Day 39/40

Everyone we have met here so far now have a very special place in our hearts.
It doesn't matter whether old or young or where they are from. Or what their story is.
They have been special, in their own way, with their unique Fathers, Mothers or children. They are on their own journey, like ours. But only different.
When you are on the cancer journey, you are good people. Everything you do is about being good. Somehow if you are good, well behaved, kind and caring, you will get better results. That doesn't happen. Cancer doesn't assess you before moving in. Cancer doesn't care about age, about colour, religion or creed. Cancer just comes.
This bad thing has happened to you but you don't deserve it, no one does.
You would not choose most of these people here as your friends. There is nothing that you really, outside of this forced bubble, have in common. But you share something, something that no one else could ever imagine, unless you are in the thick of it, on this hateful journey.
On the whole you conform, as much as you can anyway, and on the whole you meet people that are truly amazing.
Some of those you know will be life long friends and others will be there. In your heart. Forever.
But wherever you are and whatever you do, there are always THOSE people. You are not sure about them, or they are just truly crackers!
On this journey though you make allowances.
Who would not be a little bit barmy, knowing their child is sick and watching them go through such a harrowing ordeal?
Then there are just true "no no" people.
That is my term for anything or anyone who is just a little .... No no!!
Although I write about it, I don't give the "no nos" any justice because it is almost incomprehensible.
Is it because they are scared?
Is it because they themselves are unwell?
Is it because they have a different mission?
I wish I could tell you! All I can say is "no no."
Yesterday's new friends turned out to be today's friends too. Purely because of the times that we had been given for proton. Another late evening appointment.
When we arrived, it was normal. Ben scanned his badge and waited. The therapist both collects and returns your children. For this you are grateful. You adore the therapists. The psychology allows nothing else. They take your child and then they return them. They are ok. They walk in and they walk out.
But THAT therapist burnt your child. And then they returned them. Just as if nothing had ever happened. You are truly grateful. Why wouldn't you be grateful?
You are though, very grateful. You are, because their technical expertise, cures your child. Doesn't it?
The proton time you are allocated does determine your experience. If you get early mornings then you meet the work crew. These are those who nip in for proton before work. One of our new friends always gets this slot though. I reckon it it because her mum looks good in the morning!
The lunchtime slot means you meet the dauderlers. They haven't anything to do. They hang around after their morning slot or arrive early for their afternoon slot. They like it at the proton centre. They belong.
Mid afternoon brings the families. This is the best slot of all. This is the normal, family orientated slot. The siblings who are not having proton play in the children's room. The adults who are desperate to demonstrate how well their child is, drink tea. We are British after all!!
Then there is the late slot. Anything up to midnight. We have not been that late yet but we are getting later.
The experts get late ones, the old hands. That is what Ben is now, after all he has only 7 more sessions to go.
You wait all day if you get this slot. You can't go far as sometimes they call you in early. If the weather is good you can relax by the pool. If it isn't then you ......wait.
I hate the late night slots. This week in particular, they have been hard. Ben seems to lack motivation and determination now and when we arrive there is none of his new friends, none of our proper new friends. Just the "no nos."
The latest two families of no nos don't seem to get it. They behave in ways that are just not right. But who am I to judge?
One man could not get over the fact that Ben is bald. He asked him why he had no hair. Is he for real? The kid is having chemo. I didn't need to step in though as Ben just dealt with it. The way Ben does. He rolled his eyes and he walked away. The man continued to talk at me. Every other word started with F. He was loud. He was brash. But most of all he just didn't get it. He couldn't comprehend why so many people at proton looked unwell. They are having cancer treatment for crying out loud!
He believed that your fate is written in the stars. Oh my flipping goodness! Can you believe his child is having proton too?
