2021 has seen so much misery on so many levels. Even putting aside the larger global issues – at a personal level I’ve watched family and friends deal with what seems like endless amounts of shit. Covid, cancer, mental health issues and the actions of some very bad people have culminated in an extremely hard year. As the year comes to an end a bit of me just wants to wave it away as quickly as possible and keep everything crossed that next year brings some respite, some joy and much more kindness but I’m also aware that in amongst all the rubbish there were some good bits too.
As I approached New Years Eve back in 2013 I was certain it would be my last. A few months into a terminal cancer diagnosis with my only hope being a blinded drug trial I wasn’t being dramatically pessimistic. Instead I’ve seen in the new year on multiple occasions and it’s impossible for me to not feel grateful for all that extra time. So for that reason this last year – despite all the hardships it’s inflicted on those I love – it’s also been another precious year.
I’ve witnessed the amazing resilience of my boys as despite all the hindrances that covid has created – they’ve just got on with it and made the most of it. As a family we’ve spent years living with uncertainty and so although covid has created a mass of it – we’ve mostly been ok, just kept plodding along and grabbing opportunities when we can.
We’ve celebrated birthdays – with Max becoming a teenager and Oscar turning 16 and Andy and I getting increasingly older and although there have been compromises, and an awful lot of time spent outside – we have still marked every occasion. My Christmas book clubs took place on chilly December nights around fire pits but they were perhaps more magical for it and our official family Christmas day is due to take place on 2nd Jan and most plans that have actually gone ahead have been very last minute. Despite all of that there have been so many achievements amongst my friends with new roles, new jobs, new houses, an excess of new dogs and whilst there’s been less of that for me I’ve baked, and kettlebell-ed and run 500 miles and spent day after day with those that I love.
So whilst I would dearly love to re-write 2021 I can’t and instead I am choosing to focus on the good bits. My ‘not until next year’ double scans (CT/MRI) snuck in early (yesterday) but the results will be next year and so I’m doing my best to keep the anxiety in check and tonight – all being well – I will see in the New Year with good friends and most importantly Andy and the boys – and shall be feeling grateful for another ‘miracle’ year whilst desperately hoping that next year is kinder and gentler than last.
Approximately 4 weeks before scan results. Woke up with a pain in my neck (literally) – really hurt to move my head. Managed to loosen it up a bit as the day went on but the pain kept returning each night making it really hard to sleep. First thought, I must’ve slept funny – it’ll get better. By day two, did I sleep funny or is it cancer? Keep dismissing the scary cancer thought as hypochondria and reminding myself that I probably did just fall asleep at a bad angle. Neck pain eases up very slightly but continues to be really bad at night and so my sleep is pretty rubbish. Constantly battling the two thoughts in my head – ‘it’s nothing, just a weird muscle spasm kind of thing’ with ‘it’s cancer’ that doesn’t really help the sleep.
3 weeks before scan results. During my kettlebell class I find that a lift I can usually do is suddenly impossible. I’m trying to floor press with the heavier of my two bells with my right arm and it’s just not happening – two weeks before I could do it…… My trainer reckons it probably down to my dodgy neck and it must be doing something weird to my nerves. Yes, I think – or, is it cancer?
Two weeks before scan results – decide to take my still sore, but not as bad as it was, neck for a sports massage as the neck pain is giving me headaches and also I really want to be told that it’s doesn’t feel sinister. The masseur does a lovely job and rids me of the multiple knots in my shoulders that have been building and most importantly pinpoints the misbehaving muscle in my neck. She works on it, manages to ease it up a bit and suggests I come back in a week if it’s not better. It remains sore but generally not as sore as it was – feel hugely relieved by the fact that there really does seem to be an explanation
One week before scan results – go fo a run, go for my covid booster. Neck still not quite right but definitely better than it had been. Feel a bit rubbish as the days goes on. By the evening I’ve convinced myself that slightly dodgy neck is somehow pulling at a muscle in my shoulder. My whole back feels a bit uncomfortable and I’m very tired. Rubbish night’s sleep that night – everything just feels a bit wrong.
6 days before scan results – really tired, neck sore, back uncomfortable – very tired. Did I do too much exercise? Could it be a reaction to the booster? Or is it the cancer? Laze around all day feeling pretty worried but trying to justify it then freaking out as that’s what I did way back in 2013 when everything was very wrong and I kept trying to come up with reasons for the long list of symptoms when the answer was the obvious one – my cancer had metastaticised. Take some painkillers – get a better night’s sleep. Five days before my scan – feel much more rested – less tired and far less achey – I’d clearly had a slight reaction to the covid booster as back suddenly feels much better, I don’t keep falling asleep and neck isn’t right but it’s less wrong than it has been.
Today – scan results day. Neck still isn’t right but definitely on the mend and the scan results – all good. Lovely reassuringly stable results. All the worry, all the headfuckery, all the hatred of the hypochondria that accompanies a cancer diagnosis – all a complete waste of time but sadly inevitable. But the results were fine so right now – none of the rest of it matters. Time a for a celebratory cup of tea and hopefully a glass of fizz later.
Timehop memories has once again reminded why September remains so complicated.
After a year of trekking into Barts for 3 weekly infusions, having a nightmare with cannulas and not terribly kind nurses (the two things are intrinsically linked) and eating a lot of celebratory the-cannula-is-finally-in Daim bars with Claire I remember really hoping that I’d done all that was necessary to remain cancer-free. I relaunched my business, I joined a gym (well, a swimming pool) I started to look ahead to the future.
