Yet another milestone

So much of this blog has ended up being about reaching impossible milestones which is something I could never have predicted and would certainly never dared to imagine when I began writing.
It feels a bit weird to be quoting my own blog but really it is the very best way to show how utterly extraordinary today feels. Way back in January 2015, the night before my eldest nephew turned 18 , I wrote the following –

“He is the oldest of my fine selection of eight nephews and nieces but being the first he was the one who made me an auntie for the first time and to this day he still calls me Aunty Lucy. Like his delightful brothers he is an absolute treasure – everything you could want your boy to be and in that I have two little boys I look to him and his younger brother to see a glimpse of how my two might turn out. What I hate, is that I know that it’s so unlikely that I will get to see my beautiful boys see this particular milestone. So whilst I cannot wait to celebrate with my nephew tomorrow, tonight I am struck down with the bittersweet sadness that seems to rise up at every significant occasion. I cannot bear that I will not see either of my boys turn from boys to adults. I so desperately want to see how they will be. ..”

Well today, my Oscar is 18.

When I reread the post about my nephew’s impending 18th it slightly broke my heart. Since my little boy was 7 I have lived with what I thought was the certainty that I wouldn’t be there to see him grow up. I can vividly remember just desperately wanting to know how he’d look, what he’d be like whilst knowing that not only would I not see it but that my cancer and my dying could only shape his life in a damaging and traumatic way. This is a simply awful thing to experience. I don’t really have the words to describe how relieved, grateful and just incredibly happy I am to still be here.

Funnily when I think about how he was when he was little compared to the adult he is today it is rather lovely to see how much of him was so evident even way back then.

Here are just a few things that stood out.

His total inability to develop sensible sleep patterns has remained pretty much consistent. On our first night at home with Oscar, Andy and I ended calling the hospital suggesting there must be something wrong with him as we thought babies were supposed to sleep for 20 hours a day and ours had managed about two….. You can imagine how they laughed! Things improved a little but he never really believed in sleeping at night and Andy and I both had many a night pacing round for hours and hours in early hours trying to persuade him that it was nighttime. These days you’re more likely to find him asleep during the day and often hear him pacing around in the early hours with his totally dysfunctional body clock! Looking through old photos of him I realised that a ridiculous number of the pictures show him fast asleep – often in the middle of the day and often in odd places – just outside his bedroom, in amongst the content of his dressing up box, half on half off his bed!

Up until Oscar was nearly 2 and a half (and 3 days before I had Max), he came to work with me a couple of days each week. Oscar and I, pushchair in hand, would navigate the joys of busy tubes and grumpy commuters heading from Walthamstow to Notting Hill where he, and often my boss’s Labrador, ‘helped’ me manage the Lucy B. Campbell Gallery. Looking back now it seems like a madness but my boss was wonderfully accommodating, financially it made sense and best of all I was lucky enough spend lots of time with him. These days he’s less likely to shout at people on the tube for taking ‘mummy’s seat’ – the end one where I could park the pushchair next to me and is on the whole a quiet, thoughtful young man but he remains, really lovely company.

He has never been the biggest fan of school but nonetheless has done brilliantly well and thankfully has found that 6th form life suits him far better than previous school years. Even during the years of school that he endured rather than enjoyed he showed an enthusiasm and talent for writing that led to a small ‘book’ of his being added to his primary school library and now his writing has turned into screen writing and all that talent that bubbled away when he was younger is being turned into screen plays and short films and hopefully a career.

I could write endlessly about Oscar – he is kind, creative, funny, clever but really all I want to say is how ridiculously proud I am of him and how grateful I am that I am getting to see who will be…

Now, when will he wake up so I can wish him Happy Birthday!

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!

May: Melanoma Awareness Month

I have been feeling very neglectful of my blog as have failed to post anything this year.  When I was I first diagnosed with melanoma in 2011, in a search for reassurance, I’d spend hours trawling the internet trying to find stories of people who had (as I did back then) stage III melanoma but who didn’t progress. Sadly I struggled to find such a thing and instead people would ‘start out like me’ then they’d progress and then they’d mysteriously stop updating their blogs….. I was not naive enough to hope that these people were doing great and living joyful fulfilling lives …. back then …that’s just not what happened with advanced melanoma. 

