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.

Not the Usual Facebook Photos

I had a Facebook Self Pity moment this morning.

I made the mistake of checking Facebook and found endless photos of friends on sunkissed beaches with tanned, happy kids.  Seriously people, how many photos of turquoise seas entitled 'View from breakfast' do you think I can take?

Let  me share my Facebook Photos.

Photo 1: A mountain of boxes surrounded by  a sea of stuff in a storm of chaos.  We are moving country again.

Photo 2: Car being hauled up onto a tow truck.  Yup, that's the car that my husband needs at the weekend to start shifting the box mountain back across the Channel.  The car broke down on Monday.  The day before Belgian National Day when EVERYTHING closes.

Photo 3: Husband on the phone trying to find garage to fix car.  All garages in Brussels are closed until August because...everyone in Brussels is now on holiday.  Probably on a sunkissed beach with a breakfast view.

Photo 4: Daughter looking miserable on sofa.  She should be at the zoo with friends but is stuck home with ear ache.  Can we find a doctor who hasn't gone on holiday?  Can we heck.  Those sunkissed beaches must be seriously crowded by now.

Photo 5: This one's a selfie - me shaking in my shoes outside my oncologist's office waiting for my check up after my scary mammogram last week.  My husband was due to be with me, but is now at home looking after sick daughter and on the phone trying get either a mechanic or a doctor not on holiday.

Like my album? But of course, none of this really matters.  This level of crap doesn't compare with last July when we were stuck at home doing tests after my biopsy found cancer cells in my breast. (Oh and my daughter had to be hospitalised with a serious break in her arm in the middle of it all).  I think I can cope with a broken down car and earache despite the box chaos.

And honestly, being on a sunkissed beach can't compare with the high of being told by your oncologist that the tests have found nothing worse than a low vitamin D level.

After all, life is made up of good things and bad.  I'm lucky that I'm still here to live it, warts and all.

Besides, one more week and we'll be on holiday too.

I promise not to post any photos.

Discovering the Blogosphere

Writing this blog has kept me sane over the last, turbulent year.  I'm a firm believer that simply writing things down can make them seem more manageable - indeed studies have shown that writing can help with anxiety and grief ( The Write Way Through Cancer)

For me, sharing has made writing even more rewarding.  Horrible tests and difficult times feel less pointless if they can be blogged and can help others going through the same experience.  I love it when I see that I have had hits from all round the world, from Columbia to Japan and Russia.  If I've helped just one person prepare for a surgery through my Diary of a Mastectomy, or cheered someone through a dark day with my post on Ten Good Things About Cancer or encouraged one person facing chemotherapy with my Not so Scary Chemo Story, then it was worth sharing.

But, until recently, I was only dimly aware of the many other breast cancer blogs out there, largely because the sheer number of sites are overwhelming and difficult to navigate.  Then I discovered Marie Ennis O'Connor's great site Journeying Beyond Breast Cancer. which (among other things) includes a regular round up of the cancer posts that have moved her, inspired her or taught her something.  So I started clicking on some of the links.

Wow.  There are some awesome ladies (and the occasional guy) blogging about breast cancer out there.  I found posts that made me laugh and ones that made me cry,  posts that made me think and ones that made me yell, "Yes, that's exactly how I feel too!". 

So thank you ladies (and gents), I'm honoured to have been included in a round of up of such witty, inspirational, thought provoking writers.  And thanks, Marie, for making the Blogosphere manageable. 

I've focused exclusively on my Cancer in my blog, but one of the trends doing the rounds is to recognise the fact that we are all more than our Cancer by posting fifteen random facts about ourselves (thanks Nancy).

I'd recommend everyone has a go at this, even if you'd rather not share.  It's so easy to say glibly that we are 'more than our cancer.'  But it was only when I faced a blank page and challenged myself to find fifteen things that didn't mention the C-word that I realised quite how defined by Cancer I have become over the last year.  By the end, I had remembered that Cancer has only been one small strand of my life which has included much more exciting things... like Whale Sharks, Dr Who's TARDIS and beer. 

So here are my fifteen facts.  It was fun to write.  Try it!

1.       I've lived in six countries including Poland, Bermuda and Tanzania.

2.       I once (briefly) had a job teaching babies how to use sign language through songs.  I'm not sure how I ended up doing that because I can't sing in tune.  The babies didn't seem to mind.

3.       I have Irish parents and a son with a US passport but feel 100% English.

4.       I love scuba diving - but only in warm water.  I have no ambition to dive off British shores.

5.       I've been a serial volunteer with an eclectic selection of jobs including working with people with AIDS/HIV in rural Africa, children with cancer and a group of Afghan refugees squatting in a church.

6.       The most thrilling experience I ever had was swimming with Whale Sharks - the biggest fish in the sea.

7.       I can speak reasonable French and some Swahili but no Portuguese, despite going to Portugal every summer for the last decade.  Learning Portuguese has appeared on my New Year's Resolution List for years ...This year I will take lessons... I will, I will....

