I have tried several times since my last post to write a new blog and I’ve found that I keep starting them but when I come back to them they don’t quite capture how I’m feeling so I keep abandoning them. I was beginning to wonder if perhaps I only really blog when things are all up in the air and scary but actually I think what has been holding me back is that I don’t really know how I feel at the moment. In theory, I should be feeling amazing, I’ve just started my 5th cycle of Encorafenib and Binimetinib and my second scan on Monday has shown that the new treatment is continuing to keep my tumours under control. I am, obviously, massively relieved but I don’t feel like I can relax. I’m not sure it’s ever possible to relax when you have a stage IV cancer diagnosis but I’ve definitely had periods over the last 5+ years where I’ve mentally been in a pretty positive place – I don’t seem to be quite getting there with these new drugs.
It might simply be that the constant pill taking – 9 pills in the morning, 3 pills 12 hours later, or the list of minor but nonetheless there side effects (fatigue, slight nausea, hair thinning, sore joints) means that there’s no let-up but actually I think the problem is that from the moment I knew immunotherapy had stopped working and targeted therapy was my only option I’ve been aware that it often doesn’t work for that long. Some people get very lucky and the drugs last for years – one of my friends has just passed the 4 year mark on targeted – so I know it can happen but I also know that the average is a year and for some people they don’t even get that long and so it feels like I’m treading water. I didn’t know how I’d react to the new regime and I didn’t know whether it would work at all and so since December I haven’t really done anything. I’ve just ticked along and for a while that was alright – it felt sensible to allow myself some time to adjust to the new situation and the fatigue does tend to limit how much I want to do but actually it’s becoming rather depressing and that’s a place I don’t want to go.
There’s no way of writing this without sounding melodramatic but really what I want to do is live my best life. I don’t want to get to the end of a day or a week or a month and feel like all I’ve done is tread water. I’ve said before that my stage IV diagnosis didn’t suddenly make me want to write an epic bucket list it just made me realise that actually the mundane, the normal, just hanging out with my family is really rather lovely but what I realised recently is that there needs to be more treats. Life is, without doubt, too short and so just plodding on isn’t quite enough. For a long time Andy and I would book a short break or a holiday after every good scan but somehow this has fallen by the wayside – it felt strangely excessive and a bit embarrassing – but the December scan was a stark reminder of how precarious life is and now, a few months on, it’s time to start arranging some treats. So, to start, we’ve booked 5 days in Turkey during the May half-term and this is going to be speedily followed for me by a few days away in Valencia.
Unlike last year, we can’t start booking a big summer holiday as I’ll have another scan in a couple of months time and that’ll dictate the shape of our summer but I can certainly make the most of the in-between-scan-window.
May, as it is every year is Melanoma Awareness month. Last year I wrote about my frustration that the ‘Awareness’ tended to just focus on early diagnosis and skin safety but actually the issues of access was massively important – lack of it causes stage IV patients to die. This all remains the same – despite all current melanoma drugs currently being approved there are still enormous issues as to whether everyone is getting the optimum treatment at the optimum time. In that the sequencing of drugs is a hugely researched and important subject it’s not something that is currently being translated into patient care in the real world. I have been incredibly fortunate that private insurance has allowed me to navigate, with much advice, through the best treatment pathway for me but this shouldn’t be conditional on having private healthcare.
So, May remains a complicated month. This May should have been my two year anniversary on Pembrolizumab and in theory the plan was that I’d stop treatment and instead be monitored to check for further problems and would restart immunotherapy when it was needed. Well, my bastard cancer clearly didn’t get that memo and worked it’s way round the immunotherapy at the end of last year and so it’s hard not to be feeling a little sad that I didn’t hit that milestone. I don’t seem to be very good and completing treatments. I came off my original trial because of side effects after 17 months and then had to stop Pembro at 19 months due to progression. Thankfully my current treatment is simply ongoing for as long as it works so no clearcut deadline!
