Wednesday, 21 January 2009

From despair to where?

On millennium night, I had a party in my folks' house. I invited a bunch of mates, bought in enough booze to render a small country unconscious until the next millennium, made a playlist (man, I make a mean playlist), pulled on a posh frock and backed up my computer files before the bug had a chance to swallow them. We had a stonking night – whiskey-drinking contests, people snogging in cupboards, singing into beer bottles, breakdancing on the kitchen floor... all the tomfoolery and idiocy and sheer drunken daftness you can possibly squeeze in before midnight. For me, the year 2000 was a Big Deal. A potential history-making, sci-fi moment in which the world could change irrevocably and the millennium bug would cause chaos on the streets as people hoarded loo rolls and emptied their accounts at high-street cash points, then watched mayhem unfold on TV while eating stockpiled baked beans. (I love a good drama, me.) I'd been planning my midnight-moment for weeks prior to new year's eve. I'd set aside champagne and glasses for everyone, figured out where we'd all stand when the clock hit 12, bought fireworks and party poppers, sussed out who I wanted to kiss at midnight, synchronised the living-room clocks with Big Ben and cued up REM's It's The End Of The World As We Know It on the stereo. 5, 4, 3, 2, 1... anticlimax.

That's kind of how I'm feeling now. One mastectomy, five months of chemotherapy, six weeks of radiotherapy, and I'm done. My active cancer treatment (if you count out the last bit of surgery and five years of Tamoxifen) is over. Finished. And I swear I just saw a tumbleweed roll past my bedroom window.

The other day, I was sitting on the sofa with Mum, reading my blog comments. 'I can't believe all this has happened,' she said. 'I know, it's ace, right? All these people I've never met being so nice to me – I don't know what to do with it,' I replied. Mum looked puzzled. 'Well yes, that is lovely, but I didn't mean that,' she explained. 'I meant all of this. Breast cancer. I can't believe it's happened to you.' As it goes, neither can I. It's almost eight months since my diagnosis, seven months since my mastectomy, six months since chemo began and six weeks since my first radiotherapy session. Eight whole months of talking and worrying and crying and obsessing and blogging about cancer. (Forget bridezillas and baby-bores – I represent the cancer-consumed.) All that time to compute the situation, and the reality that I've. got. breast. cancer. still hasn't sunk in. Or it hadn't until Sunday night when, on the eve of my final treatment, I had a panic attack. At least I think I did. I'm not certain I've had one before. Not a panic attack, as such. I've certainly been known to panic. And, if you count the boyfriend who got a public slap after cheating on me, I guess you could say I've attacked, too. Just never at the same time.

I feel like a hostage who's just been released. Eight months of being held captive, and I'm not sure whether I should be deliriously happy that it's over or really fucking angry that it happened in the first place. I'm furiously flitting between hyperactive, party-seeking emancipation and disbelieving, panic-stricken remembrance of the whole hideous ordeal. But mostly I'm numb. Weepy and exhausted and numb. Has the reality of having breast cancer really only just hit me? It feels like I've been thrown straight back into that same black hole I found myself lost in at the beginning, in that awful, helpless time between diagnosis and treatment when there's nothing to do but read frightening things on the internet and try to convince yourself that you're not going to die. And there's the panic. So much panic. When a bomb drops in the centre of your universe and you've got no idea what's coming next, permission to freak out is granted. And on Sunday night I had that same gut-wrenching, pulse-racing, heart-sinking, colour-draining, future-fearing feeling I had back in June. (If cancer ever needs a Pepsi-inspired slogan, I'm happy to hand that sentence over.)

Nothing is worse than the unknown. The wait for my biopsy results was worse than hearing the diagnosis. The fear of what my surgeon would find was worse than discovering how far the cancer had spread. The anxiety of my hair falling out was worse than seeing myself bald. The night-before-chemo terror was worse than being wired up to the drugs. And now I can't help but wonder whether the so-called freedom of being released from cancer treatment might be worse than the treatment itself? Whether not knowing if the cancer will return is worse than finding it? (A wonderful, Bullshit-beating woman emailed this week to say how she 'missed and loathed the treatment in equal measure'. How right she is.)

