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Thursday 31 March 2016
Day 39/40
Everyone we have met here so far now have a very special place in our hearts.
It doesn't matter whether old or young or where they are from. Or what their story is.
They have been special, in their own way, with their unique Fathers, Mothers or children. They are on their own journey, like ours. But only different.
When you are on the cancer journey, you are good people. Everything you do is about being good. Somehow if you are good, well behaved, kind and caring, you will get better results. That doesn't happen. Cancer doesn't assess you before moving in. Cancer doesn't care about age, about colour, religion or creed. Cancer just comes.
This bad thing has happened to you but you don't deserve it, no one does.
You would not choose most of these people here as your friends. There is nothing that you really, outside of this forced bubble, have in common. But you share something, something that no one else could ever imagine, unless you are in the thick of it, on this hateful journey.
On the whole you conform, as much as you can anyway, and on the whole you meet people that are truly amazing.
Some of those you know will be life long friends and others will be there. In your heart. Forever.
But wherever you are and whatever you do, there are always THOSE people. You are not sure about them, or they are just truly crackers!
On this journey though you make allowances.
Who would not be a little bit barmy, knowing their child is sick and watching them go through such a harrowing ordeal?
Then there are just true "no no" people.
That is my term for anything or anyone who is just a little .... No no!!
Although I write about it, I don't give the "no nos" any justice because it is almost incomprehensible.
Is it because they are scared?
Is it because they themselves are unwell?
Is it because they have a different mission?
I wish I could tell you! All I can say is "no no."
Yesterday's new friends turned out to be today's friends too. Purely because of the times that we had been given for proton. Another late evening appointment.
When we arrived, it was normal. Ben scanned his badge and waited. The therapist both collects and returns your children. For this you are grateful. You adore the therapists. The psychology allows nothing else. They take your child and then they return them. They are ok. They walk in and they walk out.
But THAT therapist burnt your child. And then they returned them. Just as if nothing had ever happened. You are truly grateful. Why wouldn't you be grateful?
You are though, very grateful. You are, because their technical expertise, cures your child. Doesn't it?
The proton time you are allocated does determine your experience. If you get early mornings then you meet the work crew. These are those who nip in for proton before work. One of our new friends always gets this slot though. I reckon it it because her mum looks good in the morning!
The lunchtime slot means you meet the dauderlers. They haven't anything to do. They hang around after their morning slot or arrive early for their afternoon slot. They like it at the proton centre. They belong.
Mid afternoon brings the families. This is the best slot of all. This is the normal, family orientated slot. The siblings who are not having proton play in the children's room. The adults who are desperate to demonstrate how well their child is, drink tea. We are British after all!!
Then there is the late slot. Anything up to midnight. We have not been that late yet but we are getting later.
The experts get late ones, the old hands. That is what Ben is now, after all he has only 7 more sessions to go.
You wait all day if you get this slot. You can't go far as sometimes they call you in early. If the weather is good you can relax by the pool. If it isn't then you ......wait.
I hate the late night slots. This week in particular, they have been hard. Ben seems to lack motivation and determination now and when we arrive there is none of his new friends, none of our proper new friends. Just the "no nos."
The latest two families of no nos don't seem to get it. They behave in ways that are just not right. But who am I to judge?
One man could not get over the fact that Ben is bald. He asked him why he had no hair. Is he for real? The kid is having chemo. I didn't need to step in though as Ben just dealt with it. The way Ben does. He rolled his eyes and he walked away. The man continued to talk at me. Every other word started with F. He was loud. He was brash. But most of all he just didn't get it. He couldn't comprehend why so many people at proton looked unwell. They are having cancer treatment for crying out loud!
He believed that your fate is written in the stars. Oh my flipping goodness! Can you believe his child is having proton too?
Another family were hanging out at the beach all day. The mum, her cousin and her young daughter who is having proton. They turned up to proton completely drunk (the mum and the cousin). Now don't get me wrong, I am not judging the drinking thing. That would be slightly hypocritical given that my middle name is Chardonnay and has been for a number of years! But to drive 30 minutes to proton, after a day of boozing at the beach. Surely that is a no no?
So you meet folks who cope differently, who are just different.
Ben seems defeated today. He is refusing to swallow at all due to his pain. The Doctor had described it as the worst sore throat that you could ever imagine. I can't imagine it.
He is now on morphine now and a full feeding plan. It is tough now. It is very tough.
I must administer at least five feeds ,of 250 mls per day, as well as over 800 mls of water. This is through his peg. I can only run his feed at 150 mls per hour as he feels sick if it goes any faster. So with a total volume of 1800 mls needing to be administered at 150 mls per hour, that is 12 hours of feeding! (At least I think it is !).
We still have to get to hospital appointments and proton and we still have to live. We still need a life, we still have princess Chloe! My mission is to work out how to do this feeding thing in a more efficient way.
I am not alone. Lots of the other children need feeds. I can share my issues. That helps.
I wish Ben would help himself though. Does that sound cruel? I don't mean to be cruel, I just want him to be ok. I am managing to keep the outside of his neck under control. I give him all his medications, I give him his feeds. I monitor his toilet situation and administer things to make him go, and things to make him stop. I deliver aromatherapy techniques. I wash him, do his mouth care and his dressings. All I need him to do is to try to swallow. I can't do that for him.
I can't let him give up this easily.
As soon as the pain started, he has just stopped.
He carries a spittoon with him. He refuses the mouthwashes that he needs. He will not help himself. He is low in mood.
There does come a time when you hit the wall during this journey. You just keep getting dealt more and more. You can't deal with anymore. You get tired. Ben is tired. He is physically and emotionally drained. He is anxious and he is angry.
I would be angry too, wouldn't you?
Tomorrow is a new day.
Tomorrow is a day for motivation and uplifting. I will think of a plan. I always come up with a plan.
Chloe does make us all chuckle though when things get bad. Today she has "told" on Ben hundreds of times. You see, we teach our children not to spit. It is rude, it is bad manners. So every five minutes she tell me that Ben is being disgusting! She tells Ben off. He does laugh at her motherly bossiness!
It must be strange though for her. She can't possibly get it. Not really. Not properly.
Ben didn't join us at the table for our evening meal. I am not going to make him do that. I can't make him sit and watch us eat when he can't even swallow his own saliva.
Chloe asked me why Ben wasn't at the table and so I explained. As she tucked into her salmon, exclaiming yum at every mouthful at the top of her voice, I could see her thinking.
She finished her meal. She told me it was lovely. Ben would have liked that she told me and then she said it. She said that I needed to help Ben, if only I could.
It is hard to think that soon proton will be complete. He will have done it. But we know we have some tough times ahead over the next few weeks. The saving grace is that his blood counts remain great and as yet he has only lost 1lb. Pretty amazing really. He will get through this, we all will.
