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.

Lazy blogger…

It’s been a while and I’m suffering from terrible blog-guilt. I keep drafting posts and then binning them as a bit of me feels that I just keep writing the same stuff over and over again. Sadly cancer has a habit of being rather repetitive and I feel like there is a limit to how many times I can write about the scan nerves, the troublesome milestones, the good milestones,  the bad scan result terrors, the good scan result relief and all that comes in between.

The last few months have been very busy and full of a bizarre mix of patient advocacy and a lot of baking. The advocacy has included a strange day being filmed at home talking about my experience of treatment, an even stranger day talking to various audiences at Ralph Lauren about my experience at the Royal Marsden and two amazing trips to Sweden with the extraordinary and inspirational MPNE (Melanoma Patient Network Europe). So, for someone who doesn’t like public speaking or having their picture taken, I’ve spent a lot of time talking to audiences and having cameras pointed at me! It’s been quite the adventure – fascinating, surreal and altogether very worthwhile.

The baking has been less surreal but it has been plentiful – three outings to the local Hoe Street market plus a seemingly endless number of orders. It’s been great. On the one hand I really do love to bake (which is lucky really) and on the other it’s also been a brilliant distraction from getting too carried away with the scary cancer thoughts.

Sadly baking throughout the night is not advisable and so my insomnia has been a little out of control but today – unlike my December scan last year –  I got good news. Everything remains stable and so I’m very much hoping my body might give up it’s insomnia habit and lets me get some sleep.

I have clearly, and not surprisingly, been quite scarred by last year’s nasty Christmas present – ‘failing’ immunotherapy – plus knowing that I was about to hit my year (which is on average how long my new treatment lasts) has been a serious headfuck and so I am therefore feeling unbelievably relieved by today’s news. Andy and I just about managed to keep our chins up last Christmas (despite the news plus Max & I both being ill) and refused to let the shit news spoil things but it feels so nice to head towards the holidays without the panic about what on earth I would do next in terms of treatment having exhausted what’s available. So for a couple of months at least I can put those worries aside and instead enjoy the festive season with all my lovelies whilst putting all the anxiety and fear on the back-burner.

6 Years!

So here it is – the annual blog post that is both awful and amazing to be writing  – this is my 6th year since my Stage IV Melanoma diagnosis.

I’m sure you’re all bored of me saying it but it in that I still remember every last detail of the run-up to my ‘terminal’ diagnosis back in 2013 I will forever feel the need to reiterate how astonishing each subsequent September 24th has been. I had already been living with melanoma for just over 2 years at that time, I had already learnt a lot about the disease and I had also seen, almost without fail, that people diagnosed stage IV prior to 2013 almost always died within about year. These were not people who didn’t understand the disease, or the system – they were just people who ran out of options as at that time there so few and they didn’t work for everyone and when they did they didn’t last.

Therefore, when I was given the news that my melanoma had progressed and I was now uncomfortably full of sizeable tumours I understood what that meant. Sadly, there are still far too many patients for whom a stage IV diagnosis does lead to months not years but for many of us, the massive change in the treatment landscape that emerged back in 2013, has quite literally been life-changing.

I might have been dreadfully unlucky to get advanced cancer but I was astonishingly lucky with the timing and the fact that I now have a lovely group of friends, diagnosed during or after 2013, all living with Stage IV Melanoma demonstrates quite how important the timing was. I so wish that immunotherapy and the advances in targeted therapy which have allowed it to work for longer had been around for years and years. I wish these drugs worked for everyone. I really wish that so many of my ‘melanoma’ friends hadn’t died. I miss them all. I remain, however, incredibly grateful that I got lucky.

This last year has been a little on the challenging side. I feel very much as though the life raft that’s kept me afloat since 2013 has taken rather a bashing and I’ve been left clinging to a few rather manky sticks. Thankfully the sticks have turned out to less manky than I originally feared and have actually held together pretty well but it’ll still been a tough year.