I’d thought my melanoma was caught relatively early it hadn’t been enormously deep, I’d taken the absolute belt and braces approach to treatment with having a sentinel lymph node biopsy, discovering microspread and it being followed up with a full dissection and I’d even pushed for access to a clinical trial in light of lack of treatment options at that time.
To anyone who is newly diagnosed with melanoma now – it sounds as though I’m talking a different language as the landscape has changed so dramatically. Lymph node dissections are far less common as they generally don’t have any prognostic benefit and so are unnecessary and potentially debilitating surgery and there are now a number of really amazing adjuvant treatment options available hopefully preventing so many stage III patients advancing to stage IV. However back in 2011, patients in my situation were probably told – as I was – the cancer has gone, go and get on with life. Thankfully my determination to do whatever I could and my already quite reasonable terror about the cancer re-emerging meant I knew to ask about trials and lo and behold I was told to go and talk to another doctor just down the corridor.
I’ve written before about my experience on the Avastin trial and so won’t go over it again but I do remember finding it tough I also remember the joy of ticking off each of the 17 infusions and desperately looking forward to reaching the end of the trial. Perhaps that’s why my post about treatment being over feels a bit like a punch in the gut each year it pops up. It’s not simply that the trial didn’t work or didn’t work for very long (it’s impossible to be totally sure) – it’s just how radically different everything is now.
Since 24th September 2013 there has been no count down to the end of treatment, no bell to ring on my last session – what I’ve wanted – desperately – is for my treatment to go on and on as it is the treatment that keeps me alive.
When I started on the Enco/Bini in January 2019 I really wanted it to give me at least 6 months, maybe a year and to my amazement I realise I’m on my 33rd month. This is the longest any treatment has so far worked for me. It is utterly terrifying. Each week as I open another box of the pills I now feel very grateful to them for working as well as they have and for so long. As much as I struggled with the handfuls of them I have to take each day I would take ten times that just as long as they keep working. No countdowns to finishing treatment for me.
The version of me who wrote that post – who optimistically hoped the cancer was now behind her – has long gone but this whole living with stage IV thing hasn’t been as horribly short as I’d quite reasonably feared it would be and whilst there won’t be any countdowns I am incredibly grateful to be alive.
So, whilst I really didn’t get my wish about the Avastin ‘doing it’s magic’ I have nonetheless been unbelievably lucky. 8 years at Stage IV – it was an impossible dream that has by some miracle become my reality. Heartbreakingly – one of the comments on that post was from another friend who was undergoing cancer treatment – she died the following year. As I wrote in my last post – this year seems to have seen so much cancer and amongst all those lives and stories I know how lucky I am.
My little boys aren’t little any more – even baby Max is getting amazingly close to overtaking me in height and Oscar towers above me and finds it amusing to pick me up and move me into a different room just because he can. Back in 2013, when I received the devastating diagnosis – I was just approaching my 37th birthday and in a few days I’ll be 45. Andy and I’d hoped I’d be well enough to celebrate 20 years together and next year it’ll be 28 years. We have been extraordinarily lucky. It will never be enough time and I feel as passionately now about taking the belt and braces approach to whatever treatments might lie ahead as I did back then. I will continue to push for whatever I think is best because although 8 years was unthinkable, it has been utterly amazing and I will always want more time.
So, as has become tradition, I shall raise a glass to both absent friends, of which there are far too many, but also to my good fortune, my good health and most importantly all the lovely people who have been holding my hand for the last 8 incredible years.
Last year I managed to get through September with almost none of my usual seasonal gloominess. I’d had good scan results mid-August and a holiday that ran into the first week of September and somehow managed to sail through the month with relative ease. This year, I’ve still got a good scan under my belt (although it was all the way back in July so the next one is slightly looming…. if indeed things can slightly loom…..). I’ve once again been lucky enough to have had an amazing holiday and only got home a few days ago but something about the gloomy grey skies and the possibly the fact that I’ve started the month with a melanoma-related meeting (advocacy not personal) has lead me to feel a touch of the September misery and have realised I’m going to have to work a little harder to stop it overwhelming me this year.
Years ago I came to accept that it was alright to have a wallow and feel a little sorry for myself at this time of year. The anniversary of my Stage IV diagnosis falls on September 24th and back in 2013 this whole month was just grim. I felt increasingly awful and it was becoming harder and harder to explain away the obvious symptoms of metastatic cancer as anything other than what they were. Whilst I’ve stopped feeling guilty or weak that I struggle a little during September it doesn’t stop me feeling reflective. I have learnt a lot of coping techniques to help manage the ups and downs of living with cancer and particularly the ongoing uncertainty but this year has felt very difficult.
We’re constantly being told that one in two people will receive a cancer diagnosis but despite hearing it over and over again it still doesn’t feel real and yet cancer has felt very overwhelming this year both within my melanoma world and increasingly in the ‘real’ world too.
Despite all the improvements that have happened within the treatment of melanoma there have still be far too many deaths amongst my melanoma forum. Every one of them has been heartbreaking. Even within my slightly smaller melanoma world – made up of those I really know – those who’ve I met at conferences and workshops and I count amongst my friends – melanoma has hit hard. For years there has been a core group of us who rejoice in continuing to live with Stage IV melanoma – (not that we’re happy to have the damn cancer but we’re all very happy to still be alive) – and whilst we’re mostly all still here, the cancer has been making far too big an impression. People are suffering with bad scans, progression, problems with treatment, side effects and generally the horrible ongoing threat of the bloody cancer. On top of that there have been several losses outside of the melanoma world – local acquaintances, friends of friends, people who’s deaths causes ripples amongst those I care about.