I want this to be an uplifting story. I want to pick myself up, dust myself down and get on with whatever it is I've got to get on with now. So does everyone around me – whatever they say, I'm sure I can sense their frustration that I'm not quite well enough (physically or mentally, I guess) to bounce back into life as we all knew it. And fair enough – while I've talked and worried and cried and obsessed and blogged about The Bullshit for almost eight months, they're the ones who've had to hear it all. They must be as sick of it as I am. I bet they feel like they're on the receiving end of a proud parent's single topic of conversation. ('Yes, your baby is cute. Yes, definitely the cleverest baby I've seen. Yes, quite amazing how she can gurgle so loudly.') But even more than I want this to be an uplifting story, I want it to be an honest story. And the honest truth is, at the end of treatment there's as much to mourn as there is to celebrate.

I'm not getting over the flu, here. I'm getting over a disease that has hugely affected my life – my appearance, my relationships, my future and my outlook – and left me in a huge pool of doubt about what happens next. There's a terrific Macmillan-run online cancer support community that I discovered recently, called What Now? To the untrained, unaffected-by-cancer ear, that's just a simple, snappy, easy-to-remember title, probably thought up by focus-group volunteers in a charity office's back room, on the promise of travel expenses and good biscuits. But I beg to differ. That title has to have been thought up by someone cannier. Someone who's experienced all of the future-fearing feelings I've talked about here. To anyone who's walked in my size 7s (spot the Louboutins hint), calling a cancer support community What Now? is brilliant, heart-of-the-truth genius. Forget lip-smacking, thirst-quenching, ace-tasting, motivating, good-buzzing, cool-talking, high-walking, fast-living, ever-giving, cool-fizzing Pepsi – What Now? is the sharpest bit of marketing I reckon I've ever seen.

31 comments:

d.edlen said...

I think you're in grief for the loss of the Bullshit. Sounds a bit wacked, but it should be natural.

And you are in limbo. Sucks for sure. So many doors open, which to take for fear of missing the others.

So let yourself grieve. Perhaps in that process, taking the place of the process of treatment, you'll find direction. Listen.

Peace.

GrĂ¡inne said...

I wish I could give some knowledgeable, wise answer...but obviously I haven't a clue. I hope you can move forward and that cancer becomes a thing you once had, rather than something that dominates your days. I worked as an SHO for a breast surgeon for 6 months once upon a time and it often occurred to me that the advances in rapid diagnosis and treatment had made it harder for women to come to terms with it all in a way. It was often less than 2 weeks from finding a lump to mastectomy and then onto chemo and radiotherapy without having time to catch a breath or actually think about what it all meant. I think you're probably coping better than many. It's not fair and it's downright terrifying. Wish you all the very best as you hopefully begin to enjoy your hospital-free life. Hope you continue to blog and tweet...

Alex Woolf said...

Inspiring and moving. Thank you for posting very much. I'm following you on twitter, and my username is @alexwoolf. You are truly inspirational.

mac_kix_windoze said...

What can I say except, well, well done? I'm still in the wilderness, as you know, one week into my own radiotherapy. I can see as far as the end of that, in February and the CT scan that follows in March. After that, as you rightly point out - what then?

I do hope it comes clear for you. Meantime, try and revel in the feeling that you don't have to keep going back "there" any more.

Grumpy Old Git
http://mackixwindoze.wordpress.com/start-here

Anonymous said...

You've said a lot of things that are more wise and uplifting than anything I could possibly offer, so all I can say is that if there are answers to be found you probably have them within yourself.

Good luck with your onward journey.

Garp said...

What now?

Life now, surely? You've paid the penance for a crime you didn't commit.

You've put life on the hold ever since diagnosis. You've been chained to where you were, what you were doing because cancer gave you no choice. It held you a prisoner in your own body.

Now the treatment is over you can go back to living, no longer a soul on a hiatus.

When you were diagnosed with cancer did you find you had "Oh, but I'll never get to..." moments? Surely now is the time to seize those thoughts and turn them into reality.

So many of us plod our way through life, forgetting our dreams, buried in work, earning the money that when we were kids we imagined would allow us to achieve those dreams, but never getting around to it. Then we get towards the end of our life and realise "Damn.. why did I never do this whilst I was still young and fit."

