tiltingheads

Cancer and other stuff

Archive for the month “May, 2012”

Every single second

I always assumed that, if and when ‘the end’ approached, I’d have some warning or at least some idea. And the fact is I may still do, when the time comes. Alison may, at some point, be able to give me a rough estimation. I’ve got one more cycle of this current drug, starting on Wednesday, then scans on my brain and my chest in a couple of weeks to see what’s going on. Of course it’s entirely possible – keep praying people – that this is the one that nails it. That the tumours will have shrunk, that my brain looks healthy and normal post-surgery. I don’t feel unwell, a bit more tired than usual, and there is still this nagging feeling in my side that doesn’t seem to be getting any better (it’s not painful, my breathing is fine and I’m not coughing. In fact I’ve cycled all over town the past week – who needs a driving licence when you’ve got a lush new bike and a cycle satnav app? – so I’m not panicking too much just yet but I am preparing myself for what could be a difficult results appointment next month). Anyway, we’ll see. Obviously I’ll post an update on that score in due course.

But what if everything I assumed is wrong, and one minute I’m fine and the next I’m gone? Before the ‘think positive’
brigade start piping up, I AM being positive. I’m not curled up in a ball weeping every day, I’m still working, still planning our wedding in September (btw, what is it with weddings? Why does everyone want to bleed me dry?), still making plans. But it would be silly, and actually maybe a bit unhealthy, if I wandered around pretending it’s not happening and that there is absolutely no chance I could die any time soon. Especially after what happened to Ellie. I hope it doesn’t, and I’m not planning to pop off any time soon but neither was she. Nor are people who get knocked off their bikes, or step into the road and get hit by that bloody bus everyone goes on about. None of us ever really thinks about our own deaths I don’t think. I suppose I’m just forced to, knowing what I know. Perhaps you should all too as its the only thing that’s guaranteed in life, that we’ll all die eventually. I’m not afraid of dying, but I am afraid of regrets and opportunities that, once missed, you can never get back again.

It’s hard to get the balance right between being ‘prepared’ and living normally. I mentioned in an earlier post that it’s a bit like someone holding a gun to your head and you don’t know if and when that trigger will be pulled, perhaps it never will and the bus will get you first. Then again, perhaps that miracle is just round the corner. There have been times over the past week when Andy has left the house in the morning, and as he’s closed the door behind him, I’ve wondered, for a split second, if that’s the last time I’ll ever see him. It’s hard to feel like you’re somehow saying your goodbyes when you’re still here, alive and well – ironing his shirts, watering the plants and putting the rubbish out. All it would take is for some nasty to have sprouted in my brain again and ‘pop’, I might not be so lucky this time round. But then I make a cup of tea and pull myself together and it’s all fine again.

It’s a process anyone in my situation goes through but what I’ve realised is that it shouldn’t be unique to us. Any one of you reading this could disappear tomorrow. I hope you won’t and chances are of course you won’t. But what I mean is it’s important you don’t waste a single second of your life and I don’t waste one of mine either. Weeks and days are precious. Life is precious. Regrets can haunt you for a long time. If I died tomorrow, I would have no regrets. There would be nothing I wish I had said or done, because I say and do a lot of things – I know a day will come when I can’t any more. There is not one second in any given day that Andy doesn’t know how I feel about him because I tell him and I show him, all the time. When I am gone, my friends and family will always know how much they meant to me.

If you are reading this, I hope you can say the same about your loved ones. If you can’t, pick up the phone. Right now. And watch out for those buses, eh?

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Ellie

Yesterday I heard the most horrific, sad and tragic news that my ‘cancer twin’, Ellie Jeffery, passed away the day before, 2 weeks before her wedding to Tom. I know she’d been having a tough time with the chemo she was on, the same one I was on for a few months last year, and she’d made the decision that that was to be her last one before the wedding. She was tired, she needed a break and wanted to be on top form before her big day. She asked me whether I had any regrets about taking a treatment break to go to Thailand and even though it’s likely that time off allowed a tumour to sprout in my brain, I told her absolutely not. Both of us knew the importance of making the most of every day.

Ellie and I stumbled across each other almost accidentally, in fact I can’t even remember how it happened. I’ve written about her before, she was a couple of years younger than me but we had scarily similar stories. Both of us were in our late 20s when first diagnosed, both recurred very quickly after our treatment for primary breast cancer, both of us developed secondaries quickly and we both had triple negative disease which is on the rarer side and is largely recognised as more aggressive and difficult to treat. We had fewer options treatment-wise, hormones were pointless and chemotherapy was really the only thing the doctors could give us.

Ellie and I kept in close, almost daily contact. We’d compare stories about how we’d got on with different drugs – I think we’d both been on the same at one stage or another – and we’d pass on research we’d heard of, and trials we discovered were coming up that we might be eligible for. For the first time in a long time, I didn’t feel alone. Ellie was the only person who knew what this was like, and with my recent engagement we became even more similar. Suddenly we could share more than cancer stuff and soon she was sending me ideas for our wedding and showing me the shoes she had bought for hers. We were even approached by a documentary maker who recognised our ‘journeys’ were so similar, it might make good telly. The times when I was close to giving up and chucking the towel in, she’d tell me I absolutely wasn’t to, I was to keep fighting, we were going to be the lucky ones and that our magical cure was just round the corner. When I got a brain tumour and immediately thought it was curtains, she said it “wasn’t the beginning of the end, or anywhere near it”, and I thought ‘well if Ellie says that, it must be true.’ And, up to now, she was right.

