tiltingheads

Cancer and other stuff

Can’t even think of a title for this one

It was only a few days ago that I last updated this blog and I was going to save it until after Monday when I will have a lot more facts to fill people in on, but it feels like such a long time ago that I went into hospital and I have almost come out a different person, such is the terrible blow that’s occurred since then.

I won’t go into detail but there were many, many reasons why this hospital stay was so very different to the last time. I went in thinking ‘well if it was as smooth as last time, I’ve got nothing to worry about, I’ll be laughing’ but that turned out not to be the case. Turns out the most important thing about brain surgery is where they enter your head. Once they’re in, they can pretty much do anything if they can get at it. This time they went in at a funny angle, which meant the whole thing was complete agony when I woke up. Head, neck, cheek, jaw, everything. But I gritted my teeth and on Wednesday, Mr Kitchen came to see me on the ward to say, yes it had been a success, even though the tumour had grown again, but he’d removed it completely. Just as I was about to breathe a sigh of relief and focus on the business of healing my head and getting back on my feet, he comes out with a “however…” and explains that, on the MRI scan they do just before surgery, so they know exactly where they’re drilling, two new tumours were picked up. Again in another new area of the brain. I was so sick and exhausted from the surgery that I just sat and cried while he told me they now want me to have a course of radiotherapy to the whole brain, in the hope of zapping both what they can see at the moment and more importantly, anything that might be lurking that they can’t yet see. There’s basically no point having your head cut open every time they find a tumour and to be honest, having felt so terrible from this latest surgery, I’d really think twice about it again anyway. The terrifying truth, which I cannot get my head round AT ALL, is that no-one knows how much cancer is in my brain, or where it is, or what it’s going to do except keep growing at the rate it has been, ie fast. Every assumption they’ve made so far (“there’s only one, no no, there’s DEFINITELY only two”) has been completely wrong. I’ll be seeing Naomi on Monday to discuss what happens next, it sounds like treatment will happen quite quickly. I’ve done some research on brain radiotherapy, I am led to believe that, often the side-effects aren’t too bad, so I’m clinging onto that. There’s a whole different world between losing breasts and hair that can be replaced artificially and having your brain messed with on a level where you do run the risk of losing a part of who you are, even the tiniest part. I’m scared of becoming forgetful, losing my clarity of thought, my focus becoming duller and harder to pinpoint. I remember Ellie having whole brain radiotherapy and it sorting her brain problems out, and not really effecting her detrimentally, a fact I have had verified by Tom. But there’s another part of me that thinks ‘well I’ve already had major surgery to my head twice in the last seven months, how much more brain fiddling am I capable of?” I’d like to say “LOADS” but the truth is I am completely petrified that this is all getting out of hand now. I can’t believe I woke up from a really tough operation that I thought was a complete success to be told that wasn’t the end of it. It’s just been a massive, massive headf*ck (sorry auntie Lin and & uncle Pete, I know you hate the F word) and everything’s changed. It’s such a lonely place to be as well, I have been surrounded by people over the last few days but I feel like they’re so far away even when they’re right next to me. I don’t know if that sounds weird, it feels weird.

Anyway, no doubt Monday will bring more clarity and again I am grateful to have some of the best people in London on my team – what I didn’t realise is that what Naomi doesn’t know about radiotherapy isn’t worth knowing apparently, one of the doctors described her as a ‘bit of a physics geek.’ Excellent.

There’s probably an element of post-anaesthetic blues too but suffice it to say I feel a bit wobbly at the moment, emotionally and physically. Please remind me to stay calm and get some rest and let’s hope for a big fat plan to be in place by Monday afternoon.

Noggin deja vu

I mentioned in my last post how, in addition to the wedding excitement, something else had been going on and I guess most people know by now that I have a second brain tumour. Since we got back from honeymoon, it’s been one long round of tests, scans and consultations and I haven’t quite worked out how I feel about any of it so I’ll start with the facts for now.

