Thursday, 30 January 2014
It's one of those two times of the year that I really don't like. Cancer review time. Last week I had to have a PET scan and it was beyond awful. That old chestnut again, my needle-phobia. It was particularly bad last week, they had find one of those tiny little veins in my foot and fit a cannula, but they just couldn't find a decent vein. They had to stab me again and again and it seemed to go on for hours. I just lost it, utterly, totally and completely, and I sobbed my heart out for what seemed like hours.
With a PET scan, you have to stay stock-still for an hour beforehand, once you've had the sticky sugary radioactive contrast injected into your bloodstream. It's actually quite clever; the sugar courses around your body to see which cells are most active, and then it adheres itself to those cells to provide energy for them. It's the cancer cells on the march that hardly ever rest, so the idea is that this radioactive sugar stops when it reaches any, and then the PET scan can see exactly where the cancer is. Obviously, if you're dancing around instead of resting, the sugar will also go to all the muscles that you're using, so it will look like you're riddled with active cancer. So the fact that I couldn't stop my shoulders from heaving and my throat from wailing all the way through that rest period will probably bring some interesting, if scary, results.
On Monday, I've got to go through it all over again, with another injection for an MRI scan, quickly followed by my 3-weekly usual cancer treatment, which will mean another needle. I just know I'm going to be a total mess before we even arrive.
Needle-phobia has to be about the most embarrassing medical condition there is. It's very hard to present as a rational, intelligent and grounded human being when you are exhibiting such a ridiculously childish fear, and although medical staff generally try and be pleasant, you know they really think you must be several pennies short of a full pound. Being a patient is a very disempowering experience at the best of times, and once I've let myself down by behaving like a very silly small child, it's virtually impossible to regain any composure or respect whatsoever.
It's also a little-understood condition because most needle-phobics are far too ashamed to speak out about what it's really like to be overwhelmed with fear when you are in the same room as a needle.
When I was really having a tough time with needles in the early stages of my cancer treatment, I googled for information, and I was disappointed to discover that the vast majority of information is authored by medical professionals, along the lines of how to "manage" people like me. These poor, well-meaning but utterly deluded souls were completely barking up many of the wrong trees, but it wasn't their fault, it was ours. The needle-phobics. We were too timid to come out of the shadows and publicly name our fears, explain them and then help to find solutions.
So I did. I wrote a blogpost all about Needle-Phobia, how it made me feel and what has caused it, and as soon as I uploaded it it flew around the web. I felt very vulnerable posting it, but within minutes I was being contacted and thanked by other needle-phobes from all over the world. You can read the original post here http://yvonnenewbold.blogspot.co.uk/2012/08/my-needle-phobic-past.html if you want to.
That led to me speaking to several medical conferences about the issue last year too. So in a very small way, I'd like to think I've moved the boundaries of understanding a little, although there is still a massive amount of work to do to gain the understanding that people like me really need. Stupidly, I was beginning to think that if I could stand up and talk about it in front of several hundred people at a time, then I must be getting better at coping with needles, too. Last week showed that I must have been kidding myself, and I'm already getting into a flat-spin panic about Monday morning's ordeal.
Then there is the review meeting itself next Friday. I already have a splodge of cancer in my spine, so the very real fear that deep within me, the cancer is on the march to take over and win is never far away. Once the cancer has broken loose from it's original site and spread elsewhere, it's not great news ever. It means that the disease is incurable, and that it's only a matter of time before it kills you. How much time, however, is anybody's guess.
I'm lucky that I had breast cancer, because it is one of the cancers where there have been some real progress in controlling advancing breast cancer, and if the treatment works, it can hold it at bay in many cases for some years. For 5 months out of every 6, I can almost forget that I've got this timebomb ticking, and just get on with the business of living. With the review meeting looming, we're now into that dreaded sixth month, and every ache, every pain, every twinge, every tummy rumble, and I know, with complete certainty, that is all must be cancer.
As it happens, I've felt pants anyway since before Christmas. My energy levels are running on empty, I'm just always exhausted, and everything is a huge effort at the moment. Of course, there's an awful lot going on too, like putting the finishing touches to "The Special Parent's Handbook" before it goes off to the typesetters in a week or so. That really is taking up a lot of time and mental energy with still so much to do before it's ready.
Then there is my Grandson on his way in a couple of months, all exciting but any change is unsettling. The hardest to deal with is all the heartbreaking stuff around Toby moving out, more than I can deal with emotionally at the moment, plus the actual move is gaining momentum and that means there are a lot of planning meetings to attend and lists upon lists to compose as well.
I'm also horribly behind with the ever-growing paperwork mountain. I made a very depressing list of outstanding things to do admin-wise this afternoon, and it ran to three typed A4 sheets. So I tried to get one, just one, of the nasty little tasks knocked on the head. Four hours later, having been up ladders, down ladders, going through 18 ring binders of filing and 4 huge plastic boxes of yet-to-be-done filing, I finally found the crucial piece of paper I needed to complete this one stupid, single bureaucratic nonsense of a task.
Don't even ask me about the housework. You can't write a book of 65,000 words in a few short weeks in my house with my family, and also manage to keep everything fine and dandy and dettolled. Mostly I've had to write the whole book in 3-word bursts before the next interruption, unless I stayed up half the night to catch up. Which I actually did quite a lot.
So there are a hundred and one reasons why I'm probably totally spent and out on my feet, but with that review meeting looming, the only reason I can possibly buy into is that it must be the cancer coming to get me.
By the time the day arrives, you know with such certainty that you must be so riddled with it that you're highly unlikely to last out until bedtime. If that were to actually happen, I would be so narked that I let them stick needles in me for absolutely nothing that I'd probably haunt the hospital scanners for years to come just to get my own back. I also stupidly double-jinxed it last week by buying an annual car parking ticket. If I pop my clogs before the year is up, do you think if we asked nicely, they might let me rest in peace in my very own parking space?
So, with the weekend looming, and let's be honest, we all now know it could be my last weekend ever, what's to do? Take it easy and chill? No chance! I'm off up to London on a super-intensive 3 days course, staying in a really swanky Central London hotel on a mega-cheap deal. WM is coming too, and we are intending to make it a mini-holiday. Living on the outskirts of London, I've never stayed in one of these iconic hotels before, it always seems like an extravagant waste of money. My stamina at the moment, though, is so pathetic that I simply wouldn't last the weekend if I had to do the commute on a strap-hanging train then a tube 6 times in 3 days. Any excuse. The course is book-publishing related, my favourite subject at the moment, so I really can't wait.
I've still got to pack, sort the kids out, make sure everyone has clean clothes and meals planned for the whole weekend, and work out why we have a flood under our dishwasher as well before bedtime, then it's a 6am start for a full-on weekend. I'm yawning already and it's not even 9pm yet.