Get the cannoli ready – he’s coming back

“Excuse me? Say that again?” The nice young doctor at A&E continued to look bemused and repeated “There’s something weird about your X-ray. The stent you had fitted has … Gone.”

I mentioned the stent last time. It’s a three inch tube of tungsten metal that had been placed in my bowel to keep it open and was fitted during my last hospital stay a few weeks ago as the pesky primary tumour had been pressing against it making bowel movement nigh on impossible and causing much pain and lack of appetite. Now I was back 3 weeks later with the same symptoms and the explanation appeared to be that at some point I had expelled the stent … That’s the as I say three inch tube of strong metal … And hadn’t noticed. I’m proud and appalled by my bowel strength in equal measure. I think it was during the unpleasantness when weeks of not “going” were condensed into 3 days and nights of putting that right, and during the eye crossing pain and confusion that caused somewhere a small metal tube found it’s freedom. Happy sailings little fella!

So now we only had one option and on Saturday I was wheeled down to theatre and came back with a stoma and a colostomy bag on my tummy. Don’t worry I’m not going to go into too much detail about either apart to say that it really could be worse. I’m still coming to terms with the appearance and the process but for someone who has steadfastly refused to change a nappy in their life I’m dealing with this new regime ok I think. This is due in no small part to the Stoma nurses whose job it is to teach you the basics in as kind, matter of fact and speedy way as possible. Mine just happened to be two of the coolest girls on the planet. They dealt with the first one while I watched carefully and a little grossed out then said “ok your turn, take that one off and put another on.” I did. Then my instructions were to change one by myself before the next morning and they’d come by and check it. I failed in this mainly because the high strength antibiotics I was on post op were causing nausea and sickness usually brought on by a much better time than I was having, the sort usually brought on by some fool saying “I’ll open that other bottle.” I didn’t want to let them down though so I lay in my hospital bed that night practicing with hand gestures like a marine practicing how to strip and resemble a rifle so that when they arrived I could ask them to guard the door (you have no idea how many people pop their head in offering breakfast or newspapers from the trolley and I didn’t want them to be faced with me mid change clutching a wet wipe while I dealt with what looks at the moment like a scene from The Qatermass Experiment on my tummy) while I prepared carefully then changed the bag. I did it! If this was a particularly gross version of The Generation Game I’d have won the round. They were pleased. I was proud … And it was a step towards going home.

If I thought I had time to rest on my laurels though I was wrong. I’m on a mission gang and here’s where the cannoli comes in. I think I’ve mentioned that I’ve dropped a couple of stone and I can’t climb stairs without stopping in the middle. This simply isn’t an option for what’s happening next. The primary tumour is also pressing against my spine and is just generally, literally being a pain. My lovely consultant had a suggestion for this – palliative chemo – and it has to been soon as that alien is active at the moment. I like to think I’m a coper but when he came in to discuss it I’m pretty sure I cried. I felt like I’d just run a marathon and he’d asked me to pop to the shops – in Outer Mongolia – on foot – in sling backs. I stammered that I wasn’t ready. Chemo takes it out of you and I didn’t have any “it” left – none. They were simply asking too much ….. I know I cried that night and yet …. It’s a character trait of mine that when I hear my whiny little voice saying “I caaaaan’t, it’s too difficult” I get irritated. I get all Drill Sergeant in Private Benjamin.

So I’m on a mission. I’ve got a couple of weeks before that Noo Yawk thug Vinnie strolls back in my life straightening his grease stained tie with clumsy pudgy fingers, grinning at me and saying “Ya ready?” (Please see previous posts about why I call chemo Vinnie) and I can’t disappoint him. I need to sit my as normal weight as I can possibly get to body in that chair in the chemo suite, roll my sleeve up, watch them attach the drip which is going to kill the rapidly dividing cells in my system and give me ulcers, nausea, hair thinning and a real shot at as normal a life as possible for a while (because it’s only this one tumour playing up so far the rest are still slow growing) and I’m going to whisper “Welcome back Vinnie – let’s do this”

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Posted in anal cancer, Bowel stent, Chemo, colostomy, terminal cancer, Uncategorized | 1 Comment

The sigh of relief of DOOM

When will I learn? It’s embarrassing. I love a good horror film and I know how they work. Our hero leans against the wall after a particularly scary encounter, blows out a huge sigh of relief and BANG my popcorn is all over the floor, the alien is scurrying off and there’s mayhem. I should know this.