8.       I am so short sighted that I qualify for financial aid to get specs under the NHS.

9.       I hate cooking meals but love to bake especially creating cakes for my kids' birthdays - my masterpieces to date include a fairy castle, a mine craft world and Dr Who's TARDIS (which looked, though I say it myself, utterly awesome.  But, sadly, it wasn't bigger on the inside than on the outside.)

10.   I love being at home with my kids but hate the housework that comes with the job and am still looking for a better job title than the obnoxious 'housewife' as I'm definitely not married to my house.

11.   I'm the youngest of four siblings, married to the eldest of four siblings.  He's the boss.  At least, I let him think he is.

12.   My friends keep me (relatively) sane.  I have close friends who come from all over the world  (Spain, Sweden, Korea, Canada, United States, New Zealand...) and who live as expats all over the world (Zambia, Japan, Malaysia...).  I've known my oldest friend for over forty years (since we were three!)

13.   I love scary fairground rides.

14.   I'm hopeless at sport, especially ball sports (see number 8), but love to play squash because you can have a great game even if you're really rubbish.

15.   I've tried over seventy different Belgian beers and made a montage of beer labels which is hung on our wall.  I'm working on a second montage, there's a lot of wonderful Belgian beer to drink...

A Scary Mammogram

I went for my check up today - one year after my last ultrasound revealed a lump in my breast.

It was terrible.

I wasn't too worried beforehand;  even though I do worry about the Cancer coming back, I didn't think they'd find anything quite so soon after finishing chemo and radiotherapy.  But once I was sitting outside the radiology changing room cabins, waiting my turn, it brought back a wave of memories and emotions that I wasn't expecting.   I had forgotten how awful it was going through test after test, watching time seep away as we waited endlessly in hospital corridors, getting results that were not good and feeling utterly powerless.

Just a check up, I told myself.

Eventually it was my turn to strip in the cabin and troop self consciously through to the mammogram machine where I remembered what torture this procedure is (perhaps it is because I have such a tiny breast that they have to squeeze it to death to get it to stay put?  At least I only have one to squish flat now...)

Then back to the cabin to wait for the ultrasound.  Twenty minutes later, I was called back for another mammo image and alarm bells started to ring. 

Just so we can get a larger image, she reassured me. 

 A larger image?  Why?  Was there something in the smaller image that they needed to check out in more detail??

So I was feeling pretty stressed by the time I got in for the ultrasound.  The doctor took a long time examining my breast and finally said...it's fine.  Phew.  Then he checked my chest and lymph nodes on the mastectomy side and I held my breath every time he paused to get a better look.

Then he said, "It's fine but I need to show my supervisor. "

What?  Show his supervisor?  Serious alarm bells were ringing now.  He said it was fine but, hey, let's face it, I've heard that before.  Don't worry, we're sure it's just cysts but let's take a biopsy just in case.  Yeah, right.  So I waited for him to come back and the longer I waited the more scared I got. 

I thought, fuck, fuck, fuck, they've found something.  You don't check with your supervisor for no reason.  What will it be next?  A biopsy of the lymph nodes?  I know THAT will hurt.  And what will they find then?

By the time he finally came back I had worked out what I needed to do to cancel our holiday so I could have more tests, I had my husband's telephone number on speed dial and a packet of tissues at the ready.

"Everything's fine," he said cheerfully.

I'm sorry?  All fine?  Really?  Really truly?

I was back in the changing cabin before I could really take it in and then I sat on the bench and sobbed.  And sobbed.

When I had gathered myself together, I left the hospital with my head ducked so that no-one could see my red eyes and went straight to the shopping centre.  I went to the same shop that I visited this time last year, but then I was buying button-up shirts to wear after my mastectomy when I knew I wouldn't be able to lift my arm.

This time I went straight to the pretty summer dresses and bought three. 

Because it looks like I'm going on holiday after all.

The Trouble with Tamoxifen

If you're brave enough, take a look at the possible side effects of Tamoxifen listed on the packet.  It's awe-inspiring - everything from hot flushes to dizziness to uterine cancer.  So I was somewhat nervous when I started my ten year stint of taking the daily drug a couple of months ago.

But, as I reported in an earlier post, things have gone remarkably well with few side effects.  The only significant problem I have is something totally unforeseen... remembering to take the wretched thing.

I did so well in the beginning, never missing a day.  After a few weeks, I started to forget to take it at my regular morning slot but somehow always remembered by lunch time.  Then the holidays began and I went to pieces.  My routine is all over the place and I sometimes can't remember what day of the week it is, so remembering to take that little pill is a major challenge and I confess to waking up a few mornings with the sinking realisation that I completely forgot to take it the previous day.  I try to take it with my morning coffee on the grounds that caffeine addiction ensures that I never forget to make a coffee first thing, but the slightest change of routine - a sunny day so I take my coffee outside for example - can mean that my pack of pills lies forgotten while I enjoy my caffeine shot in the sunshine. 

