The baby is a teenager!

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.

21.1.21 – Vaccines and good memories

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.

Two years of the pills….

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!

7 Years!

Living with Stage IV Metastatic Melanoma

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.

https://marsdenmarathon.blackbaud-sites.com/fundraising/marsden-marathon2021

A little escape

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.

A little update

After a couple of weeks of feeling like I’d forgotten how to breathe I was hugely relieved to be told that my latest CT and brain MRI were all fine. Since receiving my results on Monday I have very much enjoyed not waking up feeling breathless and anxious although I do seem to be suffering from nausea which is far from delightful but still preferable to the not breathing thing. I’m hoping the queasiness will prove to be a fleeting side effect rather than one that decides to stick around.

As always the wait for the scan and results was tough – the usual rollercoaster of fears and the frustration at the terrible repetitiveness of feeling so emotionally wrung out every 12 weeks. However the relief that all is fine for now is just amazing. I’m now on my 19th month of Encorafenib and Binimetinib which feels extraordinary. Thinking back on it that’s how long the Pembrolizumab worked for me which was the longest time I’d been on continuous treatment so come September when I start my 20th month that’ll be a record for me – an odd one – but one for which I am very grateful.

The whole covid, lockdown, shielding thing has left me with very little to say for myself – hence the total lack of blogging for the last few months. Remarkably, everything has basically been pretty much alright. As a family, we’ve adjusted very easily to the limited scope of what we’re able to do and whilst still spending most of our time safely at home we’ve enjoyed the relaxations which have allowed us to meet up with friends outside as well as being able to get out to exercise.

Cliched as it was – the first outings Andy and I went on were to join everyone else in attempting the couch to 5k. I’ve done it several times before and a few years ago I built up to 10k but always stumble and give up as really I don’t like running.

This time it went much more smoothly. Firstly – it was just good to be getting out of the house, secondly I’ve really enjoyed running with Andy and thirdly to my great joy I managed a very decent 5k time for me – the best I’ve had since cancer and treatment and all the stuff that seems to have slowed me down. Part of the curse of cancer is all that it takes away from you and those little victories – a post-cancer personal best – make me feel a little less like the cancer is totally in control. Actually what I’ve finally learnt (having proved my point with the PB) is that if I slow down I actually quite like running.

So life has got very small in that it’s mostly the four of us at home and whilst the other three have had to get on with work I’ve been terribly lazy and have spent a large amount of the summer sitting reading in the garden and when the mood takes me there’s been a lot of cooking, cleaning and exercise. It’s odd that on one level the last 5 months has in many ways been ok but the awareness of how bad the Covid situation is – how much heartbreak and fear it has created is dreadful.

I wake up each morning hoping that somehow everything will have got better and instead there seems to have been crisis after crisis – each one dealt with more clumsily, less transparently than the last and yet still each morning I hope for the best.

Living with Cancer in the time of Covid19

It’s now 8 weeks since I was given my delightful ‘extremely vulnerable’ label which has meant that Family Davis had to pretty much seal up the doors and hunker down. On the upside, despite being housebound, we’re all still talking to each other and all seem to like each other and in lots of ways it’s been quite nice having lots of time together. As a family we are very used to living with uncertainty and haven’t been as badly hit as many other by the shock of having life totally disrupted by something so uncontrollable.

As I said in my last post, dealing with this thing day at a time makes it pretty manageable. The fact that I haven’t put a foot past my front gate for 8 weeks means I haven’t had to deal with people flouting the social distancing rules out on the streets or in the shops and so haven’t had to experience any of the associated stress. It is frustrating not being able to just pop out for anything and so running out of milk requires sending a plea to selection of delightful friends and neighbours and hoping that one of them can drop some round. Thankfully – they’ve been amazing and we’ve been very lucky but it does feel awkward and it doesn’t feel entirely comfortable having to get other people to do run around on my behalf. Although on the upside we also continue to know that we’re totally safe and remain unexposed to the virus plus just staying in is very simple!

