Going forward in ups and downs

I was tempted to stop there.  To stop blogging with my last post and its final, joyous sentence: I am rediscovering the glorious, sweet thing that is life. 

Life.  What a great word to end a blog about cancer.  And I know how immensely fortunate I am to be here to enjoy simply being alive.  But in the daily routines and requirements of post-cancer life, you can't always be savouring every moment.  In fact, I read an article recently that talked about how difficult it can be for cancer survivors to deal with the pressures of life post-treatment - we are bombarded with stories about people for whom 'Cancer Changed My Life!!' and how they have gone on to live more fully than ever before.

In reality, for most of us, post-cancer life looks remarkably like pre-cancer life.  The washing, ironing and cleaning still needs to be done and winter days are still wet, cold and dark.  We just have to do it with short hair and scars.

Some of us may also be coping with survivors' guilt.  Why did we survive when so many admirable people do not?  Or else we get caught in a 'wait and see' scenario, holding off fully engaging until we can be sure that this gift of life is not simply a short respite.

But perhaps the most common feeling is that life feels just a bit...flat.  As a good friend put it recently, her post-cancer life feels 'lame'.  Dull.  Oh my, I feel guilty just typing that.  How can we complain about a dull life when we should grateful to be here at all?

This time last year I was facing a chemo-Christmas and, trust me, I am truly grateful that this year I am healthy.  I never want to go back there again.  And yet... When I was sick it seemed that nothing I could do was wrong, everyone thought I was so brave, so wonderful.  I found that I almost had a celebrity status when I was on chemo. Now I'm just 'me' again...     I am no longer a 'celebrity' and that is a good thing - but I miss being the centre of all that fuss.  

My friend writes: Last year I got so many emails and letters and visits from overseas. Now the stream of attention has dried up. Not that I always want to be in the floodlights, but it was great to have so many visiting friends and conversations and deep talks about life. Compared to last year I am living in social isolation - despite the fact that I spent most of last winter on or near the couch.

Combine that with scrappy new hair, no job and a thickening waistline (thanks Tamoxifen) and perhaps it's not surprising that our self-image isn't exactly sparkling at the moment.

So where do we go from here?  First of all, we DO need to remember to give thanks.  It's true that's its corny and we can't be expected to live our lives feeling happy every minute just to be alive - but we ARE alive and that is a gift.  Then we need to remember how strong we are.  Not because we 'beat' cancer (that's just luck) but because we fought it.  We lived through FEC and wigs and vomiting and scabby nails (or equivalents) and kept going.  We are still amazing - even if we can't expect to have cheerleaders around us telling us so any more.

And then we need to go forward.  Life post-cancer is still going to have grey days just as it did pre-cancer and that's ok.  We're allowed to have downs as well as ups just like everyone else.  But now we have experience of our deepest selves in the hardest of times and have learnt how to draw strength when we really need it.  The truth is that 'beating' cancer doesn't change anyone's life.  It just helps us realise how amazing we all can be. 

The terrible, wonderful world of cancer

It's sixteen months since I heard the words, 'They found cancer cells.'

Sixteen months of treatment that turned my life upside down.  Of misery and exhaustion and fear...and intense love from my family and wonderful friends and a rediscovery of the sweetness of life.

For a long time after my first ever post,  when my terrified fingers typed cancercancercancer, this terrible C word became the focal point of my life.  You can see it on my blog where I posted every few days, first of all about my own first faltering steps through treatment, then later about the wider world of new cancer treatments and the psychology of dealing with a cancer diagnosis.

Sixteen months on and the cancer still looms huge in my life.  This is no common cold that will pass!  I remember every time I run my hands through my hair, when I reach for my bra, when I exercise, when I look on Facebook and see posts from others travelling the same path.  But it is no long the hub on which my life turns.  I can see that it is weeks since I last posted and that's because I have been busy living: settling my family into our new home, writing stories instead of cancer blogs, creating a new website about me as an author not a cancer blogger, meeting new people who have no idea that cancer ever touched my life and think I just like to wear my hair this weird way...