So when I abandon my blog for months at a time I do worry that people fear the worst! Thankfully, right now, all is well. My lack of updates is mostly down to not really having very much to say and certainly not feeling I have some amazing knowledge or wisdom to impart. 

I’d love to say that melanoma has faded into the background and I’ve filled my head with happier things but actually it’s been very much on my mind. Obviously, there’s still the monotonous and terrifying scan schedule and so every twelve weeks the terror descends and I throw every coping mechanism I have at trying to stay reasonably together. 

Alongside that I am becoming increasingly conscious that all my optimism about how amazing it is that the treatment landscape for melanoma has improved so much since my original diagnosis is beginning to falter. The fact that so many more of us are living with advanced melanoma, with some who may even be considered cured when immunotherapy treatment has so successfully reprogrammed their immune system, doesn’t take away from the fact that people still keep dying. It’s not just people who caught their cancer too late, or that the treatment never worked but people, who like me, have managed to keep their melanoma in check for years by staying on top of treatment options, protecting themselves with all the knowledge available and yet whilst it’s much better than it used to be, it’s far from good enough as too many people are still dying. 

This month is melanoma awareness month – and I’d love to think that after all these years (it’s exactly 12 years today) I’d have a raft of amazing advice to pass on to people. In some ways I do – I have lots of advice for anyone who is unfortunate enough to be diagnosed with melanoma 

1. Make sure you have a good medical team – move to a specialist centre if possible.
2. Get a second opinion especially if you have any doubts. You are placing your life in someone else’s hands – it’s OK to be picky! 
3. Stay up to do date with the science. You don’t need to be a ‘science’ person to follow what’s relevant to you. 
4. Be your own advocate or if you have a loved one who can do that better than you – let them.

By coincidence – I have ended up marking my odd anniversary of diagnosis (this one usually slips by as it was so trumped by my stage IV diagnosis) by spending the morning with the Melanoma Focus team at a parliamentary drop in session in Portcullis House. The purpose of which was to promote greater awareness of skin cancer as part of the #knowyourskincampaign and to encourage MPs to support the removal of VAT from sunscreen.

So on my journey home I was again trying to think about some amazing insightful thoughts or advice for May’s Melanoma Awareness Month.

But in fact, really, it’s the same that it has always been – do your very best to avoid getting melanoma in the first place. Whilst not all melanomas are related to sun damage – the ones that are, are avoidable and so not getting melanoma in the first place is the best possible option. Plus, it goes without saying if you have something you’re worried about, trust your instincts and get it seen immediately.

Be careful in the sun don’t try and get a tan, plaster yourself in high factor sunscreen, seek shade, cover up. 

I really didn’t think I was the sort of person to get cancer…..

Only picture I remembered to take this morning – a quick snap of a sunny Thames from Portcullis House

Running and scan results and a little bit of fundraising…

Last year I ran a lot (for me) and by the end of 2021 I was extremely proud of my 500 miles. Mostly I ran 3 miles/5km and throughout the year I managed a couple of 6mile/10km runs and was ridiculously pleased with myself. A couple of months into the year I got it into my head that perhaps I should try for a 1000 miles. For reasons, I really can’t quite fathom, I thought it was a good idea. It might’ve been because I didn’t have a lot else on, the weather was cool and I seemed, without too much trouble, to have upped my regular runs to the longer ones. So, I thought averaging 3 x 6 miles a week was entirely manageable.

What I didn’t factor in was –

I really don’t like running in the heat and it was a wonderfully long hot summer. So for months I was having to trot around for an hour ‘glowing buckets’ and wondering why I decided to do such a crazy thing.
I missed a couple of weeks in August because of going on holiday and then missed most of September because of covid. Oh, and occasionally, I am busy baking and there’s no time to nip out for an hour or it snows and suddenly running is terrifying!
Finally and in my mind most importantly – it’s a lot of running! It has been difficult and relentless and I wish I’d never got the stupid 1000 miles into my head.