The big downside is not being able to get out for a walk and despite my dislike of running I would love to be able to get out and stretch my legs and see a bit of the outside world. I have been able to continue exercising through the magic of zoom and am still swinging my kettlebell around so I’m not entirely sedentary but I fear a short stroll, if I’m ever allowed out again, may well do me in.

The outlook for those shielding remains very uncertain as they’ve largely been ignored during the daily briefings and the original 12 weeks was extended by a couple of weeks without any fanfare but just a few people receiving texts and a change to the government website. As things stand the current end date or in fact review date is the 30th June and in theory by then there ought to be some slightly clearer information about who really is ‘extremely’ high risk and what measures can be put in place to protect them. The likelihood is a longer period of confinement but in that it’s impossible for us to social distance in our house I think this will prove less straightforward as there’s a limit to how long I can keep the boys indoors if lockdown has basically been lifted and by then it’ll be over 14 weeks!

So all in all, despite the uncertainty, I’ve mostly been OK. I am very aware that if I start looking ahead I feel desperately sad that the whole ‘living my best life’ thing has been so massively curtailed by Covid. So many of the things that I love – going for walks, meeting friends and my absolute favourite thing – our annual two weeks on a lovely Greek island – have all had to be forgotten. If I knew that this was going to just be 3 months or even 6 – it would be easier but I fear that restrictions will continue and that’s when the stage IV thing feels pretty awful.

I don’t want this to be it. I don’t want to lose too much precious time having to stop all the things that I love doing. Yes, on a daily basis, we’re actually having a pretty good time. It’s lovely having lots of time as a family – I’m mostly enjoying cooking lots of family meals and just having so much time together and through zoom etc it’s very possible to stay in touch with all my nearest and dearest. However, it still feels like a treading water and really it feels like a massive compromise which is very hard as every moment is precious and when I’m still having to live 3 months at a time with a scan dictating whether or not I get to keep ticking along or whether I’ve once again hit crisis point with my treatment.

At the beginning of the Covid crisis I made a very conscious decision to put any anxiety and fear about my melanoma on hold – primarily because Andy and I both felt pretty heartbroken when we had to cancel our 20th Anniversary trip to Venice and not even get as far as booking our return trip to Lefkas for the summer. Over the last 6+ years of stage IV and almost 9 years of Melanoma we have found that our holidays are the most precious time. They are the time where I can switch off and just totally enjoy the moment and not be a cancer patient living with a terminal diagnosis. Instead I feel incredibly lucky and privileged to be somewhere beautiful with my family.

So it was easier to just not get bogged down in the cancer and the fear that by not getting away this year we might have actually already had our last holiday. This has worked brilliantly – the day by day thing has meant that we’ve been really rather content but unfortunately, despite trying not to think about the cancer, I still need the 3 monthly scan and once again it’s imminent and so right now it’s hard not to get caught up in my fears for the future and Covid is obviously just adding to that.

Next week I will finally go beyond my front gate as I’m due for my CT scan at the Marsden and so after more than 2 months, Andy and I will briefly break the very strict shielding we’ve been following for the world’s least jolly adventure! And therefore it’s become impossible not to fall back into my usual pre-scan anxiety. The fear is the same – that awful horrible stomach-turning terror that when I speak to my doctor he will be sounding solemn and will tell me that Enco+Bini has stopped keeping my cancer in check and there’s progression and then what? I’ve had all the approved treatments – the next step pre-Covid most likely would have been a drug trial – but now is not the time for drug trials. Whilst the government keeps saying that hospital treatment is returning to normal this is not the case for trials – they are too risky! They have the potential to require lots of hospital time with treatments and complications from side effects and they obviously also need the involvement of doctors and nurses and whilst the situation in London is calming down – we’re not there yet. So, whilst in many ways the fear and anxiety I’m currently experiencing is so familiar it’s almost boring, the Covid-shaped spanner is adding another unwanted dimension of terror to the whole situation.

