Teaching myself to have faith in what will be

About now I should be anxiously waiting for that coin to flip on heads (doesn’t everyone choose heads?).  But I am not.  At least not this month.  And I can’t help wondering whether I made the right decision.

During my last visit to my liver surgeon (the spare one, tucked up my waistband where I keep spare tyres) he made a BIG thing about the number of CT scans I have had and looked at me gravely telling me I am having too many and this was DANGEROUS.  More dangerous than perhaps missing the early re-growth of a nasty I asked? To which more tssking was heard.  Go and live your life he said.  And slammed the HUGE file shut. 

“So what do you suggest? Mr Spare Liver man?”

He prescribed an alternating diet of MRI and CT scans every 6 months.  A big jump from my 3 monthly check ups since the hiccup last year.  

Meanwhile The Siamese Cat (The one and only bowel surgeon) had been busy processing my 3 monthly CT scan for May.  Whilst Mr Spare Liver was sitting in front of me expecting an answer for his preferred plan of an MRI instead in August, giving me nice things to think about in the meantime like living.   Option 1 would have left me dealing with the results (good or bad) 6 weeks before The Wedding whereas Option 2 has me dealing with the results (good or bad) one month after The Wedding.

So, lacking a coin to flip, we played rock, paper, scissors and option 2 won.  “Ah very good” said the spare liver man. “Now where are you going on your honeymoon?” 

“Greek Islands, Santorini” I said “we’re hiring a motorbike to see the island and maybe a sailing boat”.  This elicited even larger tsskkks “I haven’t saved your life twice (well technically only once Mr Spare Liver Man, The Siamese Cat & Felix the Cat did the first time) only for you to squander it on the Greek roads “.  

Which makes me think, there must be a guide somewhere to this ‘baby bear’ living.  Too much of anything, ooh that’s bad, too little, tut what a waste, but getting it just about right, now there’s a challenge.  I am currently sitting on the settee writing this having had a little too much and suffering for it.  John knows about this only too well.  He regularly rebuilds me over the weekend only to see me crumble away as we get towards the end of the week again!

So I have a plan and this involved sitting in the same waiting room expecting to collect a shiny new medic to join my ever growing menagerie; we will call this one, Mr Handsome the pain controller.  Mr Spare Liver had kindly decided that I couldn’t Live My Baby Bear Life happily if I was still in pain, so referred me to get it sorted once and for all.  Whilst waiting, I saw Felix The Cat (aka Liver Surgeon Number 1) who assumed I was there to see him and authoritatively said “follow me”… which I very nearly did before I remembered I was having my sacrum injected today, not my liver tampered with.

The pain injections into the sacrum were painful but I have had worse.  Mr Handsome insisted I went into recovery afterwards to be monitored for half an hour before he could dismiss me.  I felt a massive wobbly fraud.  Even more as I ‘walked’ into recovery and was met by the Sister who said; “Oh, you fancied a little spoiling as a patient, did you?”  Now I may be mistaken but I think of spoiling as taking me to a nice hotel, feeding me good wine and chocolates, stroking my hair and being trusted to drive nice cars.  No-where on my list does dressing in blue backless gowns and having needles stuck into parts of my body only reserved for sitting on feature as spoiling. If that’s all the same to you.

So there is much living to be getting on with.  With a wedding fast approaching to the ever patient John. 

“Where are the blue authorities?” Asked John over the phone this morning, when caught slightly off guard by the registrar asking him for documents ahead of our appointment this Monday.

I asked Google but he didn’t know.  Too busy collecting our brains to make robot cars I suspect to bother himself with such trifles.

If ever there was a need for a list it was now.  And my lack of one means we I forgot to pick up our ‘blue approvals’ from the grilling we were given a couple of months ago by the registrar.  Luckily John located them in the registry office awaiting our collection, tapping their dusty blue fingers and sighing theatrically when he picked them up.  Which means I now need to write a LONG list over the weekend as it is now less than 6 weeks and I suspect there are things which need doing.

Until then keep out of trouble and much love to all x

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How did that happen? Getting published the C List way (other ways are available!)

Some of you lovely folk have asked me recently what was it like getting published and any tips I might want to share. So for those of you who are interested, here’s how it was for me. There is a list at the bottom in true C List style.

