For Mary x

One of the greatest gifts I had was the perfectly timed call and advice from Mary. I still remember where I was and what state I was in when she called to offer me a lifeline. It was to be the first of many, and makes the sudden realisation of their ceasing so heartbreaking.

So here’s to you Mary. I didn’t expect you to die yet. I can hear your voice so clearly now just like I can still hear Kate and Jackie, and that somehow feels like you are still here talking to me which is comforting.

With your no nonsense style and your laugh and never ending source of positivity and hope. With the way you always used my name when you spoke which was cute. With your reminders to live, have faith and trust. With your superhuman ability to take so much and keep going back for more. For the privacy in which you endured this.

I met Mary at work before either of us got cancer. Over 9 years ago. I thought she was fabulous from the start with her straight talking, no nonsense honesty.

When Mary got diagnosed with breast cancer, she did what was only natural to her, she made sure those of us who should be checking our breasts for lumps knew what one could feel like. Even then she was thinking of others.

Always working, never drawing attention to herself. Always hoping. Always believing there would be another drug available when this one stopped working. A living breathing example of courage, love and hope.

Her advice “Rachel don’t panic if they can’t cure you, just focus on the fact that they are and can treat you”. She repeated this mantra to me, to herself and no doubt to many others she has helped along the way, regularly.

And that’s why it was such a shock to hear so suddenly that the drugs had stopped working finally and that there wasn’t another option. It wasn’t supposed to be like that. So sudden.

Mary, I’ll miss our calls, our lunches, having a good gossip with you, your encouragement to drink beetroot juice, and just having you prop me up when I was having a wobble, but that’s selfish of me. I am just so sorry, the speed of your decline stopped me being able to support you at the end, like you did for me at the beginning. I know you were surrounded by love from Chris and your family and friends and I’m just glad I had the chance to tell you the difference the world felt just knowing you were in it. And how much I owed you.

One of the greatest gifts of connecting with people through cancer is that relationships are fast tracked, bypassing the usual getting to know you rituals and straight into the meaning of life and death conversations.

But the risks of connecting so deep on this level are huge.

It’s difficult to explain or protect yourself from, and I don’t know what the answer is.

But when someone you love and have shared your deepest, darkest and most beautiful moments with dies, it feels so lonely suddenly. And yet it’s completely unavoidable.

Because if protection means having missed these types of relationships with Mary, Jackie and Kate, and many more sadly, then I still wouldn’t have changed a thing.

It just hurts and it NEVER gets easier.

So do yourself a favour, in honor of Mary, if you’re a women reading this, check your breasts now please. And be happy and positive and live well for those who can’t anymore.

Good night and sleep tight Mary X

I’m at the half way point and feeling a little bit in love with 2016

What’s the word for lots of stuff happening on the same day? Well whatever it is, today was one of them!

Joe had an interview for a job, Lois had her first mock GCSE and I had my scan results. Fair to say the house had the jitters.

In one of the few light moments to offset the enveloping dread, my neighbour Peter popped his head around the door to advise me that he “was off to the Amazon at 2pm and could I look out for the house for the next 6 weeks”. Seeing I was a bit taken back by the suddenness and precision of his announcement I ventured, “Any chance of a swop? I’m off to see Dr Weaver at 2pm”.

Trying to reassure a nervy Joe, when John and I headed off to the hospital full of adrenalin and acidic acid that it would all be ok, my usual strategy of “What’s the worst that can happen?” seemed to backfire. Joe scoffed at my thoughtless attempt of consolation, but it did get me an extra long cuddle.

Arriving at the hospital I descended into a bit of a jelly and poor John who is ever the positive and strong presence seemed to catch my wobbles. Weaver was a couple of minutes late.  Not a hanging offence, but when you send a NURSE to collect us who then positions herself at the back of the room and gestures for us to take the 2 seats positioned in a circle of fear around Weaver, I was by now smelling the chemotherapy.

