Day 45/46

The journey continues, but it is nearing its end. Of this part anyway.
There have been moments of tears, moments of joy, of sheer frustration and of uncontrollable love and adoration.
The have been moments of solidarity and of surprise. Moments of unity and hilarity. And most of all moments of sheer gratitude that we have had this opportunity. To get Ben well. To have family time, albeit hard at times, and to enjoy such a beautiful and amazing place for so many weeks.
We have had good days, brilliant days, awful days and terrible days but we have got there, almost.
Ben completed number 26 out of his 28 protons tonight. He had his weekly Proton check. Not with Dr Dreamy but with his colleague, Dr Delightful. He was doin what ever it was he was doin ! in Denmark. And she was checking Ben, on his behalf.
She told us that his external radiotherapy reaction was amazing, considering that the throat is one of the hardest areas to treat and she definitely wanted us to keep doing what we are doing on that front.
She explained that his symptoms had more than likely peaked and that the fact that today he could swallow fluid was incredible.
She explained that she anticipated that in a week to two weeks time his sore throat and mucus build up would be reduced and that she would expect him to be eating again within the month.
Totally fantastic news, and the reassurance we all needed tonight.
It is impossible to assess any longer term damage at this point and she explained that there may be some future complications that may require speech and language input. She could not say whether he will ever not have a hoarse voice. But, he has a voice.
He has spent the majority of the last 6 months able only to whisper. We thought that was the best he may ever get. Now he sounds as if he has just a very sore throat. And he has.
He is on Fentanyl patches for pain as well as morphine and hydro codone as he requires it. I was administering pain relief every two hours last night. Hideous. ( note to sister! - I reckon I remember what it is like with a baby and sleep deprivation!!)
But that said, his strength and determination has got him to the end. Almost.
Tomorrow he graduates and makes a speech. You can guarantee that he looses his voice tonight and I get nominated!! It's the least I can do for him though.
He has treatment tomorrow at 10pm and then at 7am on Thursday. That is his last day.
He will ring the bell. The Aub chimes, which celebrate his completion of this part of the journey. People will clap. I will most definitely cry.
So positive news after a couple of tough days.
His fatigue is pretty bad now but he also ended up in the hospital yesterday with a high temperature. There seems to be no cause for concern. But every minute of every day is a cause for concern.
I lay awake watching and listening to his every strained breath last night. He developed a tracheal pull and stridor. Basically this is the technical terms for difficulty breathing due to his airway being in trouble.
It has happened before, when his tumour blocked his airway. This time though, it is different. It is the build up of mucus and inflammation caused by the treatment. He is loud. It is a snore, a wheeze and a gurgle all at the same time.
I have to tell myself he is ok. I have to try not to worry.
It is hard, so very hard.
I dread the nighttimes coming.
But they do. And we get through them.
Last night though was troubling. Each time I thought I had cracked it, either by changing his position or by suctioning him, the noise started again. At times it was confusing as I could hear it, but it didn't seem to be him.
The father in law! A few Bud lights later. Sounded like he had had 20 sessions of proton!! Poor Tina!
My mother and father in law had a guided tour of Ben's gantry last night. He was so proud to be showing them. It was really interesting and nothing like the first time I saw it when Ben was in a complete panic and mum and I were crying.
He was confident, knowledgeable and really chuffed to have his Nanny and Grandad with him for this part of his journey. We are too.
When I first met my father in law, some 15 years ago, I used to gasp in horror at some of his comments and jokes. He has his own way and he makes me die! I no longer gasp. I now know what is coming. I can predict it now. I know him too well.
He loves to chat to people and he makes some very funny jokes. Well, funny to us anyway. He is, what you would describe as, politically incorrect. Not in a rude or nasty way. Just in his way.
This made yesterday particularly funny when he decided to talk politics with an American couple by the pool. Gary talked about how he liked Obama. They told him he had ruined America and so he moved on.
To Donald Trump!
He explained that he thought he would be a great US president!
I have no idea if he was serious. But the lady explained to him " that she would rather vote for a monkey!"
He has now spent most of today looking for Trump flags to wave by the pool. Luckily he hasn't found one....yet.
It is all in jest, but he does bring humour to situations that need to be lightened. It is good to have him here.
My mother in law has always been a mummy mummy. Not like me. Much gentler. Much kinder. Much mummier!
Ben loves this. His every sentence starts with "can Nanny ...."
He wants her to cuddle him, watch TV with him, chill out with him. And she will. She would do what ever he asked. She is a calming influence now. She counteracts my harder approach. It is good to have her here.
They love it here too. You couldn't not. It is fantastic. I don't know how I will adapt to life as it was. But I will. I have no choice.
Today we visited St Augustine's. Absolutely beautiful. Old town and history, mixed with beach and marina, mixed with culture and vibe, mixed with fun. We will go back. We didn't do a great deal of the sights as Ben was too tired, but we will. I really wished that my mum was here today. There is so much she wanted to see and do, much more we have found that she would love.
Every part of this journey, and each day if different.
One day you can see and do a lot, and others you just have to wait. Wait until Ben can.
It is restrictive. But that is what it is. He is trying and doing do very much.
I never expected it at this point.
I am still struggling to believe we are home in less than three weeks. It is so very strange.
What do you expect when we return? Floridian beauties, all golden and fit? A family of emotional wrecks, all tired and gaunt? American accents and cute slang? Holiday blues that are so bad that they require immediate professional healthcare attention?
Or do you just expect us?
As we were?
Before all this started?
I don't know, but it will be none of the above or maybe it will be bits, all mixed together? But we won't be the same again. Ever.
But I don't want to be, the same.
I want to use my time on earth in a different way.
I want to count each breath as if it maybe my last. Because you don't know. You never know.
So, whilst we worry about leaving the toilet seat up, the floor being dirty or the grass being too long. We shouldn't. There is no need. There is no time.
Every part of our life is a journey and every path you take leads you to something new, somewhere new.
Everything you pass and see along the way becomes a memory and those memories need to be treasured.
We have created so many new and beautiful memories on this journey and they will never be forgotten, cherished forever.
When I started this blog, I did it hoping that Ben would take it from me and create his own. He couldn't. He had used every bit of his reserve to get to this point.
So I carried on. For him, for all of us. For me. I have always wondered though, when it will end, where it will end.
Do you just stop? Stop writing one day?
We are here, home, is that the end?
Ben is cured, is that the end?
I have never really known.
But, it is becoming clearer now, as I write, that this part of the journey and therefore this blog is coming to its natural ending.
It will end when it is time and there is no more to write.
I feel an emotional attachment though, to it, the blog. To you.
However, writing about my supermarket shopping, my day at work or my argument with my husband in three weeks time doesn't have the same appeal! To the reader and certainly not the writer!!
So we will see.
If there is a natural need and want to blog. Then....
If it naturally ceases.....then.
Each day I write, and each day you read, is a total pleasure. You help me through this and you make me smile.
I love including you and I hope you are and have enjoyed been included too.
So for tonight. I must paint my nails. After all it is graduation day tomorrow!
With love, as always. The Carters xxx


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