So I finally got round to starting a blog. I am 32 and have secondary breast cancer in my lungs and brain. This will be a random collection of thoughts about what life's like now. Largely great but a bit weird. It's going to be quite a ride I think.
I finally got round to sorting a new GP this week, a year after moving house (I know). No big deal, people change GPs all the time except whoever my GP is is required to be a large part of my care, so it’s pretty important I find the right person - he or she will be part of a team that seems to get bigger every few months, who are (supposedly) collectively meant to come together, be joined-up and make decisions about what is right for me. The joined-upness of the various doctors, nurses, surgeons and specialists is another topic entirely; let’s just say it leaves a lot to be desired. I generally really like, trust and respect the people who are looking after me and know that each has my best interests at heart but the only person who really has a proper understanding of where I’m at with all of them individually is me. Ideally I’d have some central point of contact who would help me navigate this maze - I’m not even joking when I say that approximately half my daily life is spent at some medical appointment or other, whether it’s the hospice, the hospital, the GP’s office, the clinic and I never did get my PA (anyone fancy a job where you’re paid in cake). Access my calendar in work and you’d see about 2.5 days worth of appointments and travel to, from and between various places every week.
The latest big appointment this week was with Alison on Wednesday. Disappointingly, although not surprisingly, I got the call from the research place on Tuesday night to say I don’t have the right score for the trial so it’s one more option gone when there are few left as it is. Having discussed it with Alison, we’re now going to try a treatment called CMF, starting next Wednesday. Day 1, day 8, 2 weeks off. Repeat 3 times and scan. Sound familiar? Welcome to my life for the last 18 months, barring a 9 week break in January. CMF is an old drug combo (the letters stand for 3 different drugs) which used to be the “gold standard” for breast cancer until the 1990s when all these fancy, whizzy new drugs came to the market (none of which have worked for me by the way. The most recent, Eribulin, so expensive and exclusive you can only get it via a special fund? Epic failure for me. Sorry to anyone reading this who may be about to start it - the evidence is good and I know of a few people for whom it was a success). Alison has been very honest - there is more chance of CMF not working than working but she still thinks it’s worth a go and if The Boss says that, who am I to argue? Especially when I’ve got a husband to wrap myself in and bury my face in his neck. Alison, as well as being tough as old boots and a formidable force in the medical world, is also human. When we talked this week and she saw silent tears of disappointment and heartache fall down my face at the thought of more chemo that might not do anything she scooped me in her arms like my mum would do. We are in this together, me and her, and I know whatever happens she will be there.
Anyway back to the GP - whose name is TERRY by the way. Whoever heard of a GP called Terry?! I have no idea why I find that so amusing, it’s just tickled me all day. As you know, when you register with a new doctor you go and see the practice nurse who does your blood pressure and weight, asks you when you last had a smear test (yuk), all that. This (very nice) lady asks whether I have a family history of cancer, I say yes and instantly I can tell she has read none of my notes. I then had to spend 10 minutes recounting and explaining the last three years in detail, peppered with questions like, ‘well can’t they just retry some of the chemo you’ve already been in case it works this