The time here is really flying by and it is difficult knowing that there is so much we want to do or see while here. We won't be able to, though, I don't think. I just don't think Ben can do it anymore.
It is always harder to blog when the news isn't great. Friends have messaged to check we are coping. And we are. We really really are.
As I have always said, this is a journey and around each corner there is something new. You just have to manage it, to deal with it in the way only you know how. We are being strong. We will get to the end if this and then life will resume its natural course. One day.
On a very sad note, I have no Jacobs cream crackers or wine tonight. Slightly depressing really. My Jacobs cream cracker friend is in hospital as it is her boy's chemo week. She has a lot going on, I can hardly ask her for more crackers! Can I?
Our late appointments mean it is too late for wine when we get back so I suppose that is one little bonus. Not for ones psychological well being but I suppose for the liver at least!
So 7 more protons to go. 21 completed. The boy has done great. He really has. We all have.
So for tonight, sweet dreams.
All our love - the Carters xxxxx
Sent from my iPhone
It doesn't matter whether old or young or where they are from. Or what their story is.
They have been special, in their own way, with their unique Fathers, Mothers or children. They are on their own journey, like ours. But only different.
When you are on the cancer journey, you are good people. Everything you do is about being good. Somehow if you are good, well behaved, kind and caring, you will get better results. That doesn't happen. Cancer doesn't assess you before moving in. Cancer doesn't care about age, about colour, religion or creed. Cancer just comes.
This bad thing has happened to you but you don't deserve it, no one does.
You would not choose most of these people here as your friends. There is nothing that you really, outside of this forced bubble, have in common. But you share something, something that no one else could ever imagine, unless you are in the thick of it, on this hateful journey.
On the whole you conform, as much as you can anyway, and on the whole you meet people that are truly amazing.
Some of those you know will be life long friends and others will be there. In your heart. Forever.
But wherever you are and whatever you do, there are always THOSE people. You are not sure about them, or they are just truly crackers!
On this journey though you make allowances.
Who would not be a little bit barmy, knowing their child is sick and watching them go through such a harrowing ordeal?
Then there are just true "no no" people.
That is my term for anything or anyone who is just a little .... No no!!
Although I write about it, I don't give the "no nos" any justice because it is almost incomprehensible.
Is it because they are scared?
Is it because they themselves are unwell?
Is it because they have a different mission?
I wish I could tell you! All I can say is "no no."
Yesterday's new friends turned out to be today's friends too. Purely because of the times that we had been given for proton. Another late evening appointment.
When we arrived, it was normal. Ben scanned his badge and waited. The therapist both collects and returns your children. For this you are grateful. You adore the therapists. The psychology allows nothing else. They take your child and then they return them. They are ok. They walk in and they walk out.
But THAT therapist burnt your child. And then they returned them. Just as if nothing had ever happened. You are truly grateful. Why wouldn't you be grateful?
You are though, very grateful. You are, because their technical expertise, cures your child. Doesn't it?
The proton time you are allocated does determine your experience. If you get early mornings then you meet the work crew. These are those who nip in for proton before work. One of our new friends always gets this slot though. I reckon it it because her mum looks good in the morning!
The lunchtime slot means you meet the dauderlers. They haven't anything to do. They hang around after their morning slot or arrive early for their afternoon slot. They like it at the proton centre. They belong.
Mid afternoon brings the families. This is the best slot of all. This is the normal, family orientated slot. The siblings who are not having proton play in the children's room. The adults who are desperate to demonstrate how well their child is, drink tea. We are British after all!!
Then there is the late slot. Anything up to midnight. We have not been that late yet but we are getting later.
The experts get late ones, the old hands. That is what Ben is now, after all he has only 7 more sessions to go.
You wait all day if you get this slot. You can't go far as sometimes they call you in early. If the weather is good you can relax by the pool. If it isn't then you ......wait.
I hate the late night slots. This week in particular, they have been hard. Ben seems to lack motivation and determination now and when we arrive there is none of his new friends, none of our proper new friends. Just the "no nos."
The latest two families of no nos don't seem to get it. They behave in ways that are just not right. But who am I to judge?
One man could not get over the fact that Ben is bald. He asked him why he had no hair. Is he for real? The kid is having chemo. I didn't need to step in though as Ben just dealt with it. The way Ben does. He rolled his eyes and he walked away. The man continued to talk at me. Every other word started with F. He was loud. He was brash. But most of all he just didn't get it. He couldn't comprehend why so many people at proton looked unwell. They are having cancer treatment for crying out loud!
He believed that your fate is written in the stars. Oh my flipping goodness! Can you believe his child is having proton too?
Another family were hanging out at the beach all day. The mum, her cousin and her young daughter who is having proton. They turned up to proton completely drunk (the mum and the cousin). Now don't get me wrong, I am not judging the drinking thing. That would be slightly hypocritical given that my middle name is Chardonnay and has been for a number of years! But to drive 30 minutes to proton, after a day of boozing at the beach. Surely that is a no no?
So you meet folks who cope differently, who are just different.
Ben seems defeated today. He is refusing to swallow at all due to his pain. The Doctor had described it as the worst sore throat that you could ever imagine. I can't imagine it.
He is now on morphine now and a full feeding plan. It is tough now. It is very tough.
I must administer at least five feeds ,of 250 mls per day, as well as over 800 mls of water. This is through his peg. I can only run his feed at 150 mls per hour as he feels sick if it goes any faster. So with a total volume of 1800 mls needing to be administered at 150 mls per hour, that is 12 hours of feeding! (At least I think it is !).
We still have to get to hospital appointments and proton and we still have to live. We still need a life, we still have princess Chloe! My mission is to work out how to do this feeding thing in a more efficient way.
I am not alone. Lots of the other children need feeds. I can share my issues. That helps.
I wish Ben would help himself though. Does that sound cruel? I don't mean to be cruel, I just want him to be ok. I am managing to keep the outside of his neck under control. I give him all his medications, I give him his feeds. I monitor his toilet situation and administer things to make him go, and things to make him stop. I deliver aromatherapy techniques. I wash him, do his mouth care and his dressings. All I need him to do is to try to swallow. I can't do that for him.
I can't let him give up this easily.
As soon as the pain started, he has just stopped.
He carries a spittoon with him. He refuses the mouthwashes that he needs. He will not help himself. He is low in mood.
There does come a time when you hit the wall during this journey. You just keep getting dealt more and more. You can't deal with anymore. You get tired. Ben is tired. He is physically and emotionally drained. He is anxious and he is angry.
I would be angry too, wouldn't you?
Tomorrow is a new day.
Tomorrow is a day for motivation and uplifting. I will think of a plan. I always come up with a plan.
Chloe does make us all chuckle though when things get bad. Today she has "told" on Ben hundreds of times. You see, we teach our children not to spit. It is rude, it is bad manners. So every five minutes she tell me that Ben is being disgusting! She tells Ben off. He does laugh at her motherly bossiness!