Every single cancer death feels personal. In that it is so prolific perhaps this is a universal feeling but I can only really speak for me. Every time I hear that someone has died of cancer it hurts, I feel for them and for their loved ones and on a selfish level – it frightens me.
So, here’s hoping the the promised sunshine that is due in London next week arrives and that my attempts to be more proactive about making plans and staying busy work and today’s September blues are simply a little blip rather than a predictor of my mood for the rest of the month. I have once again signed up for the Royal Marsden’s run 26 miles in 26 days challenge and have even convinced/cajoled Andy and the boys that they should match my 26 miles between them so trying to get the boys out running will keep me busy. I continue to be surprised that exercise has become so essential to my life but it definitely does wonders for my mental health.
And, even if the slightly low reflective mood continues I’ve learnt that that’s ok. It’s good to have a bit of time to reflect rather than just being permanently upbeat and positive. Despite the number of years that I’ve lived with this disease it’s still grim, all the fears remain and so I have to keep reminding myself it’s ok to occasionally feel a little sorry for myself and to wish like hell that I’d never been diagnosed with cancer.
10 years ago today the bastard mole that turned out to be a ‘something’ not a ‘nothing’ was unceremoniously removed and so began what has now been a decade of living with cancer. Had that been the end of the story the 10 year milestone would probably lead me to raise a glass and thank my lucky stars but sadly that was not the case.
I generally pay very little attention to this date as it was so trumped by the stage IV diagnosis which came just over 2 years later…and bought with it a whole suitcase full of trauma. However 10 years does feel like it needs some acknowledgement as it has been a decade and it has seen my little boys turn into young men as well as countless milestone anniversaries and birthdays with Andy, my family and my friends.
My memories of 24th May 2011 are far less complicated and upsetting than the September 2013 anniversary but then I guess at that stage I didn’t now how bad it was all going to be. Instead I remember having to drive home with a very numb back as neither Claire (who’d accompanied me) or I had expected them to start slicing, cauterizing and generally taking the situation so seriously.
Yes, I knew immediately it was going to be cancer but assumed it would be early stage. I was confident that I’d had it seen to pretty fast and cancer, and especially serious cancer, wasn’t something I was expecting – it’s rather too melodramatic and that’s generally not been my way.
The months that followed seemed to add layer upon layer of worry as the reality that I hadn’t quite got away with it became apparent. The melanoma was a little deeper than had been hoped (1.1mm) and pushed me into the category of people (at that time) who should probably have a lymph node biopsy as well as a wider local excision. The day of that operation was pretty grim – a very early start, a very long wait and then a bizarre trip to the basement of an old bit of the hospital where I was made to kneel on the floor and lean over a chair so they could inject something radioactive into my back and eventually one of the last surgeries of the day before being rescued and taken home by Andy.
Ever the optimist I was hopeful that this might be the peak of my melanoma adventure but sadly, come August, the results showed that there was evidence of cancer in my lymph nodes. It was tiny – only a micro spread but again at that time – (it’s different now) the solution was full clearance of the lymph nodes in my right armpit. Although no where near as bad as being told it was terminal 2 years later – this was a pretty grim appointment and it was the one that finally allowed it to sink in that melanoma seemed to like me a little too much.
Obviously, all of this then seemed utterly insignificant two years later in Sep 2013 when the cancer was shown to have progressed but today’s blog is very much about the earlier date in 2011.
So – what has living with cancer for 10 years taught me? It seems such a cliche but actually the answer is rather a lot. I suddenly found myself a part of a world I really had never anticipated and as a result, my life is very much not the one I’d imagined.
Cancer is lonely. It’s impossible to understand how a diagnosis feels until you’re given one and even then, everyone’s experience is so different that it’s still quite hard to make how you’re feeling understood – to be fair it’s hard to understand how you are feeling. The loneliness is horrid and it’s something that you have to navigate your own way through by whatever means works for you. For me I’ve found talking about it helps – both to my friends and to a counsellor, finding support within the melanoma community has been essential although that obviously comes with it’s own issues as making friends with lots of people with cancer inevitably leads to lots of grief – literally. Occasionally I feel like I’ve toughened up and it doesn’t have the same impact and then I hear of someone getting to that awful point of no options or another death and it feels as though I’ve been hit by a truck. However, for me at least, the benefits outweigh the downsides. I have made many friends and connections with people both online and in person and knowing people who really do understand the highs and lows of the cliched ‘journey’ has been essential for me.
Cancer can be embarrassing. Not so much the cancer but the drama of a diagnosis and the melodrama of a stage 4/incurable/terminal diagnosis. Possibly if you’ve always been drawn towards histrionics this might count as a perk but that’s not really my way and yet the cancer label is by it’s nature a big, showy thing. It’s an odd juxtaposition that on the one hand I’m happy to talk about my diagnosis and experience – I write a blog, I tweet about cancer – I’m keen that it’s not some awful taboo thing where people only know half the story and the word cancer is immediately synonymous with death but I still find it awkward telling people that I have cancer. Once it’s out there – it’s fine and so actually social media really helps with that as it gives me the scope to elaborate on my experience rather than trying to rapidly close down the conversation with a – yup, cancer, it’s bad but have been lucky and have outlived bleak prognosis, as long as drugs keep working all ok for now….. let’s move on…. For me, as I’ve said before, the most embarrassing aspect is the fact that I was told I had months not years but that was more than 7 and half years ago and whilst I understand the reasons for that, people who only know some of the story must think that either I was being very dramatic or just wrong and had somehow misunderstood my own situation.