I finally waved goodbye to Ward 11 on Tuesday 27th May and made my escape clutching a large carrier bag of various drugs they’d given me. It was quite late because there had been a bit of a disagreement about the technicality of the term “bowel movement” (Oh yes IMPORTANT you are reading a blog by someone with anal cancer, sometimes this gets a bit necessarily erm “poo-centric”. You may wish to skip this post if this is too much to consider or you are raising your first spoonful of cocoa pops – honest I won’t be offended – see you at the next post.)

Right you sickos still with me, here we go!! So yes, THEY said I couldn’t leave until I’d had a bowel movement. I immediately called upon the services of my lovely Yorkshire nurse and her enema kit. I was, for various reasons *tilts head and raises eyebrows at occupant of next bed who had kept up a steady somewhat impressive stream of complaining, moaning, screeching for six days and NIGHTS* eager to return home by any means necessary. There was then a bit of a discussion about the fact that nothing had been said about the results of the movement and it was clear I was determined to argue the point so they gave in.

So I was finally home. My own bed, my cats, my bathroom – lovely neighbours, visitors and sleep that felt as luxurious as cashmere. It took me a couple of days but my appetite was returning and I was managing a few wobbly legged short walks. Sure I hadn’t been to the loo yet but I joked with the 6 laxatives a day I was taking it was only a matter of time. Reader. I leant against the sodding wall and blew the sigh of relief OF DOOM.

I won’t go into vast detail but cast your mind back to the last time you had “the trots”; the cramping, the sweating, the sheer exhaustion of waking up after an hour’s hard won sleep in panic, the hatred of your body for betraying you in such a disgusting, humiliating way. I had 3 full days and nights of it. You’re told to eat but you honestly can’t because I think it’s a primal thing not to put anything in the top end of the tube when something bad is happening at the other. You can’t move very far from the bed or the bathroom, there are adult nappies involved, somewhere an alien smirks in an air duct and watches and you shout “Stop smirking you bastard because this is the price I paid to stop what you were trying to do. You tried to strangle my bowel and every dehumanising horrible moment proves you lost this one Alien. It’s working again – it’s clearing. So get back to your air duct ”

So on this bright Saturday morning I start again. My neighbour gave me some breakfast this morning with her pleading expression, fully expecting me to cry and say I couldn’t. I finished the lot with relish. I’m planning to continue the short walks today. However if I see any walls I won’t lean on them – just for a while.

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I didn’t know what a stent is either …

Well this is all a bit embarrassing. Guess where I am? I’ll give you a clue. They gave me my meds at 5.30am and I’m sporting some rather fetching paper pants.

So here’s what happened. I may have mentioned the niggly tummy ache/back pain that has been bugging me for months? Yeah we know what it was now. Unfortunately it took …. well not to be dramatic but near collapse to get me to this point. It happens so slowly. I went from skipping a few meals to packing in eating because whatever I did the burning nagging pain in my tummy wouldn’t stop but seemed to get worse with food. Constipation was suggested as a possible cause but either nothing worked or there was much effort and eye crossing pain for very little result. By Tuesday after pretty much a fortnight of being doubled over Miss Stubborn here finally went to see her team where Amina took one look at my 7st 10lb frame (I’m usually at least 9st) and informed me I was stopping in.

Since then I’ve been looked after by the girls on Ward 11 who bring me pain meds and boss me mercilessly to eat properly. I’m also the proud owner of a new bit of shiny metal. I won’t show you if you don’t mind but it’s called a bowel stent. You see what had happened was the tumour near my coccyx was pressing on a bit of bowel so hard it was obstructing it. Hence food wasn’t budging above it and it threw my digestive system in a bit of a tizzy hence the sort of pain that makes you cry those big snotty tears.

What the stent does is open up the bit of bowel and I had the procedure yesterday. So far so good. I’m a bit sore, I was a bit terrified about the mechanics of getting a stent in the right place but as promised I was under heavy sedation so I only caught the last five minutes of my innards on the big screen and I vaguely remember being groggily fascinated.

So now I take time to recover. If this works gang then loads of problems will disappear for a while and I can get back to the business of having fun rather than being curled up in a ball. My diet will have to change to accommodate the stent. Out goes roughage, whole grain, legumes, tomato skins, raw vegetables …. Anything healthy really and in comes white bread and pasta and booze. I promise it’s on the recommended side of the chart.