It must be strange though for her. She can't possibly get it. Not really. Not properly.
Ben didn't join us at the table for our evening meal. I am not going to make him do that. I can't make him sit and watch us eat when he can't even swallow his own saliva.
Chloe asked me why Ben wasn't at the table and so I explained. As she tucked into her salmon, exclaiming yum at every mouthful at the top of her voice, I could see her thinking.
She finished her meal. She told me it was lovely. Ben would have liked that she told me and then she said it. She said that I needed to help Ben, if only I could.
It is hard to think that soon proton will be complete. He will have done it. But we know we have some tough times ahead over the next few weeks. The saving grace is that his blood counts remain great and as yet he has only lost 1lb. Pretty amazing really. He will get through this, we all will.
The time here is really flying by and it is difficult knowing that there is so much we want to do or see while here. We won't be able to, though, I don't think. I just don't think Ben can do it anymore.
It is always harder to blog when the news isn't great. Friends have messaged to check we are coping. And we are. We really really are.
As I have always said, this is a journey and around each corner there is something new. You just have to manage it, to deal with it in the way only you know how. We are being strong. We will get to the end if this and then life will resume its natural course. One day.
On a very sad note, I have no Jacobs cream crackers or wine tonight. Slightly depressing really. My Jacobs cream cracker friend is in hospital as it is her boy's chemo week. She has a lot going on, I can hardly ask her for more crackers! Can I?
Our late appointments mean it is too late for wine when we get back so I suppose that is one little bonus. Not for ones psychological well being but I suppose for the liver at least!
So 7 more protons to go. 21 completed. The boy has done great. He really has. We all have.
So for tonight, sweet dreams.
All our love - the Carters xxxxx
Sent from my iPhone
Tuesday 29 March 2016
Day 37/38
It is strange how this just creeps up on you. When you figured you had it under control and you thought that you were doing it right. You wake up and it has all changed, again.
When I have previously written about Ben's symptoms from the proton, the red neck area and the difficulty swallowing. I think I may have convinced myself that that was the final level, that it wouldn't get worse. But it has. So much very worse.
They do tell you, the Doctors and the therapists. They even know which day you will see a marked deterioration but it wasn't really going to happen.
But it has.
Ben has developed a very sore neck, which really moved to a different level yesterday. Worse than I thought it would be, but I now know that there is more we have to deal with. It is a burn.
A real, red, painful and ugly burn.
I could see people looking today. I knew they were because you would wouldn't you?
A child with a bald head and a hurrendous burn across his neck. They don't have to wonder anymore or guess where he has it. It is obvious he has got it but only we knew where.
I am sure people think leukaemia or brain as that is what people know about, but now they know, they can see it, it is in his throat. Do kids get cancer in their throat? Is what they will be saying. Wouldn't you?
I don't mind people knowing but the rawness of his neck shows a vulnerability now. The look of hope and encouragement that he has received have now changed now to pity.
And what goes on on the outside is what is happening on the inside. He wakes up now and vomits due to the mucus and saliva build up. This must be the mucositus they warned us about. But it wasn't going to get that bad for Ben, but now it has.
He barely swallows at all now and the infrequent top ups of feed that I was administering are now a regular occurrence and make up a part of the ever lengthy routine of dressings and medications, of flushes and mouthcare. One day it will end.
I am hard on him. I have to be. It is mind over matter I tell him. You can swallow. You must swallow. But I know he can't, not now, not really. His pain is not well controlled either but we are working through that. If his cancer and his treatment wasn't to his throat, I would definitely slip him a shot of whisky to numb the pain! I won't though, I will drink it to numb mine!
Having nursed patients having radiotherapy to the head and neck area up to three times a day, I know how bad it gets. But never once did I feel like this. When grown men were crying in pain, of course I cared and of course I always did my best to help but I never understood how they felt, how could I? I was twenty something, I had never experienced such trauma. But now I have. Now I know what it is really like.
I would take it away from Ben if I could. I would carry the symptoms for him. But even if I could, I know that I would be frightened. How pathetic.
It was a strange experience, going for my hair doing today. It was wonderful to have a few hours off but the constant anxiety of not being there was burdening. I need to be there always. I am afraid to leave him alone right now. I watch him when he sleeps, I sit with him when he tries to eat. I am never far away. I can always hear him. I have to be able to hear him.
We will get through this though, we have no choice.
My hair actually turned out quite well and if I actually had anywhere to go I would probably have been quite chuffed. At least the protonites saw a different side this evening. The fresh hair - do woman as appose to the bra - less pyjama women! It will stay nice until Chloe wees on my head in the night or until I flick sticky pain medicine all over me as I do in my sleep deprived state most evenings.
Chloe continues to drive me bananas. I tell myself it is because it is tough on her too, but really it is just because she is a little ....
Hulk slam has now been replaced. She now says mummy over and over again. I can almost see a look in her eyes that says "come on then? I will beat you!"
We visited a beautiful beach yesterday, despite the stormy weather. It was nice to be free and for the kids to play. It wasn't a typical Easter Sunday but then no day is typical here. It was lovely though. Ben was quite low in mood until he made a lovely new friend. She was fun and lovely. They played rugby and played in the sand.
He was just a normal boy for that hour, except I noticed he had socks on on the beach. What?
Anything that is remotely odd these days has to be due to chemo or the treatment or the disease. My mother of a child with cancer kicked in and I assumed he was having tingling in his feet, a common side effect of vincristine.
I told dean he may need to go to hospital. I ran over to him and nursed his toes. Are they tingling? Have you lost sensation? Is paralysis kicking in?
No!
Chloe had painted his toenails and he didn't know how to get the varnish off and he didn't want his new friend to see. Oh my flipping goodness!
So the place we visited yesterday, Ponte Vedra was beautiful. The houses enormous and the views incredible. I will retire there. In fact I would move there right now. It is a typical American street, with the mailboxes at the end of the drives. But there is nothing typical about the houses as they are similar in size to castles.
I found a plot of land though, much smaller than the majority, but ideal. After all, I need to think about the OCD consuming me and therefore the cleaning requirements!
My parents in law come here on Friday. We are so looking forward to seeing them and it will be refreshing to have new company. Ben is making lists of all the things he wants them to see and visit. Top of the list is a VIP tour for Nanny, scheduled for just after her arrival. She will be thrilled after a 14 hour trip!
It is not quite what I had in mind, but he has arranged her to have a tour of the gantry. Basically his proton machine. Tina, hold onto your hat, you are in for some real fun!!
It will be strange for them at first, just like it was for us. Seeing illness around you and watching these little fighters being led away from you for treatment. It is heart wrenching at first, but then it becomes normal. Normal for this journey anyway.
We met some new friends tonight. They are from the south of England and are market traders. The man was hilarious! Probably one of the least PC people I have come across! He told us the important fact. He was not Muslim but Sikh!
