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Cancer and other stuff

Archive for the month “April, 2012”

The power of tweet

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.

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Tying the knot

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

The best time of your life

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.

The Boss

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.

Comedown

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…

Tis done

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.

Big day

I’m writing this from my conservatory. When I look out, I can see huge great white blooms of blossom in the garden, Goldenballs is clattering about in the kitchen making dinner, complete with home grown plum crumble and I’ve had a visit from my bestest and oldest friend in the world today. Days like this and all is right in the world. Days like this, and I can’t bear the thought that I might not have many more days like this. It’s just too cruel, which is why I refuse to believe it.

Tomorrow I’m going into hospital to have my head scanned again so the surgeon knows exactly where to cut into my head, with a saw. On Tuesday, he’ll remove a small part of my skull, (obviously) very carefully cut out a 1.4cm tumour from the left parietal lobe of my brain, seal it to stop it bleeding and stitch me up again. Apparently I will then spend a little time in intensive care before they move me onto the main ward, where everyone else will have had some form of brain surgery as well. I could, however, be home in as little as three days and I could have my weave glued back on within a couple of weeks. I’ve only been wearing a normal wig for 2 days but Goldenballs has already seen my little fluffy head. I hate it, I feel so much like a cancer patient and my beautiful stick-on hair is SUCH an antidote to that. Having to be almost completely bald, in a hospital for brain injuries frightens me. Really it does. I cannot begin to get my head round having a brain tumour which is why I’m glad they are getting it out of me fast. I have been assured that I may never have a repeat of this problem again. It’s certainly not the case that, once you have brain secondaries, you’re immediately toast. Yes, statistically it puts a whole different agonising slant on it, in that the numbers suddenly start looking a whole lot bleaker. But I have to keep remembering the reassurance I’ve had recently from my new brain doctor Naomi (who I will see, alongside Alison, every 3 months now so she’s about to come the Boss #2). In addition to all the other clever doctors I have surrounding me, my two surgeons and my breast nurse, my team is now massive as it includes Naomi and my brain surgeon, Mr Kitchen. I have to remember that. Living in London, being under Alison’s care, allows me access to THE BEST specialists. If they say there’s a good chance I’ll recover fine from this surgery and never have a problem again, then I have to believe that. A lot of women aren’t as fortunate.

I’m not out of the woods yet, not by a long shot – it’s a precarious situation to be in, one that has been always my biggest fear, but it doesn’t necessarily mean this is the beginning of the end, or anywhere near the end, as my good friend Ellie (thanks beb x) has pointed out. I’m going to have to stay calm, let them do what they have to do, rest up a bit and get back on track with chemo as planned in a few weeks. All’s not lost yet, am just going to somehow find some more balls from somewhere. Grit my teeth and get on with, even though I’m SO scared. I’m in good hands, GREAT hands, and they wouldn’t be doing what they are about to do unless they absolutely had to. See you on the other side I guess – really appreciate everyone who has sent good vibes and wishes, has meant a lot to both me and Goldenballs x

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