FW: Day 17/18

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From: jjcarter1979@outlook.com
To: jjcarter1979@outlook.com
Subject: Day 17/18
Date: Fri, 4 Mar 2016 02:24:13 +0000

"Laugh in the face of Cancer".  Isn't that what the campaign on the TV asks us to do?  "Laugh in the face of Cancer?"

I understand the campaign, of course I do and it seems that for those who have done it, who have lived it, breathed it and survived it, I can see how that must be possible.  You have won, they have won.  Even if you loose the fight in the end, you have won the battle.  You are free.  No more suffering and no more cancer.   But when you are still in its grasps and  when it has hold of you in an all consuming way and with a grip that is so tight, you cannot see how you could possibly get free.  But you will, Ben will.  It is and will continue to be a struggle and a struggle and battle for the rest of our lives.  Every corner you turn, we turn, every future sore throat or sniffle will always come with that question, that dreaded question.  Is it back?  You can ask me how to cope with this or how to go on with life in a normal way with the deepest and darkest cloud hanging over us or merely hanging around and the answer if that you do and you will.  Life will undoubtedly be changed forever but that is not always a bad thing.  I remember days when I had chances to do fantastic things and I chose not to.  Not for any other reason other than I could.  Now I will never take any opportunity for granted and I certainly won't be taking this for granted.

When I blogged previously, I talked about chemo being like childbirth and how we forget how bad it is or we wouldn't or couldn't go through it again.  That is true but so is the fact that you recover.  When you are in the grasp of the hideous symptoms that chemo brings with it you cannot imagine getting through it.  I am talking as an observer and a carer and for what ever I feel this is significantly worse for Ben.

The last few days have been hideous.  The vomiting has been so extreme that the noise and the retching have been unbearable to watch.  His retch so deep that it comes from his toes.  There is nothing else to vomit.  There has been nothing to eat or drink for days.  No medication works and the helplessness as a parent is horrendous.  It doesn't matter how confident you are as a parent or even as a nurse, when this is happening to your child you need help.  Really no one knows quite what to do. The symptoms are just extreme and he has to ride them out.  Not only ride them out but also be strapped into a mask that is fitted to the proton table wearing a gum shield and knowing the importance of staying still and knowing that actually if you vomit it is going to be a very unpleasant experience.  The fear has been uncontrollable.  He has shook and cried and gripped me like never before.  He has pleaded for it to stop and told us over and over that he wants it to stop.  But....this brave little boy has left the house each morning at 0545, sick bowl in his hand and hunched over like an old man.  He has got in the car and completed the 30 minute journey to the Proton Centre.  He has checked himself in, kept his manners always and has done it.  He has gone and had his proton on his own, delivered by Health care professionals whom he has never seen in his life and he has succeeded.  

He has ridden out the symptoms and started eating and drinking today.  He has laughed at Chloe, he has taken the mickey out of Dean and he has shouted at me!  All good signs.  So this evening Ben is "laughing in the face of cancer".  He is winning, he will win.

Today we have relaxed outside by the pool.  Ben and I played table tennis for a bit and Chloe walked around basically naked with just a pair of plastic high heels on, clunking around and making a nuisance of herself.  She announces to everyone she sees that her brother is poorly and if they take little or no notice she exclaims "look at his bald head, LOOK."  She is a number of things mostly beginning with an F.  Funny, fantastic, feisty, flirty, forgiving, fortunate and most of all a little ....!!

Joking aside though she is very hard work at times.  She has so much energy that it is crazy.  It is great having my mum with us.  At every moment of Chloe craziness my mum helpfully explains that "she is just like you used to be at that age!".  Well then tell me what to flipping do with her then if you are the master of crazy kids.  Don't sit there reading your book chuckling away advising that you know just how it feels as I used to drive you bonkers at that age!  DO SOMETHING!  

I jest but actually my Mum has been a great help.  You can always count on your mum to say the wrong thing and make you laugh.  She is also making a continuing habit of talking about her bowel habits.  This worries me as I am sure that that is a sign of getting older.  Everyone please be reassured.  She is as regular as clockwork out here.  She even mentioned that she might move here as the water is definitely better as she goes every day!  Give me flipping strength!  The kids adore having her here.  Chloe makes her do ballet each evening and Ben likes to have quiet chats with her explaining what has and is going on.  In some ways I think that this is quite therapeutic for him.

I have asked the Social Services Director if we can move apartments.  We do really like it here but there is so much building going on on the complex that I feel like I am at home.  It is bizarre that everywhere I go I end up on a building site.  It wouldn't be that bad if I didn't have to have a daily tutorial in building regulations or techniques from Dean.  We are hoping to move on March 9th to a new complex which has quite a lot of things on site.  Having a little park, a balcony etc will make things easier.  I don't want to sound fussy but when it is hot here (which it is getting) not being able to go outside is a bit of a nightmare.  We can go to the beach etc but when Ben is sick he really doesn't want to travel if he doesn't have to.  Dean thinks it will be good to move as he thinks a bit of variety will offer a bit of spice.  Well it will if you don't have to pack up three months of belongings and move them to another place.  I will keep you posted.  