Cancer shows you who your friends are Actually I’m not sure that that’s quite what it does – I think, and perhaps this is because I’ve been living in this weird limbo for so long and so have had a lot of time to think about this – it shows you how different each of your friendships can be and that they all offer very different things.
I think since my original diagnosis there are only a couple of people who were loosely in my life who now – due to their total lack of understanding or empathy – no longer are but actually my circle of friends is far bigger now than it was and so cancer, to my surprise, has given me more friends.
What I’ve learnt over time is that they all respond to the various ups and downs incredibly differently and that that, on the whole, is ok. Obviously there is tendency to look to me for guidance in terms of how I’m feeling or what I want and for a long time (I’m talking years) this was incredibly hard as I just didn’t have any answers.
Over time I think I’ve got much better at making it clear that even though things appear to be ticking along fairly evenly, actually I continue to find the cycle of scans and constant fear about the future, incredibly hard and incredibly draining. Alongside this, I think, and I really don’t mean this as a slur on anyone, that I’ve learnt to accept that in the end no one really can get it unless they’re literally walking in my shoes, what it feels like to live this weird uncertain, unsettled version of life but that generally people do what they can to offer the support they can.
Essentially people mean really well. Plus, life is complicated and difficult for most people for lots of different reasons and they already have full lives and lots of commitments mentally and physically and so really people do their best and on the whole they do amazingly. Importantly, people all respond and behave in totally different ways. Some friends are phenomenally good at just letting me bleat on when I’m feeling overwhelmed or upset by my situation, others are amazing at remembering to message when I’ve got appointments, scans, results etc, others might not totally stay on top of the specifics of my cancer timetable but they turn up with flowers and other treats and in less covid-y times, go for drinks, meals and make life fun.
All of it helps. All of these things are what have helped to keep my sane. Although, back to lesson one – cancer is lonely and a lot of what has really helped me is to find ways of managing and recognising the cycles of anxiety myself and to make sure that if support is forthcoming that’s a bonus but that really I can cope with the ups and downs through my own means.
Cancer makes you brave I must be very clear here – having cancer doesn’t make you brave or mean that you have to be brave but for me, finding myself having to face my very worst fears and constantly having to confront the reality of knowing I won’t live anywhere near as long as I’d have liked, means that I no longer shy away from stuff I might have avoided before. So for me this has meant I’ve become engaged in patient advocacy, I’ve found myself speaking publicly with the fabulous MPNE (Melanoma Patient Network Europe) but also somewhat randomly to a lecture hall full of GPs at the Marsden, a load of employees at Ralph Lauren main office, Sky News, BBC news and BBC breakfast as well as being filmed for MPNE and for Pierre Fabre (who make my current treatment). Pre-cancer this would have been unthinkable – I nearly didn’t sign up for my Art History MA because I saw that completing a presentation was one of the tasks plus the fact that anyone who’s known me a long time knows that if you point a camera my way – my instinct is to hide. Yet, both the need to share my experience and make sure that there is an ongoing dialogue about living with a stage IV diagnosis and the fact that for me, there’s nothing more scary than waiting for scan results, means that in contrast how bad can it be standing in front of a camera or lecture hall.
Cancer makes you determined to take control where you can… Well that just rolls off the tongue! Cancer totally disrupted how I thought my life would be and it has stopped me making any thing resembling a long-term plan. So no question of more babies, moving house, running my business as I had intended. I feel panicky when someone tries to pin me down for a date more than 3 months in the future.
So instead, I have focused on the things I can control. Some of it is ridiculous – after a crap scan as well as trying to put all our finances/paperwork in order which is pretty logical and sensible – I also tend to try and ‘fix’ my boys. My boys are utterly delightful and in no way need ‘fixing’ but there are a million things I want them to know, lessons I want them to learn, behaviours I want them to strive for – ultimately I want them to be happy but when there’s suddenly a clock ticking down that becomes quite intense and utterly impossible.
So, as time has gone on I have tried to focus on the things that I can change – I exercise a lot – lots of kettlebell work and a fair bit of running and I love that it has made me feel fit and strong and so whatever shit the cancer is busy doing I am at least starting from a place of strength. It has also been really important for my mental health – not just the often elusive exercise endorphins but actually just being outside – feeling the sun and more often the rain on you.
Cancer is very misunderstood I could probably write for days on end about the many ways in which cancer isn’t properly understood but I shall attempt to limit it to a couple of the issues that I’ve bumped into along the way. One of the most basics and it is the mantra of those with melanoma is the ‘it’s not just skin cancer’. Firstly there’s no ‘just’ about it – your skin is your largest organ and so not somewhere you want cancer. Plus there’s no ‘just’ about it – the fact that my liver and a lot of the area around it is covered in inoperable tumours – all because of a little mole that went a bit wrong – shows that it’s not always a case of cut it out and forget about it.
The various misconceptions about the severity of melanoma has in some ways been one of my biggest battles. For the first two years after my diagnosis (before it metastasised) I felt that most people really couldn’t understand my fear and anxiety that the cancer would return. The research I’d done and the time I’d spent on melanoma forums had shown me very clearly that a stage 3 diagnosis was a very bad thing and I was terrified. Oddly, whilst I would do anything not have progressed to stage 4, I have found that people do understand the severity of it and my fear about the risk of progression has gone. It’s been replaced by a different fear – the obvious fear of running out of options – but it’s one that most people can understand much more than what seems like an irrational fear of the cancer returning.