May also marks the month in which I was original diagnosed with cancer. As I’ve said in previous blogs, this milestone was so massively trumped by the stage IV diagnosis 2 years later that thankfully it doesn’t cause the same kind of headfuck as September 24th. However May (oddly also the 24th) ticks by and makes me a little sad that I was diagnosed with cancer nearly 8 years ago when only 34. My boys who were so little – only 3 and 5 back then and whilst I didn’t know everything would go the way it did and that I’d be given a terminal diagnosis – I did fear it and so the fact that Max will be starting at secondary school in September and Oscar is very nearly as tall as me now is astonishing and rather beautiful. The fact that Andy and I have made it through so many anniversaries that we reached 25 years together is equally amazing. It shouldn’t take cancer to make people live well and in my case, it shouldn’t take a setback like the crappy December scan to remind me that every day matters but perhaps the milestones are good for that – they make you stop and take stock. In my case, it’s made me go a little holiday mad but then I know that as a family there’s nothing lovelier than the four of us being together and away from all the distractions of real life.
So, more treats, less complacency. Make every day matter even if it’s just silly things like filling your house with flowers because they make you smile, or going out for a walk because there’s nothing like a bit of fresh air and nature to clear your head or making sure you start your day with a Malborough Bun because they’re marvellous or just book some more holidays!
Always my favourite kind of blog update – good news – just received my latest scan results and the bastard lymph node tumour that’s been causing horrible stress and anxiety since December has been beaten back into submission by the new drugs. It’s shrunk back to it’s pre-December size and all the other resident tumours remain stable with nothing untoward was showing in the brain MRI.
It feels as though an enormous weight has been lifted and I can finally, for the time being at least, breath again. As my last few blog posts have shown, it’s been a really difficult time – so much has rested on me responding to these drugs and so today feels like a double celebration. On the one hand, the cancer has for now been stopped in it’s tracks and on the other hand, my response to Encorafenib and Binimetinib may well open up the way for more immunotherapy when needed in the future. Even my doctor has made clear that the possibility of it working is speculative but it offers hope and most importantly it offers me more time.
So, I will be booking my tickets to go the MPNE conference in Brussels which is in a few weeks time and I shall be hounding every medic and expert there to find out what else is out there as I really would like to have a back-up plan for when this stops working. However, for right now I’m going to just enjoy the fact that I have responded and that I have several friends who’ve had really impressive responses to drugs like the ones I’m now on so that offers a huge amount of hope.
So now when I have to take the handful of oversized pills each morning I shall be doing so knowing that they’re definitely working their magic and I think it’ll make it’ll make them much easier to swallow!
So, just a quick one as I need to wrap presents for Max’s 11th birthday tomorrow and reply to a lot of very lovely messages and later today I shall be raising a glass but in the meantime the most enormous thank you to all of you who’ve been so incredibly kind and supportive over what has been a really tough few months. Under the circumstances I feel like I’m allowed to be a little overemotional and soppy so I really do want to say thank you for the amazingly generous support but also I am so sorry to be putting my nearest and dearest through this shit but for now – hurray for magic cancer-killing drugs!
I have always said that I like writing this blog as I find it phenomenally cathartic and so it feels like quite a ‘me, me me’ thing to do. Thankfully, the very kind people who read it, have reassured me that it offers some value beyond just being a space for me to moan about the realities of cancer and that it’s useful both for my friends to understand more about my predicament but also beyond that, for people to understand more generally about the realities of living with incurable cancer.
Since I began writing it I realise that actually what I like best is that I’m able to be a lot more honest when I write than I am when I talk to people. It’s not a deliberate thing – I don’t hold back the truth about how I’m feeling on purpose but a combination of avoiding social awkwardness, a decision to occasionally bury my head in the everything-is-ok-sand and a sense that generally people would rather hear happy rather than sad stuff means that I do inevitably hold back.
Over the last few weeks if people have asked how I am – I’ve chosen to focus on the fact that I appear to have been incredibly lucky and avoided any serious side effects so far and so have spoken about my relief that I’m basically fine. Amazingly the ferocious fatigue also seems to have settled down and I’ve actually got some energy at the moment. This is of course entirely truthful but it’s only part of how I am – the other part of me is very very aware that since the latest ‘bad scan’ in December I’m really frightened again.
I’m trying not to think about the massive ‘what if’ related to whether this treatment will or won’t work but regardless of my efforts to push the thought to the back of mind I am thinking about it and as always even if I can push the scary thoughts to one side during the day they always sneak back in at night.
