Ms Motivation

It appears that I have run 5,164 miles more or less since my mastectomy in early 2012, and I guess it has taken quite bit of motivation to get there. Not that I often notice as running is just part of my life – more a question of when I will run rather than if on any particular day.  I’m a bit too inclined to run through everything as well – so much so that people congratulate me for not running and actually taking rest when I come down with a lurgy.

There are several reasons why I run – all the predictable stuff about keeping fit, avoiding middle age spread, keeping the wine trade and all its generous hospitality at bay and so on.  Then there is the motivation of doing something positive to manage the side effects of all my drug treatments – premature menopause writ large and all that goes with that.  Bone loss, weight gain and cardio health issues all become higher risks with zoladex and aromatase inhibitors.  And I want to keep my achy and swollen joints moving too.

But in spite of all these worthy motivations, sometimes getting out the door is just really hard, so I have a few other tricks to help deal with those “I don’t want to move” days.  Today’s solution was to take myself off for trot round the botanic gardens in Cluj-Napoca in the heart of Transylvania, and what good decision that was.  I thought there might a be few spring bulbs out but wasn’t really expecting to find sub-carpathian wild flower meadows and woodland groves full of banks of Hepaticas, anemones and primroses – all in the heart of a sizeable city.

I whiled away a happy couple of hours here, covering just about 7 miles – not quick ( though I did fit in a few hill reps) but what nice way to go for a Sunday morning run.  I nearly always take my running shoes when I travel – not least to counter food and drink but also to explore some of the amazing places I go to.  And at home, Caroline’s botanical tours are quite famous among my running friends as I drag them off to some local wildlife site to see the wild daffodils, or helleborines, or early purple orchids or some other wildlife treasure that gives me an excuse to run somewhere different, or even just a reason to take those first few steps when I’m not feeling the love.

Injection blues

This week I found myself lying yet again on a crumpled bed in a dodgy hotel somewhere in the former Soviet Republics, contemplating the landscape of fading injection scars on my belly. I was  trying to work out from the faint greenish-yellow of last month’s bruises where I should be stabbing myself. I don’t have an illegal drugs habit, though perhaps if I did, the picture wouldn’t be  very much different.

My ongoing breast cancer treatment means that I have a four weekly injection of a drug called Zoladex, to switch off my ovaries, and put me into artificial menopause. Having taken tamoxifen during my first round of treatment my oncologist suggested that aromatase inhibitors were the way to go after my recurrence, but you can’t take these if you are pre-menopausal.  This left me with a stark choice of yet more surgery to take my ovaries out, and all the risks that go with being cut up, or the monthly jab.

Zoladex is actually an implant that has to go into your stomach wall via needle more suited to injecting my horse than me and normally I let a trained professional take on this task.  The drug licence in theory allows you to have your jab a few days late, but you can’t have it even 24 hours early. No one appears to have researched whether patients metabolise drugs like this at different rates, and on balance it seems that I may be fast metaboliser (I can’t take codeine for instance as it gives me hideous night terrors – Hallucigenia falling off the ceiling and crawling all over you anyone?).

Whether this is true or not, I know that a couple of days before I’m due a jab, the headaches start building so I don’t want to go even a few hours over, and as my 28 day cycle hits on a Friday there’s no way I’m waiting over a weekend with searing pain behind my eyebrows.

I travel quite a lot to earn my living, and so I’ve opted a couple of times now to take the needle with me and inject myself (both times in Eastern Europe). I thought I was OK with it, but clearly I’m bothered at subconscious level, as I found myself wide awake at 5 am ready to smear on the lidocaine cream, when I’d careful planned to wake at 7.30am, rub on the cream (which takes an hour to work), have breakfast then do the deed before heading off to work.  The jab comes in a clever system of sprung-loaded and self-retracting needles so actually not too difficult to do in practice – the thought turns out to be much worse than the deed (though first time I did have my son standing by just in case I couldn’t pierce my own skin).

All done for another month, and I might even be in this country for the next one.