time?’ Actually, no they can’t. Then she concludes with “well you just have to stay positive, don’t you?” Cue head in hands. I understand, I really do, why people say that and of course I agree. If I was sitting at home in a dark room weeping, it really wouldn’t help. If I moaned to everyone I came into contact with how unfair the whole situation is, if I complained and bitched and whined all the time, if I made cancer my life I would bore myself to death in seconds. That’s why when people like Alison hold me, just for a minute, and don’t try and say anything “helpful”, it’s so much better. Because Alison, and my palliative care doctor at the hospice, Karon, are just letting me BE. They never use the words ‘fight’, ‘battle’, ‘brave’. They never throw Lance Armstrong in my face. Good for you Lance, really, and I haven’t given up the hope that that could happen for me too. Of course I don’t want to die yet - I’m only 32 and I’ve just got married. But I have to be allowed to confront my own death and come to terms with it and be OK with it and talk about it and plan it and finally take some control back and not be made to feel like I’m “giving up” purely because I refuse to use up every last bit of my energy praying and hoping and wishing I could get better when there are other things I could be doing with it instead. A couple of people have looked at me in horror when I tell them I’ve done a will, written guidelines for my own funeral, the songs I want to be played, the type of readings I want, the things I want to be remembered by. And I find that completely bizarre. As far as I am aware, no-one has ever lived forever and surely, SURELY, it’s better to have some kind of influence in your own death and the aftermath. And importantly, let this have an influence on how you want to live your LIFE before you die? I am still very much alive. When I’ve finished this, I’ll stick another load of washing on, put new sheets on the bed and catch up on Coronation St. A part of being alive is accepting that you will die one day, not running around with your fingers in your ears saying it won’t ever happen and just keep fighting and battling. Death is part of life and the sooner you get your head round that, the better. That’s not to say I’ve sat around for the last three years thinking and fretting about dying, any regular readers of this blog will know that, but as I come to the end of the treatments that can be offered to me, it’s natural to spend time considering what the end could look like. I’d like to try and make it as “easy” as I can for myself and others around me and, while I won’t go into detail, I have had all the conversations with Karon that I’ve needed to and I know that, when it comes to what will be the conclusion of my life, she is absolutely the woman I want on my team.
I know this is a long one but I suppose I would just like to conclude by saying that it’s ok to talk about dying, it’s ok to try and plan for it because it WILL come to everyone. I’m not sad about it, I feel relieved at having been given the opportunity to get my shit together and my affairs in order. And in the meantime I’m going to carry on smothering myself in my husband, laughing with my friends, having regular long phone calls with my mum, going to festivals, working, eating cake and drinking beer.
I’m still floating around loving being a wife although yesterday it was back to reality with my latest scan results. A recap: I’ve done three cycles of Eribulin, the relatively new drug paid for by the Cancer Drugs Fund, the one that everyone seemed to have high hopes for. I had suspected it hadn’t worked and unfortunately on this occasion it wasn’t me having a complete freak-out which would prove to be unfounded (that’s happened enough times in the past) and I was right. It hasn’t worked. But it wasn’t as bad as I thought. I was REALLY scared about this one, I know the path ahead of me isn’t laced with heaps of really good options any more and on paper, I’m running out of drugs to try. However, whereas I had almost convinced myself it was now in my bones, maybe even plonking itself in my liver too for good measure, both of those were clear. I also had my first brain MRI last week and that showed ‘no sign of active brain disease’, meaning the surgery was - up to now - a success. My clever little noggin has healed nicely and I’m not riddled with cancer in my head which would have been a bit of a disaster. The things in my lungs have got worse, not horrendously so, but enough for Alison to pull the plug on Eribulin and come up with a new plan. The weird nagging tight feeling in my side could be one of the tumours pressing on a rib or it could equally be the build-up of scar tissue from the mastectomy two years ago. I sometimes forget what a huge op that was - having your whole boob removed, and a massive muscle in your back twisted, cut and pulled through a slit under your armpit to form the basis of a ‘new’ boob is not to be sniffed at. Anyway it doesn’t really matter what it is, just that no-one seems too concerned about it.
