Posted by: stelladuffy | March 21, 2014

sometimes, being brave IS wearing makeup

I’ve spent half of today wondering if I should show a semi-naked picture of me to facebook and twitter. It is of my (annoyingly, still, 6 weeks on) not-healing/open-wound post-mastectomy ‘breast’. (It’s not a breast, it’s some stomach tissue and some stomach skin and some not-coping-original breast skin – not coping because it had radiotherapy during my last breast cancer – re-modelled into a ‘breast’ shape, it’s most definitely not an actual breast.)
I thought it might be a kind of punctuation mark in the idea of what, exactly, ‘raises awareness’.
I took a bunch of pictures, they’re very ugly, we’re not used to flesh looking open and raw and red and … yellow. ANYWAY, I didn’t post them, partly because I knew that if I did post them, I would feel very exposed and vulnerable and tonight, 41 days, not quite 6 weeks since my surgery, I was hosting Stonewall‘s annual fundraising dinner. And I needed to feel brave because Stonewall’s issues and causes were bigger than my own personal twitter and facebook furies today. (Sometimes they align, not always.)
It’s the big one, it’s at the Dorchester, it’s dead flash, it really matters because it raises money for loads of vital work … and it still terrifies me, even though tonight was the third time I’ve hosted it, because it’s so very LIVE. And stuff happens, it changes.
It changes as the night progresses, as it should.
Tonight Christopher Biggins proved what an utter star he is as he totally flew with about a dozen gay women from all spheres of UK life (many of them telly-famous, + the likes of me) combined, utterly live, non-planned, auctioning themselves to make/serve and host a dinner. At Mary Portas’ place. Cooked by Allegra McEvedy and Jack Monroe. In one fell swoop it raised £23.5k. (And I promised myself as a waitress. I am a rubbish waitress.)

So, today I didn’t post a pic of my still-unhealed breast wound. In truth, I still think it is far more likely to provoke breast-cancer-awareness than any amount of non-cancerous women showing themselves without makeup (and if we do want to address that massive issue, the makeup one, a proper issue, all by itself, that needs its own awareness campaign, I’m totally there, it’s about bloody time, eh, feminism?, but I’d rather not conflate the two) … so I will post this one instead.
It’s what we looked like, having ‘auctioned’ ourselves for Stonewall.
It’s what making a difference in workplaces and schools and care homes ALSO looks like.
Because that’s what the money raised goes to. Yes, it’s great to be able to get married, I want to, I’m glad to, but the legislative part of Stonewall is a very small part of the overall work it does.

And meanwhile, from the personal pov, … sometimes it IS what you look like, on top, that matters most, that can make a difference. Not how scared, shy, worried, upset, vulnerable you feel underneath. How scared, shy, worried, upset, vulnerable I feel underneath.
Because we ALL feel those things underneath, all the time. I promise you.
Right now, when my own skin is failing to heal, failing to protect, I feel it more than ever before. I feel the rawness of my humanity, right on the top of my bones, like an actual feeling, one I have no words for.
Tonight, I put on my ‘brave’ mask, and I did the (volunteer, obv) work that was asked of me, work I had agreed to do before I was diagnosed – to support and promote a cause and an organisation I care about, passionately.
Tonight, dressing up, and wearing makeup, standing up and improvising my script in front of 550 people, was far braver than a photo of a bare-faced me.
Because I was standing scared – and standing anyway.

And here’s Stonewall’s immensely powerful new campaign – linking ALL bullying, vitally acknowledging that all prejudice is part of a continuum, and we need to fix it ALL, not just our own bit of it. No Bystanders

Right then, back to changing the world with Fun Palaces.

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This is what the women who spontaneously came together to create an un-organised auctionable ‘lot’ looked like after the bidding. (Shocked – and delighted- that anyone would pay that money for that rabble!)