In my last blog I slightly berated those cancer patients who seemed to revel in the fact that the pandemic has led to many experiencing the fear and uncertainty that is so familiar to those with cancer and I was determined to not go down the – well I have stage IV cancer – and so it’s worse for me route. I stand by that, as I think this crisis is incredibly hard and complicated for everyone and we’re all worried it. However, with my scan so imminent, I will admit that the fear of never seeing the end the crisis is made harder by the experience of living with advanced cancer.

I am very frightened that I won’t get a chance to look back on that surreal time when a virus disrupted everything we’re all so used to – but instead I won’t ever see the end of it and that I won’t get to do all those things that I love doing again.

So for now, I’ll calm myself with baking and jigsaws and cuddling my lovely boys, beautiful flowers, my pretty little garden, the extraordinary kindness and generosity of my friends and family and just really hoping that my damn melanoma will recognise the continued need to keep behaving.

What a difference a couple of weeks make…..

When I wrote my last blog celebrating my good scan results my plan was to do some living – well I’m certainly doing that but just not in the way that I’d thought.

At that time I had a trip booked to go to Scotland with Claire for a family wedding, a family trip to Cornwall over the Easter Holidays and Andy and I had finally arranged our long talked about trip to Venice – using the excuse of our upcoming 20th Wedding Anniversary as a reason to actually get it booked….

Well obviously with the awful and frightening spread of COVID19 I’ve spent the last week cancelling all these trips and whilst I’m obviously sad not to be doing them –  it pales into insignificance in light of the awfulness that the corona virus is causing. The mortality rate is continuing to rise and really no one has any idea how or when things might ever return to normal.

It is a very strange time to be alive right now. Never have most of us experienced something so daunting, all-consuming and global. Within the cancer community – particularly those with stage IV there is a certain amount of something verging on smugness that we’re used to uncertainty and feeling as though our lives are under threat but I’m not sure what the point of this sort of thinking is. Yes, it’s true, I have adapted and re-calibrated surprisingly quickly to finding myself in the ‘extremely vulnerable’ group and being housebound for at least the next 12 weeks and I imagine pre-cancer I’d have found this harder but the reality is that every single person I know is feeling encumbered with their own very personal set of concerns at this time. People are obviously worried about their health, the health of their loved ones, access to food, job security….. the list goes on. It is universally tough for everybody.

In some weird way I’m kind of lucky in that the rules for me are very strict. We just have to stay in for 12 weeks, make sure food is delivered, be super careful about making sure it’s wiped down but unless one of us has already been exposed we’ll hopefully be ok until some time in June – and because I’m used to not looking more than a month or two ahead mentally – I’m deliberately not ticking off the days and wondering about 12 weeks from now. Yes, of course, I miss going outside, I miss exercising outside and I really miss walking but really for me at least – it could be a lot worse. Unlike all those who work for the NHS or in shops or any job that means that they’re potentially being exposed I’m safe at home with Andy and my boys and as I’ve always said – really that’s all I want.

So, and this is most unlike me, I offer one bit advice – don’t think too far ahead. Contemplate the next few days, maybe the next week but don’t go beyond that. It’s all so much easier if you just tackle a little bit at a time and if you can, try and find some tiny silver-lining in this whole situation – no commuting, more time with family……..it might help.

Now I probably sound all evangelical and smug – so, really sorry about that! Just having a rare moment of counting my blessings, enjoying the sun shining, having my boys around….. no doubt, give me a couple of weeks I’ll be climbing the walls but for now stay safe everyone.

 

Garden currently a bit full of washing and nowhere near as abundant but this is from last summer.

Raising a glass to ageing!

Well after no posts for a couple of months I’m now going wild with two in a row.

Very happy to report that despite all the gloom and doom of my last post –  my latest scan results show that everything is reassuringly stable. For the last 4 years I’ve always had my scan results appointment on a Monday morning so today’s one feels like I’ve somehow cheated the system as due to my doctor’s lack of availability next week he’d suggested I come in this side of the weekend instead.