So the upshot of this blockbuster day is Joe got his job, Lois’s exams were ok and I am still unbelievably clear! 2 1/5 years of blissful clearness and one incredibly happy family.  I am truly blessed beyond my wildest dreams.  Weaver reminded me that my last relapse happened after 1 year so to get to 2 1/5 years and still be going strong is a very very good sign. In fact it means I am now half way towards the magical 5 year ‘cure’ target.

I don’t need any reminding of how lucky I am, 2015 was a cruel year for our BC community of friends, all of them enduring far more than I have done to try and survive. It’s a cruel disease, random and utterly heartbreaking.

So if you raise a glass to me tonight, please also raise one to those we have lost this last year and the army of people that support us all. I am so lucky to have such a wonderful support network, my dearest family and friends.  I couldn’t do it without you. Thank you. Again. X

champagne

Sleep tight Jackie

Yesterday we buried our friend and fellow, original bum bandit member. It was expected and yet horribly unexpected at the same time.

The words that still haunt me as we said our farewells were “Is this all my life amounts to? A plaque on the wall of a cancer ward?”

Jackie was rallying against death and the unfairness of it, at that moment when she described tracing her fingers along the name of the mother on the engraved plaque, despite fighting harder than anyone felt was humanly possible for so long.

I wish more than anything, that she could pop her little curly head up one last time – to watch over us all yesterday. She would have been left in no doubt what her life meant to so many. And how much it had and will continue to amount to.

Jackie was humble. She was utterly selfless and very funny.  She was a devoted mother of 6… A very private, loyal friend.  A self effacing, humble, friend with a wicked sense of humour. And yet at times so misunderstood.

Her dearest and most loyal mate, the utterly wonderful Di, was her support and advocate most days, especially this last year, and 2 more opposite people you couldn’t hope to meet.

Di is a natural story teller and carer who wears her heart on her sleeve. And asks LOTS of questions.  A warrior who wants to understand everything from the needle to the thread!  And she would gather Jackie, Liz and myself together regularly over the years to support us with legendary lunches that finished at 3am, no subject too taboo! We loved them.  And we loved each other.

We would all be there waiting for Jackie after yet another of her interminable ambiguous medical meetings trying to understand what on earth was going on with our friend’s insides. But Jackie couldn’t be less interested – she would hold our attention rapturously at the start and then lose interest herself a sentence of two in and deviate down multiple dead ends until always ending up talking about her menagerie of animals. Leaving us scratching our heads once more and pouring another glass of prosecco washed down with olives, cheese and the famous salmon mouse.  This continued for many years, which is why I say it was both expected and unexpected.

Despite their unlikely pairing, they were wonderful friends and as we left Di’s house for the funeral I couldn’t help but wonder where that impish looking women, trying to balance on the bar stools propped up against the breakfast bar with a drink in her hand was.

Her bonny radiance was deceiving. Even after the 2nd line chemo had finished and her hair grew back ginger and curly, and she in her words, looked like Mrs Brown’s boys…she would always look well. Here’s a picture of her before the cancer got her – she was really beautiful.

Beautiful Jackie

Jack also wasn’t in the least like Liz and I. She trusted authority and didn’t like to be pushy.  She couldn’t get her head around our approach which could have resulted in either of our medics taking out injunctions on us at any stage.  “I expect they’ll get back to me, I don’t want to push them” was her constant reply to our ever more urgent questioning.

She was also a contradiction. She would accept all manner of excuses, put offs, sidelining.  Until one day.  And then she wouldn’t.  And you have never seen anything rev up so quickly from mild mannered sorry to bother you to fiery Irish terrier faster than Jackie.

Would it have made any difference if she had fired up earlier? We may never know.

But all I know is when she should have been relaxing into the caring arms of the NHS, she was trying to make sense of a broken system. To try and find which drugs she could be on.  To figure out what other treatments might help her when all other hope had been removed.  To sort through endless pages on the internet to figure out fact from fiction.  To stay awake at nights worrying about how she could afford it.  And to chase. And chase. And chase.  That is what hurts the most of all.

