmed to me as the scenario and I am not blaming anyone – it was just something that fell between stools.

It was another blip on the road to recovery.

At least we had the diagnosis and the treatment plan.

Unfortunately the kids weren’t allowed into see me because of concerns about swine flu and then the possible side effects to children from my being slightly nuclear after the specialist dye and scan. I felt really awful – here we go again I thought – me and my bloody illness destroying family plans and messing up the kids’ holidays. It was at times like this that I really hated being a mom who was always ill! It was hard not to feel like a burden – even though I know that’s not what they thought…… that’s what I felt like at times.

I was allowed out on day release from the hospital after the risk from swine flu and the nuclear medicine had gone and we had a lovely time at a family fun day and at the beach.

Brenda and Cathal August 2009
On day release from hospital with Cathal at family fun day

I spent just over a week in hospital and I was put on new treatment of daily injections to thin my blood. Unfortunately this would mean a new series of hospital visits for me to the Warfarin Clinic which was frustrating as I was just getting used to being a little bit more free of hospital visits.

I was discharged on daily injections which I decided I was going to manage myself, if only to give us the freedom to go and do something by way of a family break. The nurse showed me how to do the injection into my stomach – I had to alternate and go for a different side each day so as to minimize the bruising. It wasn’t the most pleasant thing to have to do as these were full needles and not the automatic ones I had used back in 2007. But you do what you have to do for the sake of freedom.

We were able to get away for a few days as a family and we had a lovely relaxing time together. We were just happy to be together again before work and school life kicked in.

Cathal on beach 2009
Cathal at Curracloe Beach in 2009
Brenda and Cathal birthday pic 2009
me and my little man at his fifth birthday party in August 2009
Cathal's fifth birthday
A very surprised Cathal on the morning of his fifth birthday in August 2009
Cathal's fifth birthday 2009
Our attempt at baking and eating a caterpillar cake for Cathal’s fifth birthday

It was only after all the active treatment had finished that I began to realise how lucky I was to have made it though something as serious as a pulmonary embolism. I was starting to feel like a cat with nine lives and I was afraid to start counting just how many of those lives I had already used up.

Cathal and Emma 2009

Chapter 25 – A Makeover and a Birthday

We were born to be real not to be perfect – Anon

An article in a health magazine caught my eye in early 2008. I had decided to start buying this magazine as I was on an er health drive. I am sure a lot of people do similar things after cancer – start buying juicing books, juicers, organic food etc. While I didn’t go madly down that route, I was trying to be more mindful of health and building up strength. So the article in the magazine was all about life makeovers. I liked the sound of a complete life makeover so I applied. There must be something about the way I write for competitions because I won the first prize again. This is what they planned for me:

  • A meeting with a life coach to discuss where I was in my career
  • A meeting with a life therapist to discuss how I was in my life
  • A session of teeth whitening with a cosmetic dentist
  • Membership of Curves gym
  • A session of non-invasive plastic surgery treatments
  • A complete makeover to include hair and make up
  • A shopping trip with a personal shopper for clothes and shoes to the value of €500
  • A photo shoot to capture all of the above for the magazine.

Now unfortunately the entirety of the package did not go to plan. I should have had all the sessions before the makeover but the magazine personnel messed me around and kept moving and changing the dates. So the only thing that happened before the makeover and shopping day was the teeth-whitening. I was thrilled with the results as my teeth had been discoloured by the chemo and the effects of vomiting.

The makeover day itself was great fun. I had my hair done first thing in a top salon in Dublin. They were all really nice and I had a photographer following all the action. You know the absolute worst time to have you picture taken is when you are half way through a hair appointment – well that’s the sort of pic that was being taken.

Makeover 9

Then it was off to Debenhams to meet a personal shopper. We walked around the shop together and she picked loads of clothes that I knew would look horrible on me, but I went with it. We took them back to the changing room and I tried them on and they were ridiculous. So, we took another walk around and this time I picked the clothes that I knew would suit me. We took them back to the changing room and they were perfect (if I do say so myself).

I also found this amazing pair of boots and my one regret was that I didn’t opt to keep them or buy them myself.

Makeover 8
These boots were made for walking

After the shopping it was time for make-up and I was taken down to a salon near the FHQ building where they worked wonders with my skin and added layers of war paint for the photos. The photographer was around for the foundation level of make-up too – again the worst time for taking pics!

Makeover 1
Getting the war paint on

Then it was time for the photo shoot which was a little nerve-wrecking as he was asking me to pose this way and that way. I am no model but I decided to just go for it and I was really thrilled with the photos. He assured me there was no need for photo-shopping. When I saw the photos as tiny thumbnail images on the screen of his camera I was amazed at how healthy I looked. It was as though the pain, trauma and stress of the last year had all melted away from my face. When I looked at the photos side by side – taken a calendar year apart – I was stunned. How had I come back from being so ill? Even today I can’t quite believe that I pulled through.

Makeover 6S/W Ver: 85.92.70R

Makeover 6

Makeover 4
Very posed
Makeover 5
A cheeky smile

I love having these photos of the makeover as a reminder to me of how far I have come in getting back to health.

As for the rest of the sessions as part of the prize:

  • I was too scared to do anything about cosmetic treatments or botox as I have enough poison from chemo in my body
  • I went to the life career coach and I left after 10 minutes.
  • I never went to the life counsellor.
  • The curves gym session was too comedic for me and I knew I would most likely kill myself running between machines, so I went back to swimming instead.

I loved the makeover and the clothes I was able to keep. I am delighted I won such a lovely prize. I bought the magazine a few more times but it ceased publication a few months later. I also bought a juicer and a juice book and I try to be more health conscious than I was before ……but I’m not a food saint at all.

From time to time I think of those boots …….

Happy 40th Birthday to Me

2008, my year of returning to work and to my life came to an end with my 40th birthday party. We had 50/60 family and friends in the house and it was wonderful. It was much more than a 40th birthday party – I had a house full of people who were there to celebrate my life…….

When everyone had left in the early hours of the morning and the house was quiet again, I sat down with a glass of bubbly and a slice of my cake and had a toast to another 40 years. I’m probably being overly ambitious but who knows…

So please save the date for my 80th birthday party on 29 November 2048!

Brenda Birthday

Brenda cake