A few weeks ago, I went back to see the boffins at the Sarah Cannon Research Institute in Harley St, Tobi and Mathilde. SCRI run early stage trials of potential new drugs, Ellie and were both tested for a trial they ran at the start of this year - Ellie’s cancer had the right profile, mine didn’t although sadly she was eventually excluded from it for other reasons. The longer I’ve lived with cancer, the more drugs I’ve tried, the more I come to understand that, particularly for triple negative cancer, chemotherapy is pretty hit and miss - like chucking spaghetti at the wall and seeing how much sticks. The future of cancer treatment, regardless of the type, is in targeted therapies - where they look in detail at your own specific cancer, try and work out where the fault is, and come up with treatment that targets that fault specifically. The problem with cancer is that it’s so complicated, and clever. And there is a huge amount the medical profession doesn’t know about it. Even the term ‘breast cancer’ is a bit of a misnomer as it’s not one disease. There could literally be hundreds of variations and no two people’s disease will be the same. Look at Ellie and me - we may both have been triple negative but we responded differently to the same drugs. What worked for me for a while didn’t for her and vice versa. She got on the FGFR trial in January, I didn’t. Triple negative is basically an umbrella term for a form of breast cancer that, so far, they haven’t cracked. All they know about triple negative really is what it DOESN’T respond to (hormones), not what it does. So it really is a case of throw some chemo at it and hope for the best. Hence I’m now looking at drug #8.
Anyway back to Sarah Cannon - there is a drug they are looking at which targets the loss of a specific protein. It’s all quite complicated but they are exploring whether I am missing this protein - in some cases, if you haven’t got this protein, something else kicks in and makes cancer cells grow out of control. That’s about as far as I can follow, these people are SERIOUSLY clever and as much as lovely Matilde drew diagrams and tried to explain it in simple person terms I got to the stage where all I could do was nod and sign the papers to allow them to run more tests on my tissue sample. The initial test they ran gave me a score of 3. Ideally I would have been a 0 or 1 in which case an almost perfect match, but the scale goes up to 7 - anything above a 4 would have ruled me out completely so there’s still a chance. I realise this is all quite detailed but the point I’m trying to make is that this is the kind of analysis and development that’s going on in the cancer research world. And I, for one, feel very fortunate to be very firmly on the radar of these incredibly clever people, for whom nothing is too much trouble and who are dedicating their lives and careers towards trying to understand how cancer works. Will my own particular cancer code ever be cracked, will they find out exactly what’s gone wrong in my cells? I don’t know but, thanks to Alison and now the likes of Tobi and Mathilde, I’m at least one step closer to finding the right fitting shoe (Ellie once described in her blog how someone told her chemotherapy was like finding the right shoe, you have to keep trying them on until you find the right one for you - bit like Cinderella I suppose and look what her reward was once she found her shoe).
Back to yesterday - Alison’s preferred option is to see whether this trial is a go-er, if it’s not, there are still some things to try although thanks to the ‘law of diminishing returns’ the chances of anything working get slimmer and slimmer the more chemo you’ve been on. Her priority now is to try drugs that aren’t going to make me really ill, and that have at least a chance of working, however small. I’ve gone past the stage where she will throw the really hardcore stuff at me - and to be fair, I think I’ve done all the really hard ones already - she is now having to find the best ways to keep me well as long as possible.
I’ve thought about Ellie lots recently, well since she died really. Especially now. At my lowest points - and there have been many over the past couple of months - I sometimes think “I can’t, I can’t do this any more, I can’t face any more chemo. How many more times can I sit in this chair and be told, yet again, that something hasn’t worked? Just let me go and I’ll take whatever the consequences are.” Then I ask myself ‘what would Ellie do?’, I re-read her blog and I’m reminded that of course she would have done anything to gain more precious time with Tom. She genuinely believed that her perfectly-fitting shoe could just be round the corner, even when she too had her can’t-do-this-any-more moments. And she was right. While there is still a slim chance, there is still A CHANCE. I know the odds are against me now but I also know I’m still here. I’ve been married for just 6 days but already my marriage has become the focal point of my life. Every time I catch a glimpse of Andy’s wedding ring and see my new name on emails, something kicks in and says DO NOT EVEN THINK ABOUT GIVING IN. My head might want to but my heart is stronger now and it just won’t let me.
I’ve now got a couple of weeks where the best brains in town figure out where we go next, and their advice? Go and have a great couple of weeks and don’t think about, let us do our jobs. I’ve got me a wedding bash to plan.
