Snakes and ladders

2 years ago todayish sitting in front of my oncologist (the Cheshire cat) I remember with sickening clarity the graph he drew of my likely relapse probabilities over the next 5 years before I could even begin to think of myself as being cured.  John thinks my obsession with knowing EVERYTHING is KERAZZY and he might have a valid point.  But if there is anything I can get out of the way with a spot of pre worrying or pre grieving than I feel slightly more prepared to put back on my fighting face and not scare my children any more than they already have been.  It saves me time processing stuff later on. I am sure the women are nodding enthusiastically at this point.

Anyway this graph business (where the Y axis represented the statistical probability and the x axis represented the years 1-5), looked a little like a swallow dive for the first two years at the top of the board followed by steep dive, the sort where you might be about to belly flop.  For the first 2 years. But instead of belly flopping you sort of hover above the length of the pool for the next 3 years gradually dropping (hopefully elegantly) into the water and of course not going under, that’s the trick.

So the game I soon realised was to get to the 2 year mark without falling down any more snakes. (Sorry we are not sticking to the same analogies, keep up please, you haven’t had wine yet so you have no excuse!)  I rolled this dice 4 years ago and after climbing a couple of ladders, took a tumble down a nasty little serpent and ended up right back to the start again.  Clock reset.  Year 2013.

But now fast forward 2 years and we are in 2015 and I have just passed the 2 year mark with a clear MRI scan on the chopped liver.  A far cry away from the 7% survival statistics I accidently on purpose saw on the internet of scary things some years ago. And everything has suddenly shifted for me.  I really think I can do this.  But it is not me doing this.  It is no more ‘me’ doing this than it is me doing the lovely weather we are having right now.

Every view from the top of the ladder is tempered with a low from those of my friends who are slipping down the snakes.  And nothing I am doing is any different.  That is the random and utterly cruel nature of this disease.  But I do know that I am not doing this alone and any strength I have strung together over the last few years has been the product of my faith, my family and my friends. And long may it continue.

Life for me today is very beautiful and I am eternally thankful x

Happy days

Happy days

It’s all about friendships

 

It’s been a heady time these last few years and not too shy on the drama front.  But as life has settled into something approaching normality, it’s been more difficult than ever motivating myself to break the blog silence. But if you will bear with me as I remember how to write, I will start with a story about friendships and the passage of time.

2 years ago this week was the rarest set of circumstances.

I had just found out my beautiful mate, Kate had relapsed and was desperately ill again.

I had just started going out with the man who was to become my gorgeous husband.

I was sitting looking overlooking the Mediterranean with a generous G&T on my annual holiday with my best mate Jen and our children and pondering the above.

And I was also, unbeknown to anyone including myself, relapsing again.

But for now Jen and I were sitting at our G&T evening table before dinner, when… a gentleman came over and said, in slightly broken English, “May I put my glass on your table?” to which I think I replied, “Well that takes the biscuit as a chat up line!”

And there began our friendship with Reinhold and his wife Martina, with Reiny, as he is known, desperate to learn the idiosyncrasies of the English language and presuming Jen and I looked the best culprits to teach him.

Fast forward 2 years and Jenny has just returned from a long weekend in Donzdorf with Reiny and Martina having been a much better friend than I, keeping up with their regular emails, skypes and personalised boxes of presents including rather uniquely once, a carnival in a box complete with noses and piles of confetti…  Whereas my lazier part of the bargain was to teach Reiny English through my blog to which I unreservedly apologise for playing fast and loose with apostrophes and analogies and causing anyone with the slightest need to follow a linear progression, whip lash.

If you don’t believe me, check out this review of my book from the international audience on Amazon (especially the comment about perplexing verb tense and occasional lack of linearity).  Feel a bit boasty about this but it did follow a 3 star review so that makes me feel a bit better!

