Welcome back folks to, what appears to be, the annual blog! 

I was inspired to take to the keyboard again after participating in my first patient advocacy interview – on the subject of oncological psychology. I was asked to describe my experiences of secondary breast cancer for research purposes, which I so hope will better affect the support given to future sufferers of the disease. It was great to be heard for once and it’s prompted me to address some other things about the illness that a lot of people are getting wrong or don’t understand. It’s mostly the result of public misinformation and the lack of statistics around secondary breast cancer, so I thought it was a good time to spell out a few facts.

A Few Facts

1.Secondary breast cancer is also called stage 4, advanced or metastatic breast cancer (MBC). These are not four different things – they’re one and the same. I always use the term secondary breast cancer or ‘secondaries’ because that seems to be the term more commonly used in the UK. 

2.Secondary breast cancer is not a new breast cancer! It means the breast cancer that was originally diagnosed and treated has spread to other parts of the body. In breast cancer these other areas are typically (but not limited to) the bones, lungs, liver and brain and it is still breast cancer, even though it’s now in these other areas. 

3.Secondary breast cancer is an incurable and life limiting disease. It is treatable, but the median life expectancy for someone diagnosed with secondary breast cancer is only 2-3 years and approximately 31 women die from it every day in the UK. It is not a chronic condition!

It is not a chronic condition!

My breast cancer has spread to my bones. From the top: I have ‘deposits’ on my skull (I guess that means tiny specs of cancer – I keep meaning to ask, but I forget every time); there are extensive tumours on my spine, from top to bottom and front to back, both shoulders, shoulder blades and the left collar bone, also my ribs and sternum, my pelvis and both hips. I’m very well covered!

As a result I am advised not to fall (quite the challenge for me), run, jump, skip, dance wildly, climb, cycle, carry anything heavier than ‘regular’ shopping or do DIY. I am also a high risk for spinal compression injury so I carry a card with an emergency number on it ( I realise this will be pretty useless if I’m found unconscious) and recently there was some concern that my right hip might need pinning or replacing. Thankfully my orthopaedic consultant thinks not – for now at least. 

Now I know I haven’t given so much detail before, mostly because I think it makes for uncomfortable reading, but details are important. I like details. When I was first diagnosed with secondaries I scoured the internet to find someone ‘like me’ – someone with just as many bone mets that was still alive five, seven, even ten years on. I wanted to have some hope, a cancer benchmark if you like. They might be out there, but I haven’t found them yet and there are no stats to go look at either. If someone newly diagnosed with secondary spread to their bones stumbles across this post, I like to think it might give them that glimmer of hope I’d looked for. I’m coming up to 3 years of survival; I’m still well and active, in spite of the fact that almost my entire support structure is affected; I’m still on the same treatment I started back in 2018; my cancer is still stable – according to my last scan – so I’m not doing too badly! The only issue I have currently is my white cells plummeting on and off, which is a pain as it means that one of my drugs will have to be reduced, but even this may be just a temporary blip. 

Red Flag Symptoms

While I’m here, I’d also like to use this post as an opportunity to remind anyone that is worried they may have secondaries to get checked! Do not allow your concerns to be fobbed off or ignored, push for the scans if you have to, and in case you’re not sure what you need to be looking out for, take a look at this infographic created by ‘abcdiagnosis’ that was designed to help recognise red flag symptoms.  

SBC Infographics

I wrote all this without much of a plan and I haven’t a bloody clue how to conclude, so I’ll simply ramble a bit about the drawing I’ve used to illustrate the post. It is surreal and may seem grim – I’m not altogether sure what my intentions were when I made it, but they weren’t at all negative. The fancy title ‘Elpis and the Lepidopterarium’ means ‘Hope and the Butterfly House’. (And yes, it is for sale!)

The little girl is me, holding a golden chrysalis, and she still has a lot of hope.  

“The capacity for hope is the most significant fact of life”

Norman Cousins

 

On Kawara, telegram to Sol LeWitt, February 5 1970, from ‘I Am Still Alive’  1970-2000. Work by On Kawara, photograph by Kris Mckay

 

In case you were wondering!

Exactly two years ago today I was diagnosed with secondary breast cancer. I am still alive and I’m really well. ‘Strong and stable’ and my treatment is unchanged. I feel very differently about my condition too. I no longer feel that the reaper is standing behind a door, scythe in hand, ready to pounce. I feel normal most of the time but I do still have to be careful. The piano move was not my finest moment and I won’t be doing it again. I can imagine my spinal consultant’s face. I won’t tell him.

I still struggle with fatigue and I know it’s something I have to live with, but I’ve found the best way to combat it is to keep moving. ‘Do not sit if you have stuff to do’ is my new mantra! And since my blog, last July, I’ve done a lot of stuff (I confess I do a great deal of sitting also). 