Does that matter? It doesn't matter from which walk of life you are from, you don't escape this.
It was interesting listening to his interpretation is his child's disease. Firstly it was benign. That is very important for a lot of people. Benign sets you apart from the rest, like somehow you have a better chance?
Another of my new friends, my telephone buddy, has a daughter with a benign tumour. Don't be fooled, it is by no means an easy ride. It is just a different struggle and just as scary. My telephone buddy has taught me that.
Tonights new friend didn't know what tumour his child had, although it was a long word, he told us.
He was loud, funny and totally not bothered about what anyone thought. He told us at least five times ,when we were suggesting places to visit, that he was planning to take his family to see girls on the beach wearing bikinis!
He told me that he had told his kids that the girls REALLY did wear bikinis here and he asked me to confirm that!
I thought it was strange. But on reflection it is cultural difference.
I should have offered to model one for him and his family? They wouldn't have been rushing to see it again, I can assure you!
Anyway, whatever helps you enjoy this rough ride I suppose!
I did feel for him as he told us that he had waited for this time of year to run his stalls as all the markets and car boot places were resuming trading. It must be tough. It is tough.
No work often means no income and it is not a cheap ride out here, believe me.
Importantly he made a good point. He shook Dean's hand and exclaimed "it is good to talk to other people"
He is right. We share something in common. Something that you could never imagine. There are parts that are scary, frustrating and intimidating but also parts that are enlightening, fulfilling and special.
The sun is due to shine tomorrow so that always helps. It just means that we can burn off unwanted energy by swimming or walking. So much better than eating and drinking!
Our journey continues and we are still overwhelmed by kind words and gestures. You may remember me writing that Ben had his phone taken whilst in hospital. It has not been returned but a very kind person who has read this blog has offered to sort this out for Ben. To that effect he will have a new phone by the end of the week. Thank you to that very kind stranger, he is absolutely thrilled to bits.
20 sessions of proton completed. 8 more to go and 1 further chemo to have here. We are sprinting to the finish line now.
Every day that passes brings with it a new challenge but also gives us a new experience.
We are so very fortunate and we will never ever forget this place or the incredible people we have met along they way. Sometimes you only meet people once or twice but it is a special meeting and one they will never be forgotten.
The journey isn't over yet but I am so pleased that so many of you have and continue to choose to share it with us.
The isolation is reduced because of you.
The hope is restored, when it is sometimes lost, because of you.
The fear and anxiety subsides because of you.
And most importantly Ben fights on with determination and will, with courage and with spirit.
Because of you.
Goodnight all.
Lots of love from The Carters xxx
Sent from my iPhone
When I have previously written about Ben's symptoms from the proton, the red neck area and the difficulty swallowing. I think I may have convinced myself that that was the final level, that it wouldn't get worse. But it has. So much very worse.
They do tell you, the Doctors and the therapists. They even know which day you will see a marked deterioration but it wasn't really going to happen.
But it has.
Ben has developed a very sore neck, which really moved to a different level yesterday. Worse than I thought it would be, but I now know that there is more we have to deal with. It is a burn.
A real, red, painful and ugly burn.
I could see people looking today. I knew they were because you would wouldn't you?
A child with a bald head and a hurrendous burn across his neck. They don't have to wonder anymore or guess where he has it. It is obvious he has got it but only we knew where.
I am sure people think leukaemia or brain as that is what people know about, but now they know, they can see it, it is in his throat. Do kids get cancer in their throat? Is what they will be saying. Wouldn't you?
I don't mind people knowing but the rawness of his neck shows a vulnerability now. The look of hope and encouragement that he has received have now changed now to pity.
And what goes on on the outside is what is happening on the inside. He wakes up now and vomits due to the mucus and saliva build up. This must be the mucositus they warned us about. But it wasn't going to get that bad for Ben, but now it has.
He barely swallows at all now and the infrequent top ups of feed that I was administering are now a regular occurrence and make up a part of the ever lengthy routine of dressings and medications, of flushes and mouthcare. One day it will end.
I am hard on him. I have to be. It is mind over matter I tell him. You can swallow. You must swallow. But I know he can't, not now, not really. His pain is not well controlled either but we are working through that. If his cancer and his treatment wasn't to his throat, I would definitely slip him a shot of whisky to numb the pain! I won't though, I will drink it to numb mine!
Having nursed patients having radiotherapy to the head and neck area up to three times a day, I know how bad it gets. But never once did I feel like this. When grown men were crying in pain, of course I cared and of course I always did my best to help but I never understood how they felt, how could I? I was twenty something, I had never experienced such trauma. But now I have. Now I know what it is really like.
I would take it away from Ben if I could. I would carry the symptoms for him. But even if I could, I know that I would be frightened. How pathetic.
It was a strange experience, going for my hair doing today. It was wonderful to have a few hours off but the constant anxiety of not being there was burdening. I need to be there always. I am afraid to leave him alone right now. I watch him when he sleeps, I sit with him when he tries to eat. I am never far away. I can always hear him. I have to be able to hear him.
We will get through this though, we have no choice.
My hair actually turned out quite well and if I actually had anywhere to go I would probably have been quite chuffed. At least the protonites saw a different side this evening. The fresh hair - do woman as appose to the bra - less pyjama women! It will stay nice until Chloe wees on my head in the night or until I flick sticky pain medicine all over me as I do in my sleep deprived state most evenings.
Chloe continues to drive me bananas. I tell myself it is because it is tough on her too, but really it is just because she is a little ....
Hulk slam has now been replaced. She now says mummy over and over again. I can almost see a look in her eyes that says "come on then? I will beat you!"
We visited a beautiful beach yesterday, despite the stormy weather. It was nice to be free and for the kids to play. It wasn't a typical Easter Sunday but then no day is typical here. It was lovely though. Ben was quite low in mood until he made a lovely new friend. She was fun and lovely. They played rugby and played in the sand.
He was just a normal boy for that hour, except I noticed he had socks on on the beach. What?
Anything that is remotely odd these days has to be due to chemo or the treatment or the disease. My mother of a child with cancer kicked in and I assumed he was having tingling in his feet, a common side effect of vincristine.
I told dean he may need to go to hospital. I ran over to him and nursed his toes. Are they tingling? Have you lost sensation? Is paralysis kicking in?
No!
Chloe had painted his toenails and he didn't know how to get the varnish off and he didn't want his new friend to see. Oh my flipping goodness!
So the place we visited yesterday, Ponte Vedra was beautiful. The houses enormous and the views incredible. I will retire there. In fact I would move there right now. It is a typical American street, with the mailboxes at the end of the drives. But there is nothing typical about the houses as they are similar in size to castles.
I found a plot of land though, much smaller than the majority, but ideal. After all, I need to think about the OCD consuming me and therefore the cleaning requirements!
