Day 49/50

We have officially had a weekend away.
No blood tests.
No chemotherapy.
No proton.
Away from our two bedroomed apartment and away from Jacksonville. Our safety net. Our saviour.
Our home over the last 8 weeks.
We have had space, no time constraints or pressures. We have had fun. We have rested.
Leaving Jacksonville for here, Orlando, was a bit of a mission. We have a huge SUV (check me out!) but still we were full. Full of machines, equipment, medication and feeds. Everything to remember. Nothing could be forgotten. It was like packing when you have a newborn, only more challenging. Nappies you can get anywhere, morphine is slightly more tricky to find!
But, I remembered it.
I remembered everything.
Except for my clothes.
Everything I needed is still hanging up in my closet! (Yep, fully American now!!)
Now, that may have bothered me 6 months ago. Today, I couldn't care less. I actually found it quite funny!
I was to spend my time away wearing only a yellow swimming costume, Ben's flip flops and a suction machine!
Who cares?
Well I didn't.
Not until the phone call came from some lovely friends who are here on holiday.
They had arranged such a special evening for Ben.
We were to go to Universal Studios where he would meet Jessie J and have VIP tickets to go backstage. We would get to watch the concert. We could use the park.
Amazing, but Oh my flipping goodness!
Yellow swimming costume was not going to work for such an event.
If you see any of the great photos that have been posted, please do not judge me!
No, I didn't go in the swimming costume!
My outfit was a quick pick up from a local supermarket, just to get by.
Now when you are a size 10, cheap and nasty or even a bin liner looks good. But at a size, slightly larger than a ten, but not that much larger in American sizes!! does not make you look your best.
It was fine though, I was covered up at least!
Ben's mood went up and down. He went from feeling rubbish to nervous, to really excited.
He does that a lot now. His personality changes within minutes, seconds even.
I don't know why. I will work it out though. I generally do. It will take me some time though.
We weren't sure we would make it, as he wasn't that great really.
He was desperate though. Desperate to see his friends.
Totally consumed with exhaustion. Pale and fed up though.
It was such a shame as the previous day he had been brilliant. You can never predict this journey you see, the cruel twists and turns. It is always there. Trying to catch you off guard. Trying to beat you. It won't though. It won't beat Ben. It won't beat us.
The thought of seeing his school friends was both exciting and scary.
He did it! He dressed the part, following a trip to the Converse outlet, and for the most, he was just a normal kid.
He loved it.
Meeting Jessie J.
Having her dedicate a song to him. To call him an inspiration. It was a special moment and one we won't forget.
To our lovely friends. We thank you.
Ben got tired though. He got a bit weepy. His pain raised its head. But he did well, very well.
It is strange to see people who you have known for a while but who haven't seen Ben for some time.
I wanted him to look normal. I wanted them to see him well.
I did seek reassurance, I know I did.
I asked, outright. How do you think he looks?
Better than before we came, I was told, although counteracted with the fact that they had not really seen much of him. But he looked better, my friend thought. He actually looked better.
That was good enough for me.
You see, cancer strips your life and soul away. It steals your energy, your desire and your motivation. It's hold scares you and consumes you.
But you have to battle through. You can't let it take you. You can't let it sap everything you are and want to be.
What would be the point in the fight if you just gave in when it got tough? There wouldn't be a point and you have to keep telling yourself that.
Mind over matter
Mind over matter.
It was a lovely sight, last night, when Ben fell asleep at the table. It was lovely, as the other children did the same.
It looked normal. 4 tired children. Asleep in their food!
But when there is just one, just yours that has fallen asleep coupled with the tell telling sign of baldness and weakness, people look. People stare. People pity you.
Not last night though.
They were all the same.
Four tired kids. It was great. It was normal!
So yet another incredible memory has been created on this journey. And more people playing and being a part of it. For just a minute, feeling it. Or some of it anyway.
Our countdown to coming home has begun.
For the first time we have moved away from saying that we have been here for so many weeks now to, we have only 2 weeks to go. Two weeks until we come home. Too our lives, to you.
Can you believe how fast it has gone? How the time has flown by?
It feels like the normal holiday countdown now, well almost.
You know, where each day flys' by, and you seem to loose hours, days or weeks even.
We are coming home. We are almost ready. We have no choice.
We have a final chemo hurdle to get through next week. That is it then for here. Treatment in the US complete. We are done. We made it.
I would like to finish all of Ben's treatment here. I have told you that before. I want to bring him home well, finished. A fresh start.
We could. We could pay for it, for the rest of his treatment.
I have no idea how much it would cost. But we could try.
We won't.
He wants to come home.
He wants to move on.
Who would have ever imagined that this would be something that we would ever experience. Certainly not me.
Even at the first radiotherapy consultation that I went to, I thought it was some sort of strange wind up. Maybe I was imagining what I was being told because of a sort of stress like reaction.
I didn't even know he needed radiotherapy. No one had even mentioned it. It was benign, kind of? Wasn't it?
Well no. It was malignant. It is malignant. But that was ok. It hadn't spread. Why did he need radiotherapy?
That was where my head was then. I couldn't even contemplate conventional radiotherapy yet alone this. Proton? Seriously? What the heck?
I had only ever heard of one person having proton, and they were kidnapped to have it! I had never been interested in researching it. After all, I had given up cancer nursing! What an ironic twist life throws.
This wasn't real. Not in our world.
Being offered a treatment that doesn't even exist in the uk? Never was I ever thinking of this possibility.
Never to be sent to the US. It hadn't crossed my mind for even a second.
