Sunday, 20 September 2015

As I said to my older sister the other night, let's not do the last week again. Ever.
I am so exhausted, and none of it actually happened to me. I was just watching from the sidelines, cheering everyone on and consoling them when they came out of the game. But as it turns out, this week our family won the game. We survived it and are smiling, even if most of us want to go home and sleep for the next two weeks.

My sister is recovering well from her op, and my mum is like a superwoman. She was allowed to go home just three days after her brain surgery. This time around it hit her harder though and she went through the wringer a bit on Saturday, the day after surgery. As it turns out, the tumour had grown quite rapidly so a bigger incision was needed to remove it. It had also hemorraged prior to surgery - no wonder she had felt so crappy and in such intense pain!

Going to see her the night of her surgery was an eye opener. In HDU, surrounded by patients who were completely out of it, some groaning in pain, some obviously unable to move their own bodies, there was mum. Eating falafels and cracking up at her own jokes. She really is superwoman. But she's under no illusion of her powers either.

I often see posts in regards to melanoma and people being clear for a certain number of years. I hate to be the pessimist but mum was clear too once. For five years after stage 3 melanoma on her ankle she was clear. When it grew back in her lymph nodes and she had those removed, she was clear for 4 years following. Then it was the worst of the worst. It hit her brain.

Now mum views it as a disease to be managed, not cured. And sadly, I agree. Cancer does not discriminate. I have seen too many children in the past 3 and a half years since Olive was born dying of melanoma directly related to their CMN.

Because people with CMN have an increased risk and so do people with a family history of melanoma, that scares me. The chances of my daughter developing melanoma, though still slight, is still a very real fear.

She came to me yesterday and showed me a bump on her nevus. I'm fairly certain it is a bite of sorts, but instances like this this still open up that vault of fear that, for the most part, I have locked away until there is reason to open it. Things like this start the key turning slightly.

So I will watch it this week and if it doesn't heal we will be off to her doctor to get it checked.

She's changing, our girl. She is still crazy and outgoing but she's getting more self conscious. Don't get me wrong, she is still keen to run around naked at home and doesn't care if part of her nevus is showing (it actually doesn't even register at her age!), but she is less willing to show people if they or we ask. And fair enough too! Can't say I'd want to show off my body parts if someone asked me to! The difference is though, that I am 31. She's 3. I've had a lot more experience and exposure to 'society's norm'. I'm well aware my body is far from perfect, yet I try to embrace the changes as the reality of carrying and nurturing babies. In a perfect world, little girls shouldn't be self conscious. They shouldn't have to feel shy or embarrassed of what they are born with - things they have no control over. Yet they do. My 8 year old, Meisha, has very defined muscles in her upper back. She is strong and can do a lot with her strength that other girls her age can't. She can do stuff women my age can't!
Yet when I said to her, 'bub can you show Aunty Chels your strong back?' (I was very impressed and I knew my sister being a personal trainer would be too!), she went all shy and coy and said no. I never push my kids with things like that. It's their body and they control who gets to view it!

Unfortunately for Olive, with her annual dermatology appointments she will have yup expose her entire body for someone she barely knows. As she gets older and less willing, I realised how important it is to make these experiences positive ones. Olive can be very shy around men in particular and as her current derm is male, I have requested she be changed to a female. The doctor I have requested we be changed to is a brilliant dermatologist with many years experience in CMN - some even in Great Ormond Street hospital where a lot of research in regards to CMN takes place.
That's not to say our current derm is any less. Not at all, but in my world my kids come first which is why I requested the change - so that Oli is as comfortable as she can be, given the mild invasive ness of the nature of her visits.

So fingers crossed we hear back soon as to whether this can be done.

In the meantime, we are celebrating having my husband home from his holiday in Tahiti and tomorrow is the start of a new job for him. Exciting new beginnings!

Thursday, 10 September 2015

There's a lot to be said for family. I was blessed with a huge one. And not all of them are blood related. Many I have known since the day I was born and many more I have met along the way. I love them all so much, and couldn't imagine a life without knowing them. Most I don't see nearly enough but when push comes to shove, they are there. Waiting. With arms open wide and hearts full of love.

Tomorrow is D Day for Ma. Her second surgery to remove the tumour. She was admitted today and is first on the surgical list tomorrow for 8am brain surgery. Another giant step in Mums courageous fight against this god-awful disease threatening to take her life. She's so brave. She wasn't nervous today when we went to say our 'see you when you wake up' goodbyes. I am though. Surgery is scary. Especially when it's your mum!

We were thrown a curveball though when my older sister was admitted to hospital with suspected appendicitis. Today has been a waiting game, with her in tremendous pain, waiting to be called in to surgery. She has just finally come out and it is now 10pm and I am sitting in the hospital waiting room. Normally bustling with activity, it is now dead quiet and an eerily good place to reflect on a shitter of a day.

Today has been psychologically exhausting, but it's shown me how lucky we are to have such an amazing network.
My sister has two beautiful children, the oldest of which stood up and took care of his 16 year old self and 12 year old sister all night while their mum was in hospital.
Our lifelong friend, who happened to be going for a cuppa with my sister and instead ended up spending the entire night in a hospital with her, sleeping on a settee.
The kids nana who went to their house at 7am this morning and got them ready and off to school.
My dad who went straight up to the hospital so she wasn't alone then drove back to get my niece from school and spent the day and night with her.
My brothers for taking mum out for lunch before she had to be admitted. One brother, for sitting with mum for hours until my stepdad got there. My other brother for taking food, because being vegetarian and gluten free sucks! For having me to chill at his place while our sister was in surgery, even though he wanted to go to bed.
My little sister for offering to take my shift at the hospital despite feeling under the weather herself. My husband for doing the nighttime routine so I could be with my sister, even though he is supposed to be packing for a once-in-a-lifetime holiday to Tahiti tomorrow.
To all the people texting us and messaging me, keeping our family in your thoughts.
To my best friend for making me a mixed CD years ago that resurfaced tonight and provided me with the good tunes of Snoop, Goldginger, Cat Stevens, Dre and Westside Connection while I drove and waited.

Imagine not having all these people to put their hands up and step up without being asked, and doing it without complaint. My world is full of love and I appreciate it every single day, today even more so.

I started writing this post as I waited in the hospital. I am now home, in my pj's, cuppa tea in hand. My beautiful little family are obliviously snoring their heads off while I reflect on how fortunate we really are.

We have love. We may not all have our health right now, but we have love. And no matter what happens, that love is strong enough to carry us through.

Sweet dreams my family - all of you.

See you when you wake up after surgery Mum. I love you xo