The other side of September 24th

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 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. 

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5 years – 24th September 2018

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 24^th 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.

Summer and September

This summer has been utterly lovely. I always love the boys being off school and this summer we have taken full advantage and have had a family trip to Hastings, a trip with just me and the boys to the beautiful Auchmithie in Scotland and an amazing holiday by the sea in Andalucia including a couple of days in Seville. It is impossible not to feel very very lucky to have had so many adventures and better still to be alive and well and enjoying them.

The downside, as always, is that blooming September then arrives and the boys abandon me to return to school and Andy swans off to work and I feel utterly bereft. For the first few Septembers after my stage IV diagnosis I gave my self a hard time about how much I struggle emotionally at this time of year but I have finally learnt to accept it and just try to make sure that whilst it’s ok to acknowledge that I’m pretty battered by the scars of Septembers past – I’m not simply wallowing.

This year in my attempts to alleviate the fairly constant feeling of panic I seem to have turned into some kind of wild sorting and tidying monster. On the afternoon we got home from Spain as well as all the unpacking and countless loads of washing and drying I also sorted and filed the last few months’ worth of post, sent emails that I’d been meaning to send for ages – including such things as putting in requests for train delays earlier in the summer. Since then I’ve cancelled credit cards, requested refunds for faulty products, dismantled my bedroom in order to properly hoover under the bed, sorted out the horror of the cupboard under the stairs, sanded and oiled the kitchen counters as well as our coffee table plus a certain amount of cooking and baking in a slightly manic way. In that we only got home on Sunday afternoon and I spent Monday at the hospital having Pembro no. 23 – it’s probably been a little excessive. On the upside every mucky corner of the house ought to be perfect by the time the dastardly September 24th is over.

I can’t figure out whether I’m just trying to stay busy as a distraction or whether it’s the slightly odder getting everything in order just in case I don’t make it through the month – regardless, the house is enjoying all the attention and hey, September is slowly slipping past.

Hastings

Hastings

Scotland

Scotland

Spain

Spain

July Scan

Just a quick post to report that joyfully my latest CT scan showed everything remains stable. I couldn’t be more delighted as well as incredibly relieved that I hadn’t somehow pissed off the cancer gods/gremlins by taking back a bit of control and booking my summer holiday so far in advance. The up and down nature of my melanoma adventure means that I will never be complacent. Each scan is massive and terrifying and all-consuming and despite feeling really very well (other than the pesky fatigue) I know that the only way to really know what’s going is a CT scan and so there’s always a chance that it’ll give me the news that I don’t want to hear.

Thankfully that wasn’t the case this time and so barring any unforeseen melanoma-shaped disasters or sudden serious side-effects I can, as I had really hoped, enjoy my summer. As well as our big family trip to South West Spain at the end of the summer  we’ve also got a short trip to Hastings to look forward and I’ll be taking the boys to see our lovely friends in Auchmithie on the North East Coast of Scotland at the beginning of August. So the summer is looking really lovely. The boys break up in just over two weeks and I think it’s possible I may be even more excited than they are at the the thought of no early starts, no school run, no packed lunch-making and most of all lots and lots of lovely family time together. So all in all I’m feeling pretty chirpy and as is so often the case so incredibly lucky that I have yet another summer with my family ahead of me.

 

Living with Stage IV Melanoma

I have been a little quiet on the blogging front recently which in my case is generally a positive thing as it means that as much as it’s possible I’ve been putting melanoma to one side and just getting on with life. This last couple of months has been pretty good – I’ve been doing a lot of baking for a local market and have enjoyed having my head full of lists of baking schedules rather than multiple melanoma anxieties.

