tiltingheads

Cancer and other stuff

Archive for the month “February, 2011”

Sunny day

Today is sunny, and I don’t just mean the weather. It’s amazing what a few rays of warm sunshine can do for your overall mood and it’s especially amazing when you couple this with a very positive appointment with a glorious new medical team.

This morning I met my new oncologist, Dr Alison Jones. She is BRILLIANT. She specialises in secondary breast cancer, is a government adviser on cancer and is generally a bloody great woman. With a fantastic bedside manner and a roll-your-sleeves-up-and-tackle-this-bugger-head-on attitude. Very much my kind of woman.

I’ve been completely bombarded with information today and I’ve got a week to regroup, swot up and get ready for the next stage of this mental, mental journey but to summarise, I am eligible for these new trials. They’re at stage II which means the very best brains have got past the head-scratching, not-really-sure-how-this-is-going-to-pan-out-let’s-guess-at-a-dose-and-see-what-side-effects-crop-up stage and they know a little more about them now. Side-effects are apparently minimal as they’re such clever drugs. None of this bumbling around your body shooting out all the good cells too (so that hideous wig can stay in the cupboard and I definitely won’t be shaving my head at Glastonbury this year, HURRAH). They just mess with the cancer cell’s mind. Which is what we need so they can stop messing with mine. I’ll be the only person on this trial at UCH too, so I can expect extra special care and attention which, after the past 6 months of general crapness and having to sort everything out myself with little medical support, is a massive bonus.

So what’s next? Next week I sign the consent form and start the process of a squillion tests on my heart to make sure my tough little body is ready, and off we go on 14 March. It’ll be 5 days a week, one week per month, with CT scans on my lungs every 6 weeks to see what effect it’s having and various other bits and bobs in between. Before that I need to have a little reservoir thing fitted in my chest so they can get the drugs in me as my poor little veins are shot from the first round of chemo I had in 2009. So that might make my good boob look as weird and knobbly as my faux one but them’s the brakes. Oh and I’m not to lose any weight apparently. Another biscuit? Oh, go on then, for medicinal purposes obviously.

How do I feel? Going from utter despair and crushing disappointment on Tuesday to pure hope today has been a rollercoaster and I’ve been thrown so much information this week which is totally mind-boggling. It’s all stepped up a gear very very quickly now and I’m just about trotting along to catch up but the good thing is how this new team have made me *feel*. Edwina, the fabulous Aussie nurse who is leading this trial (“alright babe, follow me babe”) is a little Mary Poppins, according to my friend Katie who came today. Pulling things out of her carpet bag and weaving a bit of magic, in the form of managing my life and looking after every aspect of my care, as well as the treatment itself. I won’t be able to do anything or go anywhere without telling her and that’s what I need more than anything right now, the sense that someone is *on it*. And my God is she on it. I’m so much more confident that I have the best minds in London on my side now.

My life will be even more dominated by cancer from now on which saddens me, and I will have to spend a lot more time in hospital but that’s the reality of this disease and I have to do what I can to stay well. Luckily I have fantastic employers who couldn’t be more supportive and I know they’re with me every step of the way. I am a very lucky girl. And I’m determined to stay normal. I’m living with cancer, not dying of it.

Of course I’m apprehensive and I must caveat this by saying there are no guarantees this new treatment will work. But if it’s one thing in my armoury to try, then I’m game.

BRING IT ON.

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D Day

OK. So I went for my lung scan results today, fully expecting the news to be good – that it’s all stable, maybe even that the things in my lungs had shrunk again, particularly after the first scan showed such good results. Take your pills, come back and see us in 3 months.

Sadly though, cancer doesn’t do what it’s supposed to do and just when you think you’ve got some kind of grip on it, off it goes and does something completely different. It’s clearly a very clever disease unfortunately. Put simply, the drugs have stopped working. The drugs that lots of other women in my situation stay on for years at a time with no problems, the ones I was hoping to at least get a couple of years out of, have only given me a measly 3 months. So now it’s time to think again.

Things will change quite rapidly over the coming weeks and months I’m sure, so bear with me but on Thursday I go and see a new oncologist who is leading a trial for what are called PARP inhibitor drugs, which are particularly being used on some groups of women with BRCA1, triple negative disease. Step forward yours truly.

At the moment it looks like I might be eligible, but won’t know this until I see the doctors again on Thursday. These drugs are at a very early stage of development but so far, from what I can gather, the results are generally quite promising. So all is not lost.

Today has been a huge, huge body blow, one that I really was not expecting at all. I had done all the ‘right, think about this logically, stay positive, it’s all going to be good’ stuff, and it’s now getting harder and harder to do this when you’re continually given bad news but I’m not done yet. This horrible nasty disease has not defeated me. I’m just going to have to stay calm and focused and get those boxing gloves back on, as it’s time for the next round.

