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 15th 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 24th 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.



May: Melanoma awareness month

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.


The room at hospital with MRI scanner.



The loneliness of scan-time

Another Brussels Adventure

Last night I returned home from my 4th 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 15th 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 Brussels Adventure

Goodbye September

So finally September is over. I tried really hard this year not to get too bogged down in obsessing over the anniversary of my diagnosis and not letting what has become a seasonal September gloom take over but now that the month is over I realise that I didn’t quite succeed. Having re-read my last blog post I can see that despite my best intentions it’s not the cheeriest of posts. As much as I tried to celebrate the good and not cry over the bad I still couldn’t help but feel sad. I’m glad that I chose to spend both occasions with friends and to raise a glass to acknowledge September 24th and to celebrate my birthday a few days later as I think the alternative would have been very bleak but despite sticking two fingers up at melanoma it still refuses to go away.

Time is clearly an extraordinary healer – in my case it has allowed me to re-calibrate and adjust to the new life that I now lead but it doesn’t actually fix everything. I am still living with cancer. I am still undergoing treatment. In between my anniversary and my birthday I had to have my 6th dose of Pembro. Everyone, as always, was perfectly nice but it was a long day – too many attempts to get a cannula in and too many delays and at the end I was pretty exhausted but also the timing was just horrid. Days at the hospital, however amazing the hospital is, are still days that remind me that I really need this treatment and without it the cancer will take over my body as it keeps trying to do. It doesn’t help that I’ll need a CT and MRI before my next treatment and whilst I’m trying not to think too hard about the impending scans and results it all had to be arranged that day and with the arrangements comes the creeping fear.

My birthday too is inevitably bittersweet. It’s hard not to remember the awful birthday back in 2013 when I saw sense and cancelled my planned birthday drinks but still met with friends for breakfast and then went shopping for presents with Andy. My friends struggled not to cry – the news was still very fresh and whilst they looked to me to see how to behave I had no idea what to do. I do remember that with Claire’s amazing help we laughed and resorted to gallows humour which worked for us but I possibly wasn’t entirely appropriate and certainly wasn’t what everyone else was ready for.

I do remember feeling terribly sorry for anyone trying to buy a present for someone who’d been told only 3 days before that they were dying – they did amazingly and I received a lot of notebooks and lovely bath stuff. I also remember the cards – the beautiful thoughtful cards with messages that again must have been hard to write – ‘happy birthday’ suddenly feels less obvious in those circumstances. I have kept all the cards but struggle to read them now as it remains too raw.

That year, Andy and I went shopping to buy me the duffel coat I’d had my eye on. He insisted that I needed a present but all I could think was what a waste – I’ll only get a few months wear out of it. We then popped into a chocolate shop in the hope of finding some delicious little thing that might appeal to me as my appetite was rapidly dwindling. They tried to get us to sign up to their mailing list as apparently we might win a year’s worth of chocolates. Andy and I backed out of the shop and genuinely couldn’t work out whether to laugh or cry – I think we did the former but we probably did both. All of these memories felt like very pushy ghosts this year that just wouldn’t leave me alone. Despite it being four years the events of that September were so traumatic that they cast a very long and painful shadow. I keep trying to escape from it but the reality is that I think it’s probably more realistic to embrace and acknowledge it.

Around this time of year with both the anniversary of my diagnosis and my birthday I think I will always chose to spend time with my loved ones, to raise a glass, to celebrate still being here as it does basically feel right and it feels respectful to all those other melanoma sufferers who haven’t been as lucky as me.

However it doesn’t make the sadness of my situation go away. I really do miss my old life. I miss the normality of looking ahead, of not finding myself welling up at the thought of the milestones that I won’t see. I miss being well, not being paranoid about every twinge and not needing treatment just to stay alive. Mostly I miss the life in which I didn’t know melanoma would kill me.

The change in temperature and light, the end of summer, the boys going back to school makes it impossible not to relive the misery of September 2013. It was easier this year – I was less sad and less anxious but it still wasn’t great. I am genuinely very relieved that it’s over for another year. October can be all about baking and the half-term holiday and Oscar’s 12th birthday. All of these things make me happy. Phew for October.

Goodbye September

4 years – 24th September 2017

Four years at stage IV. Four years into being told I had months not years. Four years of blood tests, cannulas, IV treatments and scans. Four years of never making plans beyond the next scan. Four years of bouts of anxiety and fear that my luck might be about to run out. Four years treading water which occasionally feels more like quicksand. Four years into a terminal diagnosis. Four years is still four astonishing years. Four years of birthdays, anniversaries, celebrations and so many milestones – four unbelievably precious years.

I have celebrated more anniversaries with Andy – our 20 years together in 2014 seemed like a bit of a pipe-dream – hence our bucket list trip to New York – and yet now we’re well past 23 together and have even squeezed in a second trip to America and are very much hoping to go again.

