Showing posts with label my prognosis. Show all posts
Showing posts with label my prognosis. Show all posts

Saturday, February 16, 2013

A reason for the younger woman to keep eating toast


Day 69 

General status update

Fatigue/weakness: slowly improving

Hair: Mostly still attached, but thinning a little. Am starting to find its extreme shininess a little sinister, in the circumstances.

Nausea demon: Currently off-duty, and gone fell-walking. Lucky him.

Chemo Muse: Very unhappy with me for general debility, lack of application and for letting a virus take over my computer (as if I had any choice in the matter)

Despair Demon: Found a gaping hole in my psychic defences after two extraordinarily bad weeks, and has moved right back in. He keeps reminding me that we are only halfway through the chemo, and after the chemo has finished there will be several weeks of radiotherapy, which may inflict permanent damage on my already damaged right lung, not to mention burning of the skin, and more debilitating fatigue, and then there will be five years of the anti-oestrogen drug Tamoxifen, which has all sorts of unpleasant side effects. He has also been reminding me how nice the weather is in Goa at this time of year.

Chemo Brian: keeps offering me mind-altering pharmaceuticals from the sofa to cheer me up, and in truth being away with the fairies is looking a more and more attractive proposition every day.
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Anxiety level (1-10): Sharp anxiety has been replaced by dull despair.

State of mind: I did something really, really mean yesterday – as I walked down King St in Hammersmith to pick up my laptop from the computer repair shop, deeply anxious about whether or not all my data had been destroyed by the virus, I was accosted by a strapping young man with a charming smile and a cocky air, who was wearing a jacket which indicated he was fund-raising for the British Red Cross. These days it is almost impossible to walk down King St without being approached like this; charity fund raisers hang around there in packs, every day. This boy made the fatal error of greeting me by saying something about me needing to smile. I looked him in the eye and snarled ‘I’ve got cancer. I’m probably going to die soon. Why don’t you go and tell someone else to smile?’ So I think it’s fair to say my current state of mind is akin to that of a wounded 18 foot crocodile in a Seriously Bad Mood – approach at your extreme peril.


Before I got cancer, I looked at mortality from the point of view of a demographer: life expectancy at birth in the UK has almost doubled over the last 100 years, making us the luckiest people who have ever lived, in health terms. We all have to die of something, and now that we’ve stopped dying young from infectious diseases, of course more of us are going to die of cancer and heart disease and all the other degenerative diseases of later life. Death is not optional, however much we might like to pretend otherwise.

And if you get cancer relatively young – well, you’re just unlucky.

During one of my early meetings with Stan the Oncologist late last October, whilst I was still wrestling with the question of whether or not to have chemo - and I did have some real choice in the matter, for reasons which will be explained in due course – he said to me, in relation to my breast cancer, ‘I expect you’re thinking ‘Why me?’, aren’t you?’

I looked at him blankly ‘No, not at all. My husband died of leukaemia when he was 32. That was 20 years ago, and I’ve had a whole adult life since then. I’m lucky. He never even got to be middle-aged. Why not me?’

I was, however, somewhat surprised to develop breast cancer, as there is none in my family and all my immediate maternal forebears have lived into their late 80s or early 90s, fully compos mentis and with remarkably little in the way of physical debility; given that there is a strong genetic component in longevity I wasn’t at all worried about getting cancer, of any sort.

Immediately after my diagnosis, therefore, I started researching breast cancer, and what causes it, and was horrified to realise that I had, unknowingly, been in two high risk categories: I have not had any children and, despite being in my fifties, have not yet started the menopause. Both of these characteristics considerably increase your chance of getting breast cancer, because they both mean that in middle age you still have unusually high levels of the female hormone oestrogen, which is strongly linked to breast cancer. I used to be rather proud of the fact that my body was still manufacturing so much oestrogen – every woman dreads getting the menopause. I had absolutely no idea that the oestrogen I was so proud of was feeding the tumour that was developing in my right breast. They score tumours for hormone sensitivity, and mine scored 7/8: it just loved oestrogen.

The way this works in quantitative terms is that overall women who have had children have a 30% lower risk than nulliparous women and the risk of breast cancer is increased by 17% for every 5-year delay in menopause. So, other things being equal, my chances of getting breast cancer were at least 50 % higher than a woman of my age who had had children, and experienced the menopause. I was still unlucky, though, because the absolute risk of getting breast cancer at my age is about 1 in 25 – my added risk factors brought it down to maybe 1 in 15 (if my maths is wrong, then shoot me – at this stage I might be quite grateful).

If you’re interested in looking at the various risk factors for breast cancer, they’re listed and explained very clearly here on the Cancer Research UK website. It’s important to remember, though, that risk factors don’t translate directly into causes - for example, the single highest risk factor for developing breast cancer is age, but age in itself doesn’t cause the cancer.