Don't slip back into that life. Seize every opportunity, every chance at life you can get.

What now?

Whatever you like.
Whatever you can.

Me, Myself & I said...

what now....?? Indeed.

What a world of possibilities await you!

Start living, loving and laughing and never forget to smile

VENI VIDI VICI

Leslie said...

This happens - its all part of the process. It's NOT grieving for the loss of the Bullshit. That's such bullshit.

You have been through HELL at high speed - actually almost Warp Speed. You have not had time to take it all in, blogging or no because you have been consumed with the day to day dealing with the Bullshit.

But now, how do you go back to being you? Can you go back? what IS normal any more? How do you figure out what "normal" is after all this?

Those are deceptively tricky questions. The best Dr. I had told me after he outlined the treatment plan that what I really needed to understand was that I would never be the same. I might think I understood it going in but I wouldn't really until the treatment was over. He was the kindest and best Dr and had and boy, was he right.

Give yourself time. Connect with What Next or a group called "the Wellness Community" for cancer patients and survivors. Of try to find the book "Dancing in Limbo" (can't recall the authors. This is all just part of the ugly trip - it's the "WTF happened?????" section.

Give yourself time.

taluta said...

Hey there, glad to hear those awful treatments are over.
My mom had a mastectomy about 2years ago, going into her third year of chemo pills, still in the clear. I had a nasty scare a couple of years back but turned out ok.
Once you have been down this path, either in person or with someone, you are never the same again, you need to rediscover yourself because it will have changed you forever.
You have experienced a loss, a part of yourself was taken from you in more ways than one. It is a bit loke losing someone you love and feeling that impossible emptiness.
Life is never quite the same again, but it can be different and possibly even better in some ways.

JoK said...

Hi there,

Remember where you started? The list of things to do before you turned 30? How about you revisit the list and cherry pick a little. As you start to recover from this horrific journey promise yourself one of the "nicest" items as you start to work through your life over the last eight months, and your life over the next 70+ years.

I cannot begin to understand what you have been through, or what those around you have been through but, I am guessing you all need some tender loving care right now and that you all need time to see that whatever the future holds for all of you, right now the sun is shining on you and yours so bask in it.

Sending heaps of positive vibes in your direction, and wishing you the time to accept what cannot be changed and to work towards changing what cannot be accepted.

Anonymous said...

I think everyone is right. What you are feeling is entirely natural - coming down from an all consuming event. You've not even been battling this a year and your life has been taken over by it.
I don't think there's anything wrong with sitting back and taking stock, but you've got your life back so you can go out and do what you want, when you want!

Thomas said...

Hi,

I stumbled upon your Bullshit blog about a week ago, and - surprising myself - I found myself, and I mean, I am a 24 year old Norwegian male, not exactly in the risk zone for getting breast cancer, I found myself reading, reading and reading.

I think you write so damn well. And it feels so true, what you write. So honest, tough - and so very sympathetic.

This might sound a bit silly, coming from someone you absolutely don't know who is not at all in your situation, but I sincerely wish you the best. I hope that Bullshit never comes back. And that your hair grows back out.

Thomas

Kieron said...

Write a book.

Not about The Bulshit - you've done that on-line. You have an obvious talent for writing, for prose and rhythm and I, for one, would love to read more of your work.

Have fun whatever you decide to do.

K.

Zee_K said...

Well i would love to offer some pearls of wisdon for you, but i dont really have any. Maybe you should write a book about your experience. Your blogs are so honest and so brilliant and so sad and so funny at the same time, the prefect combination! btw what do you make of Jade Goody?

bjtp said...

Congratulations on not having to endure anymore horrible sickness, pain and appearance worry. I guess all you can do is be glad that the actual physical suffering is behind you, you have climbed that mountain and try to enjoy every day without letting the fear of The Bullshit eat into your life any more than it has to. I've spent the last week or so reading back through your whole blog, and it blows my mind. The way you have endured and planned around this horrible thing that landed in your life is so inspiring. I'm sure you've heard those words bandied around a hundred times, so I guess you'll just have to accept it as being true. :)

gemmak said...

