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

0140-IMG_4057-RACHEL-DEC-2012-EMAIL

 

 

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.

photo (5)

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

And now for some good news…

These last 14 days have seen my stomach tipped upside down, emptied of all contents, shaken vigorously, knotted multiple times with marine rope and finally today returned to its rightful position nestled between my oesophagus and my small intestine.

The big scary appointment was on Monday when I had a PET CT scan to see if there were any other cancerous hot spots lurking around.  My Doctor; the ‘normal’ one who still gives me treats like prescriptions and cervical smear tests; not the one that nukes me, or the one that cuts out bits of me; well she explained that the PET scan will check to see how the cancerous cells are behaving, how fast they are turning over, as well as any other ‘hot spots’ of cancer gobbling glucose and behaving badly that might scupper our plans for surgery.  And I would be injected with heavy metals, made to wee in a special loo and be restricted from kissing babies or pregnant women.  And then after 90 minutes when they hoped I would sit still and wait for the radiation to circulate throughout my body, I was to lie down in the PET scanner with my hands above my head in the diving position and not move a muscle for 45 minutes.  Sound good to you?  Yes, me too…

So, my incredibly wonderful and trusting man, John decided that as scary as this appointment might be, I could still up the scary stakes a bit by driving the MG to Oxford for a bit of pre-scan fun.  That’s the MG he recently bought as a project to do up, but since the cancer business returned, super fast tracked the repairs and got it insured (in my name!) taxed and on the road with its top down ready for me to drive us to The Churchill, Oxford.

“I didn’t know it went that fast” he casually remarked as it reached 110 mph and somewhat less calmly,   “RACHEL, that’s reverse!” as I tried to change ‘up’ from 3rd gear to 4th, not realising I was already in 5th on the dual carriageway.

Anyway the rest went as planned.  That’s if you can plan bumping into most of Holmer Green in a cancer centre of excellence in Oxford.  Liz (we regularly play cancer and surgeon top trumps) was in for her 3 monthly CT scan and my next door neighbour was having a spot of radiotherapy.

Now, if you have kindly read this far, I can reward you with some pretty amazing news.

The cancer, on its return visit, is definitely confined to my liver.  And, as far as my oncologist would commit himself, just in the right lobe.  Ok he won’t say for sure it’s NOT in the left lobe.  But no one can see anything yet.  Apparently once you have had cancer, you don’t hear phrases like “It’s not there” or “it’s all gone” only “We can’t see anything” or “there is no evidence”… Still it’s the best sentence I have heard for the last 14 days!

And this means, I can go and visit my liver surgeon again next week on Tuesday to discuss how he is going to get the little squatters out of my liver.  And pretty soon I hope.  So no chemo for me, thank you very much.  At least not before surgery.  We still have to discuss the validity of mopping up again afterwards.

As ever, I have been overwhelmed with all your endless kindness and good wishes.  My poor long suffering family and friends have gone through every step with me and continue to remind me why I love them so much and how lucky and blessed I am.

I will be sure to bring you more news from the liver factory next week.  In the meantime, amuse yourself with my holiday snaps! Much love x

Arriving safely!

Arriving safely!

Weapon of mass destruction

Weapon of mass destruction

Wouldn't want that job!

Wouldn’t want that job!

Lois being ball girl at The Boodles last week!

Lois being ball girl at The Boodles last week! (with her friend’s half a face!)

A wonderfully distracting lunch at Di's!

A wonderfully distracting lunch at Di’s!

This is the one post I have been dreading writing

I’ve been obsessing over it coming across as either self pitying or sentimental.  So instead I am aiming for the written equivalent of a big man hug; a sort of “I love you, but don’t go thinking I am going soft, so I am just going to give you a couple of firm pats on your back”.

I should also apologise for turning up in your inbox or twitter feed unannounced just when you were no doubt expecting the usual light hearted drivel you have come to expect from me recently on twitter and facebook.  Or in person.

So having gone round the houses enough now to make even Kirsty Allsop dizzy, here it is;

The cancer is back.  The pain in my bum didn’t turn out to be cancer.  We are still not sure what that is (no wisecracks please).  But the dull ache in my right hand side and my shoulders is.  No, the sly old fox didn’t naff off as it had promised.  It hid or waited until my life was getting pretty near perfect again and it came back.  This time, again in my Liver.

I have rehearsed this day enough times to reduce the shock impact, but I wasn’t ready for the huge sense of disappointment of having done everything I could do (with my Dad’s constant supplies of pills, wheatgrass, juice, vitamin D, acupuncture and exercise)  to stop this and yet,  here we are again facing more chemotherapy and operations.  We are back to the joy of CTs, MRIs and PET scans, endless needles, re-insertion of USB ports (portacath), and conversations with men who spend their daylight hours cutting bits out of your body.  I shudder to think what they get up to during the night…

Meanwhile life goes on.  Although right now as I am pretty sure none of my Zumba teacher’s problems and mine actually overlap, I want to avoid getting all angsty with you.. so I have taken the liberty of suggesting a few simple pointers on how we are going to deal with all this;

  • Lots of calm practical help and plenty of belly laughs please
  • No floppy necks or looks of panic, or stories of friends who had xyz flavour of cancer and died
  • No claims of obscure American yak urine cures please (but plenty of good new research is always welcome)
  • Offers of very small treats to tempt me out of my chemo cloud during the week I will come back to life
  • And most importantly of all, loads and loads of love and patience for my children, family and friends

And as I am in marketing and every marketer knows that you can only really load people with 3 messages at a time, if you take nothing else out from this post please remember this:

  1. I have complete faith this can be beaten again
  2. Hurt my children and I will hunt you down
  3. And now these three remain;  faith, hope and love, but the greatest of these is love

I am ridiculously lucky to have so much love, but I know that however nasty this treatment will be, I would still much rather go through this myself than watch the one I love suffer, so spread out your lovely arms wider than me please.

In amongst the lows, I have had and will continue to have the most incredible highs.  I have a new man, John.  He turned up totally unexpected a short while ago and is the kindest, strongest and most loving man I have ever had the pleasure of going out with.  Somehow he has taken each and every knock I have thrown his way these past couple of months, culminating with this humdinger with the best grace, humour and fortitude. And despite me warning him that my hair will go grey and possibly fall out, my normal bubbly personality will ‘go off’ 2 weeks out of every 3, our social life will be limited to days when my white blood cells look lively enough, and the steroids will kindly add some nice extra padding again…he is digging in for the duration.  I reckon we are going to do just fine.

Now I am betting you are now chomping at the bit for a plan and those of you who know me well, know this isn’t my strong point, but I will fill you in once I have more answers from my medical menagerie.

In the meantime, have a nice strong cuppa, talk about me if you like, but in normal voices please and what-ever you do, don’t panic!  I appreciate ALL your lovely messages of support, but may not be able to reply to all whilst I get my head around the deluge of information.

Much love as ever x