Today can literally suck my hairy balls. Ok so not literally, but it still can.
I have had what feels like 3 hours sleep in the last 3 weeks. Topped off by the obvious work, financial worry, job worry, feeling like I’m being torn between whats best for Ellis, feeling torn between my children, trying to stop myself crying in random places because that shit is becoming a habit and trying to work out whether I’m going insane or whether I even was sane in the first place.
I have had about 3000 phone calls today, all with different information, different appointments and different parts of the fucking world so it seems. All of which I have now completely forgotten about.
Going back to yesterday, his appointment at UCLH to check his kidneys. We had to travel up by train just the two of us, which I was dreading. I’m not very good at adulting at the best of times, so I was genuinely worried we would end up in Scotland or something. But we did it. One exhausted mum on the edge of crazy and one not quite teenager, hobbling around London on crutches he can’t use.
His GFR (Kidney check) was ok and went as expected. We spent most of the time eating hospital food (or not in my case, because gluten free food in a hospital is rare to say the least) and playing ‘guess the name’ of the people walking past the window. In a weird way it was nice to get quality time with the boy, as he hates anything outside of his bedroom that doesn’t involve the xbox.
In the afternoon, we were met by a fertility clinician from a trust in Oxford. They spoke frankly and openly to us both about the chemo being so aggressive that its quite possible he will be left infertile. So on Monday, he will be having an operation to preserve some sperm for when he is older. Amazing.
He also starts Chemo Wednesday, so he will be staying in hospital from Sunday-Sunday. We have decided that logistically, it’s best for his Dad to go up and stay the week with him. I have never felt so torn in my whole life. I feel sick to my stomach. Every fibre of my body is aching for me to go, but I am needed here too, for the girls. Lily is 10 and she’s not coping very well with it all. She asked me, through tears, if Ellis was going to die like Grandad Mike and Grandad Joe (both my grandads who we lost last year to cancer). By far that was the hardest conversation I have ever had. I am having to separate ‘want’ and ‘need’. I ‘want’ to go up with him, but at the same time I don’t ‘need’ to. His Dad is more than capable. They will be fine. Me on the other hand, will be a wreck.
Ellis told me he is excited to go because there is an xbox on the ward and he will be fed. Simple things. His positive attitude is worrying me now. He’s been super upbeat and positive about every single thing so far, joking to the consultant that he won’t be the only person in this house with no hair, when he loses his for chemo (for those who don’t know, my husband is follicly challenged lol) I am almost waiting for a more human like response from him in the form of a breakdown.
I’m not even the one who is ill this time, so I feel like a fraud for moaning. But this is hard. I am not sleeping, not eating and look homeless most of the time.
I’m going to allow myself to have today, it’s been written off as a failure anyway. Fuck you, Friday. But tomorrow will be better.
I am going shopping tomorrow for last minute chemo bag things, including new pants because who doesn’t like new pants?! Then get my eyes tested because apparently I can no longer see, then dinner with the little one, my husband and two amazing friends. She is pregnant so as I good friend, I will be having her share of wine. Be rude not too, right?!
If I have learnt anything in the last 6 years it is that after a shit day, is a new one. Maybe it’ll be better, maybe it won’t. But just knowing it’s new is a start.