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.