I’m not sure how many people read this blog via Facebook or Twitter - the majority I would have thought - so you probably know we got married on Friday in Gretna Green. We told our family and some of our friends in advance so we didn’t exactly do a runner in the history of what Gretna Green is famous for, with our parents hot on our heels, but it was pretty romantic in a way neither of us expected it would be. Having done the legal bit this way, we now realise it was totally perfect for us and we can get on with planning September as normal - with some of the pressure off.
Before we got engaged, we talked about how we’d like to just go off somewhere quietly on our own. Then we get engaged and immediately I morph into some kind of wild Bridezilla (I know, I know, I promised this would never happen but it’s really hard not to!). The venue gets booked, expensive dresses get ordered, lists are drawn up and before you know it, we’re planning to get wed in front of 120-odd people and discussing canapés with the caterer. Wedding fever hits, everyone’s happy, including us.
Then Ellie dies, two weeks before the wedding she and Tom had planned so beautifully for the best part of a year, the wedding she was so excited about, and for a couple of weeks, nothing makes sense any more. Neither of us can face wedding talk, every time I look at my to-do list, I just feel sick and weepy, with what I now recognise as some kind of survivor’s guilt mixed with grief for the beautiful girl I came to identify so much with in a short space of time. Every time I thought “wedding” I just hated everything about it, which isn’t right. I just couldn’t believe life would be that cruel, how could that have possibly happened? Why? What follows is a period of deep reflection and analysis. What if that happened to us? What IS it we actually want? What’s important to us? And we quickly remember that all we really want is to be married, so why are we waiting and making a big spectacle about something which - for us - is a private, personal thing involving just the two of us?
So it’s off to Gretna Green. You have to give a minimum 15 days notice of your intention to marry up there then you can tie the knot any time after that. We arranged all this at the end of May, let a few people in on the secret and started counting down the days from there. Every day, I’d warn Andy to take care crossing the road, I stayed off my bike for a bit, I was almost manic with fear that something would happen to either of us.
Finally the clock-watching is over and Friday rolls around. Between us we pack a rucksack and dart off to Euston to catch the train. We arrive at Carlisle later than planned, miss our connection so spend a couple of giddy hours in the pub waiting for the next train. We finally get to Gretna Green with an hour to spare. Dump our bag, quick change, put some slap on and head up to the old blacksmith’s shop, where runaways have been married over the anvil since 1754. At 5pm, with tears in our eyes and lumps in our throats,
with just two random strangers who happened to be wandering round the gift shop as witnesses, we vow to love and care for each other, for richer for poorer, in sickness and in health, until death us do part. And immediately the pressure we’ve almost been suffocating under disappears and we stand in front of each other as husband and wife. We did it, we made it.
Under ‘normal’ circumstances, it maybe wouldn’t have been like this. But our relationship has been built and nurtured
under very abnormal circumstances right from the start. From our very first date we’ve known this and we’ve made it work in spite of this. We made it clear that we wanted to do this alone and our family and friends respected our wishes and let us slip off quietly. ‘Normal’ couples don’t have to live with what we do and we now recognise that making those vows in front of a church full
of people wouldn’t have been the right thing for us. It was too personal to share. That’s not to say we don’t love our families and friends to bits - we do - but this was absolutely the right thing to do. We hope you understand that. As for Ellie, I know she would have approved.
So now we’re back to real life and finally we can start looking forward to September instead of dreading it, and panicking that one of us wouldn’t make it to that date (Andy is not immortal either, he cycles enough for me to worry he’ll get squished by a lorry). We just couldn’t live like that for the next three months. We have enough to deal with without that. We’re REALLY excited about September, when our marriage will be celebrated and blessed in front of all our family and friends. The party will be immense, and the whole day becomes one big celebration of love for everyone involved. It’s not *just* about us, it’s about everyone there too. We still feel September will be “the wedding” - the dress, the booze, the music, the “isn’t it amazing being in love?”, it’s just the legal marriage has already happened. I said in my last blog how vital it is to make the most of every second and not have any regrets and for once I went with my own gut instinct and didn’t bother trying to please everyone else. There is absolutely nothing I regret about Friday, it was magical in every way and to become Mrs Marvell is the best thing that’s ever happened to me.