So as I sweated (sorry, glowed) and fussed I thought – well perhaps to motivate me I could ask people to donate some money to the Marsden and that might make it all feel worthwhile. Ah, but I’ve done that before and back in 2013 the decision to walk a marathon clearly led to my cancer progressing from stage 3 to 4 and when I tried again in 2016 to raise money by running my first 10k – my magical drugs caused such awful side effects I ended up being hospitalised and taken off the drug trial so fundraising is complicated. Magical thinking is even more complicated but that’s ok because I’m sure we all do it a little bit.

So, I put aside the thought of raising money but then in June I had the horror scan. The ‘brain blip’. that caused 4 weeks of total terror and again I thought….. it really would be good to raise some money for the Marsden because they are excellent and I, and many others, really need them. To reinforce that, my wonderful doctor went absolutely above and beyond and called me just over an hour after I had my follow-up scan to let me know that the ‘brain blip’ did actually appear to be just that and that I could breath again. He could’ve waited until my appointment two days later but he didn’t. He chased up the scan results the moment he could and saved me from a further two days of terror.

So again I thought I really would like to raise some money for the Marsden but I was far too spooked with the magical thinking and paranoia that committing to something that was still nearly 6 months away from being done was asking for trouble. So, I thought, I’ll wait for my last scan before the end of the year and if that’s ok I’ll set up a fundraising page and hopefully people can donate the cost of a pint or a coffee and that would make me feel better about the hideous running task I’d set myself and better still it’d help all us sick cancer-y people.

However, when I checked through the dates I realised that last scan was rather close to the end of the year. In fact, today is scan results day and to my utter joy and enormous relief I am happy to report that everything is wonderfully, brilliantly stable. The ‘brain blip’ is still present but it’s not doing anything so for now, it can stay as it’s reassuringly not behaving like cancer. So, not only do I get to head into Christmas with beautiful stable scan results but I’ve finally set up a fundraising page.

I know the timing is bloody awful – it’s close to Christmas, everything is expensive, the world is falling apart but no one needs to go wild – a tiny donation will be massively welcomed and The Marsden really is exceptional.

Plus – despite all the bloody hurdles (not literal- as that would be crazy) I’m nearly there. I’ve reached 986 miles and so with only 14 miles to go the end is very much in sight.

As I ran (or more realistically slipped and skidded) along the pavements yesterday I vowed to myself that my plan next year is to run much less! 1000 miles is too much for me – averaging nearly 20 miles a week is ridiculous. So next year I shall run less but I think I shall very much enjoy it more!

So if you can face it here’s a link to my fundraising page.

https://www.justgiving.com/fundraising/lucy-davis43

9 years

So – here I go again – another anniversary. Even just writing ‘9 years’ makes me feel a little teary as it’s ridiculous and wonderful and I am very very lucky. 9 years living with stage IV cancer – an utter madness!

As is so often the case this particular anniversary has also coincided with scans. Since the ‘scare’ more like ‘terror’ back in June I’ve been upgraded from 6 monthly to 3 monthly brain MRIs (alongside the body CT) so instead of just having the double scans twice a year I now have the treat of getting them every time. SO, lots of and lots of anxiety and dread made infinitely worse by both the recent brain blip and the horrid feeling of gloom and sadness that September has provided for the last 9 years.

Thankfully yesterday’s news was all good! My body CT shows everything continues to be stable and my brain scan describes June’s horror – the little f****er on my brain as ‘barely appreciable’ and the rest of my brain as ‘unremarkable’. If it weren’t such good news and such a relief I’d be deeply offended by the language!

When I first started writing this blog I obviously didn’t expect to still be here and writing it all these years later and that’s very much the case for my anniversary blogs. So really I have very little to say beyond the fact that I still find September 24th very complicated.

In the run up to the date it’s impossible not to remember the tricky months and weeks that preceded the horrible appointment back in 2013 when I knew too much not to be terrified. It also means that I am continually shocked and grateful that despite how bleak it looked back then I’m still here very much here. The sense of relief at still being here is always tempered by the fact that I have lost so many friends along the way. This year has been particularly brutal for my European melanoma group and that has felt hard because not just have so many friends from that group died but they’re the ones who have been the most educated in their disease, the most determined to seek the best treatment. The fact that we’d all meet and see each other year after year felt almost like a safety net – as if they were still ok – then I might keep being ok too. Plus, more importantly, I miss them.