We also had a lovely few days away in Whistable over half-term and as always thoroughly enjoyed some time just the four of us. We’ve also booked our summer holiday which is unheard of for us as for the last 7 years since my diagnosis all holidays have had to be booked last minute based on when my scans fall. This year, I decided to take back a bit of control and despite the fact that I have a scan coming up we actually booked our holiday after the stable April scan. It doesn’t mean that I assume my July scan will be fine but logically – even if it isn’t – I figured we’d still really want a holiday and probably even more so if my treatment has stopped doing it’s magic. The boys were shocked when I told them they had to wait 4 months for our holiday as they’re so used to me saying – holiday booked, pack your bags!

So all in all the last couple of months have been very positive and in lots of ways just quite normal which has been really lovely. Cancer has still continued to make itself known but mostly in quite manageable ways. Treatment continues every 3 weeks and Pembro is continuing to make me very tired. In fact, I was a little caught out by how tired I was after my last treatment – I fell asleep on the tube back and then again once I got home – and it made me realise that I have been overdoing things. It’s very easy to try and be totally normal but I think I have to accept that I’m not and if I’m going to give the treatment it’s full chance I need to make sure I’m not utterly exhausted from doing too much. So lesson learnt and I’m now taking a baking break over the summer and am hoping I can be a little livelier and more energised as a result.

Last month I took part in a blogging event at my local Maggie’s centre. The event itself was really interesting but it meant really having to face my demons as the centre is based at Barts and I have deliberately avoided the hospital since my stage IV diagnosis in 2013. It seems extraordinary that a building can cause such a strong emotional reaction and I had to work quite hard to regain perspective and remind myself that the building had done nothing to me it was the people and the experience that have left their scars. It was pointed out that really what I ought to feel is relieved and grateful that I took control of my care and moved to a hospital which at that time offered better treatments rather than dwell on the multiple what-ifs of what would have happened had I stayed there. Thankfully that’s eventually what I did end up feeling but it was painful getting there and I was shocked at how hard it felt to be back in that place.

So whilst I have done a pretty good job of putting melanoma on the back-burner it still sneaks in – I don’t think it’s possible to live with a stage IV diagnosis and forget how precarious your predicament is – but it has been nice it not taking centre stage.

I have mentioned before that one of the least predictable emotions I have experienced since my ‘terminal’ diagnosis has been embarrassment at still being alive. Whilst I know how ridiculous it sounds, the embarrassment and the need to explain and justify why I’m still ticking along, remains very strong. In the last couple of weeks I have bumped into two people who I almost felt like ought to hide from as I feared that they’d be puzzled at my still being alive! The first was Max’s keyworker from nursery who knew about my original diagnosis and would have known about my stage IV diagnosis as the nursery fund raised for me when I walked the Shine Marathon back in 2013. As it happened she didn’t see me but Max was surprised that I didn’t say hello. I had to stop myself from saying to him that I hadn’t wanted to frighten her as she probably assumed I’d died several years ago.

The second was someone who runs a local business to whom I used to supply traybakes before I closed the business having received my stage IV diagnosis. Again, he knew about my diagnosis as I obviously let all the people I supplied know why I was stopping the baking business but since then there’s not really been much contact so almost felt the need to say – I didn’t lie, it really was dreadful and I was given months to live but I got lucky but no so lucky that I’m out of the woods. This is not the right conversation to have in your local supermarket but I found myself feeling very embarrassed and rather fraudulent despite totally knowing the reality of the situation.

My reality, my luck in responding to treatment and the oddness of my life was bought sharply home by digging out an old scan that my nurse had sent me. It shows the state of my liver when I arrived at the Marsden in September 2013 and how it looked at the 3 month scan and again 3 months after that. It’s far from perfect – I still have tumours on my liver and that doesn’t take into account the excess of tumours that lurk in the lymph nodes in the same area – but my goodness they were damn large and then due to immunotherapy they weren’t. It reminded me what a very lucky unlucky person I am.

September 2013 – baseline scan. Terrifyingly large tumours marked by red circles.