I have to say it felt very nice to sneak along and not feel the weight of everyone else’s worry about the results – even though it didn’t alleviate my fears. As I’d had such a bad feeling about the scan it felt safer this way and I figured it would give me a bit of time to digest what I was convinced was going to be bad news. Instead – I’m celebrating and Andy and I have managed to enjoy a very lovely glass of champagne at the restaurant across the road from the hospital whilst I waited for my next supply of pills!

So it turns out that my headaches and memory issues are just down to stress and the back pain is a thing but not a scary one. Like a vast amount of the population my spine is feeling it’s age and the discs are looking a bit manky because of degenerative disc disease. Unlike most people this almost lead me do a little happy dance in the doctor’s office but figured that this would be embarrassing for everyone. So like the grey hair and wrinkles, the manky discs are just a sign of ageing – and ageing is something I’m extremely happy to be doing. So now time for a bit of living….. and more lovely ageing……

The monotony of waiting for scan results…..

Nearly two months into 2020 and I have totally failed to update my blog. My laptop contains countless half-written posts where I’ve run out of steam and lost enthusiasm for whatever I’d been writing.

I’m not really sure why I’ve hit a wall – it might simply be that nothing very much has been happening but that hasn’t stopped me before!

As always – scan results are looming and as always I’m terrified. Whilst the fear worsens I find that I have less and less to say about it. I’m bored of listening to myself explain how scary it all is and how the lack of any brilliant ‘next’ treatment is very very frightening. I’ve been bleating on about it for so many years now that I’m sure everyone is bored of hearing it. Really – I really wish everyone could understand how it feels to be in my situation – not in a nasty – I want everyone to have stage IV cancer way – but just so there was no need for any words when it comes to the pre-scan results terrors.

Obviously I realise that people aren’t stupid and that of course they recognise that I’m not in a great situation but I know from my own experiences and reactions to other people’s traumas that you can at times stop thinking about them and you can hope for the best and if people aren’t talking about how bad they feel you can assume/hope that perhaps they’re feeling ok.

So I feel the need to say that in the run up to scan results I feel terrible. For someone who really isn’t a hypochondriac I’m currently struggling with a very sore lower back – muscular or bone mets? Headaches – stress or brain mets? Forgetfulness – again – stress or brain mets? I really hate thinking like this. I grieve those lovely pre-cancer days when a headache was just a headache and that my memory letting me down was just down to be being a bit tired or anxious or even better getting older! I hate being the kind of person who thinks the worst. That’s probably why I spent the months from May 2013 to Sep 2013 desperately trying to persuade myself that all the very clear signs that my cancer had metastasized were actually something else entirely. The problem with that experience is that it’s now part of the trauma of that time and I am terrified of ignoring the obvious but still have a tendency to offer up both options the optimistic and pessimistic – both in my situation totally realistic.

As always I find myself going over the various scenarios of what my doctor will say – I try and imagine him giving me bad news – he’s had to do it several times before so it doesn’t take a lot of imagination. When I popped out in the car earlier I found myself wondering whether I’ll get to drive it again. If the cancer has metastasized to my brain then no more driving. I then berate myself for the unnecessarily dramatic thoughts but actually they’re not really very extreme – it’s always a possibility. Melanoma loves the brain and 6+ years into a stage IV diagnosis it remains a likely scenario. Obviously, I’m hoping for the best. I’m hoping that I’ll be one of the lucky ones who can get years from targeted therapy and that during that time advances will have been made which will provide a plan b but it’s impossible and naive to just assume the best – for me at least – it feels important to try and prepare for the worst too.

Usually at this point I’d tuck my notes away somewhere on my computer and come back to it and then abandon it. In the case of this blog I’d probably decide it was a bit too doom and gloomy….. which it is….. but right now I’m feeling rather Eeyore-ish so instead I’m going to post it. Sorry.