The hardest post to write: nappies and chemo

Pamela Sekhon - 30 Jun 18

The hardest post to write 

It’s important to stay positive or more realistically to not be negative. There is a lot a ‘cancer parent’ thinks about and a lot they don’t say about these thoughts. There are moments you cry and moments you stay calm.

When you are told your child has cancer (or maybe meningitis, I really don’t know a comparison) you are helpless to fix them.

No matter what you do, you can’t save their lives. And that’s biggest part of the struggle. The other struggle is trying to cope whilst knowing that one of the most precious and beautiful gifts you’ve ever had the pleasure of loving could die. The overwhelming grief you feel is incomprehensible. It becomes bigger as they start to develop and do more things. My baby isn’t even walking yet but she has started to say her name and wave goodbye. She’s always smiling. The more she does, the more there is to remember…and the more there is to (potentially) miss.

Imagine yourself standing three feet away from a bubble machine and all those bubbles are thoughts. Drifting off into the air. Some hit you and some just go off somewhere. Those bubbles are your thoughts.

The truth is you feel a whole range of things. Some thoughts you have pass by you and some burst like bubbles and you cry as they hit you

I am living in the confines of fear. I’m fearful of the negative outcome and of living without my child. I cannot see myself walk along a beach with two kids. There must be three. I will forever have a part of me missing without this child in our family. These are thoughts you have as a parent in this situation.

Every time we try and ‘be normal’ and do family things, such as joking and dancing around at dinner time or playing in the garden, the joy is immediately followed by an inner despair. The knowledge that this could all be temporary and a much shorter a life than it should be; it all comes crashing back down. And if you speak to a professional about this, this is the one thing you can do nothing about. It is the inevitability of being in a situation such as ours.

Four weeks into our diagnosis, I met a mother who’s son has been battling leukaemia for four years. She said I was no where near as emotional as she was. She said she didn’t get out of bed for a month. She couldn’t function or eat and she was profoundly devastated and crying all the time. ‘But you, you’re just….’ and she put a hand in front of her face as if to say I was blank. And she was right. I was blank. Not because I wasn’t feeling anything but because in front of my children I don’t show how I truly feel. I don’t show them my hurt and pain. That’s not to say the eldest hasn’t seen Mummy cry, she has on a few short occasions. I explain to her that it doesn’t make you weak, it just means you’re sad. And I tell her why I’m sad.

As I see it, my eldest child had 14 summers left before she’s an adult. It’s my responsibility to give her the best childhood I can give her. Having twin siblings is bad enough in terms of the time you lose out on with either parent. Having a disabled sibling with lots of hospital appointments was bad enough, now we have added cancer to the mix. I want my child to enjoy her childhood. I want them all to lead full and long lives.

I don’t want to be selfish and consume their lives with my emotions and how I want to be and how I feel. The truth is I wish I could just hibernate under a duvet, watch Netflix, go on holiday (somewhere really really nice and expensive (for free)), I wish I could cry a lot and not cry again…I wish the ground would swallow us all up and spit us out somewhere beautiful and everyone could just be healthy….but life isn’t like that.

I have to get up every morning and put my normal face on. I have to make everything ok for everyone. I’ve rationalised the situation as best I can but I can’t rationalise the fact I could lose my child.

I’m not ‘blank’. I’m burying everything I feel so that my kids can have the best childhood. One of our consultants got tearful and said ‘you’re such an awesome family and have been through so much…it’s not fair…I don’t know how you’re coping…I’d be falling apart. You’re doing a wonderful job’. Then I explained my analogy above.

The truth is, as parents, we are broken. We are utterly devastated. I cry. When J was diagnosed I cried. I cried. I was overwhelmed. I was grieving for the relationship I wanted to have. But with Booboo it was different. I cried when they told us. I swore ‘how the f**k can this be happening to us? How can this be happening too? What the F**K? I can’t lose my kid. I can NOT bury my kid. I cannot bury this kid. She’s supposed to be the healthy one.’

I wept quietly. I asked questions. I got angry. I broke fast and I was still breaking slowly. And then we had to step into action and get an urgent X-ray at night to make sure the cancer hadn’t spread into her lungs. It hadn’t.

Shock. Fear. Anger. Rage. Sadness. Sorrow and devastation. These are all the right words to sum it up.

I came home. I couldn’t look at her without crying. I saw my ‘rock’, my husband crying in a way I had never seen him crying before. He was breaking in front of me. He was the one that was always strong. He has seen us through everything else. A quiet, considered solid decent human being – it was painful to watch him so hurt.

I had to be utterly exhausted to sleep that night. I slept about 2 or 3 hours. I cried most of the night. Silently for hours. I got up and looked after my kids who were smiling back at me. And I cried the same the next night and the night after. I bought a camcorder at 3am form Amazon. I had an urgent rush to capture everything everyone else can take for granted. A photo wouldn’t be enough. I didn’t want to forget her and all her beauty. Clicking on ‘Proceed to Checkout’ was heartbreaking. I cried.

I had to be on the go non stop. I was exhausted. Things moved quickly. We needed tests, scans we needed to insert a Hickman Line (that goes into her heart and comes out of her body), she needed to be sedated (6 times so far in two months). I cried when she smiled. I cried when I stopped – there’s a moment when you put your key in the car and …you have to stop..get your bearings before you drive off. I cried in traffic. I cried in the shower. I cried when she nuzzled into my neck and had a cuddle. I cried when I kissed her as she lay still under general anaesthetic. You don’t stop crying. You have moments of calm and moments of fear.

As time goes by you have tests, long waits for results, you watch your kids suffering and you have more tests and you have more wait and all the while this cancer bast-rd is living in your child’s body. We were used to tests as we had numerous over months for JJ. This was different. This time it’s life or death. I’ve always prided myself on being an honest straight talker. Now I’m concentrating hard and learning fast to pretend things are ok.

So I am not blank. I’m hurting like every other parent. I’ve rationalised the situation quickly. We need to fight this a–hole cancer that’s in my daughters body. That’s what we need to do. And we need to not allow the negative to consume us. I’m not blank. I’m just good at pretending things are ok for the sake of my kids. I don’t want them exposed to fear and pain. We have used age appropriate language to explain things in an honest way. We have told her what she needs to know. I hope when she’s older she says ‘Mummy you did a great job. It must have been hard for you’ and I’ll say ‘you made it easier. You filled my life with love, joy and light’. My kids make me smile and give me strength.

https://mythreelittlebears.wordpress.com/page/35/

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Pamela Sekhon

https://mythreelittlebears.wordpress.com

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