Having a book published is an exciting but very slow process. Deadlines from publishers will be issued months or even years in advance and seemingly very little is done until the last half an hour when all hell breaks loose.

Before taking me on, my agent put me through a resilience test because she said in her experience, people who write memoirs can be quite emotionally fragile and take rejection more personally than normal.  I must have passed the test as she then proceeded to tell me to expect lots of rejections.  She did round the conversation off on a positive note though saying she liked my writing style and the concept of lists to accompany each chapter (hence the name of my book, The C List).   For her troubles I was to pay her a slice of commission and she would negotiate on my behalf and try her hardest to get me a publisher.  She believed in me which was the best feeling.

I had some wonderful rejections from Random House and Hay House who apparently loved The C List but had their quota of cancer memoirs on the books and as the market is still very fragile, publishers don’t like to take risks.  I was told the cancer memoir genre either does very well or very poorly.

And then, came the long awaited call from Watkins Publishing, part of The Osprey Group who signed me up on a bit of an advance which was even nicer; half payable of completion of the manuscript and half on publication of the book.  They agreed that in addition to the UK, the book would also be published in America, Australia and New Zealand after I supplied them with stats of the top 3 countries for bowel cancer incidence.

I was to complete the manuscript by 31 March 2012, submitting around 80,000 words.  I heard very little if anything for six months and then helpfully they dropped their edits into my email box during a particularly stressful patch at work requesting my amendments, ideally, within  a couple of weeks.

Then it was back to the waiting game.  Meanwhile I was asked to get a celebrity endorsement as apparently you lovely lot don’t like buying books unless you have them endorsed by a well known name.   I think they underestimate you, but nevertheless I tried my best to oblige.

“Could you use your publishing contacts?” I reasonably asked. “Oh no, we think it comes much better from the author” they told me authoritatively.

So how on earth do you get the attention of a ‘celebrity’? Well not very easily I can tell you from my experience. I decided it would be easier to try people affected by bowel cancer. So, I approached Chris Evans as his dad had died of bowel cancer but he didn’t reply, not to any of my charming approaches.  And then I tried Stephen Mangan as his mum had died of bowel cancer.  His agent replied saying he was interested but was overseas.  He never came back, well at least not to me.  Finally I contacted Matthew Wright as his dad died of bowel cancer.  Not only did he say yes immediately, but he invited me onto his show, The Wright Stuff (twice) and is now almost a friend – well we send each other emails regularly with kisses on and I endured the odd bit of ridicule when I voted for him in the jungle.  So I guess that counts.  But he has kept his word and has been pretty awesome.

To cut a long story short, the book finally got printed after lots of negotiations about the cover.  I didn’t like their version as I thought it was humourless and didn’t reflect the contents very well and they didn’t like my version (supplied by my talented brother along with the illustrations in the book) as they said it was in danger of looking like chick lit. So we settled on theirs with some creative encouragement from me.

The C List was finally published on 3 April in the UK and on 22 April overseas and it took so long to get into print that I even managed a relapse and had some more liver surgery during the process.  This caused a last minute flurry as I had to squeeze in a postscript (PS) as the printer was standing by tapping his feet and inhaling loudly.

I am now in the thick of the publicity phase, which if, like me you suffer from the British disease, is a bit awkward. The famous childhood saying that still sticks with me (along with “Money doesn’t grow on trees you know….”) was not to ‘blow my own trumpet’, so instead,  I like to think of pushing my book as doing my bit for bowel cancer by breaking down a few taboos.  And even more importantly, to sprinkle some hope that you can beat stage 4 bowel cancer or at least repeatedly beat it back into submission.