Cutting Deep

 

It’s that time again. When I switch from a fairly fit 50 year old into a ‘little old lady”. My steroid jabs last almost 3 months to the day and when they wear off, the transformation into a hobbling achy mess happens pretty suddenly. Swollen fingers, handgrip as strong as wet tissue paper, and random muscle and joint pains all over take quite a lot of the fun out of life.

 

And I’m partly blaming the NHS for this, because had I been offered a full mastectomy first time round, I probably would not be in this situation right now, but I wasn’t. As it appeared I had a single lump, they only offered to chop this out, along with a few lymph nodes followed by radiotherapy. Knowing what I know now, I should have had a mastectomy back then, which would have left me with no breast tissue for recurrence to grow in. Of course, hindsight is wonderful thing but living without a breast really isn’t so bad most of the time. But the NHS seems to be desperate to preserve your boob or some semblance of it at all costs. They know, and the statistics show, that around 20% of women having a lumpectomy and radiotherapy will have a recurrence, odds I didn’t know until my own recurrence. I think that’s too high to risk. But I was so swept up in the horror of diagnosis back in 2005 that I went along with what was recommended by the experts. My oncologist (the rubbish one that I dumped) insisted he would have offered the same treatment again when I posed the question second time round. But I’m certain the NHS has the balance wrong. I know some women find the idea of losing breast awful and somehow making them less of a woman, but a second round of treatment and the nastiness of 5 years of aromatase inhibitors as a pre menopausal woman mean I’m sure the original decision was wrong for me possibly many others. And that’s after previously slogging through the nastiness that was tamoxifen.

 

You read stuff about aromatase inhibitors being ‘well tolerated’. It may be even true – if you’ve already gone through the menopause. However when you start digging, it turns out that around a third of patients suffer crippling arthralgia, and most are left to suffer in silence. Luckily for me, when I changed oncologist, the new one referred me to a rheumatologist. After battery of tests to check that I didn’t have arthritis markers, she came up with the idea of trying depo-medrone injections. I can only have four a year but they are a lifeline – I know I’ll feel human again within 48 hours of being stabbed.

 

Time to call the doctor for my next dose.

I am not a number

http://imgs.xkcd.com/comics/probability.png

I love xkcd’s humour though often far too nerdy for me.  Every so often,  a comic appears that hits particularly hard – clearly his partner is on the breast cancer treadmill too.

This one made me think about survival statistics, and and the algorithms oncologists (and patients) use to make treatment decisions.  As far as the NHS is concerned I am a 100% success, as more or less all of me has survived this far.  My oncologist admits that they only count survival to 5 years as a success and anything after that is a bonus.  One of the tools used by oncologists to make treatment decisions is called Adjuvant Online which calculates the additional statistical benefit of particular treatments when you input your own data about tumour size, grade, node involvement, receptor status etc.  So with no additional therapy after my mastectomy, the software calculates that 93.9 people will still be alive at 10 years, with 3 having died of cancer and 3.1 of other causes.  Hormone therapy helps one more person survive while chemotherapy helps 1.3 to survive.  Chemo is utterly horrible though, and brings many lifelong problems, so the big question is deciding whether that extra benefit is worth it.  Because if you are the person it will help, it is a 100% benefit to you but there is no way of knowing whether it is you or not.  Just statistics, and the balance of probability.

The other trouble that I see is that surviving to 5 years is only the beginning. There are some cancers where you can claim a total cure, but if you have hormone positive breast cancer there is no such thing as a genuine cure.  Lots of people talk up the 5 year milestone as an “all clear” but in fact all it means is that you will have come to the end of your 5 years on tamoxifen ( or aromatase inhibitors)  and head out into the rest of your life with nothing left to protect you.  The hope is that the surgery, radiation and drugs will have conspired to kill any cancer cells over the 1827 days of tamoxifen ( and yes I took every single one of the bloody things), but if any rogue cells happened to survive, there is no longer anything to suppress them, and off they go.

And they did … growing into a sizeable lump by 14 months after I finished tamoxifen.  A lump that wasn’t detected by mammogram and only picked up when I complained about lumpy scar tissue.  So back on the treatment treadmill.