We are trying to plan things around when we think Ben may be well.  This weekend we are going to a Seafood and Music festival in St Augustines which is about 30 minutes away. We haven't been yet but we are told it is really lovely.  Ben is looking forward to it and as it isn't too far if things get tough we can head back.   The following week we have early treatment each day so that means proton at 0645am.  We are then going to head off to Orlando on Friday after treatment and stay for the weekend.  We have tickets for Magic Kingdom, so this one is for Chloe.  Just need to get to the Mall this week and find an Elsa costume and she will be in her element.  We are hoping for a fab time and the weather is looking really good so fingers crossed the little man is in good spirits.

I don't think it will be long before Ben becomes very symptomatic from his Proton.  He has had three sessions and already has a very dry throat.  Because he hasn't been eating or drinking this last few days I have been using his peg and actually hanging bottles of ensure that I bought from the chemist.  It took a bit of time the first day to get it but then it all came flooding back and I am now confident that I can maintain his nutrition should that be necessary.  It is amazing what manuals you can download!  You would think that I should know just what to do but I haven't hung a peg feed for nearly 10 years and never on a child.  Still it is actually more common sense that anything else.

Going to the Proton centre a few times now you realise just how everybody's journey is so different.  The early slots have been predominately the working age group.  Basically they rock up, have proton and go to work.  Everyone really does look well.  Then there are the kids.  They tend to look worse as the majority are having chemo or have had chemo so some have no hair and others are really pale.  There are some though that look amazing and you would never tell that they were unwell.  Nor would you tell that they had completed so many cycles of proton.  It really does make a difference where you have it and the dose I think.  The first day I went, I cried.  I tried not to but it was awful, the second day I went I cried, I tried not to but it was so awful.  Today I went there in my slippers, bed hair, PJs under my clothes and without cleaning my teeth.  I think this morning seeing me, everyone else cried!  Probably with laughter.  Everything is over the top.  You cannot just slip in and hide in a corner.  You walk through the big sliding doors and "HEEEYYYY MRS CARTER?  HOW YOU DOING THEEES FINE MORNIN MAM?"  

Flipping brilliant - what do you reckon?

"WEEEEEL THAT'S GREAT MAM!"

"HEEEEEEEYYYYY BENJIMANNNNN HOW YOU DOIN?"

As he pukes into his bowel - what do you reckon?

"OH BAYBEEE, FEEELINN A LITTLE GROGGY LITTLE DUDE?"

No he feels flipping brilliant - what do you reckon?

"YEEE ALLL LIKE THE EARLY SHIFT"

Well look at the state of us with our hair, breath and Pyjamas - what do you reckon?!!!

But we are now slowly becoming part of the elite Proton club.  Dean reckons that by the end of next week we will definitely get a high five!

This morning whilst waiting for Ben one of the patients got up and started playing "Somewhere Over the Rainbow" on the piano which is in the entry hall.  This was at 7am.  Not only that but then the rest of the patients clapped as if it was an organised performance.  It is a very surreal place.

The support from our friends and family continues each day and it is you guys that makes us laugh and keeps our spirits up.  There are also a number of complete strangers that have either read the blog or read the paper and have been in touch and again we thank you too.

Just so you know, not all that you read in the papers is true!  Sometimes journalists are good enough and care enough to hear your story and write what is correct, however for others they need something more, something juicy or incriminating.  There is nothing incriminating about our story.  We were and are for all intents and purposes a normal and hard working family.  Yes we are very fortunate in many ways and of course like the majority we have our struggles too.  We have been fortunate in the health care that the NHS has provided.  We were very well looked after at our local hospital, which was for a number of years very dear to my heart.  I had and still have some amazing friends and colleagues there.  We continue to be looked after by the team at GOSH and at UCL and now over here we have the American Health care system looking after us.  We have few complaints.  What is clear though is that in the UK, we have some of the best.  Yes, demand often exceeds capacity and lalala but we have experts that do what they know and what they can.  The US is very different.  There is not such a push on infection control and the staff have nail varnish on and jewellery.  I would have made a good nurse out here!  The facilities are no different to the NHS in many ways, however billing is so robust that you will not pass go without the means to pay should that be the route that you have to take.  I have met people here who feel that they have been failed by various specialists or hospitals.  We have not.  Ben was funded by the NHS to have this treatment and we remain thankful for this opportunity.  I do reckon I have paid for it ten times over though in taxes!

So nearly done for tonight, but on a final note.  I am being truthful in what I write.  I am telling our story.  No one should be compared or judged for their story as we are all different and are all fighting a different battle.  The blog is both therapeutic for me but also I hope gives you some insight should you wish to have it into our journey.  Why do I want to share it?  Well for many you will be lucky enough not to ever have had to experience it first hand and I hope for you it helps you know what your friends or family may be dealing with.  For others you may have gone through or be going through similar and I hope that you read this and don't feel alone in your battle.  

No journey will ever be the same.

From us goodnight xx