It's not as if there aren't plenty of things to blog about.  It seems that the terrible, wonderful world of cancer is almost always in the news these days and many of these stories are inspiring and full of hope.  A new blood test that can detect cancer and pinpoint the affected organ from just a single drop!  New technology that can use fat cells to can carry a 'heat activated grenade' to the site of a tumour and explode the cancer cells without killing healthy cells!  Glamorous ladies posing topless in the Sun post-mastectomy! 

There are stories to chill me too.  A good friend has discovered that the breast cancer is back for a third time, this time in her bones.  She is facing life with a chronic disease.  But she is still facing life. 

I am still afraid, fear still lurks in the 4am shadows when I mentally check my body and wonder, wonder, wonder...is there something malevolent brewing somewhere inside me?  I know it could still take my life.  But I am also realising with a sense of wonder that even if I do have to face the devil called Cancer a second time, it does not have to mean the end...maybe not even the suffering that a cancer diagnosis means in terms of treatment in today's world.  The scientists are bounding forward  like knights clad in white coats against the dragon called Cancer!

Meanwhile my hair grows.  My world, which shrank so small during the cancer months, expands again and flows over the old, pre-cancer boundaries.  Dear friends, I neglect my blog.  I am rediscovering the glorious, sweet thing that is life. 

Let's not be Grumpy about Pinktober

If you've been following my blog you'll see that I've changed my profile pic to the poster produced by the fabulous ladies at Flat Friends: an online group of UK based ladies who have decided against reconstruction after breast cancer took one or both breasts.  I'm proud to be on there with such a lovely looking lot of ladies. 

Hopefully campaigns such as these will help women (and men...let's not forget that they get breast cancer too) to remember to check themselves in Pinktober and beyond and thus save some lives and some breasts too.  There is, however, quite a bit of grumpiness about Pinktober on the cancer blogosphere.  Survivors worry that all that pink fluffiness trivialises breast cancer or, even worse, makes it seem like a 'good' cancer.   There's a lovely quote I found somewhere (sorry, can't remember the source) that 'breast cancer is about vomit and finger nails dropping off.  It isn't pink and pretty.' 

That's certainly true.  And some campaigns, like the M&S 'show your strap' campaign, are rather insensitive given that many of us don't have breasts to put in a pretty bra any more.  They have missed a trick, I think, by failing to provide more post-surgery and mastectomy lingerie options in the range that they are advertising alongside the campaign.  On the other hand, what a good job it's done on getting the message out there about breast cancer!

I'm looking for a job at the moment and one position I considered was working with a charity that raises awareness of CMV.   Do you know what CMV is?  No, nor did I.  You will probably be as shocked as I was to learn that it is one of the main causes of children being born with permanent disability, more common than Down's syndrome, Spina Bifida or Cystic Fibrosis.  Simple improvements in hygiene like regular hand washing can prevent CMV and yet most pregnant women never have heard of it.  Think how happy that charity would be to land a campaign like the M&S 'show your strap' campaign.  So I think we survivors of breast cancer should not be too quick to criticise well meaning awareness campaigns even if they are sometimes rather pink and fluffy.  Let's just get the message out.

And while we're about it, let's be a little sensitive about the message we get out there.  Let's face it: we've been through a lot.  Vomit, finger nails falling off, scars and all the rest.  We might not want to sugar coat it, to let the world think it's 'just' breast cancer, but on the other hand spare a thought for the women flicking through magazines as they wait to see the doctor about the suspect results of their first mammogram.  Let's not terrify them.  Yes, breast cancer takes lives, it takes breasts and it takes months of horrible treatments.  But most of us do get through it, often stronger than we were before, and focusing on the negatives is a worse than making a first-time pregnant woman listen to endless horrific birth stories. 

That's why I love this Flat Friends poster.  Look at us!  We've all lost one or both of our breasts and we're not hiding that tough reality. And yet, aren't we beautiful and smiley?

Pinktober can be a difficult time for those of us affected by breast cancer.  By all means, let's make sure that the glossy world of celebrities doesn't water down the message.  But let's not go to the other extreme either.

Most of all, let's remember that all that really matters is getting the life saving message out there - whether you agree with Pinktober and the silly campaigns that run at this time of year or not, at least it's all publicity.  I wonder how many more women have finally booked in that mammo as a result of all the buzz on social media?  So pass it on: nag your friends to check their breasts!  And while you're at it, tell your pregnant friends to wash their hands regularly.  