Strangely, and this ties in with some of my other points, I have been determined to make those around me understand more about my cancer ‘journey’ as it’s so fundamental to what goes on in my head that it’s hard to relate to people who just don’t get it at all. Key to this is my need for people to understand that whilst in many ways time has really helped me learn to deal with my disease that doesn’t mean that it’s got any easier – I just have better methods for handling my fears. So whilst I have long ago lost count of the number of scans I have had, each one has been more frightening than the last and so every single one of them is significant and overwhelming and something that takes up a huge amount of my thoughts.
Cancer gives you perspective Again, this isn’t totally true – I can still get utterly wound up about things that really don’t matter – but by no means as often and it really doesn’t last. My cancer-shaped perspective means there’s a constant reminder that some stuff just doesn’t matter. Occasionally I’ll be totally caught out by something seemingly minor that breaks through my general veneer of doing ok and I can feel quite broken but usually there’s a bigger reason for that and actually it’s not something trivial and so the response is not unjustified. It has absolutely taught me to enjoy the now, to relish the perfect little moments with my family and friends and in many ways it’s the most simple, the most everyday that I love the most – so cuddles from my enormous boys, laughing until it hurts with Andy or Claire, walking in the sunshine…. such simple things that have turned out to be the very best. I have to admit the lovely holidays in Greece have been a total joy too but actually this last very weird year has reinforced my sense of joy in the very simple.
Whilst it’s clear that living with cancer for the last decade has been far from gloom and doom and many good things have happened I still think cancer is shit. Looking back now I feel quite shocked to realise I was only 34 when first diagnosed (and my two lovely giant teenagers were only 3 and 5) and whilst there are many who are diagnosed far younger it still seems terribly young. I still long for an actual cure. No one really has absolute certainty in their life and Covid has been a stark reminder of that for everyone but I would love to be able to feel confident (barring accidents or the end of the world) that I’ll still be alive this time next year and really with my diagnosis there is a lot of hope but there is no certainty. When it goes wrong, when my current treatment stops working, there really is no knowing what other options I might have and I have lived with this disease long enough and have seen more determined patients, better advocates, die because in the end – pro-activity will not save my life even though it has certainly extended it. So I guess another lesson is that we have such a long way to go in learning to treat cancer properly.
Yesterday a friend asked me if I was planning to write a blog post about Max turning 13 and at the time I hadn’t thought to. I feel like I’ve posted so many milestone blogs and so was reluctant to do another but I guess the fact that there have been so many doesn’t mean they are any less significant, important or emotional. My first post stage-IV diagnosis milestone, relating to the boys, was to see them reach the end of their current school years – they were aged 5 and 7 at the time.
I remember a conversation with friends about 3 or 4 years ago when we discussed what horrors might lie ahead when our children became teenagers and I clearly remember that horrible churning feeling of knowing with certainty that it’s not something I would ever see. So the fact that even my baby is now 13 is beyond astonishing.
So much of how Max is now was evident even back when he was little – he has always been ridiculously good natured, very funny, clever and quick-witted plus quite impressively stubborn. For almost a year when he was 3 or 4 he insisted on wearing a shirt, waistcoat and what he called his ‘step in time’ hat – known to others a flatcap but to him it was all about the chimney sweeps in Mary Poppins. Once he started at school he then spent a further year always in a baseball cap and now it’s less about the costumes and more about that crazy beautiful hair.
He is a boy who has always known his own mind and because he’s generally got such a sweet temperament he is a boy who is far too good at getting his own way and flummoxing his foolish parents with his charming (manipulative?) ways and slightly terrifying way with words.
Andy has always described him as the baby of calm – claiming that a cuddle with Max was more than capable of wiping away the worries and stresses of the day. Even now, a Max cuddle is a beautiful thing.
His creativity has unfolded in more recent years – firstly with the drawing and in the last few years he has demonstrated once again how much stronger Andy’s genes are than mine (phew) – by teaching himself the piano and now the guitar too.
So even though Max at 13 is in many ways very similar to Max at 5 I have loved every single one of those years and as well as laughing at the fads and phases have loved watching his sense of self and his confidence as he just becomes a little more Max every year. I am so happy to have seen so many ‘impossible’ years.
So today I get to look in amazement at my ridiculously grown up boys and it’s impossible to feel anything other than unbelievably lucky. Lucky to have seen my boy finish many school years, have many birthdays, pass through many stubborn clothing phases, learn more and more instruments and generally amaze me with his loveliness.
Goodness – Timehop and FB memories are at it again and they’ve just reminded me that 7 years ago today I had my first good scan results. The slightly blurry picture of Claire and Andy and our 3 glasses of celebratory champagne make me smile as much today as they did back then. After all the trauma, upset and worry of the previous months – the stage IV diagnosis, the decisions about treatment, the change of hospital, how ill I was, the crazy number of painkillers and hospital appointments, the wait to get on the trial, the uncertainty about whether the trial drug would work – that first scan result was unbelievably exciting.
It showed that whatever I was taking (it was 2 years before I found out it was Ipilimumab and Nivolumab) was working. The tumours had shrunk by nearly 50% and the fact that I was feeling better wasn’t just down to the pain management regime but I was actually feeling better. It was the first bit of hope after a really dreadful few months. It was an amazing day.
And now 7 years later I have just had my first of two Astra Zeneca Covid vaccines. I am incredibly pro-vaccine and struggle to have any understanding of anti-vaxxers but I have to admit that the possibility of this vaccine has made me nervous. In part it’s the very simple fact that the reason I’m so high on the priority list is down to the damn cancer. In so many ways I’m the fittest and healthiest I’ve ever been – (just run 36 of my 40 miles for the Marsden this month) and I’m sure it’s good for me to be staying well – but what it doesn’t do is make the bastard tumours which persist in lurking around my liver disappear and so ‘healthy’ probably isn’t really a very good description of me. Like most people, I don’t like to think of myself as vulnerable – but stage IV cancer means that I am and Covid has just kept on hammering that home.