I have seen Oscar grow from a little boy of 8 to a delightful nearly 12 year old who’s currently settling into secondary school and who honestly couldn’t make me more proud. He has already turned into such a lovely boy who forever astonishes me with his creativity, his kindness, his humour and the most ridiculously painful cuddles.

Max too has changed so much in the last four years. Back in 2013 he was only 5 and whilst you could see glimmers of how he might turn out – he already gave the best hugs – I had no way of knowing that at 9 he would overwhelm me with his extraordinary drawing, his ridiculous peskiness and humour and his generally excellent company.

I have in the last four years had countless cups of tea, cakes, lunches, drinks, celebrations, commiserations, adventures as well as – as I always say, far more laughter than tears – with my brilliant group of friends. I have talked ceaselessly and boringly about the experience of living with stage IV cancer and they have gone through the highs and lows and amazingly they have stuck by my side and not simply run for the hills.

Claire and my Mum and my Dad have also been forced to ride the clichéd cancer rollercoaster of the last four years with me. Like me, they have dreaded scans, waited nervously for the results and felt the full force of the misery of the bad ones and the joy of the good ones. It saddens me that my diagnosis, my bastard melanoma, didn’t just change my life but hit all those close to me.

Back in 2013, prior to getting my scan results, I had decided that if by some miracle they were ok, I would take a step back from the melanoma support forum I had joined and would attempt to put a little distance between melanoma and me. This was obviously ridiculously wishful thinking and so Facebook’s brilliant melanomamates group is still very much a part of my life. Through it, not only did I become involved with the MPNE, (the European-wide group that’s taught me about patient advocacy) but I have met countless friends who absolutely understand how I feel as we’re all walking the same treacherous road. These friendships are unbelievably valuable and through attending conferences and workshops I have met many of these amazing people in person. They too have supported me through the highs and lows of the last four years.

I have also lost count of the number of friends from the melanomamates group who have died. It would be too painful and self-destructive to fully engage with everyone on the group – apart from anything there are well over 1000 people on it – but there are always some connections, which just resonate, and those losses are always the most painful. In the last 4 years, there are been far too many women, my age, with similar aged children, who have done everything they possibly can, have sought the best hospitals, have gone through the most gruelling of treatments but in the end have died because melanoma is still a vicious killer. The losses don’t stop being heart-breaking and you don’t become immune but they are a reminder of how incredibly precarious my situation is and how every day should be celebrated. The ups and downs of my treatment over the last 4 years has also bought it home – so many amazingly good scans but still the devastating ones when the trial drugs stopped working, or again earlier this year when my second blast of treatment stopped doing it’s magic. Whilst it gets easier to pick myself back up and forge ahead with a new plan and new treatment it also diminishes the options that are left and that cannot be anything other than frightening.

So, whilst I am not a fan of the term cancerversary (some words should never be merged) I shall be acknowledging and celebrating this one as I did last year and the year before and I shall also be making an embarrassing fuss of turning 41 in a few days – as life is very much too short and you have to squeeze the best bits out of it. Whilst I am joyful to currently be well and responding to treatment I know that it can’t last and all I can do is keep on seeking the best treatment, getting the best advice and keeping my fingers very firmly crossed that I carry on being lucky for as long as possible.

The bonus years that I’ve already had do make me feel very much as though I’m living on borrowed time but regardless of how I label it it’s still been four amazing years spent with all those that I love. I shall always want more, I don’t imagine there will ever be a time when dying will actually feel ok (unless I’m ludicrously old and Claire and I are whizzing round being menaces with ear trumpets in wheelchairs). I think I’ll always want to see what’s just around the corner. With my boys that’s especially marked as I’m always going to want to see how they turn out and the changes that have happened in the last four years are only likely to be amplified in the next four. Obviously it’s not just about the boys – I desperately want to grow old with Andy and the thought of not doing so is pretty unbearable and so I guess, as I do with the boys I have to be a little ostrich-like and not think too hard about what the future might hold. Four years of ‘living with cancer’ has certainly taught me to live in the moment and so for now – that’s all I can do. So today I say a very large bugger off cancer and I shall be raising a glass to all those losses but also to how lucky I have been.




4 years – 24th September 2017

How am I……

The problem with my current ‘will it/won’t it’ work limbo, combined with the delightful fatigue that’s accompanying Pembro, is that I have far too much time to think. Thinking is obviously a pretty good thing most of the time but I’ve now spent 6 years thinking rather a lot about cancer and for nearly 4 of those I’ve spent far too much time thinking about dying and trying not to (think about it or do it!).

