2016: The Shit bits

Spoiler alert:  this blog does not contain good cheer.  I’m still humming and hawing about whether to publish it  but I promised myself that the blog would be honest, so here goes.

Last Tuesday, a mere handful of days away from my second “cancerversary”, Chris and I were informed compassionately but professionally that Regorafenib isn’t working and that there is now no perceived benefit to continuing with treatment.  This was the last drug available to me and was at the epicentre of the hope we had left.  Since last summer, we have been all too aware that the outlook was not rosy and we have always anticipated that 2016 was not going to be an easy year, but I’d hoped we would continue as we had been for a while longer.

Everybody is familiar with the metaphors of cancer, the vocabulary of warfare: battles! struggles! fight! survivors!   It’s easy, right?  Makes sense and we can all get behind the most worthy warrior, lend our support to the deserving victor.  I never really embraced that war terminology, although I am always grateful for the support of the many people that would gladly form an army for me.  However, way back in the mists of time (2014), when I was recuperating from surgery, my mum’s minister visited me at home and we had a long discussion about what I was experiencing.  It’s fair to say that I struggle greatly with the notion of God  (although, hypocritically, I will gladly accept all prayers     If you are a prayer and feel inclined, feel free to pop me in there!)   but the minister is a gentle and wise man, whom I like very much and whose ability to talk about spiritual matters without ever actually mentioning the “G” word, I admire immensely.  Anyway, I remember him saying that battle analogies can be tremendously unhelpful, as the energy required to “fight”  could be better directed elsewhere.  And every fight ultimately has a loser.   So I have seen my treatment more as a kind of cat and mouse game where cancer and I coexist but I am supposed to be the Roadrunner outwitting Wile E Coyote (neither cats nor mice actually, but you know what I mean), Jerry cheerfully outsmarting Tom.  Somewhere along the way the roles got mixed up. This displeases me.

However, I am not a victim, I am not a warrior, I am not a hero, I am not a failure. I am an ordinary, young(ish!) woman with flaws and merits, who got a disease,  too resilient and probably diagnosed too late for me ever to really have stood a chance of eliminating it forever.  I am not the loser in a battle that I didn’t fight hard enough.  The last two years has seen me under the knife for major open-surgery, complete 18 cycles of intravenous chemotherapy and all the accompanying side-effects that I  frequently thought I could endure no further, followed by 4 cycles of a highly toxic oral treatment that could have caused complete liver-failure, taking me right up to the 27th January 2016, when I discovered the disease is still progressing.  Through it all, I did my best to live life to the fullest (whilst drinking tea and scheduling in plenty of naps. I’ve never had a better excuse for my congenital spectacular laziness).     I’m not Boudicca, I’m not Joan of Arc, I’m a mum (how the hell am I going to tell my beautiful children? Seriously. How?), a wife, a daughter, a sister, a friend who wants to stay alive.   And that’s what I have tried to do and what I will continue to do.  At the moment, I am more or less in hibernation, improbably shocked and trying to keep a grasp on hope (trials? alternative mumbo-jumbo? Feckin’ kale?)   but I intend to be back out in the world very soon.   I do hope you’ll join me for some fun when I do.  I think I can still do fun!

(At my insistence, I was given a rough prognosis of my life-expectancy.  It’s not good, but one of the splendid bits of being such a lazy-bones is that I am utterly shit with deadlines. This combined with a strong dislike of anybody telling me what to do and a wee streak of relentless optimism gives me hope that I’m going to smash it!)

Thanks for reading. Go and do something that makes you happy now!  And that’s an order.

J xxx

 

 

 

 

 

 

 

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2015: The Rubbish Bits. (Oh Shit! continued)

On the 19th November 2014, Chris and I headed off to the Murrayfield and the Big Orange Chair of Doom for what we confidently assumed to be the last time.   We were a heady mix of extremely weary (we’d been at a gig in Glasgow the previous night – Jack White  – and hadn’t got home until late) and euphoric, so very euphoric, that after 4 unsuccessful cycles of Capox chemo followed by 10 successful but gruelling cycles of Folfiri and Avastin, finally chemo was coming to an end.  Since April, body and mind had been battered relentlessly by the “bad medicine”, which was, paradoxically, also the good medicine.