I have never ever wanted to visit here, America. I have always managed to find a suitable excuse when Dean has suggested it in the past.
Ben was too little.
We were trying for a baby.
I was pregnant.
We were trying for a baby.
I was pregnant.
We were trying for a baby.
I was pregnant.
We had just had a baby.
Chloe was too little.
I was too tired as Chloe was too little!
Chloe was too naughty.
Chloe is too naughty.
It was too far.
It was too expensive.
We were moving.
Let's wait until next year.
But I love it. I love Jacksonville. I could move to Jacksonville tomorrow.
Not to Orlando, but to Jacksonville, yes.
Have I been sucked in? Like the other families who say the same? Sucked in by the security? The care? The thought that actually your child is benefitting and getting well?
Maybe.
But I don't think so.
I have fallen in love with a beautiful and diverse city. With friendly, kind and inspiring people. With simplicity. With charm.
A place where you can do, see, feel and experience exactly what you want to.
But it isn't real. Not really. Is it?
Sunshine every day, nearly.
No work or school.
No post to open!
No nothing. Except for this.
Getting well, lovely places to recover. The ocean! (See, I told you. Get me!).
It isn't real. It is just a real part of our long journey. The best is yet to come. Isn't it?
My Mother and Father in law go home on Friday. If has gone very fast. They have been a great help and support. My father in law doesn't sit down. He is constantly looking for the next joke to be had or the next person to talk to. He loves it when you can't find a cork screw or the wifi goes down. Why?
So he can nip and find someone to ask, to tell them about it. To chat to. He loves putting the trash (bins!) out. You may bump into the bin man for a chat! He loves walking to the petrol garage, which is more like a supermarket. For a chat.
My mother in law goes with the flow. Easy going and patient. So flipping patient. I am sure that inside she really wants to scream, go crazy. Tell Chloe that there are no more flipping M and Ms. Tell My father in law to leave her alone as she doesn't want to go in the pool. Tell Dean.... well just tell Dean, and tell me. Tell me too.
Tell me that the answer will never be found at the bottom of a wine glass. She is right.
Mothers know best!
She will never say it though. She keeps it inside.
We all do. We all keep a lot inside these days.
Living together for this many weeks. No outlet. No escape. No anything except for this. It is tough. It is the hardest bit.
My identity has gone. I am Ben's mummy. Carer, nurse, worrier.
I am no longer selfish or too busy. He is my responsibility. I can, I will make him better.
I am Chloe's mummy. I listen and ultimately give in to her prolonged moaning. I can make up games and I can try to occupy her. I am better than any party planner!
I am Dean's wife. I listen to him, I listen to him again. I listen some more, I carry on listening.
This is me right now.
Prepare yourselves for the onslaught! I have not been out. Not out out anyway. I haven't had a chat with you. I haven't cried.
Prepare yourselves. She is coming home! We are coming home!
Since finishing proton, I miss our new friends. I miss making new friends. Each day was different. Each day was special.
I wonder what people are doing now that they have rung the bell. I wonder how our very poorly friend is that hadn't eaten for 10 days and looked so unwell. I will go in to see her next week. I need to know she is ok.
How are they all?
How are they feeling?
I can't ask them any more. Not like I did. It feels strange.
We miss them.
So really we have been swept along on this journey. We have experienced exactly the same emotions that the other protonites have.
What seemed odd at week one, is now the normal for us.
And we have done, just as the others have. We have created our own memories and had our own special journey.
It will never be forgotten. Not ever.
So, I came here the person I was and I leave soon, the person I am.
I haven't made as many changes as I planned.
I was coming home skinny. I am fatter than I have ever been.
All my vices were to be banished. They are worse! (But secret!).
I was coming home fit. I am the oopposite.
I was coming home sad.
I am the opposite.
I am thankful. Happy. Encouraged.
I am strong.
I have built a strength over these last two months that no one will ever believe.
What doesn't kill you makes you stronger?
My new friend, the one I chatted to on an evening, before she went home. She left an important impression.
She has 3 children. She is in a relationship but split from her kids daddy. She suffers anxiety. She calls it anxiety Annie.
I won't tell her story. It is hers to tell.
But I leave you with a thought.
Severe anxiety.
Taking your eldest child for proton. Because you have to.
Leaving you youngest children behind. Because you have to.
Doing this journey to get your daughter well.
Because you have to.
Knowing there are other big issues to cope with when you get home.
But you have to.
What a woman? What a person?
Her daughter will do well, she will because she is strong. She is strong because her mummy is too.
I think about those guys every day, often.
Anxiety Annie? It is really your time to leave now.
I didn't even know them, not really.
Doesn't it put things into perspective?
My Jacobs cream cracker friend is having fun. Always doing great stuff and seeing the sights.
She struggles like me. Her son won't/can't eat. We share the anxiety. Our boys are thin. They need to have nourishment to be well. That is our control.
That is our boys control too though and that is a problem. They aren't anorexic in the physiological term. But they control it. They are in charge.
That is unless they have a tube of course!!
And our boys do. We are lucky!
In a different place, we would be out,having fun. Carefree.
But not now.
That wasn't why we met.
We met for a very special reason.
We feel it.
We understand it.
So we move on, again. Another part of the journey complete.
Tonight/this morning I /we leave you.
Be happy. Be grateful. Don't be scared.
You will get there. We all will.
Whatever you are struggling with or fighting against, or for.
You are special.
We all are.
xx
From the Carters. Goodnight. Xx





Sent from my iPhone