Everyone should read this,March 26, 2015

By

This review is from: The C List: Chemotherapy, Clinics and Cupcakes . . . How I Survived Colon Cancer (Kindle Edition)
This is a fast, easy read that manages to stay extremely upbeat even when the author is describing some pretty grim stuff. I highly recommend it to everyone, because sooner or later we will all know someone who faces this or face it ourselves and she offers a lot of wisdom and is downright funny, in a British-humor way. (She points out the rather troubling question on a pre-op form “Is there anything else that the surgeon or anesthesiologist should know?”) It’s hard to convey how charming and chatty the author is. By the end, you feel that she is a friend, or you wish she was, and that she has given the world a beautiful gift with this book. I’m so glad I picked it up just on a whim at the library one day. (Note: The book was based on a blog and that accounts for some odd transitions and perplexing verb tenses. That occasional lack of linearity may have been part of what bothered the person who wrote the 3-star review. But, if you take this for what it is, you will find it wonderful. I believe it would be an appropriate gift for someone who you are close to who has cancer, especially if part of the gift is that you have already read it yourself.)

But as ever, I digress.

As Jenny (the very good but eccentric friend ) left Germany feeling discombobulated and rearranging it’s autobahns back into nice straight lines again, Reiny pressed a big pile of English notes into her hands to give to the charity of my choice, which of course is Bowel Cancer UK.

And so I want to send a massive thank you to two people who have touched me with their compassion and humanity.   Not to mention their patience and loyalty. That’s you Reiny & Martina in case you wondered.

Last weekend was also a happy bittersweet occasion and testament to the healing power of friendships.  Kate’s daughter Bea and my daughter Lois have become friends through some of the toughest experiences imaginable.  And last weekend they gave back their time and energies for another charity, the Helen & Douglas House in the rainbow run.  I couldn’t be more proud of them.

bluedog

 

I have been so lucky to be surrounded by people like this.  People who hold up a mirror of humanity to the World.  And so as I sit here in my little home office looking out onto the street (or curtain twitching as my cousin called it) I can’t quite believe how lucky I am to have meet and known, properly known and terribly missed, my mate Kate and now her daughter Bea, my long serving loving dotty mate Jen and our new friends Reiny & Martina and of course my darling John. Amongst many others, too numerous to mention here.  Now go and have yourselves a nice weekend and I promise to write soon when mega scan (2 years can you believe) is over and done in a month or so.

Much love x

 

PTSD and cancer

“I think the hardest part of cancer treatment is at the end – when everyone assumes you’re “cured” and you no longer need their help. You’re in your weakest, most devastated state, plus you no longer have the mission you had when you began this journey; to kill the cancer. The cancer is toast, but so are you, and now, like a soldier at the end of the war, you need help putting yourself back together, only everyone has gone home since they assume the war has been won” – Anonymous.

Before you feel affronted I am not referring to you, my friends or family who have been more loyal than even my dog when I am eating my third sixth meal of the day. And I want to say upfront I don’t think I suffered badly from PTSD; stress at work yes, but that’s a whole different story for another day.

But reading that quote made me feel sad. Too many people feel like this. So I wanted to try and understand why.

Traumatic stress is getting a lot of attention and research at the moment. In other words, understanding why some people who cope well at the time of a traumatic experience, become unwell at a later date. It might explain why this quote had such an impact with my group of friends.

Our brains are wired to protect us in a life threatening situation but this can mean some of our memories get the supersize treatment whilst other vital information gets lost down the inside of our skull. That’s got to have a lasting effect.

This is how I have understood and interpreted what happens in our brains. There are 3 main things which happen when experiencing any kind of trauma (with thanks to Time magazine and apologies to any neuroscientists for dipping in and out of the brain like a sherbet dib dab);

1. The prefrontal cortex stage – the CEO of your brain if you wish. When it is working well it does the job of focusing attention well on areas we choose, being rational and stopping ourselves from being too impulsive, like telling the Finance Director what we really think of them, for example. You will be using this prefrontal cortex right now to read this article. But when we are under threat, this part of our brain goes AWOL. It get’s shut down by all those stress chemicals. Yep, it goes to the pub and as a result we find it more difficult to make sense of the world or even remember or recall things in a rational way.

2. Then at some point, FEAR kicks in. Faced with a slurred prefrontal cortex he buddies up with the fear circuitry or to be precise the amygdala. For reference, let’s call this young pretender, the inexperienced but super keen graduate. And it will highjack your attention and decide where you should focus thank you very much. And these are not always useful things. It might be crazy details like in my case the surgical instruments to put me to sleep or the paper knickers. But whatever your ‘graduate’ decides you need to focus on gets hard wired into your memory as your brain is now in super efficient coding state during this period.

