It was good and it was awful but it ended up all more good than awful...
On Monday lovely David Fisher from the BCRT came a ridiculously long way south to talk to some of the boys at Dulwich College about everything the charity does and everything we have done - and why. I took Rose along and felt very proud of everyone and everything - the school, the charity, my little girl, the boys etc. I hadn't anticipated how daunting the Great Hall full of sweaty teenagers in blazers would look - and it was only years 9 and 10 - but Rose and I at least could skulk in the audience with Calvin while poor David had to front it out on stage next to the Master - he did an absolutely top job and if only one of the 400 nose-picking herberts was listening and took something away from it then it was worth the trip. David pitched it perfectly and told them all the inspiring story of Laurence Whiteley, a boy of exactly their age, who is not only an osteosarcoma survivor but a paralympic swimmer. He also showed them the DVD of petrified Calvin and Tayo - billowing BCRT t shirts and all - in free fall which of course they loved because Calvin and Tayo are authority figures caught on camera doing something scary and looking very scared. Rose loved it all - the boys had only seen her in the school magazine until now and there she was large as life and twice as fabulous. She declined the chance to sit on the stage - thank God - but basically loved all the attention. It was all very emotional and wonderful really. And it meant that Rose could tell Felix that she had had orange squash in the senior school staff room and got to go in late to school. There was meant to be a commemorative photo of Rose flanked by Calvin and David at this point but Felix had filled my camera with pictures of dead leaves and complete rubbish and it wouldn't save it - I'm really sorry boys it will have to wait for the conference now. But they're both gorgeous and you'll just have to take my word for it.
The middle bit of the week was really just killing time and playing at normal until the end of the week when leg and lungs were both being scanned over two days at Bolsover St and the Marsden. Hideous, dreadful, awful, terrifying, not getting easier, not sure it ever can or will but ultimately both were fine. Not sure if we can cope again with the double whammy so close together although in our naivete had thought it might be A Good Thing to get them over and done within two days. By Friday night we were both so wrung out and strung out that the euphoria just didn't come at all. Think perhaps a leg-and-chest two for the price of one x-ray session might make it a bit easier but different hospitals, cultures and areas of responsibility seem to make that impossible and this is our future. Psychologically none of us are designed to cope with the unimaginable horror of looking for cancer in our children and neither of us are bearing up well. What did you do today? Oh, went to a meeting, grabbed a sandwich, took my daughter to see if her life-threatening illness is back yet... I don't know if we need drugs, counselling, a wild night on the town or just a break from Rose but we are not coping very well with 'life on the outside'. And Thursday and Friday certainly proved the point.
Like all these things the whole intolerable experience is made either slightly more tolerable or utterly intolerable depending mainly on the sensitivity of the doctors involved and the spectrum is large. I could rant and rant about the Marsden as always - our consultant has to be dragged by her hair into a meeting (despite the fact our appointment was geared around her skiing holiday especially so we could see her) and there is seemingly no doctor too junior to look at Rose's chest x-ray and be unable to decide whether it is clear or not. There's a reason why parents don't look at x-rays (ohmygod is that an organ or a tumour?) but they just don't get it. I haven't got the energy any more to cope with my own fear on the one hand and their casual ineptitude on the other - so this is how the compliant patient is born. Out of resignation. I'm not doctor bashing and this is not Daily Mail journalism but I challenge any parent to survive a Marsden outpatient clinic with their sanity and sense of humour intact. Mr Briggs' team at Stanmore, on the other hand, and all his great colleagues lead the way in patient care exuding calm confidence that all will be well and that even if it isn't they have a plan for that too. They praise Rose to the skies, make her laugh, try to make us all relax and they remember that every second of it is torture until the results are in. They don't have a playroom resembling the Disney Store or five play specialists for every ten children and Rose can't make masks and bookmarks while she waits - it's a bit grim and very Dickensian but she has a consultant there that knows her name and turns up for the appointment. Anyway. Got that off my chest. Not the least bit interesting to anyone apart from us but there you have it.
So slightly bruised and battered to add to the general status quo of bruised and battered - but the news is good, brilliant, wonderful and Rose is still in remission. The Porta Romana team ran their hearts out to celebrate at Sunday's Reading Half Marathon and have raised thousands and thousands of pounds to find the drugs and the answers to keep her there. We raise a glass to all of them with lots and lots of love and thanks.
