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...

If there's anything I can do, anything at all..

Day 16: A whole new concept in charity fund-raising emerges

General status update

Hair: it’s day 15 of the first chemo cycle, and by now people’s hair has usually begun to fall out. Mine hasn’t, so we can reasonably assume that the cold cap is working; so far, anyway. The key thing is whether it will last past FEC 2 and 3.

Nausea demon: Still operating, albeit at a reduced level, but also being rather off with me, and I don’t have the foggiest idea why.

Chemo Muse: Fuming at being temporarily disabled by the dose of Lorazepam last night. Now seems to be girding herself up for the Next Big Push.

Sleep, lack of: Sleep deficit reduced by last night’s sedative-induced deep slumber. Grogginess today entirely worth it.

Anxiety level (1-10) Ratcheting up again – the next dose of chemo is in just over a week’s time, and then this manic merry-go-round will start all over again.

State of mind: Languid – it’s one of those post-Lorazepam days..

News from North Yorkshire: the beetroot macaroons were a complete disaster, and there has been a Very Unfortunate Incident involving a 5 kilo ham; the MC is unconsolable.

 

Long, long ago, when the world was young and so was I, and there were 9 months to fill before going to university after taking the Oxbridge entrance exams, post-A levels, in what was then called ‘3rd Year Sixth’, I raised money to fund my proposed travels, in what was genuinely a ‘gap’ year, by working in the canteen at the local hospital.

This was a pig of a job: much of it was spent behind the scenes cleaning out industrial-sized cooking vats which had contained stew, or mashed potato, not a very pleasant task. But it taught me an awful lot: what it is like to stand on your feet all day, and come home too physically tired to do anything but lie down; what it is like to work at a job you hate, just for the money it will bring you, and the useful things that money will do; and what it is like to be regarded, just because you’re wearing a catering overall and hat and standing behind a counter making toast for busy doctors and medical students, as Not Very Bright, because who would be doing a job like that if they weren’t really, quite, you know, thick?

 

In the end, I didn’t do any gap-year travelling, but the money I earned was useful, and the experience gained was invaluable; I have never forgotten that, having gone to university at a time when the fees were paid by the tax-payers, my very privileged education at Oxford was partly funded by the taxes of people who never got the chance to go to university, and did jobs they hated, because they had no other choice.

In those days, students who wanted to go off travelling, in gap years or university vacations, always got jobs to fund themselves, whether in factories, bars, hospitals, shops or working on building sites. It was what you did. I was recently appalled to discover that the Zeitgeist has changed, and that many young people regard it as perfectly acceptable TO ASK OTHER PEOPLE TO PAY FOR THEIR FUN. I was alerted to this when a friend mentioned that she had bought some rather expensive tickets for a fund-raising concert organised by one of her daughter’s school-friends, Chloe, but that it was ‘all for a terribly good cause’.

‘How enterprising of her’ I said. ‘Which charity is she raising money for?’

‘Oh, she wants to go to Ecuador in her gap year.’

‘And do what?’

‘I think it might be counting butterflies, something like that – you know, it’s one of those voluntary work things, but you have to pay about a thousand pounds to go and do it for a month. It’s a fabulous place apparently, a national park, on the coast, amazing scenery, and she’ll be able to go snorkelling, and whale-watching.’

Well, well, lucky old Chloe, I thought. She gets together with her mates and plays her flute for a couple of hours, and then gets given enough of other people’s hard earned money to enable her to go and have a lovely holiday in Ecuador for a month, saving the butterflies and going snorkelling.

Call me old-fashioned, but there seemed to me to be something fundamentally wrong with this,  given that the ‘good cause’ that the money was being raised for wasn’t a charity – it was for Chloe, a highly privileged, expensively educated girl, who would now have some ‘voluntary work’ to put on her CV, and be able to hold her own when she finally got to university and started engaging in competitive ‘gap yah’ storytelling

in the Union bar. I rather doubt unskilled 18 year olds make much difference to the butterflies of Ecuador in a 4 week stint – by the time they learn enough to do anything useful, it’s time to return to Notting Hill, or go on to Phuket and develop their drug-taking skills further.

I’ve just looked on the internet to make sure that I heard right, and am not making this up, and it gets worse; there are several sites dedicated to telling teenagers planning gap years how to get other people to pay for their fun abroad, because ‘working… can be difficult’, as is helpfully explained in the paragraph below from a site called gapyear.com:

“Working long hours to save for your travels can be difficult, but there are other ways to club together the pennies for a gap year. Fundraising for your gap year is the art of getting loved ones and strangers alike to part with their cash to fund your travels or voluntary work”

Yes, working can be difficult, my children: that’s why it called work, but generally, it’s how you get money in life to do the things you want, so why not consider it as an option, eh? 

