"Is your belly all better now Lisa?", this is a question I am asked daily by my 2 year old niece, turning 3 in August. So how do you explain to a child who is close to you or your own children that you have a disease that will eventually take you away from them? Like me you may not have your own children, but that doesn't mean you aren't important to other people's children, whether they be related to you or a friend's child, if you're involved in a kids life and you suddenly disappear, if they're old enough, they will notice your absence.
My niece Ava was born 8 days before it was confirmed that my cancer had returned and that I was indeed a dead woman walking, now as you will know if you've read my previous blogs and if you haven't and are new to my story, welcome, hello, glad to have you onboard, now sit back and get comfy, because I tend to ramble. I initially returned to my original oncologist at St Vincents in Sydney and it was basically a waste of time visit, he didn't offer me anything really, no real advice, no real treatment options, he was a couple of weeks off retirement and you could tell. I heard more about his impending fishing expeditions on his little tin boat that he would be doing regularly upon his retirement than I heard about options for trying to prolong my life, the only thing he did was refer me onto a radical surgeon (that's putting it politely, he was a bit like a mad scientist, I basically got the feeling that he wanted to do the surgery to prove to people that he was above all an amazing surgeon and he wanted notoriety and fame).
I visited with a couple of different oncologists and the outcome of each visit apart from one specialist was basically the same, that I would be lucky to get weeks if not months, but I certainly wouldn't be here in a years time, I only got hope from one oncologist and he was able to give me the confidence and the positive reinforcement that I needed so that I would persist and get as much life out of this crappy situation as possible, months and weeks just did not sit well with me and I have always said I just want to make it until Ava gets to big school, which would make her five, we are now nearly at three, so we are over halfway there, so stick that on your rod "Dr You've only got a few months at best" and fish with it.
So Ava's entire life I have lived with the knowledge that I am dying, I never thought I would be here a couple of months out of my niece turning 3 years of age, so I didn't think I would have to consider how to broach the subject of firstly my illness and secondly my imminent death with my niece, I just presumed she would be too young to understand what was going on with her Aunty, like where did all her hair go? Why is she always in the hospital and she doesn't come home with us? Why does she give herself needles? Why does Nanna give her needles in the bottom? Why does she go in the ambulance sometimes? Why is your belly so fat now Lisa? (This is now a daily one, as my belly is getting bigger by the week due to drugs). So many questions that I never thought would be asked and need to be answered, but here we are and we are at a point that we really need to explain to her what is going on.
Ava sees a lot of things that no adult should have to witness, never mind a toddler. A palliative care ward is scary enough for an adult to walk into, never mind a young child, a palliative ward is full of terribly sick people that are on the verge of dying, this ward is the last point of call that patients go to before saying goodbye to the world, you are surrounded by mostly elderly people who are in a terrible state, they are usually very weak, bedridden, moaning, crying, yelling out in pain, begging to die, terribly skinny, basically they look like they're on deaths door, this is very confronting for adults, never mind a child, but Ava takes it in her stride.
The other day my SIL (Sister in Law) Marianne was on Skype with her Mum and she happened to mention that we had to wait for an ambulance and the ambulance took so long that if I was having a tumour bleed I would've died, to which Ava then piped up in the background and asked is Lisa dying? Marianne obviously was taken aback because she didn't think firstly that Ava would be listening to a conversation she was having with her mum while she was on Skype, because she was happily playing in the background and secondly she didn't expect her 2 year old child to be asking about her Aunty dying. Marianne responded by saying of course not the doctors fixed her, this is when Marianne realised that we really do need to explain to Ava what is actually going on with auntie Lisa, we can't just keep saying she has a sore belly.
Children are not stupid, they are not oblivious to what is going on around them, they sense distress and when they get to a certain age like Ava is now, they become inquisitive, they may not always understand the answer, but they certainly know how to ask the questions.
Another thing I have realised is that many of the cartoons and movies that children are watching feature death, look at Bambi, Babe, look at the lion king and even toy story three, when they're all in the incinerator facing death and they basically just sit back waiting to die, luckily they're saved, but once again kids are faced with the reality that death is part of life. Books that kids read from a young age, like Harry Potter, he loses his parents and many other pivotal people in his life, so children are exposed to death from a very young age, they just don't understand the reality of it.