I wasn’t worried by how quickly the vaccines were developed as there’s been plenty of explanation about how that happened in terms of research into corona vaccines already being underway alongside the massive speeding up of processes that are usually unnecessarily slow. I’m not worried about side effects as I’m guessing if they happen at all they’ll be short-lived and no where near as scary as the ones I’ve accepted alongside my various drug treatments (at one point I signed something that had ‘death’ as a possible side effect). My concern was simply that right now (until anything shows otherwise) my Encorafenib + Binimentinib pills are keeping my cancer safely under control. I have, for the last two years, been reassuringly stable and I am terrified of anything that might mess with that.
I have, obviously, talked to my oncologist about my concerns in the hope that there might be some delightfully reassuring data about the combination of covid vaccines and targeted treatment…… Funnily enough, as has so often been the case, there is no data. Instead I have had to be reassured by the fact that Covid would likely do me more harm and mess with my treatment far more than the vaccine.
Strangely – now I’ve actually had it I actually feel relieved. I feel very lucky to have had a vaccine so early in the rollout. I feel really bloody impressed that vaccines have been developed and produced within such small timescales. I am incredibly grateful to all those who have made it happen and now just have my fingers firmly crossed that the rollout of the vaccine will continue apace and soon everyone who wants and need one will have one.
Plus having, by total coincidence, had my vaccine on the same date as that first good scan result back in 2014, I feel really rather positive about it all. Hopefully in the not too distant future glasses of champagne will once again be raised with friends and not via zoom and something resembling normality with return.
Facebook memories have just reminded me that it’s two years ago today I collected my first cycle of Encorafenib and Binimetinib. I remember being utterly daunted by the thought of 12 pills a day but more than that I remember the absolute terror that they might not work. They remain my last approved treatment option.
At the time I was desperate for them to work for a few months and if I was lucky maybe a year – I really couldn’t have dreamt they’d still be keeping my cancer in check two years later. As has so often been the case in the last 7 years – I have been very lucky. The side effects have been minimal – they caused some nausea and dizziness at the beginning but that wore off, they then caused some joint pains but that only lasted a few months. The only really long-term side effect is the comedy impact they’ve had on my hair. Forty-three years of dead straight hair and now it’s ludicrously curly and that’s on a good day – generally it resembles a frizzy haystack. It’s not good but in that I’m still alive it’s not really something to worry too much about. My family have almost stopped laughing at how ridiculous I look each day – so that’s progress.
Whilst I know I’m incredibly lucky that (fingers very firmly crossed) targeted therapy is keeping my tumours stable, two years on the pills is proving to be a cause of rather a lot of anxiety. Clearly living through a global pandemic is not conducive to feelings of wellbeing and calm but alongside all that worry, I’m very conscious that I’m currently feeling very stressed by my cancer and by my treatment.
Two years is the longest I’ve ever been on active treatment in one go. I’d desperately hoped to get to two years on Pembrolizumab but didn’t get there and instead I began to ‘fail’ treatment after 19th months and that was the end of the immunotherapy dream for me. Any lingering hope that I’d had that immunotherapy might be the miracle that might allow me to survive melanoma was wiped out by the bastard tumours growing whilst on treatment.
I’ve always been clear that targeted is generally not a durable treatment option. This probably has a lot to do with with when I was first diagnosed when generally people were just given the Braf inhibitors and not it’s accompanying MEK inhibitor and it was thought to last approximately 6 – 9 months. Thankfully, the treatment has improved massively and the combinations of these pills seem to have much greater durability but that hasn’t managed to stop my abiding sense that getting to 6 months was good, a year great and anything after that I’m clearly pushing my luck.
So, the fear is very much back. I keep reminding myself that I have many friends who have been on the equivalent drugs to mine for years but there’s one thing knowing it and another believing that it’ll be the case for me. Covid adds further layers of fear to the whole situation as there’s no question that alongside all the other terrible things it’s doing, the impact on cancer care is dire. Now is simply not the time for me to hit a wall with treatment and need to pursue different options. It’s not a time for innovative trials, it’s not the time for regular hospital visits – as we keep being told it’s the time to stay home. So, with a scan on the horizon – a scary one with CT plus brain and spine MRI, the fear is really quite bad.
In terms of staying sane – I need to listen to my own advice which has worked pretty well for me for years which is just to plod on one day at a time. Not worry about what’s ahead an instead focus on each day and make sure there are nice things contained with in it. My scan isn’t even until next month so really no point fixating on it yet.
So it’ll be therapeutic jigsawing, mindless tv watching, lots of painfully overenthusiastic cuddles from my giant boys, slightly obsessive exercising and lots of focus on what to cook and eat each day. Whilst it all sounds very small it’s generally more than enough. The running is proving to be a really good distraction. Have signed up for the Marsden’s run 40 miles in January and that’s keeping me busy as it means getting out for a very chilly 5k every other day. I managed a pb of under 25 mins on 1st Jan which was an excellent start to the year and plan to go a little slower for every run from now on!
So for now, it’s just a question of practicing what I preach and focusing on the now and hoping that eventually the fear will settle back down again like a well behaved fear!
You’d think after all this time I might just let the anniversary of my stage IV diagnosis slip by – after all I’ve made it far beyond the ‘months not years’ of my original prognosis. It might appear a little unseemly to be dwelling on something so grim year after year and yet as the 24th of September approaches I remain astonished that I am still here and it’s important to me that I acknowledge how amazing it is and how lucky I have been.
