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.