Day 23

Yesterday was a good day. We didn't do a great deal. If not doing a great deal is Proton and moving? But it went smoothly. I was going to blog last night but somehow it didn't feel right to tell you that we were doing well. Not when my new friend felt like I had a week before. Not when her little girl looked so scared and so sad. It didn't feel right...to feel right. Does that make any sense?

The madness of living here and going for daily proton amazes me every day. It still feels like we are living in someone else's life. Like we are peering in from the outside seeing what is going on. It still remains surreal.
The good news is that Ben looks and feels great. Despite losing another kilo he remains a champion. His cheeky humour shines when he feels well. It brightens up our often very dark world.
Moving was actually quite fun. It was a bit like turning up on holiday. We were wanting to get unpacked. We wanted to explore our new surroundings. We wanted to have a bit of new stimulation. We did laugh (a bit) and we also stressed ( a bit) but that is normal. We felt normal. We were a little family going on holiday. We even had the bonus of the MOTHER!! She liked the old place better. It was quieter. She liked the old bathroom. It was cleaner. She liked the layout of the old place better. She liked the newness of the old place better. Flipping heck! So you like this new place then. Well of course! Flipping , flipping heck?

Today was a really quite irritating day. Proton scheduled for 4pm with a Dr Dreamy visit in at 330pm. Ben has even started to call him Dr Delicious! And yes he is very very yummy! It is the coolness. It is the clean look and the knowledge. It is the fact that he and his team are making Ben better. He could be Dr disgusting for all I care as long as Ben gets well. Being dreamy and delicious adds an extra.... Something...... Hum...,.
Apologies, I went off track then! No idea why?!!
So it was frustrating having a 4 pm appointment. They are very lovely and bonkers at proton but there is always a delay. We were there AGAIN for nearly 3 hours. There is always some delay. Maybe that is meant to be though. Maybe that is what happens to make you interact and to make you talk with others who share your concerns and fears and to enable you to help in any way you can.
That is why I didn't blog yesterday. I had someone else's story in my head. I wanted to share it but it wasn't and isn't mine to share. What I can tell you though is I met a beautiful lady. She has 3 children and her 6 year old is having proton. She is adorable. They drove from Canada to be here. The husband and Daddy and siblings remain at home to try and have a normal going on. There is nothing normal about this journey.
She was cradling her littlest when I spotted her. I noticed her because she was dinky and quiet. I noticed her because she looked so very very sad.
I noticed her because that was me last week. Clearly not the dinky and quiet but very definitely the sad. Her lovely eyes were glazed and you could see the visible strain of not falling into a heap of uncontrollable tears. But you could see an inner strength that she was finding and will find to guide her precious child to the end of this cruel and hated journey.
It's not all bad though, the journey. You use it. You bleed it. You sap everything you can from it. You have to.
It sounds weird but.... We are living in America!! When I finished university that was me. Straight into a job, no frills, no gap year. So this is my gap year! Flipping wicked!

As mums departure gets nearer Ben gets so chatty. He is trying to convince her to stay. He is so
very clever and mature that I could not resist his advances. "Grandma come on? You are the only one here that I have fun with!"
She cannot deal with that. She wants to stay.
We think she is settled too as we hear no bowel stories! Or maybe she has read this??? Who knows !

Dean continues to amaze me. He is starting to talk to protonites. He met a guy from HERTFORDSHIRE earlier. Dean is the man! When we get out of the car we do the proton bang! That isn't sexual by the way!! Basically we look at each other, say, we are here for proton. We do a stupid jump where we clash chests. Ben ignores us. We think it is funny! Ben does not!!
I have prepared a bit of a slide show of the journey so far. I keep trying to share it with you but I cry. My tears are so big that I can't see to upload it.
I will do it at some point when I am less busy!! I jest but I am busy. If I am not bathing someone I am doing a dressing or a feed. Ben is about 48 hours away from not being able to eat anything. I am trying to maintain his nutrition but it is tough.
There are only 2 options on our journey ! You live or you die. Maybe there are more? You cope or you don't?
I am, we are, the ones that live and cope.

Let me tell you about the bells. The day you finish your last treatment you walk out and you ring this massive bell. It is called the "aub chimes". They were an idea from a previous protonite.
My goose bumps were like golf balls when I watched this young lady ring her bell yesterday and everyone cheered. He journey was over. She had done it.
7 out of 28 done. Ben will be ringing that bell very soon. They call it the graduation. Ben you are the bravest boy I have known and you will graduate very very soon.

I am a cancer nurse and I specialised in head and neck cancers. What I didn't expect was that one day I would be nursing my own.
We are all the same as parents, we have to do our logical best. The nursing background helps but it is the unconditional love that you have for child that drives you on.

Ben is made of something special, he is so hard and so determined.
There is not a choice. This has to work. It will work and each day it is making him sicker for the best. He will win this.
You know that too..don't you?

I have developed a new admiration for stay at home mummy's. It isn't for me! It is too hard! I want to go to work for a rest. It / they go on and on. Endlessly calling me, pawing at me, needing constant stimulation. I need some energy. I want to curl into a ball and sleep for a week. I need to recuperate. I need some time to reflect and to think. I need to plan the next step. Or do I? There is little point in a plan as the plan is dictated for us. We are in the hands of others who make our plan. We are not in control of this. Maybe that's what makes it so scary. I can't control what happens. It is not our fault. It isn't anyone's fault. It has just happened.

We are lucky to have this opportunity. Ben would now be having conventional radiotherapy if we were at home. He would have been dragged on 2 trains there. Dragged on 2 trains back and deposited at school when he was well enough. Here at least we have the sunshine and the pleasure of time without distraction to devote everything we have to getting Ben through this.

We are very much looking forward to visiting magic kingdom this weekend. Princess Elsa will keep princess Chloe happy for ten minutes at least. She has her costume ready. She is so excited! If I hear another rendition of Let it Go again I am going to go mad! I have a plan though for this weekend. I am going to pretend to get locked in a toilet for 2 hours for some peace and quiet. If that doesn't work then I will opt for a disguise. "Thirty something year old wife and mother last seen exiting magic kingdom dressed as goofy. Please call 911 with any details!!!"

Must dash now as 101 things to do before the next proton session later.
Things to do list:
1) find some wine
2) remember to take ID to the store to ensure wine is handed over
3) ensure wine chiller is at the correct temperature so that wine tastes amazing
5) keep checking watch to see when wine o'clock is upon us
6) read a bit of my book whilst thinking about wine
7) take Chloe in the pool. Imagine the water is a huge pool of wine.
8) go to proton and hope that the coffee machine has been upgraded to wine machine
9) check clock again to endure that wine o'clock isn't missed
10) drink wine

From the Carters have a good day!! Be happy xx
Sent from my iPhonejourney !

Sent from my iPhone