My parents in law come here on Friday. We are so looking forward to seeing them and it will be refreshing to have new company. Ben is making lists of all the things he wants them to see and visit. Top of the list is a VIP tour for Nanny, scheduled for just after her arrival. She will be thrilled after a 14 hour trip!
It is not quite what I had in mind, but he has arranged her to have a tour of the gantry. Basically his proton machine. Tina, hold onto your hat, you are in for some real fun!!
It will be strange for them at first, just like it was for us. Seeing illness around you and watching these little fighters being led away from you for treatment. It is heart wrenching at first, but then it becomes normal. Normal for this journey anyway.
We met some new friends tonight. They are from the south of England and are market traders. The man was hilarious! Probably one of the least PC people I have come across! He told us the important fact. He was not Muslim but Sikh!
Does that matter? It doesn't matter from which walk of life you are from, you don't escape this.
It was interesting listening to his interpretation is his child's disease. Firstly it was benign. That is very important for a lot of people. Benign sets you apart from the rest, like somehow you have a better chance?
Another of my new friends, my telephone buddy, has a daughter with a benign tumour. Don't be fooled, it is by no means an easy ride. It is just a different struggle and just as scary. My telephone buddy has taught me that.
Tonights new friend didn't know what tumour his child had, although it was a long word, he told us.
He was loud, funny and totally not bothered about what anyone thought. He told us at least five times ,when we were suggesting places to visit, that he was planning to take his family to see girls on the beach wearing bikinis!
He told me that he had told his kids that the girls REALLY did wear bikinis here and he asked me to confirm that!
I thought it was strange. But on reflection it is cultural difference.
I should have offered to model one for him and his family? They wouldn't have been rushing to see it again, I can assure you!
Anyway, whatever helps you enjoy this rough ride I suppose!
I did feel for him as he told us that he had waited for this time of year to run his stalls as all the markets and car boot places were resuming trading. It must be tough. It is tough.
No work often means no income and it is not a cheap ride out here, believe me.
Importantly he made a good point. He shook Dean's hand and exclaimed "it is good to talk to other people"
He is right. We share something in common. Something that you could never imagine. There are parts that are scary, frustrating and intimidating but also parts that are enlightening, fulfilling and special.
The sun is due to shine tomorrow so that always helps. It just means that we can burn off unwanted energy by swimming or walking. So much better than eating and drinking!
Our journey continues and we are still overwhelmed by kind words and gestures. You may remember me writing that Ben had his phone taken whilst in hospital. It has not been returned but a very kind person who has read this blog has offered to sort this out for Ben. To that effect he will have a new phone by the end of the week. Thank you to that very kind stranger, he is absolutely thrilled to bits.
20 sessions of proton completed. 8 more to go and 1 further chemo to have here. We are sprinting to the finish line now.
Every day that passes brings with it a new challenge but also gives us a new experience.
We are so very fortunate and we will never ever forget this place or the incredible people we have met along they way. Sometimes you only meet people once or twice but it is a special meeting and one they will never be forgotten.
The journey isn't over yet but I am so pleased that so many of you have and continue to choose to share it with us.
The isolation is reduced because of you.
The hope is restored, when it is sometimes lost, because of you.
The fear and anxiety subsides because of you.
And most importantly Ben fights on with determination and will, with courage and with spirit.
Because of you.
Goodnight all.
Lots of love from The Carters xxx
Sent from my iPhone
Monday 28 March 2016
A little poem. Be patient please .
Be patient please, I am still catching up.
For I haven't had time to understand?
Why this has happened and what it all means, all I can do is hold his hand.
I could never know, not really, not now, what it is like staring cancer in the face.
It's threat and its power, It's pain and its grip, and the constant run from the chase.
There is a battle to be fought and a fight to be won, and pain and hurt along the way.
But one day I promise him this will be done and he will live to see brighter days.
Be patient please, I am still catching up
For I haven't had time to understand?
Why this has been given to my special boy, to deal with, why this terrible hand?
He is angry, he is sad but he is only a boy, with dreams and ambitions too.
So why is this chosen for him right now?
What do I need to do to get him through?
One day we will recognise that this was living hell but before we get there we have to be strong.
We must stay focused and firm and positive as well, for we know that this journey will be long.
Be patient please, I am still catching up
For I haven't had time to understand?
What this all means and how it will end, but together we have taken a stand.
We will fight it and beat it and show it who's boss and it will go away.
But until that time we will focus and pray for Ben's health each and every day.
When the treatment is finished and Ben feels well, we will know cancer has finished causing him pain?
And we will
Move forward never wanting to, experience this ever again.
But right now with his struggles, his symptoms, his strain, we know it is not over yet.
Goodbye cancer you have had your time and now it is you we want to forget.
You have tried your best you have tried to win and you have kicked him when he was so low.
So now disappear you have had your time. Now we want you to go.
But each day he fights you with a strength and a will, his strength is what carries him through.
And you must know by now, cruel disease, that he is fighting to beat you.
So, I won't be patient, and you won't catch us out as you never gave me time to understand?
But one thing is for sure, you can try as you like but my boy will always have the upper hand.
Goodbye cancer, you are boring us now Ben has shown you that he is too tough.
You should leave now and disappear for good, he is over with feeling rough.
Go away now and be gone for good. I am losing patience now.
Your are a pain, an annoyance and draining as well,
It is time to take your final bow.
I won't be patient, I will never understand why you had to choose him?
What did he do? He is just a boy?
Goodbye.
You will never win.
Sent from my iPhone
For I haven't had time to understand?
Why this has happened and what it all means, all I can do is hold his hand.
I could never know, not really, not now, what it is like staring cancer in the face.
It's threat and its power, It's pain and its grip, and the constant run from the chase.
There is a battle to be fought and a fight to be won, and pain and hurt along the way.
But one day I promise him this will be done and he will live to see brighter days.
Be patient please, I am still catching up
For I haven't had time to understand?
Why this has been given to my special boy, to deal with, why this terrible hand?
He is angry, he is sad but he is only a boy, with dreams and ambitions too.
So why is this chosen for him right now?
What do I need to do to get him through?
One day we will recognise that this was living hell but before we get there we have to be strong.
We must stay focused and firm and positive as well, for we know that this journey will be long.
Be patient please, I am still catching up
For I haven't had time to understand?
What this all means and how it will end, but together we have taken a stand.
We will fight it and beat it and show it who's boss and it will go away.
But until that time we will focus and pray for Ben's health each and every day.
When the treatment is finished and Ben feels well, we will know cancer has finished causing him pain?
And we will
Move forward never wanting to, experience this ever again.
But right now with his struggles, his symptoms, his strain, we know it is not over yet.
Goodbye cancer you have had your time and now it is you we want to forget.
You have tried your best you have tried to win and you have kicked him when he was so low.
So now disappear you have had your time. Now we want you to go.
But each day he fights you with a strength and a will, his strength is what carries him through.
And you must know by now, cruel disease, that he is fighting to beat you.
