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.

 

 

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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.

 

 

 

Another Brussels Adventure

Last night I returned home from my 4^th MPNE conference in Brussels and as always after these events I’m utterly exhausted, totally inspired and already missing all my melanoma friends. It seems extraordinary that a group of people who are brought together by something as vile as cancer can form such strong and joyful friendships.

This year’s conference was held in the same hotel as the first one that I went to back in 2015 and it was odd to think back over the previous years and realise how much has changed, how much I’ve been taught and what a rollercoaster of a journey the last few years have been.

Back in 2015 when I was on my first lot of immunotherapy – (Ipilumumab and Nivolumab on the blinded trial) I applied to go to the conference realising that as a stage IV cancer patient I needed to learn as much as I possibly could about the disease. What I didn’t expect was that I’d develop side effects from the drugs and ended up hospitalised in the days running up to the conference. I was so set on going that I was eventually able to persuade my consultant to discharge me with the promise that I was going to be surrounded by medics should anything go wrong. I arrived home from the Marsden on the Thursday evening and set off early the next morning to Brussels with a suitcase full of antibiotics, steroids and as it turned out no socks.

The conference was brilliant and my recent bout of side effects stood me in good stead for workshops about the risks that patients are willing to take. We are far less risk-averse than our doctors and carers and having just experienced grade 3 side effects first hand I was very clear where my priorities stood. I knew very few people who were attending the conference but those that I did know were lovely and welcoming plus I finally got to meet the phenomenal team behind MPNE. I also got to spend time with my much missed friend Lori. She was dreadfully ill that weekend and despite our plan to travel home together I had to leave her in Brussels as she was hospitalised with pneumonitis. Considering how ill she was – she still gave an extraordinarily powerful talk about her fight to access treatment and quite how much risk she was willing to take.

The first conference was a total eye-opener and like so many first time attendees I felt like a total fraud I was very much a patient and not a patient advocate and felt that whilst I learned a lot I gave nothing back and whilst I did join in with some discussions I was extremely shy. The following year, to my surprise, the indefatigable Bettina asked whether I’d be willing to give a talk about what the 2016 MPNE theme – knowledge is power – meant to me as a patient. To my even greater surprise I agreed to do it. How could I not – all those involved in MPNE work tirelessly to engage, inspire and ultimately empower everyone who attends so really when they ask you to do anything it is impossible to say no. Plus, the lovely Lori had died in November 2015 and remembering her passion and bravery (hate that word in relation to cancer but blimey she was brave) there was no way I wasn’t going to give it a go. In the months before she died, despite how ill she was, she’d been encouraging me to get more involved in MPNE and been gently pushing me to find my voice.

So in March 2016, I’d had got over my upset that I was off the trial, I’d had a lovely 9 month break from treatment and was several doses into my Ipi/Nivolumab re-challenge. I was beginning to realise that whilst I might not be the most proactive patient advocate my treatment story was important. There are still very few melanoma patients who’ve done this drug re-challenge and I was happy to tell my story as well as glean any information from those attending and talking as to what the likelihood of it working was! At the first conference I had been pretty knackered from the recent side effects and hospital admission at this second conference I was 3 doses into my 4 lots of ipi/nivo and was suffering from a fine combination of fatigue, facial flushing and an extremely dry mouth. None of these things make giving a talk very easy but I did it and once I’d stopped shaking with nerves I was very proud of myself for stepping so far out of my comfort zone and not totally screwing it up.

Forward another year and it was MPNE2017 and this time I was not on any treatment (having completed my re-challenge in April 2016) and was remarkably full of energy and was able to rush around doing a little Brussels sight-seeing in the tiny windows of downtime in the conference programme. Again, I’d been asked to speak and this time it was talk about how much an additional 3 months was worth. The talk was inspired by a workshop that I’d been to in London when I’d been appalled that an additional 3 months of life was considered of so little value and it really reinforced for me how essential the patient voice must be in any discussions about treatment and the value of life. It seems that even without me realising the whole patient advocacy thing was seeping into my life and making me bolder and braver about stating my views. This conference was brilliant – highly informative and beautifully put together and it was so lovely to catch up with a group of people who over the years had become my friends. I’ve talked before in other posts about how nice it is to spend time with other people who are also living with melanoma and I realise that part of the pleasure is that you don’t actually need to talk about your cancer story beyond a brief recap because these people live it too and understand all the ins and outs without any explanation.