3. This young graduate employee, aka the fear circuitry then mucks around with another important area of your brain, the hippocampus. I told you he was inexperienced. This makes your hippocampus behave like an employee just before he is put on a PIP (performance improvement plan). You might prefer to call him a sales man, I couldn’t possibly comment. But when the wrong button is pressed in this hippocampus, your brain will have difficulty encoding memory and remembering contextual information. For example like what was going on during this trauma. And to make matters worse, it gets the time sequencing out of order. So whatever you do, don’t expect an accurate account afterwards.

So what does all this mean? How long lasting is it? What triggers it off again? And what do we do about it?

Well I am not qualified to answer any of those biggies, but the current thinking seems to be a combination of CBT, Pyschotherapy, medications and support groups. But at the very least, it does explain why it is so difficult to scrub away those traumatic ‘supersized’ memories and why we might not be as coherent about facts, dates and figures as we used to be.

So assuming you can put yourself back together again physically and mentally, the next challenge is coming up with a new mission.

Till next time x

P.S. just had another clear scan, 18 months and counting. Thank you as ever for your patience, love and support.

Good news travels slowly

It’s taken me a while to commit to putting fingers to keyboard and update my last cliff hanger so apologies for keeping you waiting. But you can now all say “Told you so” and go and have a nice cup of green tea as a celebration.

My mate Andy tells me our brains are programed to pay more attention to bad news than good. It’s a survival thing. So on that basis, this little update is now floating around in the ether and will soon disappear down the back of the internet.

But my incredible news is the MRI scan I had a few weeks ago on the chopped liver is still unremarkable, NED or just plain “we still can’t see any cancer and believe me we looked long and hard”. A funny word or sentence to describe something so miraculous.

I have struggled to write this because for the life of me I don’t want to come across as smug or preachy. I am more than aware of the extraordinary miracle that my life has become which I am also more than aware, I can take no credit for. I know I have been inexplicably lucky, but I can’t understand that any more than I can explain those who haven’t been or why bad things happen to good people.

It’s been 3 years since my cells starting behaving badly and many dear friends have died and still many more are terminal. Of course cancer is random, unfair and ugly. But what makes it even sadder is the inequality in treatment and care which robs people of hope. It is why I am showing my support to Bowel Cancer UK’s Time for Guts campaign, for highlighting the fact that survival rates and experiences are still unnecessarily very poor for people with advanced bowel cancer. And a major reason for this is down to being offered liver surgery and the right drugs based on clinical need, not postcode. It is inhumane that survival in the 21st century can still be down to luck, location, money or how hard you are willing to fight the system. Please take time to read this and donate, make a fuss and fundraise for those who can’t.

We all need hope, something to hang on to when we get a little close to the edge. Life is unimaginably awful without it.

So that is why I am committed to keep writing or banging on about it, even when I am struggling to find the right words. I didn’t think or could see any hope when I first typed into the Beating Bowel Cancer forum “Is there anyone out there cured of stage 4 bowel cancer?” But fast forward 3 years and I can answer. It is possible, with the best treatment, even with recurrent stage 4 bowel cancer to be in remission. In my case for a record breaking year and counting. Maybe, hopefully someone, somewhere reading this will perk up a little.

And whilst I am getting all my good news out in one blog, hold on to your hats; I got married last month. To John, the man I met 6 weeks before I relapsed last July. Turned out there was one good man left who wanted to take a chance on a dodgy girl over 40 with a screwed up immune system.

Finally, if you are still with me, I just want to finish with saying thank you again. To God for giving me comfort when I was making all sorts of bargains lying down shivering in the MRI scanner. And to everyone else in my life who has to up with my constant paranoia.

As a treat, here is a little passage from “Desiderata” which Kate’s (and now my) friend, Dati read to me when I needing some of that lifting up one day. It worked for me, hope it will for you. x

Desiderata – by max ehrmann

Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with imaginings. Many fears are born of fatigue and loneliness.

Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should.

Therefore be at peace with God, whatever you conceive Him to be, and whatever your labors and aspirations, in the noisy confusion of life, keep peace in your soul.

With all its sham, drudgery and broken dreams, it is still a beautiful world.

Be cheerful. Strive to be happy.

Max Ehrmann c.1920

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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