Despite the fact that I’ve discovered that the shocks subside more quickly after 5 years of living with a stage IV diagnosis and it’s possible to adjust more quickly to the new normal it doesn’t make the horrible stomach-churning panic disappear and it doesn’t make it any more bearable. I will still sit on the train on the day I go and get my results and once again comment to Andy on how utterly intolerable that absolute terror is and will as always wonder how anyone is expected to go through it.
My scans (body CT and brain MRI) are booked in for next week and I’ll receive my results the week after. By then I’ll have completed two cycles of Encorafenib + Binimetinib and so if it’s going to work for me it ought to be evident in the scan results. Although, as has often been the case since I started treatment, there are a whole mass of possibilities that I might be presented with on scan results day. The perfect result would be regression of the lymph node that had shown progression or better still shrinkage of all the damn tumours that have continued to lurk despite drowning in immunotherapy drugs over the last 5 years. However, it’s often not that clear and I may not have responded to the new drugs at all in which case I’ll be dealing with lots of growing tumours and potentially new ones too….this makes me feel almost faint with panic…. Despite the various downs over the last few years I’ve not had to deal with new tumours….just the original ones growing and shrinking. It’s a very daunting prospect.
In that I spend a fair bit of my time hanging around on online forums with other melanoma patients (many of whom have become really good friends) and my twitter feed has increasingly become filled with fellow cancer patients it goes some way to normalising my cancer and so amongst those people I can talk more freely about my fears. I also have some very lovely friends who will also, in the right circumstances, let me talk about the worse case scenarios that tend to be spinning round in my head. However, I still tend to redirect the conversation to the potential positives to the fact that so far I’m not feeling any symptoms from the cancer, reminding myself and them that these drugs have a high chance of working and really just falling back on the fact that they just have to work…..the alternative is unthinkable.
I guess one of the big concerns I have is that on the one hand I’ve been lucky with side effects, with getting the best of arm of the blinded drug trial in 2013, with managing to access the drugs I need when required, in still being alive all these years after diagnosis – so it’s hard not to worry my luck might now run out. All of these factors that have kept me here have also made my case unique and so there’s no data for people who have Ipilimumab + Nivolumab, then Nivolumab, then Pembrolizumab and now Encorafenib + Binimetinib so who knows what that means for the likelihood of success with my current treatment.
So as I said above it’s not that people don’t and won’t let me talk about my fears but that somehow in conversation the combination of social niceties and my own terror of going too far thinking about the scary stuff tends to prevent me being properly honest.
So here, on my nice safe blog, where it’d would foolish to do anything other than tell the truth I can say I’m really scared.
Turns out Guinea Pigs natural expression is pretty scared so plenty of options for this blog post.
I’m now nearly 3 weeks into my new drug regime and amazingly, despite the dire predictions of hideous side effects from the combination of the new drugs Encorafenib & Binimetinib added to the Pembrolizumab already in my system, other than tired I seem to be feeling pretty much alright. The fatigue, to be fair to it – and why not as it seems to be my new companion – is pretty bad. Whilst I wouldn’t quite say it’s stopping me doing things I think I’m learning to not push myself too hard and so not actually trying to do very much. I rarely venture out in the evenings and try not to pack too much into my weeks and have inadvertently become quite the fan of the day time nap. They’re rarely deliberate I just find that if I sit still for any length of time during the day I’m pretty much asleep. It’s impossible to know whether the fatigue is due to the new drugs, or the new drugs combined with the old drug (in which case it might ease up a little as the Pembro will eventually be out of my system), or the anxiety or the insomnia…. but wherever it comes from it’s annoying but not a disaster.
In an attempt to tackle the insomnia I visited my GP to get some sleeping pills. He went through a whole list of questions including asking me whether I was depressed or had suicidal thoughts – my response was to point out the anxiety that was ruining my sleep was caused by my absolute desperation to stay alive – not sure whether he wrote that in my notes! The anxiety is a strange thing as I largely appear to have it under control during the day but nighttime, that lovely time when you’re supposed to be sleeping is when all the fears and worries come leaping out and dancing round my head either in the form of insomnia or when I do sleep – annoyingly obviously nightmares!
