If wishes were horses …..

There’s been a bit of a kerfuffle on Twitter recently about an ad campaign for the charity Pancreatic Cancer Action.  The ad features real pancreatic cancer patients declaring “I wish I had breast cancer” or “I wish I had testicular cancer.”  It’s explained that this is because while there is a better percentage of surviving from these forms of cancer there is only a 3% chance of surviving five years with pancreatic.  The organisation’s CEO says that while she was undergoing chemo a friend was telling her about how gruelling her treatment for breast cancer was.  She goes on to say, “I couldn’t help thinking every now and then, “it’s alright for you, you have an 85% chance that you will still be here in five years time -while my odds are only 3%.  Cancer envy: I’d never have thought I would be envious of anyone with breast cancer but I was.”

That phrase keeps coming back to me, “It’s alright for you?”  Really? Which bit?  I could understand if the friend was complaining about ingrown toenails; when I was going through treatment I got a bit niggled when a caller one day didn’t pause for breath while telling me about a back ache when I was struggling to listen while off my head on morphine for the pain my radiation burns were giving me.  I may have thought “I wish I had back ache” but if somebody was telling me about their pain and sheer fear and I was in the position to really empathise would I really at any point think it was alright for them?  In fact someone close to me is going through breast cancer treatment right now.  How will she feel if she comes across this ad?  When she reads this blog?  She’s being fabulous and flirting outrageously with the radiotherapists but when you’re in the middle of treatment I can assure you percentages don’t mean a damn thing.  What goes through your mind in the wee small hours isn’t the big percentage – it’s the little one.

While I understand the point that the charity is trying to make I utterly disagree with how it has been made.  One of the feedback comments for the campaign was the old chestnut tellingly written in capitals, “NO CANCER ADVERT THAT SAVES A SINGLE LIFE CAN BE ACCUSED OF GOING TOO FAR.”  Again, really? I think it can.  I think anything that distresses or makes somebody struggling feel guilty in the name of awareness is wrong and just ….mean.

The campaign has raised awareness and while I don’t begrudge the charity a penny that they might make through it I still support a charity that is working towards tackling ALL cancer and doesn’t discriminate.

Oh and the survival rates for Anal cancer is 60% – 75% according to Cancer Research so I think I’m qualified to comment.

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Well MY Nostromo has an Entertainment deck …

I’ve just been rereading the post from January 2012 called “Dolly has a Condition” and it made me smile. A bit wryly at some bits to be fair. Maybe the little chat with cancer on the beach was a bit cocky now I think about it but the deal was “Do your worst, I’m surrounded by people who love me.” and that still holds true.

I’ve made a decision recently though. With my track record this might not be the brightest idea but to continue my Ripley analogy I think I may have put my exosuit on too soon and it’s blinking heavy. All I know for sure is my Alien is on the very big spaceship and you know what, I’m off to the Entertainment deck for a while and bugger it! It’s not good – no – it’s actually impossible to be on a state of high alert for too long. I’m convinced the tummy and back ache I’ve had recently is very real but I also think that just maybe I need to tell my body to “stand down soldier” and see if that helps. I think it will.

I’m starting tonight. I’m going to put on a posh frock and head to the beach with my two best friends and see in another shiny new year full of possibility and laughter and the most horrendous hangover tomorrow. At some point I’ll take myself off to the shore for a little chat and a toast but I won’t be confrontational. I’ll leave the exosuit in the wardrobe for another day that I can’t even see yet because the sunshine is so dazzling at the moment.

So I’m just about to enter the Entertainment deck, I’m setting the year 2014 *ping* ok the door is sliding open …. Give me a hand squeeze … Let’s go!!

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When Dolly met Kevin – a love story

So the scan results were good in that its not the cancer landing on a major organ in the little roulette game it’s playing in my lymph system.  Whatever the tummy and back pain is can be halted by various pills.  Next PET scan is due in February so until then I’m going to focus on family, friends and that warm fuzzy feeling that you get around this time of year …. as you say “Well I shouldn’t but maybe one more glass of fizz seeing as you’re offering” to the lovely BA staff on the flight to Grand Cayman.

