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.