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