I started a blog

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.

I saw Alison today for the first time since the noggin episode, armed with a list of questions which have, largely, been answered in a way which makes me think that, actually, all may not be as hopeless as it felt over the weekend (incidentally, sitting in an old man’s pub on your own, crying into a pint or three is not cool. I wouldn’t recommend it).

There’s still a fair amount I’m not really sure about but the main points to note are:

- I start Eribulin as planned on Wednesday, assuming Mr Kitchen is happy with how my scar is healing (the staples came out on Monday - there were pliers, there was blood and it looks a bit like a shark bite but other than that, it’s all OK). I’ll have 3 cycles (2 weeks on, 2 weeks off, repeat x 3, so at least no ‘scanxiety’ for a while).

- For her, “alarm bells haven’t started ringing yet”; she says brain mets are more treatable than you think. She’ll discuss with Naomi whether to do any whole brain radiation therapy on top, just to mop up any cells that might be lurking but her instinct is to save that in case any problems do pop up again further down the line. My own instinct is shot to bits, I’m happy to go with hers. Her bigger concern is the lung mets, particularly in the left lung, which is starting to feel a little painful. Like there’s something heavy on my left side, round the back. Having never had any symptoms, this is a bit alarming. The difference between seeing something on a scan and actually being able to feel it - let’s just say it’s a bit odd.

- My veins have pretty much given up the ghost so they’re thinking about trying a port again. Given the problem I had with the last one (blood clot to the jugular, anyone?) I have mixed feelings about this. But I am also very keen to get this drug in me anyway I can so again, I’ll go with what they say. It’s really important to have confidence in your team and even though this shit is pretty bewildering, the one thing that still holds steadfast is my trust in Alison. Having initially had an oncologist I was really unhappy with, I’m lucky to have her.

- Despite saying I didn’t want to hear THE ANSWER to THE QUESTION, I asked it anyway. I thought long and hard about this, and I was ready. This constant limbo is the hardest part of all. Will it, won’t it? What can I plan, what should I be doing? And the good news is she said she couldn’t give me an answer, not at this stage. We have agreed that, if a time comes when she can, even a rough estimate, then she will. That’s not being morbid or defeatist, it’s facing facts. The fact is, and I quote her, that this thing will eventually catch up with me. But hopefully it won’t be for a long time. As my mum says, I’ve just got to make sure I’m running faster. I’ve got my trainers on, I’m ready to leg it as fast as I can, and when I can’t run any more, I have a feeling I’ll know. Anyway I might get hit by a bus before then.

So. Lots to digest but I feel like we might be back on track a bit. Eribulin is, supposedly, a very good drug. Let’s hope so as I’m really banking on it as it doesn’t sound like there is much else exciting in the pipeline. The major blow from today is that, because of the brain mets, I won’t even be eligible for most of the trials that could be round the corner which is a complete shitter. But I know I’m lucky to have been granted the funding for this drug. I’m not particularly political but whoever established the Cancer Drugs Fund gets a doffed cap from me - without it, I’d be staring a much bleaker future in the face and perhaps I’d have AN ANSWER to THE QUESTION after all.

It had to happen, I knew it was coming. That euphoric ‘thank God they got it out, thank God nothing went wrong and I didn’t wake up a vegetable, or worse, not wake up at all’ feeling has worn off a bit. Disappeared along with the anaesthetic. I’ve been home 5 days - loading up on medication, tentatively leaving the house and generally “resting” (which is killing me, I’m so bored). And it’s been OK, I’ve been fine so touch wood, surgery has hopefully done the trick. Please God let me never have to go through that again.

I’ve had SO many messages, cards, kind thoughts and words, gifts. It’s truly been humbling. I really do appreciate everything. But when I read my own blogs, a few days later, I realise how quickly things change, how situations become really bloody serious very speedily and your only option is to go with it. So this ‘brave’ stuff isn’t really true. I can’t believe it was only 3, maybe 4 weeks ago that this all started. So much has happened in that time. Which is great, it’s brilliant and so fortunate to have that level of medical care. I cannot fault the NHS, I have been amazed the past month at what these people do. However, no sooner had I even started trying to come to terms with the fact I had a brain tumour than it was gone. Just like that. In theory, I may never have a problem like that again. Doesn’t mean my head is not in a COMPLETE MESS about what just happened. Where do I even start? My default physical setting is ‘fight, fight to the death’, for the sake of the man I love, my family and friends. But I can’t deny that, mentally, this stuff is not easy to deal with, and sometimes it feels like I will never get a break. Even I have limits, I’m not Superwoman. Some days I am clinging on by my fingernails, perhaps this day is just one of them and tomorrow will be brighter. I know how quickly things change, once I have the horrible metal staples removed from my head tomorrow, and establish a plan with Alison on Wednesday, it may all be sweet again. I just know that the last few weeks have been really difficult, and that the after-effects may take a while to process (already it’s pissing me off that I can’t drive and I keep forgetting to take my pills at the right time).