I’m still not loving taking the pills – they aren’t getting any smaller and taking 9 in the morning isn’t a joy but it isn’t getting any worse so it’s manageable. Andy pointed out that the problem with the daily pills isn’t that it reminds me about the cancer (as I rarely forget that element of my life) but it’s the constant reminder that I require treatment. I much preferred the routine of 3 weekly trips to the hospital for infusions despite all the shenanigans with cannulas as it took it out of my hands and it enabled me to not have to feel quite so at the mercy of the drugs. Plus I’m much happier with needles (despite my veins) than I am with taking masses of pills….. still, I don’t have a choice and I’m lucky that this is an option.
All I can do for now is to keep taking the pills and keep on desperately hoping that they’re doing what they should. I had bloods done last week and they were all fine and I’ll get more done next Monday when I go in for my next months’ worth of pills and it feels good that there are some checks on how I’m doing but really the big check will come with the scan which is about 5 weeks away. Although it hasn’t yet been booked, I’m pretty certain I’m due for a Brain MRI too so I can guarantee I shall be an absolute state in the run up to the results.
I have always said each scan gets a little scarier than the last – but this one will definitely be a winner in the scary stakes! Firstly, I know that the cancer has had some time to run a little wild, secondly, I don’t yet know whether targeted therapy will work for me and thirdly – the brain scan is always the unknown and therefore totally terrifying. So much rests on the results and really, until I have them, life is standing pretty still. I’m doing the basics, taking the drugs, looking after my family, seeing friends but there’s absolutely nothing concrete in my diary. We’ve lived like this before and I know that it’s do-able but it is tough – there are things that I’d really hoped to do this year and now, I really cannot commit until I know what’s what.
So unlike my last post when I was feeling like a trail-blazing guinea pig going full steam ahead – this time, I feel like a very sleepy, nervous version of that same guinea pig who really wishes she wasn’t the data – who’d very much like to know what to expect…..
So, whether I like it or not 2019 is underway and with it comes a new treatment plan from the Marsden. I had my appointment this morning and now have my first month’s supply of Encorafenib and Binimetinib (Enco+Bini). My new drugs caused a rush of excitement with the hospital pharmacy as apparently I’m their first patient to receive them – until now they’ve only been used as part of a trial and so the whole protocol proved new and exciting. Even my doctor described me a ‘trail blazer’. I did point out that I’d really like to be at the other end of things one day and for there to be mountains of data and reassuring information but to be fair I do know that with the equivalent drugs (made by other drug companies) the data does exist it’s just that I opted for the newest ones! Anyway, it was fun seeing the slight buzz of excitement amongst the really lovely pharmacists!
As always I had to fill in a consent form essentially saying I’m happy with every side effect under the sun as the drugs themselves will prolong my life. The side effects in some ways are more similar to those from chemo than the ones I’ve been exposed to with immunotherapy in that you won’t end up with the same kinds of potential autoimmune disorders – diabetes, hepatitis, colitis, pneumonitis and endocrine problems but there’s potential for more fatigue, nausea, rashes, aches and pains as well as more serious issues which thankfully are rare including heart and eye issues. As I’ve done in the past I’m going to assume it’ll be fine until proven otherwise. However, Prof Larkin did point out that I’m not simply taking two drugs but will still be very full of Pembrolizumab, so essentially I’m being exposed to 3 drugs and there are high levels of associated toxicity. On the plus side there’s also a slim possibility that it’ll make everything work better as I’m getting all the drugs! So I ought to be very vigilant over the next couple of weeks and in fact will be back at the Marsden in 2 week to get my bloods checked as a precaution. After that it’ll be 4 weekly visits to get my bloods done, see the doctor and pick up my pills plus a scan in 8 weeks to see whether it’s all working!
This move from immunotherapy to targeted treatment, from infusions to pills, from a treatment that might conceivably be a cure to one that always stops working at some point has been a lot to get my head around over the last few weeks. Thankfully, as I often say, time is a magical thing. Once the shock of the last scan had settled I’ve had time to get my head around all the changes and to think through the specifics of what it is that’s worrying me and to some extent deal with those concerns. Fortuitously (as this was arranged a couple of months ago prior to the shit scan) I’m off to Barnet tomorrow for one of my magical days where I see my counsellor, have a reflexology session (from a reflexologist not my counsellor) and then buy the world’s best doughnut so I’m sure the counselling will help me sort through some more of the current head-fuck.