Speaking of my new white van man diet it’s nearly time for my builder’s tea breakfast so I’ll sign off. Still here though Team Ripley, just getting my game face back on.

Ripley out xx

Posted in anal cancer, Bowel stent, terminal cancer | 5 Comments

“Well I’m sorry to disappoint you”

Dear “Alien”,

At the risk of bad karma by gloating I’ve got to say you must be feeling pretty disappointed recently.  First that phone call from my lovely Consultant telling me that as the tumour on my liver is pretty titchy still its been decided that the best course of action isn’t palliative chemo (phew – it’s worth having my hair cut and coloured then) and it isn’t RFA (phew – lightly grilled liver and bacon can reappear on my menu option radar for a while longer) it is in fact … nothing!  Yep, at the time of writing this you are so small and insignificant we’re just ignoring you unless you decide to up your game before my next scan.

Just before I had the phone call I’d already decided on an impromptu visit to my family in the Midlands over the Easter weekend and for a maximum sense of well being spending time with your family age ranging from 83 to 2 is thoroughly recommended.  If you can throw in the fact that you can tell them the good news about treatment or lack of it it’s even better.  If, after months of not really eating much you can polish off  the best chips in the world, lasagne, roast lamb dinner including pud  and, the most wonderful imaginary strawberry cupcake then it really doesn’t get much better.  OK I’m still off booze and I still get tired and I sometimes get stomach cramps that make me a little less chatty for a sec and I’ll grant you, Alien, there were some moments that were bitter sweet and stung my eyes a little bit but nevertheless it must have sucked to be you the last few days.

See you at the next scan.

Not Quite Ripley

Posted in anal cancer, Chemo, RFA, terminal cancer | 1 Comment

“This is Rumour Control. Here are the facts …”

So I got the results of the latest PET scan today.  The secondary cancer is growing but slowly.  A centimetre has become 2cm in some cases.  The bright light of sugar intake that caused slight concern was on my liver.  So this could be the first “salvo”.  I’m going to have another MRI scan just to confirm but if it is and if there’s only the one area then I get to have a new procedure – an RFA.  I googled this excitedly only to be told it wasn’t anything to do with hunky sailors in the Royal Fleet Auxilliary but rather a Radiofrequency Ablation.

It’s a quick procedure and they give you lots of lovely sedatives first before a local anaesthetic then they zap it.  I’d be back on my feet in a matter of days.  If by any chance it isn’t the only area then chemo was mentioned which understandably caused me to shudder because of both last times’ fun and my “no chemo this time rule”.  Have I mentioned that before?  I’ve always said that while I’ve made my peace with this thing getting me I’ll be damned if I’m having chemo just to extend my life.  Given the choice between a few more months spent feeling absolutely lousy with thinning if any hair or having less time but spending it feeling as fab as possible and partying hard while I  can then I’m an “Option B” kinda chick.  However, if I’m pretty much guaranteed that it’s worth it – if quality of life is still there after a few weeks of chemo then I’ll roll my sleeve up say “go for it” and order some box sets.  That’s jumping the gun though.  Let’s see what happens with the MRI.

On the way home my bestie asked how I felt about today.  I shrugged it off a bit but I’m torn between “OK this is the beginning, here we go” fear as I was reminded by my lovely Consultant that its been 7 months since diagnosis and the median time given for this kind of thing is 2 years and (oh I hope this comes out right) “Blimey that’s a bit of a weedy first salvo”.  I said to my Consultant that it’s a bit like a really slow start to a game of Space Invaders.  The cancer has sort of ambled across the screen and if things go well then we just glance up from our book, go “zap” and carry on reading stifling a yawn.  It’s not white knuckle stuff yet is it?  Don’t get me wrong, that suits me just fine… but it IS dealing with Not Quite Ripley you know!

So that’s the news Team Dolly.  That’s where we are.  I wonder if we can compromise and get hunky sailors to do the RFA.  I’ll ask the Royal Free.

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“That’s amazing. What is it?”

If you want to feel a bit like Ripley on an alien planet without the pesky face huggers risk but with the protective clothing, bleak beautiful landscapes and howling wind may I suggest a short trip to Iceland in February.