I knew she’d been feeling unwell for the last few weeks and at some point she was admitted to hospital for a blood transfusion after her platelets sank to very low levels. We exchanged messages, she said she was looking fwd to being busted out of hospital and when she admitted she was a bit worried the cancer was running away with itself, I promised her she was going to be fine, it was just the shitty little bugger trying to freak her out before the wedding. I wish my promise to her had come true.

To me, Ellie wasn’t a ‘brave cancer battler/warrior/something else’, she was Ellie. She didn’t define herself by her condition, she didn’t complain or wallow in self-pity, she just did what she had to do and got on with it, and she definitely wasn’t a victim. She was funny, clever, gorgeous, a talented journalist. She was cool, she made me want to be like her. Cancer was just part of her life, it wasn’t everything. She was so much more than a cancer patient. The word ‘brave’ is bandied around a lot when someone dies of cancer and yes she was brave but to me, ‘brave’ feels a bit passive, like she just put up with whatever happened to her and in the short time I knew her, I quickly realised she was anything but passive. The title of her blog – writtenoff – says it all. She was initially written off by her first oncologist and she took a devastating ‘prognosis’ of months, did her research and homework and found a new oncologist who she came to trust and respect, who gave her a new lease of life and fought for her every step of the way, in the way Alison does for me. She stuck two fingers up to the statistics and defied them. That’s not brave, that’s courageous. She took action, when others would have fallen apart and given up.

Ellie had grace. Cancer robs you of so many things, there’s nothing pink, fluffy and sparkly about it but not once did she lose her dignity. She became my hero in the short time I knew her, and I feel privileged and lucky to have met someone like her. Already I feel a bit lost without her and I’ll always wonder ‘what would Ellie do?’ when it comes to working out what treatments I should go for next. I know she adored her friends and they should feel proud of how they made her feel, in the way my own Team Cancer make me feel. Tom was her world, in the way Andy is mine, and it’s so desperately unfair they didn’t get the wedding day they were so looking forward to. Today I went shopping for wedding dresses with a heavy heart, feeling almost guilty that I’m still here, getting to carry on planning my own wedding when she was so close to hers. But as weird as this sounds, I’ve almost felt her with me all day, urging me to ‘grab life by the balls, love, totes’ and I owe it to her to do just that. If and when my time comes to go, I’m absolutely convinced she’s keeping a space warm for me.

To Tom, her family and friends – my thoughts and love go to you all. She was one in a million x

Lansons

People are sometimes surprised when I tell them I still work – I try to do as ‘full-time’ hours as I can. Obviously within the restraints of my condition. I may be largely well and able to function but it takes a lot of medical and psychological intervention to do that. There are two hospitals, a hospice and a clinic for fat hands. I also have responsibilities that come with my position as a trustee of a major charity.

8 years ago today I joined a PR agency, Lansons. I have been lucky enough to have had a wonderful career with them in those years. Hard work, sweat, tears occasionally but fun, rewarding and its become a place of real home to me.

When I was first diagnosed in 2009, it was a huge shock. I could barely function and took the whole 9 months it took to get through surgery, chemo and radiotherapy off work completely. During that time, Lansons kept in touch with cards, presents and general good vibes and when I was ready to go back in January 2010 they welcomed me back with open arms. I was even promoted four months later. In June that year, we were back to square one with the cancer returning and by September it was worse with the lung secondaries. Shit got really serious then and one of the key things that has got me through, and continues to get me through the tough times, is work.

My agency was set up by two people who had a vision of doing things differently, of running a successful business with a heart and independence. 23 years later, that’s still what we are. When I got secondaries, it was suggested to me that my role would naturally now have to change. I couldn’t be charged out to clients any more (that makes me sound like a hooker, you know what I mean though) and I also couldn’t be put under any undue stress. I was offered a completely new role doing Lansons’ own marketing, PR and how we are seen to the industry and new business potentials. It’s a role that doesn’t depend on me being there all the time, I can email from any hospital waiting room and they are 100% behind my trustee work. Clare Parsons, my chairman, encouraged me to go for it, and thanks to a coaching session from her beforehand, I got it. I have seen the side to Lansons that makes me just get so much what they are about and I am able to target that goodwill in my job. I’m involved in some really interesting work at a senior level with the board and the exec team above them, and I’m treated like a normal person, not ‘that girl with cancer’ (head tilt). I still have deadlines, plans to make and implement, guidance to offer, negotiations to make, decisions to come to. I don’t know what I’d do if I couldn’t work, not just financially, but mentally. I think I’d just be sat at home being reminded on a daily basis that I’m a 32 year old woman who is not working because she has cancer. I’m aware that not everyone is as lucky as me, both in their overall health and also because they don’t have a Lansons. I know how fortunate I am and its something I’ve never taken for granted. In the absence of my family, who are scattered all over, they are my family. They all know what’s going on, many of them read this blog (hello) and they have seen me at my worst. They’ve lived through the bad scan results, the brain tumours and every time I have felt and heard them with me. When we got engaged I’ve never seen so many people brandishing champagne at my desk, it was lovely. Who can honestly say that about their colleagues? At least half the Godmothers are people I do or have worked with.

So on my 8th anniversary, here’s to you Lansons. For the laughs, the loves, the everythings x

Dad #3

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.

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