I’m going to start with the important stuff. My sister is declining rapidly and has been given months, maybe weeks to live. I am going to set off to visit her in about an hour and I have little idea what to expect. She has been basically comatose for the last few weeks but seems to have improved slightly in the last couple of days. I would just like her to be awake for a little while so I can tell her I love her and give her a big cuddle. Not really much else I can do at this point. Not really much else I can say either.
So I am going to move onto a less important, yet related topic. This ‘Bare Faced Selfie’ Facebook phenomenon. It has caused some controversy and given my own diagnosis, family situation and mutated gene – I feel qualified to comment.
I have always hated the Facebook ‘Breast Cancer Awareness’ games that have been going around for a few years. You know the ones – “Post what colour your bra is in a cryptic cliquely fashion and giggle about it” – etc. Achieve fuck all and making cancer into a game is clearly offensive. That’s not my opinion – it is a fact. This particular social media phenomenon has at least done some good in the end. Money has been raised – I can see the positives. Maybe a few people even checked themselves and who knows – it could even have saved a life. I say ‘in the end’ because that is not how it started. In my newsfeed it started with narcissistic people posting pictures of themselves with an inane comment about ‘awareness’ followed up by a swathe of “ooooh you look fantastic… and for such a good cause too!” comments.
EMPTY. MEANINGLESS. GESTURE.
No mention of donating money. No mention of checking yourself or how to do so. The only thing they were raising awareness of was their own face.
It was only when a few people with brains and compassion responded to this by posting pictures of their donation to cancer research – and pointing out to the hapless social media sheep that their ‘gesture’ just might be a little bit offensive – that the tide turned. Of course now a lot of money has been raised and that is a great thing. I still find the concept of a ‘bare faced selfie’ very confusing though. What are we trying to say here – that going without makeup on means you are showing some kind of solidarity with people who have breast cancer? That you are showing the same kind of vulnerability caused be chemotherapy and having great big bits of yourself carved off? Believe me – it doesn’t even come close.
Now that I look a bit more ‘normal’ I am able to shrug off this kind of thing but for all the people in the middle of chemo this last week must have been torture. Picture after picture of their friends bemoaning how shit they look with no makeup on. Really? Try having no eyelashes, eyebrows, or hair (granted ‘only’ 75% of mine fell out). Try gaining 2 stone in steroid water retention so that when you press on your leg it leaves a massive dent until the fluid fills back in. Try having most of your nails turn black, lift from their nail bed and fall off. Try having a massive swollen red face and big red burns on your hands that then crust over and look like you have leprosy. Try not sleeping for 5 days and see how extravagant the bags under your eyes are then. Try having MASSIVE scars on various parts of your anatomy…
… and now you want me to post a selfie with no make up on? Good job I’ve got all that chemo / surgery experience – I should just about be able to cope with people seeing my ‘bare face’. Tell you what – I think I will just carry on with my regular charitable donations and forget the social media crap.
I can completely recognise the good that has come from this campaign – but I don’t think the end justifies the means. There are also some glaring issues… the main one for me being that this seems to have been a women only event. No indication that breast cancer impacts men too. I don’t just mean because of their partners having breast cancer – no mention that men can get it too. If anything needs more ‘awareness’ it is that fact. No suggestion that men should check themselves and / or donate… nope… just the ones wearing make up please.
I could go on about this but I need to go and see my sister now. I guess what I most want to say is that although giving to charity and raising awareness are good things and people clearly have good intentions – that doesn’t mean you can trample all over people’s feelings to achieve them. Next time one of these games / memes pops up – just stop and think how it might affect the very people you are trying to help.
47 Days
So here is the post I never wanted to write. It is 47 days since my amazing, kind, funny, vivacious big sister died. I can’t even begin to tell you how this makes me feel. I had been watching her fade for a long time but the final week was exceptionally difficult for everyone. I do feel very lucky to have had those final days with her and to have been able to say some important things – but when it gets to the point where you are counting how many seconds it is since your loved one last breathed things become a little oppressive.
Let’s be honest – in a way it is a bit of a relief to come to this end point. For Jo as much as anyone – she has gone through so much with such good grace. You know when people talk about those suffering from a disease being inspirational. Well my sisters attitude to life has always been inspirational. She was a fabulous person before she had cancer and never lost that. It wore her down though and now I look back at photo’s I realise how long it had been since I saw her real smile. So much stress and pain. So sad. So sad for my brother-in-law and their two children too. I wish they still had their mummy but I am happy they do not have to watch her suffer any more.
The funeral was a very difficult day but I salute my brother-in-law for the choice of songs. Jo entered to ‘Eye of the Tiger’ which sums her up perfectly. There were beautiful tributes from my brother-in-law and sisters oldest and best friend – and I did a poetry reading. I’m glad I managed to participate in a small way. In lieu of flowers we asked people to donate to CLIC as this would have been Jo’s charity of choice – and amazingly it is up the £8000. So proud of my big sister. If you would like to read the tributes or make a donation the link is below:
https://www.justgiving.com/JoannaPatrick/
I don’t really know what else to say other than I could not be more proud of my brother-in-law and niece and nephew for how they are dealing with everything. I will end with the poem I read for my Jo-Jo. I love you sis, miss you so much…
Feel no guilt in laughter, she’d know how much you care.
Feel no sorrow in a smile that she is not here to share.
You cannot grieve forever; she would not want you to.
She’d hope that you could carry on the way you always do.
So, talk about the good times and the way you showed you cared,
The days you spent together, all the happiness you shared.
Let memories surround you, a word someone may say
Will suddenly re-capture a time, an hour a day,
That brings her back so clearly as though she were still here,
And fills you with the feeling that she is always near.
For if you keep those moments, you will never be apart
And she will live forever locked safely in your heart.
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