Day 33/34

Well the week that we have been dreading is finally upon us.  

 

It, for us, is the worst week since treatment began.  This is as a result of the fact that we know how unwell Ben is when he has his chemotherapy.  He is sick. So very sick.  The sickness paired with radiotherapy burns, which are now becoming reasonably extensive, are a frightening combination. That as well as having to get him from the Children's hospital to the Proton centre each day have always been a daunting prospect. You know how horrible it is when you are violently sick?  Think how terrible it is to be that sick when the inside of your throat is burnt.  We have to control his sickness.  Think about how horrendous it must be to be dragged from your bed when you feel so terrible and then to have to travel to another centre to receive proton.  We have to control his sickness.  Then to have to be pinned down to a table, wearing a full head and neck mask and gum shield when all you need to do is vomit.  We have to control his sickness.

So far, though, so good!  He is not quite dancing around the room but between his long and deep sleeps he is chatty and slightly balmy at times.  He keeps asking me to turn up the radio.  There is no radio!  I think that the medication is causing some mild hallucinations. 

 

I look at his face and I wonder what it feels like. What it really feels like.  I ask him to describe it, but he can't.  He doesn't know how he feels.  He has never has such a feeling to comprehend.  He says he is ok.  But we know he isn't.  But it isn't for long.  He will recover.  He will get better.

 

On Monday he had his proton quite late.  It wasn't scheduled until 2030 and there was an added delay meaning he was finally treated at 2150.  We arrived at the Children's hospital at around 2330 and his hydration commenced.  Ben never ceases to amaze me.  His courage is something that I could never have imagined from a child.  His positivity and his determined attitude is what is getting him through this, and is what is getting us all through this.  He was so bright on Monday, that again we forgot for a second how bad it gets. I keep replaying conversations that I have had with my new friends about their children's inpatient experiences whilst in the US.  Their stories are positive, their children have done well.  I know that, I have seen them.  They have got through it.  Ben will too. 

So Monday passed without much of a problem really and we got up early for his 0640 slot at proton.  He was fine.  He would be, his chemo hadn't started. We needed to come in on Monday night to ensure he was adequately hydrated.

Let the chemo commence!  We were ready to take it on! 

It did commence on Tuesday at 11am.   Ifosfomide and Vincristine.  He misses his dose of Actinomycin as you can't have this and radiation at the same time. That must be a bonus?

Ben continued to chat to us, shout at Chloe and to look on his phone and continued to annoy me by posting a whole heap of ancient messages on Facebook! But just do anything Ben that helps pass the time and take your mind of this cruel battle.  

The Doctors have listened to me.  He has more anti sickness medication than most pharmacies stock.  He has had an anything and everything cocktail, going around the clock. The nurses have never forgotten.  I have never had to chase them around the ward asking for them to please make sure he is topped up. They do it, it is their job.

Dean and I have chatted at length about the health care out here and whether it is superior.  I haven't noticed anything that strikes me as something that is more spectacular than we have in the UK.  But there is a difference.  There is a huge difference.  I think that is why so many families that come here, end up not wanting to leave.  Remember, our primary goal is to make our children well and to ensure that they have the best.  If I thought that Ben was getting better treatment and by staying here he would be well, then of course the answer would be that I would be staying.

The difference here is the culture.  The attitude of the staff.  The customer service.  The prioritisation.  The approach.  The philosophy.

The difference is the privatisation of healthcare and the demand on services.

The nurses here tell us they are busy.  They are.  But their workload does not mean that they are late with medication, that they forgot to order something vital or that you are not ready to be discharged when you should be.  Their workload does not mean that they don't have time to spend with you and that they listen but don't hear.  They are not moody, they don't excuse poor care due to time constraints, they don't complain and they don't go for their break at the point that your child is due medication to prevent their pain or their sickness.

They do wear nail varnish and trainers.  They wear long sleeves and lab coats.  They wear jewellery and theatre blues.  They work from a great big nurse's station and have walkie talkie like solutions to answering queries or seeking their colleagues out in a quiet and controlled fashion.  They have staff rooms and rest areas.  The nurses call bell is answered electronically, the patient records are electronic and you have access to them.  They come in often and check Ben often.  They wait on us.  Anything we need they get for us. Except for a constant supply of Gin!