Having had a tumour removed in April this year – successfully and with no real subsequent problems – I have to have scans on my brain every three months. A week before the wedding, my regular check-up rolled around and I was due for the results on the Thursday. I finished work on the Wednesday and toddled off to see Naomi the brain doctor, armed with a long list of wedding-related admin that needed doing that day. The usual bridal stuff – spray tan, waxing, nails. No-one was expecting this scan to be anything other than normal so the plan was: nip in to hospital, get the green light to see them again in three months then get on with the rest of my day. There was a lot to do/sort so I told Andy to stay at home and wait for the delivery of the wedding cheese and crates of elderflower fizz for the party.

I got to the hospital a little early and Naomi wasn’t yet there so, after flicking through an old copy of Grazia (seriously hospitals, there’s a newsagent upstairs – is it too much to ask to not have to read about ‘spring trends’ in September?) and figuring out when I would get chance to meet up with family who were arriving the next day, Naomi arrives and calls me in. She explained that, while the site of the original tumour bed was clear, a new tumour had been picked up in a completely different part of the brain – still on the left side, but in the lower part, the part that controls balance. While I sat there, open-mouthed in shock, she quickly reassured me that Mr Kitchen (the amazing surgeon who had done the first op) had been consulted and, having reviewed the scan, he was sure that, again, it was operable. It was smaller than the first (7mm vs 22mm for the first one), not in a position that was likely to cause seizures like the first had, and her advice was to go and have a lovely wedding and honeymoon and they would make a plan with Alison whilst I was away. If you’ve ever had a wedding, you’ll know that tension is somewhat on the high side the few days before so obviously getting this news was not ideal. I stumbled outside, rang Andy and my parents and quickly told them what had happened but that I wanted to keep this to ourselves until after the big day. I couldn’t face any tears and all the questions that inevitably come with something like this. I hadn’t even figured out any of my own questions by that point, I just sort of nodded dumbly, agreed to call Naomi when we got back from Greece and headed straight to my spray tan appointment, barely allowing myself to think about what I’d been told. Thinking back now, I can hardly remember much about the 36 hours after that appointment, it was just a whirlwind of deliveries, packing my dress and shoes for the hotel, family and friends arriving en masse, being at the venue the night before setting up flowers, candles, tables. Luckily The Godmothers were on hand and, having quietly told them the news, they just did their usual awesome thing of swinging into action and being amazing. I left the venue on the Friday night excited about the next day, but also queasy with the thought of having to hold it together when really, I was still utterly reeling and in complete shock.

The wedding came and went, and we flew off to Greece on the Monday exhausted but happy. When we arrived home a week later, I called Naomi who said Mr Kitchen wanted another scan done just to make absolutely sure they knew what they were dealing with, and she suggested that, as I already had bone and CT (lung) scans booked that week anyway, I should go ahead with them as between the three of them (Naomi, Mr Kitchen and Alison) they wanted a full picture of exactly everything that was happening everywhere in my body before making a final decision about what needed the most immediate attention. I had a horrible week of waiting rooms and injections, involving three scans in four days and the following week I saw Alison for the first time since July when I’d trotted off into the sunset having been given a two-month chemo break to focus on the wedding. She was as disappointed as anyone when she’d been informed by Naomi about the brain tumour (and remember, after the first operation in April, I’d been told my chance of ever having another brain problem was low – around 10-20 per cent so to have a second one so soon caught everyone off-guard). She had the results of my other scans and while nothing had shown up in the bone, the disease in my lungs had got a fair bit worse. Which I knew really, the cough that’s been occasional over the last couple of months is steadily becoming more persistent. We had a long, very candid chat about where I’m at, what my options are and she suggested that, assuming Mr Kitchen was still relatively happy with what the second brain scan revealed, I should go ahead with the surgery. While the tumour was fairly innocent at that stage, if they left it to grow I could start running into neurological problems which could “quite severely affect your quality of life.” I don’t actually remember when exactly quality of life starting becoming the buzzwords that they are now but I think it’s an indication of where this whole situation could be heading in the (near?/distant?) future. Put it this way, it’s been a very long time since a good outcome has ever been floated as a possibility.

