At Sea

ADRIFT

The last month has been really hard and very stressful. I may as well have been floating about the ocean on flotsam – I’ve felt that helpless.  I am not some pink ribbon bedecked Boudica spoiling for a fight; I’m a scared little kid that wants someone to come save her.

Physically I’m doing very well. I’m virtually pain free and to a stranger I must seem perfectly healthy. Following my last scan, I was told that I’m responding to my current treatment regime better than your average patient.  Well of course I am! And I’m mighty proud of myself. In fact, if there was a treatment leaderboard I’d like to think I’m at the top! “Go big or go home!”

Perhaps it was this ‘super patient’ skill that made them offer me an additional treatment, who knows, but it was quite the curve ball! Totally up to me, window of opportunity not open indefinitely, we need an answer – c’mon! Chop, chop!

(For those of you who may be interested, the drug is called Abemaciclib, it’s a CDK4/6 inhibitor. I’ve only recently conquered the pronunciation, so I’m not going to try and explain what it’s meant to do. Google is your friend!)

First time around I took and endured everything that was offered or prescribed.  I wanted to live and that was the treatment goal. This time it’s different. There are treatments aplenty available to me, but none offering a cure, and the possibility of life without any treatment is no longer an option.  Consequently, my choices are measured and defined more by the quality of my life than my longevity. If it’s possible to have both then obviously I want to seize the chance – if only everything was clear cut, but it isn’t.

This is quite a new drug and has only recently been made available in the UK (I think). Apparently, it may have been more use to me if I’d started it in conjunction with my other treatments back in July, but that wasn’t an option then. As I’m eight months in to my current regime it’s possible the drug will do bugger all for me at this stage – but no one knows! I guess I’m a bit of a guinea pig. Could be my chance to shine!

Just two tablets a day, no needles and I can take them at home. Easy, yes! But I feel great right now and the side effects look pretty scary! Extreme diarrhoea, risk of infection, fatigue, to name but three! Why would I want to risk feeling crap for possibly no rewards? It makes no sense, right?

I’ve been so torn. I want the chance to live well for longer, ‘well’ being the operative word. I don’t want to start down the road of feeling rubbish, of being too ill or too tired to enjoy whatever life I have left. Not yet thanks! These are not thoughts or decisions I even want to have. It’s easy to say: “give it a try – what do you have to lose?” or remind me how “lucky you are to have a choice” – well, FYI, I still have stuff to lose and autonomy in this instance has been seriously overrated. I desperately needed someone else to make the decision for me. I wanted a doctor to say: “just take this, it’ll be great, you’ll be fine!”, but they can’t do that. When a drug or treatment becomes available to me, they can tell me about it and offer it, but they can’t give their blanket approval or insist it’s in my best interests – I’m simply given all the pros and cons and left to make my own, informed decision. It’s not easy.

So I asked the opinion of an ex GP, my Macmillan nurse, my parents, my kids, my friends, friends of friends and finally wrote a detailed list of questions, some serious, some trivial – and insisted on meeting with a consultant.

Sixteen days later plus an hour of discussion and I finally made the decision to start taking the drug. What a relief! It doesn’t seem quite as bad in reality as it is on paper (I’m taking the consultants word on this) and I can quit any time I want if it’s making me miserable.  Deep down, I know that if I didn’t at least try it I’d regret the decision.  I took my first tablet on Thursday night and six doses in I still feel ok, although I have stayed close to home (and the toilet).  Hopefully I can cope with any side effects and it buys me some more time.  I’ll keep you posted.

PS:  For those of you, including myself, who hate sentences beginning with ‘So’ – I’m sorry.  It kind of worked for me at the time and I promise not to make a habit of it.

 

#NotDeadYet

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Happy New Year!

I am well aware that I’m a lousy blogger. I either get far too engrossed in everything else going on or I bore easily. Who knows? Anyway, as I consider this a ‘hobby’ of sorts I won’t chastise myself for my inertia.

I have actually been very busy since the demise of poor Willow and even had some wins on the treatment front.

I was pleased to produce an entry to last years 20:20 print exchange at the end of October (see image above) and to take part in a group exhibition in London at the end of November with my fellow printmakers. An exhausting but positive experience. Given that in June I was convinced I wouldn’t be fit to participate on any level, not only did I hammer the printmaking for two solid weeks, I helped get the work to London in my car (ok, so I rode shotgun while someone else drove) and I managed to assist in hanging it all at the other end. I am lucky to be surrounded by a lovely group of artists, all of whom have been incredibly supportive over the last 7 months. Oh, yeah, and I sold a piece of work!

