I’ve wanted to write this post for months but I resist because its basically offloading the bullshit onto everyone reading it and I will struggle to write this in any sort of positive tone!
First of all, if anyone ever uses the word NOW… they don’t care. There is a underlying message that says ‘are we still going on about that’. Listen out for this and you won’t be able to un-hear how much people don’t care. Are you ok now? What’s the matter now? Is she over he ex now?
Yes I do love to overanalyse word choice but its the best way to subconsciously say, “I have zero patience and interest but I’m going to appear to care.” Take the now away, and you might sound like you care but you can’t say now in a meaningful tone.
The first time I overthought this was after Ted was born somebody asked my mom, “is Jo ok NOW?” Aka, is she over the miscarriage now that she has a baby? And yeh, lets not get into that but do you see my point? Now trivialises somebody’s problem as if to say, ‘come on now, lets shut up about this now…’ can you hear that tone?
So in answer to some peoples thoughts and questions…
Ted is not ok NOW.
Ted is a little fighter, he’s braver than anybody I know. In fact I don’t want to know half of the people I know anymore because of Ted. Ted has taught me a lot about what it means to keep dancing and I’m not going to contradict my theories by trivialising some peoples problems but I don’t see a lot of things as problems anymore. I don’t even cry anymore. The bar has been set far too high!
(Still my favourite first world yummy mummy problem is parent and baby spaces. If you are genuinely pissed off by this please think yourself very lucky that this is the method in which your day is ruined. I felt like this before Ted by the way but it is amplified now.)
Ted is better than he was at the start of 2019 but we aren’t even a third of the way through treatment and end of treatment isn’t even the end.
I have spent many days this year thinking Ted is going to die. I have sat in bed with him saying, “Please don’t die Ted.” This isn’t being dramatic this is genuine. We started off with suspected sepsis and septic arthritis, surgery and then when he wasn’t getting better the bullshit cancer journey began.
He did react very well and yes that is ‘good’ but its just shit that he even had to react to it. In August we reached maintenance. That means three years of treatment. So August 2022 will be the end of treatment.
I think because he got to 0% and remission people think its all done and dusted. It’s not even close.
The January to August was the intense bullshit treatment where they had to just beat the cancer out of him and thats why he couldn’t walk for a while and lost his hair twice.
Now we’re still in bullshit but just less intense. We used to go to hospital on average once a week and community nurse once a week. Now we have once a month and community nurse every 2 weeks.
You’re probably thinking its not ‘that bad’. Ok yeh once a month is ok, if it goes to plan which it often doesn’t. He also has lumbar punture under anaesthetic every 12 weeks and MRI in January again under.
Then he has daily chemo at home that we give him through his NG tube in his sleep. Weekly chemo at home that we give. Weekend antibiotics every weekend twice a day. Then on his monthly hospital visits he has IV chemo.
Yeh so it’s not the ideal lifestyle but it is manageable but the other thing is if he gets a temperature at any point before August 2022, he has to go to A&E and put on IV antibiotics for two days. So where a standard snot or sick bug is a calpol and bed job for normal kids, it wipes us out for at least 2 days, sometimes a week so in that time we have to cancel everything! Which could literally happen anywhere, any time so every event is on edge.
It’s like we’re running a marathon where the end is August 2022 and on the way we’re just trying to run past hurdle events like birthdays, Christmas, day trips just so we can say phew we got past. We don’t want any rest stops along the way or stop at each hurdle I just want to run past and say yep here’s your present, here’s your card, theres a selfie on a train, quick c’mon lets get to 22!
So we just want to get out of this shit hole because the reason he has treatment for so long is to stop it coming back. If we get past the first year it makes it highly unlikely to come back so August 2020 is like this massive milestone. If it comes back its not even that the bullshit starts again, its a new fresh hell that I don’t even want to think about.
And then… when we finally cross the August 2022 finish line… if Brexit and Boris don’t fuck the NHS at the expense of cancer kids… if we get there… he is not classed as cured until August 2027! Ted will be 10! I’ll be 41!
So Caroline and Louise if you’re reading this we’re definitely doing NYC for our 40th’s!
So in summary, Ted is not ok NOW! Yes he is doing well, he is wonderful. I am a badass fighter that can cope with a lot of shit, but I wouldn’t say things are ok. Bullshit is my favourite word to describe 2019!