So, I won't be patient, and you won't catch us out as you never gave me time to understand?
But one thing is for sure, you can try as you like but my boy will always have the upper hand.
Goodbye cancer, you are boring us now Ben has shown you that he is too tough.
You should leave now and disappear for good, he is over with feeling rough.
Go away now and be gone for good. I am losing patience now.
Your are a pain, an annoyance and draining as well,
It is time to take your final bow.
I won't be patient, I will never understand why you had to choose him?
What did he do? He is just a boy?
Goodbye.
You will never win.
Sent from my iPhone
Sunday 27 March 2016
Saturday 26 March 2016
Day 35/36
Ben continues on despite some side effects of both the proton and the chemotherapy. It really does drain the life out of him but he carries on in true Ben style. Never grumbling and always fighting.
He is quite low in mood now and he really misses his friends and home. That hasn't been helped by having his phone stolen whilst in his hospital bed. What kind of person steals from a child, yet alone a child hooked up to chemotherapy, who has little comforts to enjoy right now. Well I know what type of person it is. One who has never had to experience what Ben is experiencing and one who's philosophy means that they feel that they are owed something out of life. The person who stole from my sick child will never read this as they wouldn't care but someday they will get their punishment.
It doesn't stop us though. It is a little thing in the grand scheme of things. A phone can be replaced. We don't dwell.
Since coming out of hospital Ben has continued to battle the side effects. He has been eating quite well and enjoyed a night out with new friends last night. It was great watching these children, these fighters, enjoy their social interaction and just generally having fun. It was great to socialise with their parents and laugh as if we were just a normal group of friends. But there was and is nothing normal about this experience or this journey. But you do normalise things, without knowing and subconsciously. You just fall into a new way of life and a new routine. There is no choice, we have no choice.
One of our new friends has finished her treatment and is now finishing the last few days of her trip in Orlando with her mum. She is the same age as Ben and is so lovely. Although she doesn't have cancer, she has a problematic tumour which throws of cysts. She has had such a struggle and continues to fight on. She has the most beautiful hair and always smiles. Her mum has been my evening telephone buddy. For those who know me, you will know that when I fancy a chat, boy do I fancy a chat! She and I have shared many a story over the last couple of weeks. They are our stories and not for sharing but they have helped. They have normalised evenings that often seem so long and draining. We wish our new friends all the best.
My Jacobs cream cracker friend continues to make me laugh. We share a lot in common, in particular our ever emerging grey roots! Well, not long for me, I am braving the hairdressers on Monday. Two hours without the children, oh my flipping goodness! I am so excited. Even if my hair turns green I will still have not had to administer hands on care, deliver enteral feeds or gastrostomy care or smacked bottoms!
Guess who gets what?!
We are going out again tonight with new friends. Rollers are in and nails painted. What else do you do on a cloudy day in Florida?
I still miss mum. It has been a week since she went home. When I speak to her I know she misses being part of this journey too, but life must continue for others.
The day after she got home, her father, my grandfather died. We had never had a close relationship but he was her dad. I wish that I could have been there to support her. But I couldn't, I had no choice. The funeral will take place when we are here so she will be in my thoughts, that is all I can do. Moments like these you realise how far away from home you are. I hope her dad will look down on Ben and help to keep him safe and well. Any belief must help?
Dean has always struggled with the way that my family talk about and deal with death. He thinks we talk about it as if we were talking about what we were going to have for tea. We don't, but it is our way. Everyone copes differently. No one should be judged. In our family right now though, it is hard to find anything as terrible as what Ben is going through and therefore how do you stretch your emotions to deal with anything other than Ben. I can't. I don't have the energy or the will to share my emotions with or about anyone or anything else. That's is not because I don't care, of course I care. He just needs my energy. He needs everything I have to get him through this. He will get it. Anything he needs I will give him. Well, anything I am able to. I can't take this away but I can help him in any way possible.
I have been expecting my Grandma to die whilst we were here. In fact I have been expecting that for the last 2 years. She has been ill, she is a shadow of her former self. She was a strong character and now in the grip of dementia her strength is presented as being nasty. She may have always been nasty, inwardly. Who knows?
She is my dads mum but my mum visits her often. She was very cross that mum came here. Mum explained that she was coming to help us and to help look after Chloe. Grandmas response was "can't they just put her in a home?"
She didn't mean it ( I don't think!)
She would be mortified. Life is cruel that it changes people in such a way that they become unrecognisable. Is Ben unrecognisable to you? Has he changed? Does he look different? I don't know. I see him every minute of every day. He must have though. How could he not have? Would you? Wouldn't we all?
I hope Grandma doesn't die when we are here. I want to be there. I want to be with my family.
I am running out of time here. I was going to use this time productively. I was going to be bronzed and beautiful!
Instead, I am continuing to expand, I haven't been to the gym in nearly 2 weeks and getting whiter as the Florida storms continue.!
Oh well, four weeks to go so any miracle is possible! It will need to be a miracle as well, as a nice friend pointed out yesterday on FaceTime when she asked me "what is wrong with you? "
Followed by "You look like Marge Simpson !"
The cheek of it! With friends like that....!!
The good thing,though,here is that the clothes sizes are different than at home. So you can happily buy a 12 and nicely slip into it. You feel good and pretend that you really are still in that twelve. You forget that a European 12 is actually a 14 ( and a bit more!) you feel better. It doesn't matter what the factual accuracy is. The label says a flipping 12. I am therefore a 12. There is no debate, no question. That is what the label says!
My brain is mushy. I can't really think that well now. I am not intellectually stimulated. I talk only about proton or chemo or food or drink. I don't think, things just happen. I need stimulation.
Musical beds is the normal in our house now. I never wake up in the same place as I went to bed. One of us needs to sleep with Ben. The inflammation in his throat is apparent now and his dry throat contributes to making his breathing more noisy. He has an irritating cough and he is uncomfortable. You can see that now. But he won't tell me. He won't let me help him. I have every medicine for every occasion but he refuses. He is afraid. If he admits it, it is really happening.
Dr Dreamy was pleased with his progress though this week. He wasn't as pleased with mine though as he commented on the fact that my skin would have aged a decade by sitting in the sun! Cheeky! He actually kicked us out of his clinic this week as we were taking the pee! Not in a nasty way but more of a "get yourselves outa here" kind of way!
"But Dr what are we to do to help Ben and his proton reaction?"
You guessed it!
"Keeeeep doin wot your dooin"
And again, the advice from the worldwide, renowned expert continues to blow me away.
Dean reckons he is just some guy that wears a lab coat. He may have a point!
Chloe continues to be Chloe. Her new hobby is to fill up her sandcastle buckets with water from the fridge. She then carries it onto the balcony and pours it everywhere! I don't stop her. After all it is tough for her , boring really. She continues though to throw spectacular tantrums. She is in trouble for being agressive. She must stop shouting at me. So yesterday she developed a new technique. Rather than screaming at me, she stared at me and looked right into my eyes. Very calmly she said "hulk slam".