I went back for the second brain scan result last week, and while there are no other nasties anywhere (that they can see anyway), this tumour is growing quite quickly – an extra 3mm in just 2 weeks, so I’m having surgery on Tuesday morning to get the little sod out. I’ve been reassured that, while it should be relatively straightforward again, it’s going to be a little more tricky than the first op as it’s sitting by a large vein. I’ve seen Mr Kitchen’s hands, they’re steady. Last time I was home the day after surgery. I’ll be reminding myself constantly of these things tomorrow when I get admitted. There was talk of whether a special type of radiotherapy called Gamma Knife would be more suitable but there would be problems getting the funding for this – apparently there are v strict guidelines which say your other cancer needs to be ‘stable’ and sadly the disease in my lungs is anything but at the moment.

The bigger problem (and yes it’s possible to have a bigger problem than a tumour growing wildly in your noggin) is what options I have to try and get the lung disease under control and the stark fact is that there is really only one thing left to try. Over the past three years, I have had no less than 8 different types of whizzy, sexy drug that everyone’s had such high hopes for, including the trial drug that came to nothing and the super expensive but oh-so-exciting drug paid for by the Cancer Drugs Fund that, again, did diddly squat. The only option left is an old drug that hardly gets used any more, that, in Alison’s own words, will have to be “dug out of the archives”, but which is the only one I haven’t tried. In her opinion, this isn’t likely to be successful – about a 15 per cent chance of it doing anything and, additionally, I’m now running into symptoms from my lungs that are only going to get worse, not better (although they have things they can do to try and ease that). So when I get home from having my head drilled open, again, I have to make a decision about whether I even try this drug. I am aware that at least some people reading that may have just done a sharp intake of breath – “of COURSE you must try it, this could be the one!” – but if you knew what I knew about how shit chemo is and how soul-destroying it is to keep trying and trying and trying when nothing is working, I suspect you would have some idea of the predicament I’m in. Of course there is another part of me that thinks “what if?” But the devastating reality which I have to accept is that time ISN’T SOMETHING I HAVE THE LUXURY OF ANY MORE. I know people don’t want to hear that, believe me I don’t either, but if, as Alison says, I could (read ‘could’, not ‘definitely will’ – even Alison doesn’t have a crystal ball) start feeling poorly from cancer within a relatively short space of time and I can tell from my cough and the fact I’m really quite tired a lot of the time (not exhausted by any means, just not the spritely bouncing thing I once was) that that’s already starting to happen, then do I want to risk spending 2-3 precious months feeling crap from chemo, it not working and everything really starting to go tits up anyway? Am I better off grabbing my ‘well’ time with both hands and bowing out gracefully now? But what if I do give it a go and it slows it down a bit, giving me those extra precious months?

I’ve got a lot of thinking to do over the next couple of weeks, if you can think clearly when you’ve just had another sliver of your brain cut out and for once I’m not asking for anyone’s opinion. I know everyone has one but opinions are meaningless unless you have the context I do. People often ask me if there is anything they can do and I usually say “no I’m fine really, but thanks for asking” but on this occasion I have one particular request of all of you – please, for God’s sake, don’t do the bloody head-tilting. I don’t want, have never asked for, have absolutely no use for, your pity. I’m in a shitty situation but I’m working through it, there are plenty of people in the world who are in much worse situations. Don’t feel sorry for me, I can’t bear it. The words “amazing” and “inspirational” – bandied around ALL THE TIME when talking about someone with cancer. Not that I don’t think people who are getting the f*ck on with their lives in the face of something as crap as this isn’t to be applauded, it totally is, but amazing and inspirational? Being amazing for having cancer? What an utterly shit thing to be deemed amazing for. I am not cancer. It’s a thing that happened to me and is now, obviously, a big part of my life. But it’s not who I am, please please remember that. I still have faults, insecurities, inconsistencies, annoying tendencies. I’m still trying to be a better person and everyday I have a lot to learn. I’m not amazing because I have cancer. I’m not amazing at all, I’m just trying to ‘be’. And I’m scared and I’m trying not to be too, because being scared of cancer is worse than having it.

Getting spliced. Again

It’s been three weeks since we had our big wedding bash and I can’t actually believe how long ago it feels now. I’ve been meaning to write about it for a while but it’s safe to say there has been a fair bit of other stuff happen since then, that’s dominated much of our time and thoughts. More on that another time I think.