So 24th Sep will always feel complicated. I spend the weeks before battling with gloom and the actual day is a peculiar mixture of grief for all the friends I have lost, sadness at what cancer has done to my life and all those around me, alongside sheer astonishment that 9 years on I am alive, albeit very much living with cancer but living with it is infinitely better than the alternative. So many years of memories and milestones that all seemed not just unlikely but genuinely impossible.

As I selected pictures to accompany this blog I tried to choose one from each year from within a few weeks of Sep 24th and have ended up feeling quite overwhelmed by seeing my lovely boys turn for tiny little things into the delightfully oversized boy/men I have now. There are so many holiday pictures showing the four of us just doing our best to live in the moment and we have been so lucky for that to have just kept on going on and on. Plus, an excessive number of pictures of glasses of champagne toasting every good scan and milestone along the way. Also, because my birthday is awkwardly close there are lots of pictures of me and cake all they way from me at ridiculously youthful 36 (far too young to be diagnosed with ‘terminal’ cancer through to me turning 45 nearly a year ago!

So, today I shall be raising a glass (or two) to much missed friends, to years of beating the odds and being able to just keep being here and to all those lovely people who have helped Andy and I ‘live in the moment’ for a crazy long 9 years.

9 Years !

A very happy day

Way back in the dim and distant past when Oscar was a tiny little thing and we were contemplating where to send him to secondary school I found myself totally caught out watching a school publicity film with a load of enormous children joyfully receiving their GSCE results. I found the whole process of looking at secondary schools pretty extraordinary and with my ‘months not years’ prognosis having been given when Oscar was in year 3, I was quite shocked that here we were with a year 6 kid and I was going to be able be involved in choosing where he went next.

So the sight of all these children getting their results just tipped me over what ever the edge was and I found myself crying at the sight of what was going to be totally impossible for me. (This was deeply embarrassing and inappropriate as I was sitting in an auditorium with a load of other parents watching lots of children I had never met). The terror and sadness of fearing you won’t be able to see what happens next with your children probably never really goes but these years are so full of milestones and I greedily want to see them all.

As it turned out I didn’t just see him start Secondary school but I got to see Max start too and even more amazingly I got to see Oscar finish and yesterday I got to see him being one of those enormous kids receiving their GCSE results. For a boy who has never ‘loved’ school but has merely tolerated it he did totally amazingly and Andy and I couldn’t be more proud. Not only were the grades really rather brilliant but he just took the whole madness of covid, the oddness of living with a mother with advanced cancer, the hideous number of exams, the hugely prolonged exam period in his stride.

As I’ve said above life is full of milestones and in some ways I worry that I get too attached to them but both the horrible scary 4 weeks following the last bad scan as well as finding out a couple of days ago that yet another wonderful member of my precious European Melanoma group had died remind me that actually you have to grasp the good days and mark the milestones. Cliched as it sounds – life is truly precious.

So yesterday we go to celebrate yet another impossible milestone and in just over a week Oscar will start at 6th form college and Max will start in year 10 and the GCSE joy that entails and hopefully there’ll be more precious days and more milestones to be acknowledged and celebrated.

It was ‘just a scare’

It turns out that I am the girl who cried mets! So incredibly relieved to be told that whatever it is that is lurking in my brain has gone from ‘tiny’ to even tinier and therefore, although the scan report says that it ‘remains indeterminate….. it’s not confirmatory for brain metastasis’. It’s been suggested that further surveillance is probably wise and my brain MRIs will move from 6 monthly to 3 monthly but compared to what I thought I was going to be told, that I can live with!

What is it I hear you ask? Well – who knows! The best explanation I have been given is essentially it is the downside of very accurate imaging technology combined with very regular scans. In other words – if you can someone often enough you’ll find things – in my case a little spot of hyperintensity that doesn’t want to be identified.

