Control

There’s lots of good things about being home. I have Marisa as my nurse. The children have just arrived back from a weekend away – and the older 2 have elected to sit at the foot of my bed, playing their DSs and singing Olly Murs, which is more lovely than it sounds. And on practical matters… My mattress is infinitely more comfortable. I have a duvet, after weeks of thin blankets. I can potter about, among my own things. I can look out of the window, over the frosty gardens. I can even go outdoors. I tried to think of anything that was better in hospital, and could come up with just one: if you want to sit up in a hospital bed you can just press a button. If you want to do so at home you have to put some effort in. Honestly, that’s the only thing I miss.

Of course, at home I don’t have blood tests, so I don’t know my counts, though I’m sure they’re progressing. I’m due back in hospital tomorrow, so I will get a status update then. In the mean time we’re taking my temperature every few hours to keep an eye out for anything that might go wrong. All fine, so far. And I’m still on a wide selection of drugs – six types of pills and a course of self administered injections.

Coming home has made me feel quite spectacularly exhausted. I don’t know if this is just because a familiar environment changes my benchmarks of what energy levels I could have. Or maybe the lower temperature (my hospital room was a sweat box) is sucking energy from me. Or maybe my ambient activity levels have increased – after all I haven’t been up and down stairs for a while. Whatever the cause, I am utterly physically spent. Like nothing I have ever experienced, and certainly beyond my powers of description. I am well aware that the recovery period for SCT is at least 3 months, and I have only had 2 weeks. So this is all to be expected, but the sensation is quite extraordinary.

The physical regime that will get me back on my feet must be a balanced one. Too little activity will lead to a slow recovery. Too much exertion will be counterproductive. Today I went for a 10 minute walk, sticking to the top of the hill (most directions from our front door go steeply downhill, and I don’t think I’d be able to get back up!) Until now, the fight with my myeloma has largely been beyond my control. But the battle to regain my physical fitness – after all my poor battered body has endured in the last year – is well within my control. That is an important milestone in itself. From here on in I can take responsibility, pleasure, and credit, for my own progress.