If you’ve been following this blog for a bit, you’ll know that Andy and I actually got legally married in June, when we did a bunk to Gretna Green on our own, so our recent do was a chance to get all our family and friends together to celebrate somewhat belatedly. During the build-up (and by the way I know a lot more about organising a wedding for 140+ people now than I ever thought I would do. My best advice? Get as many people involved as possible and hire @bmbm to lead the whole thing), we were sure it was ‘just’ a party, we felt we had already done the marriage thing and we didn’t pretend we hadn’t. However, what both of us now realise, especially looking back at the photos, is that it was so much more than that.

We never planned to have two weddings, and I think everyone knows that we were so devastated when Ellie died so soon before her own wedding, that we both agreed very quickly that we couldn’t risk that happening to us so off to very rain Gretna we went, just to cover our backs more than anything. However, having done it the way we have, we’ve both learnt a lot and now we agree it was EXACTLY the way to do it. I’ve heard a lot of people say “oh, it’s just a bit of paper, I doesn’t change anything” and, knowing what I know now, in my limited experience of being a wife, I can honestly say, for us, it’s so not the case. Getting married is a huge commitment, easily the biggest and most serious decision I’ve ever made. And absolutely the best one. Obviously I can’t speak for everyone but getting married DOES feel different, almost instantly. Yes the day to day stuff is still the same, the everyday drudgery of running a house, doing the shopping, cooking the dinner, blah blah blah (most of which Andy does, so you see why I married him). It’s more the closeness, the absolute certainty that you’re never on your own. You don’t become the same person, we’re still individuals who in many ways are very different. But our marriage has made us a unit that we weren’t before, we just weren’t. It’s weird as it’s very subtle but at the same time, completely life-changing. In many ways Andy and I are very lucky as we really have had the best of both worlds by having two weddings. It was never really about a massive day for us at the beginning, we just knew we wanted to be married more than anything which is why running off to Gretna made such sense. There was no pomp or ceremony in that little blacksmith’s shop, our ‘vows’ were over in minutes and the only three people who witnessed those vows were strangers to us (the registrar and two randoms from the gift shop). But we needed that, we needed to do something so huge on our own, away from everyone else. We then got to have three months of exploring what being married felt like, to settle into it, to interpret it, to solidify it, so that by the time September 22 rolled around, we were really comfortable and completely in love with being married. And only then was it time to display that to the rest of the world in such a public way. The way we did it is clearly not for everyone and as I’ve already said, there were reasons that pushed us towards it, but looking back I would honestly not have changed a thing about either of my two weddings, they both meant very different, but equally amazing and joyous things to us.

Our party three weeks ago was easily the most fun either of us have ever had – it’s such an intense feeling walking into a church, in an incredible dress, to see pews and pews of your favourite people, some of whom you haven’t seen for years. Their smiles, their tears, the love and support you can almost physically feel. It’s made even more powerful when you’re already married and you’re starting to get a grip of what it’s all about and you want to shout at the top of your lungs “HEY EVERYONE HERE, ISN’T LOVE AND MARRIAGE THE MOST FABULOUS THING?” I knew NOTHING about marriage before I did it, it has surprised and amazed me constantly since and I am so, so thankful, every second of every day, that Andy came along, saw beyond what some people can’t, loved me and married me. The rest of my days, however many I may have, will always be spent nurturing and nourishing my marriage, supporting and encouraging my husband and being forever grateful for what we have. If I had one wish for everyone, it would be that you felt the same as we do. I hope you all do, or will do one day. Thank you to everyone who came along three weeks ago, thank you for loving us and toasting our lives together. It was a blast. Clearly I had to post some pics at least so here are a few…

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Jitters

You wouldn’t have thought it would be possible to have pre-wedding jitters when you’re already #TheMarriedBride as my new friend @LouisaDouma called me this week when we were serving tea and cake to, and watching intense films with a load of pensioners (I’ve just started volunteering with North London Cares, they’re excellent) but as the W draws nearer, I find myself slightly on the hysterical side and it’s usually a combination of excitement and sheer terror. Not because of the day itself – yes there’s still a lot to do and yes I’m worried about silly things like what if there aren’t enough power points in the venue, who knows how to work the lights, what if the mobile bar guy is late? And I’m sure everyone who’s ever got married has felt like that. The fact is you’ve got loads of people coming for what you promised would be an excellent party so you’d better make it so. Luckily I have my secret weapon in @bmbm who has co-ordinated pretty much everything and kept it all on track. And if the worst happens and the bar guy gets lost or doesn’t show, we all go to the shop next door and buy booze.

