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.

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!

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.

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!

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

Today I have been given my life back!

So here I am facing the consultant who gave me the cancer diagnosis and stamped a ‘best before’ date on me nearly a year ago.  The same room, the same place.  My Mum, Dad, brother and Jenny holding hands and breath.

And the news is I am in remission!  But my goodness didn’t he make me work for it!

“Hello, how are you feeling?”

“Great… I hope, just need to hear the results please”

“Oh, you had a CT Scan did you? When was that?  How odd, my secretary didn’t warn me…”.

Lots of rustling around on the desk and frantic logging in on the computer. “Let me get the scan results up now”. 

Oh dear no, surely not.  Where are the hidden cameras? We are going to have to do this live, anxiously watching every twitch on my consultant’s face as he reads the scan results out aloud for the first time in front of us. 

After what seemed like an eternity discussing my bowel and liver surgeries and the fact that I had (unbeknown to me) another 1cm cyst on my liver which he ‘presumes’ my liver surgeon knew about and was therefore not cancer….he said “Yes this looks fine, you are NED (no evidence of disease) or NSR (no sign of recurrence)!” And for extra emphasis “considering where we were a year ago and how aggressive it was, it’s amazing we have got rid of it”.

I could kiss him.  He was grinning and said I looked really healthy. And believe me this is a very good sign from Mr H who doesn’t give good news lightly.

Joseph said this day was the best of his life and he hasn’t stopped hugging me.  Lois has been very thoughtful and reflective and admitted to crying on the school bus today with nerves.  I doubt I will ever know how deep this last year has affected them.

Today I have my life given back to me and I am deeply happy and thankful. 

Thankful to my 2 consultants and oncologist and the docs and nurses who have nursed me back to health.  Thankful to my Mum and Dad and brother who have loved me back to life.  And thankful to my dearest friends and close family who never gave up hope and have been by my side every day.  Especially Jenny who has been one in a million throughout these last 10 months and kept me sane with nonsense all day. And thankful to God for answering my prayers.

Now all I need to do is get this chemo out my system and start to feel normal again.  Mr H said to expect this to take about 2 months.  Last chemo tablets taken tonight and the rest of the bag of tablets chucked in the bin, replaced by a diet of Champagne! At least for this week. x

Scanxiety and a lesson in distraction

Today was the day I faced the emotional roulette wheel that is called a CT Scanner. After nearly a year of surgery and chemo, I can now look forward to spinning around for the next few days in limbo until it chucks me out either on either the red or black next Wednesday evening.

I remember reading sensible advice about dealing with Scanxiety which to put it simply recommends either distraction or confrontation as a strategy for keeping your heart rate out of the tachycardic range!

Distraction was the strategy of choice and sure enough it presented itself, although not quite in the manner I had in mind. Neutropenia had won again and I had mysteriously picked up a nasty little sick bug which visited me yesterday and resulted in the Ian Rennie nurses sticking needles into my thighs last night to stop the sickness.  I was no better in the morning so was told to take nozanin during the day, a very strong sedative and anti sickness pill.

Here’s where the challenge bit comes in.  I had to turn up this morning viewing the world through what seemed like a film of bendy plastic, drink 700ml of white contrast dye and then lie down in the scanner.  Luckily this wasn’t the MRI scanner that requires you to train as an oyster diver in order to hold your breath for eternity, but a gentler one called a CT.  Despite a belly and armful of contrast dye, the nozanin tablets overpowered me and I nodded off and needed repeated proddings and computerised voiceovers to get me to move.  Not the worst place I have fallen asleep, but I wouldn’t rush out and look for special offers on laterooms.com if I were you.

Meanwhile all these shenanigans have left me feeling pretty numb and I am now less expressive or mobile than your average mozzarella.  Poor Mum has held the fort for over 10 days now and I need to release her to go to my Aunt & Uncle’s alternative royal celebration (their diamond wedding anniversary) tomorrow which sadly I won’t be well enough to attend but wish them very well and hope the diving equipment has turned up for what used to be called their garden.

            

p.s. a picture of the beautiful flowers my darling brother turned up with on Sunday to celebrate last chemo as well as a bottle of bubbly to open on Wednesday evening.

p.p.s a wicked hamper full of sweets that dear Jenny sent for the kids for being so good during all this rubbish.   I am encouraged by how well Lois is dealing with it all; when telling her about the CT scan today, she interrupted and told me they now do magnetic nail varnish and then did a handstand! All is well. x

These pictures say a thousand words – Race for Life!

Hurrah for the the plug hole in the sky over Wycombe holding long enough to allow some of my adorable friends and family to run race for life yesterday!

Big shout out to Julie and Livvy Palmer, Tina North, Liz Waterson, Rachel Cramer, my niece Esme on her first run, and of course my lovely daughter Lois and my Mum, for all running for CRUK and showing me such incredible support as well as raising well over £1,000 between them.

There’s nothing like the sound of the starting horn and seeing hundreds of women each with individual stories of how cancer has touched them or their families to bring a huge lump to your throat.  And yesterday was even more poignant remembering this time last year when I ran the race with my daughter and Mum (as we do every year) feeling poorly and just days away from being diagnosed with bowel cancer.  So here’s to everyone yesterday who took part, fundraised, donated or is still facing their own struggles with Cancer. You make such a difference and I for one am truly grateful.

Bown’s bunnies!

Job of the week

I am not a completer finisher.  I have even been know to start sentences and

Up until now this finishing trait hasn’t caused me too many problems (if you count my previous marriages as challenges, not problems).

But I had no idea this personality ‘defect’ would be inherited by my body, which has enthusiastically decided to do anything other than finish building its’ immune system this week.  It seemed, however, to have enough time to make countless new grey hairs, layers of subcutaneous fatty tissue and excessive leg hairs. 

As my final chemo is now long overdue, I, or more accurately my body (we have stopped speaking to each other on account of above) has decided against returning to the chemo ward this week and after today’s shabby blood results, it is highly likely to put it off for another week. And before you ask, it’s pointless asking me to have another chat with my body about all of this. I have come to the conclusion that it’s got even worse at listening than Andrew Lansley.

So, I have decided to recruit an interim body to finish this one off for me.  And a rather generous package awaits. Any applicants will get:

1. a week or 2 in bed
2. a bag of legal drugs
3. a free acupuncture and reiki session
4. a slice of cake and a badge

Applicants will need:

1. Good bone marrow
2. flexible working arrangements
3. love of needles
4. love of daytime TV

I thank you. x