Coke Floats and the Marsden March

Have I now got incurable cancer or haven't I? Well the jury is still out, the MRI scan was inconclusive, and I'm waiting for a call from the hospital to hear whether or not I now need a bone scan to get a clearer idea of what on earth is going on. What we do now know is that it's not just one little lesion on my spine, it's now two, so we'll just have to wait and see. Luckily, there is so much else going on at the moment that this whole thing is way down low on the "things we have to think about" list. 

"Coke Floats and Chemo" is well into rehearsal and I'm having a great time with it. It's the stage play of this blog, and it's only 5 weeks til we perform it at the Brighton Fringe. I'm playing myself, and the cast also includes WM, my lovely daughter and Anita,  my friend who took the photos for the Cancer Photo Shoot blog post of several months ago. Sheree Vickers who runs our theatre group, Savvy, is the brains behind the whole venture,  and it's her energy and vision that's making it happen. It's very hard to try and condense the whole of the last year into a 50 minute play, but somehow it's working out well. It's hopefully uplifting and funny rather than sad and depressing, and the real star of the show is a puppet that Sheree has commissioned, which is the spitting image of me. We had it at home for a week because my daughter is one of the puppet masters, and it is so lifelike that we had great fun freaking everyone out with it. Basically I share my role with the puppet, and "Mini-Yvonne" can get away with doing a lot of naughty things I'd love to do but never could. It's also a back-up - because if, on the day, I'm not well enough to go on stage, Mini-Yvonne will just have to carry the whole show. She's far more talented and considerably funnier than I am, so maybe that wouldn't be a bad idea. Later today, I'm helping put together part of the backdrop for the play. Sheree has had a  "paperwork mountain" built to mirror my own one, and our job today is to stick lots of bits of paper onto it to make it look more realistic. Sheree knows me very well, and has baked dozens of cakes to lure us over to help!

Here are a couple of photos of Mini-Yvonne - one relaxing in Alice's house with a glass of wine, and the other, looking rather fetching and sexy in some swimwear. Notice the selection of wigs, and what you can't see is that she even has removable boobs, just like my own little falsie! .

We are doing two performances at the Brighton Fringe on Saturday, 18th May, and here's the link:

http://boxoffice.brightonfringe.org/event.aspx?evId=4459#

Basically, working on this is a lot more fun than worrying about whether I've developed incurable cancer or not. Obviously, this whole new health thing is there, constantly at the back of my mind, and I have done a fair bit of thinking about it. It's a bit of a luxury being able to think about it while it's still a hypothetical issue. I don't know exactly how I'll feel or react if it does turn out to be sad and difficult news, but I do know that this shadow of cancer that's been hovering over me for nearly a year has already taken up more than enough precious time, strength, energy and resources. I really hope that any more bad news won't launch me into some deep dark miserable depression. Life is just too valuable to waste on being down in the dumps about things that we can't change, particularly if that life is unlikely to be as long as I'd always hoped and expected it to be. It's far more important to spend time with the people I really appreciate, family and friends, laughing a lot over a glass or two of vino. 

One thing that has become crystal clear to me is that I'm sick and tired of waking up each morning carrying the guilt of all the mounting admin tasks that need doing. Somehow, I really want to make a superhuman effort to clear it completely. It's the additional mindless crossing the i's and dotting the t's that comes with having disabled children.  Each of the children has a multi-disciplinary team of professionals supporting them, and in our modern-day tick-box culture, each of these professionals generate a mountain of documents and forms that need filling out. Last week I collected all the paperwork together and spent a whole day going through it, and made a list of the tasks that need doing. Of the 106 tasks on the list, I've managed to knock off 43 in less than a week. Unfortunately, another 8 things have been sent in the last few days so the original list has grown, but I'm down to about 71 things to do, I think. It still feels like a mountain to climb, but it's a lot more doable than over a hundred.

If they are ever going to find a cure for cancer for me and millions of others, they need money to do the research. A few weeks ago, Claire and Dave, a lovely young couple who have really supported my son Toby and myself over the past year, did something quite incredible. They signed up for the Marsden March, which is a fourteen mile sponsored walk from one end of London to the other, starting at the Royal Marsden in Fulham, and ending at the Royal Marsden in Sutton, where I'm having my cancer treatment.  The Royal Marsden is a specialist cancer hospital, working very closely with the Institute for Cancer Research, also based on their Sutton site. The work they do pushes boundaries not just for their own patients, but for everyone with cancer all over the world.  

What made Claire and Dave's gesture all the more amazing is that they took Toby with them, and pushed him in his wheelchair the entire way. The weather was foul, it poured with torrential rain all day along the whole route. Toby really didn't understand  any of it, which must have made it much harder for Claire and Dave, who were reassuring him and keeping him happy the whole way. They got up really early, parked the car at the hospital in Sutton, then got on a coach to Fulham. Toby was very excited for this bit. He loves coaches, but he must have thought it was a bit odd that there was no castle or seaside when he got to the other end. Instead, they walked all the way back to Dave's car in the pouring rain, so he must have wondered what on earth was going on. He has very little speech or understanding, but he did have Claire and Dave's kindness and love all the way.  We were there at the finishing line, when the three of them, along with  5,000 other soaked-to-the-skin fellow marchers, arrived safely. Claire and Dave helped Toby out of his wheelchair for the last few yards, and supported him as his walked towards us. It was one of the most emotional moments I've had this year when I saw him cross that line.

Here are the three of them, finally under cover, a few moments after they completed the walk. Already they have raised well over £700 for cancer research, but if you would like to support them too their JustGiving website link is http://www.justgiving.com/Claire-Devine1.  There's a lovely photo on it of them taking Toby ice-skating just before Christmas too. 

I'd better go and get ready to give Sheree a hand with her paperwork mountain. It's going to be a lot more fun than doing my own. I'll try not to leave it so long between blog posts next time. 

If you’d like to buy a copy of Yvonne Newbold's book,  “The Special Parent’s Handbook”,  here’s the link to the Amazon Page:

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