Running on Empty
January 24, 2018
One week ago.
I’m recovering, at last. It’s been a grim week, in bed for five days running to the loo every hour and a half. If I could have dragged the loo into bed with me I would have. I’ve never felt so ill. I could feel my mind closing down, thoughts disappearing, all sub-conscious effort focussed on getting my body over this toxic shock. An overdose. I was physically wrung out.
Days later when I realise there has been a loo gap of six hours I know the worst has passed, as it were. Over the next day or two I feel my mind reawaken and begin to look outwards again. I feel like I’ve just done ten rounds with Mike Tyson – or maybe just one.
I’m sitting in our sunny kitchen as I write. I’ve taken myself off all meds except iron, as I still have a tendency to anaemia and I know the signs. I have a consultation with my oncologist in ten days and I’m going to ask for a break from the chemo. I need to recover, the nerves and skin of my hands and feet need to recover, my guts need to recover, and the thought of more chemo going into my arms chills the hell out of me. I’ve been taken to the limit.
Gloomily we have been advised by my GP to arrange a meeting with our local hospice to discuss the care I may need at some point. This is really to get paperwork in place, but it’s a sobering prospect. This is all very much at odds with my current state of mind, which is to start a new photo portrait project, make more sourdough bread, do a road trip up the east coast of Britain with Manda, and get back on the bike as soon as I can to build up to cycling 100 miles for Cancer Research.
There’s stuff to do.
I’m getting back to normal, feeling stronger, eating well, and I can walk for an hour before getting fatigued. We are in a small, quiet and very warm meeting room at Grove House, a local hospice that arranges support for patients and their carers, either there or at home, or both. We are talking with Joan, a kindly lady very experienced in These Things. We give her the history of my illness, and she understands that we are pretty organised, as self-sufficient as we can be, but need support at critical times. I realise it’s been less than a year since All This started. Well into the talk, I am asked two crucial questions which Joan emphasises that I don’t have to answer now. But I do. Where do I want to die, and when I die do I want to be resuscitated?
At Home. No.
Joan says it’s not set in stone, I can change my mind as and when. She offers all sorts of support, and we are overwhelmed. Some of it is appropriate to us, some of it feels a bit ‘old people’s homey’. The emphasis there is on quality time with a doctor or nursing staff, or a counsellor. There are groups the teach mindfulness and relaxation. She says peer support is very valuable. The meeting brings everything into sharp focus, and still I am not ready for this yet, confronting a reality that is still very surreal. We are given leaflets and booklets that I can’t bring myself to look at.
We get home and drink tea in an emotional daze. We have another meeting in two days at Mount Vernon with the oncologist. He will give us options according to the amount of chemo I’m willing to have, and after he’s seen the CT scan, according to the rate at which the cancer is growing. The chemo has left me traumatised and I’m hoping there is a purely oral alternative. Intravenous chemo is not an option for me at the moment. With sessions three weeks apart, I feel terrible for at least a week afterwards, okay for the middle week, then worried sick for the last week in anticipation of the next session.
There is a lot to weigh up – a decent quality of life for a shorter time versus feeling crap all the time.
We are nowhere near the end yet, but as Amanda said today, ‘I’m going to carry on planning for it, while not believing it’s going to happen.’
I think I feel the same.