Wednesday, 16 October 2013


Then off goes the bell ringing through my head. Signifies that all's been said
The Bell - Villagers

Check up: ... Haemoglobin 11.9 ... Neutrophils 1.87 ... Platelets 184 ...

My test results from Monday much as last month. No plans to find out my FLCs this month, so just presuming my myeloma continues dormant.

Sitting in the hospital this week for my bone drugs, I can't say I've missed it. Each visit I notice fresh changes. The corridors have been recently refurbished. More than half of the staff in the chemo unit have come and gone. Being here is very much standing still, for me. Standing still is a lot better than going backwards, or downhill, of course. Nevertheless, losing more than half a day every month, sitting in the chemo unit, is a tangible drag. Even with my headphones on I can't help overhearing unwelcome snippets of other people's woes. She had an adverse reaction to velcade. He waits endlessly for blood results. Her chemo must be attenuated. He needs assistance to walk to his seat. And then there's me. Healthy, happy, and incurable. Fiercely independent, yet dependent on endless tests and therapies. There are charities - I can't ignore it because there's a poster staring me in the face to remind me about it - set up to "support" me and "help make life better" for me.

The bone drugs, this week, leave me feeling a bit shabby for 24 hours - for the first time in ages, I retire to bed. And then I have yet another hospital appointment - this time with a physio who is going to try and get my spine fit for running again. This is a great goal - but what a drag to have to keep working on my back day in, day out, probably for ever.

Sitting in the hospital makes me think about my progress. If you'd asked me, 15 months ago, where I'd be now (or even if you hadn't asked, because it was almost a fixation for me) I'd have painted a picture of completing my PGCE (which I have not) and then backpacking the children across Asia, before setting up home in New Zealand. A carefree existence like that is simply incompatible with myeloma. It's a tricky thing for me to even think about now, and Marisa and I don't discuss it much. A year ago we had photos up on the wall of our kitchen of our "destination". For a while they were simultaneously difficult to look at and impossible to take down. They are long gone now, replaced with pictures of happy children and holidays. It's a kind of bereavement, I suppose. We are grieving for a life that never was.

Instead, where am I? On holiday, if at all possible. After the summer en famille, kicking back in France, we just took a luxurious, romantic, child-free, weekend in Venice. We're off to Turkey next, for some autumn sun in a couple of weeks and (barring something awful happening in the meantime) planning a jaunt round The Philippines in six months: Marisa and me, our wonderful children, and some of our dearest friends. In between, I'm working, but also making time to do a share of our child care.

Oh... And we recently got the keys to a little place in Sussex, and are throwing ourselves into rural weekends. A beautiful view. A wood burning stove. Easy access to the seaside, to country walks. We've been blackberrying, shell collecting, castle climbing, bird watching. Bliss.

I feel a little uncomfortable with the new self image. Holidays in the south of France? A lifestyle job? (To use the term with which an old boss used to disparage anyone who prioritised family instead of graft.) A second home? Yikes. On the other hand I defy anyone to look at Marisa and me and even think - let alone vocalise - anything along the lines of "it's alright for some". The rest of my immune system may be compromised, but I'm largely immune to feeling guilty, any more.

Many people have warned me that it can be the time when intense treatment has ended, when life returns to "normal", which can be the hardest on the mind. Seems ungrateful really - I have much to be thankful for, after all. But when I was ill I had a clear focus - getting well. Now I keep asking myself the purpose of being healthy. Am I making the most of it? Am I being responsible, but not too earnest? Am I enjoying myself enough, but not being too frivolous? Where's the optimum balance?

While I went through the intense period of my treatment I could whinge to my heart's content about bone pain, nausea and fatigue. After months of being concerned on our behalf, it's nice for people (that's you) not to have to worry about us. So I'm reluctant to inflict my existential uncertainties on you. (I may need all your empathies again, one day... can't afford to give you compassion fatigue!) Easier, therefore, to write it. (And now I have.)