It was also a wonderful opportunity to catch up with a bunch of people from the many different parts of my past and present; though at times I found it overwhelming and often felt quite emotional when I was on my own again.

The blast of radiotherapy to my hip in September continues to hold up (without side effects) and I am running about like a ferret – almost. The pain I had been in, for many months, was at times indescribable and I was pretty certain it would never end. Now, with the worst of the pain under control I feel liberated and consequently am more engaged in my work and able to ‘look after myself’.  That said, I still struggle with fatigue and have bouts of agoraphobia, both of which are immensely frustrating.

I have been asked frequently “how’s the chemo going?” – because I guess for most people chemotherapy is the first thing one thinks of in relation to cancer treatment.  At some point I probably will receive chemo, but for now I’m given 2 shots of an ‘oestrogen receptor downregulator’ (hormone therapy to you and I) and one shot of a ‘human monoclonal antibody’ (or bone density drug) every month. They’re hopefully slowing down the progression of disease and protecting my bones from further damage. So far they seem to be working. Since the beginning of December my treatment has been given at home by the ‘Christie At Home’ team, a fantastic development in allowing me to feel normal and a real godsend as the hospital trips had become increasingly traumatic events. And don’t even mention the pharmacy!!

Christmas, New Year and my (soon) birthday, have all become new ‘milestones’ that I now collect up and tick off as achievements, simply for making it past them. Word in my cul-de-sac, at the beginning of November, was that I only had weeks to live. Quite how any of my neighbours came to this conclusion, without actually speaking to me, is curious. They must be terribly disappointed to see me knocking about still.

 

Kiss of Death (In Memoriam)

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This is a short and rather difficult second post.  On the 8th October we had to make the sad decision to have Willow, my cat, put to sleep.  She was nearly fifteen. By a sudden, cruel, twist of fate, or bitter irony (you decide) she developed pancreatitis which lead to kidney failure and, after trying everything to help her, the vet declared it was no longer in Willow’s best interests to continue with treatment.  She was a pretty little thing, not terribly fond of humans, or dogs or other cats, but I miss her. The upstairs is eerily quiet and empty without her.

I was genuinely convinced she’d live to be at least twenty and during her days of struggling I developed a sort of superstitious notion that if the cat lived, I’d live and vice versa.  Weirdly, the only other time Willow was ill was during my radiotherapy treatment in October 2011.  She nearly died then and it cost me a bloody fortune in vet fees.  I had radiotherapy to my pelvis at the end of this September. Coincidence?  I actually have no religious beliefs and I’m generally too much of a sceptic to believe in fate or anything like that, however, I do find the inexplicable intriguing.  I can only assume that these kinds of thoughts are ‘normal’ for someone in my position and the experience has raised some interesting questions.  I’ve also developed the infantile behaviours of sleeping with a ‘comfort’ blanket and leaving the landing light on.  I’m surprised.

Anyway in conclusion, I have decided that public, wry expressions of my desire to outlive the household pets is clearly the kiss of death for them, so hereon in I shall desist.  There was a moment though … a very brief moment, when I considered purchasing a tortoise.

Tsunami

A Turbulent Sea III

 

I tried to keep a diary when I was first diagnosed with breast cancer back in 2010, but I was quickly laid to waste by the treatment and never managed more than a few lines.  Once I was out the other side I wanted to forget about it all and get on with my life. I was a rather shabby cancer ‘survivor’ and buggered if I was going for a jog in a tutu … ever.  The two years I’d spent worrying about it and being treated for it was enough of an investment in my view.

The treatment never really stopped though. For the past seven years I’d been taking an oestrogen inhibitor every day which thwarted my hair regrowth, caused numerous aches and pains and slowly siphoned away my bone density. I was also still struggling quietly with my body image. The cover illustration, Great Tit, was made at a time when I was quite frustrated by my massacred left breast – creating the work somehow helped make that part of my body separate from me. In the early days, post treatment, I did loads of sketches of ‘breast’ pieces, I suppose in a bid to put it all to bed or give the ordeal some purpose, but only a few were ever realised.  Apart from the annual mammograms and visual reminder I had every time I undressed, I’d begun to feel quite distant from the disease itself so making work about it became pointless and other events further diluted this.  However, my newfound single status caused a resurgence of body angst, so last year, to up my chances in the dating game, I decided to have my reconstructed breast further enhanced. A ‘reconstructed-reconstruction’ or perhaps a ‘deconstructed-reconstruction’ in ‘artspeak’.  Or could it be a ‘narrative of the reconstruction as part of the feminine construct’?  Hmmm.  Anyway, I had the work done in November last year and returned to see the consultant this June for a follow up, which consisted of a mammogram and all the usual chit chat followed by questions of ‘anything concerning you?’  I mentioned I’d been having some major on and off pains in my hip/leg/groin that had left several GP’s and an A&E doctor nonplussed and finally admitted, out loud, that I was worried about secondaries – then I cried!  My consultant cheerily offered me a bone scan, expressed his confidence that it was unlikely to be secondaries, suggested a change to my drugs and sent me off feeling quite chipper.