If you fancy buying The C List, I would of course be permanently in your debt and might pop around and do a spot of clearing up as thanks.  The publishers did a sterling job of getting it sold into the major book retailers;  Waterstones, Foyles, WHSmith etc as well as online through most outlets including Amazon, so you shouldn’t be too inconvenienced.  But just to be on the safe side, here is a link http://www.amazon.co.uk/The-C-List-Survived-Bowel-Cancer/dp/1780286791

And now for the top 13 titbits;

  1. If you are thinking about writing a book, just start. Now. No procrastinating.
  2. I was given a good tip by my writing friend Andy. He said just put the hours in. Reserve time each week to write. Don’t worry about structure or trying to finesse it, you will have plenty of time to do this later. There are so many people who have half finished books on laptops; so finishing it is the name of the game.
  3. Come up with an angle, an idea, a concept that will carry your book and differentiate it from the crowd. Mine was lists after each chapter – I even have a list of lists at the back of the book.
  4. Getting a publisher is hard. It is easier if you have an agent who will have all the contacts and at least be able to get you through the door. But getting an agent is hard too!
  5. There is a book called Writers’ & Artists’ yearbook which has some good advice and the names of all literary agents and publishers. You will need to do your research and identify agents or publishers which have experience in your chosen genre.
  6. Be prepared to do your research on your target market. I supplied figures of the number of people diagnosed with bowel cancer each year to size the market roughly and how many were living with bowel cancer in the UK. And the same for overseas. I dug up plenty of stats which convinced my publisher there is a market out there (please don’t prove me wrong).
  7. Before my publisher took me on I was invited to meet the PR team for them to decide whether I was PR-able. So it’s a good idea to come up with angles and suggestions beforehand. I must have been given the nod as the Publisher subsequently sent out the contract.
  8. Be prepared to summarise your book and yourself many times in different templates and format for the publisher’s sales teams and publicity departments.
  9. I was given an editor to work with who was wonderful and sent back my manuscript with her marked up comments for me to embellish, amend or delete. It was quite a democratic process.
  10. Although I had a proof reader as well, I was still picking up the odd inconsistency long after it was supposed to go to print! Hopefully you will kindly gloss over any I have missed.
  11. The type setter will then do his magic and page set your A4 manuscript into proper ‘book ready’ pages. I caused a bit of bother as I insisted on preceding each chapter with an illustration from my brother, followed by a formatted list. But I think it was worth it.
  12. My press pack was sent out with a picture of me, a bit of a biog, background on the book and bowel cancer as well as some example interview and feature ideas.
  13. I am paid a small % in royalties on every sale but it’s very complicated and varies a lot and I will need to sell tens of thousands before I can buy that lovely little Alfa Romeo Spider!

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Thank you for reading. And good luck if you are writing.  X

 

 

 

 

 

 

Here’s to my mum

Ever since I was a little girl and my mum always protested “We don’t celebrate mother’s day”…I thought it was one of those things we didn’t do in our family, like owning a TV, or buying a car that wasn’t British. Or paying for food in restaurants without having a full blown fight over who was paying (My Dad of course, and still to this day).

But I now realise it was like so many things to do with my Mum.  She just doesn’t want to stand out.  To accept compliments.  To make a fuss or to have ANYONE do ANYTHING for her.  And yet she spends every waking moment thinking about and doing things for others.

Quite simply, my mum is beyond comparison.  And I have always known this, since I was little and realised she wasn’t like everyone else’s mum and all my friends were jealous of me.  I have tried not to take her for granted, but heavens to betsy, it is a daily battle!  When I come home from work and find she has shopped, cooked, gardened, walked the dog, cleaned and been a full time mum to my children.  And STILL has energy to counsel me with wise mum words.  And stuff money in my purse!  I know, I am embarrassed writing this.

And she will be embarrassed reading this and protesting again that it is all rubbish.  And having a good cry.  But it’s not.  And so, Mum for once zip it and don’t try to turn it back on me.

It’s your day and here’s to you Mum.  Happy Mother’s day.

Much love x

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The C List and other stories

“When are you going to get your writing mojo back?”  I was asked from time to time as moss gathered on the inside of my blog.

The truth is after Kate’s death, every time I tried to write it just felt contrived and to be perfectly honest jabbering on about the pressures of life just didn’t seem a fitting follow up post. So I kept schtum and got on with the busy business of living.  As Barbara on twitter beautifully summed it up; “the first wish of those dying untimely is to live their dreams for them”.

So I have been doing lots of dreaming and as Kate got so much pleasure from working, I tried to do quite a lot of that too.  At times so much working that I was beginning to leak yin all over my new found yang.