For a sharp reminder that the entire country is basically a few volcanos linked by lava fields you should wrap up warm, dodge the thick slippy ice in the car park and head to the  Gunnuhver hot springs.  You stand on the wooden path, they’re very keen you don’t stray from this path what with the risk of falling in, and watch the sulphurous mud bubble away at really quite high temperatures indeed.  (Can you tell I’m not a REAL travel writer?  A real travel writer would pop downstairs to grab the guidebook in her handbag, pausing only to make another coffee all the better to give accurate information about temperatures and so on.  However, I am the girl who aged about 7 finished a short essay on fish with “That’s all I know about fish but if you want to know more I’m sure there are books you can read.”)

The whole place is a Geography teacher’s playground.  In fact we saw quite a few school trips and the teenagers were actually looking up from their smart phones as they experienced tectonic plates, thundering waterfalls, old geysers … all in the kind of scenery  you normally see on a screen at a multiplex in a film starring Tom Cruise being futuristic in a grey boiler suit.  (Oblivion? Yep – much of it filmed in Iceland.)  In fact, the geyser place (damn that guidebook being downstairs) has one that spouts every few minutes which is fun but not as fun as watching a coach load of tourists standing close to it, phones or iPads poised before there’s a collective groan of “Oh I missed it.” while those of us simply using our eyes store the view away in our brains and walk smugly past.

The best bit of the holiday was, for me, definitely the dog sledding.  It’s a close run thing between getting lost in Reykjavik (trans. Smoky Bay.  Can’t remember why – some bloke seeing it for the first time must have seen the hot springs in the distance.  Look don’t get cross I told you where the guidebook is.) on our first night and spinning a “Hostel” like story about how the very polite helpful chap who sent us in pretty much exactly the wrong direction from the hotel we named was actually a stooge in the kidnapping plot. “Yeah, I’ve got the empty pizza box and I’m ambling towards them now.  Get the windowless van ready.”  Blame the booze on the plane but I laughed helplessly if slightly nervously until we were safely back at the hotel.)

So, dog sledding.  It’s every bit as brilliant as you think holding on for dear life as a team of dogs expertly (with a teeny bit of ego based in-fighting) pull the sledge while your bestie and a bearded young man hang onto the back and he shouts “Yip yip yip yeeeeeeeee, Caesar CONCENTRATE” at the top of his voice.  Caesar was having a bit of a grumpy morning culminating in a bit of an impromptu “handbags at three paces” scrap with one of the lead dogs halfway through the trip.  It was all sorted in no time but my inner lyrics to that Christmas favourite will now be “Come on it’s lovely weather for a sleigh ri …..oh god, oh god, they’re killing each other, the noise, make the snarling and yelping STOP, his EAR is hanging off, oh no, it just looks worse than it is …de together with you. DingalingadingadingdongDING.” It’s an assault on all your senses.  The bright morning sun sparkling on the powdery snow, the tingling cold that gets through the thick thermal clothes and makes your face glow, the sound of paws padding and yes, murderous blood curdling snarls from time to time and the smell.  Dear me the SMELL! You see, especially on the first run of the day, your team of dogs like to mark their territory as well as leave a breadcrumb trail as it were in case there’s a snow storm and they need to find their way home.  Except they don’t leave breadcrumbs.  Well there might be breadcrumbs in there but …it’s mainly concentrated wee and steaming poo.  Lots of it.  If watching the back of harnessed dogs have a relay of “hang on a minute lads, it’s my turn …ooh that’s better.” then maybe the romance of dog sledding is not for you.  I found it reassuring and a bit comical.  Of course I fell in love with one of the big bruisers at the back of the pack whose job is to take most of the weight when you first set off.  You get the feeling unlike their ice blue eyed wolf like colleagues that they’re not the sharpest knives in the box but these cuddly brown eyed smily power houses are having great fun even with the permanent view of a close up dog’s bottom in their working day.

Anyway, here he is.  I forget his real slightly unpronounceable name but to me he is Puppyface McStinkybottom.

dogsled

 

Now that I’m back I have my postponed PET scan on Monday.  This means we get a “marker” that will show if there’s any progress in the growth of the cancer cells in my lymph system.  If the nodes in my neck are anything to go by then I’d say by the scientific method of me giving them a prod there isn’t much which would be y’know good and gives me plenty of time to tick more off my bucket list.

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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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