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!
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I have my body back finally

A funny thing happened on the way to the shower this morning. I caught sight of my body in a full length mirror.  For the first time in over 18 months.  I was suddenly aware that I had consciously avoided this moment since the shock of realising that it was letting me down all those months ago. 

It was quite a moving experience.  I saw myself for the first time.  Not as someone who was scarred from 3 major ops, 2 minor ones and 8 gruelling months of chemo.  But as a new whole person.  I kept turning around and viewing myself from all angles and, I didn’t see the lumps and bumps and scars.  I saw past all this and saw a strong body that had taken all that medical science could chuck at it and still bounce back for more.  Stronger I hope.  No, I am not going all Californian on you, but I did feel more beautiful for it.   

Yes, I have cared for it with pills & potions (supplied daily by Superdad) endless rounds of acupuncture, and even exercise when I felt able to.  But looking back it was more like the care of someone who had suddenly been told to look after a friend’s child.  Of course you care for it, feed it, keep it as safe and warm as you can.  But you don’t love it as your own.  But today, I did.  Finally. 

I think I am now ready to start treating, and really listening and learning to trust my body as mine again.  I can stop thinking of my body as a selection of parts; the bowel bit belonging to one hospital and consultant; the liver bit belonging to the other hospital and consultant and the chest bits to yet another hospital. No, my body is no longer the property of the medical profession.  And to celebrate this epiphany, I am taking it shopping today!

p.s. Don’t be rude.  Of course I am not going to be posting a naked photo on this blog.  How could you even think of it…

 

 

I’ve been de-ported at last!

My hospital visits are now thankfully reducing as fast as sales of Lance Armstrong’s memoirs.  But anxious to get the most from our ‘season ticket’, my children have done their best to take up any slack over the last few days.  So let me tantalise you with the edited highlights.

Joseph had eyes bigger than his belly, Lois’s finger was hanging by a thread and I was de-ported. Still with me?  Good, then we’ll continue.

Friday “Hello, this is Holmer Green School, can you please collect your son, he has lost all vision in his left eye and we think he may have a detached retina”.  Champion.  I am not allowed to drive yet, so Supermum was drafted back on the case and despatched with my one eyed son to Stoke Mandeville.  Thankfully, it turned out to be a visual migraine resulting from a kick boxing accident the night before.  And if that wasn’t enough, the other eye jealous of all the attention, got itself splashed with hydrochloric acid (albeit thankfully highly diluted!). Hypnosis alert; look into my eye.

joseph eye

Monday: “Hello this is Wycombe High School, can you please come and collect your daughter and take her to A&E as she’s just had her finger sewed to the sewing machine”.  Awesome.  Not the words you want to hear when you are still learning to control your bowels!  Supermum had just been allowed out again on parole to the local Tesco’s for provisions, but was quickly yanked back on the extendable lead we have supplied her with. Dumping the shopping for my Dad to colllect, she drove me to the school to hold Lois’s other hand whilst the needle was swiftly removed with the help of gas and air.  (Note to Lois’s future husband reading this after 2025 at the very least, or there’ll be words, she doesn’t ‘do’ gas and air, think again). But not one tear or word of compaint.  Top girl.  Look away now; squeamish picture alert. Oops too late!

lois finger 002

And In other news, I was de-ported today.  My ‘power’ portacath or USB port as I call it was finally allowed to be removed.  I know I’m not out of the woods for years yet, but 6 months of clear CT scans was enough to make me want to get the last reminder of cancer apparatus removed from my front body.  And as my oncologist cheerfully reminded me, I can always have one put back in if the cancer comes back.  Cracking news.  But with a great big fat caveat that I still have private healthcare, because nuking you through a closed port straight into your jugular is classed as a luxury, naturally.

