Day 32 and Happy Sunday and the first day of Spring!

Tonight, is one of those nights.
It shouldn't be really as we have had a lovely meal with some great families. Some have finished proton and others are still on the journey. Like I have always said, everyone is different and although we all share something in common, each of our children's conditions are very different. Tonight there was not just children receiving proton but also older people. I met a new friend tonight. He is 24 and a really lovely guy. He has lived with his diagnosis for a long time. He had surgery four years ago and now having proton. He looked "normal". He did not look unwell. He was athletic, self sufficient and bright. If you are 24, then he is a good catch! He found out he had cancer when he developed paralysis and bladder problems. After a number of diagnostics they found his cancer at the base of his spine. He told me his diagnosis but that is his story to tell, not mine. He was good company and a week ahead of Ben with treatment. Before proton he and his friends had arranged a holiday in May to Florida and planned the parks etc. He is coming back! He told me of his symptoms from proton. Basically, he could feel just fine and then all of a sudden complete tiredness would sweep over him. He is an adult. He can choose what to do when this happens and he does, he rests. Ben doesn't really complain of the same symptoms but then he doesn't really complain at all. What if he feels like my new friend and he doesn't tell us? Are we pushing to motivate him too hard?
I have always believed and continue to, that your body tells you what needs to be done. We all have those times when our body basically tells us "no more". We become unwell or we feel low. But does a child know that feeling yet?
When I think about this and look at Ben I don't know. I tell you he is well and doing brilliantly. I think he is. Then I see a photo of him from six months ago. It is different, he is different. I wish so badly for him to be like he was again. Sometimes I don't even see the change. It is because when you live day in and out with a person their changes are not so apparent. When you see them after some time apart, that is when you know. You know that things have changed. They have changed so much that it is impossible to see how it could be better. But it will be.
Tonight was fun. Ben and his new friend sat and ate whilst me and my Jacobs cream cracker friend monitored each mouthful they both took. I think they chatted as at one point they left the table together to go outside! That was amazing! Little things these days mean a great deal. It is hard for our kids. They were thrown into this. They are trusting us. It is the best thing for them and that is that. In their head though do they think the same as we do ? Do they believe that this is the best for them?
Probably seeing their friends, going swimming, enjoying parties or sleepovers seems to them like the best for them. Not being dragged thousands of miles for daily treatment of which they cannot comprehend. We know though. We know what is best. I am sure they do too. This is the right thing to do.
So tonight's meal was to celebrate that a gorgeous little girl has completed her treatment and coming home on Monday. Her parents are happy here. She looks good. I don't think they want to go home. Their autopilot has taken over. Just like when they were told to come here, they came. Now it is time to go, they go, There is no choice. Not now anyway. She lands and goes for chemo the next day. I can't take my mind off her.
Chloe and her have become little friends. Chloe doesn't judge. She has been living in this world now where children who are unwell or having treatment are the norm for her. She actually thinks that she has long hair! Well you would too if every other child you met had none. I asked her today if she thought we should go for our hair cutting. "Not here mummy! Please. They always shave it off!! " she wants to look like Elsa. Me too!
Today was always going to be tough with mum leaving. It was. It was really really tough. Not just for me and the kids but dean too. She has been a part of this. She has never complained , never grumbled and never judged. Outwardly of course!! Penny for those thoughts though??!
I was the adult today. We took her to the airport and she cried. Of course she did. She actually loved it here too. But she knows that to understand it you really have to live and breath it. She has slept with Ben every night. She has bathed Chloe every morning! I have never had the heart to tell her that Chloe still gets in with me, so basically had two baths each morning! She knows though, of course she knows. And Ben's chats with her?. They are special and I know she will ,as we will,treasure them forever.
Ben wanted to cry this morning when she left. I knew he did , but he wouldn't. Not unless I did. He asked me over and over "mummy are you going to cry". Well I wasn't. If I had, I may not stop.
So he didn't cry.
He tried though to make me. "Mummy, I think your eyes look wet"
"New eye cream"
"Mummy are you not sad?"
"No, a change is as good as a rest"
"Mummy, it's going to be very strange without grandma"
"Yes it is but it will be fine"
"Mummy, will she come back if we ask her?"

Oh my flipping goodness.
"No she will not"
"Mummy"
"Shut upppppppp!"

She knows. She knows what she means to me and our little family and I am pleased she has got over the phobia of unwell Ben. She has been through it all with us this last three weeks and some bits have been very hard. We are grateful and we love her. We also know that the last three weeks have changed her. She looks good. She is more relaxed. It is a shame others don't treat her the same as we do but that is a different blog!

OCD is a sign of stress. Have you got it! I love cleanliness but I can become very very obsessive. In hotels I live like a rocker! What a state. But at home, it plays upon my mind. I have been good here. Bleach has been used in normal quantities and cleaning as required. Tonight though I want to bleach. I want to flipping scrub and I even want to redecorate! I wont, I will regain control.
Have you ever felt it though, when you need to cry. The feeling makes Your throat dry and your eyes bulge. But what happens if you start? You may never stop?
I want to cry tonight. I am cross tonight. Take this away please. Whatever we did to deserve it, we will put right.

We didn't deserve it though. No one does. It is what it is. Why us though? Why Ben? Why my beautiful boy? He has never hurt a soul?
He did once wee on his Bffs school trousers whilst having a communal pee. But really?!
It is what it is. I can cope. But today I am angry. I do want to cry. So badly that my throat is burning and my nose running. I will not cry. Not now. But I will later. It will be silent though and I need noise! I need big fat sobs. I need to shake and hit and scream. Not now though. My OCD means I have to track mums flight every 5 seconds.! No time to cry .
All is fine. The report is that it is still in the air. That is good news!

I have been positive, I think. But Ben is starting to have problems. On the outside of his throat he has sunburn but tonight he is starting to blister. What goes on on the outside, is the same inside. That is what we were told by Dr Dreamy.
I am petrified. I am so scared that I don't know what to do to help.?
He has started to cough more now and that must be the inflammation. It is such a scary place to have cancer. Your throat? I mean really. The space is too tight to cope with any swelling. He will get through it though and life will resume. One day.
We have a great plan for Sunday. We are having a roast dinner. The first we have had in weeks. I am excited! Can you imagine? An actual roast dinner. No Ranch dressing, no fries, no take home box because the portion in your plate is so huge!
A plain old regular Sunday lunch.
Next week is chemo week. Hospital on Monday to check him out and to have bloods and his Hickman line dressing done. Proton not until 2030 on Monday. Chemo on Tuesday and Wednesday with the proton as well. We should be out of hospital by Thursday.
Please, if there is anyone up there that can hear me. Give the kid a break this time. Please.
Please, if there is anyone up there that can hear me. Please don't let him be sick and feel so dreadful. Please.
Please, if there is anyone up there that can hear me. Please please please.
He will be fine. He will get through this.
Now I must go and dream about Sunday lunch. You know what they say. Little things...
So from the Carters.... Happy Sunday xxxxxxxxx


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