Four weeks ago, two days before my surgery (mastectomy/reconstruction, breast cancer no 2), some friends (some Buddhists, some not, and one wife) and I all determined that today, March 5th, I would be able to speak for Fun Palaces at the Southbank WOW Women in the Arts day, that I would be able to co-host (with Sarah-Jane) our Fun Palaces party. That I would be strong and able and capable and in a place (emotionally as well as physically) to share Fun Palaces with the most astonishing array of arts women gathered in the UK for the past 20 years or more.
The Buddhists chanted for this, the non-Buddhists equally determined and dreamed, and they all PLANNED and worked towards helping Sarah-Jane and I create a day that three weeks ago felt like an impossible dream from a St Thomas’s bed with a view of the RFH.

And so … I was capable of doing it, and I did do it.
And at 3pm today I VERY NEARLY went to find some piece of floor I could just lie down on, I was so tired and so desperate for a lie-down, and so very OUCH. (It really hurts this reconstruction* lark.)
And tonight the party was made by Jude Kelly’s astonishing, inclusive, supportive SouthBank who gave us the space, and us, the Fun Palaces (ie, me and Sarah-Jane, making it around our other jobs), who provided wine and sweets and cake, and our friends – OUR FRIENDS – who made the space SO pretty, laid the tables, served the drinks, made the Fun Palaces slideshow, the music, the little FP-related tags on the glasses, made everyone welcome … because they too love and live Fun Palaces.
Because they too, get it.
Get what it might do, what it might become, the change it might be.

So we did it. Thanks to Jude Kelly and Hannah Bird and the SouthBank, we were part of a day where we shared the dream of a community-led arts endeavour, that reaches into every community, into every part of the arts, and is led and run and enjoyed by every kind of person. A day in which we helped some more people understand that what we’re trying to do is both incredibly simple (does your community or locality want to engage/share culture/create art/learn or grow and have fun together at the same time?) and incredibly world-changing (if they do, it might make all the difference that they are talking to each other instead of behaving like none of us have anything in common) – it might change the world.

It’s totally simple and it’s totally world-changing. At the same time.
And it’s really worth getting out of (a sick)bed for.

Thank you Ali, Amie, Colleen, Connie, Emma, Hannah, JenL, JenT, Jo, Maggie, Mark, Martyn, Mary, Tom.
You make Fun Palaces.
We make Fun Palaces.
Fun Palaces IS (are?) the people who make it.

(Whoever comes is (are?) the right people …)

* it’s the wrong words, that’s part of why it hurts. If they said tissue and bone amputation followed by skin graft and tissue graft, well hey, then I think we’d EXPECT it to hurt. “Reconstruction” sounds way too do-able, way too ok. It is do-able, it is not ok.

Posted by: stelladuffy | February 28, 2014

gratitude & stuff …

Hopefully last cancer-y post for a bit.
It is three weeks since my surgery, two months yesterday since this new cancer journey started.
The big, pressing, everything-immediate section of the journey is almost over, I can feel myself beginning to head into the next part, the loss/recovery/healing part.

Yesterday, I saw the physio at 8am (physios are such brilliantly sporty/early-start types, aren’t they?). She was very useful, did some massage (painful, but good) on the tricky underarm/shoulder bit, showed me some good exercises, and has given me lots of hope that I will regain full mobility in my arm and shoulder, as I did after my first breast cancer surgery fourteen years ago.

Then we had a family funeral, my brother-in-law Alan. Because of the wide age range of us seven children, and me being the youngest, I do not remember a time in my life when Alan wasn’t around. He will be sorely missed.

And then we went to see my breast cancer surgeon. This is the first time I’ve had a chance to talk with him since the surgery. He thinks I’m healing well, even though the blood and the blisters (from having had radiotherapy before) are a bit daunting to me, he thinks it’s all doing okay.
(By ‘all’ they mean the mastectomy and reconstruction, but I’m beginning to think these are the wrong words. The words ‘Tissue, blood vessel, skin and bone amputation, followed by tissue and skin grafts’ would make much more sense of what has actually taken place – and why it hurts so much. The bone bit! They omitted to mention, pre-op that they’d be removing a chunk of rib! Now that I know this it makes way more sense and I can understand the pain far better, and work with it far better as well.)
Regardless of the wording, the best news is they were able to move all the cancer they found, and this time I don’t have to have chemo again. I can’t have radiotherapy (in the same place) a second time anyway, but having been down the chemo route once before, I know I’m fortunate not to have to go through it this time.