It got me thinking about travel and love and I wanted to tell you constant reader about my very own brief encounter with a handsome athletic South African called Kevin.  Sadly our relationship could never be but I often think back to when our eyes met all those years ago.

It was the early 00’s and my ex and I had gone on holiday to South Africa.  We hired a car and drove from Cape Town to Arniston and then back through the wine country.  We always had good holidays; one of my very best friendships started out in a crowded hotel bar in St Lucia when a glamorous blonde asked if she and her husband could sit at our table.  A few days later we were sitting on the beach downing cocktails, while the boys played golf, watching the speedboat pulling around a big rubber ring at high speed as two occupants squealed and whooped their way round the bay.

“That looks like fun.” said the glamorous blonde I had come to know as Beverly.

“Hmmm” I replied in a vague manner brought on by several daiquiris and a feeling of well being.

“Come on then.”

That’s pretty much been our relationship ever since.  She’ll spot a way which, while scary, will eventually lead to a huge happy smile from me and say “come on then”.  Sometimes it doesn’t even take a cocktail.

Anyway, back to Arniston and a phone call I was making.  The ex wasn’t terribly sure about this excursion but I’d always wanted to do this since I read about it.  I’d researched the company that did it in the most humane way and they had spaces the next day.  I replaced the receiver triumphantly, “Nick, we’re going shark cage diving.”

After an early start the next morning, lunchtime found us and several others gloomily eating cheese rolls in cold drizzle on a small, and now I thought about it, quite fragile looking boat.  The excited anticipation at the safety lecture a few hours before had turned into the miserable anticipation of the captain saying “the weather is turning worse, sorry guys but we did say we couldn’t guarantee we’ll see a Great White today.” at any moment. And yet …. in a promise I hadn’t shared with anyone else I simply knew I would see a Great White shark that day … and I knew also that his name would be …. Kevin.  OK it’s not the most African name and he probably had business cards embossed with “Mr G White, Seal Chomper” but stay with me here.

Just when all hope had gone and we could tell the crew were getting pretty sick of slapping the seal shaped float on the choppy water we saw a fin.  She was “a pretty little thing” according to our Captain.  She had pink colouring and was about six feet long and she flirted with us for a few moments and then disappeared before any of us had time to get into the cage.  Then it was a bit like Close Encounters.  Remember when they actually see a UFO and everyone is euphoric but then the mothership appears and everyone’s jaw drops even further? A much larger fin seamlessly broke through the water and there was my boy.  Twelve feet of perfect killing machine, unchanged since prehistoric times because it doesn’t need to, the Great White shark of my dreams – Kevin. (Stop snorting with laughter at the back.)

We all took turns to jump into the cage.  The idea was you dunked yourself down under the water WITHOUT using the bars to steady yourself.  I cannot stress how important that is when you have those teeth on the other side of those bars.  When it was my turn I fannied about so much trying to manoever an elegant way of getting from boat to cage that the rather bulky captain finally scooped me up in one hand and dunked me like a rather weedy biscuit into a cup of Redbush tea.  Once I’d stopped being alarmed at a burly hand holding my head under water I opened my eyes.  There on the other side of the bars a huge dark pair of eyes met my gaze.  He wasn’t angry, he wasn’t murderous, he was … curious.  I’m under no anthropomorphic delusion that if the cage hadn’t had been there and he was peckish I’d have made a nice snack but somehow it wasn’t scary.  In suitable Deborah Kerr in An Affair to Remember style “…and all I could say was “hello”.”

Cage diving is controversial I know but if you ever get the chance and you find as ethical company as possible to go with I throughly recommend it.  Tell Kevin (or far more likely his great grand child) hello from me.  I’ve never forgotten him.

 

 

 

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The CT scan – a handy cut out and keep guide.

Hello, sorry I’ve been a bit quiet recently.  I’ve been both busy doing legal paperwork, which is now pretty much sorted, and coping with a bit of back/tummy pain which has had me reaching for the various pills and potions my lovely Consultant gave me on my last unscheduled visit a couple of weeks ago.  (You know your health care professional understands you completely when upon hearing various symptoms over the phone only says sternly “You’d better pop in” when he hears “…and I’m completely off my Chablis.”)