The first three months were spent adjusting to the move from immunotherapy to targeted therapy which for me was a move from something that might be considered curative, which also had the advantage of coming with a plan b, to a treatment which works for a finite amount of time and was my plan b. It’s been a really frightening time. Plus, I fully expected to be wiped out by an onslaught of side effects and other than a month or two of increased fatigue and nausea at the beginning, I’ve so far found the treatment reasonably easy to tolerate.

I still don’t like taking the pills. There are far too many of them and the Encorafenib tablets are uncomfortably large but I’ve got pretty good at it and whilst I’d rather have infusions via cannula  – my veins, and the nurses who had to deal with my veins, are certainly very relieved by the transition.

Once I stopped feeling the need to hibernate whilst I waited for side effects to manifest and after my first scan which thankfully showed that the Enco+Bini was working – I realised that I was feeling very low. The failure of immunotherapy prior to Christmas really did hit me and my family very hard and my whole situation has without doubt become far more precarious. However, it was also a stark reminder that somewhere along the line Andy and I had let the treats and the celebrations dwindle.

It used to be that after every good scan we booked some time away or certainly made a fuss. We treated every event, anniversary, birthday as if it might be our last as the four of us and therefore it had to be properly cherished and celebrated but somehow over time this had felt a little embarrassing and melodramatic.

My realisation after the March scan was that actually we were wrong – life with stage IV cancer is really fucking hard. It’s phenomenally draining to try and get on with living when you don’t really have much of future ahead. It’s hard to be in normal situations when there are so many conversations where people take things for granted and you know that you can’t. Time is precious – and time with my family and my loved ones especially so.

So the last 6 months have been full of lovely treats – holidays to Turkey, Valencia and Lefkas, lots of nights out with Andy and with friends and as a result I have felt as though I’m trying and mostly managing to live my best life. Despite how horribly corny that sounds it’s true and it’s important. I don’t want to get the end of the week and feel disappointed.

September has therefore been a bit of an issue as I continue to find it tough – it feels as though September 2013 has left me with something similar to PTSD alongside a strange grief for the life that I didn’t get. I haven’t managed to stay cheerful and I have got bogged down but I have tried to combat the worst bits of it – lots of nice plans, lots of walks, lots of time with friends, a few tears but a determination to try and make the best of it and now to wallow.

Thankfully my most recent scans (body CT and brain MRI) have been kind to me and everything remains stable and so now – on the 6th anniversary of my stage IV diagnosis –  I will as always raise a glass and whilst I have to acknowledge that it’s been a tough year and that the poor life raft of mine is no where near as robust as it was, I am nonetheless still here.

So today I shall be raising a toast to a fairly astonishing (and back in 2013 unimaginable) 6 years as a stage IV Melanoma patient and I am incredibly lucky to still be alive and for that I am extremely grateful.

 

 

An attack of seasonal gloominess

Poor old September – I actually woke up with a terrible feeling of dread this morning and then saw the date – 1st September. My once favourite month – change in season, new school year, my birthday, has turned into some awful stinky mud-filled bog of misery, anxiety, fear and bad memories that I have to wade through. Now it’s always scans and the damn anniversary of my stage IV diagnosis and just so many horrible memories of the lead up to that fateful day in September 2013. 

It’s such a shame I can’t stay in my blissful holiday bubble forever. Our two weeks in Lefkas was beyond lovely – a villa overlooking the sea, delicious food, beautiful views, splendid waves and very best of all sharing it with Andy and the boys. Perhaps the most special thing – probably because everything was so perfect was that for two weeks I consciously decided to enjoy the holiday bubble and not be haunted by my usual worries. Andy and I talked about potential holiday plans for next summer and when the boys talked about the future – in the casual way children do – I allowed myself to imagine myself as part of it rather than letting my fears ruin the moment. For two weeks I stopped feeling like a stage IV melanoma patient instead I allowed myself to feel like a normal person.