New Start, Same Old Cancer

Moving house is never easy.  Endless boxes to unpack and all those practicalities to sort out: schools, furniture, utilities and the all important internet access...  And cancer adds a whole new dimension.

Luckily I'd finished my active treatment by the time we moved back from Brussels to our old London home this summer.  I'd even had time to squeeze in my three month check up with my Belgian oncologist and, despite a scary mammogram experience, he gave me the all clear in July.

So when we arrived home after seven years overseas, sorting out my cancer treatment was just another thing to do on a long list that started with settling the kids in their new life.  Once school started, I had time for the necessary GP visits to get re-registered and find out how to get top ups of Tamoxifen, and then I was referred to St George's in Tooting which has a reputation as one of the best cancer hospitals in the country.  My appointment came through quickly and I left the half-unpacked boxes in our chaotic house to find my way to the charmingly named Rose Centre, negotiating unfamiliar public transport and following Google Maps from the station. 

I found my way with only a flash of nostalgia for my old journey to St Luc's which I could have done in my sleep by the time I'd finished treatment.  I even felt a little smug as I signed in.  The waiting room was full of ladies with full heads of hair and anxious expressions - there for a first mammo.  Not me.  I was glad that I wasn't at the beginning of my journey with mammograms, dodgy results and months of chemo ahead of me.  All I needed was to meet my new oncologist to find out how he wanted to keep an eye on me.  Easy.

But things never run smoothly where cancer is concerned, do they?

I wasn't worried when my he decided that I'd better have another mammo on my remaining breast, just to be safe.  But I wasn't at all prepared for the news that the radiologist was concerned by calcification and that she recommended a biopsy.  Biopsy?  You've got to be kidding!

So there I was, in a crowded waiting room, desperately attempting to translate the medical French used in my last Belgian mammo report to see if that offered reassurance.  Sure enough, it did refer to calcifications which my Belgian radiologist had dismissed once they'd done an ultrasound and that was enough to persuade my new oncologist to wait until the images of my earlier mammo arrive from Brussels before deciding whether I need a biopsy.

Meanwhile, I'm back in that waiting game.   It's not exactly the new start I was anticipating.

New starts can be exciting, especially if they let you leave your old, sick self behind and re-invent yourself.  But they can also be unsettling if you discover that the old, sick self has followed you to your new home and your old networks have not.  The wonderful circle of ladies who supported me through the last round are now on the other side of the channel.  I'm meeting new people who seem very nice but we haven't exactly progressed beyond the 'My name's Chloe and I've got two children' stage of things.  It seems a bit soon to dump a 'I've just finished chemo and radiotherapy for cancer and now I'm scared that I've got another lump, can I cry on your shoulder if I need to and will you bring me and my family lasagna when I can't get out bed??'

It is, in any case, weird meeting new people with my new, short, curly black hair.  Don't get me wrong: any hair is good after all those bald months.  But short, black and curly?  I've always been longish, blond and straight... I guess it looks okay (once I've done what I can to flatten the curls so it doesn't look like a granny perm) but it doesn't really feel like Me.  But this is the new Me that my new friends will know from now on.  After everything that's happened, I'm not sure how well even I know this new Me yet.  I guess she's changed a bit from the pre-Cancer Me but she hasn't really had time to work out where she lives yet, so figuring out her head is still on the To Do List. 

So here she is, the new Me, unpacking, sorting and supporting the family through the early days of resettling, working through To Do Lists, sticking down her wilder curls and plastering on a smile, meeting new people at coffee mornings and chit-chatting without ever admitting to the fear that lurks beneath the surface. 

And waiting.

Moving house is never easy... And can we ever really leave our shadows behind?

Vitamin D and Breast Cancer: Just another Fad?

I must admit that I tend to get a bit grumpy when people start to talk about cancer and diet.  Usually it's someone lecturing me as I attempt to order the double chocolate mousse for dessert about how I mustn't because ' sugar feeds cancer'.  Alright, I know, I know.  Sugar isn't good for me.  But frankly it isn't good for any of us middle aged flabby people and I'm often in much better physical condition than the person lecturing me, so if I choose to tuck into a double chocolate mousse to ease my remaining hours on earth then that's my business, thank you very much.