It is different here.  But, it has to be, if you run a service which relies on customers paying for it.  

We don't pay for it, not directly anyway.  It is all part of the proton journey.  But our NHS pays for it.  I wish some of those people belonging to the NHS could come here and sample the goods.  See what they are paying for, they would be impressed for sure.

I am not complaining about our NHS.  We have had fabulous treatment both from our local provider and in London.  I am not faulting it (well most of it).  It is just different that's all.

Something else that is different it that we have all been able to stay with Ben.  Is that a good thing?  I asked him last night and he said it was better.  He felt safer and it was more interesting than just having Mum or Dad.  I got his point.  

Some years ago, I had Chloe 5 weeks early.  I had to have a C-section with Chloe.  She has always been tricky!  Although she was fine on the scale of things, she still had to go to SCBU and I still had to stay in for 9 days.  It was one of the scariest times of my life.  I genuinely thought I was going to die.  I wasn't. I was just acutely anxious.  I did not want to be on my own.  I was in pain.  I didn't have my baby with me.   

In 2012, husbands or partners were not allowed to stay at the hospital.  This was my worst nightmare. Fortunately, I had a little bit of clout at the hospital and Dean did get to stay.  I genuinely have no idea how I would have got through those days without his company.  Without someone to hold me and tell me it was ok.  I also don't know how the midwives would have coped if he hadn't been able to stay!  We were lucky then, we are lucky now.

I hope that things have changed now and partners can stay.  They certainly were trialling this a year or two ago.   

You see, I am pathetic.  Ben doesn't get his strength from me. 

Ben slept a lot yesterday afternoon and then slept very well overnight.  It is the cocktail of antisickness drugs that are doing it.  But that is better, much better than constantly vomiting.  He is well hydrated too.

We managed to get him up and to proton again with no real hiccups.  We made new friends at proton today.  We actually saw them for the first time yesterday and they were really chatty and happy.  What is it about people in their 50s and 60s that make them function at 640am?  They are showered with fresh hair and they had clearly had breakfast and a jog in the park.  We on the other hand were the bipolar opposites. 

 I have learnt now to always wear pyjamas that could double up as a tracksuit in an emergency situation or similar.  I sleep with my hair tied back in case I need to leap out of bed and leave quickly and my slippers have been replaced by my flip flops.  So now my appearance is, not so much just got out of bed, more like, look at the state of that!  Note to self - start sleeping in your bra.

Chloe had the same look going on, despite a quick change before leaving due to her bed wetting incident.  She has a delightful leopard skin onsey which I managed throw on her. No bath before proton.  No bath for either of us and she had peed over my neck.  Lovely!

Ben has to be slightly fresher.  Morning, chemo breath would strip the paint off the walls, not to mention melt his face mask and gum shield!

Our new friends were a couple.  The man was having proton for a benign lesion near his eye. He is so jolly and friendly.  He has said Hi to the kids a couple of times.  I have tried to keep away due to my morning appearance.  You would have thought that I would have learnt by now that people will chat to you despite the time of day.  You will meet new friends and you really should try harder to look more presentable.

This morning our new friend came to Proton with 2 fabulous cuddly toys, one for each of the kids.  They are lovely and all wrapped in a big see through package.  Chloe nearly took him arm off when he handed it to her.  "I want that one!"  Clearly they had seen the kids before and it struck a nerve.  It does, you know, with lots of people.  We forget sometimes as it has become the normal.  We forget that Ben looks different now.  He has no hair, anywhere.  He is pail and frail.  We are used to it.

Our new friends presented the kids with these toys and both had a message.  They had come from the First United Methodist church, where they had been among the congregation. The Caring Critters as the toys had been named had heard the word read, listened to prayers prayed, songs of praise and sermans preached.  They were now given to the children to bring blessings of worship and love.  The message was not overpowering or frightening, but simply lovely and kind.  It doesn't matter what your religion or belief is.  It is the message of love that is important.