I realised that one of my concerns was related specifically to the move from infusions via cannula to daily pills. Despite my rubbish veins, I don’t really mind being cannulated. In the end I get to just be a patient and it’s the nurse who’s responsible for getting the damn thing and they literally hold your hand throughout the process. Plus, it’s only 3 weekly and whilst I never forget about melanoma I don’t have to physically deal with it every day. The pill thing is different. It’s my responsibility to take them every day and it’s highly unlikely that anyone will hold my hand whilst I do. Although perhaps I ought to train the boys to do exactly that! Equally, no one will accompany me every time, provide me with lunch and then eat chocolate once it’s all underway. The element of ritual will be gone and it’ll just be me and the pills. Plus, it’s lots of pills – my doctor described it as 3 a day – what he hadn’t factored in is that you actually have to take several to make up the dose so in fact it’ll be 12 a day – 9 in the morning and another 3 in the evening. It’ll be fine. My veins will be happy to left alone and the slight nerve damage I sustained a few months ago from a cannulation fail will have time to mend but it is a big change and i’m not a big fan of change!
So this is the new normal – pills daily, new side effects to watch out for, 4 weekly hospital visits and I’m plunged even further back into the realms of uncertainty which to be fair I never really felt like I left. Last year it was liberating to take back some control having got to grips with immunotherapy and book our summer holiday months in advance and to generally not totally freak out at adding things to my diary more than a week ahead of an event and I’m sad to see that go.
Hopefully, if the drugs work and if they don’t make me too ill – we’ll regain some confidence about looking forward but for now life is very much for living in the present – which is much better than not living at all!
So, new year, new drugs and it’s full steam ahead. I shall be keeping my fingers very firmly crossed that I get lucky again and that my accidental trail-blazing ways will keep me here for a lot longer.
I started writing a new blog post a few days after my previous one but didn’t quite get round to publishing it and having had a quick read through now I’ve got to laugh at how irrelevant it suddenly is. The one thing I hadn’t predicted was that I’d get struck down by a delightful christmas fluey/coldy bug. In some ridiculous way, barring the shitty cancer, I’m stupidly complacent about my health I sort of assume that even I do catch something I can be rid of it fairly speedily – well the Christmas Bastard Bug had other ideas – perhaps like the bastard cancer – it felt left out and over a week in I’m still utterly wiped out by it. It’s been a rather unpleasant reminder of how little it takes to leave me feeling pretty broken. However, I’m stubbornly determined that it’s finally on it’s way out and hopefully some more rest and then a return to my lovely kettlebell classes in early January and I’ll once again be fighting fit!
So my not-to-be-published blog dwelt a little on the need to preserve this christmas and not let it get swept up in the shit that is cancer and I was damned if I was going to let the crap scan news of the 17th December mess with my precious Christmas. I haven’t quite had the Christmas I’d imagined and my family are probably far from impressed by how utterly broken I’ve been but I have to say – it’s not the damn cancer that caused the problems. So, to some extent – Christmas was kept safe from cancer. It’s astonishing how hardened to crap news we’ve all become. It’s not that I’m not worried by the latest scan results – I’d be an idiot not to understand the potential implications of the fact that the wonder drugs, the potential miracle, the closest thing to a cure melanoma has ever seen has stopped working for me – but I seem to have got better at compartmentalising the fear. So part of my coping mechanism is to decide that for Family Davis, 2019 will not be starting until the 7th January. That’s the day Andy and Oscar both return to work and school and that means I’m hoping to delay the worst of the fear, panic, sadness until just before I’m back at The Marsden to get my first prescription for the new treatment.
So, in the meantime, the bastard cancer gets to do it’s thing for the new few weeks. It’s quite an unsettling feeling knowing that the binds of immunotherapy that have been holding it in check have loosened and I’m having to place all my faith in my doctor that it won’t go wild between now and January 9th! To be fair, I do trust that the nearly 5 years of immunotherapy drugs that I’ve thrown at it are probably still doing something and so a couple of weeks ought to be ok. Plus, hopefully it’ll minimise the side effects to have a small treatment break before throwing more drugs at the problem and as it turns out – with the foul Christmas bug I wouldn’t have been well enough to get started on the drugs anyway!
