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Cancer and other stuff

Archive for the month “March, 2011”

Just…

Well then, it feels like it’s been a while since I was last on here but I don’t suppose it is really. Writing this blog has been one of the best things I’ve ever done, it really is a form of therapy – I’ve never been particularly eloquent verbally, as lots of you will know, but it just feels so much easier to write. Brace yourself though, lots has happened so you might want to make a cup of tea before you start on this War And Peace-style briefing.

So, first an update on the latest medical shizzle …I finished my first week on the new drugs last Friday, having spent an hour every day last week hooked up to a drip. The staff have been truly, truly brilliant – there’s lots of hanging around for blood tests and things (as they’re looking for side effects on the blood and how quickly the drugs leave your system as much as they are for whether the cancer gets its arse kicked so on the first day, for example, I had to have 5 blood samples taken at different times after I’d had the first infusion) but I really have got proper one-on-one attention from the nurses and I’m so very grateful that they’ve made it really easy for me so far. I get to have a little lie down for an hour or so every day, eating crisps, wandering round in my socks making tea and reading my book in a blissfully peaceful hospital ward so it’s not all bad. I now have 2 weeks off, and start the whole thing again on 4th April. They’ll do a CT scan on my lungs sometime around the end of April to see whether the drugs have made any difference. Please God let them have made a difference.  

Some of the eagle-eyed amongst you may have spotted that I had an article published in the Sunday Times Style magazine last weekend, having been approached by them after they saw this blog bizarrely. I was happy to write it, my friends really have been ‘da bomb’ and I wanted an outlet to shout to the world about what a gorgeous bunch I have and how lucky I am to have them in my life. As Sunday morning drew nearer, I did find myself absolutely TERRIFIED though. I’ve never been that open and honest with such a potentially large audience before – of course I write this but am fairly sure it’s mainly friends and perhaps the occasional friend of friend who ever reads this. Anyway it was all good and I had some very touching emails from friends, colleagues and complete strangers which kinda reaffirms your faith in humanity. People want to help and they want to engage with you when you put your heart out there for everyone to see, in all its chipped and broken (but still beating hard!) honesty.

Mid-way through the week, just as I was like ‘yeah man, this is all OK, I’m good, drugs are good’, I received an email to say that a woman I met at a younger women’s forum run by Breast Cancer Care in 2009 had died. When we met, we had both just finished our treatment the first time round (still remember the fluffy hair we were both starting to sprout), we had the same type of cancer and it seemed our journey had been remarkably similar. Our paths crossed again when we were both diagnosed with secondaries around September last year. We exchanged a few emails along the lines of “we’re both gonna beat this, hell yeah sister!” and I didn’t hear from her again for a while except through a bit of Facebook spying. I did think of her often and wondered how she was doing; I had assumed that, as we had had such a similar experience so far, she would naturally be as well as I am. To find out she had died just 6 months later was a massive, massive shock. You’d think I’d be used to shocks after the ups and downs of the last 2 years (cancer birthday was yesterday by the way), but not anything on this scale. I spent the next 24 hours sobbing, shaking and feeling completely sick before, with the help of aforementioned amazing friends, washing my face, scrambling up off my knees and trying to think rationally: different people, different treatments, and I ended the week feeling grateful and lucky. In those 6 months, she got so poorly she died, I on the other hand feel and look exactly as I did in September when this nightmare started and I have to be happy about that. Whatever may happen in the future, right now, today, I am one of the fortunate ones.

But it’s got me thinking. This situation is complex. Having a life-threatening illness is not easy at all, particularly for those around you and everybody has some piece of ‘advice’ to give, some pearl of wisdom that will make it all go away, right? The current favourite seems to be ”you have to think positive”, sometimes even with a ‘just’ between ‘you’ and ‘have’. Before I go into a bit of a mini-rant about this, I do understand and appreciate that this comes from a loving place and I am grateful for that but it’s become apparent that the very definition of positivity is different for different people. I have to admit to feeling very hurt when people say I’m not “thinking positively” because I’m not wandering round in a bubble of denial and screaming from the rooftops that of course I’m not going to get ill and die one day, what tosh! Those pesky doctors, bah they don’t know what they’re talking about. Well I’m sorry, but I flatly refuse to live my life like that. Those who know me well enough know that I spent a long time living in denial and it’s a very dark place to be – the longer you stay there, the harder it is to escape from until you’re not really sure what’s the truth and what you’ve conveniently made up for yourself. It took me a long time to get brave and honest with myself and I haven’t gone through that process for nothing. For every person with cancer or other life-threatening illness, there’s a different response and for me “being positive” isn’t running away from the facts as you are presented with them and pretending lalalalanothappeningnothappening, it’s how you choose to behave and act and the decisions you make within the context of what’s going on for you. It’s going “OK, this is the deal, here is what I am being told, here is what I know today – what am I going to do about this?” OF COURSE I still have hope, look at me, I’m fitter and healthier than I have been in ages, mentally and physically, and that has to count for something. I’m lucky enough to be one of the first women on what could potentially be the next generation of cancer treatment, how good is THAT? But I am also realistic and therein lies the difference. I want to face whatever it is I have to face with dignity, humour, peace and gratitude for the time I do have. Which is today; not to get all mushy but today is all any of us have and if I can wake up in the morning, feel well, go to work, be useful, partake in life fully with every fibre of my being, laugh, love and be happy that day, then as far as I am concerned, THAT is thinking positively. Not hanging on my hopes on some miracle drug that may or may not work and missing the beauty of the time I have now. I can’t spend all my time focusing on the future when I don’t have to just yet. I’m just concerned with the next 24 hours, things change so rapidly for me that that’s pretty much all I can do. I know this is hard for some people to hear, particularly family (sorry mum) but as much as I am ‘fighting’, what if I can’t fight hard enough, does that mean it was my fault? Sharon had a young family, a little girl whom it was clear she adored – absolutely everything to fight for and she still couldn’t do it. There’s that old cliche that actions speak louder than words and it’s so true. So please, if you want to help or make things better, tell me a joke, take me to the pub, tell me about your latest boyfriend/girlfriend, make plans with me. Trotting out cliches that don’t really help anyone is getting a little difficult to deal with now, much as I know they’re meant in a good way.