Firstly, a big well done on getting to this point :o)

I think what you are feeling in 'normal', I haven't had cancer myself thus far thank fully but I am considered high risk (familial stuff) and as a result have dealt with it at close second hand a number of times.

In life, all of life, be it good or bad, whatever we experience becomes 'our norm' and strangely, even in the tough times, we as human creatures don't much like change. We become accustomed to whatever our 'norm' is and leaving that behind is peversely quite difficult! Add to that we assume 'good stuff' should make us happy instantly, but the reality is often different, it takes time for our minds to become accustomed to a new 'normal', for that to become our place of comfort again! More still, we feel baffled that we don't feel instantly happier and probably an odd sense of guilt that we don't....as a result we attempt to force ourselves into feeling what we think we 'should' and forcing feelings only results in more anxiety.

You have a whole new set of life circumstances to get used to again, it will taker a little while but hang in there, allow yourself to feel whatever it is you feel and in time you will get to your new 'normal' and comfortable place! :o)

Tessa said...

Yeah, I hear ya, Sister.

How about something a bit Zennish? Often helps, I find....

Sit quietly, doing nothing, spring comes, and the grass grows by itself.

Tessa said...

Oh, just one more thought...from Jane Rubietta....that you might find comforting?

Someone may have stolen your dream when it was young and fresh and you were innocent. Anger is natural. Grief is appropriate. Healing is mandatory. Restoration is possible.

Davescunningplan said...

What now? is a pretty damn good question for us all every so often I reckon..

Karen said...

Hi--As a fellow bullshit survivor, I give a "hear, hear" to Leslie's comments. I don't buy the notion that you grieve for something so unbelievably sucky.

For me, the very real "What Now?" is a recognition of the fact that you can't go backwards. The cancer happened and it's a wretched thing. There's definitely another side, but given how much your every move has been dictated by treatment in the past eight months, it's kind of hard to realize you're sort of on your own now (it's all relative, of course).

It took me a while to find my bearings again (I finished treatment in March '08). But I filled the time with friends and travel and by doing whatever the hell I felt like doing. If I wanted to go see a movie or to a museum or to the arboretum, I did. And if I felt like staying in my jammies all morning and watching DVDs in bed, I did.

Best of luck to you.

Anonymous said...

It is grieving. Not perhaps from the bullshit, but from the what could have been, should have been. And the journey still isnt over, you have your annual and then five years checks before anyone will even mutter the word 'cure'. I know cause I was there, I had breast cancer aged 36. No one can tell you how to travel, and dont let them even try. I can only tell you a couple of things that helped me. First, when things were over and I had the strength I got together with friends and took part in a Dragon boat race for one of the local charities, we dressed as pirates, came in last, even had a picnic ha;f way accross the second lap, what a blast!! We booked a holiday up north, 2 adults and 4 teens, we needed that time to come back together as a family. Finally councelling, via a local organisation. Yes i know, you dont need it, your better than that!!! Ah, then again, maybe you like me will discover that your no better than anyone else, your not superhuman, and you deserve the chance to heal in every way. Whatever it takes, go fo it. Wishing you well in every way.
Ellie
Ps, wee piece of advice, avoid hair removal cream on your under arm area for at LEAST a year..mega ouch like you wouldnt believe. cheerie

TH said...

Your frustration sensors are a bit out there missy, everyone around you is relieved that this bit is over, but completely-bloody-behind-you for the next bit. Just keep on keeping on, everything is going to be great, it’s just going to take a while. Love you.

Thomas sounds nice. I’m giving him best comment of the day.

The Style PA said...

Whatever you do from now on, it has to involve writing. You capture an audience with your words and bullshit or not, that won't change.

All the people that read your blog are not just here because of the bullshit, thy are here because your writing is simply addictive.

Oh, and hopefully fluttering your eyelashes will be on the card...

wakeupandsmellthecoffee said...

I am new to your blog, and I'm so glad I found it. You're an absolutely brilliant writer. Really! I'll be back.

Nose in a book said...

Hi. I'm one of the many who discovered your blog thanks to Stephen Fry and I'm so glad I followed that link. I've read your story from the first entry and it's brilliantly well written.