My new drugs of choice are known as targeted therapy and the particular combination I’m going for is Encorafenib and Binimetinib. There are other combinations but essentially they’re all very similar – they’re just all made by different drug companies and if one doesn’t work the others won’t either. My decision to go for this particular combination is that the side effects are marginally better plus it’s the newest combination and I like new! During the slightly panicked hours of not sleeping in the days immediately after the scan results I found myself trying to get my head around how to say these two overly-complicated words and have almost been chanting them like some kind of mantra – pretty sure that’s not going to be enough – might need to actually take the things to feel the benefit.
This new drug combination has just got to work. Right now it’s the only option that I have. As I said in my previous blog if it does work it may well open the way for further options and perhaps more immunotherapy in the future but even my doctor has highlighted that there are no guarantees that that would even work – it’s speculative. However he does have a lot of faith in this plan and the likelihood that I will have a good response. He feels that with my history of doing well on the immunotherapy drugs there may be further scope if the Encorafenib and Binimetinib (Enco/Bini) can essentially confuse my melanoma and make it forget that it’s worked out how to get round the previous immuno drugs. This is obviously not in the least scientific but it’s as much as I understand at the moment and it’s this possibility that I’m having to hold on to as the alternative is not pretty. The alternative is that I’m one of the unlucky percentage who don’t get a response from targeted therapy and if that’s the case 2019 is going to be seriously bad as there’s nothing else out there to throw at my melanoma and I remember all to well from 2013 that it doesn’t take long for the bastard tumours to really grow and when they do it’s horrid and frightening. But, as I said – there’s no real point in going there in my head as I can actually only deal with what’s actually in front of me and at the moment there’s a high chance targeted therapy will work and so that’s where my head is at…..most of the time……just not in the middle of the night!
I know I have said this in other blogs but I have been totally astonished and overwhelmed by how kind everyone has been. There are been so many thoughtful messages and just so much support for me and I hope for all those at the centre of of this shit – Andy, Claire and my Mum and Dad too – and it really helps. I’m always amazed by the kindness not least because I’m surprised that people aren’t fed up with keeping up with the countless ups and downs since my stage IV diagnosis in 2013. I’m astonished anyone has the energy to keep up and to keep up the generosity with words and deeds. I’m an beyond grateful that they do as it really helps. It makes it all a less terrifying to know that I have so much support and when I’m not floored by the Bastard Christmas Bug it makes me feel strong and very much able to cope with whatever comes next.
So for the next week or so I shall continue to dwell in my 2018 bubble and ignore the fact that a new scary year may be starting and shall stick to my stubborn determination that the new year doesn’t start until 7th January.
Well it seems as though my cancer didn’t realise that Christmas was just around the corner or perhaps it did and was therefore keen to be part of the festivities. Sadly, my much-too-close to Christmas scan results today have shown that one of the tumours that lurks somewhere in the lymph nodes near my liver is growing again. So, somewhat alarmingly, for the first time since my stage IV diagnosis back in September 2013 my cancer has progressed whilst I’m on active treatment. In the past the two lots of progression I’ve had have both been when I’ve been taking a treatment break.
As you can imagine this all feels pretty daunting as I’d got used to the routine and was beginning to really look forward to the idea that I would be able to stop Pembro next May when I’d got to the 2 year mark and would then just go back on it when I needed it. I was beginning to foresee a life in which I just popped on and off immunotherapy at intermittent times and that would keep the cancer under control. However it seems that my melanoma didn’t have the same idea as me and despite me throwing the very best at it it’s found a way of bypassing the miracle drugs and I need to throw something else at it instead.
Now it’s time to move on from the gloom and doom. I am phenomenally lucky to be at one of the best, if not the best, cancer hospital in the UK and I probably have the very best Melanoma oncologist there is and he thankfully has a plan and remarkable amount of positivity for me. There is one more drug option that until now I’ve liked having as an emergency back up plan as after that – there’s currently nothing else. It’s another drug combo but it will be pills rather than infusions so my poor knackered veins will enjoy a break. It comes with it’s own list of side effects but in the last 5 years the drugs and dosages have been refined and it’s less tricky than it used to be. My doctor has also reassured me that it works very well after immunotherapy and that there’s a small chance that I might respond well to further immunotherapy somewhere down the line. As always – no one knows. It’s all new and my case is special as I’ve probably had more immunotherapy over the last 5 years than anyone else in the UK! So once again I am the data and there’s not nice reassuring stats to offer an real reassurance.
