Thursday-Friday, 23-24 April: Of Roller-Coasters

‘Upside down you turn-a me, Inside out…’ goes the Diana Ross song and it’s the theme tune of these two days. They begin on a down note. We’ve all slept badly. I’m really tired, after a night broken by lots of night sweats and a record number of trips to the loo. It’s as if both kidneys are working overtime, to remind me that my renal function is fine. Worse, Anna has had a bad dream. She interprets it as signifying her fears that she may not be able to cope further down the line. Worst of all is Maddy’s behaviour en route to nursery. The whole way (a good twenty-minutes walk), she clings to Anna’s leg, saying she’s sad. Despite Anna’s best efforts to coax it out of her, our little girl can’t – or won’t – explain why. Our suspicions are confirmed. Maddy has cottoned on to the fact that something’s amiss. Her routine has changed dramatically. No more day looking after her on Tuesday evening s while mummy’s at work; no more sleepovers at daddy’s on Fridays so Anna can have a break and we can spend time on-to-one; no more expeditions with daddy on Saturday mornings to visit places in London or team up with friends. I’m gutted. What to do?

Since we’re on this track, let’s get the rest of these two days’ downers out of the way (though they actually inter-leaved with the good stuff described below.) First up are my scans from C and W. I asked for a copy in case we ever need a second opinion and on Thursday I went to pick them up. Here they are, stored on a c.d., in an innocuously discreet jacket. Yet from the moment I leave the X-ray department, it seems to be burning a hole in my backpack. I suffer a miniature version of the tsunami of fear which overcame me in C and W a week ago. At once, I decide the best way to conquer it is to force myself to put some of the images up on the blog. That will oblige me to first examine each one in turn, in order to select the best 2-3. Best? The thought of looking at any of them again makes me feel sick. And what of the readers of this blog? Some might welcome a chance to see what things look like on the inside and thereby get a truer insight into what’s at stake when someone gets cancer. Others, I suspect, will be horrified, even if I post a ‘health’ (the irony of it!) warning ahead of time. But if I just let the c.d. sit there in its jacket, won’t it mean that my fear has conquered me. What to do?

Dread... no natty about it
Dread… no natty about it

I also get the first negative comment on the blog. Even though I’ve had so much positive feedback, it jolts me. It’s from an old ‘friend,’ whom I’ve seen maybe twice in ten years – and neither time by an arrangement we’ve made. I can’t work out how he could possibly have found out about the blog. The apparently ever-widening ripple effect? The main objection he makes is that I’m indulging myself, obsessing over my illness; he compares me unfavourably with his brothers, each of whom have had cancer diagnoses, which they’ve allegedly responded to in the ‘proper’ fashion, button-lipped and treating the condition as if it were, as he puts it, ‘a scratch on the knee.’ He also complains of being bored at times by the narrative and that I make too much of Maddy’s ‘tantrums.’ Having no children himself, and a being a singleton since time immemorial, he again measures me by his experiences of his brothers – or rather their kids, when surely everyone knows that other people’s children’s behaviour is far less concerning than one’s own. I just smile encouragingly when Rosa or Isi or any of Maddy’s other friends throw one. There are several other wounding remarks.

When I show Anna his comment, she says she’ll punch him on the nose if she ever has the misfortune to meet him. Rereading it later, I try to be objective. I did ask readers to say if they were getting bored, so I can’t complain when they do. As for the rest, I conclude from his self-complacent description of how he’s sitting outside with a bottle of wine, listening to Elgar and watching the sunset, that he must have been drunk by the time he got down to writing his piece. Let it go, I tell myself, move on. (Please folks, don’t be inhibited from criticising – I mean that sincerely – but please do so in an email first.)

Then there’s all the dross, which despite my best efforts, seems to be mounting by the day. Equity transfer documents and the lawyer’s meetings these will entail. Negotiating with USS, my university pension provider, to try to find out what’s in my (family’s) best interests given the current situation. Trying to work out the mechanism to set up a fund for the ‘Palestine Prize.’ Fine-tuning the will. Re-arranging next Tuesday’s diary so that I can attend the pre-op assessment to which I’ve been peremptorily summoned. How far I seem to be drifting from my idea of a perfect day: breathing-space to write the blog in a more leisurely fashion; breathing-space to read and listen to music; breathing-space to spend more time with friends and my beloved family. Marvell summarises where I am in his usual pithy way:

But at my back I always hear.

Time’s winged chariot hurrying near;

And yonder all before us lie

Desarts of vast etarnity…

(Yes, that’s how he spelled the last line, so the long ‘a’ would slow things down, make the meaning resonate even more.) Gotta just keep going with the crap…

But all this is outweighed by the positives the two days bring. First of all, I get a great boost in terms of my concerns about (my puny) intellectual ‘legacy.’  Robert gets back to me from New York and agrees to read the Introduction quickly and, if he’s happy with it, to expedite it through the editorial process. Let’s hope that Haim and Yosefa were right in their comments.  Then I get a very sweet email from the agent Clare Conville, who agrees to read the opening chapters of the novel I mentioned in the last post. She wants it in time for when she goes away next week. I’m doubly grateful. She’s not just responded positively but it sounds like she’s going so far as to add it to her holiday reading. In the same vein, my old friend Caroline Pick, from Durham undergraduate days, writes to ask if she can do a bust of me. Funerary sculpture or not, I’m hugely flattered. She did a full-size head before we graduated and it’s among the biggest regrets of that period of my life that I wasn’t able to carry the heavy, but delicate, clay sculpture away with me when I left the university. She caught my personality perfectly and it would have been a wonderful thing to have all these years. But with all the other stuff I was burdened down with, I just couldn’t see how I’d manage on the train. I’ve often wondered who’s been hanging his or her hat on ‘me’ all these years. We arrange to meet to take some photos she can work from during the preliminary stages.

