10 years at Stage IV!

For months now I have been trying to work out what to write for today’s blog. Whenever I’ve been out running, when I can’t sleep, when I’m pottering around I’ve been trying to plan the ultimate “I have been living with stage IV for 10 years” blog post.… It is such a ridiculously enormous milestone and as such it has loomed large for months. It feels impossible to sum up what it means and at the same time I’ve found it really hard to plan what to write as even the act of thinking about it feels like I’m being complacent in assuming I’ll make it to 24th September.

I worry that people will think they’ve already read a 10 year post from me – but that was 10 years of living with cancer and this is 10 years of being Stage IV. Anyone who’s experienced cancer or has lived closely alongside it will know how incredibly different these two things are. The first is awful and complicated and terrifying but the second seemed utterly inconceivable. Stage IV melanoma patients, at the time of my diagnosis, tended to live for months…

At it is most basic – there is not a bit of me that ever imagined on hearing the news about the rapid and horrific spread of my cancer back in September 2013 – that I could possibly survive 10 years.

I couldn’t even imagine seeing my boys finish years 1 and 3 at school. I didn’t believe I’d see them progress from primary to secondary school. I truly didn’t believe for a second that I’d see my sweet little 5 and 7 year olds become teenagers or that I’d see those teenagers through exams and help them make plans for their futures. I certainly didn’t dare to dream that I’d see my boys dwarf me with their height and turn into beautiful young men.

I didn’t think Andy and I would get to celebrate 20 years together and certainly not the 29 we sailed past this year or that we’d get back to New York (twice) or finally get to Venice alongside all our wonderful family holidays in Greece.

I didn’t think I’d see I’d get to celebrate all the amazing milestone of my friends and family. There have been new babies, new careers, new jobs and new houses and an astonishing number of big birthdays.

The reality is I didn’t know that I would make it to Christmas 2013. So 10 years living with Stage IV cancer is massive for me.

The immense size of the milestone has done a fine job of messing with my head. On the one hand it is amazing and exciting and I am incredibly lucky but on the other it has made me really question two things. The first – had I known that not just that I’d still be here in 2023 but that ignoring the resident tumours I’m fit and well – shouldn’t I have done more? The second, surely my luck will now run out?

The – ‘I should have done more’ line of thinking is troublesome as I know why I haven’t. I simply cannot get beyond the fear and paranoia about committing to future plans and on the few occasions when I’ve attempted to actually make a plan, the evil goblins of coincidence or bad luck have intervened.

Thankfully it has been pointed out to me I have done the one thing I set out to do – I have absolutely been around to bring up my boys and that has been beyond amazing.

However the paranoia and complicated magical thinking, combined with the whole living between 12 weekly scans thing, has created huge limitations to what I have felt able to do. Plus, it’s not as though my cancer has kindly stayed reassuringly under control since 2013. Instead I’ve had lots of setbacks with progression, side effects, having to come off a trial, failing treatments, changing treatments, scares, scares that turned out not to be scares but realities…. It has not been an easy journey.

Whenever I have felt like trying to take some control and start making actual plans – the cancer has a habit of reminding me that it’s very present and very threatening and the reality is that it’s only the daily pills I’m taking that mean I’m still alive. There is still no obvious next line of treatment when the pills stop doing their thing.

The ‘I should have done more’ thoughts then bump into the ‘surely my luck will run out’ thoughts as somewhere deep down I am terrified that now my boys are in so many ways independent and less needy of me on a day to day basis – my very clever cancer will recognise this and do me in!

Even writing this I am aware of how ridiculous it sounds but there’s a big difference between knowing you’re being irrational and stopping the horrible stomach churning anxiety that relates to your terror that 10 years at stage IV means I’ve used up all my luck…..

As well as the fear that has been chasing me around this year there is also a good dose of survivor’s guilt. I am obviously nothing but relieved and grateful to still be alive but in the last 10 years I have lost count of the number of my melanoma friends who have died as well as all those with other cancers, some diagnosed long after me, who are no longer here. I know that my survival has no impact on other people’s losses but I do feel guilty that I am still here when so many others are not.

In recent years I really thought that I was mostly doing a pretty good job of handling the anxiety of living with uncertainty and the threat of progression but this year – and approaching this anniversary, has shown me it’s not that straightforward. The 10 year thing has finally sent me back to get some counselling as I recognised that all the lovely mechanisms that I have put in place to cope with the somewhat relentless scan cycle were doing their thing but weren’t helping with the terrible fear that my luck is running out and somehow ‘clever cancer’ will decide that 10 years is something it rather than I will be celebrating.

The counselling is helping, opening up a bit to people about where my head is at (which has been hard as I feel like I ought to be better and people must be fed up with me bleating on about cancer) is also helping and all the kettlebell swinging and running does clever stuff with endorphins which also helps.

Plus, now that the anniversary is here I really do have to acknowledge how extraordinary it is. There is not a moment of this least 10 years which has not been valuable. I am beyond grateful, relieved and to be honest quite overwhelmed by how much more of life I have experienced because of the revolutionary cancer drugs, my amazing doctor, my extremely knowledgable melanoma friends, the unbelievable support I have had from everyone. Sadly, there are still not nearly enough of us hitting this kind of milestone – I am one of the lucky ones and there are far too few of us. You only need to follow the news to see that the thing we still all hear most often about cancer is that someone has died…

So I am taking a leaf out of another melanoma friend’s book and am very much hoping to properly celebrate this 10 year thing by booking a family trip to New York next month because whilst I have found the looming anniversary unbelievably hard I couldn’t be more aware of how amazing it is. (Firmly crossing my fingers that this will be possible because obviously I couldn’t book before today as that’s clearly tempting fate!)

And today, well I shall do what I always do on the complicated anniversary – I shall be raising a glass to my good health whilst also thinking, as I always do, of all my lost friends. Melanoma you remain an absolute bastard but all the treatment, advice, research and a smattering of luck have done a wonderful job of staying just ahead of my cancer for 10 years!

8 Years! (8 years living with Stage IV Melanoma)

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.