For me though, there is more resting on this and even knowing it and recognising it doesn’t make it any less difficult. Since April, when we got engaged, all our time has been spent planning to or getting married. We’re technically getting married twice, the run up to Gretna was stressful enough. Being married is heaven and I wouldn’t have changed running off like that. If I could do it all again, I would. Gretna was perfect. The moment where you’re pronounced man and wife is just epic and we’ve had three months of settling into being Mr & Mrs very nicely.

Next Saturday we’ll be welcoming 150 family and friends to London, to see us walk into a church and hear as we reaffirm the commitment we already made to each other. That’s emotional enough right? There will be people there who I haven’t seen in years, and who I may never see again if the truth be told, and THAT’S the hardest thing. I could be being completely paranoid but some days I feel like death is closer to me than ever and might come for me sooner than I’d like. And I see some of these people so infrequently that I’m not being dramatic when I say it’s quite probable I really won’t see some of them again and I really am going to have to work hard to not let that enter my head all day (which is perhaps why getting it down here is a good idea. I can re-read it tomorrow and think ‘well that’s just you being ridiculous. Stick some more coloured tape on a jam jar and pull yourself together woman’).Talking to Goldenballs about it the other day, he said “bloody hell babe, it’s a wedding not a wake” and of course he’s right, I just know that there is a terrible comedown due to me after the W, in lots of ways. The whole of 2012 we have had something to focus on – Thailand, getting through brain surgery then 6 months of wedding wedding wedding blah blah blah (thanks for sticking with me by the way, I know I’ve been a terrible bore about it all). After the W, when I’ve said my goodbyes and taken my dress off, then what? Back to hospital almost immediately after what has been a lovely break to almost certainly more bad news. As much as I quite like pretending I can’t feel things happening now, I think I can. Not horribly, just the cough that’s a bit more regular, the tight feeling down my side that seems to be creeping further down, my handwriting which was once fine and is now not terribly neat and occasionally a bit illegible thanks to having my head cut open and my brain fiddled with. I’ve been off chemo for quite some time now and considering that no drug has worked at all for over a year, I don’t quite know where we go next. I’d like to say ‘well I don’t have to think about it now’ but by this time next week I’ll have had a brain scan and got the results so it’s quite hard not to think about it which, 9 days before your wedding is not ideal. No-one’s expecting anything bad from this scan but assuming I get through that unscathed, I’ve got chest and bone scans in the next 3 weeks and I suspect that’s when life may start getting tough again.

On the flip side, I’ve been using my break to immerse myself in normality again. I sometimes feel I spend so much of my life talking about, dealing with, being treated for breast cancer that for the past couple of months I’ve deliberately looked for new things I can do which are completely separate from that. Spending some time watching films and chatting with older people is one thing. At the other end I’m about to start some volunteering with Hackney Pirates. Not change the world stuff, just stuff that’s nice and doesn’t involve cancer. Absolutely nothing to do with it. And when I do have to go back and face the cancer music, I’d like to keep up these things for as long as I can.

Not quite sure what this post is about except maybe, returning to the top: getting married is brilliant, am scared and nervous and as excited as a small child all at once about next Saturday and everyone’s gone to so much effort to try and make it good. But that little voice that says ‘don’t get used to it, it’ll soon be over then it’ll be time to start making some really hard decisions’ is there a bit louder every day. So luckily I have such a great DJ at the W in the form of @jonwclifford that I won’t be able to hear it for all the chooooons.

Mud and shoes

Last weekend the Boy Wonder and me packed our rucksacks and enough bread rolls and bacon to feed an entire festival, and headed off to Wales for Green Man festival. We haven’t been to one all year and I’d guess we’d normally go to at least two (last year we went to four, that was plenty!). We’ve also both been so busy that a bit of husband-and-wife time was in order, before all the madness of the W overtakes us all (four weeks to go and still a silly amount to do – HELP ME BETH). Apart from the rain (well we were in a Welsh valley), it was nice just to wander round drinking fine ale, eating too many churros and listening to bands we knew and those we’d never heard of.

