“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.
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.
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.
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.
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.
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.
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.
🙂
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.
An Irish Girl Interrupted 