This week I outdid myself.  On Monday, my husband made me my morning coffee.  By this time I was keeping the pack of pills right next to the coffee jar but, as I didn't make the coffee myself, I didn't see the packet as I enjoyed my breakfast and never even thought about my pill.  Then the kids and I headed to the airport for quick visit back to London ...and I forgot to pack any Tamoxifen at all.  Oops.

I remembered on the plane.  But, by the time I arrived it was really too late to do much about it so I waited until the next morning to go straight into the chemists and beg for help.  By this time, of course, I had already missed one day.  The very nice pharmacist told me that she could give me an emergency supply but she needed to know the strength; unfortunately I didn't even realise that Tamoxifen came in different strengths.  So I waited until my husband got home in Brussels and he checked for me.  Back to the pharmacist to report: 20mg. 

But by this time it was a different pharmacist and he told me that he needed more proof that I really was on Tamoxifen. I wanted to say - just look at my hair!  Instead I got my husband to scan my Belgian prescription and email to me.  The pharmacist looked doubtfully at my oncologist's scrawl on the screen and shook his head.

"We don't have that brand," he said.

Surely one brand of Tamoxifen is the same as another?  But it seems that a pharmacist can't make that decision - it requires a doctor.  I'd just met a friend for drinks and a catch up so, instead of going to the planned riverside pub, I took her to a walk-in clinic and we chatted in the waiting room.  You see, I make a great date.  Mind you, it somehow seemed appropriate as I updated her on the events of the last year which has involved many, many hours in hospital waiting rooms.  An hour later I went in for five minutes to see a doctor and emerged brandishing the required prescription as if I had been awarded first prize.  We got back to the chemists with minutes to spare before closing time and, at last, the pharmacist accepted that the required paperwork had been done and handed over the pills.

My lesson has been learnt.  I now have an emergency supply of Tamoxifen in my handbag, just in case.  I have another pack in the car and the details of my prescription on my phone.  And I'm going to set a daily alarm to remind me. 

And yet, in a way, I feel oddly cheered by this latest adventure.  If I forget to take my medication for a day or more, it's because I don't even think of the Cancer in that time.  It's taken a year, but life is finally getting back to normal. 

Maybe next time I meet my friend, we might even make it to the pub instead of a hospital.

Celebrating my Cancer-versary

This time last year I was scared.

 

It was a gloriously sunny start to summer.  I remember my husband and I sitting on a park bench in the sun and crying together because I had just been diagnosed with breast cancer.  I remember taking my son for ice cream and breaking the news.  I remember trying to explain to my daughter why all our summer holiday plans were on hold.

Fast forward exactly one year and I was scared again.  But this time in a good way with a silly grin all over my face as I was strapped into my first ever loop-the-loop roller coaster ride next to my son.  He turned to me with the knowing smile of someone who has done this before and asked if I was ok.

"Of course," I said. "It can't be as scary as chemo."

It was a flippant reply but it's true that the last year has put things in perspective.  No matter that we are about to move country yet again and we don't know where we are going.  Just like last year, it's a gloriously sunny start to summer and I'm going to take time off from packing boxes to enjoy it with my loved ones because this is the most precious thing of all.  Who knows what the future will bring?  All we can do is live each moment as fully as we can... so I wasn't going to say no when my son challenged me to do the roller coaster ride.

And how was it?  Awesome.  So awesome that I went back and did it again.  And then did every other scary ride in the park.  Eight utterly terrifying rides later and my son was very proud of me.  I've got to admit that I was pretty proud of myself - and felt exhilaratedly, fabulously alive. 

Growing Pains

Today I used my hairdryer.

This is a cause for celebration: nine months have passed since the Head Shave and I finally have some hair to dry!  On the other hand, I've also had nine months of pulling a wig or hat over my baldie head and not having to worry about wayward hair. 

A month or so ago I had a black skullcap of new hair which actually looked rather trendy-chic in a severe sort of way.  I've lost count of the number of people who have told me that it looks great and I should keep it that way (which slightly makes me wonder if that's a reflection on the bird's-nest of hair I had Pre-Cancer).  Apparently I have a nice shaped head and can get away with super-short hair -  either that or I have super-nice friends who know how to make me feel better, which is, perhaps, more likely.

Anyway, chic or not, it didn't look like me when I looked in the mirror.  And it was still so short that I felt I was carrying a sign on my forehead: Just Finished Chemo!  So I might keep it short but it needs to do a fair bit of growing before I'll feel like Me again.  And there lies the problem.  My chic skullcap is gradually disappearing under new growth and my hair is springing into life with glorious vitality.  In all directions.  With curly bits and crinkly flourishes.  New hairs reach for the sun like shoots on a bean plant.  The unexpectedly beautiful Chic Black is softening into my more usual Mouse Brown -  except that I have lots of new Grey Highlights. And like a bush that explodes back into life in the spring time, I look decidedly shaggy.

