It'll never happen to me

I'm can't quite believe I am writing this post. When I started this I thought it would be useful to open up so other people can use it to help them understand or get through a similarly rough time. I planned to write about moving forward with our grief and loss and also to tell you all the story of everything we went through as a family. It seems this has now changed.

Last week I wrote about bad days and then followed that up with a post about good days and how not all of our days are bad. Most of them are good, we manage okay and we get through them fine. I wrote about how we no longer have to suffer the anxiety of an unknown future. We no longer have to worry about scans, head aches, chemo, side effects, clinic visits etc and how there was some small comfort in that.

Well maybe writing that was a mistake as it seems lady luck or whatever the exact opposite of that is hasn't quite finished with us yet. The last few days have been particularly rough. We've really struggled in all honesty.

My sister called at the weekend as my niece had a bulging left eye. She was taken to ER or AnE for the English translation but unfortunately for whatever reason she was sent away as nothing was wrong, honestly, its incredible. She clearly had a problem. We talked that evening and I told her to try giving her some Benadryl and to see how she was in the morning. If it was still there take her back. I am an absolute firm believer in a Mothers intuition as a diagnostic tool. So I told her if she feels its not right do not let them send you away again. I'm telling you, it's a thing, Mum's just know. Anyway, i'm sure you know where this is going right?

The bulging eye was obliviously still there and they gave her a CT and found a lesion or growth at the back of her eye. This progressed to an MRI and shes now been diagnosed with the Cancer Rhabdomyosarcoma.

I mean, what the funk? How is it possible that two lovely little girls from the same family have two different cancers at roughly the same age? There is no real history of cancer in the family and I'm hoping this is not genetics related and we are just being bashed again with the unlucky stick. I've already reached out to Hannah's Oncologist to check for any know links and its something we are going to push to check Nora - she was fabulous as always.

Suffice to say it's all a bit of a shock. I had a bit of a screaming match earlier and I could feel myself losing control. It felt surprisingly good to scream out but I was very quickly losing control of my ability to keep it together. Kate snapped me out of it and pointed out my two year old dropping F bombs like Daddy just had(oops). Maybe that's a sign of my current mental state and that we have a long way to go. Something for me to be aware of and to reflect on anyway. I haven't really experienced anger during any of our time with Cancer. Now though, now I am angry. Now I could scream and shout and explode. But who do you explode to? That's the thing with Cancer. There is nothing to fight. At least not physically. It's just this emotional turmoil, or rather torture, of clinging onto what ever hope you can grasp at and holding everything together.

Well, 'fuck you Cancer' and 'fuck you world'. This shit is not fair.

Obviously everyone is a bit of a mess. We are in shock and still raw from Hannah. We were slowly starting to piece our lives back together, I wanted to use this blog to demonstrate that. I wanted to use the defiance Hannah taught us, to keep pushing and living each day, to show how to not let Cancer win. Well, now i'm wondering how we are going to find the capacity to go again. All those things I said were done last week are now back and we have to sit on a periphery and watch from the sidelines now. How am I going to walk on an kids Oncology ward and hold it together. How am I going to deal with other families we will likely meet. "This is our Niece, we lost our Daughter to Cancer in March." How am I going to cope watching my sister go through all of this, my parents too have to step through all of this again knowing exactly what the next 12 months and more has in store.

And then I think of the most important thing. This poor little girl. She has all of this to go through and yet she's old enough to know that Cancer is what sent her big cousin to heaven. How must she feel? What must be going on in her little head? These kids are so resilient, they will humble you many, many, many times but it's wrong to think this is easy for them. As grown ups you have to remember they are the most important thing. Take your time to get on top of your emotions and once there you just have to keep going, one foot in front of the other, day after day. There is literally no other choice. No matter how many times someone tells you how strong you are and every single time you just want to scream and break in front of them. But, you don't. You chin up, you tuck it in, and you move on. That's what everyone has to do again because that is what Alyssa needs.

Once the shock and anger has settled it will be fuss over Alyssa mode. Talk to her and allow her to come to terms with how much her life is going to change and let her know that she is won't be alone.

I have said this before and I will say it again. Childhood cancer is NOT that rare. It'll never happen to me etc. Well, that's what we have said twice now. This has got to stop.

I looked at the treatment and its all very similar drugs to Hannah's chemo and it's the same drugs that have been used for years. Two different cancers, the same god damn poisonous drugs. Its time to put some serious money into this and get on top of it. There's more than enough money for bombs after all.

Anyway, my sister will be fine. My lovely Niece will get through all she has to. We are heading home at the weekend to support. I guess we are somewhat experienced at this now so we want to be there to help with questions and honestly just to reinforce that you never walk alone and above all else you keep hope in your heart.

Here we are again on another Childhood Cancer journey.

I'll keep you all posted.