My most recent treatment has left me feeling utterly wiped out and so I’ve spent a lot of time trying to organise my thoughts in to something useful. On the one hand I am relishing the fact that other than being tired I feel very well and until I’m told otherwise I have to hope that the immunotherapy is doing its job. However, on the other hand, I am wishing away the weeks so I can find out whether Pembro is working its magic. The worst thing is, is that this isn’t the first time I’ve been in the this position – over the last 6 years there have been numerous obstacles in the form of significant scans that leave me mentally paralysed. So, the feeling is very familiar but it’s also very boring. I’m bored of feeling stuck, I’m bored of feeling cross with myself for worrying and then forgiving myself because I’d be an idiot not to, I’m bored of the sound of myself saying ‘yes, feeling fine, hoping it works’ and yet there’s no way round it this is my reality.

However, in relation to answering the ‘how are you?’ question I figured it would be useful to explain a little more about immunotherapy and it might help a little with the confusion and misconceptions. I absolutely cannot do this in anything resembling a scientific way as it’s utterly beyond me but just in terms of the basics, here goes….

I know that for pretty much everyone, other than those who are living it with me on a daily basis, my situation seems very complicated and alien. Cancer and cancer treatment is sadly all too familiar but melanoma and the immunotherapy drugs that accompany it are not. They work differently, they don’t produce the side effects that people associate with cancer treatment but that doesn’t mean they are any less powerful and potentially any less debilitating. At its most basic – immunotherapy drugs attempt to teach your immune system to recognise and deal with the cancer cells itself whereas chemotherapy is basically poison and therefore kills cancer cells but can be fairly indiscriminate and therefore causes other side effects.

This might sounds as though immunotherapy is therefore gentler on your body and to be fair – in my case – it mostly has been but the problem with messing with your immune system is that it can then go into overdrive and start attacking itself. Therefore the potential side effects from immunotherapy can be very serious as the autoimmune reactions can cause colitis, pneumonitis, meningitis, hepatitis, diabetes, endocrine problems and pretty much anything you can think imagine.

The drugs are often on-going if successful rather than the 3 months, 6 months etc associated with chemotherapy and so for me, in the case of Pembro, I shall be having it every 3 weeks for as long as it appears to be working and I’m not producing serious side effects – so really the longer, the better! At the moment this feels pretty daunting but actually, if that first scan shows things are working, then this will be entirely manageable. I think the three doses I’ve had already just feel hard because I simply don’t know if they’re doing any good and it’s frightening to imagine what’s going on inside my poor tumour-y body if it’s not.

The other confusing thing – although I think this not specific to immunotherapy – is that for some people the drugs have worked so well that they now show No Evidence of Disease – or NED (loveliest three letters in the alphabet for a cancer patient). Sadly, this hasn’t happened for me and I have to assume that it just isn’t going to – the best I can hope for is potentially some shrinkage then stable disease. Whilst stable is obviously not as lovely as NED it’s something I’m more than happy to live with.

When I was in on Monday I attempted to quiz my doctor about whether my lack of obvious cancer symptoms and my normal bloods bode well for the upcoming scan and as always he was unable to answer. This is something else I’m bored of although I totally understand why when I ask an impossible question he can’t produce a reply.

The reality is that I know why he can’t give me an answer. My situation is utterly unique. I’ve had 18 months of Ipi/Nivolumab (which is currently the most potentially effective melanoma treatment) and it worked well enough to stabilise my disease and I only stopped the treatment because eventually my immune system went into overdrive and started making me ill. I’ve then had a further 3 months of Ipi/Nivolumab which again stabilised the disease but eventually stopped working because for me, for whatever reason, my immune system can’t seem to learn its lessons and therefore has stopped recognising the cancer cells that the treatment was supposed to teach it to identify. So I’ve had to start more treatment. I don’t know of anyone else who has followed this exact path and so, right now, there are no answers. There are all sorts of possibilities – there’s a chance that last year’s treatment may still actually be doing some good and may be slowing down any potential growth, there’s a chance that my immune system just needed an almighty kick (in the form of pembro) to remind it how to deal with the melanoma cells and there’s a chance that my luck might have run out and I’ll need to seek another treatment option. So really, of course, there’s no way of anyone being able to tell me whether it’s working or not – the only way to know anything is to wait for the damn scan results.

And just in case that wasn’t frustrating enough there’s always a chance the results won’t be clear. I am having the scan early in the hope that if it’s good I’ll be able to book a family holiday and so it might not be totally conclusive. Last year I experienced some pseudo progression in the tumours where they are essentially swollen because of treatment but haven’t actually grown but this was only made clear by a subsequent scan a month later. So unless it’s either dreadful – more tumours/larger tumours, or wonderful – smaller tumours – I may still be a little clueless after results.