So finally to this year’s conference and again it was a brilliant programme. For the second year running I was asked to provide bags of florenteenies for the MPNE faculty and so once again travelled to Brussels with a large suitcase of confectionary and a small rucksack of clothes! There were more small workshops than previous years and this meant it was far easier to join in with discussions and share my views. Plus, finding myself at my fourth conference, surrounded by so many lovely friends that it was impossible to talk to them all, I realised there really was nothing to be scared about. I gave a short talk about my experience of disease progression at stage IV and I helped run a workshop about patient forums both of which went smoothly and I don’t think I disgraced myself! Unlike last year when I was treatment–free and full of energy this year I’m 10 months into Pembrolizumab and finding the fatigue pretty hard work so there was no speedy sight-seeing and instead I perfected the art of the 10 minute power nap in order to make it through the long but fascinating days.

Despite only getting home last night today was a treatment day and I had to set off early to go for my 15^th infusion of Pembro. I started the day feeling pretty tired and tearful and really missing my lovely melanoma friends but thankfully the day went smoothly, my MPNE friends sent my lovely messages and I even managed to squeeze in another one of those magical power naps when I was waiting for treatment so the day ended more cheerfully than it began.

Looking back over the last 4 years of conferences it’s amazing to see how much has happened, not just in terms of the vast amount of immunotherapy I’ve had but in terms of the friendships I’ve made, how much I’ve learnt along the way and how much I feel like I very much belong to the really quite delightful MPNE family who I believe like me for more than must my florenteenies!

 

 

Another amazing milestone

Today is my little Max’s 10th Birthday.

This would probably have always felt pretty significant as to me he’s still absolutely a baby but actually the fact that he’s reached double figures and that I’m here to celebrate it with him seems utterly extraordinary.

My boys were only 5 and 7 when I was told my cancer was terminal and so even seeing Oscar into double figures seemed like a pipe dream and yet here I am, over 4 years later, enjoying Max’s 10^th birthday and feeling pretty blooming happy about it.

Cancer is absolutely shit. It’s a word that no one likes to hear and it’s impossible not to associate it with illness, misery and dying so it’s no wonder that even just the word scares people. However, on days like today, I have to acknowledge that the really weird silver lining is that it teaches you to take stock, to appreciate all the good stuff and so that’s really all this blog post is about. I am feeling incredibly grateful that I’m well and that I get to celebrate another significant birthday will my lovely little boy.

A very reluctant speaker

Years ago when I was doing my MA I discovered that I was expected to give a presentation as part of the course and the thought filled me with such dread and horror that I came up with multiple excuses to why I couldn’t possibly do it. To my great disappointment, I had no choice and had to do the damn thing but I was terrified, it was probably incomprehensible and it convinced me that public speaking and I really don’t mix.

Roll on a few years and throw a bit of life-changing melanoma into the mix and it turns out that there are many things – scans, waiting for scan results, cancer – that are far more terrifying than public speaking and this somewhat useful perspective has led me to being far braver about saying yes when in the past I would definitely have said no. I’ve blogged before about my talks at the MPNE conferences, the Melanoma Patient Conference and the few occasions when I’ve agreed to doing tv interviews. Generally, despite the terrible nerves and the occasion when I got so muddled that I ended up suggesting that my children had got younger and younger as the years went on, I have been happy with the outcome and as much as it’s not a natural situation for me I know that I’d regret not taking the opportunity.

Today, I had a totally crisis of confidence. I’d been asked to give a talk to 100+ GPs at a Skin Cancer training day. As always, my instinct was to say no but actually I was so pleased that they were including the patient voice in the training day that I said yes. I had thought long and hard about what I wanted to say – I’d been determined that I didn’t just want to tell my story but I wanted to highlight the ways in which the interactions between the GP and hospital system could be improved and in the end I was satisfied with what I’d put together.

