There’s a ghost in my house

It’s me.

This is the second Saturday in a row that I feel really quite down. A useless burden. Full of hate, and hateful.  This tumour is like a newborn baby. It consumes all your time and available memory, leaving you with nothing else to talk about, boring the pants off everyone else.  There’s nothing but faded remnants of a personality that you’re sure used to exist, but maybe you just imagined it all.  I’m tired and confused, which would be difficult enough to live with by themselves, but they also make me irritable, so I’m just a lumpen pain in the arse, taking up room on the sofa.  I can’t blame my family for excluding me. All I have to offer is piles of hair on everything they touch.  I lie upstairs in the dark, banished because the girls’ constant gymnastics or A’s incessant foot tapping causes me total sensory overload.  I can hear life going on around me, without me.  Quite rightly, they need to get on with life as normal. Because I don’t have a normal any more, I just want to leave, hide myself away and not have to deal with anyone or anything.  What a selfish, self obsessed cow.

What is the point of someone like me? Will I ever be able to work again? Who’d employ a middle aged person with a fried brain and rag bag of useless qualifications and experience? I can’t contribute financially, physically or even intellectually to anything at the moment. I’m not dead. That’s good, but can I ever really live again?

Last weekend, this feeling went as quickly and as strongly as it came. On Saturday I was in a pit of despair, Sunday was a brilliant, uplifting day full of new and joyful experiences and activities. I can only hope that this weekend will follow the same pattern, but doubt it. The hair loss is affecting me quite badly.  I just brushed my hair over the sink and damn near filled it. After a solid week of constant hair loss, I just broke and started screaming at it.  Why can’t everything just go back to normal?  Despite everything that has happened, this is the first concrete, constant reminder that something is very wrong. My sore, burned bald head is kept covered because it frightens L, and I’m ashamed. Ashamed to be such a burden and ashamed that my appearance upsets my own child.

Maybe it’s the anti convulsant drugs. One of the side effects is mood swings. There’s even a term for it; ‘Kepprage’. I’m usually about as emotional as a brick, so have no language to talk about my feelings, partly because I’ve never understood them. There’s no one I can talk to about any of this. Emotions scare me. They’re like infectious diseases. It’s not fair to pass this feeling to anyone else, so if I ever actually hit publish on this post, the guilt of prioritising my neediness above your emotional wellbeing will eat me up. Maybe it’s healthy and grown up to show some vulnerability, but all it feels like is just me me me me. I’m sorry. I’ll try to remember where my stiff upper lip went.

Update 2 days later

Yesterday was a better, if not good day, and today I’m pretty much back to normal.  Thank you so much for both the concern that everyone has shown after I published this post, and to everyone who said it’s OK to share feelings, even bad ones.  This whole palaver is teaching me some lessons that are probably overdue.  My real passion and skill in life is problem solving. I love discerning hidden or emerging patterns in processes and behaviour, refining and weaving them in to a new solution, whether that’s for a situation, a business or a theory.  If I’d been born 50 years earlier, you would have had to physically remove me from Bletchley Park. (MI5 even headhunted me once because of it, but that’s another story).

Anyway, as is often the way with these sort of talents, I’m stunningly crap at solving my own problems.  Being in a situation I can’t just fix, or redesign, or joke my way out of is new and disconcerting.  But the last couple of days has shown me that actually, I don’t have to solve everything by myself. Friends, family and even strangers are way more forgiving of imperfection than I ever realised. Thank you for this lesson. I’m still mortified by the oversharing, but change always takes time.

What I am starting to see, is patterns in how the radiotherapy is affecting me. Mornings I’m at my best (now there’s a sentiment I never thought I’d express, as a dyed in the wool nightowl).  Treatment is around noon each day, after which I’m OK for an hour or so then need a nap or at least some proper peace and quiet, and then I recover for the evening. That routine is established now. What is also now obvious, is that whilst I spend probably Wednesday to Friday looking forward to the break in treatment the weekend brings, Saturday is the day it all catches up with you, and the cumulative build up of treatment means it’ll take a little longer to bounce back each time. Also, right now, day to day things that wouldn’t normally bother me, such as a cold, or being somewhat hormonal *cough*, are enough to tip the balance between doing fine on radiotherapy and on this journey in general, and not doing fine, as you can see above. Simply recognising that patterns do exist even here, and working with them means I know it will be fine. Everything is always OK in the end. If it’s not OK, it’s not the end.