Another family were hanging out at the beach all day. The mum, her cousin and her young daughter who is having proton. They turned up to proton completely drunk (the mum and the cousin). Now don't get me wrong, I am not judging the drinking thing. That would be slightly hypocritical given that my middle name is Chardonnay and has been for a number of years! But to drive 30 minutes to proton, after a day of boozing at the beach. Surely that is a no no?
So you meet folks who cope differently, who are just different.
Ben seems defeated today. He is refusing to swallow at all due to his pain. The Doctor had described it as the worst sore throat that you could ever imagine. I can't imagine it.
He is now on morphine now and a full feeding plan. It is tough now. It is very tough.
I must administer at least five feeds ,of 250 mls per day, as well as over 800 mls of water. This is through his peg. I can only run his feed at 150 mls per hour as he feels sick if it goes any faster. So with a total volume of 1800 mls needing to be administered at 150 mls per hour, that is 12 hours of feeding! (At least I think it is !).
We still have to get to hospital appointments and proton and we still have to live. We still need a life, we still have princess Chloe! My mission is to work out how to do this feeding thing in a more efficient way.
I am not alone. Lots of the other children need feeds. I can share my issues. That helps.
I wish Ben would help himself though. Does that sound cruel? I don't mean to be cruel, I just want him to be ok. I am managing to keep the outside of his neck under control. I give him all his medications, I give him his feeds. I monitor his toilet situation and administer things to make him go, and things to make him stop. I deliver aromatherapy techniques. I wash him, do his mouth care and his dressings. All I need him to do is to try to swallow. I can't do that for him.
I can't let him give up this easily.
As soon as the pain started, he has just stopped.
He carries a spittoon with him. He refuses the mouthwashes that he needs. He will not help himself. He is low in mood.
There does come a time when you hit the wall during this journey. You just keep getting dealt more and more. You can't deal with anymore. You get tired. Ben is tired. He is physically and emotionally drained. He is anxious and he is angry.
I would be angry too, wouldn't you?
Tomorrow is a new day.
Tomorrow is a day for motivation and uplifting. I will think of a plan. I always come up with a plan.
Chloe does make us all chuckle though when things get bad. Today she has "told" on Ben hundreds of times. You see, we teach our children not to spit. It is rude, it is bad manners. So every five minutes she tell me that Ben is being disgusting! She tells Ben off. He does laugh at her motherly bossiness!
It must be strange though for her. She can't possibly get it. Not really. Not properly.
Ben didn't join us at the table for our evening meal. I am not going to make him do that. I can't make him sit and watch us eat when he can't even swallow his own saliva.
Chloe asked me why Ben wasn't at the table and so I explained. As she tucked into her salmon, exclaiming yum at every mouthful at the top of her voice, I could see her thinking.
She finished her meal. She told me it was lovely. Ben would have liked that she told me and then she said it. She said that I needed to help Ben, if only I could.
It is hard to think that soon proton will be complete. He will have done it. But we know we have some tough times ahead over the next few weeks. The saving grace is that his blood counts remain great and as yet he has only lost 1lb. Pretty amazing really. He will get through this, we all will.
The time here is really flying by and it is difficult knowing that there is so much we want to do or see while here. We won't be able to, though, I don't think. I just don't think Ben can do it anymore.
It is always harder to blog when the news isn't great. Friends have messaged to check we are coping. And we are. We really really are.
As I have always said, this is a journey and around each corner there is something new. You just have to manage it, to deal with it in the way only you know how. We are being strong. We will get to the end if this and then life will resume its natural course. One day.
On a very sad note, I have no Jacobs cream crackers or wine tonight. Slightly depressing really. My Jacobs cream cracker friend is in hospital as it is her boy's chemo week. She has a lot going on, I can hardly ask her for more crackers! Can I?
Our late appointments mean it is too late for wine when we get back so I suppose that is one little bonus. Not for ones psychological well being but I suppose for the liver at least!
So 7 more protons to go. 21 completed. The boy has done great. He really has. We all have.
So for tonight, sweet dreams.
All our love - the Carters xxxxx

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