But we can’t do much about that now, so instead this is how I’ll remember her;

  1. Her perfectly round hairless head after chemo
  2. Never knowing the names of drugs or the exact location of her cancer
  3. Always diverting any story of her health back to her animals
  4. Taking against someone for some reason and NOTHING could persuade her otherwise
  5. Always, always wearing a smile, a slightly nervous giggly smile
  6. Always being awkward about being kissed or cuddled
  7. So gentle and always apologising
  8. Never wanting to put anyone out – standing in the lane waiting to be picked up rather than have us go to all the trouble of walking up her drive and ringing her bell!
  9. A sharp and funny observer of character

And finally as I sign off, there have been some wonderfully dedicated medics helping Jackie, but some less so. So in the hope it might make some difference to someone, here is what I would like to say;

  • Don’t assume that because someone doesn’t want to educate themselves about their illness, they don’t care. And that you should care less (I know this doesn’t apply to most medics)
  • Don’t assume that lack of questions means lack of interest
  • Don’t treat denial so harshly – there must be other ways to break news more compassionately

So here’s to you Jackie. Your life mattered very much. Thank you for sharing it with us. Sleep tight.

 

 

See Naples and die!

Hello again

I’ve been planning this trip for a while. 4 years in fact since I wrote my happiness list about driving an Alfa Romeo Spider, wind blowing through my hair, meandering down the Amalfi coast with the stereo loudly playing ‘On days like this’ by Matt Monroe.

So with teenagers in tow, I convinced John to leave his favoured orderly Netherlands for the wonderously chaotic southern Italy. On a promise of relaxation and discovery. What could possibly go wrong?

It wasn’t long before we realised that we were going to spend our entire holiday getting hopelessly lost.

We hired a car and bought along our own sat nav already programmed with our location in Italy. But the first signs of the sat nav not playing by the rules we had become accustomed to, was it introducing us to the concept of quantum mechanics by telling us our hotel on the Sorrento Peninsula, which we were in fact residing in at that very minute, was instead 1.6 miles away.

When we failed to appreciate its immense intellectual dexterity, things took a more sinister turn.   It wasn’t long before it plotted its first attempt to do away with us by trying to convince us to drive straight into a bricked up tunnel.

Disgruntled and mistrustful of its motives, we left it behind for our next trip. Not yet accustomed to the baffling lack of any rules of any description, we decided to play it safe and drive to Sorrento, a 20 minute amble away. We could see it high up on the cliffs around the corner and figured it wouldn’t be too much of a stretch on our first proper day.

It was 2 hours later when we were high up in the most remote of mountains that we realised the sign posts were insignificant at best, devious at worse. It was as if the mayor of Naples had personally instructed everyone to remove all signs or helpful navigational tips and requested instead for a blizzard of signs on every road side directing the unsuspecting tourists to hotel rooms one might pay by the hour for, dead end roads less than the width of your car where you may lose your possessions along with the side of your car, and pizza restaurants where you will sit rocking back and forth until you have the courage to bribe someone to lead you out of the village.

It was to be another 90 minutes before we shuddered to a grateful halt, not in Sorrento as we had innocently planned, but in Amalfi, some 40 km up the coast. It was such a beautiful and rewarding sight and so thankful were we to be alive that we immediately paid enormous sums of money for a local to look after our car, squeezed into a space so tight, I would have thought twice about laying a skateboard down to rest.  And so, unprepared for our unexpected excursion, we wandered the beautiful streets in search of a wet shave for John, Italian hair gel for Joe and a t-shirt with alien writing for Lois.

one wet shave in Amalfi

one wet shave in Amalfi

Joe looking cool

Joe looking cool

Lois looking cool

Lois looking cool

Calculating it would take 90 minutes to drive back along the famous and spectacular Amalfi coast, we liberated our car with Joseph asking to handle the transaction, folding the notes in his hand and passing them to the ‘local’ by means of a firm handshake. All without a word passing between them.

On leaving the town, we concluded that surely the drivers were just trying to frighten us of the road and had no intention of actually hitting us. But this myth was quickly dispelled after we received our first black stain down the side of our white Alfa Romeo hire car. People are so used to being hit at speed by passing motorists that they hardly notice it anymore. And besides there was never any intention of anyone stopping to exchange details. Not one car has a wheel arch, bumper or side panel unaltered.