As to the current "where next?" feeling, I can't say I know exactly know how you're feeling but I do know about having to reevaluate life thanks to illness and it's scary and huge and, most importantly, ongoing. I wish you well with whatever you do and I hope you keep the blog going so I can carry on reading!

Anonymous said...

Give yourself time and when your ready, do all the things you looked into the future and wondered if you'd ever get the opporunity to. Live your dreams. Love the people around you and let them love you back. You still have such a journey to take and while it may be selfish, I really hope you let us share them with you! Ooh, if your not too busy getting on with life, you have a SS30th to organise!

Em x

Anonymous said...

As a fellow twenty-something woman with breast cancer, I unfortunately just can't warm to your blog! I have to admit though I am allergic to these breast cancer blogs though. Best of luck with your treatment and wishing you good health.

Chapati said...

Wow, I literally only just discovered this blog from wakeupandsmellthecoffee and I'm already hooked!

Well done for everything you've fought through over the last 8 months.

And don't be afraid of expressing yourself and being you...bottling it up would be far worse.

I'm gonna go reading some of the archives now...

Just saying 'hello!'

Surviving Whole said...

Your stories are inspiring. I just found your blog via your Twitter and read several entries with much interest. I'm glad you found an online UK community to join. I work with another online community (Surviving Whole) doing a similar thing so I know how important that is. You've also seemed to carve out your own online community through the blog and Twitter. Good on you! You'll get through this :)

Rebel with Cause said...

I wish you a long life where you will find a way to harness the same will, focus and ability to share that you have shown while fighting your bullshit and writing about it all. My suggestions come from observing at close quarters 3 members of the family who had cancer where I was closely involved in choices they made and all the follow ups.

Most important, you have taken ownership of your life and did what made sense for you, including this blog. The whole thing sucks. But, as someone who at about your age lost the husband and 2y daughter while being herself seriously injured (in a car crash), I adamantly say, your psychological and physical recovery is all about your attitude to life. You have followed the treatment and now have all clear. That phase is finished.

My niece, a feisty, independent and clever young woman was just over a year ago diagnosed with melanoma - the kind that kills. She was 29 then. It had invaded her lymph nodes as well. She had radical lympectomy and went back to work in a matter of weeks, not telling anyone except her boss what was the matter. She fitted in her wound dressing, massages etc in the breaks. She had to change the clothing style - nothing that constricts any more allowed plus full body cover required. She had to give up on a dream of working in Africa. Yet, she went on and changed jobs less than 3 months after the op - taking a responsible position in a leading world charitable foundation in a role that required learning new skills as well as a new language. Guess like with the cancer, it held no fear for her - she is now there over a year and highly successful with an expanded portfolio of responsibilities. In the midst of all that, she also got married to a young man who comes from another continent and a totally different culture -they started their life together in a country where they have no family and just work colleagues, only a rented flat and where he speaks only a bit of the local language.

I am saying all this to show you that one can face the fear, be angry, see what needs doing, do it and get on with it. You now know, like my niece, that you are mortal in much more graphic terms than even your mother. Do not give that bullshit the power over you! You are a great person and have so many people who care what happens to you. Show them and the rest of the world who you can be now. I love that you are rediscovering your femininity. Go, find a new look.

Oh, and have you thought about reconstruction? My sister in law had breast cancer about 10 years ago. At the time she opted for radiotherapy and radical chemotherapy but only lympectomy. Besides Tamoxifen (5y+) she had regular six-monthly check ups. Well, a year ago they found a lump again. So, she opted for radical mastectomy this time plus chemo (in US they do not do radiotherapy when all of the cancer was removed. After 6 months she had full reconstruction -going from 38DD to 38B. She looks great (translation - younger) and loves the new image. She said, she always wanted breast reduction and was going to do it by the time she reached 55!

The very best of luck. I will be popping to see what you have to say soon again. May be you will have branched out by then...

Lilly

mrswym said...

What's next...who knows? What you do know is that you have the most amazing family and friends to do it with you.

Oh and don't forget This Morning...you may of even be wearing a pair of red soled shoes ;)

Loads of love xxx