I was due to have my results appointment today but my doctor went above and beyond and was able to call me only a few hours after my scan on Monday to give me the good news. I intended to blog straight away but have found myself pretty much without words. My conversation with my doctor was a combination of me crying and saying thank you rather a lot and generally being pretty incoherent. I have to assume he’s used that – he was certainly very kind and polite!

I was so utterly caught out by the phone call and even more so by the fact that all of this terror that had been building up over the last 4 weeks wasn’t really sure where to go. I could barely sleep on Monday night as was just too overexcited that for now, it’s all ok. I can keep taking my pills, I don’t need to worry about changing/accessing new treatments, I don’t have to worry about the potential short and long terms side effects and I don’t need to think about what it all would mean for my prognosis. Instead, I can just carry on….

Funnily yesterday was much harder – the ridiculous heat didn’t help but actually I think I was also struck down by the massive post adrenaline dip and just a general lack of belief that it wasn’t what it all looked like. It’s always really hard to move from anxiety and terror to relief…. it takes a while!

So, it’s taken me a couple of days to update my blog and all I really want to say is phew and to reiterate what I wrote last week – I am incredibly grateful and hugely appreciative of quite how much love, kindness and thoughtfulness has been shown to Andy and I and hope to all my nearest and dearest over the last month. It was, without doubt, a truly horrible 4 weeks. I, as I so often am, cannot help being a little embarrassed about all the drama and do wonder if I should’ve said nothing until the second scan but in all honesty – I don’t think we would have made it through the last month in one piece (which would’ve been unfortunate under the circumstances) without all the extraordinary support we received. So a huge thank you to everyone and now back to searching somewhat fruitlessly for a last minute holiday……

This little chap was purchased by my excellent sister and before she had a chance to give him to me he was savaged by her lovely dog and therefore had to be mended by her fair hand (Claire’s not the dogs) in order to accompany me to my scan. So it seems that from now on I shall have to take the tiny good luck care bear as well as my special good luck card with a 4 leafed clover to each and every scan!

1 week to results…..

So – 1 week to go. I’m due to have my follow-up brain MRI next Monday morning (18th July) and then my results late morning next Wednesday (20th). As I said in the previous post, it may well be that this scan also proves to be inconclusive.

Ideally my doctor had wanted a 5 or 6 week wait between scans but due to his holiday commitments it would have ended up being 7 weeks and I just couldn’t wait that long. So, it may well be that whatever the ‘tiny’ something is that has caused such a disproportionate massive amount of distress remains unchanged and therefore we’re none the wiser. I assume if that is the case then it’ll then be another wait for another scan to see what it is. (Although without the wonderful possibility it was just an error).

As I’m sure you can imagine, it’s been really, really hard. The endless headfuckery loops have been whirling around and the infinite number of ‘what ifs’ are driving us all mad. It turns out that it’s a bit awkward to suggest that all of this might make my brain explode or any of the many phrases that mention my my poor befuddled mind …. it’s a minefield.

The big question that I failed to answer in my last biog is that if it’s potentially just an anomaly or an error – why couldn’t I dive into a scanner there and then and see if it’s still there? To be totally honest, despite what I’ve been saying to all those who’ve asked, I’m not completely sure – but my understanding is that whilst that might rule out whether it’s literally a scan error it wouldn’t really tell us if it’s either a something else or cancer. The best way to work that out is to see if there’s any change. So some of what has been freaking me out over the last few weeks is simply the idea that we’re waiting to see if this bastard ‘thing’ grows or multiplies in a cancer-y type of way or whether it stays completely the same or whether it disappears.

I have tried to put it to one side on the basis that it might turn out to be nothing and therefore it’s a waste of worry but seeing as melanoma does seem to love the brain, they scan my brain to check it hasn’t gone there and something has shown up – that line of thought hasn’t worked very well. However there is definitely a bit of me that is clinging on to a bit of hope about it all and with that in mind (see, impossible not to refer to my poor head), I do feel like I shouldn’t completely freak out. At least right now I have got some hope but possibly next week that’ll be gone and it’ll be a question of adapting to a new and much scarier reality so the bit of hope I have right now is rather precious.