So, for now, onwards and upwards. I will once again be a bit of a guinea pig as who knows how I’ll respond and for how long. I’m not going to start anything until January as the new drugs can make you quite ill whilst they sort out the dosing and I could do without that over Christmas. Plus, I’m full of Pembro that it seems sensible to give my body a bit of break before adding more drugs to the cocktail! It certainly wasn’t the news any of us wanted but it makes me realise quite how much the treatment landscape has changed since my diagnosis – this was always my last resort and in the past it might give you 6 to 9 months – now it’s given in combination with another drug it can keep working for years. And those years are the ones in which they can keep working on treatments and so hopefully there’ll be something else in the future to move onto next.
Feeling pretty battered by the whole thing but remarkably determined that this will not bugger up Christmas and that the new drugs will just have to work and work well for me.
On this day 5 years ago I summoned every ounce of my very depleted energy and managed, with Claire, to take my lovely 8 year old Oscar and a group of his friends to a nearby soft play/climbing hell-hole – (obviously the place of dreams for a group of 8 year olds) to celebrate his birthday. These places tend to make you feel like death at the best of times and this was definitely not the best times. It was just over a month after finding out that my cancer was ‘terminal’ and the minor aches and other issues were ramping up and leaving me feeling pretty grotty and extremely full of a cocktail of pain killers.
Nonetheless, with Claire’s help, I just about survived the morning, and with the various children suitably tired out by crazy climbing, running, screaming activities I laid out their lunch stuff at home and then had to leave the rest of the afternoon in the hands of Claire and a couple of other very lovely and kind friends as I went off to the hospital. The 30th October 2013 was the date of the first stage of my first treatments on the blinded drug trial known as Checkmate 067. I didn’t have to do a lot – just had to get my bloods done and see my doctor and be signed off as ‘well enough’ to have my first drug infusion the next day. I remember very little about it beyond finding myself sitting in the waiting room crying because I’d had to leave Oscar on what I thought was almost certainly the last birthday of his I would ever see.
I had no idea that I’d get the ‘best’ arm of the drug trial. I had no idea that I’d get lucky and not get very badly hit by the side effects, I really had no idea how brutal the side effects could be and how most people struggled with them and I certainly didn’t realise that this treatment would be like an absolute miracle for me. The one thing I absolutely didn’t know and really wouldn’t have believed is that 5 years later I get to see that same beautiful boy turn 13 – my own little teenager. I’ve often posted about milestones and there really have been so many of them and really every birthday, every anniversary, every new school year and every one that finishes I cannot help but pause and marvel that I am here to see it and so they always feel particularly special. I didn’t think I was terribly complacent before my cancer diagnosis but there are certainly things that I just assumed. I don’t think when you have children you imagine that you might not see them grow up and yet that is something that I have to face and deal with every day and the milestones bring it home. Thankfully they bring utter joy. I genuinely couldn’t feel happier to see my boy turn 13 and I couldn’t be more proud of what a delightful young man he’s becoming.
I had no intention of posting another post so soon but one of the things that I have somewhat self-indulgently enjoyed about writing my blog is that for me it works a little like a diary – not that I was ever very good at keeping one – and I’ve found it quite useful to look back and see the highs and lows of the last few years. So, the purpose of this blog is a reminder to myself that as much as I struggle with September and as awful as the memories are – it all feels very different once the dreaded 24th is behind me. Obviously this year it was even more marked as the 24th had the added fun of scan results and so the anxiety and dread was worse than usual but equally the relief is even greater. The simple pleasure of seeing the date on my phone yesterday showing 25th September put a smile on my face that has remained ever since.
On being told that my scans were fine on Monday there is always an initial feeling of relief but it is tempered by both an inability to process it after all the weeks of worry as well as a feeling of frustration and anger that my life literally now rests on scan results. I spent most of the September feeling incredibly sad that my life changed so dramatically 5 years ago and I think I basically spend weeks grieving for the life I didn’t end up getting and I guess that remains even after the results. However by the next day that feeling slipped away and I just feel very relieved and lucky and very delighted to be entering another year after a death sentence of a diagnosis.