So here’s the drill for taking out a portacath.  No sedation.  More on that later.  But lots of local anaesthetic which I was warned would feel like I was being stung by a bee.  I put on a nice hat, was told to lay down and look right whilst I was covered in a sheet of plastic hooked over a drip stand, not unlike an abattoir I felt.  A section was cut out exposing my left chest and a stray boob.

There’s quite a bit of cutting, shuffling and pulling around inside your chest to locate it (apparently mine was deep.  I was strangely proud of this) and some rather disarming scraping noises. So to avoid focusing on what was going on with my jugular (yes my surgeon come radiologist come rock star did tell me he could cause a bleed but I was comforted to hear he “knows how to stop it”) my mouth was unleashed and I talked non-stop about all manner of nonsense. The procedure took just over half an hour to remove during which time I learnt (or thought I learnt) that:

My surgeon stitched me up with pink cotton (apparently not, demands for “More pink” whiilst he was sewing meant something entirely different). Any liquid I felt trickling down my chest was to be identified as follows; “If it’s warm it’s blood, if it’s cold it’s pink”.  My portacath wasn’t “stitched down” in position explaining the awful bother my chemo nurses had to keep the blighter still so they could stab it with one of their thick needles each time.  Pat doesn’t have her own slide, it’s a slide to move patients onto beds apparently (PATSLIDE).  My chest x-ray was clear of any left-over bits of tubes and stuff. And finally, my radiologist was a thoracic surgeon and is also a part time rock star which I will now be looking up on youtube.  I mentioned I was also on youtube dressed as a bananagiraffe to which he replied “Why doesn’t that surprise me?”. 

The last words I heard him utter to his nurse as he wiped sweat of his brow; “My goodness we should have sedated this one after all.  My ears are bleeding more that her wound”.

I now have to wait four dry (note to self do not get chest wet) days before I can inspect it and thank Dr Radio/Chest/Rock star for his neat sewing.  Hopefully no fingers were lost in this episode. Righto, I’m now feeling a bit light headed, so going to rest my head.  Amuse yourself in the meantime with a picture of the removed specimen in a jar.

port 002

Just been tying up loose ends

I’m home now! This last week hasn’t been quite the rest cure I had hoped but it’s been worth it to get a new bum for my birthday.

After checking in last Tuesday we were confronted with the usual test of nerve interview with my surgeon.

“Do you realise this is major surgery? I will attempt to do blah blah, but you must be aware of the risks of a leak which can happen when the bowel is rejoined.  If this happens, you will suddenly feel very unwell about 3 or 4 days in and be rushed back into theatre, end up in intensive care with septicaemia and of course another bag.  Do you want to pass go?”

“But, the risks are very small” I said motioning unsuccessfully with my eyes to my children who were in the hospital room waiting to see me off, Joseph by now shaking his head and sternly mouthing “No, Mum” to me.

“Well…..” followed by prolonged shrug, “about 3%”.  

Well I’ll be a monkey’s uncle, that’s ok then, what are we waiting for.  Apparently a small delay for Mr H to get his saws from the back of the car, peel both children off me; a historic moment as both were cuddling me so hard they had momentarily forgotten to argue over who had access to the most legs or arms, and we were off!  Yet another reminder (if any was needed) as to how much tougher this has been on my family.

Whilst prepping me for theatre I happened to notice the trays of medical equipment and was particularly taken with Guedel Airways, less so with Nasal Airways.  “Where are we off to then?”  I said to my Chinese anaesthetist.  “Where would you like to go?” he asked.  “Mauritius?” I said hopefully.  “Sounds good, I was born there, let’s go” he says whilst administering a delicious cocktail.

I came around some 4 hours later was wheeled back to my room and began babbling incoherently about Eric Bristow, the A405 and the Satsuma man. That’s morphine for you!

16 pumps of morphine later I was chucking up like a kennel full of sick dogs.  So my precious pump had to be withdrawn and I was forced to choose between pain control and sickness control.  I opted for sickness control, somewhat unsuccessfully. After sampling every drug in the hospital and even one couriered in from another local hospital, my veins were collapsing faster the price of Christmas puddings.