But with 2 clear scans since we last spoke, I am in a good place again and I have more news.

The book that I cranked out during chemo, called The C List, got picked up by a publisher and is being released finally on the 3rd of April in the UK and the 22nd in America.  And as Kate helped me so much with this book from the first edit to being my daily muse, I feel it is only right and proper to announce it here now in her memory.

I have also been signed up to blog for The Huffington Post so there will be all manner of thoughts spilling out of me now I have got my writing mojo back (or my blah blah blah as my Spanish CEO prefers to call it!). Please feel free to suggest topics. No reasonable request turned down.

My publisher has fixed me up with more interviews for the book so if I apologise in advance, can you please put up with the odd shameless plug from time to time if I promise not to overdo it? And please, don’t just point the finger at me, spread your blame wide to Melinda Lord who challenged me on this very blog to write this book in the first place!  And Andy Blackford who forced me to write daily and supplied the title. And anyone else who told me I should write.  You only have yourselves to blame!  And no, I have never pretended to know where to put apostrophes so apologies for that too.

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http://www.amazon.co.uk/The-C-List-Survived-Bowel-Cancer/dp/1780286791

(you may have to copy and paste link for the mo as I need to do some stuff on Amazon to get the link working apparently)

Much love till next time x

Farewell my mate Kate

I drove past your house this morning.  Paul phoned me this evening.  He said I must have known.  I sent you kisses, I just wanted you to know I was with you.  You were already gone.

We did everything together.  The same surgeon, hospital and oncologist. From diagnosis through to chemo, operations and miraculously remission. We followed each other back into work, we held each other’s hands when we saw our new friends die and finally we were there for each other when we relapsed within 2 weeks of each other this summer. But whilst I went on to have an operation which saved my life. You did this bit on your own.  Your way.  The way you always said you wanted to do it. We talked about it lots.  I am sorry if I couldn’t accept it.

We met in High Wycombe a couple of years ago, you holding out a bunch of bluebells nervously waiting to see what I looked like.  But we needn’t have worried, we were mates from the word go.  And boy, were words your thing.  We didn’t stay long at Costa Coffee, but moved immediately across the road to The Falcon and settled at Table 8 where we drank wine from taps and talked and talked and talked. We met regularly during chemo and after when we could hold down food. This was our most favourite haunt. One day when I am ready, I will go back and raise a glass to you.

Kate, you were my inspiration.  I was in awe of your utter lack of pretension.  Your wit, wisdom, love or words, your inner steel, your kindness and generosity, your amazing spirit, and yet despite your fierce intelligence; your incredible humbleness.  You were always the first to compliment me, never admitting or accepting the praise I would try and heap back on you.  You ALWAYS knew what to say and I shall miss this more than anything.  Even more than your voice, your texts, your smile and our endless lunches.

I will remember you as the girl who threw herself back into work and life with such utter abandonment, loving every moment.  You grabbed it with both hands.  And your spirit will live on with all those you touched.  And most of all with your darling Bea and Oscar who you loved and talked about so much.  Lois and I will promise to keep an eye on Bea at school and when she is ready, will share some wonderful stories about you, her mum.

But finally I want to share a few words with everyone.  These were YOUR words and you wrote them along with many others when you read my manuscript before even the publisher got their hands on it, and as usual your insight was spot on.  Your opinion was all I needed.  It was invaluable. You gave me some priceless tips most of which I have included in my book, and I never got to tell you it is dedicated to you.  Here is a very small sample of how you felt.  I hope it comforts others as it did me;

  1. Dwell on your achievements to date, not your possible failures in future.
  2. I have produced and raised two wonderful kids, attracted some fantastic friends, secured a job with status and profile, seen lots of the world and experienced real intellectual and physical pleasure.
  3. What I can or can’t do in the future is too abstract and disarming to dwell on today (or any other).
  4. Enjoy taking a few more risks than before.  New hair styles, new social situations, new work challenges.  NOTHING is as herculean as it once felt.
  5. Take time to help repair those around you.  This journey has not just damaged me – it has left those around me shell shocked.  I spend a lot of time revisiting our conversations and trying to find ways of subtly addressing the fears that they experienced.
  6. It is ok to feel sad occasionally. Although life is fun again, it doesn’t take much to flip back into ‘rabbit in headlights’ mode.
  7. Take a strong hold on your finances! Living for the moment is expensive.  Never spend tomorrow when you can buy it today is utterly enjoyable but financially disastrous.
  8. My life expectancy may be less clear, but my wardrobe and make up collection has gone from strength to strength… as has my ‘life’s little luxuries’ budget.
  9. We have to learn to do ‘whatever it takes’.
  10. And finally; Come on we are mothers, put on your heels, some lipstick and slap on a smile.