I have also tried to prepare for the worst but it turns out that’s not really a thing. I don’t think assuming the worst and allowing no room for any other possibility will actually make it any easier if I do get bad news next week. Way back in 2013 when I knew deep down that my cancer had metastasised it was still the worst moment of my life when I was told that it actually had. Plus, at the moment, I’m still basically too frightened to think about the implications of what it’ll mean and so there are limits to how far down that thought path I’m willing to go.

So what have I been doing. Well obviously I’ve been running and throwing my kettlebell around as that’s just what I seem to do. I have discovered that you can’t cry when you run – it really hurts – so on a couple of occasions I’ve had to pause and sit on a bench until I’d got my emotions back in check. But, other than my massive sob all over Andy when I left the hospital last month there hasn’t been much crying. Instead we’ve been staying really, really busy. Lots of socialising, lots of walks, coffees, evenings out and both Andy and I have been incredibly well looked after by our very wonderful friends and family.

It seems so cliched to say but it helps so much. The whole experience of having cancer and living with stage IV is generally incredibly lonely and isolating but actually this last few weeks I have felt so looked after that I haven’t felt at all alone – instead I’ve felt incredibly comforted by wonderful company. Alongside all the coffees and lunches I’ve also had a steady stream of absolutely beautiful flowers and lovely thoughtful messages and the most spectacularly relaxing reflexology session oh and just through the post now an excellent jigsaw puzzle to keep me calm. So really as well as an update with very little information I really just wanted to say an enormous thank you to all of those around me who have reached out and made me feel loved and in this current headfuck of a situation totally understood.

Now with the nerves and anxiety really ramping up with just a week to go it’s back to crossing everything that it all turns out to be a storm in a teacup!

Hoping for a ‘scare’

I had very much hoped to write a cheery blog post about Oscar finishing his GSCEs and his time at his current school and how ridiculously proud of him I am. All of this is still very much the case and we had a lovely evening of celebration last night and I genuinely couldn’t be more proud of him.

However, because life can be very cruel and the timing is just shit – today was scan results today and it was the 6 monthly double of body CT and brain MRI. The CT is reassuringly fine – everything stable and my currently treatment is clearly keeping things in check. However, the brain MRI has the terrifying words – “a micro metastases is suspected”. It’s very hard to know how to feel beyond absolutely terrified but in reality there are so many possible scenarios.

The main one is the very real possibility that in fact what is showing is an anomaly – a fault in the scan (it happens), or possibly just something else hanging out in my brain that is non-sinister. However – as I’ve always said on here – melanoma really likes the brain – it’s one of it’s go to places. The whole reason I have regular brain MRIs is because it’s very likely that if my melanoma spreads again that is where it will go. It’s the reason the scans are scary like nothing else – it’s not the claustrophobia it’s totally the blinding terror that the bastard disease will have taken up residency in my head.

The one thing on my side is that the CT was fine and so hopefully the cancerous nasties haven’t bypassed their usual haunts in my liver/lymph nodes and gone straight to my head however it can and does happen.

So for the next four weeks it’s going the be the endless loop of ‘what if’s’.

What if it’s a nothing?
Quick, let’s book a holiday.

What if it’s exactly the same in four weeks?
Then probably another four week wait to see if that makes things clearer.

What if it’s grown or there are more? Then I’m fucked. Actually no, not a helpful response – it actually means more treatment. Potentially more Ipilimumab + Nivolumab if our insurance will pay for a third go, possibly some targeted radiotherapy…. There are, thankfully, some possibilities but regardless it would mean a massive change – no driving, coming off the treatment that I’ve found so fabulously tolerable and onto something that will be much harder. Plus if the cancer is on the move again then really hard not to see that I’d be in trouble. I know many people who’ve had successful treatment for brain mets from melanoma but I’m very conscious that I’ve had a lot of treatment already and that’s not in my favour.