I saw my eldest daughter get married and it was the most beautiful, spectacularly mad and wonderful wedding I’ve ever been to – another milestone; I managed a group show with my pals in 10Strong, took a holiday to Spain with my youngest daughter and finished that book arts course ‘I very nearly didn’t start for fear of not making it to the end’. It’s one of the best things I’ve ever done and as well as learning some amazing new skills, I made some very special and dear friends.

Cleo & James (not my photo, but I don’t have the wedding photographer’s deets)

 

2020 was set to be a busy year too. I had a print fair booked for April or May, another group exhibition planned for June/July, open studios to prep for, a website to work on and a whole lot more.  Instead, I’ve been enjoying lockdown with the rest of the world. I wasn’t going to mention the pandemic, but as I’ve been shielding since early March there’s nothing else to talk about.

At the start of lockdown, when things were looking really dire and very confusing, my initial concern was that I’d be left to die if ventilators were in short supply. I was assured by my consultant that I wasn’t considered a lost cause, by any means, and I’d still get the full care I required. Then it was treatment … what if I couldn’t have my treatment? I knew of other patients with secondary breast cancer whose treatment had been suspended or ceased altogether and this became a more terrifying prospect than Covid 19. As it turns out, my fears have been unfounded. I am terribly lucky to be receiving my treatment from the Christie hospital in Manchester. They have not let me down once throughout this sorry saga and I could not be more grateful, or thankful, for them and for our NHS. I should also add a very special thank you to my son Felix, who has been my personal shopper and dog walker while I’m stuck indoors. I’d be lost without him! 

I realise that my blog is generally upbeat and positive. It’s intentional. I try and live my life that way now, I think it’s important and I really believe that our mind is a powerful tool in keeping us well, both mentally and physically.  I remember too, that when I was first diagnosed with secondaries I was terrified and desperate to find someone in the same boat as me who was doing well. I found a lot of women happy to share their ‘success’ stories, which was great, but the details of their cancer and treatment were vague so I still felt alone. I intend to address this in my next blog, which hopefully will be written in the not too distant future. Stay safe! 

“There is a crack in everything. That’s how the light gets in.” – Leonard Cohen

I was going to write this blog exactly a year to the day I was diagnosed with secondaries, thinking it would be kind of cool. Well, I missed that window by nine days so pack away the fireworks, this is ‘just another blog post’:

A little over a year ago (Thursday 28 June) I was diagnosed with secondary breast cancer. It was a hot summer – a little bit like this one’s turning out to be – and I think I went temporarily insane for at least a month. I disposed of tonnes of possessions (mostly just clutter to be fair) and clothes, thinking I wouldn’t need any of that stuff anymore. I was utterly relentless. My friends and family were the grateful recipients of many cast offs and I was on first name terms with all the guys at the recycling plant.

It was overwhelmingly important that I get my house in order before departing for the afterlife. (Look, I can’t even go away for a weekend without making sure my house is clean and tidy, so an eternal trip is going to be a big deal.) It was also a physical struggle because I was in excruciating pain most of the time and unable to do much to help with the clearance. My kids and their dad provided most of the muscle and my parents, both in their eighties, were bloody diamonds. Thankfully they survived their stay.

When I started treatment at the end of July, I calmed down a lot. I imagine there was a collective sigh of relief the day I declared my garage was empty enough. Then one day I said to my mum, “I think I should buy a hedge trimmer.” she looked at me, surprised and replied, “What’s the point?” And in an act of juvenile defiance, I bought one! A week later I bought a pink foot stool. A new normal had begun.

The past year has been hard, and scary and sometimes very lonely. My house is thankfully still furnished, but I continue to suffer from bouts of anxiety, and agoraphobia and occasional mania. I was always a big worrier, but the things that tip me over the edge now are often really trivial. I cried in Sainsburys recently because I couldn’t open up a plastic bag! I’m not sure I can go back there without a disguise. I have even wished, in gloomier moments, that I would just die and ‘get it all over with’ because knowing that death is inevitable yet having to live with the uncertainty of ‘when’, is a kind of madness that I can’t explain. And before some smart arse says: “Ah, but none of us knows when their time’s up!” –  trust me, it is not the same.

In spite of all the crap, I’m still here, very much alive and making plans. I signed up for a book arts course back in January, even though I worried I might not live to finish it (I’m half way through and loving it), I’ve ‘partly’ booked a trip to Hong Kong at the beginning of November (I have to wait for my next scan results for insurance purposes) and I have plans for a joint exhibition next October, with my trusty Skipper! I’m also definitely going to see my eldest child get wed!

I have so many things to look forward to; I feel well at the moment, I’m making lots of art and I’m living again. I owe a massive, massive thank you to my family and to so many truly amazing friends for helping me get this far. My future may not be certain, but it isn’t quite as intimidating as it has been.

 

 

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.

 

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.

 

This is a short and rather difficult second post.  On the 8^th 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.

 

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.