So we will see you all in September for the most beautiful day ever when undoubtedly I will spend most of it in tears, happy ones. And perhaps a bit drunk on the very good wine Andy is flitting off to France to buy this weekend. The food has been chosen, the canapés are in development, our bands are practising, the playlists are being drawn up. We can’t wait to see you and look forward to sharing a toast to love, happiness and of course, to Ellie & Tom.
Lots of love Mr & Mrs Marvell (it will NEVER get boring writing that) xx
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?
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
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
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.
Someone asked me the other day whether I had a “little twitter posse” and the truth is, when I think about, twitter has brought some very cool people into my life and that’s what I love about it. Anyone who follows me on twitter (@francescap79 btw) will know I’m on there A LOT. I think I’ve sent about 14,000 tweets so far. Staggering. But I get to have little chats with new people on everything - music, make-up, weddings, cancer. The wonderful thing that’s happened there is that I have ‘met’ some amazing women who are equally inspiring and passionate and interesting. I refer you principally to @ellieRjeffery, @lisalynch, @ol_cait, @is_whiz, @krispob - all of us have secondary breast cancer, all of us were in our 20s and 30s when first diagnosed. All of us face a constant battle (hate that word but it’s a horrible way to live) and uncertain futures. Certainly not the futures our ‘normal friends’ have. When one gets good news it lifts the rest of us because it gives us hope that there is hope, even in the bleakest of situations. Ellie, Lisa and I have all been treated successfully for brain metastases. All using completely different methods. For how long none of us know but it’s enough for now. Ellie and I will both be getting married within months of each other. Not bad for women with our ‘prognoses’. Another woman I have come to feel close to is @sbry (who I met in person for the first time his week, ate lemon tart with and fell in love with). The newest member of the crew, @goochdoghigh5s. A man with breast cancer, fancy that. Yes it does happen, to 300 men every year. I never would have found this network were it not for twitter and I don’t know what I’d do without sharing the ups and downs of my little twitter crew.
It’s not all about cancer though - my newest favourite boy buddy @nilesmike works in social media for @bccare which I’m on the board of. We hang out and have lots of fun regularly. All through twitter. The way I get to keep in regular contact with my wonderful friend who has two children and not in London any more but still as loved as always was, @mrslaurawood. The Bristol-Lansons contingent, @helenjthomson and @lisagstanley.
But the very favourite new friend is @mslbrewis. Long story but she’s married to a man who plays in a band that I have loved for YEARS AND YEARS. Seen them numerous times including once when I went all the way up to Sunderland to see them. She’s so lovely and friendly and nice. Thanks to twitter, aforementioned husband may be coming to sing at our wedding ceremony. I can’t even type that without chuckling to myself about how cool that is. Thank you Mr & Mrs B, and if you can’t make the wedding then you’re still my new best buds.
Anyway my (long) point is that, and this may be sad but it’s true, twitter has kinda changed my life in some ways. It’s certainly made the hard times easier, and the good times better. Cos it’s good to share with people who care about me as much as I do about them and we’re all in the same team. We’re all trying to struggle through as best we can and it helps to know we’re not alone.
After months and months of talking about it, Goldenballs and I have finally decided to get on with it and tie the knot. In typical us fashion, there was no big gesture - more a slightly drunken, giggly “well shall we just get on with it then?” and that was it. There was, apparently, a planned proposal involving a hot air balloon trip that got cancelled for the 4th time due to bad weather so I guess we/he kind of thought if we wait till we finally get to go up we could be waiting around all year for the ‘perfect’ moment. The perfect moment, for me, would have been anywhere. It really doesn’t matter. I’m not really into huge gestures and that’s never what we’ve been about. It’s what makes us us, the fact we are two equal beings, who have fun, adore each other whatever the setting and who make equal decisions about our lives together.