Green Man is quite small, with a very laidback atmosphere so it’s the perfect place to take kids. We spent many hours watching children chase bubbles and each other, with sticky, muddy little hands and faces. And I think that’s when the penny might have dropped – I thought I’d come to terms with not having children a long time ago but that was before I married the most wonderful man. We’re still very much in newlywed mode and as having a family has never been on the cards – we both knew that, right from the start – we’ve never really discussed it, what’s the point? But that weekend, as well as being lots of fun and we were very happy to have each other to ourselves for four days, was also the first time I’ve felt the really sharp pain of never having my own child. There were split seconds where Andy and I were sat on the grass and I felt like we’d lost something, the feeling you get when you know you haven’t got your wallet or something (not comparable obviously, but you know what I mean). Silly thing is though, how can you lose or be missing something you never had, and were never even likely to have? I know how it is, I accept that me having a baby would be a terrible idea, even if it were possible at all (probably unlikely, I reckon I have a period about every four months, if I’m lucky, at the moment – sorry men reading this). But it doesn’t mean I can’t mourn it occasionally, that baby of my husband’s that I’ll never be able to give him. I know Ellie felt the same too sometimes.

Anyone in my situation has to focus their attention really hard on the short-term; you’re so busy just trying to get to your next scan, through chemo, hoping your brain doesn’t pop again, watching out for every little niggle wondering if this is the start of “it”. Trying to just stay alive and sane and live as normally as you can under the circumstances. But I forget, and sometimes I think a lot of others do too, that ‘normal’ would really be being able to make your own decisions about your life. If I didn’t have cancer, perhaps I’d be sitting here thinking “a baby? No thanks.” But I don’t have that choice any more. Perhaps maybe a part of it is that the very things that were designed for me to create and sustain a baby (BRCA1 has a link to ovarian cancer too) are the things that are trying to kill me apparently so it feels doubly cruel.

 

Anyway who knows? Am sure it will pass. Am starting to get a bit nervous about the wedding, the thought of people staring at us (please don’t stare!) is odd and slightly discomforting at the moment but am sure once the final plans are made and I’m in that dress, that’ll disappear. I’ve been re-reading Ellie’s blog the last couple of days and it’s really made me miss her. So many of the things she talks about are familiar, the drugs, the veins, the portacaths and blood clots, the blood transfusions. But I hear and see glimpses of other things too, undertones of where she was at that only someone who has been in the same place will ever hear and recognise. As she was gearing up to her own wedding and the start of her married life, what else was she thinking? I know how much in love she and Tom were, because Andy and I are the same. Did she too have pangs of real sadness about babies? I know that we are/were both incredibly proud of our relationships and grateful, every single day, to be in love wih our boys, and they would always come first. Babies would have been a bonus, our men are/were enough. I think I know what she’d be thinking now too – “get the shoes on love, they make everything better” and she was right. I’ve got them out of the box a few times this week and whilst I might not have a baby, I’ll always have these beautiful shoes and a husband I am nuts about.

Gamble

Yesterday I went to see Professor Powles for my quarterly chat; I’ve written about him before, I see him every three months for a catch-up on how everything’s going. Long story re the specifics of what we discussed but I told him I wasn’t getting on brilliantly with this new drug and he took a long, hard look at me and said “sometimes doctors can tell more about a patient by looking at them in the waiting room than they can by studying scans.” His suggestion was, maybe it’s time for a break. Yes, on paper, things really aren’t looking good for me and yes, on paper, I’m staring at the bottom of quite an empty barrel, but the thing is I generally don’t FEEL like that. I don’t feel as ill as I should or could or might do in the future. And the ‘quality of life’ thing everyone said would be so important in the future (with an ‘obvously not for ages’ caveat as there are loads of drugs left to try) is becoming an increasingly big factor in how I and my team manage this condition.

