Mostly about Emma

When my daughter was born, there was a song by "The Artist Formerly Known as W****r" playing on the radio a few times every day, "The Most Beautiful Girl", or something like that. Whenever it came on the radio, I used to tear up (in my pre-cancer days, I was much less of a cry baby). She was premature by a few weeks, and hence very small and immensely fragile looking, even for a baby. On top of which, Sarah and I had, by this point, experienced two miscarriages, one of which was an ectopic, and even during this pregnancy there had been scares, including Sarah having high blood pressure and odoema, creating the need for the birth to be induced and Emma to be premature. Needless to say, she was and is very special to the pair of us.



Last night, she and Sarah went into town for some late night Christmas shopping, and for Emma to collect a prize she'd won. There was a competition arranged by Borders book shop to design posters for the new J. K. Rowling book, and Emma had won - out of all the schools in York! She was chuffed to bits (almost as much as Sarah and I). The two of them also stopped off at Betty's, York's famous tea shop, and during their mini-celebratory tea, the topic of Yours Truly came up. I don't doubt Sarah will mention it at some point when she next writes a post, but from what I can gather, Emma and she discussed the current state of play, and what the future may hold. When Sarah told me snippets of the conversation, my pride in our daughter was almost as great as my sadness for her having to come to terms with such a set of circumstances as this. Emma, aware as she is of the cancer and the terminal diagnosis, asked how long I might have, and Sarah answered honestly: we don't know, but we do know he has been getting less mobile and experiencing more pain. Emma asked how it felt to lose a parent, and at first, Sarah thought this was referring to her loss of her father when she was four, but no. Emma meant what had it been like to lose her mother a few years ago. Again, Sarah was honest, "It was very painful and very upsetting, but something I came to terms with. Although this is a lot harder because it's not in the natural order of things for Dad to be facing death so relatively young."


You'll recall I mentioned how Sarah is far more than most people recognise her to be? The same, I believe, is true of Emma. This is the girl who, when offered counselling by our GP, said to both Sarah and I, "Why would I want to tell my problems to some middle aged woman I don't even know? That's what I have friends for!" This is the girl who, when I left my drugs in that Florentine taxi, told me everything would be fine, and when I began to wonder if I'd even remembered to take them off the train, told me, "You definitely did Dad. I can remember seeing you wearing your rucksack when you came out the station." Later, when the drugs had been found and returned, she told me, "I was lying. But you looked nervous, so I thought I'd better reassure you." It's the same girl who came home from school one evening, and said to me, "God, Dad. Some people can be so full of (may I swear, Dad?), shit! There's me, dealing with your flippin' cancer, and there's some girls at school moaning about not getting an email from a boyfriend, or developing a zit, or being upset about what is basically NOTHING!" And this is the girl who came home after her evening with her Mum in town shopping, and eating out in Betty's, shed a tear or two with her Mum, who beamed brightly at me as I opened the door and proceeded to entertain me by showing all the things she'd won in the prize, and some of her new clothes (an early Christmas present so she can wear new things to any Christmas do she or we get invited to). Anyone who has taken the time to get to know Emma can see how remarkable she is. Not just bright, as many kids can be, but also with a great emotional maturity - something she is having to develop, I guess.




As I say, perhaps Sarah will more accurately relate the conversation, and give a greater sense of how Emma is coping. Emma may well write her own post soon, too.



In comparison to the news of my daughter's conversation with her Mum, anything else seems quite banal, but I shall tell it anyway.

I was asked yesterday to bring an over night bag to the hospital for the cassette change on Monday, "just in case you have to stay in while we monitor if the new drug has any side effects." Given none of this had been raised by my doctor when the chlonadine was first mentioned, I wondered what on earth this new wonder drug I was being given could actually be. So I looked up Chlonadine on the web, and discovered it to be a drug used to control ADHD, used when ritalin alone isn't doing the job. Well, that was reassuring: it's good to know I won't be disrupting class any more. I suspect it is a nerve agent drug, similar to the amytriptyline I am given to ease the nerve pains at night, and being a nerve agent, may cause some side effects in terms of my cognition and alertness. I'll just have to wait and see on that front: Monday will come soon enough.

I've also been measured today for a self propelling wheelchair, as whilst I am still able to walk (sometimes needing to use the frame) covering any distance is just too time consuming, and the chair will allow me to spend time going into town or "walk" along the beautiful riverside path with Sarah or Emma pushing me. I am no longer at all bothered by needing the chair sometimes, and when Emma had asked Sarah last night what it would be for, and was told "just to help us take him along on trips where he couldn't walk as far as we could", she was fine about it too.

I'd asked myself a simple question a few weeks ago, and the response I had to the question sums up the situation I find myself in these days very succinctly. The question of a few weeks ago was this: "Blimey. How ill must you be for the doctor to tell you that passing blood in your urine is nothing to worry about?" [I should tell you, it's just due to the location of the prostate tumour that some blood will inevitably get into the catheter tube via the bladder] The answer is, of course, as ill as me! So now, I have a very ready answer to anything new thrown at me: "How ill must I be to need a wheel chair/walking frame/mind altering drug/spinal catheter giving me pain relief/ permanent antibiotics/ etc., etc." As ill as I am. Stops a lot of worrying, don't you think? Much less time consuming than wondering why, or thinking "this shouldn't be happening to me."