So I’m sitting here tonight on the eve of what feels like another impossible and miraculous birthday feeling very blessed. Despite being given months to live days before turning 37 not only did I make it all the way to 40 but I’ve kept on going and will be 42 tomorrow and as I often say – growing old is an utter privilege.
I have had an utterly delightful lunch out with my oldest and dearest friend Clea followed by a really lovely afternoon with my boys who appeared to be both laughing and crying at their attempts to secretly wrap presents. I feel as though the weight of the world that has sat like a dark cloud above my head, or on my shoulders, or wherever these things sit has finally lifted. I know that in just under 12 weeks from now the worry will build up again as another scan approaches but right now I can utterly deal with that because 5 years at stage IV and turning 42 when you were told you had months to live at 36 is extraordinary and I truly am one of the lucky ones. Plus I’m quite excited to see how my very silly boys have wrapped my presents – apparently they even used ribbons – and better still Andy will finally be back from what has felt like a very long work trip sometime around midnight tomorrow and so it’s hard not to feel rather joyful.
I honestly cannot believe that I am getting to write this post – 5 years was not even something I dared dream about on this day in 2013. Stage IV melanoma patients were lucky to get months and the really lucky ones might survive for a year or two.
Considering how long it’s been I still remember so much about that day.
I remember my oyster card refusing to work meaning I needed to buy a ticket which I feared was a bad omen.
I remember sitting in the waiting room with Claire and Andy and that as hard as we tried we kept running out of anything that resembled conversation.
I remember that the last tiny thread of hope disappearing the moment I saw my oncologist’s face.
I remember being surprised at my ability to ask questions about possible treatments and what to expect.
I remember my doctor being unnecessarily defensive when Andy pointed out that my year’s treatment on the Avastin trial hadn’t worked.
I remember, at Claire’s insistence, being shown a scan of my poor tumour-ridden liver (I was too shell-shocked to actually comprehend what I was seeing).
I remember being sent through to another room with the ‘bad-news’ nurse. I remember Claire and I both almost laughing at the horror of it as we’d seen and commented on so many other patients being sent to see the ‘bad news’ nurse.
I remember the three of us politely listening to the suggestions about palliative care and what support there would be for the boys whilst really just wanting to get out of the hospital. I’m pretty sure we said yes to cups of tea as it felt like the right thing to do.
I remember standing outside the hospital on a suitably dreary grey day and calling my parents to tell them that it was as bad as we’d feared.
I remember composing a text to send to my nearest and dearest to let them know that the news wasn’t good.
I’m sure there are some bits that I’ve forgotten but so much of it is still crystal clear in my mind and it takes very little, particularly during September, to get flashes of that awful feeling that your absolute fear, your nightmare is actually your reality.
I have often written in this blog about what came next, the combination of knowledge, amazing support and a massive dose of good fortune that mean that I’m still here today so I won’t go through that again beyond saying I know how lucky I am. There are now a substantial number of stage IV melanoma patients who were diagnosed in 2013 or after who, due to the amazing developments in immunotherapy, like me, are defying the odds and continuing to live with cancer. There are, as I’m always pointing out so many other patients who started this ‘journey’ with me but who have died so as I’ve said I am very much one of the lucky ones. However September and particularly September 24th is a difficult time for me as the memories alongside the terrible fears about how much longer I’ll continue to ‘be lucky’ flood in.
This September 24th not only marks 5 years but just in case this date wasn’t already stressful enough by some weird coincidence or possibly those damn goblins of mischief having fun, I also received my latest body CT and brain MRI results today.
I was given the option of changing the results appointment when I realised how the dates fell but in the end felt that September 24th will always be an awful day so if the news were to be bad it would just add to the shitness but if the news was good then it might go some way to saving this poor day. In the run up to today it’s been impossible not to get lost in the memories of 5 years ago and to imagine meeting with my doctor today and knowing within a second of walking into the room that once again I’d been pushed back on to that damn rollercoaster.
Thankfully and joyfully my results today are once again stable and my brain is brilliantly unremarkable. When the news properly sinks in I shall be breathing a massive sigh of relief.