Our new friends took some photos and I will share them with you.  I managed to keep myself out of the frame than goodness.  We will stay in touch with our new friends who are keen to hear news on Ben's progress and who will pray for him and keep us in their thoughts.

Now, this was a nice religious message that we received this morning.  Last night's message was a different kettle of fish.  Dean was with me, but if he wasn't he would have never believed me when I told him. 

I will try to write this down but I don't think I will be able to present it well.  It was just too strange and disturbing,

We have been looked after by an Argentinian Care Assistant for the last two nights.  She had seemed ok up to last night, if not a little rushed and brash.  She hasn't spoken much, until last night. 

Last night she would not shut up.  She obsessed for at least 25 minutes about weight.  She told us of her struggle to remain thin whilst living in the US.  She told us about her fat friend who was about to have a gastric band in Mexico.  She told us about the food she eats and what her children eat.  She told us about her divorce.  She was racist.  She told us that she was religious and catholic.  I made a fatal error.  I should have listened to my sister, all these years, when she has told me not to bother engaging in conversations that I really am not interested in having.  I made a fatal error.

"Will you be going to church this Sunday to celebrate Easter" I asked her.

Oh my flipping goodness!

She will not be going to church as she celebrates her Catholicism in her own way.  Fair enough. 

She will not be going to church as she once revealed in confession that she had received the soul of Jesus Christ inside her. 

She will not be going to church as the Priest revealed her confession and the congregation judged her for it.

 

Some time ago she had been feeling strange.  She has a visitor at her home.  She collapsed and cried hysterically.  She did not know why.  Later her visitor had gone home and telephoned her to explain what had happened.  Her visitor explained that she was ready now, ready to receive the Soul of Jesus Christ inside her.  So she was ready and now Jesus Christ lives on in the Argentinian Care Workers body!

 

Now, she is telling us all of this, whilst hovering over Ben's bed.  He was asleep but I am sure that he could hear this weird conversation.  She continued on and on and on.  She got scarier and weirder.  I stood up and planted myself between her and Ben.  She was way too strange to be taking care of him.  

She went on to tell me that she saw Angels and knew when they were coming.  She prayed for the children on the ward and was also able to tell parents when the Angels were on their way to collect their child.  Only a few weeks ago had she informed a Mother that the Angels were on the way for her daughter.  Strangely enough, the Mother had not reacted well to this and some incident took place.  Her rationale was because she wasn't ready to hear it.

Now, it was time for her to leave.  I had decided that and I ushered her swiftly out of the door and then arranged a shift pattern with Dean.  He would do the first half of the night and me the latter to ensure that this woman did not go near our son.

Oh my flipping goodness!  Roll on tonight! I wonder who she has ingested since we last saw her.  It is no wonder she has weight concerns!

 

So wierd as it was last night, the rest of the experience has been better than we could have hoped.  Ben carries on.  

Chemotherapy is so brutal though.  Only 48 hours ago he and I were hunting for sharks teeth on the beach at Amelia Island.  Now, he just lays there looking pained and miserable. Looking pale and vulnerable.  But that is the chemo and not the cancer?  It has to be.

 

The journey continues and we hit yet another milestone.  No more inpatient chemo.  No more ifosfomide.  17 protons now ticked off and only 11 more to go. One more outpatient chemo here and then home for the final 2.  We are on the homeward stretch.

 

I believe that I have felt every emotion possible on this journey so far.  The emotions continue to roller coaster but I can see the light at the end of the tunnel. I can imagine life without hospitals and treatment.  I can imagine having a healthy and happy boy.  It no longer feels like a fantasy as the end approaches . Fantasy is turning into reality.  Reality is getting nearer.  Will I know how to be normal again?  Will any of us?  It will take time.

 

Positivity is the way forward when dealing with this disease.  What ever it has in store for you, strength and determination is your power.  You have no power to control the outcome but with determination and positive thoughts you can definitely influence the journey.

 

So onwards and upwards now for Ben and as the finish line gets closer we continue to value your support and your messages.  They do spur us all on.  For now and from the Carters - Have a good day xxxx