The euphoria soon subsided though as a burl in that orange chair, hooked up to Infusion Central is pretty nauseating even if it is the ultimate session.  Got through it by fiddling around on Facebook and snoozing with a big inflatable hot thing.  (Minds out of the gutter, people!  It’s a blanketty type of thing.  I want to call it a ted but that’s  the name for those alluringly sexy surgical stockings isn’t it?)  Medical people amongst you will know the technical term.  I shall persist in calling it a big inflatable hot thing.  Anyway, I was ceremoniously propelled out of the Oncology Day Centre by singing and dancing nurses (gorgeous nutters!).  Last infusion done. I hate that place with a passion, but, God, I love those nurses!   No champagne to celebrate on my return home, just a bottle of toxins affixed to my chest, some Haribos and a nice long appointment with my bed.

This is my Facebook status from that day:

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A couple of weeks later as the side-effects of the last cycle started to abate, it was time to get on with LIVING!  Sounds easy, eh?  Little was I prepared for the monumental slump followed by the devastating collision with a wall of fear that (I now know)  accompanies the end of cancer treatment for many (most? all?)  patients.

Chemo feels rubbish. Really, really rubbish.  For the seemingly endless months and months I spent on treatment, I didn’t really appreciate the comfort that those ferocious cytotoxic medicines provide.  As I willed myself through treatment, little could I have imagined that it its end I would actually miss it.  Time is marked out during a chemo regime:  infusion days, blood tests, the days you know will be bedbound, the “good week”.  Above all, while you’re being pumped full of poison you know that you are doing something to batter the wee hooligans roughing you up from within.  And you have a medical team cheering you along.  In retrospect,  chemo with a curative (okay, in my case curative-ish) intent is a strange comfort.  Then it finishes and you are flung back into reality from the chemo-bubble , expecting to skip forward through life.   Except you don’t. Because all you can think of is “what the fuck just happened to me?”   I cried. Often.  I was angry. Often.  I was disorientated. Pretty much always.

Not long after my treatment ended, I started going to a course at the Maggie’s Centre in Edinburgh.  (I expect I will spend much of my blogging life effusing about the wonder of Maggie’s.)   I can’t actually remember how I ended up there.  Back when I first found out that I would be having chemo, we visited the centre, on the recommendation of my oncologist, for help with how to talk to children about treatment and its side effects  and I’d been to a “Look Good Feel Better” session but I didn’t really make much use of Maggie’s until chemo finished.  Anyway, somehow I ended up back through the  centre’s welcoming door. I was signed up  for”Where Now?” a six week course, focussed on processing your cancer experience and moving forward from treatment.

One cold December morning, I found myself in a room with 6 other women who had recently finished various treatments for an assortment of cancers.  Cancer is a bit like a big tin of Quality Street (but far less festive.) It comes in all sorts of flavours, but unlike Quality Street there’s no delicious green triangle.  Every variety is the crappy coffee cream that no right-minded person would ever choose.    I sat down, took a sideways glance at the lady sitting next to me, who had a tear rolling down her cheek and I started to cry.  But it didn’t matter, or feel embarrassing, because everybody else was crying too.   And so began one of the most emotionally-draining and ultimately empowering  experiences I have ever had. (I dubbed “Where Now?”, “The Greetin’ Group”*  but for some reason it didn’t catch on with their marketing peeps).  I won’t write too much about what happens in the group, because, as with all the best rock legends’tours, what happens at Maggie’s stays at Maggie’s.  Suffice it to say that by the end of the course, I was feeling more emotionally steady and ready to return to work.  (I had also made four amazing friends that I admire immensely and love to bits.  They are rock’n’roll legends! And daft as brushes.)

I only work two days a week and was amazed at how much I was looking forward to getting back to that routine.  Having been approved (just) for return to work by Occupational Health (“I can see that you’re a bit emotional”), I started a phased-return of half days and was delighted to be back into the workload and office banter (Maybe not so impressed by the colleague who referred to my 13 month medical ordeal as a “holiday” but he was mortified when I called him on  it.  Did I mention that I am way more vocal and opinionated than I used to be?)