I had a brain tumour. How do you get your head round something so horrific? This shitty disease invading your brain, the organ that makes you who you are, that could literally change you overnight. It’s not liver, or lungs, or bones, all of which I said I could handle. Anything but brain, I thought. I HAVE been lucky, chances are it’ll never come back, I still firmly believe that. But it doesn’t mean that, even just for today, I’m not shocked and upset about what just happened.

I am aware that this blog has become very frequent and there are times when I wonder whether it’s appropriate to share so publicly, so regularly, but then I remind myself of the reasons I started writing it in the first place. Not only as a way of keeping people up to speed on things so I don’t have to spend my life constantly repeating myself but also as a way for me to record every aspect of what living with (note “living”) cancer is like. Some days are amazing. The day you get discharged from hospital having had brain surgery mere hours before. That’s a pretty special feeling. The days following it, maybe not so much as you’re left with a lot of questions that, if you’re honest, you’re not ready to hear the answer to. There really are good days and bad days (well done Macmillan). Thankfully the good days outweigh the bad, by a big margin. And when a bad one comes along, all I can do is just keep scratching along, somehow, and hope for the brighter days I know eventually come. How we have managed to keep what is a relatively new relationship in tact through what has been a completely terrifying and surreal few weeks is beyond me. It’s a testament to him that I’m as sane as I am, God only knows how he must be feeling. But we’re clinging on and I suppose that’s the best any of us can do in these circumstances.

Anyway I’ll be seeing Alison on Wednesday and no doubt it’ll change again so I’d better get my head set for the next little battle. It’s exhausting this stuff. Till Wednesday…

Well. It’s all over. I went down for surgery at 8.15am yesterday, by 3pm today I had been discharged. 12 staples in the back of my head, a bit of a headache (but Tramodol helping) and a bit wobbly on my feet but otherwise no real problems. They said it was a straightfwd op, and they weren’t lying. Early feedback is they think they got the little bugger and it’s all looking really good. I’m stunned, and so happy I keep having a little cry. I know it could have been so much worse. They’re amazed at my recovery and quite frankly so am I. When I went in on Monday, they said I’d be in till at least Friday, possibly Saturday, so to be out the next day… I can hardly believe it myself. I’m SO proud of my little body. Just when my head thinks I can’t do this any more, my body rolls up its sleeves and gets the flip on with it. My surgeon was, predictably, fantastic. The anaesthetist got the drug combo just right - no sickness or weirdness. It really couldn’t have gone better (don’t jinx it now, Frankie!).

Clearly brain surgery is no walk in the park and I’ll need a close eye for the next few months but apparently the chance of a brain recurrence is about 20 per cent and there are LOTS of treatment options. I’ll take those odds, thank you. I don’t think I’ve ever been more scared in my life than I was yesterday walking down to that theatre, red pen and sticky dots all over my head, but it really wasn’t that bad. Having a mastectomy was worse. I really thought that if it got to your brain it was curtains, but it’s not necessarily the case. Yes I know the statistics but I’m not a statistic, I’m me. With a kickass medical team who have never given up on me, wonderful friends and family and of course, a man I adore who gives me something to live for every day. Annoyingly, I’ve now lost my licence for a year, maybe two, and I’ll be on anti-epilepsy meds probably indefinitely now but it’s a small price to pay really. I have an Oyster card, it’s no biggie.

So what next? A weekend of quiet cuddles with my boy, staples out Monday, Alison Wednesday where she hopefully gives the go ahead to get back on chemo. I don’t know what the future holds right now and to be honest, I’m not thinking too much about it. I know I am thankful for every prayer, every good vibe, people willing me on. I’m not ready to give up yet, far from it. I never thought I could ‘do’ brain surgery but I have. And now I feel like I can take on anything. Cancer, you sneaky little sod - you caught us all by surprise but I’ve won this little battle so UP YOURS. Try this again and we’re all ready for you next time.