Just as it’s pointless to wail ‘why me?’ about cancer, it’s also generally pointless to search for a single factor that has ‘caused’ your cancer, given the complex aetiology of the disease: relatively few cases have a direct genetic link – more than 85% of women with breast cancer have no family history of it, and more than 85% of women who have a close relative with breast cancer will never develop the disease.

Factors to do with your reproductive history are very important, as outlined above in my own case. Essentially, the more children you have, and the more you breastfeed, the less your risk of breast cancer. It’s well-known that women in developed countries have much higher rates of breast cancer than women in less developed countries, and this is often ascribed to diet, but in fact a large part of the variation (according to Cancer Research UK, anyway) is due to the fact that women in developed countries have far fewer children, and breastfeed for much shorter periods.

Other factors thought to be important are higher level of endogenous hormones, especially oestrogen and testosterone in post-menopausal women, and exogenous hormones, in the form of oral contraceptives and Hormone Replacement Therapy; the latter gives users a 66% increased risk of breast cancer whilst they’re actually taking it, although the risk increase is temporary – it’s certainly enough to give one pause for thought about using it, though,

I remembered reading that being overweight was an important risk factor for breast cancer, but the data here are quite strange: obesity does increase breast cancer risk moderately, but only if you’re post-menopausal; before the menopause, being overweight actually reduces breast cancer risk, and if you don’t believe me, look here . I include this unexpected fact to cheer up any woman reading this who’s overweight, pre-menopausal and feeling paranoid that every piece of toast she eats is contributing to her risk of breast cancer.

The academic research on diet and breast cancer in general is equivocal, although if you read the ‘grey’ literature you will find it passionately argued by proponents of various dietary regimes that particular foodstuffs e.g. dairy products, meat, white flour and sugar are heavily implicated in many cancers. For breast cancer, there is some hard evidence that saturated fat increases risk, as does high alcohol intake, and lack of exercise, but none of these factors can be pointed to as a single cause.

For me, anyway, it doesn’t really matter now why I got the disease; the real question is whether there is anything I can do, in terms of my lifestyle, to aid the surgery, chemo, radiotherapy and Tamoxifen in preventing the cancer from returning. With all those treatments, my probability of disease-free survival for 5 years is 90%, which sounds pretty good. Conversely, however, there is a 1 in 10 chance of it coming back within 5 years, and so far the statistics have been against me, given that there was only a 1 in 15 chance of me getting it in the first place. 

So, once I’d researched how breast cancer worked, and seen how the risk factors had stacked up against me before I got it, it seemed like a very sensible next step to see what, if anything, I could add to the doctors’ work in trying to reduce the risk of a re-occurrence, without going to the extremes of a completely vegan diet, or coffee enemas. Whilst there are no guarantees there is, it turns out, quite a lot you can do, which I will write about in another post, soon. 

Thursday, December 27, 2012

My (entirely hypothetical, obvs) funeral arrangements

Day 18 
General status update 

Hair: Somewhat dishevelled due to Fear Of Brushing, but very, very shiny Maybe it’s the after-effect of all those radioactive dyes they injected me with; must check to see if it also glows in the dark.  
Nausea demon: Has finally sat down and discussed his issues, which are essentially that it is completely unfair of me to keep slagging him off in public when he is only DOING HIS JOB. If he does his job effectively, and I feel utterly vile, then it shows that the chemo is working, so why am I shooting the messenger?  
Chemo Muse: She agrees with the Nausea Demon, and points out that like him, she is ONLY HERE TO HELP, so could I possibly stop knocking her out with Lorazepam, and preventing her from doing her job effectively? Pfft – once again, I am accused of having a Bad Attitude. I am failing Cancer 101. Even the Chemo Demons hate me.
Sleep, lack of: I’m writing this at 1.22 am, and desperately trying to resist the temptation of taking another one of Satan’s Little Helpers so that I can go to sleep (n.b. this refers to the first draft of this blog post, which was started last night). 
Skin: It hurts. In some very odd places. Don’t like this AT ALL. 
Other physical side effects too gross to mention: One, so far.
Anxiety level (1-10): how many worries can one person have? Shouldn’t there be some kind of a limit? 
State of mind: Dark and snarly – you really wouldn’t want to go inside there. 
News from North Yorkshire: there is some, but it’s so Very Special, it deserves a blog post all of its own. Watch this space.
 