This blog has come to be really important to me and it’s never more so than when I go back and read through what I’ve written. I think my last blog post scared a few people as there was obviously quite a big air of despair about where I was just after that chemo session. I’ve actually recovered pretty well and had a good couple of weeks – I’ve been cycling everywhere, in the office more, going to visit friends, generally having a lovely time with my husband and planning what looks set to be quite an epic day next month (argh!). Almost like I’d never had chemo so even I read that last blog and think ‘God yeah, I WAS in a bad way, wasn’t I?’ And that’s a classic example of the complete headfuckery of my situation – one minute you’re throwing your guts up, wondering if you can carry on, it’s so horrible; the next, you’re flying down Spring Hill on your bike. This blog was never really meant to be anything than a way of keeping people up to speed on what was happening, but, vitally, it’s become a way for me to record where I am mentally and emotionally at any given time as it can change almost daily. This is most definitely not a ‘how to’ guide to dealing with cancer, I have no advice, no words of wisdom and I’m aware it can sometimes make difficult reading but absolute raw honesty is all I have to give. I don’t go breezing aound saying ‘yep, everything’s totally fine, I’m really strong blah blah’ because that’s not the case. At all. It’s really, really shit sometimes and it’s really, really not too bad sometimes too.

Anyway, off I go and see Alison today ahead of what was supposed to be the start of my second chemo cycle – I floated the idea of a break to her and she almost instantly agreed, to my surprise. Between the three of us, we’ve reminded each other that a) I’m only ill from the drugs and b) the point is to keep me well for as long as possible. So I’ve been given two months off chemo and, barring any disasters, won’t go back until after the wedding and a good honeymoon, in October. Two months may not seem long to you, to me it’s a lifetime. I know there are risks but really, there are risks in everything – there’s a big risk that drug wouldn’t have done anything anyway, then I would have had to face cramming in 4 more sessions, plus 2 scans, all whilst trying to plan a wedding and live a relatively active life, the life most other 32 year old women have, just for them to say ‘oh no that hasn’t worked either, sorry.’

There isn’t really a day when I don’t think about Ellie and I doubt there ever will be, and it’s at times like this, I could REALLY do with her advice. I wonder what she would do if she were me? I know what she did for herself but we are two different people and, of course, when she died it was probably no surprise to anyone that not only was I grieving for her, I was also absolutely terrified for myself. What had happened to us up until that point had been so scarily similar, I just assumed I was next, and soon. It’s been almost three months since she died and as much as I still miss her for the person she was, and not as a cancer patient, I have also come to realise that we were quite different in lots of ways. As Tom quite rightly reminded me fairly recently, Ellie was nowhere near as well as I am now when went into her final chemo. And I really want to stay well, for as long as I can. But if that means calling a time-out for a while, just for  bit – I can always pick it back up in October if I need to – then I’m willing to risk it. No-one can give me clear answers any more, they stopped being able to do that a long time ago, so it’s all a calculated gamble, with some prayers along the way.  And in the meantime, there are LOTS of exciting things happening, not least the wedding (sorry I promise not to bang on about it forever). There’s lots going on there and I’m lucky enough to have a fantastic group of friends, old and new, all pulling together to make it brilliant. I had thought for a while that I wanted to do something in Ellie’s memory on the day and I’ve bought the same shoes she would have worn for hers. They’re so perfect, every time I look at them I get misty-eyed because I know how beautiful she would have looked and what style she had. It really does feeling like I’ll be walking into that church for both of us.

So that’s it essentially. No more chemo for a while. I have no idea if this is the “right” thing to do, it’s just so unpredictable but I’m learning to rely on my gut instinct and that is currently telling me it’s right. Whether this proves a mistake, well we’ll only see that with hindsight won’t we? But for now, I’m snatching these two months with both hands and, as Ellie would have said, “grabbng life by the balls.”

