Got to say, it’s easier to write when things are going well – I find it quite hard to get my writing mojo on when I’m feeling miserable or tired or unhappy or in pain and that does take up quite a lot of my time at the moment. I know tales of woe are boring to read so I just don’t write.
Anyways, I looked at the last entry I did and recognised that it was written from a place that’s a bit darker than the one I’m in right now, so I guess its time for an update.
I’ve now had 5 of the 18 chemo sessions I’m scheduled for and they do seem to be having an effect. The pain and oedema are pretty much gone and the lump by my collarbone on the left side has shrunk down considerably. I’ve been off work (Easter Holidays) these last two weeks which has meant I’ve been able to get a bit of rest – still not sleeping very well (or very predictably – some nights awake all night, some nights out for the count, despite exactly the same routine/drugs each night) but trying to balance it with some naps during the day if I feel like it.
Had a surgical pre-assessment last week for a Vocal Chord Implant, which should strengthen my voice and might even mean that I can sing again. The implant lies alongside the paralysed part of my vocal chords, meaning that the working side has less distance to travel to make a connection. It will last about 18 months, by which time enough scar tissue should have built up around the implant for that to do the job instead. It all sounds very exciting and I’m really hoping I’m not pinning too much on it. The ENT Consultant was hopeful that he could get a good result so I guess we’ll just have to wait and see, huh? One other thing that came up in the assessment was that I’m not imagining it when I say that there’s something wrong with my eye. Turns out the nerve damage on the left side of my head which fucked up my voice, has also fucked up a nerve in my left eye. My eye droops a bit now and makes me look like Donald Pleasance, cos that’s a good look. There’s nothing I can do to fix it, I just have to accept that I look weird now.
My hair is falling out. I would just clipper it off (like I did last time) but, because I haven’t been at school for a couple of weeks, I feel like I need to go back tomorrow ‘with hair’ , and then get my story straight with the students before I do the deed. With ‘Special Ed’ kids there’s always a sense of covering all eventualities before trying to explain something – they are hyper vigilant all the time and you really do need to be prepared for anything and everything that they might do or say. Also, their actual mental capacity to understand what is going on for me right now is extremely varied from pupil to pupil and I cant help thinking I’m going to have to have the same Groundhog Day experience for the foreseeable future with some of them. I don’t know if I really want to go through that. One girl has asked me “when is your voice going to be better?” every day since before Christmas. I don’t want to hear her say “When is your hair going to grow? When are you not going to have cancer?” for the next God knows how many months.
I feel sad about losing my hair. I can’t explain it properly though. I feel like I don’t want to hide under scarves and hats and turbans like I did before, and I wont be wearing a wig, but I just cant face all the eyes on me all the time and the questions and the whispering and the sympathy and the fighting the urge to shout FUCK OFF AND LEAVE ME ALONE. Just had a little spontaneous cry about that but, funnily enough, it didn’t change anything.
Things on the homestead are still as horrible and desperate as they were. Kryptonite has gone quiet on the saucy messages front which makes me think I have either crossed a line somewhere (not intentionally – in fact I’ve done my best to not encourage him at all) or he’s decided he doesn’t like me that much after all. Pretty sure that cant be true as, really, who wouldn’t find a bald, cock-eyed, squeaky voiced, wonky-boobed, perma-crying miserable old bitch a bit of a catch? I would like to say that this is the reason why my husband doesn’t find me desirable but he hasn’t looked lustfully at me for much longer than this shit has been going on so my current state of pig-ugliness is clearly just the icing on the cake.
Adding insult to injury this week has been easy, Diaryland. L managed to get himself a little part time work, doing maintenance and odd-jobs for some children’s’ day care centres. First day on the job (Wednesday) he fell off a ladder whilst re-felting a shed roof. Broke three ribs and punctured his lung so he had to spend a couple of days in hospital. They put him back on Cardiac HDU, presumably so they could keep an eye on him/his S-ICD so it was kind of weird to be hanging about up there again, having spent so much time there last year. I sat in the Quiet Room til around midnight on Wednesday night while they tried to put a drain in his chest. I was about 200 yards away down a corridor and around a corner but I could still hear him yelling and screaming. Eventually they came and asked me if he was a recreational drug user (he isn’t) as he seemed to have an ‘unusually low tolerance of pain’ – in the end they just filled him full of morphine and got on with it. Thursday I went up to see him and they’d given him a morphine pump so he was completely away with the fairies but refusing to believe there was anything wrong with him to the extent that he made me cry and I went home. I begged them not to send him home on Friday as I was having chemo and wouldn’t be able to look after him but they sent him home anyway – I think they were just glad to get shot of him. I went in to see him after the surgical assessment and before chemo but he’d disappeared from his bed (only to reappear after about 20 minutes, smelling of peppermints and saying he’d been for ‘a coffee’. I assume that’s ‘coffee’ spelled ‘c.i.g.a.r.e.t.t.e.’.) Naturally his first port of call once he got home was to go to the pub but he reappeared fairly quickly before taking to the sofa and staying there pretty much until this morning, when he has gotten himself dressed and ‘gone to watch the football’. I’m guessing he didn’t need me to change his dressings and his Lidocaine patches and fetch him drinks and stuff today, then.
I’d really like someone to look after me for a while. Or maybe to pull me onto their lap for a cuddle and tell me I’m still pretty.
I really don’t want to go back to work tomorrow. Not just because I don’t want to be around the students, but because I just don’t want to. I wish I could afford to just take some time off to hang around the house doing nothing apart from whatever pleases me at that moment but (I might have said this before, cant remember) I only get 10 days sick leave from work (already used up quite a few of those) and then they start paying me Statutory Sick Pay of £88/week. Don’t know ‘bout you, Diaryland, but I can’t manage all my household expenses on £88/week, so I have to go to work. Even when I’m sick. L’s money from the part-time job would have covered the shortfall (just about) but I don’t know when he’s going to be well enough to go back to work now – I’m guessing it’ll be another week or so.
Urgh. My Facebook feed is all full of ‘thanks to my husband for a brilliant weekend’, ‘top night out, haven’t laughed so much in ages’ and all that stuff. Perhaps I should do one – ‘thanks to my husband for another weekend imprisoned in the house doing nothing more exciting than listen to him coughing. Nice one, babe, LY.’
Wonder if I’ll ever go dancing again.
Wonder if I’ll ever have sex again.
Wonder if this is my life now.