Overwhelmed is not a good place to start the day

We are both so tired – managing cancer and ME is not great. There is no let up with work, no temporary pass each time we have to confront the cancer with another hospital appointment.

I’m tired of pretending that things are okay. They’re not. They never will be again. But I know the time will come when I’d give anything to go back to now, even though ‘now’ is so painful.

What would the future me tell the current me to do differently? Less pointless work, probably! My life seems to be nothing other than pointless work. Right now we have reason to hope so why do I feel so afraid? Probably because I’m exhausted, because the first line of treatment was disappointing – the splenectomy clearly didn’t knock the cancer back in the way the docs had hoped.

One thing I do know: my emotions and fears tell me nothing. The last 18 months has taught me that much. God knows and he is in control. ‘My times are in your hands’, the psalmist wrote (Psalm 31 verse 15). I find that very comforting; my life is in God’s hands.

Husband has been feeling really tired, lacking in energy and ‘out of it’ at times, which he’s finding very frustrating. Now that treatment has finished he’s keen to get his life back. ‘Vincristine finger’ affects him at times – ‘like you’ve put your fingers in a bucket of nettles’ but he assures me it’s not much of an issue. His fingers do tingle very uncomfortably when he has a shower – heat seems to make it worse – and he’s finding it very difficult to write because his hands shake. His toes have been less affected than previously, so no disagreeable ‘itchy socks’ feeling.

He wants to exercise but knows that if he overdoes it he’ll pay for it and have a couple of frustrating ‘unproductive’ days. It seems to affect him much like the fatigue with ME ie the payback for over activity isn’t immediate but 1 – 2 days later, which can be difficult to manage. He’s getting better at managing his energy levels but has a tendency to do what he thinks he can and then hit a wall and run out of energy mid afternoon. I’m trying to help him to approach activity as if he had ME because it seems to help – to balance rest and activity and look at what activity is good for him and what isn’t. “Imagine you have a jug full of energy”, I try to explain. “You need to do things to put energy in (exercise, rest, eating well) as well as taking it out!” He’s new to this so it’s going to take time!

We troop off to the hospital for yet more blood tests. The levels are stable – red cells at 131, platelets at 428 so up a bit. It’s such a relief to have some stability. Doc addresses us with a smile, “Life starts again.”

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