 I went back to the hospital this afternoon, to have my PICC line flushed; this must be done every week to ensure that it stays clear for taking blood, and pumping in the remaining five doses of chemo. I sat down in the waiting room of Clinic 8, along with just a scattering of other chemo patients (the hospital is much quieter over the holiday period), and started reading my book, but it became difficult to concentrate a few minutes later when warfare broke out inside the cheerily-named ‘Blood Room’; we all sat transfixed as what sounded like at least 3 unseen nurses began a prolonged ding-dong battle at high volume. Annoyingly, the voices being so high-pitched and the fast and furious torrent of words so difficult to follow, the only thing I could make out clearly was the sentence ‘You are A PROFESSIONAL!’ repeated several times. This went on for so long that eventually I tuned it out and started thinking about other things, primarily my funeral arrangements.
 
I went to school with a girl who had her entire wedding planned out, from the bridesmaids’ dresses, to the colour of the flowers, to the menu for the nuptial feast, by the age of 14. We lost touch after leaving school, so I never got to know whether she achieved the wedding of her dreams, or ended up having to make alternative arrangements – I like to think it was the former. 

I, on the other hand, as a life-long lover of ancient, mossy graveyards, (particularly those with extravagant funerary monuments incorporating weeping angels),
 

 and as one who did a special paper at university on the Latin inscriptions on Roman tombstones (no, really I did – it was such an obscure subject that the only relevant text-book, which I still have somewhere, was in French), have always been more partial to planning my funeral, and suitably over the top grave décor: I’ve been fantasising about having a really outrageous tomb since I was a teenager. 
 
Some of life’s rites of passage can take place more than once, but funerals are unique events: you can only have one of them, unlike weddings, of which you can have as many as you like, given easy access to divorce, money enough and time. Not to mention energy. But your funeral will only happen the once, and you are unlikely to have the opportunity to redecorate your final resting-place, once installed; it is therefore incumbent upon the person who desires a good send-off, in the style which they would prefer, to plan ahead accordingly. 
 
I am not a big fan of the actor Nicholas Cage, but was most impressed recently to hear that he has had the good sense to purchase for himself, decades ahead of the probable time of his demise, this tomb, in one of the many strange and wonderful graveyards of New Orleans:
 
 
My own ideal tomb, like that of Tiberius Julius Celsus Polemaeanus, Roman senator and governor of Asia (105-107 AD), would be a sarcophagus incorporated within a fine, stone-built memorial library; in his case, the library was at Ephesus, and has weathered well over the years -
 
 
although if we are going to be realistic, the Fo Library-Mausoleum is unlikely to be built unless I win the Euro millions lottery on a maximum rollover day. But, hey, a girl can still dream…
My preferred choice of funeral may also be a bit tricky to accomplish. R and I both come from Viking stock (or so we like to think), our respective families having originated in the north-east of England (which was pretty much over-run by Vikings back in the Dark Ages), and in each case having many family members with red-gold hair. It is hardly surprising, then, that I have always been drawn to the notion of the Viking funeral, going out, quite literally, in a blaze of glory:
 
 
I’ve always thought the Lady of Shalott’s final journey down the river would have been enlivened considerably, had Sir Lancelot only had the gumption to set her boat on fire.  
Unfortunately, current health and safety regulations mean that this particular method of corpse disposal is likely to result in unfortunate legal consequences for those left behind, although one of the many delightful Fo brothers-in-law, Nick, has bravely offered to give me a hand with such plans if funeral arrangements should become necessary. He emailed me as follows: 
Hello Caroline,  
Very sorry to hear of your cancer, but glad to see you are positive and taking it on! With reference to your idea of a Viking funeral, I wonder if we could make use of the mighty river Derwent, which flows at the bottom of our garden. I have a Pedalo type boat, and although I know having a picture of a squirrel on the bow doesn’t compare to the fierce dragon of a Viking ship, I'm sure we could get your Uncle Brian [an artist] to scary it up a bit! 
 
The Derwent flows into the river Ouse and then out to the North Sea which the Vikings did use to invade these parts. Plus, if you became a Hindu you would be covered either way. Of course we would have to be careful of the wind as we wouldn't want to set fire to anyone's garden shed as you sailed past!
 
Love, Nick
 
That is the kind of family support one really needs at a time like this; this post is dedicated to you, Nick! 
 
But do not be frightened, gentle readers, and do not be dismayed, by all this talk of funeral arrangements – I do not expect to have to put any of these plans into action in the very near future. If the cancer does come back and kill me, it is unlikely to be for some time: my oncologist assures me that with the barrage of treatments he is inflicting on me, post-surgery – 18 weeks of  chemotherapy, then 3 weeks of  radiotherapy, then 5 years of the hormonal drug Tamoxifen, which destroys oestrogen -  my prognosis for disease-free survival in 5 years’ time is about 90-91%; put another way, I have only a 1 in 10 chance of the cancer coming back within the next five years.  
On the other hand, at my particular age, with no family history of the disease, I only had a 1 in 25 chance of getting breast cancer in the first place…

And just to cheer you up even further, after extensive research I have been able to establish that this is quite definitely the best Hamster Viking Funeral video on YouTube...