I received a letter within a week asking me to return for two different types of scan on my right breast. I didn’t understand, I’d been expecting an appointment for a bone scan.  After a frantic call to my breast care nurse, I was told that they had found micro-calcifications in my right breast during the routine mammogram, probably nothing to worry about but with my history it required further investigation. Within a week I was back at the hospital (with friend Skipper in tow this time) and subjected to 4 mammograms – all of which made me cry – and an ultrasound. They were unable to get close enough to the ‘target’ zone so decided this dilemma would be discussed in their weekly meeting and they’d get back to me with a plan.  Still in a state of mild anxiety (complete with the ever patient Skip), I was ushered off to another part of the hospital for my bone scan.

Two days later I was back in hospital and knew, instinctively, that it wasn’t going to be good news. (I’ve learned over the years that when a nurse walks in with a doctor it’s usually a sign of trouble.) My consultant doesn’t muck about with sharing information, just comes straight out with it. “We’ve got the results of your bone scan – it’s not good. You do have secondaries.” Boom! All the air was sucked out of the room in an instant and every sound was amplified. Very weird. I didn’t cry, at least I don’t think I did. I know I said ‘thank you’ a lot. How British of me. ‘Thank you, thank you so much’, ‘yes, of course, thanks’ WTF? It’s hard to describe the shock of hearing news like that.  I remember thinking it was odd that they didn’t seem bothered with the stuff they’d found on my right breast anymore. I did ask, but I can’t remember what was said. I cracked a sweary joke about it that made my mate Beth laugh out loud and then feel instantly guilty and inappropriate, but we needed that release. Without her, I wouldn’t have made it back to the car park, never mind through the rest of the day. I drove home (Beth following) and over a coffee we planned what I would do next. I was in the middle of preparing for an exhibition and still had two stages of a lino print to complete so I decided to focus on that. Keeping busy is usually a great distraction for me.  I drove off to the printmaking studio, set up my gear and printed like a robot for about 2 hours.  It was probably one of my most successful printing sessions yet.  I didn’t want to speak to anyone, I couldn’t. I felt sick and cold, despite the heatwave, and though I desperately wanted to lie down, I felt that if I stopped I’d never start again. Every now and then I had to duck my head to hide sudden tears, as all manner of thoughts were drifting in and out of my mind.  How would I tell my kids? How will I tell my parents? What will I do with my stuff? (yes, that mattered) Will I even make it to my exhibition?  What would happen to my pets? And there it was, the thought that finally tipped me over the edge:  I’m going to be outlived by the cat!

With the bloody cat dominating my thoughts, I made my way to my own studio to carry on with some monoprints I’d started days before.  The drawings were all hanging by strips of tape off my shelves and when I saw them I realised that they were eerily prophetic. It’s another moment that stayed with me. Really struck a chord.  There, finally alone in my sanctuary, I texted the news to my ex-husband and my sister-in-law and cried. Beth and Skipper came and sat with me for the afternoon to keep me company while I worked, but I didn’t do anything. I was bizarrely obsessed with thoughts of the cat, so much so Beth began compiling a list of ‘insanely inappropriate jokes’ that I made, while Skipper sat in a chair in the corner, wearing a pair of sequinned Minnie Mouse ears, crying quietly. It was a surreal tableau. I kind of wish it had been filmed. That whole day felt like a movie. One of those gritty, British, dramas – none of your syrupy Hollywood nonsense. It was also long. Truly, madly, long.  I’d put off going home for as long as possible; I knew two of my children were coming over with their dad and I felt so guilty. I know that sounds odd, but I really felt like I’d failed, let them down somehow. Explaining that, this time around, I wasn’t going to get well, was far from easy but I managed it without creating a scene and I’m grateful that humour has always been our ‘go to’ coping mechanism.

I slept well that night, I guess I was wiped out, but when I woke up the next morning everything hit me like a tidal wave. I was totally overwhelmed by shock and fear and being on my own was suddenly terrifying. I suppose I was having a panic attack as I couldn’t breathe, I shook uncontrollably, and I couldn’t stop crying for a good few hours. I’ve since learned that all my reactions were normal, including the terror of being alone. I’m pleased to say that I’m fine on my own again, most of the time, but it took over two months of nightly babysitters to get me here.