So, for the first time, I have enough hair that people who don't know me probably think that I have simply chosen to have it this short.  That's great.  Except that it now looks a mess and I suspect that it's going to get a lot messier before it gets much better.  So there I am, back in the bathroom with my hairdryer, applying de-frizzers and trying to get it to lie flat.  Ah well, I guess this is a problem that I am happy to have and soon I hope I'll have enough to go for a celebratory and exceedingly indulgently expensive haircut. 

After nine months of savings on hair products and haircuts - I deserve it.

Tamoxifen: Three Month Update

Oh dear. oh dear.  I just re-read my last post and it's terribly melodramatic.  All that stuff about the enemy camped at the gate and being under siege.  You see, the truth is that there are days when I do feel like that, when the enormity of everything that has happened over the last year builds up inside me and comes tumbling out in black and white on the page.

Then there are lots more days when I feel absolutely fine and don't write a thing.

And that, dear Reader, is the danger of reading what you find on the internet.  If you Google Tamoxifen, you will find dozens of stories from women who are sharing their stories because they are having a tough time and need advice or simply someone to sympathise.   When my oncologist first told me that I should take Tamoxifen for ten years, I wasn't too worried at first, after all, the idea of taking a tablet every day as pretty minor compared with the terrors of chemo and radiotherapy.  But then I started surfing  and it seemed that every woman on Tamoxifen was suffering a terrifying list of symptoms which soon convinced me that I was facing years of hell.

It is now three months since I started Tamoxifen and I have not written a single update.  In fact, I barely written at all in the last couple of months. Is that because I have been struggling with the burden of toxicity in my system?  No.  It's because I have (almost) nothing to report.  Not a thing.  Life has swept back with all her glorious normality and I have not once been inspired to start typing.

Of course, I have some physical symptoms.  The inevitable hot flushes are, however, so minor compared to what I experienced on Taxol that they are barely worth reporting.   I have some slight dizzy spells when I eat which I am putting down to Tamoxifen (dizziness is listed as a possible side effect although, to be honest, that list seems to include pretty much everything you can think of).  And....that's about it.

So I guess this post is a rather long winded way of telling you ....that I have nothing to tell you.  Everyone's different and there are certainly women who have a rough time with Tamoxifen but I suspect there are lots more like me, quietly taking Tamoxifen without experiencing anything to prompt them to share their stories.  It might not make for the most exciting post, but actually it's also a story that deserves to be shared.

Cancer One Year On: Under Siege

Today is a special day.  It's exactly one year since I went to the doctor to ask about the strange lump in my breast. 

There is so much to celebrate.  It's difficult to remember now how dark things seemed in those early days, when my liver scan suggested a possible metastatis and we worried that I might not live to see this anniversary.   My mastectomy scar has healed up beautifully, chemo is a distant memory and radiotherapy is all done.

And yet....It's not quite the celebration I had anticipated.  It's as if the battle is over but I am still under siege.  For much of the past year I have been in full fighting mode, focusing on getting through one day at a time and kicking Cancer's butt!  I expected to feel awful, so even on my worse days it was just a question of taking one step at a time.

But I suppose I thought that by now - a whole year since this war was declared - things would have gone back to normal.  And, indeed, things are much improved: Cancer is no longer the focus of our family life and I feel much better than I have for a long time.  And yet I still don't feel 'normal' -  my chest is still post-radio-sore, my arm has gone stiff and needs stretching yet again, I am suffering side effects from Tamoxifen that are very mild compared to chemo but I worry that I'll be stuck with them for the next ten years.  I worry generally.  I have tingling in my fingers and I worry about lymphedema.  I feel dizzy and I worry that there is an undetected tumour in my brain.  I worry that I used to be a person who never worried about her health, never went to the doctor, and now I am turning into a hypochondriac.

So that's what I mean when I say I feel under siege - open warfare is over and life has a semblance of normality but the enemy is still camped at the gate.  I can imagine fighting my way through the miseries of surgery, chemo and radio with a brave smile on my face - only to be ground into the dust by the minor, daily discomforts of Tamoxifen.  I can see why the oncologist warned me that this is often the time that women experience a bout of depression.

So - I will not surrender to the darkness camped at the gate.  I will celebrate my new, funky (if still rather short) hairstyle and the fact that I can finally go out bareheaded.  I will stretch my stiff arm and be glad that it has come so far from the days just after the operation when I was sure I would never have full movement again.   I will rest and be gentle with myself when I'm tired and accept that my body has been through a lot, and exercise and push myself when I can because I need strength in my body to face the future.  I am strong.  One year on and I am alive... and that is a lot.

Not Ready to Hang Up my Headscarf

At the weekend I bared my head in public for the first time since last September.

Appropriately, it was for a thank you party in our house for all the people who helped out during my treatment, so it was an easy audience for my new hair.  I got lots of compliments and I've got to admit, all things considered, I am quite happy with the way my hair is coming through.  It's different from the long, sun streaked fair hair I used to have but - having been worried that I would be at least temporarily, totally grey - I'm quietly pleased with my new dark-haired (if shot through with grey) pixie-look.