I have wondered, since returning, whether I could maintain the ‘bubble’ but realised rather quickly that it’s not really do-able and it’s probably why family holidays have become more and more important. So, the bubble has deflated and although over the years I have tried to tackle my september-itus and not allow it to be the all consuming shitfest that it’s become in my head  – it remains a month that feels like a very hard slog. Far too many bad memories and just so much sadness that I got lumbered with a stage IV cancer diagnosis.

I have avoided talking politics in my blog as felt that cancer was enough of a downer but it’d be a lie to say that the current political climate isn’t contributing to the terrible sense of foreboding that’s pervading. It’s quite odd balancing my own personal terrors (post-Sep 2013 and upcoming CT and MRI scans) with the much wider concerns for the state of our country and what an earth it means for the future. I feel pretty selfish being in my usual September tangle of anxiety and bad memories when the political shitstorm has much wider ramifications but frustratingly it’s difficult to choose how and what gets in your head and stops you sleeping.

On the upside – the sun is shining, I managed to gatecrash my sister’s walk in Epping Forest this morning so had a good restorative dose of nature and am consciously trying to make nice family plans today but it’s feeling like quite an uphill struggle. Such a shame it was impossible to stay in the totally perfect holiday bubble forever.

Ah well, tomorrow is another day – unfortunately another September day!

 

 

End of an era

Two years ago I was feeling quite overwhelmed but very joyous to be seeing Oscar finish primary school. As I said at the time, the end of primary school is a fairly substantial milestone for all parents but it becomes pretty epic when you genuinely didn’t think you’d live to see the day. Well, it’s two years later and my little Max, who was only 5 and just beginning year 1 when I was told my cancer was terminal, has just completed his last day of primary school.

Like his big brother, I really don’t feel like my bastard cancer has held him back – he has never made any fuss about it and instead has just got on with school. He has transformed from an incredibly shy little boy who managed to spend several years successfully hidden under his mop of hair and his baseball cap to a still hairy but remarkably confident, funny and ridiculously creative boy (never going to be able to say young man – he’s my baby after all!). His drawing has been astonishing me for years and just in case it wasn’t totally obvious that his creativity is all Andy – he is proving to be remarkably musically accomplished too. He has so far refused any music lessons but instead has been teaching himself to play the piano and like his Dad, cannot walk past one without sitting down to play something. So I now find myself being offered both drawing and piano lessons from my ludicrously precocious 11 year old.

So both my boys will once again be at school together and as always I’m feeling that odd mixture of incredibly lucky that I have defied the odds and that the impossible has become possible but also greedy for so much more – I cannot imagine that will ever change.

For now, I shall relish the moment and actually since my last blog I have been doing much more of that – much more enjoying the present, many more treats and generally doing a good job of trying to live my best life.

The four of us had a lovely and indulgent 5 days away in Turkey during the May half-term which was quickly followed by a few days away for me in the very gorgeous Valencia. I was phenomenally well looked after by very lovely friends who as well as being brilliant company, feeding and looking after me beautifully also firmly sent me off each afternoon for a siesta which mean that I came home feeling unusually well-rested.

As well as the lovely holidays I also seem to have a had a bit of run on the patient advocacy work. There have been various opportunities to get involved, offer support as well as attend some really interesting educational workshops and events. The highlight was definitely the brilliant Melanoma Patient Conference which was both very interesting and informative but also a lovely opportunity to spend time with many of my melanoma friends. Whilst cancer is shit and there’s no question that it’s anything else, it has bought me a really lovely group of friends who become more and more important to me as time goes on. I also hosted a tea to raise money for The Royal Marsden and discovered that instead of running or walking ludicrous distances I could just happily bake and still raised over £1000.

And so once again it’s the summer holidays – which I love and in the middle of them will be a couple of weeks away and then it’ll be September and both my boys will head off to to school in their matching uniforms and more milestones will follow….