Saturday, 6 October 2012

Steve Jobs - one of my heroes.

Besides a love of Apple, and my desperate desire to be a bit of rebel (within a conformist environment), Steve Jobs and I finally have something in common. 


It wouldn't have been my first choice.

A glittering career as an innovative world changer would have preferable but I guess you can't win 'em all. And whilst I am no slouch in the fundraising area I expect Steve was slightly ahead of my game by the time he hit 40. 

But like me, and millions of others he joined the cancer club. Membership lasted 8 years and right now that seems like a lifetime. In 8 years time Rosie will be approaching 11, Zak will be at University and Ilias will be a stroppy 15 year old. It feels so much better than leaving now, or in the next three years, but I know that it is always too soon. Once you're in the cancer club every future dream, every hope, every 'next year' is tinged with a mental 'please God, let me be here'. That's the reality and I don't expect it ever goes away. 

But Steve Jobs is a hero of mine and he died a year ago. He's one of my heroes because he was an innovator, because he'd 'rather be a pirate than join the navy' and because Steve Jobs founded one of the world's most creative and amazing companies that embraced difference and challenged the usual way of doing things. So in remembering Steve Jobs I hope I embrace his spirit in my life and my work and that in doing so, we have more in common than cancer. 

I got dem post-chemotherapy blues

Okay, I was a tad premature in my 'the spots are on their way out' jubilation. They're back, and whilst they don't have quite the full force of before I think it's an uphill struggle for the antibiotics to keep my skin under control. My chest and back represent the worse kind of pizza skin (thank god for scarves) and are ludicrously itchy. There are spots all across my nose, chin, around my hairline and even on my eyes plus my skin is dry and flaky and feels constantly tight and sore.

I also have ulcers inside my mouth and on my lips, nosebleeds, a tummy upset, horrific acid indigestion and I am probably feeling a bit sorry for myself. I keep trying to remember that I am getting away quite lightly with this whole chemo business. I've been in work every day this week - and been busy - and managing not to be sick once (okay I was sick this morning). I am also lucky in that my mum has turned into Mary Poppins and provides a cooked meal every evening and empties potties and ushers children around during the post-chemo week. Al puts up with a lot and takes over the minute he gets home. But all of that aside this isn't the most fun thing I've experienced. And I am not sure I am the most fun person to be around a lot of the time. 

Lance Armstrong called his dog Chemo because chemotherapy saved his life. I am hopeful it'll save mine too but as dog names go I have more pleasant (and non-drug related) memories that I'd like to draw upon. He could have called his puppy Steroid - that would've been an interesting choice...

In a more positive minded way I am also holding onto the fact that life gets better for me from the weekend; when the worst of the post-chemo symtoms are abating and by Thursday I'm actually feeling pretty good. Just in time for my next dose. But I will get a few days of feeling good and energetic and without a sore mouth - the ulcers and the spots are actually a pretty debilitating combo.

So for now admire my stoic bravery from a distance - it's not that pretty or that stoic close up, just ask the rest of Sylvan Way...

Monday, 1 October 2012

28th September

Tweedledum and Tweedledee

September's final chemotherapy treatment bordered on the slightly surreal with some brilliant evidence that even faceless bureaucrats can have a great sense of humour (thank you Michael).

The first odd moment came when a man sat down in one of the chairs wearing black jeans, Nike trainers, a orange stripey jumper with a leather jacket and a flat cap on backwards (ref. Ben V-P from Curiosity Killed the Cat for those of you with a passing knowledge of the 80s). He was late 30s early 40s with a shaved head, in that 'bloke' way, and in for his chemotherapy treatment too. Nothing strange about that until he got up to leave the room (having taken off, and left, his jacket and cap) and then about 10 seconds later reappeared from a different angle with the jacket and cap back on. Bearing in mind I've only just stopped convincing myself that I have a brain tumour this was a little weird. I quickly realised that this was the twin brother of the other chemo patient.

The nurses on the Chilworth Day Unit (some of who are not known for their rapier like wit) then proceeded to make the same joke about giving the wrong brother treatment about 15 times in the course of a 10 minute period. I felt that the twin who started eye-rolling and looking a bit bored was somewhat unjustified in his frustration as let's face it, if you dress the same as your grown up brother what do you expect? These were adult men making a decision to reinforce their identical twin status through clothes - deal with it!

I should also add that my slight lack of sympathy was compounded by twin A choosing some Chilworth Day Unit tunes and twin B cranking up the stereo so we could all hear Cliff  Richard blasting out. Cliff Richard! I mean Cliff Richard! I am already poorly! And then they sang along. I was at a Cliff Richard Karaoke Chemotherapy Convention and it wasn't out of choice. My response to this terrible onslaught was to email my friends at Battersea and ask for some amusing pictures or stories to distract me, one person took this a stage further and decided start an epetition at Downing Street.

Today they came back to him
The Downing Street Response - "the Silver album is a pop classic"...
Proving that whilst Civil Servants have very dodgy taste in music (Reader, I married one) they also can have a great sense of humour.

Medical news

The spots are clearing up! Yay! Yay! Yay! Double dosing on the antibiotics has had an effect, and whilst my chin is still not the smoothest place on earth (this title is claimed by Julio Ingleses sheets) it is significantly better. Most importantly I am feeling less stressed about seen in public, it hurts less and the itching has died down. All very very good.

Chemo is still leaving me with significantly less energy than normal but I am also feeling some positive benefits. My liver swelling seems to have calmed down a little and I am feeling far more comfortable. These are all positive signs.