There's a big difference, however, between sharing my new look with people who are in the know and have seen my metamorphosis all the way through, and people who might think that this close cropped look is the way I actually choose to style my hair.  I mean, it's okay, but the truth is that  I look somewhere between a wannabe arty type and a council estate vandal. 

So I'm not sure I'm ready to face world bareheaded just yet.

And if I'm really honest, there's a deeper fear lurking beneath my headscarf too.  Last summer, losing my hair felt so scary, like I was being forced into a Public Declaration of Sickness ('Look at me in my headscarf - I've got CANCER and might DIE!').  Of course, my super-cool wig saved the day and let me go anonymous when I chose to but increasingly I found that I was more comfortable going out in a headscarf.  I didn't mind that people could see what I was going through any more, in fact it made life easier ('Look at me in my headscarf - I'm Sick so you'd better be nice to me!').  And there's something socially liberating about going through chemo: all you have to do is turn up to things and smile and everyone thinks you are some kind of heroine. ('Look at me in my headscarf - aren't I Brave?').

Am I ready to go back to being just a mum with a dodgy hairstyle??

My friend's mum has glaucoma and is now almost blind and has been issued with a white stick.  The stick is not, however, really to help her find her way around.  Instead it is a signal to others that they need to be patient when she can't read the menu, or struggles to enter her PIN number.  People are much more tolerant with an almost-blind person than they are with a regular old lady.

And I confess, my headscarf has become my white stick.  It reminds people, friends and family as well as strangers, that I still get tired sometimes even though treatment is finished.  It is my signal to the world that my head is still very much in Cancer Patient Mode even if my hair is beginning to suggest that I should be Normal again by now.  I don't feel Normal.  I don't feel ready to be treated as if I am Normal just yet. 

So this morning I cleared up after the party and slipped my headscarf back on to go and do the shopping.

Look at me in my headscarf.

And be patient for a little while longer.

Breast Reconstruction: It's OK To Say No

Now that the active part of my breast cancer treatment is finished and my mastectomy scar has healed, several friends have asked when I will start reconstruction of my breast. 

I shrug and tell them that I will meet the surgeon in due course and explore options.  But I'm not in a hurry because I don't think I will follow that route.  I think I will leave my lopsided, scarred chest exactly the way it is.

I've been surprised by how shocked many people are by this response.  It seems that most of my friends didn't even think about whether I would undergo reconstruction.  They try and reassure me, thinking that I'm either afraid of the surgery itself or worried that the end result will not be what I'd hope.  Give her a bit of time, they seem to be thinking, and then she'll see sense. 

But I've had time to think about this.  Yes, I am afraid that the surgery would be a long and painful process.  Yes, I do worry about the end result because it will never be quite the way was before.  But this isn't just a negative 'I can't face any more procedures' kind of response - even if I could wave a wand and have my old breast back I might have to think about it (I have mixed views about breasts these days).  I completely respect women who decide that reconstruction is for them, but I also worry that society and the medical profession have a tendency to simply assume that reconstruction is just the next, inevitable step in the process of treating cancer. 

From my point of view, I am now as healthy as medicine can make me.  Surgery will not affect my chances of cancer recurring one way or the other and my scar has healed up nicely and doesn't need any medical intervention for health reasons.  So why would I undergo more surgery?

To be comfortable in public?  I can understand that a silicon prosthesis might simply not be a practical solution for larger breasted women: it can be heavy and uncomfortable and it's never going to offer a cleavage.  But for me, an A-cup girl, it works really well.  I have the best fitting bra I have ever had, it's comfortable and gives me a great shape and I never had a cleavage anyway.  I admit that it's a fairly solid bra so it limits evening dress a bit but I can live with that.  Even my swimming costume looks good.

So should I do it for my husband?  Well, maybe if he was seriously disturbed by my new shape and didn't find me attractive any more I'd have to give it more thought.  No doubt, if you ask him, he might confess that he'd prefer my old body.  But we're both getting a bit saggy and baggy and padded round the edges in middle age - I'd rather he still had the body he had ten or twenty years ago too but that's okay.  Our scars and extra baggage are reminders of the life we have shared together and that's not a bad thing.

And what about my kids?  We're pretty relaxed about nakedness in my immediate family so inevitably the kids have walked in on me coming out the shower and seen my new shape.  They've got used to it and don't really care one way or the other.  And I can't help feeling that it is a good message for my pre-teen daughter: yes, my body is not conventional but I'm comfortable in it and that's just fine.

So that just leaves me to strip away everything else and take a good long look at myself at the mirror.  I have to ask honestly, am I really happy with the way I look?  Can I live with the scars or will I always feel uncomfortable, however well I disguise them?  For some of us, the answer will be no.  And to them I say, that's just fine - surgery is, I hear, really great and will result in a shape that you can be proud of and enjoy.  Go for it! 