Ben was in hysterics. He understood her and told me that she was just explaining, in a very polite and non aggressive way that she would like to hulk slam me.
My precious little doll!
Life goes on and the fight continues. I enjoy writing this blog but I can't wait until the final day that I write. That means the end.
I have no idea what the ending is for this story. I don't choose this ending. It is chosen for us.
It will be good though. It has to be. There is no other end that can be contemplated.
Maybe I run off into the Florida sunshine with Dr Dreamy !!??
Only joking!
I couldn't run!
The end will be that Ben will finish his treatment and life will resume. School, work, planning, enjoying, fulfilling dreams and ambitions. Life. Life as we knew it, life as we liked it.
It is funny really. No one ever expects this. I have had many a bubble burst in my life but never like this. Never the bubble that kept things ok, that kept my children safe and well. Nothing this damaging. Nothing like this. But our turn is nearly over isn't it? We are about to blow up our new bubble and be safe and well and happy again. It won't be long.
What I do know is that it will never be the same.
Nothing will ever be taken for granted.
Nothing will ever beat us. Not now. Not ever.
I love it here in Jacksonville. I can see now why many people don't want to leave. Life is different. The people are amazing. People take notice and they care. Never a day passes when someone's act of kindness doesn't make me cry or go fuzzy. I have never used the word fuzzy. I didn't really relate it to anything for me until a reader of this blog told me that seeing Ben's smile made her go fuzzy. I get it now. I get what it is to feel fuzzy.
So the journey,so far, continues to drain and to sap every bit of energy. It continues to shock and excite. It continues to encourage and to please. It continues to scare and to hurt. But it continues. That is what is important. We will find our ending. Ben will have his happy ending.
Then life will resume.
The bubble will be blown back up again. We will continue. There is no choice. We have no choice.
So from the Carters - have a well deserved long weekend and a very Happy Easter.
Sending love across the pond as always. Your friends xxxx
Sent from my iPhone
He is quite low in mood now and he really misses his friends and home. That hasn't been helped by having his phone stolen whilst in his hospital bed. What kind of person steals from a child, yet alone a child hooked up to chemotherapy, who has little comforts to enjoy right now. Well I know what type of person it is. One who has never had to experience what Ben is experiencing and one who's philosophy means that they feel that they are owed something out of life. The person who stole from my sick child will never read this as they wouldn't care but someday they will get their punishment.
It doesn't stop us though. It is a little thing in the grand scheme of things. A phone can be replaced. We don't dwell.
Since coming out of hospital Ben has continued to battle the side effects. He has been eating quite well and enjoyed a night out with new friends last night. It was great watching these children, these fighters, enjoy their social interaction and just generally having fun. It was great to socialise with their parents and laugh as if we were just a normal group of friends. But there was and is nothing normal about this experience or this journey. But you do normalise things, without knowing and subconsciously. You just fall into a new way of life and a new routine. There is no choice, we have no choice.
One of our new friends has finished her treatment and is now finishing the last few days of her trip in Orlando with her mum. She is the same age as Ben and is so lovely. Although she doesn't have cancer, she has a problematic tumour which throws of cysts. She has had such a struggle and continues to fight on. She has the most beautiful hair and always smiles. Her mum has been my evening telephone buddy. For those who know me, you will know that when I fancy a chat, boy do I fancy a chat! She and I have shared many a story over the last couple of weeks. They are our stories and not for sharing but they have helped. They have normalised evenings that often seem so long and draining. We wish our new friends all the best.
My Jacobs cream cracker friend continues to make me laugh. We share a lot in common, in particular our ever emerging grey roots! Well, not long for me, I am braving the hairdressers on Monday. Two hours without the children, oh my flipping goodness! I am so excited. Even if my hair turns green I will still have not had to administer hands on care, deliver enteral feeds or gastrostomy care or smacked bottoms!
Guess who gets what?!
We are going out again tonight with new friends. Rollers are in and nails painted. What else do you do on a cloudy day in Florida?
I still miss mum. It has been a week since she went home. When I speak to her I know she misses being part of this journey too, but life must continue for others.
The day after she got home, her father, my grandfather died. We had never had a close relationship but he was her dad. I wish that I could have been there to support her. But I couldn't, I had no choice. The funeral will take place when we are here so she will be in my thoughts, that is all I can do. Moments like these you realise how far away from home you are. I hope her dad will look down on Ben and help to keep him safe and well. Any belief must help?
Dean has always struggled with the way that my family talk about and deal with death. He thinks we talk about it as if we were talking about what we were going to have for tea. We don't, but it is our way. Everyone copes differently. No one should be judged. In our family right now though, it is hard to find anything as terrible as what Ben is going through and therefore how do you stretch your emotions to deal with anything other than Ben. I can't. I don't have the energy or the will to share my emotions with or about anyone or anything else. That's is not because I don't care, of course I care. He just needs my energy. He needs everything I have to get him through this. He will get it. Anything he needs I will give him. Well, anything I am able to. I can't take this away but I can help him in any way possible.
I have been expecting my Grandma to die whilst we were here. In fact I have been expecting that for the last 2 years. She has been ill, she is a shadow of her former self. She was a strong character and now in the grip of dementia her strength is presented as being nasty. She may have always been nasty, inwardly. Who knows?
She is my dads mum but my mum visits her often. She was very cross that mum came here. Mum explained that she was coming to help us and to help look after Chloe. Grandmas response was "can't they just put her in a home?"
She didn't mean it ( I don't think!)
She would be mortified. Life is cruel that it changes people in such a way that they become unrecognisable. Is Ben unrecognisable to you? Has he changed? Does he look different? I don't know. I see him every minute of every day. He must have though. How could he not have? Would you? Wouldn't we all?
I hope Grandma doesn't die when we are here. I want to be there. I want to be with my family.
I am running out of time here. I was going to use this time productively. I was going to be bronzed and beautiful!
Instead, I am continuing to expand, I haven't been to the gym in nearly 2 weeks and getting whiter as the Florida storms continue.!
Oh well, four weeks to go so any miracle is possible! It will need to be a miracle as well, as a nice friend pointed out yesterday on FaceTime when she asked me "what is wrong with you? "
Followed by "You look like Marge Simpson !"
The cheek of it! With friends like that....!!
The good thing,though,here is that the clothes sizes are different than at home. So you can happily buy a 12 and nicely slip into it. You feel good and pretend that you really are still in that twelve. You forget that a European 12 is actually a 14 ( and a bit more!) you feel better. It doesn't matter what the factual accuracy is. The label says a flipping 12. I am therefore a 12. There is no debate, no question. That is what the label says!
My brain is mushy. I can't really think that well now. I am not intellectually stimulated. I talk only about proton or chemo or food or drink. I don't think, things just happen. I need stimulation.