However, I had only been back at my desk a couple of weeks when cancer struck back (persistent little fecker.)  My first CT scan post-treatment showed that the lung mark had grown.  I was devastated but my oncologist assured me that it would be whisked out.  He did suggest that I also go for a PET scan, which uses glucose to show where cancer is active and can pick up smaller growths than a CT scan can (poetry!).  So off I went to the Infirmary for what proved to be rather an exciting scan.  In preparation for your whirl in the photographic equipment they have to give you radioactive super-powers.  To do so they give you an injection from a mighty, metallic and frankly bloody HUGE syringe. Which is kept locked in a metal case.  It’s all very James Bond.  A nurse comes into the tiny cell within which you are contained.  They point you at the shabby copy of Woman at Home magazine provided for your enjoyment, administer the injection and hot-foot it out of the room.  And by hot-foot it I mean they leave that room like Usain Bolt. I have never seen a fellow human being move so speedily.  I lay back, idly pondered whether I would use my new-found radioactivity for good or evil, whether any superheroes or indeed supervillains had a belly as big as mine and if there were any more figure-flattering costumes than unitards (could I carry off a cape worn to the front? It could be a trademark.),  had a wee doze and after a while was deemed safe enough to be taken off to the scanner.  I like to imagine at that point I had a Ready-Brek glow about me.

The usual interminable wait for results ensued but when they came through they were pretty positive.  Nothing new to see and the tracer didn’t gravitate to the lung nodule, so there was, an admittedly minute, chance that it might not be cancer at all.   Anyway, we were all systems go for lung surgery.  I’ve been fortunate to have had most of my treatment privately but  this surgery is not available at my private hospital and so began another NHS wait.  I am a huge fan of the NHS and have often felt guilty that I have had the luxury of private healthcare throughout this experience, but balanced against that is the fact that I’m a mum and I want to be around for my children for as long as possible and to that end, selfish though it may be, if I can make something happen fast, I’ll grab that chance.  Waiting lists for NHS surgery do not move fast.  I eventually had a consultation with a cardiothoracic surgeon who had looked at my scans and was happy to go ahead, with the condition that I be scanned again as several weeks had passed since my last trip through the Magic-Seeing- Inside-You-Donut.  Once the results came through it would be a case of getting an appointment for the excision in in the next couple of weeks.

Except that when the results came through there was unexpected Bad News.  There were new growths showing on the peritoneum (who knew I even had a peritoneum?  Anatomy is not my strong suit) and I was no longer considered suitable for surgery.    That “palliative” word that had been floating around had become the reality.  Peritoneal metastases are tricky little rascals – they are inoperable and can’t be radiated due to the organs contained within.  They are also tricky to blast with chemo, but that was the only option other than leaving it all alone and seeing how it progressed. I don’t think so!

And so it was that I found myself back in the Oncology Centre undertaking what I always said I would never be able to go through again.  4 cycles of Folfiri later, my mid-way scan revealed that the lung nodule was still growing and worse, there were further new growths on the peritoneum.  No point in continuing with chemo.   We’d been through some pretty bleak times, but this was the worst yet.  We were advised to start thinking about preparing our children for, well, we all know what for.

BUT we were not completely out of options.  We could look for a clinical trial or there was a new drug, Regorafenib, very recently licensed, which I was warned had some potentially lethal side-effects and some less-dangerous-but-pretty-unpleasant-anyway side effects.  It’s not licensed for use on the NHS but after some tussling and, I suspect, some pressure from my onco, my insurance agreed to cough up for 7 months of the drug.

I’m currently on my 4th month of Regorafenib, my first scan showed no change to the peritoneal tumours, a tiny bit of growth to the lung nodule (dodgy camera angle, I have decided)  and, importantly, a significant drop in my CEA levels which are tumour markers.  I’ve had very few side effects and those that I have experienced have been very mild.  So, six months on from a hopeless prognosis, I’m doing better than I was then and I’m still in the game!  Next scan next week, so crossing fingers and praying to the universe for similar results.

Wow, I have certainly wittered on here. Apologies for such a lengthy and not awfully uplifting post.  I promise some “funnies” soon.   If you have read this far, I thank you for your time.  If you are reading and on your own cancer journey, I wish for you to keep hope in your heart even when hope seems impossible.

* For any non-Scottish readers, greetin’= crying.