He scheduled a CT scan for this week as well as the medication which knocks you out a bit and gives me strange dreams.  So far I’ve swapped make up tips with Joan Rivers on a cruise and been spooked out by numerous haunted houses like some sort of Scooby Doo in a onesie.  Any more opiates and I’ll have enough nocturnal experiences to try my hand at Romantic poetry. (Little joke there for students of Eng. Lit.)

So the CT scan.  I’ve had 2 before when they were trying to work out what the heck was wrong with me  before cancer was mentioned and I just had a huge mouse shaped lump on my left groin.  I’d checked pants for rodents so thought it was time to call in the professionals.  Not The Professionals which would have meant a curly haired thespian lovey type bloke and a short haired burly bloke commando rolling over a Ford Capri …I digress.

Anyway here are some Dos and Donts for your optimal CT scan experience.

1. Get there early.  Not too early but give yourself 30 minutes before the appointment.  This is because if they’re planning to use contrast (more about that later) you may need to drink a litre of water.  If you’re fussy you may want to bring your own because otherwise it’s straight from the tap luke warm NHS water.

2.  Now the fun bit.  When your name is called the nurse will ask if you’re wearing any metal as this will have to be removed.  Here’s my conversation:

Nurse:  Wearing any metal?

Me: Dingly dangly earrings, a ring and my bra.

Nurse: The bra will have to come off but you can keep your earrings on.

Me: *tut and cheeky grin* sounds like every boyfriend I’ve ever had.

Nurse: stunned silence followed quickly by snort of laughter.

Remember, these people stick massive needles in you for a living.  It’s probably best to keep them smiling.

3.  After having removed said metal items and putting dress back on (this one is obviously for female patients only unless you’re really considering or have already made a life style choice gentlemen) enjoy the experience of waiting in a room with your fellow patients who are either pulling a face as they gulp down tepid water or pulling a different but not dissimilar face thinking “who told her she could get away without sturdy undergarments?”

4. Cannula time! Indicate the largest vein in your arm, look away and visit your “happy place” for a couple of minutes and hey presto you have a small plastic thing in your arm and the staff have something to bung iodine (that’s the contrast) in your blood system shortly.

5.  Back to the waiting area.  While away the minutes identifying people who haven’t had this procedure before by the way they look in horror at the cannula dangling from your arm.

6. You are called into a room with a sliding bed and a big polo mint shaped machine above it.  Avoid embarrassment by getting on bed the right way round.  A long telephone cord like tube is attached to the cannula and you’re told to keep still.  The technicians will then explain that when the contrast is introduced there might be a “warming sensation”.  How to put this delicately?  It feels like you’ve wet yourself.  Ready?

7.  You’re left alone in the room and the bed slides into position.  It’s not as noisy as an MRI nor as claustrophobic.  Somewhere a button is pushed, you feel a slight stinging in your arm and then whoosh.  Yep, it feels exactly like you’ve done a puddle.  After the first time when you have proof that you haven’t you can sort of enjoy it.  NB: Do not actually do a puddle, it’s antisocial and unhygienic.  If you don’t get a cold, soggy sensation you’re probably safe.

8.  That’s it really.  After a short pause while they check they’ve got your best side and all the information they need you’re free to pop on the underthings that have been dangling from your handbag the entire time and, in my case, meet a waiting pal and go to the pub.  Drink plenty of liquids to flush the iodine out. *Belushi look to camera*

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Blue bird of Happiness….