Funding gap years for teenagers with an extraordinary sense of entitlement is one thing, and real charity fund-raising is another, but I think it’s fair to say that a lot of people ask you to sponsor them, albeit for very good causes, for things they’d quite like to do anyway, whether it’s going for a 3k run dressed as Santa

trekking along the Inca Trail in the Andes…

 

Or racing to the South Pole on cross-country skis, dragging sleds.
 

 

All good stuff, for very worth-while causes: tasks which are challenging to do, and also fun, and give people a sense of achievement and accomplishment. 

I’ve got an even better idea, though, which occurred to me just the other day: why not get sponsorship for doing something you DON’T want to do, but have to do anyway? For something that no one in their right minds would ever do voluntarily unless - well, unless their life were at stake.

 

Like, for instance, my chemotherapy treatment.

 

 

SPONSOR MY CHEMO!

 I have, accordingly, set up a fundraising page on Virgin Money Giving, asking people to sponsor me to do something I really don't want to do: something I have always feared, something that is making me feel Very Bad Indeed, and that will more than likely not do me any good, anyway -

Chemo will help only 7 or 8 women out of a hundred who are my age, and have my particular type of tumour characteristics.  For the remaining 92/3 it will make no difference whatsoever, but unfortunately the current state of medical knowledge has no way of differentiating those who will benefit from those who won’t, so EVERYONE has to do it (you can refuse, of course, but not many do). I will never know whether the chemo has been of any benefit to me or not, unless the cancer returns (which would be a fairly clear indication that it hadn’t). If it doesn’t return, that doesn’t necessarily mean that the chemo worked: it might never have been going to return anyway, or might have been prevented from so doing by the other treatments I will be having later, i.e. 3 weeks of radiotherapy, and then 5 years of taking the drug Tamoxifen. There is no way of knowing.  

However, I have no real choice but to do it - the alternative treatments on offer, which I will talk about another time, are worse in terms of possible long term side effects.

So, I'm asking people to sponsor my 100 days (approx.) of chemotherapy treatment for breast cancer.

 Any money raised will go directly to The Haven, an extraordinary charity which provides, free of charge, a wide range of support and therapies to improve the wellbeing of women (and men) with, and beyond, breast cancer. Their specialist nurses and experts in nutrition, exercise, emotional support and complementary therapies provide individualised, in-depth programmes to help with the physical and emotional side effects of breast cancer treatment. The Haven receives no funding from the Government; it survives solely on charitable donations.
 

The London branch of the Haven is close to where I live, and since I was diagnosed with breast cancer at the beginning of September 2012 they have helped me more than I can say, for which I am hugely grateful. I will write about my experiences of the Haven later on in this blog, but if you’d like to know more about them now you can find it on their website at

http://www.thehaven.org.uk/

 

I have no choice but to endure chemotherapy, and whatever unpleasant physical and mental side effects it brings, without knowing whether it is actually doing me any good; it would be an enormous morale booster, however, to know that by raising some sponsorship money whilst doing it I could give something back to the Haven and, by so doing, help people who are diagnosed with breast cancer in the future. 

1 in 8 women in the UK will be diagnosed with breast cancer at some time in their lives, usually in the later years; one of those people will almost certainly be someone close to you or, if you're unlucky like me, might even be you.

When you tell people that you have cancer, they all say the same thing: ‘Please let me know if there is anything I can do..’.

Usually, there isn’t.  

But in this case, there is: making a donation to The Haven, via my fundraising page (and telling other people to read the blog – the more readers, and potential donors, the better). Then even if my chemo does turn out to be a waste of time, it will still have achieved something useful.

I know times are hard for a lot of people now, but if you enjoy reading the blog, and have got a few quid you can spare, please drop by my fund-raising page on Virgin Money Giving, and make a donation, however small.  

Believe me, if it hadn’t been for the psychological help the Haven has given me since I was diagnosed with breast cancer, I probably wouldn’t even be doing the chemo, or writing the blog: I’d have run away to Goa long since and would be sitting under a palm tree right now eating mangoes, and continuing to pretend that this simply was not happening to me, and that if I ignored it long enough, then it would just go away of its own accord.

Like cancer does…

Not.

 

My fundraising page address:
http://uk.virginmoneygiving.com/ChemoNights