Today I had my quarterly catch-up with the man I have come to affectionately refer to as dad #3 – Professor Trevor Powles at the London Cancer Centre (aka a v posh private hospital just off Wimbledon Village – yes it’s as swanky as it sounds).
A bit of background on the Prof and how I have come to know him: when I was first diagnosed with lung secondaries in 2010, I was keen to get a second opinion (having not had the greatest relationship with my oncologist at the time, who shall remain nameless). A friend – with private medical cover, natch – suggested the Prof, said he was amazing and that she adored him. A bit of Googling revealed he used to be head of oncology at The Marsden (basically one of the best, if not The Best cancer hospitals in the UK) and is massively, massively regarded in the cancer world. I went to see him in the October, a month after my world was completely shattered at being told I had what was an incurable disease that, at worst, could kill me within two years, and he was kind, gentle and – importantly – logical and reassuring. We talked about my predicament, he gave his expert opinion and told me to come back and see him in three months; I didn’t ask him for a follow-up, he asked ME. So I did and every time, he tells me to come back in three months which is what I’ve done ever since. Alison is obviously now The Boss and has been since March 2011 when I joined the trial she was running and she continued to be. And to be fair, I think she’ll be my oncologist till the day I keel over – you know if you read this blog regularly that I adore her. Anyway it turns out she and the Prof know each other very well, used to work together and have a great professional relationship. She has no problem with me seeing him, encourages it in fact, which is the mark of a good oncologist – the ability to work as a team without getting all egotistical about it. This is my life we’re talking about, there is no room for that kind of nonsense. So between Alison, The Prof, Naomi the brain doc and Mr Kitchen, the UK’s coolest brain surgeon, I’m pretty confident I’ve got the A Team which is a huge relief. I do not need to be concerned that I’m not getting the best possible treatment and care. Thank you NHS.
Anyway, my hour with the Prof every three months has become vital to me. All that basically happens is that I get to offload some thoughts and ideas (of course I do my own research, I know what’s going on in the pharmaceuticals world, I read enough forums through Breast Cancer Care to know that, sadly, my condition is not unique. There are many women in the UK going through very similar experiences so to be able to connect with them and hear their stories about how they fared on one drug or another is invaluable). We talk through what future options could be, I tap into his years of knowledge on a global level and I always, ALWAYS come out reassured and buoyant. His view: Eribulin is absolutely the right option at the moment, it’s had some good results even on women who have been as ‘heavily pre-treated’ as me (currently on chemo #7. Mental). There is no reason to think the brain problem will come back, if it does my next brain scan on June 11th will pick that up and they can do something about it. And, remember I had brain surgery a month ago and I’ve been back at work for two weeks already so yes, while having my head hacked open was COMPLETELY TERRIFYING, it was do-able. If Eribulin doesn’t work, there are at least two other options worth looking at. I won’t bore you with what they are, but suffice it to say that The Prof actually invented one – you get what I’m talking about now? The guy’s a genius.
So all is not lost, far from it. I’m very firmly back on track (for now). I’ve been on Eribulin for almost three weeks now and, so far, barely any side effects. More from the steroids to stop me being sick than the drug itself. Next scan will be in June sometime which in itself is scary, scan time is always hideous. But still a long way off.
The ‘w’ word is coming along nicely. We’ve set a date at the registry office and booked a fab venue for the mother of all parties. None of this sit down dinner faff, just amazing food done by a couple who run a supper club I’ve adored for ages, loads of booze, live music and a mahoosive dancefloor. And all our friends and family. And the best dress I’ve ever worn, obviously. The boy wonder and I are both very excited. Despite always saying it would be cool, not a big deal etc, it’s suddenly become all we ever talk about, in a good way. It’s a huge thing we are doing, we are taking it seriously too. The w word will be one of the best days of our lives, hopefully, but we are both committed to having and nurturing a marriage, not just having a massive piss-up for one day. And I can’t wait to be Mrs Marvell. Ruby Marvell, isn’t that the best name ever? Long story re Ruby, but it’s all I’m known as by his friends and family – I think it was a while before some of them realised that wasn’t actually my name. In fact, I think the name on the invitation may surprise a few. Tomorrow though, we are off to live in a wooden hut in the woods near Hereford for 5 nights, learning how to make a chair from a block of wood. It’s Goldenballs’ birthday this weekend, we decided it would be a cool way to celebrate. And it’s actually just what we need. It’s been a bizarre, bizarre 6 weeks. Undergoing brain surgery and getting engaged in the same month are not generally to be recommended, talk about brain melting. We’ve been completely overwhelmed by everything that’s happened to us and some time alone, away from anything electrical, cuddling up at night after a hard day’s graft, chatting shit about the wedding, is exactly what we need. It’s like a mini-Thailand, well not quite but psychologically and emotionally, yes.
Seeing the Prof today was the tonic I needed. Yes, on paper things look bad for me. But there is still hope, real hope. The combination of a medical team I respect and the prospect of becoming Mrs Goldenballs means I am still here, still fighting. I don’t know how, but I am. I will soon have a husband and a marriage I have to work hard to nourish and that means sticking around and being well for as long as I can. As long as these doctors tell me it’s worth fighting on then I will. I’ll post a pic of my chair next time, I don’t think I’ll be sitting on it but at least it will be authentic and a reminder of the time we spent together when we first got engaged. Being engaged is a lovely feeling, I can’t wait to know how being married feels.