OK I fibbed about the weekly update but in my defence I’ve had a frozen shoulder and blah, blah ….I went for an X-ray on Friday because when you’re in my position there’s always a bit of an “oh, let’s just get that checked out shall we?” aspect to any symptoms.  I’m pretty sure that’s all it is and my GP has given me some pills that appear to be doing the trick although they do make me a little sleee …gfhgvfl¬≈~∆ brfk sleepy. *sips black coffee*

Anyway,  various things have happened that have turned my thoughts to that Marmite of social media – Twitter.  Yes, it’s full of spammers, people telling you what they’ve had for their tea, attention seekers who have fewer characters to type than Facebook but still get the “wot’s up Hun?” response they crave and yet …

I can’t remember when I joined.  I’m going to guess 6 years ago.  I was studying Art History then and it seemed a good way to connect with people with the same interests.  I can’t even remember who I first fol – oh yes I can it was Stephen Fry natch!  Since then I’ve followed and am being followed by hundreds rather than thousands (why do I suddenly want a cup cake?) but Twitter, used properly and in my opinion and experience is great.

I’m not going to name anybody but I’m smiling as I think of people I may or may never meet who can make me laugh by for example calling a register first thing in the morning and people from all over England sleepily reply “Here” just for fun or being so quick with their wit I simply stare at my timeline like a confused labrador watching cricket on the telly.

Then there are the brave ones.  Braver than me.  They get involved, they argue.  I may not even always agree with them but they make a stand.  They write books about, for instance, the most dreadful of illnesses with candour and honesty.  I watch them start businesses which flourish because their work is so personal and they work so very hard.

Then there are the kind ones.  They send direct messages to me, I ask them to help a relative with something they have experience of and they do unquestioningly; they send me presents which take my breath away with their appropriateness and thoughtfulness.

A lot of the people I follow are all three and they are my friends.

So scoff if you must about Twitter but I’m not leaving it any time soon.

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In which Ripley has a bit of a sit down and reads the papers….

I’ve been meaning to blog before now.  Before “the news” (yes I did pause to make air quotation marks then) the idea was a weekly -ish blog about other stuff as I assumed I didn’t have to be Not Quite Ripley about cancer anymore.  Also I don’t want you lot to see the blog pop up on your timeline or inbox and think “Oh, not more bad news.  If I wanted this much tragedy I’d watch a Susan Hayward film thank you.”  For those who just thought “who?” shame on you and check out Smash Up – the Story of a Woman for some lovely scenery chewing by la Hayward.  It got me thinking about my girl Ripley.  I think story or script writing is at its best when the characters are portrayed as ordinary people in extraordinary situations.  Obviously a superb actor helps too. As such, it’s not that big of a leap of faith surely to imagine that character doing other “stuff” when they’re not being chased down corridors by a Xenomorph.  Which is a torturously arrived at analogy of my situation.  Yes, I still have terminal cancer but I don’t spend all my time on high alert about it.

So here I am on a sunny Sunday morning with my coffee to be sipped and my cats pestering me for attention.  Clare Balding is just finishing her show on Radio 2 and it’s nearly time for Steve Wright’s Sunday Love Songs or as I like to think of it the “hey the restraining order didn’t say anything about requests on the radio” show.

Since I last wrote my world has been a bit “cancery” for various reasons though.  Other people in my life are facing their own alien and unsurprisingly doing so with bravery and panache.  Also, I recently read an article in The Times magazine about Jennifer Saunders which seems to have caused a bit of sniffing and arm folding.  She was asked if she thought some people keep wearing cancer as a badge and she said, “Forever and I’ll give you why – because this is the job you don’t have to work for.  You get so much attention and, if you’re not used to that, I bet it can sway you a little.”  Hmm.  Now I like Jennifer Saunders and I admire her “no 4 page spreads in Hello magazine about her brave struggle” stance but I also couldn’t help but feel a knee jerk reaction of “that was a bit callous Jen”.  She did say SOME people not all but still.  I suppose my take on it is yes, you do get loads of attention.  Yes, it is heady.  A few days after my prognosis I got a bit “I MUST get my blog reposted on Twitter by someone famous”.  I’m not sure why and I’m not very proud of it.  In my case it was the hopefully understandable panic of “I want to make my mark on this world, me, Debbie Wells” stupidly forgetting the fact that to many people in my world I have.  That comes out as big headed and is not meant to. I’m also guilty of angrily playing the cancer card when receiving my fourth or fifth computer generated threatening letter in as many months from a large energy company while they sort out their problem of working out who lives where in our new build road (well not so new build now) and who they supply energy to. I fired off an email which used the c-word.  Why?  Exactly what difference does it make to their bungling attempts to sort out the problem?  None but it made me feel better for a while after I pressed “send”. Anyway I think for a while I was exactly the sort of person she meant and therefore, to me, her argument is valid if a little brusquely worded. Still it sold papers eh?

