I wonder if anyone else watched the BBC drama “The C – Word” on Sunday evening? Mike and I both decided we wanted to in the end, and over the last 24 hours or so, I’ve found the honesty and rawness of it has been a huge help for me in unblocking what I most want to express after this last week post - radiosurgery. So after a night of scribbling at the kitchen table, time for a new post, I think.
It’s been a week when I haven’t really wanted to communicate, or probably better, when the idea of trying to do so has just felt overwhelming. This shouldn’t be a big deal, for goodness sake; but I have felt is as such. After all, I’ve been begging everyone to communicate about what’s been happening to me since February. What right have I got suddenly to go silent and hidden on you now?
I think the first thing Lisa Lynch (aka Sheridan Smith) helped me to realise through “The C – Word” was just how difficult I have been finding it to deal with what’s happening to my body; how hard it’s becoming to be ‘seen’ at all over the last few weeks. For her, the nightmare was chemo hair loss; for me it has been the swelling, bright red steroid face; the dribbling when I eat or drink; the swollen feet and ankles; the distended, wind – filled stomach. The extra weight all over. The fact I can’t stop ramming unnecessary food into myself. It shouldn’t matter but it does and I hate it. I hate looking at others looking at me, and wondering whether it’s OK for them, whether the changes in me are making them uncomfortable.
And I hate the effect this has on those closest to me who have to manage the space in which we live. Another thing “The C – Word” brought out so well was the devastating effect of what Lisa was going through on her husband, suddenly plunged in to the role of carer. I’m not going to write about Mike or Ellie or anyone else for that matter, it’s not for me to talk for them; but I’m deeply aware of the cost this places on them, and that adds to the sense of guilt I feel.
All that has been bubbling under the surface for weeks now, but what has been particular to this last week since the treatment? The easiest way to describe it has been an “inability to communicate”; which I suspect most people have understood as finding difficulty either framing words or typing them – and this of course is part of the truth. It’s a return to the original symptoms that alerted me to the brain tumours. But it’s actually something bigger and more fundamental that that. Put simply and bluntly? I CAN’T STAND BEING ASKED QUESTIONS.
Questions at the moment just feel too much to process. I feel responsible for giving answers I can’t work out. I feel like everything freezes up inside my head. And my emotions don’t do what I expect them to do. I feel constantly like crying.
It feels a bit like being in a tennis match – a tennis match I’ve freely chosen to play, I have to say – and then realising I can’t return anyone’s service. Everyone thinks communicating is about forming words with the mouth or with letters, but that’s the easy bit. I can just about hold my racquet; the problem is hitting anything with it. And then I feel furious with everyone’s questions, and guilt because that’s so unfair and unjustified. I’m sure it ties in with the thing about being looked at too. I’m used to being able to gently bat things back to the other person’s court. But when I can’t return the ball, it just sits at my feet, and all eyes stay on me. It starts to feel as though nothing is able to function without me. That’s clearly delusional, so it starts the cycle of guilt all over again. And those who are closest get the worst of the irritation and bad reaction when they deserve so much better.
At the root of the irritation, I know there’s a concern for everyone’s kindness and love, which is why I go on and on about it so much I guess. I feel a huge burden to be sending back constant messages of thanks and appreciation. That can get exhausting. And if I can’t do it, I feel I should be chasing Mike & co to do it. I’m always a bit paranoid like this – fed by years of ministry guilt trips too, of course – but it hits new heights when the stakes are this high; when the kindness of so many friends is so real and deep and sacrificial. I so much need you all to know that I know that, and that it’s not you, any of you, I’m really irritated with. Just as I don’t believe you are really disappointed in me, which is what I project on to you…
Would I have been able to express anything this negative this without Sunday night’s drama? I doubt it. Thank you Lisa Lynch, and Sheridan Smith. And, of course, the BBC.
And as for how am I doing now? Good thanks. A few weeks till we know how effective brain treatment has been. A couple of days till we meet Lung specialist to talk about the primary. Everything’s moving forward as fast as it can.
Questions? Just breathe deeply, take them slowly. Easy really.