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!

 

 

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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….

May Meanderings….

I have tried several times since my last post to write a new blog post 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. 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 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!

 

A little respite from the terror!

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 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 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!

Fear & Honesty – all part of the fun and games of cancer

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 so far 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. 

Sleeping through January….

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…..

Full Steam Ahead

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.