January 2014 – 12 weeks into treatment – tumours getting smaller

April 2014 – tumours even smaller

So thankfully, for now, life ticks on and I am enjoying a little respite from the all-encompassing worry. It’s good to know that with time the day-to-day anxieties do subside – normality slowly returns and most importantly, life goes on. The scans continue to loom and as the next ones gets closer it will be more frightening than the last as the strong sense that I’m pushing my luck and really testing my treatment becomes overwhelming but for now normality is winning and I’m enjoying the sunny days and the precious time with friends and family.

 

 

May: Melanoma awareness month

So it turns out that May is melanoma awareness month so really I ought to start with a reminder to you all to be wary of the sun (if it every actually decides to stay) and to do all the obvious – cover up, seek shade, wear high factor sunscreen but I very much hope that anyone who knows me, and knows what I’ve been through, does all of that anyway. Surgeries, treatments and what amounts to a death sentence really aren’t worth it for a bit of colour on your skin.

As I’m sure I’ve said before I was never a sun worshipper and did take all the obvious precautions but sunscreen was not as effective when I was younger and a bit like my lovely Max the merest hint of sun made it clear that essentially I was flammable.

I love the sun, I love the heat and despite my diagnosis I continue to enjoy them but I do so carefully. I still go on holidays to hot countries I’m just far more sensible and incredibly grateful to the joys of high factor, waterproof sunscreen. The improvements in sunscreen mean that both my boys, even after several weeks in hot countries, remain delightfully pale and interesting.

May, as well as being melanoma awareness month, also contains two melanoma-related milestones. The first is that I started my Pembrolizumab on 15^th May 2017 and so am about to hit my first year on that treatment and ironically – for an awareness month – it’s also the month that I was originally diagnosed so come the 24^th May it’ll have been 7 years. With all the milestones that have littered my melanoma adventure neither of these actually feel massively significant. My diagnosis anniversary was absolutely trumped 2+ years later by the news that I’d progressed to stage IV and hitting a year on Pembro in theory only marks that I’m halfway through that particular course of treatment. Obviously this is a massive oversimplification but really it means that May, unlike September, doesn’t get me in a muddle of anxiety and misery.

However realising that I’m about to hit a year on Pembrolizumab has got me thinking a lot about how frustrating the issues with access to drugs and the lack of personalised medicine continue to be. I’ve had to have my last 3 years worth of treatment paid for by BUPA as the NHS wouldn’t cover it due to the lack of available data as to whether multiple immunotherapy challenges would work. I hate having to abandon the NHS and feel terribly guilty both about having my treatment paid for privately and knowing that so many other patients don’t have this option however I’m also very determined to stay alive as long as possible and so for me, that has had to take priority!

At a recent appointment with my Doctor we discussed how long, barring serious side effects or progression, (both highly possible and very scary) I should remain on Pembrolizumab. The data that exists tends to point to the idea that 2 years is optimum but really this is just based on random trial design and what has happened historically as again, the data is sparse. If I ever dare look ahead I like the idea of 2 years of treatment. I like the idea of completing the course and it would be the longest I’d ever managed on treatment so it felt like something to aim for. However, as time ticks along, I’ve become more and more conscious of how arbitrary it is and how, whilst it might be ideal for some patients – especially those who get a full rather than partial response to the drugs, it may not be right for me. (I’ve only ever had a partial response as my tumours although controlled refuse to go – some people are fortunate enough to see their tumours totally disappear leaving them with No Evidence of Disease – NED).

Every patient is unique. Their disease is unique. Their response to treatment is unique. My experience of this disease has absolutely highlighted how true this is. On the one hand my melanoma had a reasonably low risk of progression – it wasn’t massively thick and whilst it had spread to my lymph nodes it was only a micro-spread to one. However it did come back and when it did I was suddenly dealing with a very aggressive cancer with a pretty crappy prognosis. It was on my liver – which is bad and notoriously hard to treat. I had multiple tumours on and around my liver so it wasn’t operable and one of the cancer markers that can indicate a poor prognosis and a poor response to immunotherapy was, in my case, twice the upper limit. Regardless – I’m still here. I again defied the odds and responded well to drugs that are usually massively toxic and yet in my case I sailed through with only limited side effects. The major side effects I eventually did experience were caused by the less toxic of the two drugs I was originally on. I, like an awful lot of patients, am an anomaly.