I’m also boosted by further lovely responses to the blog, including one from a complete stranger, which makes me feel better about my ‘friend’s’ comment. Having issued stern invitations to ‘follow’ me, I now have several people I don’t know on the case. Two have the same family name. I wonder if one of them, or a member of their family, is going through the same thing as me. If so, I really hope this blog’s providing some help and useful information. Word seems to spreading apace. I’m getting more and more emails from people I used to know who, bafflingly, have somehow found out. I appreciate the messages but direct everyone to the blog for fear of feeling further overwhelmed.

It’s also huge fun to get the honeymoon booked at last. Thanks everyone for your great suggestions, which might become week-end destinations in the future, d.v. We’ve settled on a rather grand-looking hotel in Bournemouth, somewhere eI’ve never been. It has a stone stair-case straight down from its front garden to a beach of golden-looking sand. The receptionist promises a large quiet room with sea views. It has lots of amenities, including indoor pool and spa, in case it rains. And if not, it’s within easy range of some apparently wonderful walking, with sites like Hengistbury Head (what a wonderful Saxon name, straight out of a Thomas Hardy novel!) a short hop away. My friend Lori, who lives down there, sends us a comprehensive list of good places to eat, from funky whole-food cafes to Michelin-starred restaurants. (I think I might give the alkali diet the week-end off.) And it’s all less than two hours on a direct train from Clapham Junction. I think this will suit Anna and me perfectly and we’re both getting really excited now.

Equally inspiriting is a Friday afternoon visit from Sally (see earlier blogs) and our mutual friend Gabi. Years ago, when I lodged at Sally’s house in Fulham, Gabi lived up the road. She’s a beautiful Rumanian woman who’s been through a lot since we first met. Now remarried, her equally striking daughters grown up, she’s been working as a counsellor, part-private, part-NHS of which, ominously, she rather despairs. Generous as ever, Gabi has brought me lots of little treats, some of which are unfortunately forbidden by my new diet. Maddy, no doubt, will want to tuck in.  I see less of Gabi than I’d like. The last time was for New Year’s eve. But she’s one of those people that, however long the gap, you take up from exactly where you were before and with whom you can be completely open.

Gabi: multumesc for your advice and support
Gabi: multumesc for your advice and support

Over tea, hoping to exploit her professional knowledge, I ask for advice about how to tell Maddy what she needs to know without overwhelming her with what can wait – or never needs to be told. But it’s Sally who comes up with what seems like the best way forward (see below) – and Gabi endorses it. She, in turn, drawing on her long experience with cancer sufferers, stresses the importance of ‘mindfulness’ and living in the present as much as one can. However understandable my fears about the future may be, and doubly so in relation to Anna and Maddy, she insists that worrying about imponderables will do no good. To that end, she’s brought along a c.d., ‘Mindfulness-Based Cognitive Therapy for Cancer,’ which she uses in her practice, and offers to come back to guide me through it. Later, I align perfectly on top of the scans disk. They also offer very useful advice about the dreaded scans, reassuring me that it’s alright to feel frightened and not to feel the need (unless I really want to) to put myself through the ordeal involved to post them. I’m persuaded that there’s no need even to look at the bloody things again, let alone put them up on the blog. Nothing like very old friends to gently help one put things in perspective…

They’re finishing their tea when Anna arrives with Maddy for tonight’s sleepover. The atmosphere immediately becomes less charged as Gabi shows Maddy some video footage of daddy making a fool of himself in fancy dress on New Year’s Eve. Anna has bought a new Arna outfit for the birthday party Maddy’s going to tomorrow morning. So sweetly, she surreptitiously passes it to me, saying I should tell our girl it’s from me. Maddy’s delighted. Her nursery clothes are off in a trice and soon she’s parading round, making princessy remarks which have us all in fits.

Best of all is what happens at bed-time. She listens with real concentration as I join things up in the way Sally suggested. I begin by enumerating all the things we used to do together, one-on-one. Maddy nods solemnly.

‘Well, sausage, it isn’t because I don’t want to do them any more. You know how much I love our time together. We’ll do everything again very soon, I hope. But I’m a bit unwell at the moment, that’s the only reason we’ve stopped for a bit. Do you understand?’

She considers a moment before stepping forward and giving me a kiss on the lips, followed by a hug. I’m so moved, I feel myself about to well up. Perhaps she senses that, too, because she suddenly cracks her gorgeous smile.

‘C’mon, laugh, daddy, laugh!’

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