THIS POST WAS WRITTEN ON Saturday 20th February 2016.
I am 50% exhausted, 50% pissed, 10% fed up. No I have not lost my goddamn mind, although it does feel like it a bit lately, I know that adds up to 110%, because I am 110% over all this crap right now. It is a constant barrage of shit that I am tired of, that continues to just push me over the edge a little more and disappoint each day, and that combined with the supporting, negative and persuasive raging hormones, it all feels too much for one person to deal with today, or for me to deal with at least.
Since we returned home it has been appointments, appointments, appointments. I think I have only spent a maximum of two nights in a row at home without having to go back up to London for more hospital visits. Sleeping in my own bed seemed like such a simple pleasure before all this, something that I never really even thought about, but now it’s all I want. I am so grateful to Clic Sargent for providing Paul’s House, which is such a wonderful facility that means we don’t have to travel ninety minutes to get to UCLH and then ninety minutes back home each time I have an appointment, but the bed there is not my bed, and it is not home.
Pauls House has made all this and the constant stream of appointments bearable and I don’t know how I would have managed it, mainly because of the incontinence which can be really bad some days making travelling very difficult and nerve wracking, without it there, five minutes from the hospital, offering me a place to stay each night.
But the bed there is not my bed and, like I said, it is not home.
The overriding feeling is that I want to be left alone. Nothing I’m having done is particularly intrusive, I am not feeling more physically ill than I can handle – whilst my back is very sore and I am finding it difficult to walk today, I can deal with it, and my stomach is no worse than normal. But what it is is constant. And annoying. AND CRAPPY. I am tired of people covering my stomach in goo, scanning my stomach and telling me about how my egg harvest is good really. Oh like I shouldn’t be disappointed by this lowered expectation because at least it’s something. Well yes it something but that doesn’t dismiss the fact that, actually, I am completely pissed off, sad and exhausted. All I want to do is go home and lock myself in my room away from all this.
Where is the time for myself? Every fricking time I look forward to something it is changed, put off or cancelled. Every positive I am given feels like it is turned around and, as I begin to raise my hopes up, that positive, that tiny remnant of hope, falls apart and I flinch, winded from it all. I feel the shock and surprise hit me in the face like that frozen snowball you don’t see coming, a sharp mixture of ice, snow and grit – that snowball that feels almost a little personal. And as these things upset me, I begin to feel my eyes prickle and my fists clench around my crutches, not from the tight back pain this time but from the stress and the bullshit sarcoma, so that my knuckles pop and whiten. I feel angry and pissed off at myself for building myself up and at the world around me for taking me back apart.
I really just want to be left alone to wallow in a furious black hole of self absorption, self pity, and self loathing, without having to think onwards and upwards, today is a new day. Yes each day is new but the appointments are getting old. I’m just tired of it all.