More to follow on Thursday …

Today I hurt. This week has been truly horrible. I had good news on one scan, which I’m obviously hugely relieved about. Just the biggie on the lungs to go now, Tuesday is D Day. I don’t normally blog this regularly and please forgive me if this is maybe all becoming a bit boring but just today, I feel like I am on the verge of losing it a bit. Not just about scans and practical medical stuff, but about everything. This whole situation. Trying to get my head around how the hell this all happened and what I am meant to do. Or think. Or feel. Have you ever been so horrifically overwhelmed that you can hardly think or rationalise or make a decision about anything? Today is a bit like that. I’m emotionally burnt out. And it’s really scary to feel so lost and baffled and out of control. Like your mind is not really your own and neither is your life any more. Emotions are dangerous, they can send you into such a huge tailspin that it’s like you’re just being driven by them and no amount of ‘right, think logically’ will help. I’m a practical, well-educated, largely sensible young woman. I’ve dealt with crises in the past, as we all have, but this? I have no idea how to tame this surge of utter despair. And I’m gutted as I thought I was doing OK. I’m scared of being scared. I’m scared what fear might be doing to me physically and psychologically and today I’m not winning this battle. I know it’s temporary, I’ve been here before and have bounced back and I know I will again. It’s just not been a fun week and it’s got me in a headlock. It’s really, really boring to have this madness in my life and for it to be the first thing I think of when I wake up, and the last thought in my head before I fall asleep. I will have lots of good days ahead, I know that. I’ve just got to try and get this raging head thing under control, which has never really been my strongest point. I hope I’m not coming across as some whining, complaining ‘victim’ as that’s not what I feel like day-to-day. I guess today I just need to get it off my chest to make room for the courage I know I need to find more of. It’ll get better, promise.

To my Daddy

So we’re halfway through the big week and so far the news has been good. The MRI was clear meaning there’s no sign of anything icky lurking in my good boob. Big relief, having a mastectomy is not fun so I was kinda keen to avoid a second one.

The other big news this week concerns my papa. Yesterday he was told that the wonky gene has come from his side of the family, that he’s a carrier too. Luckily my sisters are in the clear so as far as we know, it’s just me and pops. Which is a good result. BRCA1 mutations tend to affect women badly, hence what’s happened to me, twice, but not men. So medically it should be ok.

What I hadn’t anticipated though, was the shock and bewilderment my dad now must be feeling. I cannot imagine having to watch your baby daughter go through something like this, and it’s made worse by the fact I know he didn’t see this one coming, that he honestly believed there had been some kind of hideous mistake. And I know exactly how that feels, I’ve been there plenty of times in the last 2 years. I am so sad for him.

But Daddy, if you’re reading this, I love you to the moon and back and it’s all going to be OK, at least we know now. Maybe we haven’t always been as close as we could have been over the years but you’re honestly one of the first people I turn to when I need help and I’m so grateful for that. And hey, look at this way, you and I now share something that no-one else in the family does. And that feels nice, it’s like I’m not alone any more.

Keep being you dad xxx

Wobbly

People often say they are amazed at how well I seem to be dealing with things and largely I surprise myself too. It’s the weirdest thing – anyone who’s been through any kind of trauma will tell you, you don’t really know what you’re capable of until you’re dealt a crappy hand. It’s not like you go ‘hmmm. I’m going to actively choose to be brave, and strong’, you just have to be. You can either collapse in a heap or crack on and for me that’s no kind of viable choice. It just is, you just do.

I don’t really know how I feel day to day at the moment – sometimes I can almost forget what’s going on, and that little fluffy cloud I talked about in an earlier post is barely a puff on the horizon. I think this is a good thing, my goal right from
the start has been to learn to live with my condition. I have to live and be alive and be grateful and happy. And most days and weeks, I truly truly am and I’m so pleased to have been given this gift of perspective, even if it’s come with a big fat sting in the tail.

This month is going to be a weird one and I’m facing a pretty heavy duty medical week quite soon. Last week I had an MRI on my ‘good’ boob. For those who don’t know, I have a faulty BRCA1 gene. You’ve all got one, it stops cancer cells starting to grow, mine’s just a bit wonky and doesn’t work properly so it explains why I’ve had breast cancer twice in 6 months (bit of a Eureka moment for my docs there). Because my risk for BC is pretty high, the initial plan was to say bye bye to both boobs before the little bugger showed itself in the other one which is possibly more likely than not. That was supposed to happen in September but the lung thing put paid to that. So rather than have any more what is quite major surgery (they cut your back open and drag a big muscle round to the front to make a Roboboob, it’s very clever), we just need to keep a major eye on poor little boob hence a yearly spin in the ravey washing machine (all bleeps, clicks and vibrating). The results of this are due on 18th and as much as I’m doing the ‘think positive’ thing, I have to admit to feeling a bit shaky about it. It can be a bit of a mental battle to ‘think positive’ when you’re battered with bad news (“your cancer has come back, you’ve got a faulty gene, oh and now it’s moved to your lungs, whoopsie” – all within 3 months). So whilst, technically, it should be OK, waiting for test results is bloody hideous and I have a bit of a heavy heart right now. In addition, the same week I have my next lung scan and I can’t even tell you how scary that is even though the first scan was good. The problem is that that will change apparently one day and the news will starting getting less good (I say ‘apparently’, it’s my disclaimer in case I do a Lance Armstrong).

Anyway I’ve rambled a bit but I guess what I’m saying is that if I’m a bit quiet lately it’s cos I’m trying to keep an internal lid on being frightened and to deal with fear in a calm, logical way, and not let the little shit overwhelm me which it can do quite easily when you have lots of hospital bobbins to deal with (bobbins, best word ever). In the meantime, I’m off to Tel-Aviv tomorrow for a break and some fun with my very cool Israeli friends which I think will set me up for when I get back. I know I have lots of people rooting for me and I hope to be able to report back with some big thumbs-up in the next couple of weeks.

Please also say a prayer for my lovely friend Laura who is also facing some scary tests the same week on new baby Wood who is due to join us in the summer, and whose beautiful little brother Stanley tragically and very suddenly passed away last year when he was just a teeny tiny man with no warning that anything was wrong. I know she would appreciate those prayers. Like me, she and husband Gordon face an immense mental and psychological battle over the coming months but if there is anyone who can do it, she can. I am constantly amazed and inspired by her. Go girlfriend xx

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