When I am ready, I will fight on in your name.  But tonight I will mourn the loss of a great friend.  Farewell my darling. Love you.

They might as well put a zip in it!

I am getting increasingly nervous of going within sniffing distance of a hospital.  Every time I as much sneeze near one, I seem to get more holes in my body.  Or as John said this week “They might as well put a zip in it”.

So it shouldn’t be any surprise to you opening up this blog or me writing it that I was taken again to a John Radcliffe Hospital on Sunday night after John, fed up with seeing my writhe around the floor moaning and not eating his dinner, made me call 111.  Stupidly I had assumed my flu like and sickness symptoms were just that, a good old fashioned common bug.  And not some excuse for the medical profession to get their sharp saws out again.

But alas as I was feeling a bit too rosy with a high temp and very sore post op scar, I was diagnosed with a nasty little infection after repeated tests (some we will never understand were quite necessary thank you very much indeed!) and others which seemed a little over the top; x rays at 2.30am  and CT scans.   But happily this resulted in my being plugged into the hardcore antibiotics which I needed to sort out the infection. And a promise to finally get this infection under control.

After many hours on a trolley in the surgical assessment ward (also known as the ward where he who cries loudest gets the first bed), I was transferred to a nice quiet room as payment for my patience and met David Bailey.  Well I met one of the David Baileys.  My male tattooed nurse tried to get into the Guinness book of records by taking part in a stunt to get over 126 David Bailey’s together in one place.  I think he was about 3 DB’s short.  Seems an awful shame.

Then followed a procession of doctors wanting to have a gander at my scars and lumps and bumps and noticing the hamaetoma / hernia, poked it very hard until it popped.  Well I suppose it was lucky (although it didn’t appear so at the time) that this set off one of my extremely painful bowel spasms which I have been having since the liver surgery (and put down to scar tissue).  This time David Bailey was on hand to witness and he didn’t like it one bit.  He pumped me full of tramadolly and when this didn’t touch the sides, squirted morphine into my mouth before I could tell him he would regret it later when he came to clear up the bathroom or barf room as it became known.

My surgeon got wind of this and came to see me and told me in a stern voice that I was going to have an operation to fix the small bowel hernia and stop the obstruction in my bowel and it was going to be tonight.  No thank you, he really wasn’t interested to hear I was going to Cornwall on Thursday for a week’s holiday.

That night turned into the wee hours which turned into the morning.  But it went ahead finally and I am now escaping from hospital with yet more holes in an already holey tummy and yet more enforced rest.  Sorry Mum and Dad.  No lifting. No drinking. And a missed holiday.

“Didn’t dating used to be a lot easier than this?” said John wistfully as he wheeled me out of the JR into his car last night.

I’ve just knocked back my second liver tumour – hic

I am feeling a bit self conscious about writing my blog at the moment and not entirely sure what to say. Or even what use it might be to anyone other than to update you with a yes, I am alive thank you very much and currently recovering after my recent J0310.

And for those of you about to complain “they don’t sell that in my local”, it’s actually medical code for a liver tumour removal together with a chunk of liver on the side. No onions please.   It went ahead finally on the 22 July at The Churchill Hospital, where I had to do a quick mental adjustment and remove it from my “been there done that” filing space in my brain and re-file into my “here we go again” box.

To mix it up a bit this time, it was the other lobe (left one) this time that was being hacked off; also known as the pointy end of the iron/liver. I was checked into a slightly different room two doors down from my last liver resection and also changed surgeons mid consultation!  My ‘normal’ and favourite one was on call that day but said he will try to pop in for a look.  The way I used to pop in as an optional attendee in random meetings where I could sit quite comfortably in the knowledge that I would have no actions and be happily unaccountable.

