Day 21. Reposted as yesterday's irritated my perfectionism!

Calories Dean -6450
Calories mum- who knows
Calories Chloe-220000000
Calories Ben - 350 ( at most)

We are in to week 2 now of proton. He has completed number 5 out of 28 and already the side effects are upon us. His skin pigment is changing around his neck and his throat is completely dry. He is complaining (wrong word - telling us) about symptoms that sound like reflux or heartburn. It is not horrendous but if this is number 5, number 28 is going to be very tough. I know what it will be like. I have nursed the most hideous radiation burns on patients before. I am not going to tell you about it though. Not yet. It may not happen.
I know it will though. He is thin ( he was always thin) but he looks thinner. He is frail. He is sad. BUT - his eyes are bright. They are so beautiful although they tell such a story. A story that no one and especially no child should ever have to tell. There are only eyes now. There are no eyelashes or eyebrows. The chemo has seen to that. But that must be good? It is killing the cells? That's what we need it to do?
The cancer journey screws your emotions. You don't have time to recover from one thought or feeling before something else is upon you. We go from almost ecstatic to exhausted, from anxious to confident, from losing to winning. It is a real turbulent ride and you have to hold on very very tight to live through it.
Our emotional state is scarred and will be forever. When we come home and you tell me something hilarious please do not judge me when I cry. When you tell me something tragic, please do not judge me if I laugh. My emotions are screwed. Our emotions are screwed.
I still function, I still show normal emotion though. I still have Princess Chloe. When I glance in the rear view mirror of the car to see Chloe applying deodorant (roll on) that she has secretly lifted from my bathroom, to her lips. Why? Because she needs the lip balm as her lips are dry!!! I scream like an animal in pain. My emotions are fine, and they work well under certain circumstances !

Week 2 of proton is different. The "group" that were here last week have almost gone. They were a family.
I have changed.
Last week I had to leave twice to cry, I moved on. I joined the craft table with Chloe and made bracelets whilst Ben had treatment. I became part of it. I am now part of the proton family. We are new to this. We have commonality. Do I like it? Did I choose it? Most definitely not. Is it ok?.... It was pleasant. Even Dean chatted to a stranger. That is not his thing but we need new company. We need to share our thoughts and our feelings, I think. My mum sits with us and absorbs herself in her book. I know she is not reading the words. Well everyone does. It is upside down! But she feels it too. She worships our little boy. Her Grandson and her " little friend"
Now I am part of a proton family means I can listen and hear other stories. We are lucky! Everyone has a different journey, I have said this before. We are lucky!
The 24 year old on his own. His family can not afford to come here. They must work. We are lucky!
The lady with a stick who cannot drive. The only place she has gone to in 5 weeks is proton. She has stayed in the apartment for 5 flipping weeks. We are lucky!
The beautiful 14 year old girl with her mummy. 7 months of chemo and now 39 proton sessions. We are lucky!
The lady that drove 2 of her children 20 hours so her daughter could have proton whilst her husband and other child remain at home. They are alone for 3 months. We are lucky!
So everyone has a story and everyone tells it and manages it differently. Even our friends and family manage it differently. We are lucky!
Some of the comments that people have made will make you shudder. But I listened to the proton families and they were sympathetic. How could anyone know, really know?
The stories these guys told about reactions to having proton or being unwell will shock you. I had to have a large vino to cope!

1) I am going to leave work for 2 months. I have cancer and am going to have proton therapy.

Lucky you! I could do with proton. I need some time off work.

2) Proton is not available in the uk so I must go to the U.S for 3 months.

How lovely. So Jealous!

3) We have been given some tickets to magic kingdom. They were complimentary.

You are so lucky being bald, you get everything !

My advice - be careful what you wish for.

This of course does not apply to my wonderful and brilliant network of friends and family. You know who you are and you know we love and miss you every day xx

We have not just done Proton and I do want to ensure that I portray a balanced view. There are a number of reasons for this but importantly there are other families on there way here and this is not to scare anyone.

The care here is amazing. It is more laid back as I have said before but the priorities are in the right place. Ben needed the Emergency Room (A&E) last night. He had a temp.
I called executive cabs, who are assigned to the protonited! They came, we got dropped off.
Within seconds and before any bloods etc Ben was given Iv antibiotics. I did question. They told me time was of the essence and even if he was ok it was no harm. They followed their protocol and we were home by 6am.
Ben is ok. All is ok.

Mum going home on Monday. That is going to be very tough. She has been Ben's best friend and Chloe and Dean's spa partner. She has been my Mum! Xx
Mum and I have a great relationship but we love a good old "put the world to rights" row.
This hasn't happened.
She has been amazing. She has been our rock. We love you.
I must tell you though she has some funny ideas! She doesn't wear glasses as she can see. (Silly optician)
She saw someone go to the gym. She doesn't know why. Everyone she knows who are healthy die!
They don't drive on the correct side of the road here!

Anyway mum is mum. That, I hope, is what Ben says about me. Ben has to sleep in Grandmas bed whilst she is here. Guess what? I have also been sneaking in too.!!!
A couple of other things too. We visited St. Augustine's. We went to the seafood festival. There wasn't much seafood and limited festival so that was that. We did meet a cohort of the US military. They were amazing and I will share a great photo.

So lots going on. My Bridget Jones entry, although slightly exaggerated does have a point. Whilst we sit here Ben is having a feed through a tube into his tummy. I sit here each night until 3am as I have to do it secretly.

Guys. Please never secretly feed me! I have enough going on xx

From the carters we love you and miss you each day xxx



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