I Am Data

I haven't posted (again) for a while and I have nobody to blame but myself *gnashing of teeth*. After learning that the chemo hadn't worked I kind of, sort of, definitely lost my bounce back factor. But, after realising that the sort of flexibility I need to be able to surf intact across, over and under these unwanted obstacles is down to me *more gnashing of teeth, breast beating and generally feeling sorry for myself* I'm climbing back on the surfboard. What else can I do? Everyone else is trying so hard to be lovely that I feel I'm missing out if I don't join the party.

Since last posting I've started on the test drug, Axitinib and have been taking it for three weeks. As it's a test drug, for the first month I have to attend a clinic every week where I see a specialist nurse and doctor, both of whom are fascinated by any side effect I have experienced. The attention does make me feel a bit special and it's thrilling to have all my reactions taken so seriously. With chemo I did feel that all the side effects were just to be endured, it was part of the treatment. But on this trial, I don't know if it's on all trials, I'm taken really seriously and instantly medicated. Maybe this is what it's like in private medicine?? 

I also do feel like I am data - part of a bigger picture that is feeding into a cure somewhere down the line. I even have two pieces of paraphernalia that come with the trial. As one of the side effects can be high blood pressure, I have my own blood pressure monitor and cuff. So, an unexpected bonus for me is that I'm almost a fully trained nurse and able to take blood pressure readings of all my friends using my own medical equipment. Interestingly, it's the smokers and drinkers who are most reluctant to let Nurse Gibson monitor their blood pressure. No surprises there! The offer still stands. Please feel free to drop over for your monthly check up, if you haven't already.

In the meantime, I've realised that I need to come up with a plan. Both for my future and for how I deal with my having cancer. That's probably obvious to all of you but it's taken me a while to get there. My first plan didn't work, which is a shame because I thought it was genius in its simplicity. Basically, ignore the cancer, wait for the chemo to finish, resume life as if nothing had happened. Sadly...

For me, what I am finding the hardest to deal with is the uncertainty of my situation. One counsellor I saw suggested that I should make plans regardless of whether I get to carry them out or not, which I thought was quite refreshing. Otherwise I'm always in the position of waiting for the right time to do 'something', which in enervating. So, while we are unable to book flights to Australia until we know if the Axitinib is working or not, we can travel to Paris for a few days to see some friends. And I can start planting the garden, although there's actually never been an excuse not to do this apart from my own indecision.

I also think I have to start loving my cancer. I know that loads of people and books say that I should attack it, hate it, be angry with it, but it's taken me so long to actually like my body that I don't suddenly want to turn around and berate myself. 

I watched the Horizon programme on cancer research at the Royal Marsden that screened the other week, and what I thought was really interesting was that one of the researchers said that cancer was a naturally occuring process, it is part of our bodies, it's not unnatural. That's why it is so hard to treat. I found this quite comforting. So many people have exclaimed to me that it's 'such bad luck' that I've been diagnosed with cancer, which has always upset me. Not just because I don't want to be seen as unlucky (who does?) but because being diagnosed with cancer seemed to be a character fault, or a mindset - a series of bad choices resulted in some of my cells growing too fast. Unlucky.

I don't think so and my timing might be perfect to test my luck. The racing season has started and my dad has given me a tip. This is my first plan - go to the races more often.