Unless you (or someone you are very close to) have found yourself sitting in a doctor’s office being told that you are dying it is very hard to comprehend how difficult it is to just simply accept that you have been lucky and move on. My experience of being on a melanoma forum in the run up to my diagnosis was that time and time again people diagnosed stage IV mostly died within a year. Plus – my ‘luck’ has always been combined with a great deal of proactivity regarding my care and a phenomenal support network that have helped me through the troubles of living with stage IV cancer.
So really, there is no moving on – I still have Stage IV cancer, none of the various treatments I have had have got rid of my tumours and nothing has worked for more than a couple of years and so there have been many more ‘bad scans’, difficult decisions, sleepless nights and too much contemplation of my mortality.
However, today it has been 7 years since that truly horrible day and that is astonishing.
My boys were 5 and 7 back in 2013 and now they’re 12 and 14. This last 7 years have allowed me to experience so much more of their lives than I had dared to dream and my boys have astounded me with their uncomplaining resilience, their humour, their creativity and probably most of all their extraordinary love.
I have seen so many milestones – so many ‘impossible’ birthdays, them hitting double figures, finishing primary school, starting secondary school, Oscar reaching his teens and now looking down at me as he rapidly heads towards 6 foot. I have a real sense of who they both are as the years have revealed Max’s extraordinary creative talents in both art and music and Oscar’s less accessible (as I’m far too old to understand) but nonetheless great accomplishments with film-making and streaming for his youtube channel. They really are proving to be very lovely boys who I am just so pleased to have really got to know.
Whilst mindfulness has never really been for me – I have become very adept at taking stock in the moment and just feeling unbelievably grateful for those simple happy moments that my family give me. It’s often the basic stuff – sitting enjoying a meal together, cuddled up watching a film or – more fancy – the unadulterated giddiness of my boys when we arrived at our beautiful villa in Lefkas.
Whilst metastatic melanoma is a shit hand to be dealt it has taught me to savour the moment and there have been so many amazing moments since 2013. When I signed up to the sinisterly named Checkmate 067 trial my hope was that it would give me a little longer – I had no idea that it would give me a couple of years and the same drugs would then give me another couple of years and that time would then allow for development of other drugs which are now working their magic for me.
I started on the targeted therapy Encorafenib and Binimetinib back in January 2019 and I’ve just started my 22nd monthly cycle – this is the longest I’ve been on continuous active treatment since my diagnosis which is a rather odd record but one that comes as a massive relief. There is still no plan b for what I do next so it would be impossible to put the fear of cancer aside and just get on with life but 7 years is enough time to learn to live very happily (most of the time) with that degree of uncertainty . There are elements of it that still feel exhausting – the anxiety cycle that comes with scans, the need to reiterate the fact that I continue to live on borrowed time – but generally I have got my head around my reality.
I have developed a number of ways of coping and to my amazement exercise has been key – and this whole period of shielding, lockdown and this weird in-between has been hugely helped by throwing my kettlebell around (under instruction) and in the last few months lots of running. I committed myself to running 26 miles in 26 days for The Royal Marsden – although due to being away I started late so only had 17 days but I’ve really enjoyed the discipline of running most days and whilst my challenge would be a doddle for many people it isn’t for me and I’ve taken great satisfaction in slowly clocking up the miles.
I hit the 26.2 miles at the beginning of the week and will continue until the 26th just to see how far I can cover in my somewhat random 17 days. I’m currently up to 34 miles do hoping to hit 40 by the deadline. Cancer has taken so much away from me and clearly shown how little control I have but exercise provides me with a semblance of control and feeling fit and strong when you’re constantly aware of the resident tumours has proven to be really important. Plus I am always pleased to be able to give a little back to The Royal Marsden as it has ended up doing so much for me.
Key to learning to live with stage IV melanoma has been the amazingly supportive network I have around me. My family, who have lived this thing every step of the way, have been amazing despite how hard the ups and downs have been. I will always hate that this awful diagnosis happened and that it didn’t just shatter my imagined life but it disrupted all those around me but especially for my family. I always tend to focus on the boys as I guess they are who I feel most responsible for but I know that that awful day in september 2013 also changed the course of the lives of all my family.
My friends, regardless of their own busy and complicated lives, have learnt to follow my lead in terms of boosts when I get down and celebrations when things are good. Most importantly they’ve let me talk and they’ve listened to where I’m at in my messy head. I have learnt to see that everyone deals with this crap differently and I now recognise that some people are amazing at remembering the key dates, appointments, scans, anniversaries and some are wonderful at just surprising me with beautiful flowers, thoughtful surprises, lovely food, a well timed cuppa and all of them have shown me in their different ways that they care. Slowly, slowly, over time I am learning to accept that my having cancer doesn’t simply make me a burden or an inconvenience but that as with my family, the diagnosis hit my friends very hard too. Despite how annoying I can be – they seem to like me!
So, 7 years! Usually I really struggle with September and despite so many coping mechanisms I get hit by terrible gloom – grief for the life I didn’t get. This year has felt different. I’m not sure if it’s down to being on holiday for the first week, the fact that I had my ‘September’ scan in August this year so got to go into the month knowing I’m currently fine or that the sun just keeps shining but actually I think that it’s probably down to the massive uncertainty caused by the pandemic. It simply doesn’t feel appropriate, even subconsciously, to be wallowing in the what ifs when Covid has shaken everything up and created a dreadful universal panorama of uncertainty. Life for everyone is proving to be very difficult, we all watch the news with dread, worry about the future both in terms of controlling the virus and managing the economy, await further announcements about what we can and can’t do, become enraged by the poor handling of the situation and generally miss our old lives.