Ava has found me writhing in pain on the toilet floor and had to alert my dad that Lisa is crying on the floor, this is no sight any child should have to see, but this is Ava's reality, like it is for so many other children out there. Ava has spent more time in hospital rooms and wards than she has had hot dinners, Ava likes to alcohol wipe my injection site before injections, if I'm not at home she presumes I'm at the doctors or hospital, she asks if my belly is better every day and she dresses up in her Doc McStuffins doctors coat and knows exactly how to listen to my chest and tells me to cough.
So what would my advice be to those out there who have to inform their own child/children or a child in their life that an important person in their life is diying? It is all dependent upon the age of the the child/children, for myself and my family we are faced with explaining the situation to a toddler, although Ava is very perceptive and absorbs information like a sponge (seriously, you drop the s word in front of her, she'll dob on you quicker than a Real Housewife of New Jersey will flip a table, she certainly likes to tell on you, Aunty Lisa gets in trouble a lot!). We have to remember that she is still only a two-year-old little girl, although she behaves and acts like an 8 year old and we sometimes forget that, she is still only a toddler.
Over the past few months to years, Ava and myself have gone out at dusk and watched beautiful sunsets and we have pointed out the moon and the stars to her when it gets dark, so she has developed an affection and interest in the night sky. At some point Ava's Mum and Dad will start to discuss the fact that all the stars in the sky are people who have passed away and are someone's deceased loved ones and their job is to look after their families at night. So when I finally pass, a star will be appointed Aunty Lisa and it will be explained that I am no longer here on earth, but I am up in the sky, looking down every night over Ava and our family and I will keep her (and our family) safe at night time when she is in bed (I love this idea, because so many kids get nightmares and are scared of the dark, but if they think that someone in the sky is protecting them throughout the night, this will help them sleep, well this is what I'm hoping for anyway and I'm sure Ava's parents are hoping for the same result). The next step will be that Ava can then go out and speak to Aunty Lisa (the star in the sky) and tell her any secrets, stories or how school was, anything she wants to talk about, she can talk to me in the sky. This gives me comfort, knowing that my memory will be kept alive.
When it comes to older children, I believe honesty is your best policy, I have witnessed a young family, the Mum would have been in her mid 30's and they spoke openly in front of the kids (probably 8 and 13) about her terminal bowel cancer and her terminal prognosis. Don't treat kids with kid gloves, treat them as they deserve to be treated, young adults, that are entitled to know that their mother or father is not going to be around forever and unfortunately their ending will be sooner than most. You have to allow your children the chance to embrace the fact that they are going to lose a parent and you need to give them the chance to show that parent how much they truly love them and how much they mean to them, because let's face it, kids have a habit of fighting with their parents and how many times do you hear a kid yelling out that they hate their parent? So you need to let them know that you have limited time, so they can enjoy whatever time they have with you, because imagine them going to bed yelling at you because they were in a pivotal moment playing World of Warcraft and you're making them go to bed and they hate you and they wish Taylor's parents were their parents and they hope that you disappear in the middle of the night, because you're simply the worst parents EVER!!!! Then you go to bed and don't wake up, is that fair to your child?
I get it, I'm not a parent, so where do I get off giving advice about something I have absolutely no knowledge of? You're right, I don't have the right, but I do have the right to an opinion and this is mine, you don't have to listen to it, you don't have to use it, I'm just putting it out there into the universe, because that's what I do and all I want for those poor kids out there who are going to lose a parent or a person close to them, no matter how old they are, is to have some closure and some level of understanding and acceptance before they go through probably the most horrendous thing a child could ever go through, losing a parent or a loved one to this disease or any other tragedy.
Stay fabulous Rockstars ❤️🤘🏼
Here are just a few websites and links that can help children and adults who are dealing with cancer and bereavement in their lives. I have supplied some web addresses for Australia, the US, and United Kingdom, but if you google you can find many different agencies that can help you and the children in your lives going through this horrible ordeal.
My name is Lisa Magill and I have been navigating the minefield that is cancer since just months after turning 30, people have been saying to me for years that I should put my thoughts into writing and as time has progressed I thought I had left it too late, well here we are nearly 4 years in and for some unknown reason I've decided to start to write today.