On the other hand, I confess that I am sneakily becoming more interested in the links between diet and cancer, though there is such an overwhelming mass of articles from people advocating different food types, supplements, herbs, spices etc that it is difficult to pull the wheat from the chaff (so to speak).  I'm afraid I tend to roll my eyes with exasperation when yet another recommendation comes my way for eating some obscure grain from a plant that only grows on the upper reaches of mountains in Peru in the month of August.  Well, okay, I haven't actually seen that one.

But a little research shows that there are some genuine, scientifically proven dietary changes that are worth making.  One of the recommendations that initially had me rolling my eyes with an internal sigh was the one that's doing the rounds about vitamin D.  Was this just another fad?

Possibly not.  There is a solid selection of research that has proven a link between vitamin D levels and breast cancer.  Women with breast cancer have been shown to be more likely to have low vitamin D.  Women with higher levels of Vitamin D who already have breast cancer are likely to have smaller tumours and better survival rates.  Women with low vitamin D and breast cancer are twice as likely to have the cancer come back.

But before you dash to the fish shop for a double helping of mackerel, there is a word of caution.  There is certainly a link between vitamin D and breast cancer but the nature of that link is unclear. 

There is a theory that vit D receptors on cells can link to vit D which then prevents the cancerous cells from dividing and spreading.  But, because most scientific studies have been observational, it is possible that the link isn't causal at all.  Perhaps it's just a biomarker: if you have low vit D then it's one indication that your cancer is more serious.

That sends a nervous shiver down my spine because my recent check up found just one thing wrong with me: low vit D levels.  At the time I gave a relieved chuckle.  Low vit D!  Is that all!  But perhaps I should take it more seriously?

Yes and no.  There's no reason to worry that low vit D levels shows anything in particular about your cancer.  Especially if you live in Belgium.  While it is true that foods like oily fish and eggs are good sources, the majority of our vit D is produced when our skin is in contact with the sun.  That means that pretty EVERYONE in Belgium has low vit D levels.

On the other hand, it's a good idea to make sure that you don't have vit D deficiency anyway, because we do know that it has an important role to play in helping the body absorb calcium and to help the immune, muscle and nervous systems work properly.  Fifteen minutes of sun on the skin at least three times a week should do it.  If you live in Belgium and are more likely to get fifteen minutes of rain on the skin, then you might need supplements (though be aware that it is possible to get too much vit D and end up with too much calcium in the blood so it might be best to ask when you get your blood tests done).

Personally, I think this is just the excuse I needed to go back to Portugal and eat sardines in the sunshine.  Followed by a double chocolate mousse.    

My Special Place

I’m back in my special place: a converted stone mill next to a bubbling stream in Northern Portugal. 

I was last here one year ago, fresh from surgery.  Physically I was like a bird with a broken wing after my mastectomy; mentally I was blasted by my recent cancer diagnosis and afraid of the long road of treatment ahead.  This is where I rested, recovered and prepared for what lay ahead.  I would stand on the old stone in the middle of the stream at the end of the day and do my exercises over and over, determined to stretch my sliced muscles so that I could lift my arm above shoulder height again.  I would feel the warm stone firm beneath my bare feet, look at the serious stillness of the woods and cornfields at sunset, bask in the last gentle heat of the sun on my face and feel a healing power flow into me. 

I went back to this place in my head many times in the long nights of chemotherapy that came later, when I often thought , I can’t do this.  Just imagining myself back in the sunshine with the warm stone under the soles of my feet  would fill me with a sense of that healing power of nature and give me the strength I needed to get me through to morning.

One year later, I am back and my world is a different place.  I’ve completed chemo and radiotherapy.  My hair has fallen out and regrown thick, dark and curly.  I started a new exercise regime and am now fit enough to climb in the woods behind the mill without losing my breath.  I feel strong.

Today I stood barefoot on the stone again and let the sun warm my face.  The woods and cornfields look as beautiful as ever.  This time I can lift my left arm and point straight up to the blue sky above.  I confess, I cried.  But happy tears this time.

