tiltingheads

Cancer and other stuff

Archive for the month “October, 2012”

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.

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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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