Visibly shaken, John stopped to try and let an old lady with a stick cross the main road on what passed for a zebra crossing. So shocked was she that someone had slowed to a halt, that she remained routed to the ground eyeing us suspiciously and refusing to move. Her suspicions were rewarded when what now appeared to be a riot broke out behind us with every conceivable expletive and hand gesture set to a chorus of horns.

Southern Italy must be the worst place in the world to be a highway road marker. It must feature in the top 10 of dangerous occupations.

No sooner had we moved into second gear 5 miles out of the village when a falling tree on a blind bend, with a sheer drop to the rocks below caused new levels of chaos. This involved another long stop whilst the fire brigade accompanied by most of the locals who considered it high drama to watch a stationary row of cars full of canoodling Italians making use of their idle hands for a while, tried to move it. It didn’t stop over a dozen cars trying to overtake the now 2 mile traffic jam, on the wrong side, of course, and a cigarette paper away from the edge of the cliff.

Imagine for a moment, our panic when driving along with every sense on high alert, it suddenly dawns on you that at least 4 rows of cars and scooters with legs a swinging, on a very slinky 2 way road are bearing down on you around a blind bend on a mountain top at a speed they have no intention of adjusting.

8 hours later, and not the 20 minutes we had planned, we finally arrived in Sorrento. There appeared to be no way out without breaking at least 10 international highway rules. Now all that stood between us and a stiff drink was a 1 mile tunnel that we were advised NOT to enter. Needless to say we didn’t locate the turnoff before and entered the smog of the tunnel before being spat out on the brow of a hill, the wrong side of our hotel. The only solution, unthinkable some 12 hours before in good old Blighty, was to do a 3 point turn on this main road to avoid further danger of us ending up on the road to Milan!

Surely Pompeii would be an improvement for our next excursion. The ruins were spectacularly impressive. Less impressive however was the lack of any signs to help you find the ruins and streets that looked like they had been patrolled by a dumper truck driven by someone with attention deficit disorder on a revenge mission. There was devastation on every corner including the run down hotels, shops, garages and houses. Most of them built within an emergency stopping (Italian of course) distance from the heritage site.

Looking after their heritage is also not Italy’s strong suit. So if you were to glance fleetingly to your left to check the road signs for pizza delivery options, you would miss Pompeii completely. And don’t every hope to find it again.

Onwards to Capri. Very beautiful but don’t expect to arrive before the time you were hoping to leave. And expect to witness the locals involved in a full blown riot again. Whether this was some sort of protest or merely part of the daily routine of buying a ticket, I couldn’t tell. It seems even the simplest act of buying a cup of coffee results in a complicated protracted transaction in Italy. Entire days are lost just waiting for your drink to arrive. And whilst queuing can hardly be classed as a national pastime, every simple transaction resulted in having to wait in what we assumed was a queue but made by Italy so requiring at the very least a pickaxe to hold your place.

If you are ever tempted to visit the blue grotto in Capri, you will find you need to repeat the boat buying transaction many times involving multiple boats and excuses to part with more money, time and handfuls of hair. When you are finally transported the 10 minutes down the coast you will be expected to wait an hour with no communication whilst witnessing the ensuing scenes of chaos around you as boats arrive and barge in from all directions. At some stage driven by goodness knows what system, a rowing boat will arrive to row 4 people at a time 20 strokes into the blue grotto and relieve you of another 48 Euros for the pleasure. We were also told we would need to hand over bribes to let us swim in the blue grotto. 10 Euros should do it. This was agreed but on return to our boat 2 minutes later, we were told we needed to pay an additional 40 Euros as we had ‘an extra long swim’. I have had sneezes that last longer.

Still, you have to admire our pluck or groan at our stupidity, when on the final day we took our sat nav for another trip out to try and climb Vesuvius. Our hotel was bang opposite it across the bay of Naples and it does rather stand out so we were quietly confident.