I couldn’t be happier - it’s all totally overwhelming but I’m used to that feeling, only this is different in that I will be marrying the man who has made me the happiest girl on the world right from the start. There is not a day that goes by when I don’t think he’s completely amazing, and every day I am astonished at how in love we are. It’s truly the best thing that ever came along in my life.
No idea where to start and I’m pretty determined not to turn this into a spectacle or a huge big expense. If you make things, can offer me a favour or lend me something, I’m likely to come after you. All suggestions welcome! We want quiet, peaceful, relaxed, fun with a monster party afterwards. That’s about all I know at the moment.
To my husband-to-be - thank you. You really are my Boy Wonder and I cannot wait to be your wife. X
I started Erbulin today. I saw Naomi the brain doctor on Monday, where she was pretty happy with everything - the report from Mr Kitchen was that everything had gone according to plan, there were no surprises when he popped my head open. I’ll have a brain scan in 8 weeks, then every 3 months. Increase the anti-seizure meds gradually, and stay on them indefinitely probably. No driving licence for at least a year. All very mad and almost feels like it never happened now. Wound is almost healed completely and The Weave goes back on tomorrow. Thank God.
So Eribulin it is. One session today, veins kaput but they got there on 4th go. Another hit next week then a short break.
Mentally? Still a touch wobbly and confused. But I think I figured out the reason why: that my utter panic is very much driven by my fear of death and if I can somehow look that right in the eye, then it stands to reason that I won’t be afraid any more. Doesn’t it? There is a part of me that might, just might, be starting to come to terms with what might happen to me in the future. I knew a woman who died of breast cancer last year and she was so afraid. Like almost dribbling with fear afraid. I never want to be like that.
There is so much of my life I have no control of any more. I’ve been in and out of hospital for a variety of reasons since we got back from Thailand really, I’d forgotten how much of your time it takes up. So much of it is just admin as well. Blood tests, lymphoedema clinic (had a swollen left hand for the best part of a year, Google it if you’re really interested). And today, I was reminded that that’s all the lead-up to the chemo itself, that’s the main event. I have no idea what the side-effects will be, I hear not too bad which is encouraging. But I am now coming to realise that any chemo I’m on now will only prolong the inevitable. And there is a balance to be struck. The last thing I want is to cling on to the very bitter and painful end, having to put myself and others through something so horrific and mentally scarring. There has to come a time when enough is enough and I have to be as ready and willing to make that decision as possible. When it’s time, which it’s obviously not.
I have been privileged and lucky to have lots of support from many fantastic organisations such as Breast Cancer Care and Macmillan. Now I’m increasingly turning to others, like Marie Curie and a website called Dying Matters. They help make people’s last stages of life as worthwhile and peaceful as possible. How can you argue with that? They want to change people’s perception and attitude towards death and dying. And I think I might want to, too. There was a famous Labour peer who died last year, having been told he had three months to live. If you saw The One Show tonight, you’ll know who I mean. Philip Gould. Again, another one for Google. He made a video in his final months, including an interview with him. He was even photographed on his own grave and he wrote a book in dying. His view was that, once he knew he was actually dying, it was the best time of his life as finally he got some control back. And he was ok with it. Amazing.
Anyway I’m definitely not there yet but I have made a will and I hope that in the coming months, my friends and family will help me plan my funeral. That may sound bleak but it’s not. It’s my way of wrestling control back. It means my precious loved ones don’t have to sit in their own grief, scratching their heads wondering what they’re supposed to do next. It’s all written down, bosh. If they never need to look at it for years, brilliant. That’s a result.
So, raise a glass to it never being for years, but to peace and humour when it does.