The new surgeon is a bit younger, apparently more handsome, and has smaller hands.  No -where on my checklist of surgeons did this feature as a benefit, but a cursory check with twitter and the alarming number of friends I now have with liver tumours (past and present) confirmed that this was indeed considered a GOOD THING.

I realise this may not always sound a treat to those of you reading without squatters in your liver, but for those of us with, it is indeed.  My oncologist said we wouldn’t be sitting here contemplating another surgery as recently as 4 years previously.  And it that’s not enough to freeze dry your bones, only about 20% of all liver tumours are considered removable by surgery.  So to fall into this camp twice is considered a great blessing. Although newer treatments such as RFA, SIRT and cyber knife are also proving to be really successful so it is nice to know there is still something up my surgeon’s sleeve should it come back again, again.

So I guess if there is any point at all of this update, it is to say treatment options and longer term survivability is in a much better place now than ever before but you need to know your options, push for answers and don’t take no for an option. And I am, with the grace of God, living proof.

My new surgeon, after a shaky start where our respective sense of humours looked on with mutual horror; his dry as a bone and mine a nervous stream of nonsense, was outrageously awesome and totally charmed me into submission.  I didn’t even protest when he said “what are you still doing lazing about in bed, stop treating this place like your hotel!” the morning after the operation.  I even smiled with him when he laughed out loud after lifting my gown to reveal the purple patchwork quilt that used to be called my stomach. And when he denied ‘touching my bowels’ and rendering them catatonic, I found his offer of “putting some dynamite up me” strangely charming.

I will gloss over the operation and subsequent stay in hospital, other than to say it was bad enough to cash in my holiday voucher and leave for saner places before the expiry date.  But you will be delighted to know that new surgeon has offered me my operation on film.  He says “I wouldn’t watch it with your hand in the popcorn bucket if I were you, but I figured as you never stop asking me questions and telling me how to do my job, you might be interested in seeing your textbook operation?” “p.s. remind me what it is you do for a job again?” me sensing a smidgeon of sarcasm; “medical student”.

It is very difficult to know what to say that hasn’t been said before.  It is certainly more boring the second time around when you completely lose any morbid fascination you may previously had.  And the toll on your loved ones is even more heart breaking to watch.  It can feel at times relentless for everyone so there is a need to escape to some normality with even more urgency which makes raking over old ground rather pointless. So, in the meantime and until I can figure out any reason to shed any new light or stories, here are some titbits;

  1. A liver drain is called a Robinson drain, or a Mrs Robinson drain if like me you are now older than your surgeon
  2. Phlebotomists (vampires) now have to drag around a WOW or a COW.  It stands for working on wheels, or computer on wheels and holds your EPR or electronic patient record, but is very cumbersome.  So much so, that they arrived on day one and I never saw them again.
  3. The room where they put you to sleep has a tray full of “Bear huggers”.  Isn’t that nice?
  4. The only bit of the operation which is pleasant is the GA bit so make sure you ask to be counted down from 10 so you can jolly well enjoy it.  Mine took me on a very long slow trip and it was delicious
  5. Surgeons wind you up on day 2, I think it is part of the recovery programme
  6. If like me, your veins are shut for business, a nice anaesthetist can put in a central line into your neck, a bit like a temporary PICC line which makes countless injections and drips painless
  7. IV paracetamol is much more effective (don’t ask me why), than tablets but costs more so you have to stare the nurse down and growl a bit
  8. Anti sickness drug cyclizine applied as an IV when under the influence of morphine will blow your head clean off for 2 hours.  Well it did mine, and was again jolly nice.  But once I mentioned this to the nursing staff, I was banned from any more.

As ever enormous thanks and never ending admiration for my loved ones who never stop giving and supporting me.  I am now recovering under their care at home with a few boring post op complications; infection and large haematomas/hernias (one will be deleted upon further investigation next week) and await a summons to see my oncologist where I suspect we will have a conversation about the validity of 2nd line adjuvant chemo.  I sure as heck as like don’t want it..but am reliably told if it is strongly recommended I should shut up and say yes.  So we will see.   In the meantime, enjoy every minute of this wonderful summer and much love x