Facing my Cancer Demons

I went for dinner with a good friend the other night.  She took my hand and told me I looked amazing. 

"You've handled all this so well," she told me.  "You're so Brave!  So Inspirational!"

Now, I know that I am not Brave.  Nor am I Inspirational.  Brave is for people who jump into freezing lakes to save small children.  Inspirational is for amazing cancer patients (often terrifyingly young) who face a death sentence and yet go on to raise huge sums of money for research, or follow their dreams or climb Kilimanjaro or something.

Me?  I've just coped with a year of breast cancer as best I could.  And I'm keeping all my fingers crossed that I won't be called upon to cope with a more serious diagnosis.

On the other hand, it's jolly nice to be told you're amazing and inspirational so I have to confess that I've lapped up the praise. 

Then she said, "You must be glad it's all over."

But it's not over, I told her.  I'm not entirely sure it will ever be 'over': a close friend's mother has just had her breast cancer return in her lungs 17 years after her first diagnosis.  I went for my first year check up the other day without much concern but found myself overwhelmed by the feelings of powerlessness and the inevitability of bad news that coloured my hospital visits this time last year and ended up sobbing in the changing rooms when I got the all clear.  (A Scary Mammogram).

That's not me.  At least, it didn't use to be me.  I'm still struggling with the fall out from Cancer.

I love my friend, she's a super bouncy optimistic, can-do kind of lady, but (like so many of my other non-Cancer friends) she looked anxious when I started to say things that were less than positive. 

But you're on Tamoxifen, she reminded me.  You've had all the treatment.  There's no reason to think the Cancer will come back.  You mustn't worry!

This is all true.  But it is also true that there is a chance that my breast cancer will return somewhere else.  And breast cancer in the breast is, essentially, an inconvenience;  breast cancer in a more vital organ can be a death sentence.  Surely it's normal to be a least a little bit concerned about that?

It's great that my friends think I'm Amazing Cancer Babe and their feedback has helped me stay positive through all my treatment because the more they tell me I'm so brave etc etc, the more I've put on a brave face and that actually does help me feel much better than letting myself dwell on dark thoughts.  I'm a great believer in the power of both positive and negative thoughts (Don't Fall in the Nocebo Trap!)

But I wish more of my friends would accept that, sometimes, I need to face reality and share the dark thoughts too.  After all, I'm not just being irrationally negative.  So can't I admit to feeling scared without it being a big deal?

I read a great post by Carrie the other day about the roles we play when we have Cancer.  She describes how we  often put on a mask to the world and act out a role of being brave, optimistic, tough - no matter how we feel inside.  It's so true.  We do it even when we don't realise that's what we're doing.

I was talking with another friend about hair loss and she was surprised when I said something that revealed how difficult it had been.

"You coped so well with that," she said.  "You seemed okay with it."

Seriously?  I was as bald as a hardboiled egg for six months and I seemed okay with that?  Wow, I'm a much better actress than I thought.

Now that I have been cast in the role of Chloe the Brave, it is difficult to break free.  If I start being Chloe the Scared then people often fall into three camps:

The Jolly Campers: who simply refuse to accept that there is any realistic reason to think the Cancer might come back so we end up in some daft argument about the statistics;

The Psychotherapists: who listen to my worries but feel obliged to spend hours working through the issues to 'cure' me from 'negative' thinking so we end up in an exhausting discussion about my mental state;

The Fan Group: who admire my positivity and look disappointed if I start to talk about my fears so I end up feeling as I let them down.  

All in all, it's easier to put on a smile even when we aren't smiling inside.

Fortunately for me I have good friends who understand (especially those who have done this Cancer thing in some form or other before me).  When I tell them I'm scared about the future, or complain about my Tamoxifen niggles, or simply cry, they just let me get on with facing my cancer demons because they know that sometimes we have to look at the dark possibilities before we get on with being brave and inspirational again.

My friend who endured various forms of Cancer listens to me babble on and then she says simply, "Yeah, it sucks, doesn't it?"

"Yeah," I agree.  "It sucks."  And then I feel better.