Update and Musings.

Lately, things have been going okay. My liver function tests have been getting much better so my massive steroid dose has been tapered accordingly; hopefully soon I will be waving goodbye to this hamster face. Yesterday I managed to get out of the house for a few hours to go to listen to a poet called Alyson Hallett speak at Warwick University. It was a very low-key, squashy sofas and people-taking-their-shoes-off type of affair and Alyson was captivating. She spoke about her life and work and interspersed it with some of her poems. One poem entitled “Indigo Sea” especially resonated with me; I felt tearful as I listened to sublime images of pregnancy, motherhood, loneliness, fishing, loss, and passivity, and I felt a longing to be back in an environment where I was learning and creating rather than doing the washing, or sorting out the back bedroom. I guess that’s why I am finding this blog so cathartic and necessary these days. 

Leo is doing really well and behaving himself most of the time. He rarely whines at night any more, except when the rain is thunderously loud on the conservatory roof. I have managed to take him to the community centre park a few times to play fetch where I can use the new ball-launcher Matt got for his birthday. It means I can get a small amount of gentle exercise and Leo can have a good run despite my lack of strength. Indeed, I only really considered the extent of my muscle wastage recently while at the Great Britain Irish Dancing championships as I supported my young cousins Maddison and Isabella who were competing. I attempted a few jig steps in a half-serious manner and was completely shocked by my lack of coordination and control over my own movements. It’s something you don’t really realise while generally walking around, but when you try and manipulate your limbs in a more complicated fashion, and find that they simply don’t respond in that way they did a year ago, it can be quite arresting. 

A few days ago I was eight months post transplant which kind of crept up on me. I feel like at the moment I am in some strange limbo between being sick and well. I know that I am not well: the GvHD is still an issue, the fatigue is overwhelming, and I still suffer from shingles pain in my leg and pain in my back. But comparatively speaking, I am well by virtue of the fact that I am cancer-free. I often feel incredibly guilty for not feeling like my “old self” yet, like I am dragging out this cancer thing. I simultaneously feel incredibly frustrated when people around me don’t recognise that I am still “not-well”. I know this is absurd.

Sometimes, lately, everything seems vociferously loud. It’s like there are just a multitude voices going off like rockets in my head and shouting at me to live a life that is meaningful and rich because what is the point of saving my life if it is not then lived in earnest? The fatigue means the life I want to be (read: should have been) living is out of reach, but I find the mundanity and repetition of the life I am currently living incredibly irritating. I have turned into a reluctant housewife and the last thing I want to be is ungrateful but I would never have chosen this. Right now, the route between here, where I am, and there, where I want to be, is just so unclear. I feel like the road is closed and everyone else has followed the diversion and I am just sitting there waiting for it to re-open. And it seems as though if I tried to find my way I would just get lost and everyone would be honking at me for being in the wrong lane or slowing down to read the street names. All I want is to be driving down the closed-off road but no one is willing to come with me.

I think that maybe I put this cancer thing in a box for too long. I see the cancer like a little crate of hibernating worms and I was happy with that and at the time everyone was saying how wonderful it was that the worms hadn’t surfaced. But now they are wriggling upwards and spilling out, quietly at first and then suddenly and rapidly and now I can’t contain them. Before I know it I’ve said too much but I can’t get them back because they’ve burrowed into the earth, long gone, and I am left in the aftermath with an empty crate of dirt and a vacuous silence like the absence of sound after a gong has stopped ringing and everyone is looking at me shell-shocked and confused and probably not knowing what to say or do about it all.