Musings – Homework for myself for the Summer of 2015

I am going to keep having fun every day I have left, because there is no other way of life. You just have to decide whether you are a Tigger or an Eeyore.
Randy Pausch

In our house school is already out for our 18 year old and not just for the Summer but forever. She has officially finished her secondary school days and we now await the results of her State exams so she knows where she will be going for college.

For our 10 year old school is almost out for Summer as he has just four days left. As parents we have the worry now of how to make sure we keep our kids busy for Summer so as they don’t do much gaming and too little of the outdoor stuff.

Well a teacher in Italy has come up with a homework list for Summer – but this is homework with a difference because instead of giving the students essays to do or projects to complete, he has given them this list of 15 things to do. Here is the list:

1. Sometimes, in the morning, go take a walk along the seashore completely alone.
2. Try to use some of the new words we learned together this year.
3. Read as much as you possibly can.
4. Avoid things, situations and people who make you feel negative or empty.
5. If you feel sad or afraid, don’t worry.
6. Dance, shamelessly.
7. At least once, watch the sunrise.

summer 2
8. Play a lot of sports.
9. If you meet someone you find enchanting tell him or her as sincerely and gracefully as you can.
10. Review your notes from our class.
11. Be as happy as sunlight and as untamable as the sea.
12. Don’t swear.
13. Watch films with heartbreaking dialogue.
14. In sparkling sunlight or hot summer nights, dream about how your life could and should be.
15. Be good.

End of list

What a wonderfully simple idea. If anyone was able to do even half of these things over the Summer then I would imagine the richness and the rewards would be fabulous.

So I am setting myself the challenge of doing my own list of simple things over the Summer. Despite all I have been through with cancer, I still tend to forget the simple things so it is no harm to be reminded and to get refocused from time to time so as I can really keep sucking the marrow out of life!

So this is my Summer challenge to myself. I may have to amend the list as I don’t live near a beach etc but I am going for it……and I will add a few of my own…

I will let you know how I get on.

This weekend I might just begin with number 6.

Life getting in the way

There are new chapters coming this week, I promise.

For the past few days life has just been getting in the way of posting and writing.We have had the celebration of some milestones of graduation and major State exams in the house. They are all finished with now and we are getting back to normal.

Thanks for continuing to check in with the book/blog. Your patience will be rewarded 🙂

Brenda

xx

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.