The Masterplan and the making of Pinhead

Sorry for the multiple posts in rapid succession everyone. I'm trying to catch up to where we are at now so that I can just start making them on a Monday about the week before, whilst we are at the hospital all day. 

So where are we at now? Ahh yes...Pinhead. The scary motherfucking radiotherapy mask. For them to pinpoint the exact spots that they need to treat, the mask is created for each patient, to hold them tightly in place, ensuring no movement, making sure there's as little damage to healthy areas as possible. 

The process. Another beautiful, warm, friendly nurse takes Thomas and me into a room with a bed in the middle that goes up and down, some medical stuff and a little oven-type thing. 

Thomas lies on the bed and gets raised to their workable level. First, they take a sheet of flat plastic that's head and shoulder shaped. (think target practice head and shoulders) They pop it in the oven to soften the bitch up. Then it's placed over his head and chest area and she moulds it to his face. 

Thomas is, shock horror, unfazed and handling it all really well. He has to lie really still so that it's as tight as possible. Luckily, he's the best at closing his eyes and zoning out, so that's what he did. 

Gobshite over here? Not so much. Im just not ok with any of this and I dont think I ever will be. Its not a painful or intrusive procedure but watching him get it done breaks my heart. The tears are streaming down my face but I'm not making a sound. The nurse, whilst still talking Thomas through everything she's doing with his mask, is also mouthing "Are you ok?" at me. I'm nodding and mouthing "yeah I'm okay, thank you" back at her. And the smile she gave me said - I see you, and I understand. Again, different levels of care in these departments ❤️

It's fairly quick for it to be done and I've sorted my shit out before he's up and gettin dressed again. Home-time for another day. I'm in awe of him. I wish I had a 3.5 of the steely resolve he has. I'm a bowl of custard in comparison. 

Thomas on the way out - "The mask reminds me of the guy from Hellraiser - Pinhead" And so, it shall be affectionately know as Pinhead from this day forth! We even get to bring the creepy bastard home with us at the end, when hes finished playing his part in making Thomas better. 

The Masterplan - 

Begin Treatment November 3rd - Last Day of Treatment - December 12th. 

Those dates are non-negotiable. Thomas MUST have his 30 doses of radio within that window. He can't miss a single dose. He can't just miss one and then add it on at the end, it doesn't work like that unfortunately. He did ask today "could he not just have a week's worth in one day..." 😶 The nurse said "you'd be a bit crispy Thomas" 😂 Best not do that then...

Chemo. That is spread out over 6 weeks, receiving it every Monday. It's hard for him to know what's making him feel shitty when he's receiving both treatments, but he thinks the chemo was what made him feel sick. He also said it's manageable with the anti-sickness medication that they give you on chemo day, (along with a mouthwash, 3 days' worth of steroids, 3 days' stomach protection pills, some milder anti-sickness and some cream for his neck. (He will get strong pain relief once he needs it too.) 

Radiotherapy. Monday to Friday. Both sides of his neck. The effects of that won't really become apparent until about week 2 or 3 but it is making him more tired already and he feels a bit 'out of sorts'. But no pain as of yet. A shit part of Radio is that even once you've had your final dose, the effects keep on escalating. He will get a 10-14 day period after his last day of treatment, where it will continue to kick fuck out of him. Meaning, this Christmas time, he will be feeling the worst he's going to throughout it all. We know it won't be the same this year. We will make it as special as it can in the circumstances but I'd be lying if I said I wasn't really sad he won't get to enjoy it like he usually would. But it's worth missing one Christmas to be here for 40 more ❤️

After the 10-14 days, it should (🤞🏼🙏🏼💪🏻) be all about recovery. Resting and building back up his strength each day at a time. And come March, they will rescan him again to see how it's all gone 🥹🤞🏼

It's going to be a rough ride, we know this. But it's necessary. He has too many of us who love him and need him to be here for a long time yet. He's got to fight. And I will be at his hip throughout, reminding him who the fuck he is, loving him harder when he wobbles and doing anything to make it as easy as it can be 🥲

Next stop - Week 1 😭