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Cancer and other stuff

Archive for the month “March, 2012”

Lucky

I never thought I’d consider myself ‘lucky’ to have a brain tumour but in terms of how bad it could have been, apparently I’ve had a bit of a result. It’s in a position that means it’s fairly easy to get at, there shouldn’t be any complications and I won’t need any further treatment afterwards except for regular check-ups. I saw the brain surgeon today – the most relaxed man I’ve ever met and it sounds like he does this sort of stuff in his sleep. Having a fit was the most terrifying thing that’s ever happened to me but it was a positive thing really; had it not, the little bugger could have kept growing and causing all manner of problems so they’ve caught it early and it’s totally sortable. I’ll be having the op either later this week or early next, so just sitting tight and chilling till then. Once it’s over, it’ll be a couple of weeks recuperation then starting Eribulin as planned. Oh, and then I suppose the psychological catch-up will hit eventually but for now it’s all looking as good as it can be. I’m a very lucky girl indeed.

Mrs Bump

Apologies, these blog updates are coming thick and fast at the moment but things obv moving quite quickly now. Which is GOOD.

I had a call from Naomi Fersht, the brain doc, this morning. The good news is the MRI didn’t pick up anything new so there’s just the one tumour that they can see, near the top of the brain which is as good as can be expected at this stage. She wants me to come in on Monday to meet the brain surgeon as it sounds like they are keen to get in and whip the bad boy out. Obviously I’m pleased things are moving but brain surgery? Sounds a bit sci-fi but am sure they do this sort of thing quite often and hopefully the recovery will be quick and I can get back to normal. Luckily my weave can just be removed temporarily while I have my Mrs Bump bandage, then it can just be stuck back on afterwards. Everyone’s a winner.

Noggin

Just a quick one to say, no real update as yet. From what I can gather, Alison has passed this little problem to a colleague – Naomi Fersht – who is a brain specialist, based at Queens Square Neurological hospital. She’s reviewing the CT and MRI scans and will decide what happens from there.

Am trying to remember what happened, and can’t really – it’s all quite fuzzy. I’m going up to my friend Laura’s today (on the train – bye bye driving licence apparently), then will be back in work tomorrow. Desperate to try and regain some normality, whatever that now means. I know that brain mets can be treated very successfully so all not lost yet although yes, clearly it’s been a massive shock. Especially for my darling boy who I am worried sick about. But no doubt more will become clear in the next week or so.

Thank you to everyone who has sent well wishes and good vibes; I’m banking them all xx

On way home

Thank you for all the lovely emails and texts the last couple of days – very flattering. If I haven’t responded it’s cos it’s been a bit hectic! Anyway I’m now on my way home with a bag full of meds. From what they can see on the CT scan they think there is just one tumour, near the top of the brain which I think is as good as it can be, but the results of the MRI will determine what happens next. Am seeing Alison Wednesday to get a plan together. If it’s contained then it sounds like they’ll operate.

Rest assured I am ok, bit dazed and v tired but my mum is here now fussing around me, bless. Obviously watch this space for more info!

Spoke too soon

Yesterday I was on a course when about halfway through I suddenly started feeling very peculiar – like everything had gone a bit fuzzy and I couldn’t work out what was happening. Next thing I remember is waking up in UCH, where they told me I’d had two fits. They then did a scan which revealed a brain tumour. That’s all I know without seeing Alison which might not be for another few days. I can’t go home until they’re sure I won’t fit again so I’m on strong steroids.

I’m gutted. And confused. And terrified. And thinking that holiday may have cost me dearly, after all. More to follow I’d expect…

What is it?

I had my scan result today and it was less hideous than I feared. The things in my lungs have got a bit bigger but, crucially, there is no sign of anything new to worry about. My liver is clear, as are my bones which is a pretty good result all things considered. If you’ve read this blog recently you’ll probably have guessed that I really was frightened this time. My logic ran like this: if I had 3 months on the most hideous, gruelling drug I’ve experienced so far and THAT didn’t stop it growing then it would be an absolute miracle if, having had no treatment at all for 2 months, the sodding thing hadn’t spread like wildfire during that time. To hear it hadn’t was, well, just very good.

Statistically, things still don’t look wonderful. Every different type of chemo you have has a smaller success rate percentage-wise. Percentage-wise, there’s probably around a 30-40 per cent chance – at best – this next drug, Eribulin, will do anything. I know this statistic. I also know the statistic about life expectancy of triple negative, BRCA1 metastatic breast cancer patients and it doesn’t make for happy reading. But something is working. It must be. How else could I have had all this time off treatment and not be riddled with the damn thing? Statistically I should probably be dead by now or at least in a lot more trouble than I’m in now but instead I’m bounding around, large as life and twice as ugly.

