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.

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.

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.