Day 29/30

Can you believe it? 12 protons completed already. Half way through on Friday. It is flying by now. We are all really settled into our new life and routine. The routine is dictated by proton. We get the time for treatment on a day by day basis. It is actually quite fun not knowing and guessing what time slot he has been given and then, once finding out, spending the next few hours planning the following day around treatment. Doesn't it sound fun to you?
We are now regulars at the craft table at proton. Basically we draw or paint or create whilst Ben is waiting for treatment and then Chloe and I carry on creating (interpret that how you like!) whilst he is in treatment. It is not something I would normally be attracted to but it is actually quite therapeutic. Ben is creating a picture that he adds to each day and Chloe, well Chloe is Chloe! She mainly spends her time getting told off by the lady running it for being bossy or for interrupting! Ben's picture is going to be very special as it will tell a day by day story for him. It doesn't have any proton or treatment related links but it his creation and his daily therapy.
We had our weekly consultation with Dr Dreamy today. His talents are endless! He even managed to listen to Ben's chest today with his stethoscope whilst having a full blown conversation about how busy Disney world is!! Amazing!
Today I asked him a few serious questions one of which was "are you married?" (Joke!).
I asked him are we going to cure Ben with the proton? His reply was " well that's the aim".
I asked him about preserving his swallowing and his skin. His reply was "keep doin what yourrrrrr doin. It's goin great!"
Ok, so I had kind of hoped for something slightly more insightful or inspirational or even radical from the leading proton, worldwide expert, but it seems that my E45 and ice pack, with Aloe Vera sun relief gel are going to be our miracle saviours!
Ben is pretty well right now. His eating has picked up and he has maintained his weight from last week. That is a real bonus. His mood has been slightly better but it is difficult to motivate him. He wants to spend his time indoors which is slightly depressing when it is 92 degrees out there. I am not sure whether this is to do with the proton side effects or whether he is just being a lazy so and so! Probably a bit of both!!
I met a new friend today. She is 19. She was at the craft table creating a card for her Mum's birthday. She was really lovely. She has a tumour in her nose which has spread down into her throat. One of the reasons for the spread was her delay in diagnosis. She was given course after course of antibiotics until it was decided to check her further. She is having chemo and complained about the hideous side effects too. I don't know if she will ever be cured but I hope so. We are lucky.
Along the journey the people are not all great! Some are really odd.
There is pineapple head who genuinely looks like a pineapple. She never speaks, just stares. There is Sprite man! Now this guy is something else! Ben always takes a freezing can of Sprite with him for before and after proton. He says it helps his dry throat. So yesterday he had his before drink and left it on the coffee table with some of our other bits for his return from treatment. So this is a half drunk can of Sprite which belongs to a bald kid with throat cancer. Would you drink it? No? Well Sprite man did. He snuck over and took the can. Oh my flipping goodness! We didn't say anything.
Then there is double button. This guy has a shirt buttoned right up and then another shirt on top. He isn't having proton or even any treatment. He just hangs out! Oh my flipping goodness!
So the last couple of days have been reasonably uneventful. Dean had a meltdown yesterday for 6 hours as he couldn't find his gym shorts. It really was the end of the world. So he went to buy some more. When he got back I hid the new pair! Well I found it funny anyway, so did mum! Dean did not!
As we approach the half way line that means in patient chemotherapy next week. We also have to somehow get him from his bed and drive him for proton. Now for anyone who has seen Ben whilst an inpatient will understand why this seems so impossible. He will be very unwell. He will just want to lay there and not be moved or touched. On a positive note though this should be his last ever in patient chemo and also maybe having to go to proton will give him another focus as appose to focusing on the hideous symptoms that chemo brings. Bring it on.
We will get through it.
I may even have a brief result? A rest from Princess Chloe. In fact I can see Dean and I having an argument over who gets to stay at the hospital! Oh the glamour!