 

Elvis Safari

So I’ve been on this new drug for just over a week now and I’m annoyed to report that, despite Alison and virtually everyone I know who’s been on it previously (including my mum when she had breast cancer 10 years ago) saying it wasn’t a particularly nasty drug, it’s been pretty unpleasant so far. I started last Wednesday – Thursday and Friday I felt a bit like I’d been in a scrap and come off worst against the other girl. Everything hurt. The weekend was a little better and by Sunday I was gently cycling to church in the brief sunshine. But still not really right by the time yesterday rolled around and it was time for the second hit. I’ve mentioned before I’ve got bad veins, it comes with the territory now, and the one vein they’ve been using in my thumb has now pretty much disappeared. Cue three different nurses having a go: three different nurses, one collapsed vein in my hand, another ‘blown’ vein in my forearm later and they summon the big guns in the form of Elvis Safari (that is his actual name, and yes he’s a bit bored of the “Elvis has left the building” jokes every time his shift finishes, bless him). Anyway he’s a complete legend and managed to get the needle in a big vein on the inside of my wrist. I didn’t really want the portacath back due to the problems I had with the clot last year but it’s looking like a dead cert I’ll have to have another one fitted as I can’t keep being stabbed like this every time I go in. Eventually it’s all done and me and Goldenballs pootle off home, very glad to be out of there for a while. The staff are lovely and they try very hard to make it as ‘nice’ as possible but it’s getting harder not to sit and cry every time I have to sit in “the chair” which probably makes everyone else, especially the other patients, feel really uncomfortable. I’m always the youngest one in there by a long shot and the ‘bleep bleep bleep’ of the various machines seems to set my teeth on edge for days afterwards. I used to be the calm, pleasant, polite patient – now I’m turning into the quivering, snotty mess in the corner and I don’t like it.

I was awake at 3am this morning, steroids you take to stop you being sick play havoc with your sleep, so no real surprise there. Except by 4am, a big bout of sickness comes on which lasted till about lunchtime today. Up come the anti-sickness meds, up comes my twice daily pill to stop my brain melting, alongside what feels like everything I’ve ever eaten, and then some (nice image there, hey?). If last week is anything to go by, I’m set for a few more grim days but will hopefully start feeling better by the weekend, if I’m lucky.

This would all be do-able, fine even, if I knew there was a really good chance that this drug would work and there could be but we all know it’s unlikely. At least I KNOW it’s unlikely. It’s one thing willing yourself to keep going mentally, psychologically and emotionally – and God knows I’ve done enough of that over the past three years – but it’s infinitely harder when you feel so physically shit and the only reason you can think why you’re doing this is in the desperate hope of what can ultimately only be a few more months. And if a few more months means spending a chunk of that time housebound, head in the toilet bowl, pacing the house at 3am wired off my face on steroids, unable to make plans past the next week, unable to go to work, then really is it worth it? Is it? If, at my scan in September they say ‘yes it’s worked, things are no worse’ that would be totally amazing. I’m past hoping for a cure, I’d be happy with stability. But let’s not forget I’m still not off the hook and I’ll have to go through this shitty chemo cycle again and again and again. What kind of life is that? Not the kind I want. I look in the mirror and I see a face I don’t recognise any more. I see someone desperately tired, someone who used to spend every Saturday tearing up a netball court, someone who used to bounce around everywhere, who was happy and who still is mainly, but who is now broken in a way that not even the most beautiful marriage can heal completely. I see someone with no hope of any real plans for her life at 32, beyond just get through this next lot of chemo. Whoopie do. Someone who, more than anything, wants to be able to have her husband’s children and together nurture and raise and teach them all the things they need to know to feel loved and warm and secure and happy and confident. I see someone who feels guilt and shame that, instead of that, I’m putting my husband in the heartbreaking position of never being able to have those things with me.

I don’t like to moan, I know I am so lucky in lots of ways, and my God things could always be worse and complaining is just boring but sometimes, just sometimes, I wonder why I am doing this and how much I have left in me, realistically. I know, whatever anyone says, that I haven’t got that much time left mow and I know too that, after this lot of treatment (2 down, 4 to go) I will have to make some big decisions about what I want from the time I do have left. This kind of talk frightens people but I’m just being honest. If you were in my position, having endured 40 odd sessions in “the chair”, a few big ops including brain surgery, countless hours sat in waiting rooms and everything else, to continually be told that however long they can prolong your life, it’ll only ever be that, then I’m pretty sure you’d feel the same. For now though, we’ve got a brilliant wedding party to plan for in September and it’s all starting to take shape nicely. After that, who knows? Never say never I suppose.

Terry

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 a size 6 and I don’t do heels very well

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.

Getting spliced

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

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