Day 18

A few milestones have been reached today.  Firstly and most importantly Ben is on the mend.  Each day he seems to get brighter after chemo.  The problem is that with each cycle he gets worse and takes longer to recover and then it is time to go again.  It must be horrific.  Your body full of poison.  But you get better!

 

I have a number of tips for you if you want to know whether your child is feeling better.  This is about any illness and not just cancer. 

1) Are they talking so fast that you are struggling to piece together what they are talking about?

2) Every time you look at them do they pull some very ridiculous grin?

3) Are they being rude?

5) Do they continually tell you they are starving?

6) If you do not do as asked within 10 seconds of being asked do they accuse you of having rubbish parenting skills?

7) Do they argue that black is white and vice versa?

8) Do they huff and puff at any suggestion you make?

9) Do they suddenly have a new and inner confidence that you never knew existed?

10) Are they a monumental pain in the backside?

If you answer yes to  the above, then your child is feeling better!

So today we had the 1530 slot for Proton.  It varies each day depending on the number of patients and whether they need anaesthetics for treatment.  When we arrived today it was different.  We knew what we were doing and Ben was not vomiting.  I no longer had the panic rising inside me that he may choke on the table or that horrendous pang of helplessness that I have had this week.  Today I just felt so proud and I felt part of something.  I am not quite sure what I felt part of exactly but it was definitely that we are in the getting better gang as oppose to the other.

He walked in, he said "see ya" and he came out.  He wished his therapist a good weekend, raised his hand and said "bye".  I actually thought at one point he would shout "see yorrrl layter dudes". 

We laughed a bit as we could see the marks that the mask had left imprinted on his skin and also as he had asked them to take a couple of pictures of him to scare his sister.!  He was amazing but slightly miffed with his therapist today.  In an attempt to help him relax and to pass the time she advised that he listened to music.  Instead of his choice, she played "Night Fever."  Now even when you think of the song Night fever you automatically start to move.  You start to do that ridiculous dance that we all know so well.  So imagine.  You must keep still for at least 35 minutes.  You must NOT move.  You cannot even blink and you have poxy Night Fever playing.  Well, those were his thoughts exactly.  "Mum?  My legs kept dancing!   I couldn't stop them they were just doing it!!"

Now I challenge you all.  Try it!!!

So Proton week 1 is over.  I have conquered the fear of the Proton centre.  I even sat at the crafts table today and made a bracelet with Chloe whilst Ben was in treatment.  OMG! I miss work!

(Must just update you all.  Mum has been to the toilet today so we are all ok!!! in case anyone was concerned.  How do I know??  She flipping told me at least six times!)

I keep looking at Ben.  He looks different.  When you look at your eleven year old who is well, I am sure they do look different some days.  They start to develop and grow up.  I have to keep looking.  I am not quite sure what it is.  That is why you need your friends around you.  You need people to help you work out what it is.  When you are with someone all the time you don't notice the subtle changes that take place and you miss them.  That is what happened in the beginning.  

Ben had a hoarse voice for so long that I just referred to it as his dulcet tones.  It was only when a friend of Dean's with limited tact (but lovely) asked Dean, what on earth was wrong with his voice, did we wake up.  Mr RP I could never thank you enough.  You saved his life.

 I need you now?  I need you to help me work this out.  Am I missing something or is this just how it is?  Does your mind play tricks on you because you are so acutely hypersensitive to everything that you imagine something that isn't there?  I don't have an answer.  I remember a month ago I kept looking at him and he looked so unwell.  Days passed and I almost convinced myself that he was ok.  Then, I was used to his new look and it was normal.  My sister in law came over and I asked her over and over.  Please tell me.  Does he look different?  Does he look ill? She changed the subject.  After ages of pressing her, her answer was "yes".  It isn't in my imagination then but I can't put my finger on exactly what it is.

I need someone who hasn't seen him to tell me.  Tell me what you think.  What do you see?  Don't be afraid to tell me please, I need to know.

I think that it is his hair loss.  You see, I have an answer.  If there is no one to tell me then I will make my own assumptions.  He has had grade 3 alopecia now since December but I think we have moved on.  He has only 3 eyebrow hairs left now and very few eyelashes.  Never again will I complain about my rubbish eyebrows or my short eyelashes.  At least I have them.  A fortune I have spent on mascaras and various efforts to improve my eyes.  Why bother?  Ben has 3 eyebrow hairs and a maximum of 15 eyelashes across both eyes, most of which are hanging out and he looks beautiful.  Totally beautiful.  When he sleeps I stare at him.  We are so lucky.  So lucky to have been blessed with such a beautiful child with such courage and determination.  (Mothers are biased I am afraid!).  I remember when Ben had had his third lot of surgery.  His surgeon touched my arm and told me that he believed that Ben would do well.  At this point they did not even have a diagnosis.  He said that he would do well as he was determined.  He was clever.  He told me that in his experience patients like Ben did better.  Patients like Ben?  I will not worry about his tests or exam results as this experience in his life will give him something that no exam could ever give him.  I am sure that some of you will remind me of this statement at some point.!

There is a lot to be said about positivity and every day my friends and my family and the readers of this blog, some of whom were strangers before, offer hope, positivity, reassurance and strength each day.  We thank you all x. 

Dean and I have been together now since 2000.  He reminds me most days that he would have got less for committing a really horrific crime.  I do as I have always done since I met him in 2000.  Look at him, think shut up and imagine which other woman would ever put up with a man that cleans his teeth the way that Dean does.  I have never seen anything like it....EVER.  The electric toothbrush comes out and is switched on.  It is then run under the tap (still on), toothpaste is applied (still on) and teeth, face, chin, nose and neck are cleaned.  Occasionally, if we are really lucky, he doesn't even wipe it away before we set off out somewhere.  I sit in the passenger seat. I laugh all the way (secretly, inwardly) at the fact that we are going to arrive at where it is we are going and he is going to have the most ridiculous and largest blob of toothpaste on his face!  It never happens.  He is too vain. He looks at himself in the rear view mirror.  The question is the same.  "Why didn't you tell me I had a massive blob of toothpaste on my face?" My answer is always the same.  "Oh!  I hadn't noticed!"

I love him though, toothpaste and all.  Ben idolises him and Chloe....well Chloe is Chloe!!  He has amazed me.  I should have never doubted really, but I am ashamed to say I did. It is amazing how much you learn each day on this journey.   I am trained.  I spent most of my early career as a cancer nurse.  I know what to do.  Or I should.  Dean has no training in this.  But he is a Daddy.  He looks at his boy and his heart melts.  We share our pain.  We share our concern.  We share our happiness and most importantly we share our children.Whether parents are together or not it is not important on this journey but I bet if you were on it it wouldn't be long before you held each other again and cried.  Remembered what you had.  Together in love is not important but together as parents is.  Your child needs you both.

 I am  convinced that in this journey being together as husband and wife is not important.  What is important is that we all share that common goal and we love our children.  A love that is deeper that anything.  We adore them.  Be together as a family.  Even if you don't love each other, remember what you share.  Your child. The most important and the most beautiful thing that two people have ever created.  I am so fortunate that (although tough) Dean and I remain together.  As parents, as friends and as the only two people in this world that are sharing what we are.  No one else will ever be on the same journey!

T