About bananagiraffes

I am a 2 time survivor of stage 4 bowel cancer, mum of 2 teenagers and currently in remission again, making sense of the world and this wonderful precious life! Author of The C List.

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.

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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 me 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 lovely Liver 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

I’m more determined than ever, coming to get you bowel cancer!

 

“Sometimes, life hands you a chance.  It hands you something amazing, you almost think it’s a dream, but no matter how much you pinch yourself, you don’t wake up.  It’s moments like those that make life really worth living, because no matter how hard times get, there are always those miracle moments that lift you back on your feet”.  (unknown author)

I had no idea earlier yesterday (let alone last year) that I would be having one of those moments in the form of a big bear hug from Matthew Wright after he asked me along to meet him and Ben Richards on Channel 5’s The Wright Stuff yesterday morning!

photo

 

Err why you might ask?  Well Matthew has been a great support and generously wrote some lovely words about the book I have just finished which is getting published next year about bowel cancer. It’s currently with the publisher undergoing some enthusiastic editing, and no doubt will be the subject of a future blog, so park that thought for a while!

Matthew’s Dad died of bowel cancer after yet another misdiagnosis and he has turned his considerable charm and energy to do whatever he can to raise awareness of bowel cancer, supporting The Bobby Moore Fund for Cancer Research UK.  Yesterday’s show was a towering example and included so many references to bowel cancer you could have been mistaken for thinking you were watching a public awareness film; albeit a much more entertaining and attractive version!

The special guest on the panel was Ben Richards; the Actor who has starred in Footballers Wives, Holby City, The Bill and currently Dolly Parton’s musical 9 to 5. A recent bowel cancer survivor and now the Ambassador of Bowel Cancer UK, he is doing so much to turn his experiences into something positive as well. You could hear the sounds of stereotypes debunking noisily all over the studio floor when Ben told his story. “But you look so good, so YOUNG, so fit, so handsome” (ok I added the last one in, but I know you will agree).

Sadly those of us who huddle together for warmth and comfort on twitter know only too well that Ben Richards is not too young or an isolated case.  He has been very active in the Never2Young campaign which I was also a part of when Bowel Cancer UK launched it in March to highlight that this disease is growing in the under 50’s. http://www.bowelcanceruk.org.uk/never-too-young/ (You may mock, but the ONLY area where I am still considered young is bowel cancer.. and I am milking it for all I am worth.  A girl women’s got to fish for compliments where she can these days).

Anyway the serious point is it is NOT rare and the stats and late diagnosis are truly shocking and it makes me angry to my core. I could fill a page on stats, but nothing will hit you in the gut as much as hearing the stories of our dear friends; these 3 beautiful girls.  They have all died of bowel cancer since the launch of the campaign;

Laura (@paperdollybird) died just 4 weeks after her wedding at the age of 31 in March, after being told nearly two years previously that she was too young for bowel cancer

Hannah (@sitemanagergal) died 12 days ago at the age of 30; 4 weeks after bowel cancer came back in her brain and kidneys.  She was originally diagnosed with bowel cancer aged just 27.

 Katie (@katiescarb) a former national junior ice skating champion and mother of 2 young children died just last week aged 32 after finally running out of treatment options

All utterly brilliant, dearly loved and much mourned.  Appalling, heart breaking and TOTALLY AVOIDABLE.  We MUST all do more to stop this happening to yet more families.  I don’t have much of a mega phone, but yesterday Matthew Wright did and we owe him and Ben Richards an enormous thank you. Amongst all this heartache, lives are being saved.

Anyway, I will finally finish this blog (It’s been a while so I figured you would put up with me going on a little bit longer) by dragging your attention up the body from bums to boobs. My Mum, my daughter Lois, my cousins Rebecca and Drusilla and my old pins are doing the Moonwalk; all 26.4 moonlit miles of it tomorrow from midnight, in our bras. No I haven’t trained. And don’t ask for a picture yet, because I still haven’t decorated my bra, but rest assured giraffes and bananas will be used.  My Aunty Jane has sent a bulk assignment of goodies in the post today. So yes you will be rewarded for your patience next week. In the meantime, if you feel like supporting us from the inside of your wallet, here is the link; http://www.walkthewalkfundraising.org/banana_giraffes

We are walking to help raise money for not only Breast Cancer charities, but also The Penny Brohn Cancer Care Centre, a magical place of peace and a considerable source of strength to me and countless others dealing with the emotional fallout of cancer.

Thank you truly for your continued support  x

Stiff upper lip and cancer? Can this be the whole story?

I awoke this morning to news that I may have a stiff upper lip.

It got me thinking is this true? Are the UK’s poor cancer survival stats down to a humungous Victorian hangover or do we need to look a bit deeper than this stereotype being suggested by the new report from King’s College London and UCL today?

I’m not an anthropologist, but I would suggest we could do with some serious observations of our macho culture, our importance of not being earnest culture (Guilty M’lud) as well as our too busy culture before we jump to conclusions.

Looking at this from the perspective of bowel cancer (uber embarrassing) and my own experience, I am not exaggerating when I say 100% of all younger patients I have come to know over the last couple of years claim GPs “shrugging off” their symptoms or lazy labelling was the norm. The cost of this is shocking and tragic as too many young families are living with the realisation they may not see their children grow up, or perhaps ever be parents themselves. And we owe them some serious answers.

So yes, how many times do you get knocked back before you start to feel “embarrassed about wasting GPs time?”  I certainly didn’t start out as being embarrassed.  But factor in continued rejection when you talk about your bottom and I challenge anyone not to get embarrassed!  In fact, the first time I heard the ‘poo’ word mentioned it was from my surgeon who threw around ‘poo’ liberally in every sentence without a shred of awkwardness.

But is there also a story around our macho culture and our long working hours causing reluctance to visit our Docs? I would rather chew off my own tongue than be described as a hypochondriac so my colon was practically on its knees before I sheepishly went back again for a 3rd time.  As I said, there are many stones to turn over…

So how can we remedy this?

  1. Greater awareness of symptoms of bowel cancer, and especially its affect on younger patients (2,000 diagnosed each year, and I am willing to bet, we might be diagnosed at a more advanced stage than the norm?)
  2. A touch of ‘Scandinavian’ lip (come on you can say it poo poo poo)
  3. GPs taking us seriously; and help us articulate / prompt us / question us.  In my experience, it was a one way street.  If we are sitting in front of you, chances are it took a herculean effort to get there, so don’t miss the opportunity to talk
  4. Get serious about your symptoms – research and educate yourself
  5. And can someone please do research on how many times a patient visits their GP over say a 12 monthly period before finally been diagnosed.  Bet that would make interesting reading!