So the time here is passing quickly. Mum goes home on Saturday after 3 weeks. It has been fantastic having her around and I will be sad when she goes home. It is nice to have a reassuring extra pair of hands. In hindsight I am glad that mum and Dean didn't listen to me when I assured them that I was going to do this alone with the kids. I was going to be fine, others manage it. It will fly by. I am glad they ignored my heroism as this would have been not only incredibly difficult at times but verging on unbearable. When you live in a 2 bedroom apartment with 2 children day in and out it gets tedious. As it gets hotter and hotter here you get more irritable when you are climbed all over, hair knotted up and constantly picking up play doh sends you bonkers. However, it is amazing what becomes important. Not how you look or what people think. Not what dress to wear or whether you have the right bag. None of this matters. What matters is what you have around you everyday. The beautiful and adaptable, not to mention strong and brave children, the sunshine, the cleanliness of everything, the good natured and well mannered residents. If any of you have ever read anything or seen anything about the theory of wellbeing then this is what it teaches you. It teaches you to stop and take in your surroundings. Understand and feel what is around you and slow down to take in these experiences which are predominately just real life. How many times have you watched the trees sway in the wind? How many times have you listened to the traffic without it being a disturbance and how many times have you just appreciated good , old silence?
I have received a few comments from people here that we met at the beginning. All have commented that I look stress free (wouldn't go that far!) and that Florida life suits me. Maybe it does or maybe it's just that the pressure is different. Daily life is different. No school runs or work. No time pressures and no others offloading. Does this sound selfish? Maybe. I have never been one to sympathise with what I perceive are pointless and avoidable problems. But who am I to judge? Everybody has problems, everyone has a journey of some description but they are different. What is a huge issue for me will not be for you and vice versa. Ignore me please when I get back and you tell me your story and I shrug it away. I do not mean it. I just can only deal with this right now. Please don't judge me.
Ben's journey continues to attract new donations, which is fantastic. We have met people here and heard of people that have donated money from their charities to do some really good stuff. One of the things we like is the end of treatment bells. It may not sound like much but to the kids going through this regime they look forward to their last day of treatment where as they leave the ward they ring the bells. They symbolise something special, symbolise that part of this nightmare is over. It is a real milestone that the kids can't wait for. The parents can't wait either, believe me. I am getting some fine wine to chill for the occasion (not really a champagne lover!).
So over the next few days we have our daily dose of proton and continue to prepare Ben for his big fight next week. We must feed him. We must ensure his energy is conserved. We must boost his morale. We will be ready and we will get through it.
My parents in law come over soon. Really looking forward to seeing them and introducing them to our new home and life. I am sure they will love this place too. We are also hoping that they might be able to control Chloe who is so fully wired it is ridiculous. There is no flipping off button and I am even contemplating whether to give her a small dose of Ben's Lorazepam! Maybe not. Second thoughts I may give myself a dose then that might work! More wine I think whilst contemplating!
There are things that you miss when you are away for a while.
1. Jacobs cream crackers
2. Work
3. The dog
4. Family and friends
5. Emmerdale
6. New dramas on BBC
7. General chit chat on the phone
8. Weighing myself each morning and sighing!
9. Roast beef from the butchers
10. Sunday with the fire on
11. My god daughters birthday party
12. Cleaning the school shoes
13. My nephews
14. My ironing lady
15. Dettol
16. Washing and drying my hair and it actually looking like it
17. My hairdressers
18. Chloe's nursery
19. Chloe's nursery some more
20. Babysitters
21. Babysitters some more
22. Smells that I don't smell here
23. Nipping into town and having a browse on my own
24. Take a break magazine
25. Weekends away
26. My own bed
27. My own sofa
28. My Dyson
29. Driving my car
30. Everything else that you are doing that's fun that I am not!

So not much really!
What would you miss?

So tomorrow is another day and rain is anticipated for the next few days. If my blogs take a depressing turn then blame it on the weather.

Ben got his therapists to take some great photos today of treatment and he will post them later on.

On that note and from the Carters Goodnight! Xxx


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