Despite this, despite the fact that as patients we are all unique – the way the treatment is given is basically pretty uniform and doesn’t take our difference responses into account. So the fact that since September 2013 my treatments have worked well in terms of shrinking and stabilising my tumours with limited side effects but frustratingly don’t last is not really properly considered in relation to a long-term treatment plan.

On top of that, if I do reach the magic two years on Pembro I’m then faced with the reality that if I stop treatment I may not be able to access it again because guess what – there’s not a enough data! It’s possible that by next May this may be different but as things stand there are massive issues about people stopping immunotherapy and risking the possibility of no further access or even more ridiculously having to continue beyond the two year point in order to not permanently forfeit the life-extending treatment. This situation clearly makes no sense.

So whilst I’m pleased that Melanoma has it’s own awareness month and prevention is a massive issue, for me,  actually in terms of awareness – the issues of access to treatment and the lack of properly personalised care are paramount. I continue to be astonished that when diagnosed with stage IV cancer it’s not as simple as throwing the best treatment at the disease as often as you need it’s all about protocol, existing data, faulty trial design and as a result again and again people continuing to die.

 

The loneliness of scan-time

I’ve been dithering as to whether to write yet another post about pre-scan nerves. The urge to try and express and explain some of the cancer chaos that goes on in my head tends to come to a fore when my scans are imminent and even more so prior to the 6 monthly brain MRIs. However, my reluctance to write is that I’m so bored of saying the same thing. Part of what I hate about scan time is the absolute monotony of the same old fears, same old anxiety, same old panic as to whether my luck has once again run out.

On top of the absolute frustration and boredom is that it doesn’t get any easier. The fear is just as real every time and the last 4+ years has taught me that you just don’t ever know what to expect. As always I really do know how lucky I am to even be moaning about the monotony but you can’t really live your life day to day feeling lucky that you haven’t died yet…..and the ‘yet’ is the crux of it. Despite the good fortune and good decisions that have kept me alive I’m still sporting an unknown number (their location makes them hard to count!) of unwanted tumours on and around my liver and every time I’ve taken a break from treatment they start growing again and so my position continues to be utterly precarious. It was my ‘bad’ scan last April that led me to having to start on Pembrolizumab a few weeks later. Therefore every scan has the potential to upset the fragile balance.

The brain scans are the worst as the thought of melanoma taking up residence in my head utterly terrifies me. Not just because of the practicalities that it’s harder to treat and I’d have to give up my driving licence but because the thought of something growing in my brain is my last really massive fear in relation to this horrible disease and I don’t think it’s one I’d bounce back from with any great speed. The problem with an impending scan is very real fears come sneaking out and taking over.

This year the timing of scans, results and treatment has totally stopped us being able to get away over the Easter break and on top of that it’s left me feeling pretty flat. As I’ve said above the pattern of the same emotions is exhausting but it’s also very lonely. I’m bored with the sound of myself saying the same old stuff. So bored, that generally I’ve chosen not to talk about it. Plus it’s always a bit of a downer to explain that it’s scan time again and that as always I’m in a state of uncertainty and terror!

The reality is that I just won’t know anything until next week and until then I’m torturing myself with all the possibilities – my delightful insomnia/nightmares duo is back and I’m constantly reminded of how incredibly different and warped my life has become. My friends and family as always are amazing and supportive but there is a weight of responsibility which comes with being the patient and so not only can I think about little else other than what my cancer is doing I also don’t want to once again be the bearer of bad news. It’s hard not to feel quite detached and isolated despite everyone’s kindness and my own efforts to stay busy but there’s nothing like scan-time to remind me that stage IV cancer is no walk in the park.