Our view of Vesuvius from the bedroom

Our view of Vesuvius from the bedroom

A warning sign should have been the sat nav refusing to recognise Vesuvius. We tried various options; finally settling for Somma Vesuvius which we were told is the same thing. Well the same thing if you were expecting Vesuvius to be a forsaken patch of gravel down a dirty back street nestling between 2 dead ends.

John by now had given up on the sat nav and the lack of any signs for Vesuvius despite us circling it from every conceivable direction. My requests to help ask locals to direct us, inexplicably in French rather than Italian, didn’t improve the situation. So there was nothing left but to follow a car he liked the look of carrying a roof box. The disappointment was palpable when the driver unaware we had pinned our hopes on him taking us up Vesuvius, pulled up outside a Mexican restaurant.

The owner looked shocked when we got out of our car. All eyes on the lonely side street were on us. ‘At least let’s use the loo’ said John hopefully. This necessitated the Mexican owner turning on the electrics and after much international hand signalling and a free expresso, we had our sat nav reprogrammed by the owner, thrilled that someone had found him, presumably from advertising on a signpost, and stuffed our hands full of business cards. Apparently Ecolano was what was required.

Getting closer....

Getting closer….

By the time we eventually found the road up Vesuvius some 3 hours after our departure (and not the 40 minutes promised by the sat nav), AND after being overtaken up the mountain by a 5 year driving perched on his father’s knee, it was closed. It had flirted with us all week, at one point appearing to have been taken away during the night, and seemed shocked that we had bothered to turn up at all. As it promptly pulled the cloud down over its eyes, it pointed us in the direction of some of its vomit which it charged us handsomely for.   The lady in the shop saying “yes 40 Euros for this piece of rock , eez very special you see. It can stand up this way. And if you like, you can also lay it down this way”. Amazingly compliant with the laws of gravity. Astonishing stuff.

The rain by now was scuppering our plans to swim in the sea so we tried the hotel’s health club instead. The receptionist eyed us suspiciously and tapped to a sign behind his head saying ‘no minors’ and pointed accusingly at my 15 and 17 year old children. ‘But they are hardly minors. And there is no one else in here, so you can’t claim we are disturbing anyone’ I pleaded. He shook his head again slowly and said ‘ah, but what can I do, it’s the law you see’. And pointed again to the sign. ‘The same law that… ‘ I started but was unable to finish as my son dragged me out before concrete shoes were ordered for me.

Leaving for the Airport the next day, we decided we would leave nothing to chance. So we left armed with printed maps, instructions, our programmed sat nav and bribery money. And a good half a day to spare.

Some of the very helpful navigational signage

Some of the very helpful navigational signage

It was surprisingly easy, despite the only sign for Naples airport first materialising on the exit road for the airport. But it was a sign nonetheless.

The return of the car hire was less smooth. Instructed to bring her back full, we filled up at the petrol station on the same road and returned relieved with a full tank and the car still looking car shaped. This was met with further head shaking and a ‘no sorry, your tank is only 7/8ths full. We will have to charge you 40 Euros to service it and whatever else it costs us on top to fill it up’. Beg pardon? ‘Or if you prefer, you could take it out again and fill it up’. So, 3 Euros later with the petrol now dripping out the tank, it is again returned to be met triumphantly with a ‘see I told you it wasn’t full!’

I am a sucker for all sorts of pandemonium. So part of me, the part that was on holiday, finds this way of life oddly attractive. But I must be getting old because even I was often open mouthed with the lack of any normal rules or conventions which I now realise keep our little island of calm running smoothly. Such as queuing, paying any sort of taxes, using computers rather than endless piles of paper, any form of signage, schedules which stick to some sort of published time, working in any capacity without the need for some sort of bribe etc.etc.

So scusa if I take a little time to re-adjust. And engage in passionate arguments about trivialities. Or drive through the village with absolutely no regard for what is in front of me, gesticulating widely whilst on the phone and looking in the opposite direction. Or keep your change without registering the slightest guilt. Or turn up for appointments a day late, if at all, displaying nothing more than a bejewelled gown, 10 inch heels and an insolent shrug.

La prego di accettare le mie scuse.

 

 

 

 

 

 

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.