If your name is Liz, Lisa or Ali then you’ll recognise the title of this blog instantly. In 2007, the four of us tripped off to France for a long weekend of skiing. Lisa and I had snowboarding lessons, the instructor couldn’t say “toes” and kept telling us to stay on our “toys”. Presumably he meant stay flexible and ready to change direction at any time, which is a lot like what it feels like at the moment.
First up, an update on what’s happening medically: one of things I’ve been complaining about for ages is pain in my neck and skull. The same pain that had two cortisone injections into my neck which, if it were muscular pain, would have sorted. It wasn’t getting any better, I couldn’t get comfy at night so finally they send me for an MRI on my neck on a Friday. Monday afternoon I have 4 missed calls from the hospital and a message to call/bleep them urgently. Turns out the radiographer has spotted a ‘blob’ of cancer on one of the bones in my neck. There are 6-7 bones that make up the neck bit of your spine, they number C1-C7 and sort of hold your head to your body. Or something. The one you really don’t want affected is C1, at the base of your skull. Which one did they find cancer in? C1. I can almost laugh now but believe me I was not laughing when they said we’re worried your neck is unstable and if you’re not immobilised (head in a collar, flat on your back, don’t move) there could be some bad shit going down. Me: “like, paralysis?” Them: “no, death. Instantly”. Off I go to be hospitalised for what turns out to be 20 hours when it later turns out I don’t even need to be there. There was a specialist team meeting that morning where some super dick in skull base surgery reviewed and said actually it’s not as bad as it looks; no it’s not good but no she doesn’t need to be strapped down, radiotherapy may really help with this, send her home. And this guy is the most experienced surgeon in C1 injuries (which are complex as they can involve your spinal chord if not managed) so I would still be in that hospital bed if he didn’t think it was safe to come home.
Having spent the entire time in hospital in BITS, I mean bits, I’m discharged feeling totally emotionally broken. My mum is here, having to watch her youngest daughter in pieces, having been so relatively calm up to this point and I get home where all three of us are completely stunned at what has just happened. The next morning, my liver was screaming at me and I could barely stand in the shower. We called the Marie Curie Hospice in Hampstead, they said come in. After emotionally collapsing on all the doctors I have come to know so well there, they said why not stay for a rest? They just knew, they could see I had had such a shock and was in a real state. I ‘checked in’ for 4 nights and during that time, they patched me up again till I was strong enough to come home. They looked after Andy and my mum and dad, they welcomed the many friends who came to visit and it was so peaceful and calm up there.
As it turned out, the surgery that was mentioned is not necessary (or probably not even appropriate for someone whose disease is as advanced as mine, I think more surgery would finish me off) and I am having radiotherapy to my skull/spine instead to try and manage the pain and stop it growing any more. It’s just a holding tactic but one I have no choice over at the moment. I started today, and have two more so not long. I am on standby at the hospice in case I decide I need to go in again if things get bad, it’s totally my call and that is exactly what they’re about. Letting you make your own decisions for as long as possible, and they will work round you. They say radiotherapy is v good for bone pain so I’m hoping that’s the case.
So that’s that. Back to normal, yeah? Well, not quite. All this has done is reinforce how ‘on my toys’ I need to be and so does everyone around me. I went through the worst period of my life then came through it within the space of a week, THAT’S how quickly things are moving for Andy and I at the moment. And yet it’s the hardest thing in the world to not slip back into ‘right, as you were, what are we doing today?’ As we should obviously, and we are grateful to have this time where, bar an awful blip, things ARE ok. But when you ask us how we are, we can only really answer for the next two hours because who the flip knows when something equally awful happens again. And I can’t even say ‘yeah I think I’ll be alright for the next few days’ because I might wake up tomorrow feeling inexplicably awful in the morning. It happens and it’s really bloody frustrating, I hate it.
The single most awful thing that has dawned on me is that I, and we, have little of our own say over anything we want to do any more and for me at least, that’s crippling. I was a 33 yr old newlywed, with a great job I loved and worked hard at, I cycled to work, I played netball, I did volunteer work, I went to more gigs than I ever should have. I had an active life and now I do none of those things. Andy is here all the time now which is wonderful but I am jealous of him when he cycles to the pool in the morning, whereas it takes me hours and a concoction of drugs to get going out of my pyjamas. We are do-ers, planners, we live in the woods and build chairs for each other, we flit off to Gretna on a whim to get married. We are not sit-around-ers and that’s what it feels like we have become and it’s not nice. Of course, OF COURSE, having the chance to be together, to talk deeply, to laugh, to cuddle is beautiful, really it is, but there are times when both of us are angry at what cancer has physically and practically taken away from us, from me. It reminds us we are not like other couples. BUT when I think about it, that’s what makes us so brilliant. That we are both on our toys after just two short years and 8 months of marriage under our belt, still feeling the same way we always did though I am not the sprightly, energetic young woman (physically anyway) I once was. Even in the face of what seems like utter calamity sometimes we are still strong. To my husband x