Thank you for reading – have a good week and I’ll try and make this a Sunday morning ritual.

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“Don’t be afraid. I’m part of the family.”

That is a quote from Alien 3.  When naming a blog after a film you should be wary of sequels.  I wasn’t going to write this yet but I promised I would and in a strange way I wanted to capture the moment, make it real.

It’s about as real as it gets.  Yesterday my big brother and my bestie went to the Royal Free, sat in an office and got my results.  Believe me for a truly surreal experience being told kindly, gently but with no bull shit that it’s the worst case scenario is a classic.  The Anal cancer has sneaked into my lymph system and as a result the best they can do is make me “comfortable.”

Whoa – wait a minute though – stop sorting through your wardrobe for something suitably solemn/garish because it was also explained to me that the little bugger would have gone un-noticed if it wasn’t for the PET scan.  In other words I have no symptoms yet and it’s not growing fast so far.  BUT I’ll always have it and this time Professor Zappy and Vinnie can’t fight it.  Which is a polite, fey way of saying I have terminal cancer.

But stick around if you feel up to it gang.  This blog won’t change much.  I guarantee honesty and laughs along this new path. It’ll get a bit rocky that’s for sure but with Team Dolly by my side I have the courage to do this with dignity, humour and fabulous nails.

Seatbelts on everyone.  Here we go.

xxxxx

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“Well look where your team is”

You do know I’ve been using Ripley quotes recently don’t you? OK. (because I’d have said “are”)  Anyhoo.

So last Thursday was interesting.  I was late for my meeting with fab new consultant – FNC for short.  Traffic was bad.  He called me and my bezzie in and I was fretting that because we were late we had missed meeting my specialist nurse downstairs and she wasn’t there yet. I thought I knew the score though. Worst case scenario was “It’s back and we call on Professor Zappy”.  Big deal but in the scheme of things not really.

As we walked in my little firecracker of a specialist nurse turned up looking flustered as she’d been looking for me everywhere.  Then it got a bit surreal.  I think I knew it was potentially bad news when she walked over and hugged me.

This is what we’ve got gang.  I’ve told everyone I can think of who ought to know before I blog about it and if that’s not you I either apologise sincerely or maybe you have a financial reason for checking my blog in which case no, I’m not shacking up with anyone and therefore you can mind your own business.

OK.  The PET scan which you will remember will show areas that light up when they have had yummy sugary goodness albeit radioactive showed various lit up bits.  Now this was explained to me by FNC as being due to three reasons.  Reason one, an infection.  Reason two, lymphoma.  Reason three, anal cancer that has spread to lymph system.  As I sat thinking “No hang on, option two is completely unfair – it’s a different sort” the lovely and quite sweary (more of that later)* FNC said “and if it’s anal cancer that’s spread then we can’t do anything apart from make you comfortable.”  I’m paraphrasing because I’ll be honest all I could hear was my inner voice going “Oh shit, oh shit, oh shit”. (*he said “this is an f’ing awful thing to tell you”.)

Then there were tears, phone calls, teary phone calls, texts…..but also laughter because y’know it’s me.

So this is strange.  What do I do?  Do I plan my funeral (yay I typed it!) only to find out that its some infection I’ve picked up from my cats? (Psst but just in case, anybody suggesting “Wind beneath my bloody sodding wings” will be punched quite badly) – dunno.  Tell you what I did do this weekend.  I sat on a picnic blanket on Hackney Downs with a few thousand other people watching Dirty Dancing on a huge screen and at the end when “Time of my Life” came on at the end I sang every word very loudly.*

*Watermelon soaked in vodka may have played a small part.