Within the current covid context – 7 years at stage IV just feels like less of a headfuck and more a happy miracle this year and years of living with stage IV cancer has taught me to absolutely relish the good moments, make the very best of what you have, never plan ahead and just live each day as it comes and really right now – that’s more than enough. I shall be 44 in a couple of days time and that’s a really splendid number, a ridiculous milestone for someone who was just about to turn 37 when they were told they only had months. So, whilst I am so sorry that life is really rather universally shit I shall be celebrating my good fortune – the fact that I have exceeded my grim prognosis by such al long time and that that time has given me so many wonderful and precious moment with all my nearest and dearest.
No pressure – but here’s a link to my Just Giving page for anyone who’d like to a make donation.
I didn’t mention it in my last post as I don’t think I really believed we’d manage it, but pretty much on doctor’s orders, within an hour of getting my scan results, I booked a two week trip to Lefkas.
After cancelling trips to Scotland, Cornwall and Venice I had totally accepted the idea that we wouldn’t get our magical summer holiday this year. After all – what sort of idiot shields for 5 months and then gets on a plane in the middle of a pandemic……. well, it seems that I’m that sort of idiot. Honestly, I still feel like it was a pretty odd thing to do but what was just a tiny glimmer of a possibility when I realised that there was a perfect two week window between my scan result appointment and when the boys were due back in school, became a reality.
We’d mentioned to the boys that we were considering going away but explained that there were a load of obstacles that would need to be overcome. I was concerned the UK would be in total lockdown, that Greece would close it’s borders, that Greece might be in lockdown, that it would become apparent that covid spread like mad on airplanes, that there’d be nothing available, or if we got as far as getting to Greece we’d find ourselves having to self-isolate because someone on the plane tested positive. The biggest of all the obstacles though was whether or not my scan results would be ok. If they weren’t – not only would we all have been very upset but there is still no obvious next treatment step for me so things would have been very uncertain.
Thankfully we got incredibly lucky and everything fell into place. What had felt like a bit of a pipe dream became a reality. So the final hurdle was simply whether or not we felt like it was the right thing to do – was it safe, was it responsible. In the end the decision was made with the giddy high of good scan results, the approval of my doctor and the realisation that when you live with stage IV cancer, putting things off until next year is a very risky strategy.
So, six days after we booked our holiday, we flew off for an amazing two weeks on the beautiful island of Lefkas. In terms of how safe it felt I’d say that the airport and the plane felt fine for us in that everyone wore masks and there’s hand sanitiser everywhere. It wasn’t perfect as the plane was full and suddenly being that close to so many other people after months of shielding felt strange but for us it was worth it and then joyfully Lefkas really did feel safe. I’d been keeping an eye on the infection numbers there and as far as I can see they’ve only had a couple of reported cases during this whole pandemic and nothing at all for a few weeks before we arrived. Whilst the numbers in Greece as a whole have increased it feels like nothing compared to what’s happening in the England and so for us it felt wonderfully safe. Everyone wears masks in the shops and all the staff in shops and restaurants do too plus there sanitiser galore everywhere. So we were able to relax. The villa was stunning with beautiful views of the sea, the sea produced the amazing waves I’d remembered from last year and it was every bit as lovely as I’d hoped it would be.
My boys, like Andy and I, are very used to living with the uncertainty of my cancer – they don’t really know anything else as it’s been present for so much of their lives. Neither of them ever say very much about it instead they just carry on as normal and it’s only on reflection I realise how perhaps their reactions to some things are shaped by the ever present cancer. Clearly I love going to Greece but more than anything I really wanted the boys to have a proper holiday. They had to spend months shielding because of my cancer and they did so without complaint – they were amazing and throughout all of it remained sweet and good natured and just got on with it. I am more than aware that covid has been indescribably tough for many people and for everyone it has been life-changing so my own trials and tribulations pale into insignificance compared to so many but getting away was something we could do and I am very pleased that we did it. The boys are finally returning to school today and they do so having had some proper time out of the house, some space to run around and swim and a couple of weeks of something that felt quite normal.
The other joy of our holiday is we only got back on the 6th September which means before I knew it a week of my dreaded September had already passed without the usual gloom setting in. For years I’ve had scans during September as that’s the way they always fallen but the 12 weekly thing meant they landed early this year hence my August scan. So for the first time since 2012 I get to go into September knowing that right now everything is OK. It’s a strange feeling – it’s lovely and I’m hoping that it makes this month easier than it has been in recent years – but it does feel strange.
At the moment I don’t feel all unsettled and miserable instead I feel rather thoughtful. I don’t think the month will, or probably even should, just slip by – I think that part of what gets me through the rest of the year is having a few weeks to reflect on september 2013 and just keep processing all that changed and what it all means.
It feels right that I should think back to those frightening weeks and months when my cancer became something that was never going to go anywhere. I cannot help but think of some of the other patients that I met at the hospital and on the forums who were also stage IV, some who started the Checkmate 067 trial at the same time as me. It’s frightening to remember how many there have been – friends I chatted to in the waiting rooms, others who I corresponded with online – who died. For many, the improved treatments came too late but sadly, and in some ways more worryingly, for many, the treatments simply didn’t work for long enough – if it all. Melanoma remains an incredibly nasty cancer. There will never been any space for complacency. So instead – whilst it’s possible – it’s just a question of seizing the moment and as cliched as it sounds – trying to live your best life.
lucysmelanomaadventure 