Today was a good result. It was unrealistic to think there was a chance nothing would have moved on in that time off but, my God, it could have been worse. A LOT worse. I should be horrified about going back on treatment now and obviously it would be a lot more pleasant if I never had to have chemo again but I’ve realised that this whole disease is one little stand-off after another. It whacks me one, I feel like I won’t recover but then I come bouncing back and suddenly it’s anyone’s game again. The last few months, the last few weeks particularly, have been tough – I was due a bit of good luck and I’m prepared to thank my lucky stars, and Alison obviously, that I didn’t just pay a very hefty price for that treatment break and our holiday. It could have gone horribly wrong but, touch wood, it hasn’t at the moment so I’ll bank that time off, play nicely and get back in the plastic chair with the bucket of hot water and invest some time and energy into the next little squabble, whenever that may come. I’ll be on this drug for 2-3 months now so no bricking it about scan results for a while. Just head down, get on with it and see how we go.

I’m amazed I didn’t get *really* shitty news today given all the ‘statistics’. While my mind may have been sobbing under a blanket, not answering the door, my tough little body has rolled its sleeves up and punched the cancer in the nose. Something has worked. I don’t know what it is. Could it be the various herbal potions I throw down my throat on a daily basis, the vitamin C we max out on, the home-cooked food I am treated to every day? Could it be the unwavering belief of my parents that I will get better one day, even though that drives me mad? Is it the arms of my friends that link and catch me when I call out to them, or is it the feeling of being so utterly in love and happy with the partner I have found? Is it the kindness of people I know and people I don’t, wishing me good things and praying for me? Is it a combination of all these things? Or none of them, and just weird luck? I don’t know, I can’t really explain anything that goes on when you have cancer. It’s all mad and that’s why it can be so hard to treat, it just doesn’t behave the way it should. The last few weeks has been tough but I feel like I’ve been given a bit of breathing space today, just the tiniest bit. Enough to build on I hope. I’m ready to start treatment again. I know how wonderful Alison is, and she just astounds me with her brilliance sometimes. I am 100 per cent sure I am in the best possible hands.

Yellow

If you don’t already know, I’m a trustee at Breast Cancer Care. They’re a great support to women with breast cancer, at whatever stage, and my position means I get to be really involved in helping shape their services, their fundraising and how they’re run as a charity facing uncertain financial times. So they take up a lot of my thoughts. However, there is another organisation that I’m more familiar with in some ways – Marie Curie.

To cut a long story short, I’m feeling no happier than last time I wrote – there have been scans, surgical appts, diary shuffles, lost prescriptions, medical confusion. Blah blah blah. Plus I’ve actually been really busy in work the past week or so. Today I went to the Marie Curie hospice, the place I regularly visit for counselling. I have a palliative care team there, including a doctor and a specialist care nurse that I see every couple of months. They just check I’m doing OK, whether I need any support from them, whether I have any questions. I saw the nurse today, she asked how I was and I burst into tears. She very gently asked how she could help, and I confided how confused I was, how afraid I was of dying and who was going to help me if things started getting bad one day. We then discussed the various types of support they could offer – as an in- or out-patient, whenever I might need it. And I felt better just knowing there were people who actually know how to deal with this stuff. Stuff like abject fear. Utter bewilderment. Grief. Bad stuff, generally.

It’s coming up to 3 years since my first diagnosis, 3 years since this whole nightmare began, and it’s tough. Especially when I think back over everything that’s happened during that time – and there has been a lot – and realise how difficult certain situations have been and how even Alison, who I adore, isn’t a comforting presence any more. How can she be? She has to tell me the bad stuff in the first place. The last 3 years has involved some very different waiting rooms – from the GP, to the mammogram place, to the consultant’s office, to the oncologist, to the research clinic, and finally to the hospice. And actually, of all the places to end up, the hospice is the most peaceful place I’ve experienced so far. Everything is geared to you, nothing is missed, there’s never any delay or the general sense of chaos there can be in some hospital departments. Just quiet. And empathy. And patient-centred care to the letter. They don’t sit me in a chair and gently break bad news, they don’t ask me to make any difficult decisions and I don’t get that sick-to-the-bottom-of-my-toes feeling when I go in there in case they tell me something awful. There’s no “think positive”, “keep fighting” – just absolute calm and not to get all diva-like, it’s “all about me” and what I might need as a person trying to somehow live a life with this black, black cloud hanging over me, rather than a patient. I’m allowed, in a way I’m not anywhere else, to just BE. The mask of “I’m fine, I’m fine” gets left at the door.

I cannot tell you how frightened and confused I am at the moment (I know once I have a plan for next stage treatment next week, I’ll be alright – it’s just the uncertainty) but I can tell you how much better I felt today after visiting Marie Curie. They’re experts in palliative care, which isn’t about dying, it’s about improving people’s quality of life at whatever stage – and I speak as someone with a potentially life-threatening illness who is very much alive and well. I suspect this is the start I’ll have of a long relationship with Marie Curie, I hope so anyway, so I can’t stress enough how important it is to at least just buy a daffodil if you see people selling them this month. Discussing it with my friend Anna tonight, she called those nurses “living angels” and she was spot on, that’s exactly what they are.

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