I was the first speaker after the introduction and so read my piece and then scurried off, as I’m not a GP and so didn’t really belong. On leaving, I convinced myself that I’d made a total fool of myself and wasted everyone’s time and wasted a good patient advocacy opportunity. On reflection, a whole 5 minutes later (!), I realised that it was probably fine that my panic was because there was no opportunity to respond and more importantly – unlike the stuff I’ve done for MPNE – there was no one to squeeze my hand immediately after and tell me that I’d done OK.

This couldn’t have been made more clear by the odd juxtaposition of my slightly lonely talk this morning and the fact that today MPNE released the short film about me that they’d put together based my talk and interview at last year’s conference. The response to this from other members of the group was so kind and very much the virtual hand squeeze that I’d missed earlier. Like most people I’m not a fan of seeing myself on film. I can’t help be appalled at how I look – how twitchy I am and that somehow I never quite get the words I want out. However the team behind the film are amazing and couldn’t be more supportive and they have done an amazing job of making sense of my ramblings and helping me get my message across.

So despite my instinctive reluctance I shall continue to say yes, rather than no, when asked to share my experience of melanoma. I really do hope that my message made some difference to the GPs today and like with many of the things that I’ve been asked to talk about it turns out that my ‘cancer journey’ has me quite opinionated. There’s nothing quite like experiencing the highs and lows of treatment, scans, progression and all the fear that comes with it to make you quite passionate at getting your voice heard.

 

 

 

Happy and sad

I planned to write a straightforwardly happy post today as yesterday’s scan news was good and amazingly my tumours remain stable, my bloods aren’t doing anything wild and other than the fatigue all is good with me. I am, as always, phenomenally relieved and woke up this morning feeling very happy and very lucky.

This all still stands – I am very lucky but sadly nothing makes that clearer than discovering, as I just did, that another of my friends from the hospital died early this morning. Back at the beginning of  2016, when I embarked on my second course of Ipi/Nivolumab, I met another patient who was 3 months ahead of me in terms of that particular treatment and so had completed the combo drugs and had moved onto the Nivolumab monotherapy. We both received our treatment on Mondays and so would often bump into each other and catch up at the hospital. At that time my situation seemed more worrying as I was on my second go at immunotherapy, my tumours were hanging around being sinister on and near my liver and there was no way of knowing whether the re-challenge would work. Her tumours weren’t on any of her organs but had taken up residence in her lymph nodes but they appeared to be slow growing and although were causing a degree of pain and a lot of discomfort they didn’t, at that time, represent such a threat.

Move forward a few months and I got the amazing news that the re-challenge had been successful and the tumours were smaller and eventually stabilised but she was not so lucky – her attempts to keep the disease under control lead to two years of difficult treatment, much stress and anxiety and eventually the news today that she had died.

I’m not writing this for sympathy that belongs to her husband, family and close friends but just as a reminder that life is incredibly fragile and life with cancer especially so. Sometimes being in the best place, with the best doctors and pursuing the best treatment proves to not be enough and sometimes this bastard of a disease behaves in utterly unpredictable ways.

So tonight I shall be lighting another candle and when I next go to the Marsden I shall do what I do on every visit and I shall think of the friends that I’ve met there who in the end were not as lucky and I shall be adding a new name to that ever growing list.

I really did want to write a happy post as somewhat ridiculously I don’t want my ‘cancer blog’ to be all gloom and doom and despite tonight’s sadness I am basically feeling very lucky and happy to know that all is currently stable and for now I’m safe but it doesn’t stop the sadness and the reality of the disease changing the narrative.

However, its January, its another whole new year, we’ve got a short break booked for half-term and I’m hoping to go to Brussels in March for the next MPNE conference so there’s good and fun stuff on the horizon. So when I go to sleep tonight that’s what I shall hold on to and I shall try and think of other stuff to add to the list in order that I make the very best of the lucky life I have.