Musical beds is the normal in our house now. I never wake up in the same place as I went to bed. One of us needs to sleep with Ben. The inflammation in his throat is apparent now and his dry throat contributes to making his breathing more noisy. He has an irritating cough and he is uncomfortable. You can see that now. But he won't tell me. He won't let me help him. I have every medicine for every occasion but he refuses. He is afraid. If he admits it, it is really happening.
Dr Dreamy was pleased with his progress though this week. He wasn't as pleased with mine though as he commented on the fact that my skin would have aged a decade by sitting in the sun! Cheeky! He actually kicked us out of his clinic this week as we were taking the pee! Not in a nasty way but more of a "get yourselves outa here" kind of way!
"But Dr what are we to do to help Ben and his proton reaction?"
You guessed it!
"Keeeeep doin wot your dooin"
And again, the advice from the worldwide, renowned expert continues to blow me away.
Dean reckons he is just some guy that wears a lab coat. He may have a point!
Chloe continues to be Chloe. Her new hobby is to fill up her sandcastle buckets with water from the fridge. She then carries it onto the balcony and pours it everywhere! I don't stop her. After all it is tough for her , boring really. She continues though to throw spectacular tantrums. She is in trouble for being agressive. She must stop shouting at me. So yesterday she developed a new technique. Rather than screaming at me, she stared at me and looked right into my eyes. Very calmly she said "hulk slam".
Ben was in hysterics. He understood her and told me that she was just explaining, in a very polite and non aggressive way that she would like to hulk slam me.
My precious little doll!
Life goes on and the fight continues. I enjoy writing this blog but I can't wait until the final day that I write. That means the end.
I have no idea what the ending is for this story. I don't choose this ending. It is chosen for us.
It will be good though. It has to be. There is no other end that can be contemplated.
Maybe I run off into the Florida sunshine with Dr Dreamy !!??
Only joking!
I couldn't run!
The end will be that Ben will finish his treatment and life will resume. School, work, planning, enjoying, fulfilling dreams and ambitions. Life. Life as we knew it, life as we liked it.
It is funny really. No one ever expects this. I have had many a bubble burst in my life but never like this. Never the bubble that kept things ok, that kept my children safe and well. Nothing this damaging. Nothing like this. But our turn is nearly over isn't it? We are about to blow up our new bubble and be safe and well and happy again. It won't be long.
What I do know is that it will never be the same.
Nothing will ever be taken for granted.
Nothing will ever beat us. Not now. Not ever.
I love it here in Jacksonville. I can see now why many people don't want to leave. Life is different. The people are amazing. People take notice and they care. Never a day passes when someone's act of kindness doesn't make me cry or go fuzzy. I have never used the word fuzzy. I didn't really relate it to anything for me until a reader of this blog told me that seeing Ben's smile made her go fuzzy. I get it now. I get what it is to feel fuzzy.
So the journey,so far, continues to drain and to sap every bit of energy. It continues to shock and excite. It continues to encourage and to please. It continues to scare and to hurt. But it continues. That is what is important. We will find our ending. Ben will have his happy ending.
Then life will resume.
The bubble will be blown back up again. We will continue. There is no choice. We have no choice.
So from the Carters - have a well deserved long weekend and a very Happy Easter.
Sending love across the pond as always. Your friends xxxx
Sent from my iPhone
Wednesday 23 March 2016
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
Dear Benjibob
Dear Ben
This time last year you were full of life and enjoying your time with your friends. We went on holiday to Dubai and you had a fantastic time at the waterpark. You will be like that again soon.
In September, our world changed when you went into the hospital. The day that you had your first operation to remove what we thought was a nodule on your vocal cord was terrifying. What came next was even more frightening.
In September you were referred to a specialist team to have the lesion removed. We were assured over and over again that the lesion was benign and we reassured you of that too. You will remember that two weeks after your first surgery your airway obstructed and we ended up in A+E and were then blue lighted into London. Do you remember? It was the most frightening day of my life.
From that point the journey changed direction. No one knew what the lesion was but we had our suspicions. The Doctors called it a tumour, but again assured us it wasn't cancer. How could it be? Children don't get cancer in their throat. That's what we were told.
Your life changed Ben, as did all of ours. Scans after scans and various tests. Chasing results and praying. Surgery every two weeks as the tumour just kept growing. In between all of this, you went to school. You still liked life and you continue to do so.
You have asked me and Daddy so many times why this has happened to you and we truly do not know. You have cried and told us is not fair. It is not fair, you are completely right. But we can't change it and you know that.
You have been through so much, dragged on train after train to the hospital. Had scans, operations to have your hickman line inserted and your gastrostomy tube put in. You have completed 7 cycles of chemo and dealt with the worst side effects imaginable.
You have not complained, not really. You have dealt with this head on and with dignity and determination. You ENT Doctor always comments on your strength and you like that. He is right, you are strong.
We finally received our diagnosis in December. You have Rhabdomyosarcoma of the larynx. You are lucky they tell us as it is localised and hasn't spread. You are lucky because the aim is to cure your cancer. You are lucky because the type of Rhabdo. that you have is Embryonal and has a better outcome.
I can use technical terms now with you Ben as you understand them all and in fact use them yourself.
With your diagnosis came the change to your treatment plan and the need for radiotherapy. The Doctors wanted you to have Proton Beam therapy in Jacksonville and that is where we brought you and here were are.
Ben, your journey has been incredible. You have dealt with each hurdle with a mature and sensible approach. I am proud of you every day. I have seen you very very frightened, only a couple of times on this journey Ben and believe me you have every right to be afraid and every right to be cross.
You aren't though, letting this beat you. You still do bonkers things and we have our fights. You still know which buttons to push!
Ben, you have raised a fantastic amount of money for your charity and have such a kind heart. When I watch you with the other children that have cancer, you would never know that you are affected too. You care for others. You are so very kind.
Ben, you make me proud of you every minute of every day. I am with you always through this and throughout your life.
Your strength inspires me and many other people.
You are an amazing little boy who is growing into a lovely young man.
I love you Ben and I always will.
Keep going Darling and keep fighting, you are almost there.
By the summer you will be a happy and lively boy again. I can't wait to see you swim and play football again. I can't wait until I see you playing with your friends again and getting up to mischief.
You are my world
Love you always Ben
Mummy xxxxxxxxxxxxxxxxxxxxxxxxx
Sunday 20 March 2016
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
Sent from my iPhone
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
Sent from my iPhone
Saturday 19 March 2016
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
Sent from my iPhone
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
Sent from my iPhone
Friday 18 March 2016
Enjoying a lovely desert bought by a total stranger!
10 minutes later she returned wishing us a lovely evening as our bill had also been taken care of!
There is no telling how kindness will present x
Sent from my iPhone
Thursday 17 March 2016
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
Sent from my iPhone
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
Sent from my iPhone
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