But for others, like me, we'll think we look just fine the way we are.  I don't mind looking in the mirror and seeing my scar.  More than that, I'm proud of it.  It marks a journey that I have made.  When I look at the space where my breast once was, I don't see that I am less, I am reminded that I have learnt more about what matters in my life and the blessings that I had all along but didn't always recognise.  

When the time comes, I will meet the surgeon, get all the information and make a final decision.  But I doubt she'll change my mind and I'm happy that I'm making a good, positive, informed choice for me.

So don't ask me when I will start reconstruction - ask me whether I will reconstruct.  There are good, positive reasons for either answer.  The most important thing is that society and the medical profession remembers that this is the question that needs to be asked first.

Prescribing exercise?

I am very lucky - I've been treated for my breast cancer by a hospital that takes exercise seriously.  Twice a week, throughout my treatment, I have attended an exercise class with other women in various stages of their breast cancer treatment.  But today I heard that the course might be under threat because the hospital cannot get funding.

That raises the question: Should exercise be provided as part of the prescribed treatment for breast cancer?

The science is certainly there to show that regular exercise reduces the chances of breast cancer recurring.  I have to admit, however, that there is little scientific about the class I attend at hospital: we do some abdominal and weight exercises and use the cardio-vascular machines in exactly the same way as most Bums and Tums classes and workout regimes.  So should the hospital provide something that could be found at any regular gym?

I strongly believe that the answer is 'yes' and it's less about what we do and more about the environment.

First, it is deeply reassuring to have physios overseeing our exercise routine.  I didn't need to have specific appointments with a physio after my mastectomy because I was seeing my physio twice a week at my exercise class anyway.  And she was still there to advise me a couple of months later when the problems with mobility in my left arm resurfaced.  She was there to reassure me that it was fine to take part in the exercise for my arms without worrying about lymphedema and she told me how to keep going when I was in the middle of chemo and just looking at an exercise bike sent my heart rate through the roof.  Now that I have finished the active treatment and headed into a period when it is known that women often suffer from depression- she's still there with her bounce and enthusiasm to encourage me on my way.

Meanwhile, I have also done the journey alongside a good crowd of other women going through the same process: we compare the hair appearing on our bald heads, encourage each other when times get tough and keep each other going when the slog all seems too much.  After all, if they could keep going through chemo, then I knew I could too.

Yes, I could have joined a regular exercise class and doubtless met another great crowd of women.  But would I have been brave enough to take my bald head to a class of gym bunnies with nice hair, to keep turning up when the exhaustion of chemo meant I couldn't really keep up, to try arm exercises when I was terrified of lymphedema or to reveal my lopsided shape under a gym T shirt when my radio-burnt skin meant I couldn't wear a bra?

Probably not.

Whereas now, I am physically more confident, my hair is regrowing, soon I will be able to wear my bra again so no-one will know my curves are not my own and I've even got some muscle in my arms.  I've learnt to love my bi-weekly exercise hit rather than seeing it as a necessity and, when my hospital course comes to an end, signing up for a regular gym will be a priority. 

So, as a result of my relatively inexpensive hospital-organised class, I am much more likely to incorporate regular exercise into my regime which will reduce my chances of having to come back for expensive chemo and radiotherapy treatments by an amazing 25%.

That's got to be a good investment, hasn't it?

Hooray for Coffee!

How I love to start the day with a black, sweet, steaming cup of coffee!

When I was going through chemo, I imposed a fairly strict regime on myself: no alcohol, lots of fruit and veg...and no caffeine.  I still maintain that this totally unscientific approach helped me both physically (if nothing else it meant that I tended to drink more water which seems important when your body is being pumped full of chemicals) but it also gave me a sense of having something I could control at a time when otherwise I had no choice about what was being done to me.

But, the very first morning after my last chemo, I celebrated with a glorious mug of morning coffee.

I felt a little guilty as I slipped back into 'bad' habits but now some nice scientists in Sweden have come up with some wonderful results that mean I should actually be drinking more coffee - ideally two cups every day.  How great is that?  It seems that coffee might make Tamoxifen more effective and can reduce the recurrence of cancers by 50%.  Oh yes, you read that correctly - indulging that caffeine habit alongside your daily pill can actually reduce your chances of getting cancer again by half.

I'm always a bit cynical about these trials - sometimes it seems as if scientists can prove anything if they put their mind to it - but they aren't the first to identify coffee as cancer-fighting: an earlier test in the US linked coffee consumption to a reduction in the incidence of skin cancers.  That's good enough for me.

Time to put the kettle on and breathe in the glorious aroma of cancer-busting coffee.

Radiotherapy Postscript: Still Cooking

It seems that my cheerful assessment that radiotherapy was 'not much worse than a series of X-rays' was a little premature.

Two days after my last radio, I came out in an alarming rash across my chest and the skin felt more fiery than ever. As I had just started applying the cream given to heal the skin, my first thought was that I was reacting to the cream. But I soon noticed that the rash exactly followed the right angles of the box marked out on my chest, despite applying the cream rather less precisely. The hospital confirmed that it was likely to be a late reaction. 

Basically I was still cooking. 

