Day 31

How can taking your child for proton be fun? Well yesterday was, quite. There was a little group of us who were chatting over a cup of tea and we giggled, compared stories and arranged a night out too!
Again, it was great to compare stories and to learn how one lovely little girl has completed her treatment and is getting ready to go home. She looked great. Her parents looked relaxed. Then my other new friends whose son was out of hospital and looking good after chemo. His mum told us how at this point at home he would have always been an inpatient. So we battle on but our stories give each other hope.
Ben's burns on his throat are getting worse each day. They are mottled and a purple colour. So were the little girls a few weeks ago. Her mum showed me pictures. Then I saw her skin today and it had made a fantastic recovery. It will not be forever. That is what you tell yourself each day.
I really did have a good day. After waking and cleaning (a bit) we went for proton. I received the best present ever. A lady had read my blog! She brought me a little pack of Jacobs cream crackers. I was so thrilled I nearly kissed her!! That was the best lunch I have had in weeks. To that lady. I thank you. (Ps I forgot to mention that I am missing huge diamonds as well!! So if you find it in your heart you know where I will be!!).
Ben's impression of a duck continues to worsen as his swallowing deteriorates, however I am starting to accept the inevitable and work up strategies. Yesterday was ice and Aloe and today I have created a jelly like dressing that I have cooled down and applied to the site. It's lubricating properties, I hope will support keeping his skin in tact. We used to use the technique when I nursed radiotherapy reactions. It worked well then, so why not give it a go? To be honest, and after 30 minutes of wearing my newly created dressing, his skin looks so much better. You can tell yourself whatever you want if it makes you feel better. Why not? Positivity is the way forward.
We shopped yesterday as the rain fell quite heavily. It was the wake up call that told me that Florida life may well suit me in lots of ways but for my abdominal enlargement issue it totally does not! I Found myself actually laying on my front whilst trying on the most fabulous dress. I looked in the mirror and whilst holding the bridge position I truly looked amazing. Then I held a scarf over my middle ( resembling a torredor at a bull fight) Legs were working that dress too. So with the ultimate confidence I removed the scarf. I stood in my most model like pose ... And I removed it. Clearly in my sleep last night I had mistakenly swallowed a barrel!!
But I did get a few new bits ( baggy of course).
Chloe had a real result. Fabulous floppy hat and some lovely dresses. I had a bit of a yellow thing going on today so you wait until you see my little ray of sunshine!
Kevin the teenager on the other hand had different ideas. He wanted the most hideous soccer pants. He wanted! He got! Why not?
Actually he looks great in them as they actually fit! A rarety now for most of his clothes. He always was thin but he is extra skinny now! He might have always been? Who knows? But you blame it on the cancer. You blame everything on the cancer. Blame is a truly normal response to any tragedy. Look at the kubler Ross theory of grief. I am sure blame played a huge part if I remember rightly.
So some new friends have arranged a leaving meal for tomorrow night. It is actually tonight now as I am late posting my blog! I am not managing my time very well!
There are 33 people going so we are really looking forward to it. I will let you know what it feels like to wear makeup. It has been weeks now with no makeup. I had a slight blip on Wednesday when the partial face was applied. Remember though what happens on a Wednesday? That's right. Dr Dreamy!. I did have to laugh when Dean asked whether I was going to a nightclub!!! It is always great to have your mum here in situations like this. Her response was brilliant. Apparently I was brought up to always dress well and look my best to meet the Doctor! Oh my flipping goodness. What era are we living in!???
Anyway I have a lovely dress for next Wednesday!
Last night was lovely. We went to a great restaurant where kindness came in a form we have never experienced. We had our entire bill picked up by a complete stranger. It was really strange. The waitress (or server as they call themselves here) came over and said that another visitor of the restaurant had taken care of our cheque. They did not make themselves known. We were stunned. This journey has taught us a great deal. It has taught us what really does matter, it has taught us coping strategies that you would never know existed, it has taught us that intelligence is not about academia and then achievement should never be valued in monetary terms. It has taught us that there are so many very beautiful and kind people in this world. It has taught ME that when you get knocked down, you get up again. You fight with everything you have. When you are strong and defiant against the odds you can win. You must win. There is no other choice.
I had a Skype meeting with my boss this morning. It was actually great. My brain was working! I was worried that it had stopped. I was in my own world for 17 and a bit minutes! I did my face again this morning but when he answered he said "oh". He then waved. I am sure he didn't mean oh as in OH! More like Wow!. The best thing about Skype is you control what the viewer sees. My Skype tip for you all. Ensure you hold the phone exactly where you want to be seen. If your makeup is marvellous then do not lose your grip so that your boss sees below your neckline. Full face and hair done, wearing ridiculous pyjamas is not a great look! Fortunately my grip was good.
Joking... I did not have my pjs on. I put on a suit and I shined my shoes! (just in case the boss reads this or in case the grip was to slip!)
So an eventful couple of days but I haven't quite finished. I hope you have enough time to read on.
The craft table. On day 1 was something I almost showed pity on. Not when the kids were creating but grown adults? What were they doing?
Today (yesterday) Dean and I participated in art therapy. These are the techniques to use to reduce blood pressure and ease breathing!
Step 1 - get a piece of card
Step2 - place 4 dots at each corner
Step3 - join your dots in anyway you want. It can be straight or wiggerly or wavey etc.
Step 5- in your pattern draw 4 lines that divide it up.
Step 6- In each segment draw another pattern. In one do random size circles, in another lines, in a third shells and in a fourth symbols.
Do it in thin black Ben.

They make amayshing carrrrds daaaarrrlinnns !
And so they do! Colour in each section.
Theyyyyure gow sweeeeetie. Thatssss therapeeee.!!!

Did you like it? We did?
I will get a picture of Dean next time! Can you imagine it. Dean sitting at a craft table drawing? I told you that this journey does some crazy and amazing things!!

He was so absorbed and so relaxed. It was so lovely to be part of.
So tomorrow she goes. (It's actually today, in fact in about an hour). We don't want her to go but we know she must. She is moving in 6 weeks and hasn't even found a house yet! My Dad is going stir crazy with boredom!
We are half way through. Mum leaves, Ben ... Is Ben. He tried again to get her to stay. That is why I didn't end up posting my blog in the end as I was stopping Ben making my Mum cry!
I know she will stay if I ask . But I won't. It is not my style.
My mum looks like she has enjoyed it here. She looks 10 years younger. She is glad to have been part of it, she won't forget it. We won't forget it. We don't want her to go. She has to.
We love you mum, and you know that Don't you? Thank you for your help and support, thank you for being part of this part of our emotional journey. No one will ever know what it was like except for us, will they? Not really.
So we are half way through treatment now. After chemo next week we are on the homeward stretch. Do you miss us? We miss you.

Must dash to get mum to the airport.
So from the Carters- have a great day xxxx



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