So.  I find out in a couple of weeks and as soon as I tell my nearest and dearest, you’ll know Team Ripley.

xx

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“What kind of thing? I need a clear definition.”

I really hesitated before I fired up the laptop about this gang but I’ve always said I’ll be honest.  So here goes.  Yesterday I went to the Royal Free Hospital to get the results of my latest MRI scan.  Well actually it was to hug my specialist nurse Amina who has returned from leave and looks FABULOUS.  It was also to meet my new Consultant – haven’t pecked him on cheek yet but we got on and did the Essex girl/vagazzle joke so its only a matter of time I feel.  Then get the results. You’ll remember that this was my “two year since being officially cancer free” one.  You’ll also remember that anal cancer, if it’s going to return, will do so statistically within two years?

When you’re in that office you tend to watch every gesture, analyse every pause and word so when someone says “well its all looking good on the original site” you kind of know what’s coming.  Sure enough I was shown a shadow on the screen.  Then from a different angle (and if you’ve never seen an MRI scan of your big bum from that angle let me tell you it’s an incentive for gym membership).

Now I had some surgery in Spring in that general area and the scarring in the initial site is still settling but – it could be the tail I mentioned in “The Single Lantern”.  That’s a possibility.

So this is what’s happening.  On Tuesday I’m having a PET scan.  I don’t think I’ve mentioned this distant relative of Professor Zappy.  It’s kind of weird.  You turn up and someone solemnly brings in a container which contains radioactive glucose.  You lay down and they inject you with it through a cannula.  You keep very still while it whizzes round your body.  You keep still for an hour.  It’s like the bit in a facial where you wait for the face pack to work and listen to tinkly music except there’s not usually any music.  Normally just as you’re nodding off they rouse you and you go to the scanner which is like a smaller, flash version of an MRI machine.  It’s quieter too.  I bet it has go faster stripes and a spoiler only I’ve never looked.  It’s simple genius really.  Cancer cells get very excited by glucose so they light up as they react to it. (This fits in nicely with my “cancer is a bitchy female” theory.  “Oooh sweeties yummy!”) Then you go home and try not to have much contact with anyone for a while because you’re radioactive.  I’ve had three of these and still haven’t received my Super Hero application form.

Obviously we’re hoping it’s nothing.  Obviously it might be something.  So we wait while people peer at computer screens.  It’s a bit of a wait due to NHS funding (*Ben Elton in 80s face*) and me wanting to wait until my nurse is on duty because I really, really want her holding my hand when we get the results.  If the cancer has returned, it’s been spotted quickly so the plan is we bitch slap it out of existence with a short course of radiotherapy.

It’s an odd feeling that’s hard to describe.  It’s always in your peripheral vision.  I think even after years of getting the all clear it would be.  Now it’s right up in my face again with all the anticipation and the frankly horrible phone calls when you can hear your loved ones’ thought processes whirring away and you’re both being cheery and positive but you want to hold them tight and fast forward until you can say “it’s ok” and see them grin again.

So we have a bit of waiting to do.  Listen, after that news I’m sure you could all use a drink – I’ll go to the bar.  So that’s wine, lager and a couple of gins. Crisps anyone?

 

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Things that make me go “hmmm”

Sorry to reblog but think certain readers thought I was a private patient when I wrote this. No. This is how good NHS are

Not Quite Ripley

I’ve alluded to this on my Twitter feed and Facebook page but I’m so stunned I feel it needs further comment.  File this under “What the heck are these people thinking?”

So, on Wednesday the nice radiotherapist gave me my schedule and almost apologetically said, “We’re in next Friday, would it be ok if you came in?” Well blimey yes! That’s another day towards when I finish so of course. I replied something like “Oh I love you guys, that’s brilliant!” He looked a bit pleased and said “well you’re the first person who hasn’t complained that you’ll miss a bit of the Royal Wedding.”

Now I’ll be glued to the telly next Friday.  I love a nice frock and mangled wedding vows as much as the next girl.  However if it comes to a decision between possibly seeing Kate get out of the car and having a treatment that’s…

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