Over the next few days the skin went a deep red colour and, while the skin on my chest calmed down, my armpit became very painful - too painful to sleep on that side. I also had the 'cording' issue return, so when I stretch my arm it hurts and I feel a cord pulling it back like an over tight guitar string under my arm. 

 Meanwhile I had started tamoxifen and begun to notice a mild return to menopausal symptoms: gentle hot flushes and the beginning of the terrible embarrassing itch caused by vaginal dryness. I was lying awake at 3am again thinking, is this a return to endless insomnia?  Is this my future on tamoxifen? And then struggling through tired, uncomfortable days. Post radiation tired? Or hormonal tired?
 
It's now over two weeks since my last radio and first tamoxifen.  The skin on my chest is still an angry, purplish red but it doesn't hurt unless it is rubbed.  The skin under my armpit is black and peeling rather alarmingly but otherwise feels much better. The cording is still there but is responding to exercises, I'm tired but sleeping better and my other tamoxifen side effects have also subsided again...so far.

So overall, I still stand by my earlier post - radiotherapy couldn't have gone better.  Even if I still wasn't quite cooked when I said it.

So How Was Radiotherapy?

It was April Fools' Day but the nurses weren't kidding when they said goodbye - I have reached the end of a long road.  Nine months after my diagnosis at the end of June last year, I completed my last radiotherapy session on April 1st. Nine months?  Was it really so long?  Time has taken on that strange quality when it seems impossible that I have lived under the shadow of cancer for so many months and yet, at the same time, my diagnosis feels a lifetime ago. I have posted rarely during the last few weeks for the simple reason that radiotherapy has bitten deeply into my free time: the hospital was a good 40 minute drive on good traffic days and having daily treatments means the days vanish quickly.  But that was merely a logistical issue.  The radiotherapy itself has been quick, easy and painless.  Every day I arrived at hospital, got my hospital-issue-but- fluffy dressing gown out of my locker (not sure the NHS would give this arriving-at-a-spa feeling, my Europa hospital here in Brussels felt decidedly posh).  Most mornings I had a short wait before being called into a cubical to strip to the waist, put on the dressing gown and continue through to the radiotherapy room itself.  They would prepare the table so that I could take off the dressing gown and lie on my back with my arms up behind my head on supports.  The most difficult part of the process was getting me in position with several staff pushing me a fraction this way and then that while beams of infra-red light bounced weirdly on the lines painted on my chest.  It seemed a millimetre-precise process so, once in position, I had to stay very, very still.  There was a lovely photo of trees lit by sunshine on the ceiling of my radiotherapy room: I am now familiar with pretty much every twig. Not that the zapping bit took that long: everyone else would clear the room and then the machine would move around and make killer-robot-gun noise at me, fortunately entirely painlessly, for around twenty minutes.  Then everyone would bustle back, let the table down and that was that. And side effects?  I saw the radiologist for a last check up this week and he had a long list of questions.  Do you have swollen hands?  No.  Pain in the armpits? No.  Respiratory problems?  No.  Bone pain?  No.  Redness on the skin?  Well, a little bit.  Soreness?  A little sensitivity: as if I have sat in the sun a bit longer than I should.  But dryness, flaking skin, itchiness?  No, none of the above.   It made me realise how many possible side effects there are and how (almost embarrassingly) lightly the radio seems to have affected me. And finally, fatigue?  Like at the end of chemo?  Well, yes, I'm pretty tired.  But bone-draggingly exhausted like back in early Jan when I'd look at the stairs and wonder if I could make it to the top?  No, nothing like that.  And to be completely honest, the few hectic weeks have been decidedly socially hectic so I'm not too surprised to feel tired. My skin is now fragilisé as they say here, so I will need to use lotion on it for the rest of my life and be a bit extra careful with the sun.  But all in all, the radio couldn't have gone better.  Has it worked?  Its purpose is largely preventative so only time will tell - but the doctors are confident that the chance of recurrence is as low as it could be. Next: Tamoxifen. I took my first tablet nervously.  Who knows what side effects the next few weeks will bring? I know that some women find this part really tough.  And others don't.   As always, the scariest thing about cancer treatments is the what ifs...  So all I can do is swallow the pill and be glad that I don't have to drive anywhere and sit in waiting rooms for this part of the treatment. Meanwhile I was rather shocked to walk out of my oncologist's office and realise that I have NO MORE doctor's appointments until my first check up in July!  It feels both liberating and terrifying to be let loose alone in the world without a doctor to hold my hand.  My oncologist recognised the mixed feelings, however.  He warned that the next few months, just when you would expect cancer patients to be wild with joy, can often be a period of depression.  I guess we have to shift from fighting mode, from being the rock-star-status-cancer-victim among our friends, to getting on with normal life again.  If we can remember what normal life looks like. Fortunately my lovely hospital tries to help with this by continuing to offer twice weekly exercise classes, so I get the benefit of exercise (and amazingly I always feel better about everything after a class despite being very non-sporty all my life, what a revelation!) as well as seeing other cancer ladies and not having to wean myself off the comfortingly familiar smell of hospital corridors just yet. Better still, thanks to the classes I am in better physical shape than I was nine months ago when I was diagnosed.  My hair continues to grow - I have a dark, shaven-jailbird hairstyle just now, not quite ready for public viewing yet but getting that way - and my eyebrows (once down to three hairs in total) and eyelashes (which went entirely) are nearly back to normal.   And I'm sitting peacefully at my computer with a cup of coffee without having to rush to get out the door for my next appointment.  I don't know what cocktail of emotions will hit me over the weeks to come but right this moment, life feels good.