And so we come too that term ‘fortunate’. Another dear friend has had brain tumour surgery this week, for the second time. And his surgeons think (so far) he’s going to do all right, there may still be other treatments and other surgeries in the long term. And I note that people are delighted for him, as they are for me, and I’m delighted for both of us as well. I’m delighted that we’ve made it through surgeries, that we’re doing okay, that we are able to cope with pain, we have modern medicine that can help us, and we both also have a deep sense of the spiritual that we believe also helps us, to heal, to cope, to keep on.

And there’s also a small voice that asks why isn’t everyone else also jumping for joy that today they don’t have to have chemo either? That today they don’t have to have surgery? That today they are not worried about losing their lives? Why don’t ALL of us, when we’re not in pain or grief, not dying (and yes, of course, we ARE all dying, all the time, dying a little bit more just as we continue to live) – why don’t we all feel this gratitude all the time?

Because we could all do this, we could all wake up with joy that we are not facing a day-long surgery, that we are not facing horrible medical treatments that might save our lives, that we’re not having to do painful exercises to regain a mobility that we and many others may have taken for granted, that we are here, and that right now, we are alive and therefore have a chance to make a difference in the world.

Just because I and my friends (five of them, all different cancers) who are going through cancer at the moment (and other diseases! other diseases are also available, and prevalent! plenty of friends with other diseases too) are managing to keep going, does not mean that other life difficulties have gone away.
Does not mean that those of my friends-who-are-sick who have children are not also concerned about their children. (And not even in the what-if-I-die stuff, but just the usual day to day stuff.) The same for the friends-who-are-sick who care for elderly relatives.
Does not mean that my-friends-who-are-sick are not also worried about work.
Does not mean that my-friends-who-are-sick don’t also have concerns about wider family and friends, about the state of the world, about it all.

Being ill, being in pain, being in the process of coming through it, does not mean that usual concerns disappear at all, sometimes it actually magnifies them.

But what illness, and facing our own mortalities can also give us, is an ability to notice that it is good to stay alive. That’s why so many of us are prepared to put ourselves through a huge amount of pain to do so. All the other concerns of life go on, but the concern of staying alive becomes, for a time, paramount.

And so I wish for anyone NOT currently in pain or concerned about their own mortality, or grieving the loss of a deeply-loved one, a moment to consider that being alive is good in and of itself. That good health is great good fortune in and of itself.
That even adequate health is great good fortune in and of itself.
That being alive and being capable of making a difference in the world, as we all are, is good fortune in and of itself.

I wish this for me too, I note that even now, three weeks after surgery, I think it’s okay that I can get out of bed and not wince in pain, that when I do wince it’s a smaller version of the wincing and yelping of two weeks ago, one week ago, two days ago.
I wish that I, in future, when I am not in pain, when I’m not worried for my actual life, will also be able to remember that simply not being worried about dying or hurting or being hurt is, in itself, a good thing. Not even a normal thing, but a GOOD thing. That no matter how busy my day, how concerned I am about other people I love or care about, how worrying or upsetting work things may be, that simply being able to get out of bed without wincing in pain, that ‘merely’ planning ahead for the next six months, is a good thing in and of itself.

It’s bigger than The Glad Game, it’s more than counting blessings (and while it’s easy to write it off as sanctimony, I’m going to risk saying it anyway) – it’s simply knowing that being alive AT ALL is such an accident of fate and circumstance and universal (non)design, that to forget gratitude for merely living, to forget to use it well, to forget it is of value, that we can each be of value, would be a damn shame.
I wish it for everyone, not just those of us currently being reminded of the value of life.
And I will try to remember this feeling. I’m sure I will need to.

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