Eventually on day 6, I was able to slowly introduce light food and get accustomed to the utter boredom of hospitals.  By the weekend, there were only 2 of us in the entire hospital and the other women never left her room. 

The good news is Mr H is a miracle worker and put me back together again, mostly by keyhole (main exit point was more of a letterbox). My bowel eventually started working again (TMI!) after 5 days and what do you think I got/lost for my 6 days of not eating? Half a stone. Thank you very much indeed.

If anyone else is going through a reversal here’s some things you might want to know;

  1. Don’t worry about your bowel restarting again, it can easily take a week, but it will!
  2. Chewing gum helps stimulate the bowel
  3. If you get past day 4 without trouble, the join is almost certainly good
  4. Don’t eat any raw vegetables or fruit, or onions in hospital, bad move
  5. If in doubt, don’t eat
  6. Exercise very gently regularly, you need to try and get mobile as soon as possible
  7. Expect the unexpected and learn to be patient
  8. It’s a major shock to your system and your body will take 3 months to repair the tissues so rest lots

But to end on an uplifting note, my dear friend Andy Blackford reminded me this morning of kintsukuroi meaning to repair with gold; the art of repairing pottery with gold or silver lacquer and understanding that the piece is more beautiful for having been broken.  My own repair was made with titanium staples so maybe not quite so beautiful, but nonetheless it’s thought provoking.  I love my new bum!

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The restoration project (aka a birthday bum!)

I’ve been busy these last few months.  I know it’s a lame excuse for my lack of activity on the blogging front but as some of you have been asking for more updates, here goes. You’ve only yourself to blame for the following unconnected ramblings!

Last month, I had my pre-op. It’s a bit like going through check in. Body weighed instead of bags.  Blood extracted instead of cash.  And questions.  Loads and loads of questions.  And a serious amount of form filling.   So to distract me I decided to approach it as if I was ordering from an inflight menu and ticked enthusiastically;

No to CJD, Hepatitus or MRSA

Yes to ever having a serious illness

No to recreational drugs

Yes to not being shy on the legal ones

All fairly reassuring so far, until I came to one question which got me a little jittery;

“Is there anything else the surgeon or anaesthetist should know?”

Well, I can confess to having done a fair bit of swotting on abdominal surgery and watched entire episodes of Holby City, but I wouldn’t yet consider myself qualified to fill in any gaps in their knowledge. How flattering.  Or worrying.

Anyway all this activity is the precursor for a procedure called the Hartmann reversal.  Procedure; an innocent enough word you might say, but one which nonetheless takes on sinister connotations when mentioned in the same breath as hospital.  But, if you allow me strip away the veil of medical mystery; what we have here ladies and gentlemen is a procedure for a new working bum.

Yes, you did read that right.  I am getting a new bum for my birthday this year.  You might want to read this next bit on an empty stomach or at the very least take your hand out of that biscuit jar.  Think of it as your “going on a new year’s diet with Rachel” resolution. Other diets are available, but my idea of a diet is to go and get myself some major bowel surgery and reverse all this good work that some chap called Hartmann invented.   

I don’t know if you were expecting this degree of medical over-share when you opened up this blog, but since I assume you didn’t tune in to read all about the latest animal flavoured cocktails on the market (if I am wrong, please accept my sincere apologies for having mislead you so far) you can always scan a bit further down or just run with this one.

You may remember, my surgeon kindly removed part of my recto-sigmoid colon where the tumour was and capped the remaining rectal remnant inside me and re-routed the rest of my bowel to form a colostomy.  He is now promising to try and locate the forgotten bit leading to my bum and join it back together with the other bit.  With a staple gun.  He plans to do this by keyhole surgery, but this will depend on how much scar tissue (or marshmallow fluff) I have created.  If he can’t see what’s going on, he will slice me open and that will be a bit of a pain as so far bits of liver, gall bladder and bowel have all made their exits through tiny incisions.   So it would be a shame to mess up the dot to dot patterns now. We will have to wait and see.