So no celebrating tonight – no glasses of champagne and actually the very prospect of the endless thought loops, mind-fuckery, the inevitable sleepless nights and the very real fear that my luck has run out – makes me want to cry. So instead a bit of a plea – please try and understand how frightening this is for us. I desperately hope I’m the ‘girl who cried mets’ and next month or possibly the month after I get to write – hurrah – it was a nothing what a load of fuss for no reason but right now there is no way of knowing. Whilst I’m determined to hold it together because worry is a waste of imagination or something like that and more importantly whilst I’ve updated the boys on the basics I don’t want them to worry unnecessarily – it’s going to be hard. Melanoma is a bastard and one that has killed far too many of my friends. So, please be patient with me and with all my nearest and dearest – it’s going to be a very long 4 weeks. I shall keep the blog up to date as it’s the easiest way of getting the information and detail out there. For now, desperately hoping this is an actual cancer scare and not actually cancer.

Mad March

My slightly mad March challenge was to walk more and run further. My goal was to run 100 miles throughout the month and to manage at least 10,000 steps a day.

Why?
Was I trying to raise some money? – No – I’ve already asked too often.

Was it about fitness? – A little bit…… I definitely feel better when I exercise. I have absolutely no control over my cancer (I have pills for that) but I can at least control my fitness. However, with my kettlebell sessions and my usual regular amount of running I am already pretty fit and probably don’t need to be doing any more.

Was it about the challenge? Again, a little bit. It wasn’t a massive challenge as all of it was pretty doable but oddly whilst the running 10k every other day has been relatively easy it was keeping up the steps on the in-between days that has made more of an impact. With nothing very much to do it’s hard to get 10,000+ steps in just being at home so I have been on a lot of weird and random walks. The boys have been surprised at the number of times I’ve just popped to the shops for something – several times a day….. rather than trying to cajole one of them to go. Plus I’ve been relying on the notoriously unreliable health app on my phone which I’m know under-measures – it thinks I only use 8700 steps to run my 10k…… which suggests some serious leaping and flying….so I’ve made it harder for myself. Plus as the days went on somehow 10,000 steps a day didn’t seem quite enough so I always aimed for more.

So what was it about? – Well, as always, cancer.
As I touched on before, maintaining my fitness is about control and I’ve become more obsessed with staying fit and strong since my diagnosis. But actually it’s much more than that – it was because I had another scan looming and that always makes me jittery and running and staying busy definitely helps with that. The scan, thank goodness, was fine and my cancer due to the magic pills remains reassuringly stable. However, this month, the jitteriness wasn’t just about the scan – it was about the fact that my friends, my ‘melanoma’ friends keep dying.

At the end of February I was stunned to hear the news that another of my long-term stage IV-ers who in theory are ‘living with’ rather than ‘dying of’ melanoma had died. I knew that her situation was precarious, it always is when the approved drugs stop working but through sheer tenaciousness she’d found a trial and because she always had before – I just assumed (hoped) it would buy her more time – she’d bounce back. I honestly haven’t managed to get my head around it. She and I had met quite a few times but mostly we’d just messaged a lot. She was absolutely amazing at staying in touch regardless of where she was at with her disease and for so long, despite differing circumstances, it felt like we were in the same boat. It feels utterly surreal that she’s no longer here and despite having booked my train tickets – no bit of me as really accepted that I’m going to her funeral on Monday.

Just as I was nearing the end of my mad month of too much walking and running I found out another one of ‘us’ had died. Another really lovely friend who couldn’t have been more educated about her disease and more determined to throw whatever she had to at it.Again, a truly lovely woman, someone I just assumed I’d see again once covid had settled down and the European conferences and workshops would start up again.

As I’ve said before in this blog having ‘melanoma’ friends’ is always going to be complicated but for me the positives far outweigh the negatives as the friendships in the end are worth the heartache. Plus I’m relieved that I wasn’t simply dumped by all my friends on diagnosis as that would’ve felt a little harsh!

So in order to ‘keep on keeping on’ or whatever it is I’m doing I have literally just kept on moving. I still feel incredibly sad but I feel physically strong and mentally reasonably robust all things considered. However, I’m also exhausted so whatever ridiculous challenge I set myself for April it’s going to involve far fewer steps!!

(I made it to 101 miles of running and averaged 13,700 steps a day by 31st March. Have opted for pretty pictures rather than strava/steps pics to accompany blog post)