Spring will heal me

Bleuch.  The lurgy has arrived.  It's no great surprise: my husband was home all last week with fever in the high thirties and this weekend I've been nursing my daughter with the same symptoms.  I guess I was kidding myself when I thought I could hold it at bay.

Even so, it is ironic to fall sick now after my body's marvelous resilience during the chemo days when my white blood cell count hit an impressive low of 200 and yet I didn't get so much as a cold.  Now I am starting to run a temperature, my chest hurts and I am coughing.

The good news: I don't have to race to casualty as I would have in the chemo days.  I checked today and I can go ahead with radiotherapy even with a low grade fever and if I have to miss a day, it isn't a problem.

The not so good news: I somehow have to not cough and remain motionless for twenty minutes of therapy every day.  And even though my limbs are crying out for a long soak in a hot bath...baths are forbidden during radiotherapy and a shower just isn't going to have the same therapeutic effect.

I have faith that my incredible body will see this wretched virus off though.  Okay, my body did let me down a bit by letting the cancer fester in the first place but an immune system that still operates with a white blood cell count of 200 is something to be proud of.  And there are signs of returning vitality everywhere: two months after my last chemo and my hair is a good centimetre long and as soft as ducks' down.  A five o'clock shadow marks my returning eyebrows and (at last!) my embarrassing itch is a thing of the past.  Hot flushes and the occasional night sweat remain but I wait to see if this is my hormones recovering or signs of them heading off the next journey a bit ahead of schedule, is this an early menopause?

As the snowdrops bloom and daffs push up through last year's fallen leaves - it feels as if my body is responding to springtime and will surely ward off a winter virus as surely as the morning sunshine banishes the last frosts.

I can no longer wear my parrot

Seven weeks since my last Taxol and my hair is visibly growing.  Last weekend I had invisible white fuzz, this weekend the top of my head looks as if someone has coloured it in with a soft graphite pencil.  My wig is now itchy and uncomfortable so I wear a headscarf all the time. 

This week a kindly nurse at hospital complemented me on my headscarf, at least, I think that's what she said.  The problem with dealing with cancer in Brussels is that I'm always feeling my way through a fog of French, only half following the plot.

Taking the chance that I understood correctly, I thanked her and explained that I can no longer wear my wig comfortably.  Later I had a horrible thought.  You see, I always confuse the French words for 'wig' (peruque) and 'parrot' (perruche) in my head and I wasn't sure which one I'd used.  Had I told the kindly nurse that I can no longer wear my parrot?  I'm not sure how I will face her at radiotherapy now...

Doing cancer in school-girl level French has certainly been an interesting journey.

I have a bit of a block when it comes to numbers so being asked for my birthdate or phone number sends me into a blind panic.  (I send up prayers of thanks for the Belgian septante for seventy and nonante for ninety - what language comes up with 'four twenties and fifteen' as a convenient way to say ninety five?).

I have sat anxiously in hospital corridors waiting to be collected having followed the directions of the receptionist, wondering if I am, in fact, in the right place at all.  (Did she say turn right or go straight ahead?  Are they currently searching for me in a completely different corridor?  How will I ever know?? )

I have given up trying to understand WHY I need to take medications and instead obsessively repeated everything in basic words to be sure that I definitely understand WHAT I need to take.  (Er, was that twice or twelve times?  What's the French for  "Will I die if I overdose on this?").

And as for my hospital exercise class - my heart rate alarm goes off if anyone speaks to me while I am on the treadmill because I am concentrating so hard on understanding that I forget to breathe. 

The worst is, however, when you have to go into that little cubical to prepare for tests and examinations.  Did she say take off everything except knickers?  Everything above the waist?  Or was it just "Wait here to be collected"?  Will I walk through the other door, stark naked, into a waiting room of clothed people because I misunderstood??  Scary stuff.

I guess there is always scope for misunderstandings in any language.  This week, after my first radiotherapy,  I sent out an update email to family and friends entitled 'Starting Radio'.  The replies made me laugh: I'd forgotten that the world out there does not add a silent therapy to everything.  Various friends thought I was make a guest appearance on a hospital radio station.  Even more charmingly, one thought I might be starting as a DJ.  As I am no-where near cool enough to be a DJ in any language, I was secretly delighted that he jumped to that conclusion.

In any case, if I end up on the radio I won't have to wear my parrot...