Still with me? Jolly good, the next bit is easier I promise. A few missing weeks and months of medical shenanigans and then we’re done. 

I have had a couple of CT scans.  First one unscheduled and brought about by my thankfully overzealous surgeon who wanted to check out in his words “if the cancer had spread to my lungs or rib bones” after an uncomfortable few weeks which turned out to be costochondritis (inflammation of the bits that join your ribs to your sternum).  Some things however you just can’t un-hear and so naturally the 7 days waiting for results were a bit unnerving.  Not to say uncomfortable as my surgeon decided to also throw in a mammogram for fun. 

Having gotten away with a clear on both fronts he launched straight into my annual colonoscopy.  The man was on a mission.  And as I still hadn’t erased the shock from my last and only one, I begged him to shovel as many sedatives as he could into me and to my relief he obliged and administered a dose that would have rendered Michael Jackson catatonic.  It was nice though.  And even nicer to hear my bowel was still clear and in good enough working order for him to consider a reversal operation.

And the clincher was my 6 month CT scan a couple of weeks ago which also came back “no evidence of disease!”.  So I am delighted (under statement) to be still in remission and intend to keep it that way.

I even risked getting my teeth checked out and buffed up.  So my dear readers; this body is as good as it now gets!  Or it will be in a few days.

In-between trips to hospitals, I somehow managed 3 months back at work and plenty of knees up with dear friends old and new. One such outing started out as a virtual party on Twitter one Friday night and ended up with a promise to go ‘retro’ and meet in the flesh resulting in a 2 day bender in October.   I believe they call it a ‘Tweetup’.

We were all curious to know what would happen once we stepped out from behind our avatars and confronted the real life versions. Would we instinctively reach for a hashtag after each sentence?  Or perhaps try to “favourite” someone, or retweet a comment?  One of our friends did try to do the finger and thumb push out thing on the printed menu, but other than that we spent the time doing flesh and blood things like hugging and laughing.

Over the past year and more, we have all formed extraordinary bonds on twitter and it’s been truly wonderful meeting people we would never normally come into contact with. 

One of these encounters was with a new dear friend, Dr Robin Hesketh (a research scientist in the field of cancer and a member of staff at the Biochemistry Department in Cambridge and a Fellow of Selwyn College) who answered my original plea for distractions during chemo with a request to be his reviewing editor on his blog www.cancerforall.wordpress.com.  We kept each other amused and distracted and eventually met up a few weeks ago in Cambridge.  I left with an orchid, a book on understanding genes and a few extra IQ points.  Whereas Robin left empty handed with a look somewhere between shock and bewilderment and no doubt a deep desire to be the owner of a time machine allowing him to reverse fast and erase his question “So tell me more about yourself.  Why are you single? Have you ever been married?” So please repay his patience by checking out his excellent book on cancer for novices called Betrayed by Nature http://www.amazon.co.uk/Betrayed-Nature-Cancer-MacSci-ebook/dp/B0074H8IXS/ref=sr_1_1?ie=UTF8&qid=1357056461&sr=8-1

Anyway that’s enough nonsense from me for a while.  None of this good news would be possible without the enduring support and love from my dearest family and friends who have spent the last year walking each step with me and have a further few weeks to get through before I let them off the hook!  My Son seemed upset last night when I mentioned I was going back into hospital for this operation and told me to make sure I didn’t overdo it and to look after myself and stay in for the whole day or maybe a night.  I will leave you to picture the expression on his face when I reminded him I will be in hospital for about a week.

Righto, I’ll be off then.  Tomorrow I will again put on those paper knickers, tight socks and the gaping back gown, sign the victim consent form, hear the long litany of things that could go wrong and pray my surgeon still has steady hands and is hangover free!

A happy, healthy and compassionate new year to you all x