Having written all this I don’t want people to think that they can’t ask how I’m doing – but sometimes I think I probably avoid really answering because as you can see it’s complicated and because I’ve been here before (or at least somewhere very similar), at various points over the last 6 years I’m assuming everyone else also finds it very dull. Funnily enough, it seems with cancer, that there are no easy answers. So, please do keep asking but I apologise in advance for my ability to provide a very clear answer.


How am I……

Why I’m adding to the litany of cancer blogs

When I first started writing this blog I explained that I had huge reservations about doing so as wasn’t really sure what the purpose of it was. It seemed to me that there were so many cancer blogs lurking online and I didn’t have anything original or interesting to say. Of the few blogs that I follow the ones that I really engage with are generally beautifully written, or have a particularly brilliant and insightful way of viewing a situation or I know the blogger. In the third instance – knowing the blogger – they happen to be beautifully written and insightful too! So, with that in mind, I don’t really feel like I add anything to the genre. However, I find writing about my situation incredibly cathartic and so the reason I’ve continued to write is an entirely selfish one. I find it useful to give myself time to just sit and write about what I’m feeling and as an added bonus it’s a way for me to look back at my ‘melanoma adventure’. For the record – the name of the blog was a joke but it’s kind of stuck as I haven’t worked out how to change it or what to change it to!

For the first year of writing the blog I only told one person that I was doing it and where to find it and it’s taken me a really long time to point more people towards it and I’m still a little reticent. I have huge doubts about my writing ability and as I’ve said before I really don’t have anything new to say. However, people have been very generous and kind about my blog – possibly because it’s hard being mean to people with cancer but hopefully it’s because once in a while I actually have something interesting to say. I very much like the fact that no one actually has to read it. Unlike getting stuck in a conversation about my melanoma with me and finding it awkward to escape people can chose whether or not they actually want to read the damn thing! The main bit of feedback that I’ve had is that it’s useful to get an insight into what’s actually going on in my head and so, with that in mind, here’s the muddled, spaghetti-like mess I’m living with at the moment.

In my last post I wrote about my impending scan. It’s still impending…and the results are still a fortnight away so no news there. I attempted to explain why this next scan is feeling particularly daunting – it’ll be the longest I’ve gone without treatment since the stage IV diagnosis – and I hoped that by writing it down I could put the nerves aside and just get through the next couple of weeks. Unfortunately, things haven’t worked out like that – the nerves aren’t subsiding and instead I feel like I’ve hit a bit of a wall. Physically there are no obvious problems, no sinister signs that the cancer has progressed but then it often arrives unannounced so that in itself is not a huge comfort but mentally I feel wrung out. The pattern of my life, of my immediate family’s lives, for last 3 and half years has been dictated by melanoma, by appointments, treatments and scans. Initially I lived my life in 6 week blocks and now, in theory that’s moved to 12 week blocks of time. As I’ve said before, I’ve learned to take advantage of this somewhat disjointed way of living – there are more treats and far more ‘life’s too short not to…’ moments and that’s worked incredibly well and I’m sure it’ll continue to do so but right now it feels exhausting.

It feels hard to explain what it’s like to live what is essentially a very surreal life. There are many wonderful things about it but at the very heart of it is the knowledge that I’m busy harbouring a cancer that without treatment would have killed me three years ago and that whilst all appears to be well at the moment I just don’t know. It doesn’t take a lot for things to change and I’m very frightened about my luck running out. There are still other treatment options for me if and when I need them but the only one that holds a tiny hope of a miracle is the one that I’ve already had. First time round it provided months and months of amazing quality of life but it didn’t last – more treatment was needed and I moved further into the realms of the totally unknown.

For a stage IV melanoma patient I’ve been phenomenally blessed – three and a half years of mostly feeling incredibly fit and well is extraordinary. In comparison to many of the other people on my online support forum I really don’t have anything to complain about but compared to my old pre-cancer life I feel scared and I feel sad. I’d quite like to not feel a little bit embarrassed that I told everyone I had months to live and then kept on going. I’d like people to understand that I don’t have the answers – I have no idea how long my current treatment will keep working, neither do my doctors – no one does. I’d like to not have to have developed ways of staying busy and distracted so my life has more to it than just being a cancer patient. I’d like to not be terrified that every slight headache is the sign of something untoward happening in my brain. I’d like to not have a whole list of people who I light candles for who weren’t as lucky as me. I’d like to not have to be grateful that barring an unforeseen catastrophe I’ll see me eldest into secondary school this September but cannot be certain I’ll do the same for my youngest. I’d like to not have had a big old ‘woe is me’ moment – it’s a bit like outliving your terminal prognosis – it’s embarrassing –  but I guess it’s my blog so perhaps it’s ok to do it here as after all no one has to read it.

Why I’m adding to the litany of cancer blogs