Phew, I did say this was a long one but I’m glad I shared 🙂

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From The Death Of Iris, Jo Shapcott

“… the flower is the colour her soul has traced
in the eyes of those left behind, the colour
in the sixth band of the rainbow
she lets us glimpse every now and then.”

I just think this is lovely, that’s all.

Don’t you just love it, when you open your window in spring…

The Bees

Dear friends… you stuck a pin in the map I was in and you are the stars I navigate home by

Elbow

Auntie Fwan

This weekend I have been in beautiful peaceful countryside visiting my dear friend Laura and her boys, (Big G – husband and Little B – Bertie, aged 2). And for the last 2 days my name has been Auntie Fwan. Which I ADORE.

I’ve talked about Laura before, and I know some of you reading this will know her too. And those who do will know everything she and Gordon have been through in the past 12 months. For those who aren’t aware, this beautiful little family lost their most recent addition, Stanley, last June after just 11 short days with no warning. I will never forget attending his funeral and seeing my darling friend so completely broken. It was a very bleak time for everyone.

Laura and Gordon are happily expecting another child in August and, so far (we only do ‘so far’ hey Laura?), it looks good. Baby is doing well. Mummy is also doing well, in fact amazingly so. The battle she faces on a daily basis is immense. Looking after a gorgeous little two year old tinker, keeping a house and home together, with a steadily growing bump that is playing havoc with her sleep and pelvis would be tough enough I imagine. Add to this feelings of anxiety and trepidation brought on by a complete tragedy that was less than a year ago and it’s a whole different story. This time last year they were looking forward to Stanley’s arrival in May with absolutely no sense of what was ahead and it’s so fresh that of course everyone is bound to be a bit nervous.

This weekend, Laura bravely shared with me the few photos they have of Stanley at home in those first few days, and then at the hospital when sadly his condition became apparent. He was very poorly due to a very rare heart defect that sadly put his tiny, perfect little body under huge strain. Laura and Gordon then had to make the very courageous and agonising decision to let him go.

We talked a lot about it this weekend and I think I finally get a smidgen of the shattering grief and loss their little unit was faced with, and still is. Laura and I often agree that, while our tragedies are, of course, very different, a trauma is a trauma is a trauma. Thankfully most people never go through what we have and neither of us would ever want them to. It’s meant we will always have a bond between us that nothing and no-one will ever break. I feel privileged for her friendship and I hope, actually I know, that she understands she can talk to me about anything, all the unpleasant stuff that ‘normal’ people have no idea about. Things like the type of crippling shock that lingers for months and years, the disbelief, the bewilderment and the very real threat to who you thought you were.

I have to admit that, having seen and cried over the photos of Stanley wired up to a gazillion machines, and what I can only imagine that must have felt like, I honestly think I wouldn’t have been able to go through another pregnancy ever again. But I’m not as brave as Laura, nor do I have the utter devotion to a growing little family that she does. They want a family – a brother or sister for B, the completion of their circle. I have never met a girl more destined to be a mother than Laura, everything she does is devoted to her boys. And if it means she has to dig deep and face the fears that could so easily have swallowed her up, then she’s done it. She does it every day. The pictures she has of her and Stanley together show motherly care, love and complete devotion to the little boy in her arms, it’s written all over her face. Barely a trace of anything other than his welfare, way above her own. I can see it clear as day, I’d never get anywhere near it, even if I could have children I don’t think.

I am inspired by little things on a daily basis at the moment but Laura will always, always be my heroine. I see in her something mind-boggingly amazing. All the time. And to top it off, she’s a great pole dancer too, as evidenced by a DVD from circa 2004. Sorry Laura, I couldn’t resist that 😉 xxx

Getting ready

MY GOD what a mad couple of weeks hey? I feel like I’m only just catching my breath. Has been really nice having even a few days off hospital, it’s quite easy to feel normal when you’re out of that place and not being passed from doctor to doctor. Except I had a little pang of grief earlier, only for a split second. The briefest stab. For the life I will never lead, the things I will never have. I’m getting used to the idea now which is possibly the most tragic thing. The wishes I use to have for my life have gone and they will never come back. Next week I will have a portacath fitted then we’re all set to go with these new drugs which are going to involve constant treatment and endless monitoring. No turning back then. This is my new life.

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