A month or so ago, Goldenballs and I booked what was going to be the trip of a lifetime, our ‘real’ honeymoon if the truth be told, paid for our very generous wedding guests who donated to our holiday fund – three weeks in the Philippines in January. Three whole weeks of exploring some of the thousands of tiny, beautiful islands, sunning ourselves, sleeping, snogging, lazing around in the evening listening to the sea, GB off diving (one of his favourite things to do). You get it, it was supposed to be on a par with Thailand last year (which was also mega). We figured we deserved it, treatment-wise it had just been constant and we were both so relieved and exhausted to drag ourselves through radiotherapy that we desperately need something to look forward to. However…
The trip is now off (and I am currently having to think of some way of getting our money back on the flights, which are non-refundable). It started when I realised I couldn’t get travel insurance. From anywhere, even the specialist cancer insurers (at this point, can I politely request people don’t send me any suggestions; as much as I appreciate they are well-meaning, the trip is well and truly off now, I’m over it, plus every insurer you try puts you through the same series of painful questions – all necessary, I understand that – about prognoses and stuff, and it is so depressing having to go over and over it with someone you don’t know). Once we’d got over the initial “oh ffs, this is so shit!” thing, I then started to listen a bit closer to something in me that I’d been ignoring in the desperate desire to have this amazing holiday, wahey! And that was that, right now, as much as I’m doing OK (I think), I’m just not feeling quite strong enough yet to go that far, knowing that IF anything happened to me, I would be nowhere near home, and with no way of getting back without insurance. I thought I could ignore that niggling feeling – seize the day! Go for it! etc – but I couldn’t and I can’t. Then I thought, right let’s weigh up all the realistic things that could happen here: firstly, the radiotherapy could well have done its job and burnt the things in my brain to buggery, never to be seen again. If that’s the case, then maybe I don’t need insurance and can go anyway. BUT if it hasn’t worked, and the tumours they know are?/were? growing pretty quickly is there a chance, even the tiniest chance, I could go and something terrible ends up happening when something pops in my brain and I end up in a Filipino hospital? Can you imagine? With no insurance?? At this point, I have to be clear: I am not ‘thinking myself into it’, I haven’t ‘just got to think positive’ or ‘keep fighting’ (absolute pet hate phrase, never use it on me please). I’ve got to make decisions based on what I know and weigh up what risks I’m prepared to take, comfortably. We could well have gone and everything would have been fine, but I’m pretty sure I would have spent most of the time out there shitting myself and what kind of dream trip is that? The only way I would have gone is if I’ve had had a brain scan first, just to see what’s going in there. And if it showed the radiotherapy hasn’t worked, not only is the holiday screwed anyway, I’m left with some information that I never really wanted in the first place!
After much mulling it over, I’ve decided that I DON’T WANT TO KNOW. Not at the moment, and if the price of that is what will have undoubtedly been a fantastic holiday, then that’s just the way it is. The brain team don’t want to see me again until March and that being the case, why on earth would I want to put myself through the trauma of more scans and more waiting for results so soon after the worst few months of my life (yes, they really have been that bad)?? It’s not even like I get to have the next few months completely hospital-free – I’m seeing Alison again on Wednesday and, whilst I’m hoping for another appt like last month (“nope, no chemo yet. See you next month”) she may well start getting on my case about more treatment or making me have tests and scans I don’t want. I just don’t know.
What I’ve realised the longer I’ve lived with advanced cancer is that you have to be increasingly aware of the information that is available to you. And crucially, how useful it is for you to know certain things; it’s something I have to consider so much more than I ever did. As little as a year ago, I was itching to find out whether the latest chemo I’d been on had worked, or whether we needed to change. Because there was a plan of action ahead at least. I could use that information to move forward. I found a diary the other day that I started writing when I was first diagnosed in 2009 and man, I sought out everything I could find about treatments, options, side effects, fertility, everything. I knew more about my type of cancer through my own research than had ever been explained to me by any of the doctors. I worked out the link between triple negative cancer and the BRCA1 gene mutation in young women (below 30, I was 29 at the time). Even when I took this to my first oncologist and she dismissed me as “having trouble coming to terms with the end of your treatment dear, it’s not uncommon” and sent me away like some whining hypochondriac, I knew she was wrong and I begged my surgeon to send me for the test instead. The test that, had it been done sooner, and my BRCA status picked up earlier, may have meant that all this could have been avoided (accepting the horrible unpredictability of cancer obviously).
Things are different now, certain things are helpful for me to know. Others aren’t. On pretty much a daily basis, I’m reminded of my predicament with all sorts of ‘knowledge’ shoved in my face, whether I like it or not – driving licence gone never to return, hair gone never to return (replaced by a swishy weave but it’s not the same. Do you know how much I long to wash my own hair, to have someone blowdry it for me?), netball trainers hung up forever after almost 20 years and recently, a new, very brutal and cruel reminder in the form of a pregnancy test that was thankfully negative. I can say thankfully, and mean and believe that logically – getting pregnant now, or ever, would be a total disaster. I know this. And medically unlikely anyway. But it doesn’t mean I didn’t weep in the toilet at the fact I will NEVER get to do a test and be excited about it. Standing with my husband in our kitchen going ‘is it time yet? You look, no YOU look…’ Like other newly married couples in their 30s are doing right now, the thing I would have so desperately wanted if our situation were different, knowing how very loved any child of ours would have been. But I’ve made my peace with that, and luckily the toilet tears didn’t last long
There are other things I’m very interested in knowing though, and I’m making more time to go and find out about – alternative therapies, supplements and healing mainly. Things I had previously dismissed a bit, as I thought modern medicine would just sort it all for me. Anything that keeps me out of THE CHAIR is worth investing in, anything that’s not going to make me feel terrible and may even help me create my own miracle, bring it on. I’m back at The Haven on a very regular basis, I’m seeing a healer (I know, me right?!), I’m sleeping as much as I can, working in between and I’m loving my husband and kittens to death. As for the Philippines, who needs sun-drenched beaches when you have the wilds of Scotland which is where we’re off to instead. To drink whisky, wrap up very warm and enjoy some time on our own, just the two of us. And that’s all I need to know at the moment. Cheers!